I just realised that I forgot to say thank you.
Thanks for reading, for following my little journey, for praying, for being encouraging, for posting comments - everything. It definitely made a positive impact on an otherwise crumby situation.
Wednesday, November 17, 2010
That's all folks!
So this is the last post for this chapter. A few people have mentioned it will be sad to see it end and in some ways I agree. I'm going to have to talk to people about what I'm up to now, including my family, rather than just let them read about what's been going on. I may start another blog at some point but I will need to have a purpose for it, other than ramblings about junk.
On the medical side, the eczema I had behind my knees, which went during treatment due to the steroids I was on, is now back and as itchy and annoying as ever. My hair is growing fairly well and strangers would never know I've had a rough year, except maybe for the scars on my neck and the burn that remains on the side of my face. My energy levels have been quite good. I've had a couple of lowish days after doing too much but I haven't been totally wiped out fatigue-wise since mid September. Sometimes I feel like I have more energy than I have had for years and it makes me wonder how long I was sick for. I have a CT scan next week and will then go and see Dr Giri the week after. If all goes well, you won't hear about it. If the results are bad, I might be back to blogging sooner than I thought.
Things in the MacGillivray household have been the usual crazy. Work, pre-school, childcare, family events, church and all sorts of miscellaneous things. Elsie still wakes up every night so Dave and I continue to be fairly tired. Dave will be ordained as a Deacon in the Anglican Church on Saturday 27th of November and that will be quite significant.
As I have been considering my life over the last year or so, what has passed and what is to come - and my demise - which may or may not occur before I get old and will not, at the moment be due to lymphoma - I have felt that it would be negligent of me not to make it clear what it is that I, as a Christian, believe and why it has made and continues to make a difference to this difficult time and life more generally. I will endeavour to do my best however such explanations are not my greatest skill. If there are any questions, it would be best to talk to Dave.
I will assume two things from the outset: 1. That Jesus Christ is an historical figure who really lived on Earth for a while. This is generally accepted as true by historians. 2. That the Bible is true and is the word of God. There are explanations and reasons for why this is not a totally ridiculous thing to believe but that is a different, though related, topic.
Here goes...
God created the whole universe, which includes our dear Earth, all the creatures in, on and around our planet and human beings. Initially humans were perfect and in perfect relationship with God, however this was short lived as sin swiftly entered the world with the assistance of Satan. Sin means living apart from God and once the original humans made a decision to go against God the perfect relationship people had with God was destroyed.
God loves the world and its people and wants to restore the relationship He once enjoyed with the humans of His creation. He is also just and righteous though and as such could not leave the sin against Him unpunished. This leaves God in a conundrum but He is supremely wise and had worked out a plan before it was even required. He sent His son to earth as a man. He was born just like any person, except without the hospital or midwife, and named Jesus. During his 33 year life, Jesus did not sin, he never lived apart from God. He only made it to 33 because after a few years of teaching and healing lots of people and getting up the noses of some other people, he was crucified on a cross. He was buried but after three days he came to life again.
Sin against God is punishable by death because it is so detestable to his perfection. When Jesus died, he was punished for everyone's sin. This only worked for two equally important reasons 1. He was a human, just like us and 2. He is God the Son. Our sin was against God so he was the only one who could cancel it and it's humans who have sinned, so a human needed to take the punishment.
Jesus rose to life as he said he would, as recorded in the Bible, which means his other promises are also trustworthy, especially since he is God. One of his main promises is that people who accept that Jesus died to forgive their sins and follow him as Lord will live in heaven forever once they die on earth. Heaven is where God and everything good is. This means there is no pain, sickness, suffering, Brussels Sprouts (I'm guessing...) or chemotherapy. The alternative, hell, is devoid of anything good and is the absence of God.
So regardless of what happens on earth, I have hope for the future. Life on earth is but a few years where we get to decide whether we follow Jesus or not and then attempt to live accordingly. Despite all the bumps of this year, I have felt rock solid that God has been with me all the way and that if it all went horribly wrong and I ended up really sick or dead then I would go to be with Him. I get upset when I think about all the people and opportunities I would have left behind and I did/do worry about the possible pain that might come before death, but I don't fear death itself.
So it is with a small tear in my eye (mainly left over from the above paragraph which made me think about leaving people behind) that I post my farewell. I have been glad to share my winding road and will particularly miss not sharing tidbits of observations of others. I encourage you to pursue health issues that don't seem to resolve and to remember that you are mortal and live in a fallen world where lots of crappy things happen (lots of quite good things happen too and should be remembered) and you don't really know what tomorrow holds.
On the medical side, the eczema I had behind my knees, which went during treatment due to the steroids I was on, is now back and as itchy and annoying as ever. My hair is growing fairly well and strangers would never know I've had a rough year, except maybe for the scars on my neck and the burn that remains on the side of my face. My energy levels have been quite good. I've had a couple of lowish days after doing too much but I haven't been totally wiped out fatigue-wise since mid September. Sometimes I feel like I have more energy than I have had for years and it makes me wonder how long I was sick for. I have a CT scan next week and will then go and see Dr Giri the week after. If all goes well, you won't hear about it. If the results are bad, I might be back to blogging sooner than I thought.
Things in the MacGillivray household have been the usual crazy. Work, pre-school, childcare, family events, church and all sorts of miscellaneous things. Elsie still wakes up every night so Dave and I continue to be fairly tired. Dave will be ordained as a Deacon in the Anglican Church on Saturday 27th of November and that will be quite significant.
As I have been considering my life over the last year or so, what has passed and what is to come - and my demise - which may or may not occur before I get old and will not, at the moment be due to lymphoma - I have felt that it would be negligent of me not to make it clear what it is that I, as a Christian, believe and why it has made and continues to make a difference to this difficult time and life more generally. I will endeavour to do my best however such explanations are not my greatest skill. If there are any questions, it would be best to talk to Dave.
I will assume two things from the outset: 1. That Jesus Christ is an historical figure who really lived on Earth for a while. This is generally accepted as true by historians. 2. That the Bible is true and is the word of God. There are explanations and reasons for why this is not a totally ridiculous thing to believe but that is a different, though related, topic.
Here goes...
God created the whole universe, which includes our dear Earth, all the creatures in, on and around our planet and human beings. Initially humans were perfect and in perfect relationship with God, however this was short lived as sin swiftly entered the world with the assistance of Satan. Sin means living apart from God and once the original humans made a decision to go against God the perfect relationship people had with God was destroyed.
God loves the world and its people and wants to restore the relationship He once enjoyed with the humans of His creation. He is also just and righteous though and as such could not leave the sin against Him unpunished. This leaves God in a conundrum but He is supremely wise and had worked out a plan before it was even required. He sent His son to earth as a man. He was born just like any person, except without the hospital or midwife, and named Jesus. During his 33 year life, Jesus did not sin, he never lived apart from God. He only made it to 33 because after a few years of teaching and healing lots of people and getting up the noses of some other people, he was crucified on a cross. He was buried but after three days he came to life again.
Sin against God is punishable by death because it is so detestable to his perfection. When Jesus died, he was punished for everyone's sin. This only worked for two equally important reasons 1. He was a human, just like us and 2. He is God the Son. Our sin was against God so he was the only one who could cancel it and it's humans who have sinned, so a human needed to take the punishment.
Jesus rose to life as he said he would, as recorded in the Bible, which means his other promises are also trustworthy, especially since he is God. One of his main promises is that people who accept that Jesus died to forgive their sins and follow him as Lord will live in heaven forever once they die on earth. Heaven is where God and everything good is. This means there is no pain, sickness, suffering, Brussels Sprouts (I'm guessing...) or chemotherapy. The alternative, hell, is devoid of anything good and is the absence of God.
So regardless of what happens on earth, I have hope for the future. Life on earth is but a few years where we get to decide whether we follow Jesus or not and then attempt to live accordingly. Despite all the bumps of this year, I have felt rock solid that God has been with me all the way and that if it all went horribly wrong and I ended up really sick or dead then I would go to be with Him. I get upset when I think about all the people and opportunities I would have left behind and I did/do worry about the possible pain that might come before death, but I don't fear death itself.
So it is with a small tear in my eye (mainly left over from the above paragraph which made me think about leaving people behind) that I post my farewell. I have been glad to share my winding road and will particularly miss not sharing tidbits of observations of others. I encourage you to pursue health issues that don't seem to resolve and to remember that you are mortal and live in a fallen world where lots of crappy things happen (lots of quite good things happen too and should be remembered) and you don't really know what tomorrow holds.
Friday, October 29, 2010
There walks a lady we all know
It was a year ago this week when everything got crazy really quickly. I was looking through my journal/notebook the other day and reading what I'd written. It was October 26th when the doctor told me the needle biopsy seemed to indicate Hodgkin's Lymphoma. I saw her the next day and after that appointment I went to see the surgeon - by the evening of October 27th I was at Modbury Hospital in preparation for removal of a lymph node from my neck the next day (Wednesday). On Thursday 29th I went home - that was a year today.
I went to see the psychologist this week and once I'd told her about my year, she wasn't surprised that I was back to see her. It was quite good. My head isn't all sorted out, it's going to take a while - but it was good to have someone help me start to work through a whole tonne of junk from the last 12 months.
I have remembered a number of times lately that around this time last year I was also taking Maesie to rehearsals for her dance concert. I am so very glad that I'm not doing that this year. No crazy make up, no hair in rags. It's lovely.
I'm still struggling with getting rid of a few kilos. I'm doing more exercise and eating less (most days) but I can't shift it. I am getting fitter and I feel better, but I just don't seem to be able to farewell some unwanted pounds. I know there may be legitimate reasons for this, but how long can I blame treatment? When should I do something else about it, or go and see someone? Who knows.
Lately it's been a struggle at home. Dave and I are tired. We stay up too late, Dave is trying to finish assignments, the girls wake us up during the night and we haven't really paused since I got the all-clear in September. The girls are being 2 and 4. They bug each other, don't listen to us, don't want those socks today, don't want to brush their hair. Dave and I are not on the front foot with the girls (or much, really) and we always feel behind. It doesn't make for a happy family. I felt rebuked this morning though because we went to the funeral of the baby who died a while ago. I need to find ways to enjoy my children while I still have them. It was so wrong to have such a tiny box up the front and to place a flower on it and so sad to watch a man carry his son to the back of a car in a box. One of the songs was 'Because He Lives'. I haven't sung that song for ages and it's a pleasant little chorus:
Because He lives, I can face tomorrow,
Because He lives, all fear is gone.
Because I know, He holds the future,
And life is worth the living, just because He lives.
I guess it also summarises my year a bit - whatever came along could be faced because Jesus died and rose to life.
I've decided to bring this blog to an end. I have one more post to write and then I won't be adding anything else, unless some other, significant, life changing event occurs. It's been handy to have somewhere to write things and to be able to let people know what's going on without lots of emails or phone calls, but now it's more difficult to make time to post. There also isn't much to say these days - random comments about things in the day, complaints about children not sleeping, other banal ramblings that don't need to be shared. I might make it into a book of some description, maybe just a print out of the blog as it stands for my own records or maybe something bigger with the goal of publication - I'm not sure at the moment.
I went to see the psychologist this week and once I'd told her about my year, she wasn't surprised that I was back to see her. It was quite good. My head isn't all sorted out, it's going to take a while - but it was good to have someone help me start to work through a whole tonne of junk from the last 12 months.
I have remembered a number of times lately that around this time last year I was also taking Maesie to rehearsals for her dance concert. I am so very glad that I'm not doing that this year. No crazy make up, no hair in rags. It's lovely.
I'm still struggling with getting rid of a few kilos. I'm doing more exercise and eating less (most days) but I can't shift it. I am getting fitter and I feel better, but I just don't seem to be able to farewell some unwanted pounds. I know there may be legitimate reasons for this, but how long can I blame treatment? When should I do something else about it, or go and see someone? Who knows.
Lately it's been a struggle at home. Dave and I are tired. We stay up too late, Dave is trying to finish assignments, the girls wake us up during the night and we haven't really paused since I got the all-clear in September. The girls are being 2 and 4. They bug each other, don't listen to us, don't want those socks today, don't want to brush their hair. Dave and I are not on the front foot with the girls (or much, really) and we always feel behind. It doesn't make for a happy family. I felt rebuked this morning though because we went to the funeral of the baby who died a while ago. I need to find ways to enjoy my children while I still have them. It was so wrong to have such a tiny box up the front and to place a flower on it and so sad to watch a man carry his son to the back of a car in a box. One of the songs was 'Because He Lives'. I haven't sung that song for ages and it's a pleasant little chorus:
Because He lives, I can face tomorrow,
Because He lives, all fear is gone.
Because I know, He holds the future,
And life is worth the living, just because He lives.
I guess it also summarises my year a bit - whatever came along could be faced because Jesus died and rose to life.
I've decided to bring this blog to an end. I have one more post to write and then I won't be adding anything else, unless some other, significant, life changing event occurs. It's been handy to have somewhere to write things and to be able to let people know what's going on without lots of emails or phone calls, but now it's more difficult to make time to post. There also isn't much to say these days - random comments about things in the day, complaints about children not sleeping, other banal ramblings that don't need to be shared. I might make it into a book of some description, maybe just a print out of the blog as it stands for my own records or maybe something bigger with the goal of publication - I'm not sure at the moment.
Wednesday, October 20, 2010
Making way for the postman
There's not a whole lot to say, and I don't have long to say it because I have to go to bed. I just thought I'd better write something for the week.
The main thing is that I have been feeling better. I will still go and see the psychologist next week because it will be good to think through some things, but the last few days have not been as bad.
On the weekend we got a few jobs done in the yard, which is a bonus. Today I pulled some more weeds out too. The weeds definitely defeated us this winter but next year I am hoping they won't get as far. We have a new strategy that involves Zero in spray packs conveniently located by the front door.
I think the postman has been avoiding our letterbox. The letters were on the bonnet of the car this morning, except I didn't notice until I had picked up a bit of speed down the street and they all flew off. I had to stop and run down the road to pick them all up. Then when I got home today there was a catalogue on the footpath. I think he's grumpy about the letterbox being full of rocks (courtesy of the girls) and there often being a car parked on the bit between the road and our letterbox (the verge?) and lots of high weeds. There's no dog chasing him though, so what's the big deal. Anyway, I like getting mail so I returned the rocks to the path, pulled up the weeds, asked Dave to whipper-snip the tall grass and moved the car. Hopefully the mail goes in the box tomorrow. Perhaps I need to lay a red carpet.
You may recall that some time ago I had a slight pre-wedding dilemma because I couldn't find the underpants I wanted. I found them today. They were in one of the 'to be washed' clothes hampers in the laundry, under a dress I haven' t worn since last summer and eventually threw into the machine today. Happy day. I was glad to see them again.
The other thing to mention is that I have signed up for WaterAid's Walk4Water and I am attempting to take 10 000 steps each day for a month to raise some cash for WaterAid. They help people in developing countries access clean, safe water. Please think about sponsoring my efforts and be thankful for the water you can access from a tap in your house. Here's a link that should work:
https://www.wateraidcommunity.org.au/SSLPage.aspx?pid=407&frsid=695
The main thing is that I have been feeling better. I will still go and see the psychologist next week because it will be good to think through some things, but the last few days have not been as bad.
On the weekend we got a few jobs done in the yard, which is a bonus. Today I pulled some more weeds out too. The weeds definitely defeated us this winter but next year I am hoping they won't get as far. We have a new strategy that involves Zero in spray packs conveniently located by the front door.
I think the postman has been avoiding our letterbox. The letters were on the bonnet of the car this morning, except I didn't notice until I had picked up a bit of speed down the street and they all flew off. I had to stop and run down the road to pick them all up. Then when I got home today there was a catalogue on the footpath. I think he's grumpy about the letterbox being full of rocks (courtesy of the girls) and there often being a car parked on the bit between the road and our letterbox (the verge?) and lots of high weeds. There's no dog chasing him though, so what's the big deal. Anyway, I like getting mail so I returned the rocks to the path, pulled up the weeds, asked Dave to whipper-snip the tall grass and moved the car. Hopefully the mail goes in the box tomorrow. Perhaps I need to lay a red carpet.
You may recall that some time ago I had a slight pre-wedding dilemma because I couldn't find the underpants I wanted. I found them today. They were in one of the 'to be washed' clothes hampers in the laundry, under a dress I haven' t worn since last summer and eventually threw into the machine today. Happy day. I was glad to see them again.
The other thing to mention is that I have signed up for WaterAid's Walk4Water and I am attempting to take 10 000 steps each day for a month to raise some cash for WaterAid. They help people in developing countries access clean, safe water. Please think about sponsoring my efforts and be thankful for the water you can access from a tap in your house. Here's a link that should work:
https://www.wateraidcommunity.org.au/SSLPage.aspx?pid=407&frsid=695
Wednesday, October 13, 2010
Anger, fear, aggression... the dark side are they.
I haven't been up to much really in the last week. Some work, a course for church, a family picnic, a couple of meetings. I have started making more of an effort to get fit again and to try and get rid of a few extra kilos that are no longer welcome. I've finished the antibiotics for my neck and that's pretty much fixed up. It's not red and it's not swollen anymore. It's healing ok I think.
I dropped Maesie at kindy this morning and ummed and ahhhed about this on my way home and I think I reached the conclusion that I should include it because it's part of this whole journey and I've been honest up till now, so why change?
It's been about three weeks since I was told I am in remission and although it would probably be fair to think I should be ultra happy and walking with a spring in my step, I'm not. I'm actually feeling fairly messed up. I suspect I am depressed, which is nothing new as I had post natal depression with Elsie and garden variety depression a number of years before that. I'm quite grumpy, quite angry and quite teary. I can't really work out why. I did borrow a whole heap of books on 'surviving' cancer and the psychological effects but I didn't finish them. Looks like I should have.
Don't think that I wish I wasn't in remission. That is not it at all. I am glad not to have lymphoma anymore. I am glad that I don't have to have any further treatment. I thank and praise the Lord for healing me and I know that He will get me through this bumpy time too. But I'm finding it's not just as easy as accepting it's all over and moving on. I almost feel more messed up now than I did when I first found out. I guess when it was all happening and I felt crap and had treatment and went to hospital and had blood tests and had no hair there was something to focus on, to work through, to take on as a challenge. Now I feel a bit like I've just been cut off and left to drift. You're all better, off you go. Back to what you were doing a year ago before all this crap landed in your lap. But I can't just go back. Things aren't the same as they used to be, in so many different ways. Or maybe it's more that most things are still much the same, but I am not. I don't know.
I half think that it's not a big deal and I should just get over it. Work it out, pull myself together. I'm not totally miserable, I do have some ok times and I can function pretty close to normal, but I feel the balance is more to the dark side than is recommended for good mental health. So I'm out of sorts. I've made an appointment to see the psychologist again, so hopefully that will help to get back on track.
Now, I've put this all here because I think it needs to be included and because it's safe to type it out on the computer. I don't want to talk about it in real life. It's a little risky and I'm a bit uncertain about everyone knowing stuff they usually wouldn't but I'm also a bit over caring. This is what's going on. But if you see me, don't embrace me or say anything about it.
This post will erase itself from your memory when you walk away from the computer.....
I dropped Maesie at kindy this morning and ummed and ahhhed about this on my way home and I think I reached the conclusion that I should include it because it's part of this whole journey and I've been honest up till now, so why change?
It's been about three weeks since I was told I am in remission and although it would probably be fair to think I should be ultra happy and walking with a spring in my step, I'm not. I'm actually feeling fairly messed up. I suspect I am depressed, which is nothing new as I had post natal depression with Elsie and garden variety depression a number of years before that. I'm quite grumpy, quite angry and quite teary. I can't really work out why. I did borrow a whole heap of books on 'surviving' cancer and the psychological effects but I didn't finish them. Looks like I should have.
Don't think that I wish I wasn't in remission. That is not it at all. I am glad not to have lymphoma anymore. I am glad that I don't have to have any further treatment. I thank and praise the Lord for healing me and I know that He will get me through this bumpy time too. But I'm finding it's not just as easy as accepting it's all over and moving on. I almost feel more messed up now than I did when I first found out. I guess when it was all happening and I felt crap and had treatment and went to hospital and had blood tests and had no hair there was something to focus on, to work through, to take on as a challenge. Now I feel a bit like I've just been cut off and left to drift. You're all better, off you go. Back to what you were doing a year ago before all this crap landed in your lap. But I can't just go back. Things aren't the same as they used to be, in so many different ways. Or maybe it's more that most things are still much the same, but I am not. I don't know.
I half think that it's not a big deal and I should just get over it. Work it out, pull myself together. I'm not totally miserable, I do have some ok times and I can function pretty close to normal, but I feel the balance is more to the dark side than is recommended for good mental health. So I'm out of sorts. I've made an appointment to see the psychologist again, so hopefully that will help to get back on track.
Now, I've put this all here because I think it needs to be included and because it's safe to type it out on the computer. I don't want to talk about it in real life. It's a little risky and I'm a bit uncertain about everyone knowing stuff they usually wouldn't but I'm also a bit over caring. This is what's going on. But if you see me, don't embrace me or say anything about it.
This post will erase itself from your memory when you walk away from the computer.....
Thursday, October 7, 2010
Part of a redneck agenda
I had my biopsy operation a couple of weeks ago, on the Wednesday. The following Thursday (that's last week now) I went in to see the surgeon so that he could check out my wound and follow up the procedure. It was nice to meet him - awake and fully clothed. He had a look at my neck and said it all looked good and repeated that he didn't see anything nasty down in my chest. After that appointment I drove to Gaganis Bros and had a great time buying all sorts of supplies for a conference I was about to cook on. Such a great place. I will definitely be going there again. I digress.
On Friday Dave and I dropped the girls with grandparents and drove to Victor for the conference. The cut on my neck was a bit red, but not too crazy and it wasn't sore enough for Panadol. On Saturday though, it was a bit more red and swollen and hot. I asked one of the guys who was a doctor at the conference what he thought and he said it didn't look too bad, just keep an eye on it and keep it clean. So I did and on Sunday I thought it was still red and swollen and hot so I asked a different doctor at the conference what he thought. He also didn't think it was too bad, but to keep an eye on it. On Sunday evening Dave and another one of the kitchen folk thought that it was starting too look worse, so they called in the doctor again. He agreed that it looked a bit worse and suggested a trip to the Victor hospital may be wise. We thanked him with a piece of florentine slice and then Dave and I went to the hospital. It was thankfully quiet. We were in and out with a day's worth of antibiotics and a prescription for a full course in about an hour. Bulk billed. Not too bad for a Sunday night of a long weekend. We were sorry that we had not taken more florentine slice for the doctor at the hospital. We returned to the conference in time for supper.
On Monday night when we got home it was still quite swollen and big and red. One end kind of opened a little and started oozing goo, so I armed myself with tissues and gently massaged and pressed my neck around the wound to assist in the draining of disgustingness from my neck. A bit of fun but a fair bit of gross. I had another crack at it on Tuesday morning and got a bit more out. Today it's not being very interesting. It's gone down and isn't very swollen. It's not oozing and it's not angry red anymore.
On Friday Dave and I dropped the girls with grandparents and drove to Victor for the conference. The cut on my neck was a bit red, but not too crazy and it wasn't sore enough for Panadol. On Saturday though, it was a bit more red and swollen and hot. I asked one of the guys who was a doctor at the conference what he thought and he said it didn't look too bad, just keep an eye on it and keep it clean. So I did and on Sunday I thought it was still red and swollen and hot so I asked a different doctor at the conference what he thought. He also didn't think it was too bad, but to keep an eye on it. On Sunday evening Dave and another one of the kitchen folk thought that it was starting too look worse, so they called in the doctor again. He agreed that it looked a bit worse and suggested a trip to the Victor hospital may be wise. We thanked him with a piece of florentine slice and then Dave and I went to the hospital. It was thankfully quiet. We were in and out with a day's worth of antibiotics and a prescription for a full course in about an hour. Bulk billed. Not too bad for a Sunday night of a long weekend. We were sorry that we had not taken more florentine slice for the doctor at the hospital. We returned to the conference in time for supper.
On Monday night when we got home it was still quite swollen and big and red. One end kind of opened a little and started oozing goo, so I armed myself with tissues and gently massaged and pressed my neck around the wound to assist in the draining of disgustingness from my neck. A bit of fun but a fair bit of gross. I had another crack at it on Tuesday morning and got a bit more out. Today it's not being very interesting. It's gone down and isn't very swollen. It's not oozing and it's not angry red anymore.
Monday, October 4, 2010
Camping and a conference
I know it's been a long time since my previous post which is a bit shody, especially since it contained such significant news. The last 11 days have been crazy though - I've only really been home for three of those days. I will give a run down of the last little while...
On Friday after the hospital the four of us drove to my parent's place to pick up their trailer which we then took down to a friend's place near the city to pick up an outdoor setting. We had a little catch up and then wiggled the furniture through the house and out to the trailer. Dave played tetris with the chairs in the car and on the trailer, with only a small length of rope. We left there at about 2:00 and went to Dave's parents for 'lunch'. Once we got home, Dave headed out again to collect a camper trailer from a friend and the day was pretty much done - dinner, storytime, kids to bed - and we'd achieved only two small tasks.
Saturday morning was RPM for me and Combat for Dave at Starplex, then home to pack for a camping trip. We left home way later than we planned and eventually got to Mount Crawford to join Dave's sisters and their families for a few days camping. The day was however saddened for me as we arrived home from the gym to a message on our answering machine and when I followed it up we found out that the very new child of some friends of ours had died. I haven't spoken to them again yet or learned any of the details but it was a bit of a shake up and gave me quite a heavy heart. I was very struck by the contrast of my good health news to the loss of such a small person and the pain of that for the family and how the world keeps turning in both cases as if nothing has happened but such experiences alter people forever.
We came home from camping on Tuesday, unpacked, spent Wednesday and Thursday at home washing and getting ready to leave again. On Friday we packed more bags, dropped the girls with grandparents and Dave and I went down to Victor Harbor to help at a ministry conference. I was cooking, with a whole heap of helpers, and Dave was MC of a few of the sessions as well as being in the kitchen.
Today we packed up, drove home, took our children back and started unpacking. That gets me to about now. I do have more to add but I'm going to bed as soon as possible so I will have to write more in the days to come.
On Friday after the hospital the four of us drove to my parent's place to pick up their trailer which we then took down to a friend's place near the city to pick up an outdoor setting. We had a little catch up and then wiggled the furniture through the house and out to the trailer. Dave played tetris with the chairs in the car and on the trailer, with only a small length of rope. We left there at about 2:00 and went to Dave's parents for 'lunch'. Once we got home, Dave headed out again to collect a camper trailer from a friend and the day was pretty much done - dinner, storytime, kids to bed - and we'd achieved only two small tasks.
Saturday morning was RPM for me and Combat for Dave at Starplex, then home to pack for a camping trip. We left home way later than we planned and eventually got to Mount Crawford to join Dave's sisters and their families for a few days camping. The day was however saddened for me as we arrived home from the gym to a message on our answering machine and when I followed it up we found out that the very new child of some friends of ours had died. I haven't spoken to them again yet or learned any of the details but it was a bit of a shake up and gave me quite a heavy heart. I was very struck by the contrast of my good health news to the loss of such a small person and the pain of that for the family and how the world keeps turning in both cases as if nothing has happened but such experiences alter people forever.
We came home from camping on Tuesday, unpacked, spent Wednesday and Thursday at home washing and getting ready to leave again. On Friday we packed more bags, dropped the girls with grandparents and Dave and I went down to Victor Harbor to help at a ministry conference. I was cooking, with a whole heap of helpers, and Dave was MC of a few of the sessions as well as being in the kitchen.
Today we packed up, drove home, took our children back and started unpacking. That gets me to about now. I do have more to add but I'm going to bed as soon as possible so I will have to write more in the days to come.
Thursday, September 23, 2010
A very bad spray tan
Yesterday morning I was collected by an orderly and wheeled round to theatre for my mediastenoscopy and biopsy. I felt ok as I lay under the massive light with people in blue fussing about me and then the next thing I remember is attempting to wake up in recovery. General anaesthetics are so weird. After a little chuck of phlemy disgustingness and a mobile x-ray they wheeled me back to my room with Edith and Deirdre. They were happy to see me back safe and sound.
I spent most of the day snoozing on and off. Dave did come to visit for a couple of hours in the afternoon and my mum came in the evening. During the afternoon I felt a bit crummy - a bit sickly and I couldn't get comfortable but it passed and I started to feel better. I had a good couple of hours sleep before the rest of the night was interrupted by nurses coming in for all manner of reasons - blood pressure, nebuliser, antibiotics, a new jelco. It was annoying.
Dave told me that the surgeon had called him and told him that he didn't see anything in my chest that looked like lymphoma. He said he took a biopsy but that he didn't expect it to come back as active disease. I still have not seen or spoken to the man who actually cut my neck and poked around in there. I did, however, see him on Kochy and Mel this morning!
I had a shower this morning and scrubbed off my bad fake tan. I ate my breakfast, got dressed and packed up my stuff. The doctors visited during their round and said I would be able to go. A doctor came back later to tell me the results of the pathology. The biopsy came back as fatty tissue and fibrous tissue, no cancerous tissue.
I endured more chit chat from Edith and Deirdre. Fixed the curtain for Edith, threw away some manky flowers for Deirdre and helped Edith get her underpants on over the vacuum pump helping her leg wound to heal (too much information? probably) while I waited for my mum to pick me up.
Mum came and took me to Dave's sister's to meet up with him and the girls. I had a bit of lunch and then went back into the city for a seminar on water, sanitation and hygiene. After sneaking out early and pinching a bit of the afternoon tea I drove back and collected the rest of the family. On the way home to Gawler I called Dr Giri to find out what he thought of the biopsy result. He said that the surgeon had called him and passed on his observations during the operation. He said that the biopsy results and the surgeon's opinion, having looked at the area, over-ruled the PET scan from last week and that based on the new information, I was in remission.
So there it is. No more cancer. For now. No more chemo, no radiation. No more treatment.
I'm not quite sure what to do with that information just yet. It's going to take a while to sink in.
I spent most of the day snoozing on and off. Dave did come to visit for a couple of hours in the afternoon and my mum came in the evening. During the afternoon I felt a bit crummy - a bit sickly and I couldn't get comfortable but it passed and I started to feel better. I had a good couple of hours sleep before the rest of the night was interrupted by nurses coming in for all manner of reasons - blood pressure, nebuliser, antibiotics, a new jelco. It was annoying.
Dave told me that the surgeon had called him and told him that he didn't see anything in my chest that looked like lymphoma. He said he took a biopsy but that he didn't expect it to come back as active disease. I still have not seen or spoken to the man who actually cut my neck and poked around in there. I did, however, see him on Kochy and Mel this morning!
I had a shower this morning and scrubbed off my bad fake tan. I ate my breakfast, got dressed and packed up my stuff. The doctors visited during their round and said I would be able to go. A doctor came back later to tell me the results of the pathology. The biopsy came back as fatty tissue and fibrous tissue, no cancerous tissue.
I endured more chit chat from Edith and Deirdre. Fixed the curtain for Edith, threw away some manky flowers for Deirdre and helped Edith get her underpants on over the vacuum pump helping her leg wound to heal (too much information? probably) while I waited for my mum to pick me up.
Mum came and took me to Dave's sister's to meet up with him and the girls. I had a bit of lunch and then went back into the city for a seminar on water, sanitation and hygiene. After sneaking out early and pinching a bit of the afternoon tea I drove back and collected the rest of the family. On the way home to Gawler I called Dr Giri to find out what he thought of the biopsy result. He said that the surgeon had called him and passed on his observations during the operation. He said that the biopsy results and the surgeon's opinion, having looked at the area, over-ruled the PET scan from last week and that based on the new information, I was in remission.
So there it is. No more cancer. For now. No more chemo, no radiation. No more treatment.
I'm not quite sure what to do with that information just yet. It's going to take a while to sink in.
Tuesday, September 21, 2010
Two elderly room-mates
I'm in the RAH with Edith and Deirdre. These names have been changed but the real ones sound equally as elderly. One of them has had open heart surgery and the other had a pace-maker put in today. We're getting along famously for now but I'm not sure about later in the night once Edith goes back to her snoring.
It's been an interesting day. I called the hospital at 10:30 as I was instructed and they told me to come in between 12 and 1. I packed up my things at work and wandered over to the hospital. When I got to the admissions office there was a guy there trying to get his teeth fixed. He wasn't on the list and should have been at the Dental hospital instead of the RAH. He said something about Glenside and didn't seem completely with-it. He had no idea where the dental hospital was and the admissions lady wasn't being very helpful with her directions so I volunteered to take him down there. Luckily he was on the list there so I said farewell, wished him luck getting his teeth seen to and returned to the admissions office.
After a few minutes reading about Brad and Ang I was called in to the office to complete my first wad of paperwork and an official hospital wrist band. Then over to radiology for an x-ray. I waited there for a little while before it was my turn for a couple of snaps. From there I wandered over to Ward A4 and set myself up in bed 18. Since then I've peed in a little plastic pot, swabbed my nose, had blood sucked out of my arm, answered lots of questions, signed consent forms, met my two anaesthetists and consumed something they passed off as food on a plate that came around at dinner time.
My mum called in and I was allowed out of the hospital for a little while. I wandered across the road and bought some tea bags and then got a hot chocolate from Cibo before heading back to hospital to settle in for the night.
Hopefully it all goes well tomorrow. There's a fair few risks they've told me about and although they only tell you because they have to and the chance of it actually happening is small, it is a bit freaky. I had to sign to say that I understand that if it goes pear-shaped they may have to open up my chest. What the? I hope it all goes smoothly and is as simple as they expect it to be. I also hope and pray the biopsy comes back clear of disease.
It's been an interesting day. I called the hospital at 10:30 as I was instructed and they told me to come in between 12 and 1. I packed up my things at work and wandered over to the hospital. When I got to the admissions office there was a guy there trying to get his teeth fixed. He wasn't on the list and should have been at the Dental hospital instead of the RAH. He said something about Glenside and didn't seem completely with-it. He had no idea where the dental hospital was and the admissions lady wasn't being very helpful with her directions so I volunteered to take him down there. Luckily he was on the list there so I said farewell, wished him luck getting his teeth seen to and returned to the admissions office.
After a few minutes reading about Brad and Ang I was called in to the office to complete my first wad of paperwork and an official hospital wrist band. Then over to radiology for an x-ray. I waited there for a little while before it was my turn for a couple of snaps. From there I wandered over to Ward A4 and set myself up in bed 18. Since then I've peed in a little plastic pot, swabbed my nose, had blood sucked out of my arm, answered lots of questions, signed consent forms, met my two anaesthetists and consumed something they passed off as food on a plate that came around at dinner time.
My mum called in and I was allowed out of the hospital for a little while. I wandered across the road and bought some tea bags and then got a hot chocolate from Cibo before heading back to hospital to settle in for the night.
Hopefully it all goes well tomorrow. There's a fair few risks they've told me about and although they only tell you because they have to and the chance of it actually happening is small, it is a bit freaky. I had to sign to say that I understand that if it goes pear-shaped they may have to open up my chest. What the? I hope it all goes smoothly and is as simple as they expect it to be. I also hope and pray the biopsy comes back clear of disease.
Sunday, September 19, 2010
Run on
Yesterday we dropped the girls off with Dave's sister and her family for the night before coming home to eat a hearty dinner of chicken pasta and go to bed early.
This morning Dave and I got up a bit after 5, showered, quickly ate some porridge for breakfast, packed our bits and pieces and drove to Starplex to catch the bus. We were late and just in time to rush in to join the team for a photo. After that it was on to the bus for the trip down to Elder Park to start the City to Bay.
We started the run. We passed Wonderwoman with a stitch, some guy from the FBI and a ghostbuster. We got passed by kids, people pushing prams while they ran and army guys carrying a full pack.
We made it to the halfway mark in a bit less than 40 minutes, so I thought I'd get to the end in less than 80, but I struggled more in the second half. I plodded on and just tried to stick with Dave who was like my pace car. Closer to the end, I realised I wasn't going to make my 80 minute goal so then I just aimed to keep going and not stop. I really just wanted to stop but I pressed on and crossed the line with a time of 82 minutes, 41 seconds. I'm pretty happy with that. I couldn't train quite as hard as I would have liked and I'm carrying more weight than I would have liked. Plus I've had chemo in the last year. I guess that's got to count for something. I'm glad to have done the run this year and to have finished it and to not have stopped. In one way, it means more to me this year, given the happenings of the recent past, but I think I would have liked to get through the run even if all was well.
My legs are sore now, particularly my nanna knees. Just achy, nothing too serious. My feet held up to the test again, well worth every penny spent on them. I do have a blister on my little toe, but that's not too bad.
This morning Dave and I got up a bit after 5, showered, quickly ate some porridge for breakfast, packed our bits and pieces and drove to Starplex to catch the bus. We were late and just in time to rush in to join the team for a photo. After that it was on to the bus for the trip down to Elder Park to start the City to Bay.
We started the run. We passed Wonderwoman with a stitch, some guy from the FBI and a ghostbuster. We got passed by kids, people pushing prams while they ran and army guys carrying a full pack.
We made it to the halfway mark in a bit less than 40 minutes, so I thought I'd get to the end in less than 80, but I struggled more in the second half. I plodded on and just tried to stick with Dave who was like my pace car. Closer to the end, I realised I wasn't going to make my 80 minute goal so then I just aimed to keep going and not stop. I really just wanted to stop but I pressed on and crossed the line with a time of 82 minutes, 41 seconds. I'm pretty happy with that. I couldn't train quite as hard as I would have liked and I'm carrying more weight than I would have liked. Plus I've had chemo in the last year. I guess that's got to count for something. I'm glad to have done the run this year and to have finished it and to not have stopped. In one way, it means more to me this year, given the happenings of the recent past, but I think I would have liked to get through the run even if all was well.
My legs are sore now, particularly my nanna knees. Just achy, nothing too serious. My feet held up to the test again, well worth every penny spent on them. I do have a blister on my little toe, but that's not too bad.
Friday, September 17, 2010
These days turned out nothing like I had planned
Yesterday I had a PET scan to check up on what's going on. It all went fine. I didn't even mind drinking the disgusting barium stuff. I fell asleep in the machine and startled myself awake twice by snoring.
I felt pretty weird after the test, more emotional than I thought I would. I got a bit of lunch and sat and read the paper. I wandered back to my car, called in to see my mum at work, visited a friend for a while, collected a reserved book from the library and then went to Dave's parents' place to see the girls, get changed and have some tea.
After tea, Dave and I drove back into the city to go to the Powderfinger concert. It was ace. I was glad to have made it, having bought the tickets many months ago during treatment, not knowing what things would be like by September. We had seats in the stands like old folk and got there with plenty of time to get a couple of good spots. It was a great night and served as a good distraction from the scan.
This morning I received a call from Dr Giri to say that my scan did show some activity in one particular area in the middle of my chest. The activity showed up a little bit brighter than it was in the previous scan and is "suspicious" for continued disease according to the radiologist's report however Dr Giri said that it is still possible to have a false positive. I have to have a biopsy of the node showing the activity so that it can be analysed in the lab to determine whether it is still Hodgkin's Lymphoma or if it's something else. I have to ring the RAH on Tuesday morning to see when a bed will be available. Then I have to rock up and be admitted, stay the night and have a biopsy on Wednesday morning. I'm not too keen on having to spend a couple of nights in the RAH. I'm sure it will be fine but I don't really want to be roomed in with some weirdo or have to top and tail with someone with festy toenails or hear anyone spew.
It's a similar time of year to when this whole lymphoma business started last year so it's a bit strange to be going through the same kind of thing - scans with unwanted results and not knowing what's ahead. I'm not feeling too bad about it all but it's hard for Dave. He's struggling with things not ending and feeling instead like the same ride is starting over. I guess by the end of next week I should know more about what's showing up as activity and what treatment, if any, may follow.
I'm not quite sure what I think and feel about it all just yet. Partly I'm not too fussed and it's just another challenge to get through. Partly it's annoying because it messes up my plans for the week. It's also annoying because it upsets lots of people around me and I'm not too happy about that.
On a more positive note - I got a dollar coin the other day that I hadn't seen yet, the Crepe Myrtle out the front is showing new growth and I thought it was dead, there's blossom on the fruit trees and I have a Powderfinger t-shirt.
I felt pretty weird after the test, more emotional than I thought I would. I got a bit of lunch and sat and read the paper. I wandered back to my car, called in to see my mum at work, visited a friend for a while, collected a reserved book from the library and then went to Dave's parents' place to see the girls, get changed and have some tea.
After tea, Dave and I drove back into the city to go to the Powderfinger concert. It was ace. I was glad to have made it, having bought the tickets many months ago during treatment, not knowing what things would be like by September. We had seats in the stands like old folk and got there with plenty of time to get a couple of good spots. It was a great night and served as a good distraction from the scan.
This morning I received a call from Dr Giri to say that my scan did show some activity in one particular area in the middle of my chest. The activity showed up a little bit brighter than it was in the previous scan and is "suspicious" for continued disease according to the radiologist's report however Dr Giri said that it is still possible to have a false positive. I have to have a biopsy of the node showing the activity so that it can be analysed in the lab to determine whether it is still Hodgkin's Lymphoma or if it's something else. I have to ring the RAH on Tuesday morning to see when a bed will be available. Then I have to rock up and be admitted, stay the night and have a biopsy on Wednesday morning. I'm not too keen on having to spend a couple of nights in the RAH. I'm sure it will be fine but I don't really want to be roomed in with some weirdo or have to top and tail with someone with festy toenails or hear anyone spew.
It's a similar time of year to when this whole lymphoma business started last year so it's a bit strange to be going through the same kind of thing - scans with unwanted results and not knowing what's ahead. I'm not feeling too bad about it all but it's hard for Dave. He's struggling with things not ending and feeling instead like the same ride is starting over. I guess by the end of next week I should know more about what's showing up as activity and what treatment, if any, may follow.
I'm not quite sure what I think and feel about it all just yet. Partly I'm not too fussed and it's just another challenge to get through. Partly it's annoying because it messes up my plans for the week. It's also annoying because it upsets lots of people around me and I'm not too happy about that.
On a more positive note - I got a dollar coin the other day that I hadn't seen yet, the Crepe Myrtle out the front is showing new growth and I thought it was dead, there's blossom on the fruit trees and I have a Powderfinger t-shirt.
Monday, September 13, 2010
Three more sleeps
I went to see my GP on Friday and I now have cream for my eyelids (she thinks it's dermatitis of some description), antibiotics for my cold/cough (she thought I sounded a bit wheezy) and Savlon for my sores. I have been using these medications for a few days now and I think things are coming good.
I have had many suggestions about my eyelids and it seems I may have struck a chord with many who have had or still have, flakey eyelids. Well folks, it could be dermatitis caused by something you inadvertently rubbed on your sensitive eyelid skin and no amount of moisturiser is going to solve it. Go to the doctor and get the meds. It's an option anyway.
On Saturday I had quite a crushing day. I woke up with no energy at all. I got out of bed only because Elsie bugged me to and I made it to the couch. Maesie then yelled out that she wanted to get up so I called back that she could, but she wanted help. I called to Dave to help her because I couldn't do it. He got up and went down to Maesie and then she cracked a wobbly because she wanted mum to do it. Dave, who finds her irrational stubborn-ness testing at the best of times, lost his cool because he had been awake for all of about 5 minutes. He closed her door and told her to sort it out. She freaked out more and screamed like a banshee. I was weeping on the couch when Dave came out because I felt useless in the middle of it all and kind of like I'd caused it because if I was able to get Maesie then it wouldn't have happened so that didn't make Dave feel much better and Elsie-belle was standing in the middle of the lounge slightly confused and looking at me and saying "Sad, mummy?" And this was 7am. Ace way to start the day.
Dave toasted me a crumpet and made me a cup of tea. After that I shuffled around and got the girls dressed and packed snacks and then they went with Dave to the gym and stayed in creche while he taught his class. I went back to bed. I got up about an hour later, had a shower and then went to the Munno to get some groceries. It was a struggle. Dave and the girls had returned home by the time I got back. I had another crumpet and cup of tea and went back to bed for about 2 hours. By the time I got up it was 3:30 and we had friends coming round for tea to celebrate Dave's birthday at about 5. I did a bit of tidying up, shuffling about the place like an old lady in my slippers. Dave prepared almost all the stuff for his own birthday. It's not the way I planned it. I did make lemon delicious though and it was delicious. I started to get a bit more energy toward the end of the night, but it wasn't much.
I was a bit shocked and annoyed by it. I had sort of come to accept that every now and then I'm going to feel wiped out in the evening. What I had not factored in was waking up feeling like I'd been run over by a truck. I know there's supposed to be fatigue and that it can come and go for a year, or maybe even longer, but it's dumb and I'm feeling pretty cranky about it. I just don't understand enough about it. Sure it's repair, sure it's recovery, I've been through a lot, the body's been hammered......yeah, yeah, yeah. I haven't had chemo since May. What's going on in there now that requires a system shut down on a random Saturday without notice? ETSA deliver fluro orange slips when they're planning to cut the power - where's my notification, body? You're letting me down.
Despite my crappy conglomeration of bones, skin, muscle, hair (now) and other cellular matter bailing on me for the day, Dave and I (and the girls for a shorter time before bed) enjoyed a lovely evening with six good friends (and one new baby).
I was better yesterday though and fairly normal again today so I don't know what the story is. I've delayed my lung function test a couple of weeks because if I had it tomorrow I'm not sure the results would be a fair picture. I know my lung function isn't the best at the moment - I've got a cold. I made a time for Monday 27th September.
I do have my PET scan in three sleeps though but even better than that, once I have had my tasty barium solution to drink, had radioactive glucose injected into me and been through the scanner I'll get to go to the Powderfinger concert. I am looking forward to it quite a bit. It's been coming for a while and now it's really close. I don't want to build it up too much for fear of being disappointed and I am also afraid that the weather may not be favourable and it will be canned. I will be less than impressed if that happens.
I have had many suggestions about my eyelids and it seems I may have struck a chord with many who have had or still have, flakey eyelids. Well folks, it could be dermatitis caused by something you inadvertently rubbed on your sensitive eyelid skin and no amount of moisturiser is going to solve it. Go to the doctor and get the meds. It's an option anyway.
On Saturday I had quite a crushing day. I woke up with no energy at all. I got out of bed only because Elsie bugged me to and I made it to the couch. Maesie then yelled out that she wanted to get up so I called back that she could, but she wanted help. I called to Dave to help her because I couldn't do it. He got up and went down to Maesie and then she cracked a wobbly because she wanted mum to do it. Dave, who finds her irrational stubborn-ness testing at the best of times, lost his cool because he had been awake for all of about 5 minutes. He closed her door and told her to sort it out. She freaked out more and screamed like a banshee. I was weeping on the couch when Dave came out because I felt useless in the middle of it all and kind of like I'd caused it because if I was able to get Maesie then it wouldn't have happened so that didn't make Dave feel much better and Elsie-belle was standing in the middle of the lounge slightly confused and looking at me and saying "Sad, mummy?" And this was 7am. Ace way to start the day.
Dave toasted me a crumpet and made me a cup of tea. After that I shuffled around and got the girls dressed and packed snacks and then they went with Dave to the gym and stayed in creche while he taught his class. I went back to bed. I got up about an hour later, had a shower and then went to the Munno to get some groceries. It was a struggle. Dave and the girls had returned home by the time I got back. I had another crumpet and cup of tea and went back to bed for about 2 hours. By the time I got up it was 3:30 and we had friends coming round for tea to celebrate Dave's birthday at about 5. I did a bit of tidying up, shuffling about the place like an old lady in my slippers. Dave prepared almost all the stuff for his own birthday. It's not the way I planned it. I did make lemon delicious though and it was delicious. I started to get a bit more energy toward the end of the night, but it wasn't much.
I was a bit shocked and annoyed by it. I had sort of come to accept that every now and then I'm going to feel wiped out in the evening. What I had not factored in was waking up feeling like I'd been run over by a truck. I know there's supposed to be fatigue and that it can come and go for a year, or maybe even longer, but it's dumb and I'm feeling pretty cranky about it. I just don't understand enough about it. Sure it's repair, sure it's recovery, I've been through a lot, the body's been hammered......yeah, yeah, yeah. I haven't had chemo since May. What's going on in there now that requires a system shut down on a random Saturday without notice? ETSA deliver fluro orange slips when they're planning to cut the power - where's my notification, body? You're letting me down.
Despite my crappy conglomeration of bones, skin, muscle, hair (now) and other cellular matter bailing on me for the day, Dave and I (and the girls for a shorter time before bed) enjoyed a lovely evening with six good friends (and one new baby).
I was better yesterday though and fairly normal again today so I don't know what the story is. I've delayed my lung function test a couple of weeks because if I had it tomorrow I'm not sure the results would be a fair picture. I know my lung function isn't the best at the moment - I've got a cold. I made a time for Monday 27th September.
I do have my PET scan in three sleeps though but even better than that, once I have had my tasty barium solution to drink, had radioactive glucose injected into me and been through the scanner I'll get to go to the Powderfinger concert. I am looking forward to it quite a bit. It's been coming for a while and now it's really close. I don't want to build it up too much for fear of being disappointed and I am also afraid that the weather may not be favourable and it will be canned. I will be less than impressed if that happens.
Thursday, September 9, 2010
I made my cake and ate it too
I was reminded last weekend that it was the Father's Day weekend last year when I first noticed the lump on the left side of my neck. I felt crummy and had some sort of cold so I rubbed along my neck to see if my glands were up. Turns out, one was really up. The next week I went to the doctor about it, the first of about four trips, and the rest is history. Crazy what can happen in a year.
My lemon cake made for Tuesday, with adventurous lemons, turned out very well. It was bloomin' delicious.
On Monday at work, I got a new stapler. It was even still in the box. I haven't used it yet but I hope it staples better than the one I have now. The current one is crunchy during operation and I like a stapler with a smooth action.
One other random note is that I have gradually been going through some of the girls' baby things and getting rid of them. Many to other friends and family, some to the op shop. It has been slightly cathartic to remove these things from the house. I neither teared up nor giggled uncontrollably but I did pause for a brief moment (and it really was brief) to reflect on the past baby years and to bid them a (fond?) farewell. I did, for a nanosecond, wonder if any of it should be kept for longer in case we have another child but then I decided that I would rather get all these nappy boxes containing extraneous clothing out of the house and if there ever is a #3, they can wear one suit forever.
Our City to Bay numbers came in the post yesterday. I'm aiming to finish 12km in 80 minutes. Don't laugh.
I'm going to the doctor tomorrow and I have three things to ask her about - my coldy cough, my crusty/flaky eyes and some weird sores on my chest.
It strikes me that I haven't made a mention of anything particularly God-related for some time. This is more a slackness in my recording rather than an absence of anything to note. He continues to provide for me and the family. All sorts of things including moments of joy, patience when otherwise humanly impossible, energy and random bits and pieces - a voucher from a friend, a parcel from someone else - for no particular reason. I have a PET scan a week from today, on the 16th, which should be the decider. If there's activity shown, something else will probably need to be done. If there's no activity indicated then I get the all-clear. I don't feel anxious about the scan, I still feel at peace about the whole thing. Whatever will be is in the hands of the God of the universe and I'm okay with that.
My lemon cake made for Tuesday, with adventurous lemons, turned out very well. It was bloomin' delicious.
On Monday at work, I got a new stapler. It was even still in the box. I haven't used it yet but I hope it staples better than the one I have now. The current one is crunchy during operation and I like a stapler with a smooth action.
One other random note is that I have gradually been going through some of the girls' baby things and getting rid of them. Many to other friends and family, some to the op shop. It has been slightly cathartic to remove these things from the house. I neither teared up nor giggled uncontrollably but I did pause for a brief moment (and it really was brief) to reflect on the past baby years and to bid them a (fond?) farewell. I did, for a nanosecond, wonder if any of it should be kept for longer in case we have another child but then I decided that I would rather get all these nappy boxes containing extraneous clothing out of the house and if there ever is a #3, they can wear one suit forever.
Our City to Bay numbers came in the post yesterday. I'm aiming to finish 12km in 80 minutes. Don't laugh.
I'm going to the doctor tomorrow and I have three things to ask her about - my coldy cough, my crusty/flaky eyes and some weird sores on my chest.
It strikes me that I haven't made a mention of anything particularly God-related for some time. This is more a slackness in my recording rather than an absence of anything to note. He continues to provide for me and the family. All sorts of things including moments of joy, patience when otherwise humanly impossible, energy and random bits and pieces - a voucher from a friend, a parcel from someone else - for no particular reason. I have a PET scan a week from today, on the 16th, which should be the decider. If there's activity shown, something else will probably need to be done. If there's no activity indicated then I get the all-clear. I don't feel anxious about the scan, I still feel at peace about the whole thing. Whatever will be is in the hands of the God of the universe and I'm okay with that.
Do not go to the Plaza on Sunday afternoon
Father's Day. Well. We all slept in a little because it was a late, interrupted night. David opened his gifts and was happy to receive some chocolate treats and random items decorated by our children (many thanks to pre-school and child-care for supervising those activities).
We rushed around to get ready for church and arrived with just enough time for David to plug in his guitar and tune it before the service started. Following the service we went home briefly to collect our dessert and other items for the rest of the day. I was stressing a bit because I thought we would be late, however we were heading to the MacVillage so I should not have worried. We arrived to the usual chaos and added more into the mix. We ended up eating a bit after 2. I disappeared for a while and drove to the Plaza to get cream. Foolish mistake. There were loads of people at the Plaza. It was nuts. I did return to the village despite yearnings for far off peaceful lands and then we had sticky date pudding, with cream, for dessert.
The spa was enjoyed by many, in a few shifts, and Maesie disintegrated around 6 pm with sore legs and arms. She whinged and moaned for the next hour or so before falling asleep on the way home in the car. I think Elsie wiped herself and her doll with a wet-wipe for the trip home.
It was an okay day but it was just fairly nuts. There's seven grandchildren and much of Village time is spent feeding them, washing them, changing their pants (the ones under 3), supervising spas, sorting out disputes and tracking down crawling babies. Then there's food to organise for everyone else, dishes to do, tea and coffee to sort out etc etc. It doesn't feel like much of a catch up with anyone, just a whole lot of doing stuff near each other. Families have been doing similar things for ages and places where village living really is village living seem to have it sorted out so I'm not quite sure why this village is so nuts. I do, however, have my suspicions ;)
We got home about 7:30 and got the girls to bed. It felt like it was 11pm. I signed us both up for the City to Bay 12 km run and went to bed.
We rushed around to get ready for church and arrived with just enough time for David to plug in his guitar and tune it before the service started. Following the service we went home briefly to collect our dessert and other items for the rest of the day. I was stressing a bit because I thought we would be late, however we were heading to the MacVillage so I should not have worried. We arrived to the usual chaos and added more into the mix. We ended up eating a bit after 2. I disappeared for a while and drove to the Plaza to get cream. Foolish mistake. There were loads of people at the Plaza. It was nuts. I did return to the village despite yearnings for far off peaceful lands and then we had sticky date pudding, with cream, for dessert.
The spa was enjoyed by many, in a few shifts, and Maesie disintegrated around 6 pm with sore legs and arms. She whinged and moaned for the next hour or so before falling asleep on the way home in the car. I think Elsie wiped herself and her doll with a wet-wipe for the trip home.
It was an okay day but it was just fairly nuts. There's seven grandchildren and much of Village time is spent feeding them, washing them, changing their pants (the ones under 3), supervising spas, sorting out disputes and tracking down crawling babies. Then there's food to organise for everyone else, dishes to do, tea and coffee to sort out etc etc. It doesn't feel like much of a catch up with anyone, just a whole lot of doing stuff near each other. Families have been doing similar things for ages and places where village living really is village living seem to have it sorted out so I'm not quite sure why this village is so nuts. I do, however, have my suspicions ;)
We got home about 7:30 and got the girls to bed. It felt like it was 11pm. I signed us both up for the City to Bay 12 km run and went to bed.
Tuesday, September 7, 2010
A lemon adventure
Last night we had a fun little adventure in the evening. I had purposed to bake a lemon syrup cake in preparation for a meeting tonight. I had organised for some lemons to be passed to Dave by a friend at his work so that I could use them to make said cake.
When I got home at about 5:30 pm and asked Dave if he had the lemons, he told me he had forgotten them. Oh, oh. I wondered about what to do: go to the shops? make a different cake? use the crappy oranges we already had instead? I didn't want to buy lemons because they never taste as good and I don't like spending money unnecessarily. I didn't want to make a different cake because I was fairly sure the lemon syrup cake was requested and I didn't want to use the oranges because they weren't fresh enough and the last time I ate one it was dissapointingly dry and unsweet.
So I decided to go on a lemon hunt. I know of four lemon trees within about 1 or 2 kilometres of our place so we all piled into the car around 6 pm and set off to find some lemons. The first tree had plenty but we couldn't get them easily so we moved on. The second tree turned out to be mandarins. The third tree was always questionable as it is within a yard enclosed by high brick and iron fences. We couldn't reach them easily either. We didn't go to the fourth tree although that would have been a bit dodgy too as it is in someone's front yard. There's no fence but it's probably not right to help yourself.
After the brick fence tree we went back to the one closest to our house (just the next street over) and had a closer look. I could have pulled a couple off and possibly would have, had the lights not been on inside the house. Instead I put my brave pants on and knocked on the door. I knew an older couple lived there because I have seen them pottering about over the years. An old man answered the door and I pretty much said "I see you have a lemon tree, may I have a couple?". He kindly obliged and told me they had been picked that day, the lemon tree was over 20 years old and another tree on their property that was 26 years old didn't make it through the recent storms and had fallen over. I thanked him and hopped back into the car.
I baked my cake and it is sitting on the bench waiting for tonight. I think it looks delicious, but we shall see. Hopefully it was worth the effort to obtain the precious lemons.
When I got home at about 5:30 pm and asked Dave if he had the lemons, he told me he had forgotten them. Oh, oh. I wondered about what to do: go to the shops? make a different cake? use the crappy oranges we already had instead? I didn't want to buy lemons because they never taste as good and I don't like spending money unnecessarily. I didn't want to make a different cake because I was fairly sure the lemon syrup cake was requested and I didn't want to use the oranges because they weren't fresh enough and the last time I ate one it was dissapointingly dry and unsweet.
So I decided to go on a lemon hunt. I know of four lemon trees within about 1 or 2 kilometres of our place so we all piled into the car around 6 pm and set off to find some lemons. The first tree had plenty but we couldn't get them easily so we moved on. The second tree turned out to be mandarins. The third tree was always questionable as it is within a yard enclosed by high brick and iron fences. We couldn't reach them easily either. We didn't go to the fourth tree although that would have been a bit dodgy too as it is in someone's front yard. There's no fence but it's probably not right to help yourself.
After the brick fence tree we went back to the one closest to our house (just the next street over) and had a closer look. I could have pulled a couple off and possibly would have, had the lights not been on inside the house. Instead I put my brave pants on and knocked on the door. I knew an older couple lived there because I have seen them pottering about over the years. An old man answered the door and I pretty much said "I see you have a lemon tree, may I have a couple?". He kindly obliged and told me they had been picked that day, the lemon tree was over 20 years old and another tree on their property that was 26 years old didn't make it through the recent storms and had fallen over. I thanked him and hopped back into the car.
I baked my cake and it is sitting on the bench waiting for tonight. I think it looks delicious, but we shall see. Hopefully it was worth the effort to obtain the precious lemons.
Monday, September 6, 2010
My big fat Italian wedding...
We've had a big weekend. Saturday morning began with our usual Starplex adventures - Dave taught Combat, I did Balance and the girls were in creche. We came home to have a shower, get dressed and pack the girls' things because Dave and I were going to a wedding and dropping the girls at my folks' on the way.
I very much dislike getting dressed up for weddings and other such events. I'm never sure what to wear. Part of me wants to wear fancy clothes, part of me most definitely does not. I require comfort so I refuse to wear some whimsical fabric blouse when it's 12 degrees, blowing a gale and raining. I hate being rushed getting ready yet invariably that's the way it is. I think I had 15 minutes to shower and dress on Saturday which would usually be ok if it was t-shirt jeans and jumper but when there are ear-rings involved and beads and stockings and heels and all sorts it's just too much for me.
I had a slight dilemma over underpants because I couldn't find a certain pair. The 'seamless' type. I still don't know where they are. It made me cranky but I didn't have enough time to sort it out so I had to settle for second best. I pulled on black pants (recently purchased from Vinnies), a black top (also from Vinnies) and my warm woollen jacket. Maesie helpfully said to me as I rapidly slapped product in my weirdo hair "Mum, you should look lovely for a wedding" to which I replied "Don't I look lovely?" "No, you need a dress to be lovely." Thanks, dearest daughter, that's just what your self-conscious/anti-dress-up mum needs to hear. I'm not sure where she gets these ideas from. I blame Disney princesses because it doesn't come from me.
We made it in time for the wedding and it was a lovely service. After the ceremony we had some time to kill so went to the shops for a few last minute Father's Day gifts. We went to Lizzy and wandered around in our wedding garb. It was quite amusing. Dave and I spent a nice time chatting about a few things - what to do with this blog, what would we do if we were just getting married now, what might happen next year - as we sat and had coffee and a muffin.
In a rare turn of events, we were early to the reception and got a carpark close to the doors. I wrote in the card and we wandered in without rushing. It was nice for a change. The wedding was between two people of Italian heritage and it was big. The groom was one of my good friends from uni and we felt privileged to be invited. The room was so large there was a screen on the wall projecting the events of the evening for all to see. There was a big dance floor and plenty of space for hundreds of people. The food was delicious and abundant. It was a real feast but more than that it was a real celebration. I was struck by the traditions of the culture and the number of children that were in attendance. There were loads of them and they were running amok and staying up too late but no one was phased by them or worried about them, at least that's the way it appeared. The children were just as much a part of the family celebration. It was a challenge to me because it's not the way I think. Perhaps I need to embrace some Italian views on parenting, children and family.
I very much dislike getting dressed up for weddings and other such events. I'm never sure what to wear. Part of me wants to wear fancy clothes, part of me most definitely does not. I require comfort so I refuse to wear some whimsical fabric blouse when it's 12 degrees, blowing a gale and raining. I hate being rushed getting ready yet invariably that's the way it is. I think I had 15 minutes to shower and dress on Saturday which would usually be ok if it was t-shirt jeans and jumper but when there are ear-rings involved and beads and stockings and heels and all sorts it's just too much for me.
I had a slight dilemma over underpants because I couldn't find a certain pair. The 'seamless' type. I still don't know where they are. It made me cranky but I didn't have enough time to sort it out so I had to settle for second best. I pulled on black pants (recently purchased from Vinnies), a black top (also from Vinnies) and my warm woollen jacket. Maesie helpfully said to me as I rapidly slapped product in my weirdo hair "Mum, you should look lovely for a wedding" to which I replied "Don't I look lovely?" "No, you need a dress to be lovely." Thanks, dearest daughter, that's just what your self-conscious/anti-dress-up mum needs to hear. I'm not sure where she gets these ideas from. I blame Disney princesses because it doesn't come from me.
We made it in time for the wedding and it was a lovely service. After the ceremony we had some time to kill so went to the shops for a few last minute Father's Day gifts. We went to Lizzy and wandered around in our wedding garb. It was quite amusing. Dave and I spent a nice time chatting about a few things - what to do with this blog, what would we do if we were just getting married now, what might happen next year - as we sat and had coffee and a muffin.
In a rare turn of events, we were early to the reception and got a carpark close to the doors. I wrote in the card and we wandered in without rushing. It was nice for a change. The wedding was between two people of Italian heritage and it was big. The groom was one of my good friends from uni and we felt privileged to be invited. The room was so large there was a screen on the wall projecting the events of the evening for all to see. There was a big dance floor and plenty of space for hundreds of people. The food was delicious and abundant. It was a real feast but more than that it was a real celebration. I was struck by the traditions of the culture and the number of children that were in attendance. There were loads of them and they were running amok and staying up too late but no one was phased by them or worried about them, at least that's the way it appeared. The children were just as much a part of the family celebration. It was a challenge to me because it's not the way I think. Perhaps I need to embrace some Italian views on parenting, children and family.
We left late, snuck into my parent's place and plucked our girls out of bed and eventually got into bed ourselves just after 1, leaving us with about 5 hours sleep before Father's Day!
Wednesday, September 1, 2010
Vinnie's, turkey and 50c
Tuesday this week was a good day for me. I was at work and that in itself was quite good. The sun was out and it was very pleasant, a taste of spring. I went for a walk at lunchtime up to the Vinnie's on The Parade. I spent too long there and ended up being late back to work, however I did score 11 items of clothing, most of which are brand name of some description (Country Road, Witchery, Levis etc) for $147. A few of these items were trousers for me that fit so I don't have to keep wearing my maternity jeans everyday. They are comfy but when you are nowhere near pregnant it's not really allowed.
On my way back from Vinnie's I popped into a 'real food cafe' or something like that. I purchased a smoked turkey, brie, pear chutney and baby spinach brown bread roll. The roll was a density I like (more on the solid side, not too fluffy) and it was flat, which I also prefer over rolls with a big round top. I ate the roll back at work and it was delicious. The price was slightly hefty but I will venture back there one day I think as the roll was a treat.
To top it off when the shop assistant gave me my fifty cents change, it was a 2010 50 cent piece that I hadn't seen yet and didn't have in my collection. I put it safely away in my bag, not in my purse so that it wouldn't be spent.
Great day, great day.
On my way back from Vinnie's I popped into a 'real food cafe' or something like that. I purchased a smoked turkey, brie, pear chutney and baby spinach brown bread roll. The roll was a density I like (more on the solid side, not too fluffy) and it was flat, which I also prefer over rolls with a big round top. I ate the roll back at work and it was delicious. The price was slightly hefty but I will venture back there one day I think as the roll was a treat.
To top it off when the shop assistant gave me my fifty cents change, it was a 2010 50 cent piece that I hadn't seen yet and didn't have in my collection. I put it safely away in my bag, not in my purse so that it wouldn't be spent.
Great day, great day.
Every player wins a prize
On Saturday we ventured to the Gawler Show. We loaded Maesie and Elsie into our big pram/bike carriage and walked round to the show. It was much as I remembered it. A few rides, a few showbags, chickens, sheep, cattle, horses, restored machinery chugging away, the rec centre displaying handicrafts. Ferrets. Crazies.
We all enjoyed looking at the ducks, chickens, roosters etc. There were some very big birds in there and some weird looking ones too. We checked out the champion birds - they looked pretty good to me. Fine specimens.
I require 'Hot American donuts... making, baking all the while' as part of my show experience so I lined up to get a couple of hot beverages and 4 donuts. Many minutes later I discovered that the 'Zoom' brand of the outlet was a misnomer and they were in fact less than zoomy and would have been better with 'We take our sweet arse time' plastered on their van. That's probably too long though and not very catchy.
Once we had aged about a year and had finally received our beverages and donuts, we headed over to check out what was happening in the 'arena'. Horses jumping over stuff. Maesie was fairly impressed but I'm not overly keen about horses. We enjoyed our donuts, Elsie wiped her hands a million times with a wet-one and then we moved on.
The ferris wheel beckoned and Dave and Maesie enjoyed the longest ride in history as the operator/carnie tuned out and lost track of who needed to get off. I very nearly thought of wandering over, tapping him on the shoulder and asking him to let them off. It wasn't necessary though. They were released and we went back to the other side of the show to get a showbag.
About three hours later we left and walked home again. Overall it wasn't a bad Gawler Show experience. The girls enjoyed themselves and we had a good afternoon out together.
We snapped some pictures of the carnie caravans out the back. What a weird life - driving around the country with a ride or sideshow on a truck and your caravan home hooked onto that. It's definitely not high on my list of things to try.
This photo is for anyone who knows Andy. This carnie's van sticks out over the drainage ditch. The back legs of the caravan are resting on milk crates, you can just see the red crates!
We all enjoyed looking at the ducks, chickens, roosters etc. There were some very big birds in there and some weird looking ones too. We checked out the champion birds - they looked pretty good to me. Fine specimens.
I require 'Hot American donuts... making, baking all the while' as part of my show experience so I lined up to get a couple of hot beverages and 4 donuts. Many minutes later I discovered that the 'Zoom' brand of the outlet was a misnomer and they were in fact less than zoomy and would have been better with 'We take our sweet arse time' plastered on their van. That's probably too long though and not very catchy.
Once we had aged about a year and had finally received our beverages and donuts, we headed over to check out what was happening in the 'arena'. Horses jumping over stuff. Maesie was fairly impressed but I'm not overly keen about horses. We enjoyed our donuts, Elsie wiped her hands a million times with a wet-one and then we moved on.
The ferris wheel beckoned and Dave and Maesie enjoyed the longest ride in history as the operator/carnie tuned out and lost track of who needed to get off. I very nearly thought of wandering over, tapping him on the shoulder and asking him to let them off. It wasn't necessary though. They were released and we went back to the other side of the show to get a showbag.
About three hours later we left and walked home again. Overall it wasn't a bad Gawler Show experience. The girls enjoyed themselves and we had a good afternoon out together.
We snapped some pictures of the carnie caravans out the back. What a weird life - driving around the country with a ride or sideshow on a truck and your caravan home hooked onto that. It's definitely not high on my list of things to try.
This photo is for anyone who knows Andy. This carnie's van sticks out over the drainage ditch. The back legs of the caravan are resting on milk crates, you can just see the red crates!
Poor neglected August
I see that I have only managed 4 posts during August. That's only one a week. I think this is due to two main factors: 1) there's not a great deal of 'news' to share and 2) I'm back to being busy again and don't have as much time to type things out. I think that I will continue until I have my next scan and then I will have a think about whether or not to keep going with this blog.
The last 10 days have included a number of highlights:
The most significant chemo related thing lately has been my eyes, still. The eye balls themselves aren't too bad and if they do get dry and itchy then I put drops in that help. It's more the eyelids that are crap. They are red and flakey. It looks like I've got bad eye-shadow on. And the flakey skin falls onto my glasses. It's like dandruff of the eyelids. I've tried a number of moisturising products, including Bio Oil and my usual face cream but they just sting and although they get rid of the flakey-ness, the redness gets worse. I am thinking of booking in to see my GP but I haven't done it yet. My eyes may also be burning because I'm tired from getting up two or three times each night to the precious treasures that are my children.
Here's a picture of my eye-shadowy eyes, but I don't have any makeup on. You can't really see the flakiness. That's probably a good thing.
The last 10 days have included a number of highlights:
- I caught up with a friend to discuss the menu for CV conference. We will be cooking for the weekend and we had a fun little chat about what we might try.
- Reporting income to Centrelink (hahaha......lowlight more like).
- Meeting with a group of ladies with ministery-type husbands to discuss and pray.
- Helping with a lunch at the Community House in Gawler.
- Going to the Gawler Show.
- Tuesday
The most significant chemo related thing lately has been my eyes, still. The eye balls themselves aren't too bad and if they do get dry and itchy then I put drops in that help. It's more the eyelids that are crap. They are red and flakey. It looks like I've got bad eye-shadow on. And the flakey skin falls onto my glasses. It's like dandruff of the eyelids. I've tried a number of moisturising products, including Bio Oil and my usual face cream but they just sting and although they get rid of the flakey-ness, the redness gets worse. I am thinking of booking in to see my GP but I haven't done it yet. My eyes may also be burning because I'm tired from getting up two or three times each night to the precious treasures that are my children.
Here's a picture of my eye-shadowy eyes, but I don't have any makeup on. You can't really see the flakiness. That's probably a good thing.
Sunday, August 22, 2010
A haircut and other activities
I've had a busy week. Wednesday Maesie wasn't feeling well so she didn't go to pre-school. I went to the dentist and there weren't any problems, which is good to know. I was able to get the car fixed, retaining my arms and legs, after it had started beeping "Service Vehicle soon" at us. While it was being fixed, I went to the hairdressers to see if they had time to tidy up my hair. There was one available and so she tidied up my newly acquired hair. My first haircut since it all fell out. Significant I suppose. She even put 'product' in it. Later in the afternoon I went to the gym to have my program and measurements reassessed. Nothing has changed. I remain the same size as I was before (as Dr Giri also pointed out), despite the running, riding and training I've been doing. Annoying. After that it was home for geography on 'Nephew Wednesday'.
Thursday I can't quite remember. I did RPM in the morning. It was hard work to get through the class. Bought a washing machine and had it delivered in the afternoon. Was grumpy most of the day. Very excited to have a new washing machine. Went to a board meeting which was pretty good.
I was still grumpy on Friday. Hard work with the girls in the morning. Dropped them off with their surrogate grandparents and headed into the city for a conference for work. The conference was good but I struggled a bit to stay awake. Nothing to do with the content and everything to do with me doing too much this week and staying up too late. There was a dinner at the end of the day and that was very delicious.
Third day running of grumpy on Saturday. I did body balance. Voted. Took the girls to meet my sister and her kids at a play cafe. It was nuts. Struggled home. Fed and cleaned the youngsters. Put them to bed. Watched a movie. Ate Chinese takeaway.
Today has been a much better day all round. I haven't been grumpy. The girls weren't psychos. I've done a few things and am a bit ready to start the week. Hopefully this week won't be as crazy as the last.
Not much of this is lymphoma related. The biggest thing lymphoma-wise for me at the moment is trying to sort out my weight/diet etc. At the gym on Wednesday it was suggested that I should be eating 100 kJ for each kg of body weight. That's a fair bit, especially if I am trying to loose some weight. But maybe it's too early to be trying to do that. Maybe my body is still freaking out and it needs more time and more food to get back to normal. I know that sometimes on diets the body can freak out and think it's going into starving conditions and so change its metabolism so that weight is not lost. Maybe that's sort of what's happening now. But maybe it isn't and if I eat lots perhaps I'll just keep stacking it on, which I would really rather not do. A conundrum. I'm thinking of seeing some hippy naturapath or some such, one who has had experience with other cancer patients, to try and get some more information about why my body is screwed. I need more explanations...
Thursday I can't quite remember. I did RPM in the morning. It was hard work to get through the class. Bought a washing machine and had it delivered in the afternoon. Was grumpy most of the day. Very excited to have a new washing machine. Went to a board meeting which was pretty good.
I was still grumpy on Friday. Hard work with the girls in the morning. Dropped them off with their surrogate grandparents and headed into the city for a conference for work. The conference was good but I struggled a bit to stay awake. Nothing to do with the content and everything to do with me doing too much this week and staying up too late. There was a dinner at the end of the day and that was very delicious.
Third day running of grumpy on Saturday. I did body balance. Voted. Took the girls to meet my sister and her kids at a play cafe. It was nuts. Struggled home. Fed and cleaned the youngsters. Put them to bed. Watched a movie. Ate Chinese takeaway.
Today has been a much better day all round. I haven't been grumpy. The girls weren't psychos. I've done a few things and am a bit ready to start the week. Hopefully this week won't be as crazy as the last.
Not much of this is lymphoma related. The biggest thing lymphoma-wise for me at the moment is trying to sort out my weight/diet etc. At the gym on Wednesday it was suggested that I should be eating 100 kJ for each kg of body weight. That's a fair bit, especially if I am trying to loose some weight. But maybe it's too early to be trying to do that. Maybe my body is still freaking out and it needs more time and more food to get back to normal. I know that sometimes on diets the body can freak out and think it's going into starving conditions and so change its metabolism so that weight is not lost. Maybe that's sort of what's happening now. But maybe it isn't and if I eat lots perhaps I'll just keep stacking it on, which I would really rather not do. A conundrum. I'm thinking of seeing some hippy naturapath or some such, one who has had experience with other cancer patients, to try and get some more information about why my body is screwed. I need more explanations...
Monday, August 16, 2010
A well dressed doctor
Doctor: (flicking from the back to the front of a medical file, slightly puzzled) You've put on 15 kilograms since November.
Patient: (annoyed) Yeah, I know! And I'm not happy about it. Your anti-sickness drugs were too good and I didn't have any trouble eating!
Doctor: Haven't you been back to exercising at the gym?
Patient: (still annoyed) Yes. And it hasn't done anything.......Now, what about my dry eyes?
A short scene from a drama I've been working on. The part of the doctor was played by Dr Giri today and the part of the patient was played by me. Apart from this brief exchange regarding my weight gain, there is not a great deal to report from my appointment. Blood results are fine. My eye dryness may be due to chemo but there's not a whole lot to do. Drops for the inside, moisturiser for the eyelid on the outside. Dr Giri has had some troubles with his mobile phone plan (they called while I was there). I was thinking today that perhaps I should try and describe Dr Giri for you. Maybe I shouldn't because I've tried to keep most people anonymous-ish, but nevermind. I'm not too sure how old he is. Older than me, but not as old as my folks. Maybe 40ish? I'm terrible at guessing age..... He is a well dressed man with an interesting walk that I can't really describe, it has an element of 'swagger' in it. He has a fancy little pocket with his favourite pen (and I think pencil) in it. It is a fountain type pen. Dark blue ink. He has his phone in one of those little holstery things on his belt and his hands are ok. Fairly thin fingers with round ends. Not squidgy. He has a leather satchel bag with a long strap which he carries on his shoulder, with the strap across his chest, when on the move. I would say he's neither tall nor short and fairly lean, but not skinny. I think he wears glasses but for all of my other observations, I can't be sure about this one. The name Giri is a bit of a give away but he does have some sort of Indian-like (picking nationalities, like ages, is another disaster area of mine) background displayed in brown skin, black hair and an accent. Not sure why all this matters really but just thought it should be noted. My doctor is not a tall old man with white hair, fat fingers and sensible shoes.
Patient: (annoyed) Yeah, I know! And I'm not happy about it. Your anti-sickness drugs were too good and I didn't have any trouble eating!
Doctor: Haven't you been back to exercising at the gym?
Patient: (still annoyed) Yes. And it hasn't done anything.......Now, what about my dry eyes?
A short scene from a drama I've been working on. The part of the doctor was played by Dr Giri today and the part of the patient was played by me. Apart from this brief exchange regarding my weight gain, there is not a great deal to report from my appointment. Blood results are fine. My eye dryness may be due to chemo but there's not a whole lot to do. Drops for the inside, moisturiser for the eyelid on the outside. Dr Giri has had some troubles with his mobile phone plan (they called while I was there). I was thinking today that perhaps I should try and describe Dr Giri for you. Maybe I shouldn't because I've tried to keep most people anonymous-ish, but nevermind. I'm not too sure how old he is. Older than me, but not as old as my folks. Maybe 40ish? I'm terrible at guessing age..... He is a well dressed man with an interesting walk that I can't really describe, it has an element of 'swagger' in it. He has a fancy little pocket with his favourite pen (and I think pencil) in it. It is a fountain type pen. Dark blue ink. He has his phone in one of those little holstery things on his belt and his hands are ok. Fairly thin fingers with round ends. Not squidgy. He has a leather satchel bag with a long strap which he carries on his shoulder, with the strap across his chest, when on the move. I would say he's neither tall nor short and fairly lean, but not skinny. I think he wears glasses but for all of my other observations, I can't be sure about this one. The name Giri is a bit of a give away but he does have some sort of Indian-like (picking nationalities, like ages, is another disaster area of mine) background displayed in brown skin, black hair and an accent. Not sure why all this matters really but just thought it should be noted. My doctor is not a tall old man with white hair, fat fingers and sensible shoes.
Thursday, August 12, 2010
Sunday, bloody Sunday
I have found that by around 6 or 7 pm on Sunday night I am very pathetic. I sit on the couch and that's it. I feel really cold all the way to my bones, despite wearing trackies, uggboots and three layers under my polar fleece, and feel achy. This may look very similar to man-sick but I think it's still a chemo thing, particularly as I am not a man. It could possibly have something to do with being busy, doing too much and spending time around two small children. I'm sure they are contributing factors. David thought it should be captured for all to see, so here's me on Sunday night.
It's a real pain because that's when I want to be tidying up, getting ready for the week ahead and it just doesn't happen. We start off with the house in a mess and never quite recover....
I need to remember to have a blood test tomorrow because I have a check-up appointment with Dr Giri on Monday. I haven't got much to ask him about but I will mention my eyes because they are dry and itchy, inside and out every now and again. It could be in no way related to lymphoma or chemo and he may not really care and tell me to go and see my GP but nonetheless, I shall tell him.
On a culinary front, Dave and I recently tried cooking and eating fennel. It was interesting, quite tasty and may get another guernsey in our house. I have also cooked caramelised onions a couple of times and they are delicious.
It's a real pain because that's when I want to be tidying up, getting ready for the week ahead and it just doesn't happen. We start off with the house in a mess and never quite recover....
I need to remember to have a blood test tomorrow because I have a check-up appointment with Dr Giri on Monday. I haven't got much to ask him about but I will mention my eyes because they are dry and itchy, inside and out every now and again. It could be in no way related to lymphoma or chemo and he may not really care and tell me to go and see my GP but nonetheless, I shall tell him.
On a culinary front, Dave and I recently tried cooking and eating fennel. It was interesting, quite tasty and may get another guernsey in our house. I have also cooked caramelised onions a couple of times and they are delicious.
Friday, August 6, 2010
Farewell, brown hoodie
I realised the other day that I have neglected to mention that while we were in the Grampians I attempted to put on my favourite daggy old brown hoodie and the zipper snapped in half and fell off. The zipper already had a paper clip on it to pull it up and down because the original one broke a couple of years ago but to have the whole zip just fall off was a bit disturbing. I think I'd had the jacket for more than four years. I got it while I was pregnant with Maesie I think, with the thought that it might fit around my growing guts. It had a fairly good life. I wore it a great deal, probably too much really as it was not attractive. Very comfy though. The ribbing on the cuffs had quite a few holes and it's probably time to say goodbye. I just had a thought - maybe I could sew it together down the front and just put it on like a jumper? There's life in the old girl yet.
Last weekend was good - gym on Saturday morning, a 3 y.o. birthday party in the afternoon followed by the Trinity College Foundation Dinner in the city. I was pretty tired by the end of the day but I was ok. The girls stayed with grandma and grandpa after the party and had a sleepover so we went to pick them up after church on Sunday. It was nice to go to church without them. So easy and no distractions.
On Tuesday this week, August 3, I combed my hair for the first time. I'm not sure why I haven't before now and I'm not sure why I did on that day in particular but I feel it is a significant moment. I have enough hair to run a comb through. It's weird now to think that not so long ago I didn't have any hair. I see photos of myself without hair and it's strange. It's just a memory now and one that is already fading. How can that be? How can chemo be such a fading memory so quickly? It seems that way for me at least - maybe it's not so quickly forgotten by those around me.
On Wednesday this week our oldest nephew came round for some tutoring. He goes to the school where Dave works so came home with Dave after work and stayed the night. We got through a bit of work and it was nice to have him around. I think we're going to try catching up most Wednesdays to help him get through a bit of work.
Last night (Thursday) Dave and I went to the opening night of the College musical, 'Guys and Dolls'. I haven't been to a school musical for quite a while and I wasn't quite sure how it would be. It was quite good. Fairly enjoyable. A few blips to iron out. I was hobbling around a bit and had some trouble with the stairs. I felt like if anyone saw me leaning heavily on the rail and Dave and knew anything about the past few months they might have thought 'Poor Beth, look at her struggling along'. The truth is that I did City to Bay training at the gym on Wednesday and did loads of step-ups, squats and lunges and killed my legs (again). It was good to see friends and colleagues and a few teachers I haven't seen for a while too. We've been doing quite a few things with the good old Trinity College lately and although it's a bit corny, we're both happy to be part of the community. I guess the place should be of some significance to us both as it's where we met. Ohhhhhh, shucks.
The last thing of note today is that it is my birthday. It has been a good day for the following reasons:
1. Elsie did not wake up during the night. She woke up around 6:40 when Dave got in the shower. I had a good sleep and woke up feeling good. (Maesie didn't wake through the night either)
2. The girls woke up in a good mood.
3. I got some nice pressies.
4. I went to Starplex. I wasn't in too much of a rush, there were carparks, I got into RPM and the teacher was one of my favourites.
5. I baked a delicious chocolate cake.
6. I ate some of the delicious chocolate cake.
7. David wrote me a lovely note/letter.
8. David made a delicious dinner.
9. We watched a movie (without being interrupted by the children).
10. I got a few jobs done.
Tomorrow it is no longer my birthday so I expect the girls to wake up again and everything will be as it was before..... It's been nice to have such a lovely day though.
I did have the thought today in the shower, that although things are going along well and I feel okay and can do most things I used to and I am getting back to life as it was before, I haven't had the next scan yet. I don't have the all clear. I have the almost all clear, but that's not the same. I could go in at the end of September and have everything go pear shaped again because there's still active disease. I'm not home and hosed. Even then, I'm sort of not sure I'll believe it if they say I'm okay. This cancer stuff sure messes with your head - inside and out.
Other random things of note:
Last weekend was good - gym on Saturday morning, a 3 y.o. birthday party in the afternoon followed by the Trinity College Foundation Dinner in the city. I was pretty tired by the end of the day but I was ok. The girls stayed with grandma and grandpa after the party and had a sleepover so we went to pick them up after church on Sunday. It was nice to go to church without them. So easy and no distractions.
On Tuesday this week, August 3, I combed my hair for the first time. I'm not sure why I haven't before now and I'm not sure why I did on that day in particular but I feel it is a significant moment. I have enough hair to run a comb through. It's weird now to think that not so long ago I didn't have any hair. I see photos of myself without hair and it's strange. It's just a memory now and one that is already fading. How can that be? How can chemo be such a fading memory so quickly? It seems that way for me at least - maybe it's not so quickly forgotten by those around me.
On Wednesday this week our oldest nephew came round for some tutoring. He goes to the school where Dave works so came home with Dave after work and stayed the night. We got through a bit of work and it was nice to have him around. I think we're going to try catching up most Wednesdays to help him get through a bit of work.
Last night (Thursday) Dave and I went to the opening night of the College musical, 'Guys and Dolls'. I haven't been to a school musical for quite a while and I wasn't quite sure how it would be. It was quite good. Fairly enjoyable. A few blips to iron out. I was hobbling around a bit and had some trouble with the stairs. I felt like if anyone saw me leaning heavily on the rail and Dave and knew anything about the past few months they might have thought 'Poor Beth, look at her struggling along'. The truth is that I did City to Bay training at the gym on Wednesday and did loads of step-ups, squats and lunges and killed my legs (again). It was good to see friends and colleagues and a few teachers I haven't seen for a while too. We've been doing quite a few things with the good old Trinity College lately and although it's a bit corny, we're both happy to be part of the community. I guess the place should be of some significance to us both as it's where we met. Ohhhhhh, shucks.
The last thing of note today is that it is my birthday. It has been a good day for the following reasons:
1. Elsie did not wake up during the night. She woke up around 6:40 when Dave got in the shower. I had a good sleep and woke up feeling good. (Maesie didn't wake through the night either)
2. The girls woke up in a good mood.
3. I got some nice pressies.
4. I went to Starplex. I wasn't in too much of a rush, there were carparks, I got into RPM and the teacher was one of my favourites.
5. I baked a delicious chocolate cake.
6. I ate some of the delicious chocolate cake.
7. David wrote me a lovely note/letter.
8. David made a delicious dinner.
9. We watched a movie (without being interrupted by the children).
10. I got a few jobs done.
Tomorrow it is no longer my birthday so I expect the girls to wake up again and everything will be as it was before..... It's been nice to have such a lovely day though.
I did have the thought today in the shower, that although things are going along well and I feel okay and can do most things I used to and I am getting back to life as it was before, I haven't had the next scan yet. I don't have the all clear. I have the almost all clear, but that's not the same. I could go in at the end of September and have everything go pear shaped again because there's still active disease. I'm not home and hosed. Even then, I'm sort of not sure I'll believe it if they say I'm okay. This cancer stuff sure messes with your head - inside and out.
Other random things of note:
- We have picked 3 snow peas off our vine/bush/plant out the back. They have been delicious. There would have been more but we didn't make enough of a frame for them to climb up and some of the ends snapped off.
- I have lost about 1.5 kilos. It's a start I guess but it's slow going.
Friday, July 30, 2010
To run or not to run.
My sister got cranky at me for not posting anything for over a week but there isn't much to mention at the moment.
I had a good week energy-wise and got to the gym a few times. I am considering doing the City to Bay run in September but I've only got about 6 weeks to train so I'm not sure how that would go. I might do six kms instead of 12. Or maybe I'll just sit home and do not much. Last year the run was in between first becoming aware of the lump at the bottom of my neck and being diagnosed. It was a bit touch and go whether I'd do that run too. What a crazy year it's been.
Last weekend our nephew stayed over and we all had quite a good time. The girls loved having him around and Maesie has said many times during the week that she was grumpy/sad/upset because she missed him. I think she's using it for a convenient cover-up but it must have meant a fair bit to her regardless. She's also been carrying around a photo of him holding her when she was a baby as some kind of reminder. I should add that she does see this cousin fairly often - it's not like he came from interstate or anything. Crazy kids.
On Saturday I attempted to make brownies. I had three helpers - aged 13, 4 and 2. It was horrid. Everyone wanted to lick everything and help add eggs and mix and lick everything and taste it. Eventually I got it all into the pans and into the oven and had three satisfied helpers with large chocolate smiles. On Saturday night I went to a fundraising event for the Leukaemia Foundation. It was held by the daughter of one of the guys I mentioned some time ago - the guy I spoke to once in the Day Centre and then shared the car with and we had to take him back to the hospital. She (the daughter) is a good friend of one of my friends. It was a stamping/cardmaking/scrapbooking mini event with a few raffles and things. It was a good night and all up I think she raised about $900 for the Foundation.
Sunday was a good day. After church Maesie went to play at another family's house with their two girls and their son came home with us to play computer games with our nephew. Around 4pm Maesie, her two friends and their mum (my friend, but not the one from Saturday) came to our place. They stayed for tea and the nine of us had a good evening, although it was slightly crazy.
Back to work/school/pre-school/day care on Monday. Work again for me on Tuesday. Wednesday I did City to Bay training at the gym and then a few bits and pieces at home. Thursday I did rpm and then child-rearing duties. Today my legs are sore and it is hard to kneel down or squat or sit and there's a fair bit of kneeling and squatting to be done with the youngsters. It's been a fairly good day - we ventured out for a few things and had the normal share of trials with refusal to sit in carseats, requirements for teddy, pulled hair, spills etc.
The next thing on my medical 'plate' is an appointment with Dr Giri on August 16. It's just a check up I think and I hope nothing else comes of it. I don't really have anything exciting to tell him.
I had a good week energy-wise and got to the gym a few times. I am considering doing the City to Bay run in September but I've only got about 6 weeks to train so I'm not sure how that would go. I might do six kms instead of 12. Or maybe I'll just sit home and do not much. Last year the run was in between first becoming aware of the lump at the bottom of my neck and being diagnosed. It was a bit touch and go whether I'd do that run too. What a crazy year it's been.
Last weekend our nephew stayed over and we all had quite a good time. The girls loved having him around and Maesie has said many times during the week that she was grumpy/sad/upset because she missed him. I think she's using it for a convenient cover-up but it must have meant a fair bit to her regardless. She's also been carrying around a photo of him holding her when she was a baby as some kind of reminder. I should add that she does see this cousin fairly often - it's not like he came from interstate or anything. Crazy kids.
On Saturday I attempted to make brownies. I had three helpers - aged 13, 4 and 2. It was horrid. Everyone wanted to lick everything and help add eggs and mix and lick everything and taste it. Eventually I got it all into the pans and into the oven and had three satisfied helpers with large chocolate smiles. On Saturday night I went to a fundraising event for the Leukaemia Foundation. It was held by the daughter of one of the guys I mentioned some time ago - the guy I spoke to once in the Day Centre and then shared the car with and we had to take him back to the hospital. She (the daughter) is a good friend of one of my friends. It was a stamping/cardmaking/scrapbooking mini event with a few raffles and things. It was a good night and all up I think she raised about $900 for the Foundation.
Sunday was a good day. After church Maesie went to play at another family's house with their two girls and their son came home with us to play computer games with our nephew. Around 4pm Maesie, her two friends and their mum (my friend, but not the one from Saturday) came to our place. They stayed for tea and the nine of us had a good evening, although it was slightly crazy.
Back to work/school/pre-school/day care on Monday. Work again for me on Tuesday. Wednesday I did City to Bay training at the gym and then a few bits and pieces at home. Thursday I did rpm and then child-rearing duties. Today my legs are sore and it is hard to kneel down or squat or sit and there's a fair bit of kneeling and squatting to be done with the youngsters. It's been a fairly good day - we ventured out for a few things and had the normal share of trials with refusal to sit in carseats, requirements for teddy, pulled hair, spills etc.
The next thing on my medical 'plate' is an appointment with Dr Giri on August 16. It's just a check up I think and I hope nothing else comes of it. I don't really have anything exciting to tell him.
Wednesday, July 21, 2010
Thyroid results and rocks
Ah, I started with the blood test in the last post but never mentioned the results. I went to the doctor today - my GP who sent me off for a biopsy and x-rays all those months ago - to find out the results of the test. As I feared, there does not appear to be a problem with my thyroid. I am just fat from steroids, sitting on my butt too much doing nothing and eating too much. So there will be no pill to help me lose kilos, just hard work burning more energy than I consume. Crapola. I did find it interesting to see that my result was back down to 2.5 which is closer to other tests I've had in the past, rather than the 3.6 it was last time. I guess everything freaks out a bit when it gets bombarded with poison, thyroid included.
I know I have mentioned my grandpa a few times lately but I keep being reminded of him. Not sure why. I have taken to having two cups of tea in the mornings sometimes, something he always used to do. I also thought of him many times while we were in the Grampians. He was a geologist and would always tell my sister and I about rocks when we went walking. Now I am telling Maesie about rocks when we go walking. What a boring geeky nanna I am. The mountains and rock formations of the Grampians really are impressive though and I could just imagine talking to Grandpa about them and how excited he would have been. The rocks also remind me about how beautiful and awesome (in the true sense of the word, not the everyday teenage use of the word) nature is and thus how much more so is the Creator of it all.
I know I have mentioned my grandpa a few times lately but I keep being reminded of him. Not sure why. I have taken to having two cups of tea in the mornings sometimes, something he always used to do. I also thought of him many times while we were in the Grampians. He was a geologist and would always tell my sister and I about rocks when we went walking. Now I am telling Maesie about rocks when we go walking. What a boring geeky nanna I am. The mountains and rock formations of the Grampians really are impressive though and I could just imagine talking to Grandpa about them and how excited he would have been. The rocks also remind me about how beautiful and awesome (in the true sense of the word, not the everyday teenage use of the word) nature is and thus how much more so is the Creator of it all.
Lavatory thoughts, tears and tights
On Monday I went for a blood test. I went to the IMVS collection place at 'The Avenues' at Stepney. I thought "It won't be too busy, I'll just pop in there on my way to work". I thought wrong. I waited for about 50 minutes before it was my turn. I think I heard the complete CD that was playing - some guy I'd never heard of (I asked the nurse about it while she was trying to jab me) who sounded a bit Bob Dylan-ish and sang in about 5 different languages. I did a little people-watching and my favourite was a young lady (maybe she was 18?) who came in with her mum (I assume) and went to the lavatory. When she came out, her skirt - which was above the knee and made from a fabric suited more to the summer months - was partially tucked into her skin-coloured nylon tights, showing her beige briefs to the waiting room. Her mother didn't notice because it was on the opposite side from her so she didn't say anything. Neither did I. I wasn't sure how to go about it. Call out across the room "Hey lady, your skirt's stuck in your tights"? Walk across the room and have a quiet word? Awkward either way. So I am left wondering if and how she ever found out and how long she spent showing the world her underpants. Silly lady for wearing unseasonal fabric, for not being aware of a cold breeze on her upper thigh and for not checking her skirt was down before she left the cubicle. Even I, of limited skirt wearing experience, know that the final check is crucial.
I was quite surly from Sunday to Tuesday this week. I should have typed this yesterday when I still had the grumps because then it would have really been a 'from the heart' whinge. Today I feel better so there's not much to say about it. I did realise there was most likely a hormonal influence, which always tends to amplify troubles. I have been down and depressed and a bit teary - a few tears on Monday night, a few in the lav at work yesterday (most unglamorous, I know, but I am hardly known for glamour). Don't all get in a flap - I don't think there's much to be concerned about. It mainly all comes from lots of thoughts still in my head and not being able to do much about many of them. Things I want to do, things that are stopping me doing stuff, thoughts about 'survivorship' and whether or not all this psychological junk I have to wade through is what they talk about. Everyone's got those kind of thoughts wandering round in their heads though, haven't they? Could do this, want to do that, can't do that yet, missed my opportunity for that, glad I had kids, pity I've got kids, should have traveled, wish I could...... I guess it's all a bit amplified for me at the moment though because I had a kick up the arse to highlight the fact that I don't really know how long I've got to do stuff on this planet.
Whilst on the lav in Halls Gap I did have a little realisation. I guess I knew it anyway, but for some reason it was made clearer to me. My purpose during my years on Earth, I believe, is to bring glory to God. This can be done in many and varied ways but it kind of helps to test my other thoughts/wants/dreams against this to see if they fit. I struggle though to find the time/make the time to sit down and work it all out. I feel like I need a week in some secluded hut in the middle of no-where with a delightful wood fire, plenty of tea and biscuits and splendid scenery just to sit down and write stuff and think and make lists and sort it all out. But I can't do that because I'd feel terribly selfish and guilty, plus I might never want to come back. I'll just have to settle for 5 minutes here and there surrounded by junk and weeds at Gum Crescent.
I was quite surly from Sunday to Tuesday this week. I should have typed this yesterday when I still had the grumps because then it would have really been a 'from the heart' whinge. Today I feel better so there's not much to say about it. I did realise there was most likely a hormonal influence, which always tends to amplify troubles. I have been down and depressed and a bit teary - a few tears on Monday night, a few in the lav at work yesterday (most unglamorous, I know, but I am hardly known for glamour). Don't all get in a flap - I don't think there's much to be concerned about. It mainly all comes from lots of thoughts still in my head and not being able to do much about many of them. Things I want to do, things that are stopping me doing stuff, thoughts about 'survivorship' and whether or not all this psychological junk I have to wade through is what they talk about. Everyone's got those kind of thoughts wandering round in their heads though, haven't they? Could do this, want to do that, can't do that yet, missed my opportunity for that, glad I had kids, pity I've got kids, should have traveled, wish I could...... I guess it's all a bit amplified for me at the moment though because I had a kick up the arse to highlight the fact that I don't really know how long I've got to do stuff on this planet.
Whilst on the lav in Halls Gap I did have a little realisation. I guess I knew it anyway, but for some reason it was made clearer to me. My purpose during my years on Earth, I believe, is to bring glory to God. This can be done in many and varied ways but it kind of helps to test my other thoughts/wants/dreams against this to see if they fit. I struggle though to find the time/make the time to sit down and work it all out. I feel like I need a week in some secluded hut in the middle of no-where with a delightful wood fire, plenty of tea and biscuits and splendid scenery just to sit down and write stuff and think and make lists and sort it all out. But I can't do that because I'd feel terribly selfish and guilty, plus I might never want to come back. I'll just have to settle for 5 minutes here and there surrounded by junk and weeds at Gum Crescent.
Sunday, July 18, 2010
Back to Gawler
Home again, home again, jiggity jig.
We drove home yesterday without event. A stop for lunch at Bordertown, a few DVDs (Pocoyo, Aladdin and the Forty Thieves and Monsters Inc), some pop-offs from Teddy and we made it to Gawler. Our house was beautifully clean and tidy thanks to our very able house-sitter. Pity it only took us about 5 minutes to mess it up once we unpacked the car and the girls played for ten seconds.
Before we left we did do a few other activities on Thursday and Friday: a couple more walks, a fire and toasting marshmallows, playing on the playground, Baldur's Gate for Dave, afternoon movies for Maesie.
Today I am shattered. I've fallen asleep sitting up on the couch about three times this afternoon. I just have no real urge to do anything. I can't even be bothered getting up. I'm still on the couch, I just asked Dave to pass me my computer. I will have to get up soon and do a few things before going to bed and it's going to be hard work to haul myself up.
We drove home yesterday without event. A stop for lunch at Bordertown, a few DVDs (Pocoyo, Aladdin and the Forty Thieves and Monsters Inc), some pop-offs from Teddy and we made it to Gawler. Our house was beautifully clean and tidy thanks to our very able house-sitter. Pity it only took us about 5 minutes to mess it up once we unpacked the car and the girls played for ten seconds.
Before we left we did do a few other activities on Thursday and Friday: a couple more walks, a fire and toasting marshmallows, playing on the playground, Baldur's Gate for Dave, afternoon movies for Maesie.
Today I am shattered. I've fallen asleep sitting up on the couch about three times this afternoon. I just have no real urge to do anything. I can't even be bothered getting up. I'm still on the couch, I just asked Dave to pass me my computer. I will have to get up soon and do a few things before going to bed and it's going to be hard work to haul myself up.
Non-serene Victoria
We're in the Grampians. I did bring my mobile internet connection but there is no service here (no thanks to Vodafone). I'll have to try and find some coverage and post this later.
We travelled over on Monday and survived the car trip without too many hassles, thanks to a DVD player and a new Pocoyo DVD. The girls put up with six hours in the car and we only stopped twice. At one point we put on a CD of the BFG being read. Maesie fell asleep but Dave and I enjoyed it. We did almost hit a kangaroo on the last stretch into Halls Gap but Dave skilfully avoided hitting the beastie.
We went on a little walk on Tuesday morning before it started to rain and after lunch Elsie had a rest, Maesie and all her friends watched 'Monsters Inc' and Dave installed Baldur's Gate on his computer.
Victorian school holidays have finished and there aren't many people in the caravan park. It would be quite peaceful except there has been a bobcat out the front of our cabin doing some demolition work on both Tuesday and Wednesday afternoons. How's the serenity?!
On Wednesday morning we attempted to get to the top of Mount William in a quest to see snow. We didn't make it to the very top because it was ultra cold and Maesie wasn't keen to push on. I would have liked to get to the top but it was probably wisest for many reasons to cut our expedition short. I felt a bit ripped off though, like I have a couple of times when we've been out at friends' and about to play cards and the girls have woken up and we've gone home. Just part of parenting that I am still not used to - the continued setting aside of my own preferences in order to accommodate the small people in my care. I know I still need to ensure I meet my own needs and arrange to play cards unhindered if that's what I really want to do (which it isn't just yet), but you get what I mean.
Back at the car, we had a little picnic in the boot.
I have been reading a book entitled 'How to Read Your Child Like a Book'. It has been quite helpful in thinking about how to approach Maesie and her bossyness and annoying ways because it explains why kids do things at particular ages. It has got me thinking that I am a better parent in theory than in practise. In theory it's all very interesting how children grow up and learn but day to day helping them along is a hard slog for me, which I am a bit frustrated by because I would like to be able to enjoy my days rather than struggle through them, dragging youngsters towards independence. I still believe they are a blessing from the Lord, just a rather complex blessing.
Wednesday, July 7, 2010
Eighties memories
I see it is a week since I last wrote. There's not a whole lot to say. Very little related to lymphoma anyway - only that I am attempting to get back to normal and keep getting tripped up by fatigue.
I shan't recall all the happenings of the last week but will instead offer highlights.
We watched the movie 'Ghost Town' on Friday night. We thought it was a good movie and had a good giggle over that one.
We had dinner with six other couples on Saturday night and it was a lovely night out. We did take the girls with us this time though and Maesie woke up coughing and croaky just as we were about to play cards so we decided to go home. It was about 11pm anyway so probably time for us to be heading off but it was still a bit frustrating to not get to play cards because of youngsters. My sister and I probably cut short some of our parents' bridge nights, I'm not sure.
On Sunday afternoon we went to an afternoon tea to farewell some friends who are heading to Melbourne for missionary training. It was a pleasant afternoon - hot beverages, cupcakes, good company and conversation. I had made some biscuits and carrot cupcakes for the afternoon but the biscuits were not needed. On Sunday night I sandwiched them together with the left over cream cheese frosting from the cupcakes and then took them in to work on Monday. They went down a treat.
My sister ended up taking her 8 week old daughter to the Womens and Childrens Hospital on Monday night because she had a temperature that wouldn't go down. It ended up being a urinary tract infection and they left the hospital today but it meant that yesterday I was able to go and see my sister and niece both at lunchtime and after work. It was great to see them even though the circumstances weren't the best.
After leaving the hospital last night I circled the city a bit to find a park and then went to dinner at a splendid Chinese restaurant in Gouger St. The food was delicious and the company was, once more, delightful. Laughs, stories, catching up - it was all good. On the way home I cranked up the radio which at one point played T-Rex which always makes me remember fondly the eighties and my dad driving the trusty old Tarago.
My good mood was slightly dampened when I arrived home to find Dave snoozing on the couch with Maesie on his lap because she had coughed until she spewed and then freaked out a bit and wanted to wait up for me. She settled back to bed okay after I was home and then neither girl stirred until about quarter to 7 this morning. It was nice to have a reasonable block of sleep uninterrupted.
Today's excitement was going to see Toy Story 3. Dave and I took Maesie to the cinema for the first time. She was very excited and we all enjoyed the movie. It featured a pair of Ken shorts that also brought back fond memories of the eighties - playing Barbies with my sister. It also made me shed a tear or two as it feels like the end of an era in some weird way. My favourite quote came from Maesie today who said, about Andy playing with the toys, "He thinks they're pretend but they're real". My favourite observation from today was a man wearing desert boots. My Grandpa always used to wear desert boots so it was a little reminder of him and it made me chuckle.
My hair is growing back, as hair that isn't being attacked by chemo does however I am getting annoyed about it now. I just want my hair back. It's okay to not have hair while it's all happening but now that I am not having treatment I wish I could just look like a normal person. My hair almost looks like it could be a haircut of choice so that makes me feel slightly awkward when I am out and about. I feel like I need a sign around my neck that says "I didn't get this crappy haircut on purpose - I've just finished chemo". Maybe I'll print a T-shirt.
I shan't recall all the happenings of the last week but will instead offer highlights.
We watched the movie 'Ghost Town' on Friday night. We thought it was a good movie and had a good giggle over that one.
We had dinner with six other couples on Saturday night and it was a lovely night out. We did take the girls with us this time though and Maesie woke up coughing and croaky just as we were about to play cards so we decided to go home. It was about 11pm anyway so probably time for us to be heading off but it was still a bit frustrating to not get to play cards because of youngsters. My sister and I probably cut short some of our parents' bridge nights, I'm not sure.
On Sunday afternoon we went to an afternoon tea to farewell some friends who are heading to Melbourne for missionary training. It was a pleasant afternoon - hot beverages, cupcakes, good company and conversation. I had made some biscuits and carrot cupcakes for the afternoon but the biscuits were not needed. On Sunday night I sandwiched them together with the left over cream cheese frosting from the cupcakes and then took them in to work on Monday. They went down a treat.
My sister ended up taking her 8 week old daughter to the Womens and Childrens Hospital on Monday night because she had a temperature that wouldn't go down. It ended up being a urinary tract infection and they left the hospital today but it meant that yesterday I was able to go and see my sister and niece both at lunchtime and after work. It was great to see them even though the circumstances weren't the best.
After leaving the hospital last night I circled the city a bit to find a park and then went to dinner at a splendid Chinese restaurant in Gouger St. The food was delicious and the company was, once more, delightful. Laughs, stories, catching up - it was all good. On the way home I cranked up the radio which at one point played T-Rex which always makes me remember fondly the eighties and my dad driving the trusty old Tarago.
My good mood was slightly dampened when I arrived home to find Dave snoozing on the couch with Maesie on his lap because she had coughed until she spewed and then freaked out a bit and wanted to wait up for me. She settled back to bed okay after I was home and then neither girl stirred until about quarter to 7 this morning. It was nice to have a reasonable block of sleep uninterrupted.
Today's excitement was going to see Toy Story 3. Dave and I took Maesie to the cinema for the first time. She was very excited and we all enjoyed the movie. It featured a pair of Ken shorts that also brought back fond memories of the eighties - playing Barbies with my sister. It also made me shed a tear or two as it feels like the end of an era in some weird way. My favourite quote came from Maesie today who said, about Andy playing with the toys, "He thinks they're pretend but they're real". My favourite observation from today was a man wearing desert boots. My Grandpa always used to wear desert boots so it was a little reminder of him and it made me chuckle.
My hair is growing back, as hair that isn't being attacked by chemo does however I am getting annoyed about it now. I just want my hair back. It's okay to not have hair while it's all happening but now that I am not having treatment I wish I could just look like a normal person. My hair almost looks like it could be a haircut of choice so that makes me feel slightly awkward when I am out and about. I feel like I need a sign around my neck that says "I didn't get this crappy haircut on purpose - I've just finished chemo". Maybe I'll print a T-shirt.
Thursday, July 1, 2010
America - great to visit but don't get cancer there
I did RPM yesterday and today I am quite tired. This is crapola. I know I could experience fatigue for up to a year or so but I don't understand exactly why it keeps going for so long after the treatment. It doesn't seem to make sense to me. Stupid body should sort itself out.
Today I got up around 7:30 and had some breakfast and helped with feeding and dressing the small people. I waved Dave and the children off and then returned to bed to read for a while and then sleep for a while too. I got up again at 11am. That' s weird for me. I've kind of hauled myself around for the rest of the day. We did all venture down to the Munno this afternoon so that I could have an eye test and organise some new glasses. I am a tiny bit more blind in each eye. Yippee.
I have started reading a book by an American chick which is a compilation of lots of interviews she did with cancer patients in their twenties and thirties. It is an interesting book and different from most of the other cancer books I've read. What has struck me so far is that it is indeed a blessing to live in Australia and even though our health system is not flawless, it is pretty good. Medicare is a good system, for the most part. I have paid only a few dollars for a few tablets. I haven't paid for my scans or any of my chemo, which are crazy expensive drugs. I have paid in part because I have paid taxes and will pay them again in the future but I feel pretty lucky not to have the burden of having to sort out how I'm going to pay for the next round or any of that. In America it would not be that simple. People have to wade through excessive paperwork just to sort out how they are going to fund their treatment.
Today I got up around 7:30 and had some breakfast and helped with feeding and dressing the small people. I waved Dave and the children off and then returned to bed to read for a while and then sleep for a while too. I got up again at 11am. That' s weird for me. I've kind of hauled myself around for the rest of the day. We did all venture down to the Munno this afternoon so that I could have an eye test and organise some new glasses. I am a tiny bit more blind in each eye. Yippee.
I have started reading a book by an American chick which is a compilation of lots of interviews she did with cancer patients in their twenties and thirties. It is an interesting book and different from most of the other cancer books I've read. What has struck me so far is that it is indeed a blessing to live in Australia and even though our health system is not flawless, it is pretty good. Medicare is a good system, for the most part. I have paid only a few dollars for a few tablets. I haven't paid for my scans or any of my chemo, which are crazy expensive drugs. I have paid in part because I have paid taxes and will pay them again in the future but I feel pretty lucky not to have the burden of having to sort out how I'm going to pay for the next round or any of that. In America it would not be that simple. People have to wade through excessive paperwork just to sort out how they are going to fund their treatment.
Monday, June 28, 2010
Busy times with Dora
It was a crazy weekend, starting on Friday!
On Friday morning Dave and I went to the Trinity College Blackham Environmental Centre which is a block of native scrub up near my mum and dad's place. We went on a bus with some other Trinity folk and trundled up to have a look at the new facilities. There was tea and coffee and delicious morning tea treat, made by Trinity catering students of course! It was a good morning and nice to be there to see another part of Trinity. It's almost sad how much we still enjoy being part of the Trinity community.
After that we dashed home, picked up some spag bol we had made, dropped it off at the community house in Gawler for the community lunch, went to pick up the girls, went home for a couple of hours so that Elsie could have a rest and we could do a few things to prepare for her party, left home again to take the girls to grandma's before going to the RAH for my 4pm appointment. After my appointment we had to hang around for me to get a blood test, then back to grandma's to let her know the results and home again around 7.30pm. We did a few more jobs in preparation for Sunday and then went to bed.
I found the professor particularly interesting when he spoke about some of the advances that have been made in the treatment of some cancers. They've made a drug that is able to target only cancerous cells for a specific cancer. I'm pretty vague on the details I know, sorry, but it was a combo of the biochemistry and pharmacology I did at uni. So then I started to think about the possibility of doing research. Having a crack at a PhD and researching drugs. I'm not really sure it's for me though, it all takes too long. Years and years of work to find out one tiny thing. It's interesting once someone can give you the summary but I don't know that I'm made to chip away at something forever.
We had a good chat with a couple over lunch. The guy had myeloma and is preparing to have a stem cell transplant in the near future. It was great to share some jokes and tell stories with people who had experienced very similar things. Since we live in Adelaide, it was also not very surprising to find that they are good friends with a family that we know.
After the sessions we raced through the central markets to pick up a few things for Sunday then went to Grandma's to collect our children. Home briefly to bake a cake and tidy up a bit more. My parents came to our place and then we went out to a dinner party in Gawler. It was more delicious food and good company with some laughs thrown in. We did make it home and into bed before midnight.
Sunday started with church in the morning. We didn't dilly-dally after the service and instead came home to get ready for Elsie's second birthday party. I decorated the cake as a Dora the Explorer map with a forest, bridge and rocky mountains. It came out quite well.
We had around 20 adults and about a dozen children including three infants. It was a bit crazy. There were frankfurts, sausage rolls, cheezels, fairy bread, cupcakes, honey crackles - all good party foods. Maesie had a gazillion cheezels as she shoved them on all of her fingers over and over. After the party she came down fairly hard from a sugar/orange colour high.
After the party, Gawler West hosted the MacGillivray village. It was the best option at the time but I'm not sure I'll be rushing to host again. I might put a bid in for the 2012 village.
I flopped into a chair about 8pm on Sunday and struggled to get out of it to go to bed.
On Friday morning Dave and I went to the Trinity College Blackham Environmental Centre which is a block of native scrub up near my mum and dad's place. We went on a bus with some other Trinity folk and trundled up to have a look at the new facilities. There was tea and coffee and delicious morning tea treat, made by Trinity catering students of course! It was a good morning and nice to be there to see another part of Trinity. It's almost sad how much we still enjoy being part of the Trinity community.
After that we dashed home, picked up some spag bol we had made, dropped it off at the community house in Gawler for the community lunch, went to pick up the girls, went home for a couple of hours so that Elsie could have a rest and we could do a few things to prepare for her party, left home again to take the girls to grandma's before going to the RAH for my 4pm appointment. After my appointment we had to hang around for me to get a blood test, then back to grandma's to let her know the results and home again around 7.30pm. We did a few more jobs in preparation for Sunday and then went to bed.
On Saturday Dave and I went to the Hilton in Adelaide to the Leukaemia Foundation's Patient Education Day. There was a talk about clinical trials from a professor, a guy who had non-Hodgkin's lymphoma and his wife spoke of their experience and we also went to a session on diet and exercise during and after cancer. They were all interesting and worthwhile going to. In addition to that though, there was morning tea, lunch and afternoon tea which were all extremely delicious.
Dave and I each got a free pen with two exciting features - a squidgy grip section that can be moulded to the individual and a blue light that glows in the grip section every second time the pen is clicked on. Only thing better than a free pen is a free pen with features.
As with any conference/education session there were the regular characters:
- the sleeper - one lady was so asleep her head would gradually get lower and lower and then she would sit up again (still eyes closed) and then it would go down again. It was slightly amusing, particularly when another lady next to her asked a question of the speaker and the sleeper was not roused at all.
- people who ask weird personal questions - one guy started his question with 'my mum has altzeimers...'
- people who are too helpful - there were people in the audience who liked to throw in their two bobs worth in answer to a question directed at the speaker. 'When my iron was low.... blah blah'. Thanks, but no one asked you.
I found the professor particularly interesting when he spoke about some of the advances that have been made in the treatment of some cancers. They've made a drug that is able to target only cancerous cells for a specific cancer. I'm pretty vague on the details I know, sorry, but it was a combo of the biochemistry and pharmacology I did at uni. So then I started to think about the possibility of doing research. Having a crack at a PhD and researching drugs. I'm not really sure it's for me though, it all takes too long. Years and years of work to find out one tiny thing. It's interesting once someone can give you the summary but I don't know that I'm made to chip away at something forever.
We had a good chat with a couple over lunch. The guy had myeloma and is preparing to have a stem cell transplant in the near future. It was great to share some jokes and tell stories with people who had experienced very similar things. Since we live in Adelaide, it was also not very surprising to find that they are good friends with a family that we know.
After the sessions we raced through the central markets to pick up a few things for Sunday then went to Grandma's to collect our children. Home briefly to bake a cake and tidy up a bit more. My parents came to our place and then we went out to a dinner party in Gawler. It was more delicious food and good company with some laughs thrown in. We did make it home and into bed before midnight.
Sunday started with church in the morning. We didn't dilly-dally after the service and instead came home to get ready for Elsie's second birthday party. I decorated the cake as a Dora the Explorer map with a forest, bridge and rocky mountains. It came out quite well.
We had around 20 adults and about a dozen children including three infants. It was a bit crazy. There were frankfurts, sausage rolls, cheezels, fairy bread, cupcakes, honey crackles - all good party foods. Maesie had a gazillion cheezels as she shoved them on all of her fingers over and over. After the party she came down fairly hard from a sugar/orange colour high.
After the party, Gawler West hosted the MacGillivray village. It was the best option at the time but I'm not sure I'll be rushing to host again. I might put a bid in for the 2012 village.
I flopped into a chair about 8pm on Sunday and struggled to get out of it to go to bed.
Friday, June 25, 2010
Inconclusive
The results of my latest PET scan are inconclusive. Some small spots of activity are still hanging around but they could be due to my own good cells still cleaning up. We just have to keep hanging around and then have another scan in three months to see what's going on.
The doctor was surprised to see that I have put on quite a few kilos since I started treatment as he said most of his patients lose weight and don't have much of an appetite. I had a blood test to check for thyroid function so it will be interesting to see what that says. Maybe there will be more of an explanation to this than just too many sweets and custard.
That's about all at the moment. We're in a bit of a tizz about it I guess. Not too sure what this means for the next few months and for next year. I'm just going to keep plodding on and see how it goes.
The doctor was surprised to see that I have put on quite a few kilos since I started treatment as he said most of his patients lose weight and don't have much of an appetite. I had a blood test to check for thyroid function so it will be interesting to see what that says. Maybe there will be more of an explanation to this than just too many sweets and custard.
That's about all at the moment. We're in a bit of a tizz about it I guess. Not too sure what this means for the next few months and for next year. I'm just going to keep plodding on and see how it goes.
Tuesday, June 22, 2010
Pre-PET #2
I am typing the fastest blog so far. It's late and I have biscuits in the oven and once they're done and out, I am going to bed.
My fingers are pretty much normal now - not tingly or weird any more so that is quite nice.
I was really tired most of last week, possibly because I used up all my energy driving to and cooking in Burra a couple of Saturdays ago. My knees and elbows have been a bit achy though and when I get up from sitting down for a while, it takes a few steps to get going. I feel like an old lady. More nana evidence. Is now the time to mention I am also trying to find a pattern so that I can crochet a tea-cosy?
My hair is growing back in all locations which is an encouraging sign.
I have my scan tomorrow. I am hoping that because it has been delayed the result might be a bit more definitive. If there's active disease then it really will be active. Clean up has a better chance of being finished so hopefully there isn't a false positive. And if there is no active disease then there really is no active disease. I am going to see the doctor about the results on Friday so that will be an interesting appointment.
I have been at work yesterday and today. Shorter days, admittedly, but work nonetheless. It has been nice to be back. Good to see the people. Good to be working. Good to be getting some cash.
I am not looking forward to fasting for the scan tomorrow, nor am I looking forward to lying on the bed of the machine for about half an hour trying not to move. Grrr.
Biscuits done. Off to bed.
My fingers are pretty much normal now - not tingly or weird any more so that is quite nice.
I was really tired most of last week, possibly because I used up all my energy driving to and cooking in Burra a couple of Saturdays ago. My knees and elbows have been a bit achy though and when I get up from sitting down for a while, it takes a few steps to get going. I feel like an old lady. More nana evidence. Is now the time to mention I am also trying to find a pattern so that I can crochet a tea-cosy?
My hair is growing back in all locations which is an encouraging sign.
I have my scan tomorrow. I am hoping that because it has been delayed the result might be a bit more definitive. If there's active disease then it really will be active. Clean up has a better chance of being finished so hopefully there isn't a false positive. And if there is no active disease then there really is no active disease. I am going to see the doctor about the results on Friday so that will be an interesting appointment.
I have been at work yesterday and today. Shorter days, admittedly, but work nonetheless. It has been nice to be back. Good to see the people. Good to be working. Good to be getting some cash.
I am not looking forward to fasting for the scan tomorrow, nor am I looking forward to lying on the bed of the machine for about half an hour trying not to move. Grrr.
Biscuits done. Off to bed.
Tuesday, June 15, 2010
Fatigue, kitchen chaos and American football
I am getting frustrated with the current state of things. I can function fairly well for most of the day but around about 7 or 8 pm, I run out of steam and just can't function any more. It is a real effort to haul myself off the couch and do anything. It is tricky because I would like to keep powering on but I just can't.
It is highly likely that I am pushing myself too much and trying to do too much but I'm not keen on taking it easy. The latest example of me over-doing things occurred on Saturday. I drove to Burra early in the morning to help a friend cook for a camp. I hadn't cooked with her before but had seen her in action a few times and tasted her delectable foodstuffs. I had a great day catching up with a few friends who were on the camp, having laughs and cooking with my friend in the kitchen and driving by myself with loud music and no kids for about 3 hours. It was an ace day but I think I am still recovering, even though that was three days ago!
Apart from that I don't know that I've been up to much. Dave's sister had her baby last Friday - a boy they called Patrick Andrew. They are all okay. Her elder son is at our place tonight and is trying to get an essay done. He is in year 8 and it is a bit of a team effort. It is about two movies so we watched one of them this afternoon. Maesie enjoyed it even though it was about American football. That girl loves movies - Dave is so proud. We are looking forward to family movie times in the future once she moves past Barbie 'Island Princess'.
Tomorrow I'm heading in to work to get organised for the following week when I'm starting back for a couple of days a week. I am looking forward to it but am also a bit unsure about whether I'll remember all the bits and pieces I need to and whether I'll be able to last all day.
It is highly likely that I am pushing myself too much and trying to do too much but I'm not keen on taking it easy. The latest example of me over-doing things occurred on Saturday. I drove to Burra early in the morning to help a friend cook for a camp. I hadn't cooked with her before but had seen her in action a few times and tasted her delectable foodstuffs. I had a great day catching up with a few friends who were on the camp, having laughs and cooking with my friend in the kitchen and driving by myself with loud music and no kids for about 3 hours. It was an ace day but I think I am still recovering, even though that was three days ago!
Apart from that I don't know that I've been up to much. Dave's sister had her baby last Friday - a boy they called Patrick Andrew. They are all okay. Her elder son is at our place tonight and is trying to get an essay done. He is in year 8 and it is a bit of a team effort. It is about two movies so we watched one of them this afternoon. Maesie enjoyed it even though it was about American football. That girl loves movies - Dave is so proud. We are looking forward to family movie times in the future once she moves past Barbie 'Island Princess'.
Tomorrow I'm heading in to work to get organised for the following week when I'm starting back for a couple of days a week. I am looking forward to it but am also a bit unsure about whether I'll remember all the bits and pieces I need to and whether I'll be able to last all day.
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