Thursday started off fairly well. Dave made some tasty breakfast which we enjoyed together and once we'd finished I started writing a list of things to do during the day. By about 11am it became apparent that I wouldn't actually get anything done from my list because I couldn't do anything and went back to bed. I spent the majority of the day either reading or dozing on my bed.
Dave went to pick up the girls during the afternoon and they all came back grumpy because Maesie didn't want to sing "The Wheels on the Bus" and so cried for around half the way home. Hi, happy family, so glad to see you back.
Once the girls were in bed and I'd had a bit of dinner, I felt better and made a banana cake and some banana muffins, then off to bed.
On Friday I was feeling okay. Maesie went to pre-school and once she came home we looked after a friend's daughter for a couple of hours. After that we all went up to my parent's place where Dave and I left the girls and went to a 50th birthday party. The party was good and I was feeling okay. It was great to catch up with friends and meet some new people, just a pity the initial topic of conversations tended to be about my lymphoma treatment. It's not that I don't want to talk about it and I do understand that people are interested because they care, it's just that I'd rather not have first hand knowledge of that topic.
Saturday was another busy day - body balance and then a wedding followed by the reception. When we got the invitation earlier in the year I wasn't sure whether I'd be able to make it so I was quite glad to get there on the weekend. It was a lovely ceremony and reception and another great time of catching up with people.
Seeing as Friday and Saturday were busy, I wasn't sure how I'd go on Sunday, especially as we had an earlier start than usual due to Trinity College open day. We all made it to church and home again. We had a quiet afternoon at home and I went to bed at 9.
After a nice long sleep - poor quality and interrupted however - I was still feeling good on Monday morning. I packed everyone off to their day's activities and then sat down to write a list of things to do, quite similar to the one I wrote on Thursday but had no luck getting through. Yesterday though I had much more luck and actually achieved lots of little things. I had an inkling of what I used to be able to do and a tease of what may one day be possible again.
That brings me to today. I was feeling okay mostly, but a little bit weak and tired. We dropped the girls at grandma's on the way into the RAH and found our way back to the lung function laboratory where I puffed my lungs out. That was over in about 20 minutes so we headed up to the mall for a while. Dave met a friend for lunch and while they ate yiros, I sucked down my barium solution. Delicious. They gave me a straw this time which made it just so much easier to drink.
After lunch we waved good bye and walked back to the hospital for my CT scan. We didn't have to wait long and it all went smoothly, now I just have to wait and see what the pictures say. I have to have a blood test on Thursday and when I call about the results of that, I will see what they can tell me about today. Otherwise I will have to wait till Tuesday when I go to see Dr Giri and start Round 7.
Tuesday, March 30, 2010
Wednesday, March 24, 2010
Half a pint down
Dave and I just realised why he may have been extra tired on our tension filled Tuesday, slightly grumpy and not up for much. He gave blood on Monday. It's no excuse for being completely useless, but it does explain a bit....
Tension Tuesday
Yesterday was an interesting day in the MacGillivray household. We didn't really do much and nothing in itself was eventful but it was tricky. We have had a few of these days. We were all home, but didn't really have a plan. Dave and I hadn't really talked about the day and so we were all a bit aimless.
I was tired, Dave was tired, the girls were just being themselves - needing things, wanting attention and requiring a little direction. Dave and I aren't always on the ball at the moment and things that were once easy are now a little more difficult and yesterday was full of it. I'm not always clear with what I say and what I mean because my head is messed up and I usually don't speak clearly enough for Dave to hear because I have always mumbled (just ask Dad) and now it's worse.
I also don't like having to ask Dave (or anyone for that matter) to do something more than once. I feel like a nag. But I also get annoyed because I want whatever I asked to be done because I think it is important. I know this is a psychological issue of mine and I am often aware of it when I request things, which makes it all the worse. So often I just end up doing things myself because I can't be bothered with the possible hassle. Then that means Dave doesn't do stuff, but I haven't even asked but then I still feel annoyed because I'm struggling through while it appears to me that he is frittering away time doing nothing. But he might be doing something useful, it's just not my priority and I don't want to ask because I don't want to nag because I don't want to talk it out because even that is tiring and I don't want to make him cross because that's a different issue of mine and I don't want to wade through that junk when there's the more pressing problem of getting rid of cancer. But Dave doesn't know quite what's going on either because he's not sure whether to let me do stuff to have a sense of achievement and if I'm doing it because I feel okay or whether he's supposed to make me rest and do the jobs.
So anyway, that was a tension filled Tuesday. Possibly I have divulged too much information about the Dave and Beth partnership, but nevermind, we are both fully flawed post-fall humans after all.
Today has been a bit better. Dave stayed up and killed villains or aliens or monsters or something on the computer last night so he felt he'd had a bit of time out. He then went to work and I was home with the girls. I felt okay. Not up for lots, but okay to look after the girls. They watched Shrek then Elsie had a good nap and while she slept Maesie and I read/played Cinderella, Snow White and Rapunzel. That's the latest thing for Maesie - acting out the stories with Barbies, the Prince and all sorts of other props. There is no way she gets that from me and after doing three stories today, I was pretty over it. She wanted to keep going but then Elsie woke up and Dave's mum came to collect the girls. Just in time, because I was staring down the barrel of another story.
Dave came home just as mum and the girls were leaving. Once they'd gone we tidied up inside and picked up all the props from our earlier story telling. We did end up talking about yesterday and about how tricky and weird things have been and partly sorted things out.
We did have a little church meeting earlier this evening but after that we have had some nice time at home without the girls, folding washing together in front of the tv. I know they go to bed at night and they usually aren't too much of a hassle but it does make a difference when they aren't even here.
Aside from all this, I have another little side effect to add to my list - I get little cramps in my hands and feet. I'm pretty sure this is due to the vincristine, the same drug that causes the numbness. It's not that fun.
I was tired, Dave was tired, the girls were just being themselves - needing things, wanting attention and requiring a little direction. Dave and I aren't always on the ball at the moment and things that were once easy are now a little more difficult and yesterday was full of it. I'm not always clear with what I say and what I mean because my head is messed up and I usually don't speak clearly enough for Dave to hear because I have always mumbled (just ask Dad) and now it's worse.
I also don't like having to ask Dave (or anyone for that matter) to do something more than once. I feel like a nag. But I also get annoyed because I want whatever I asked to be done because I think it is important. I know this is a psychological issue of mine and I am often aware of it when I request things, which makes it all the worse. So often I just end up doing things myself because I can't be bothered with the possible hassle. Then that means Dave doesn't do stuff, but I haven't even asked but then I still feel annoyed because I'm struggling through while it appears to me that he is frittering away time doing nothing. But he might be doing something useful, it's just not my priority and I don't want to ask because I don't want to nag because I don't want to talk it out because even that is tiring and I don't want to make him cross because that's a different issue of mine and I don't want to wade through that junk when there's the more pressing problem of getting rid of cancer. But Dave doesn't know quite what's going on either because he's not sure whether to let me do stuff to have a sense of achievement and if I'm doing it because I feel okay or whether he's supposed to make me rest and do the jobs.
So anyway, that was a tension filled Tuesday. Possibly I have divulged too much information about the Dave and Beth partnership, but nevermind, we are both fully flawed post-fall humans after all.
Today has been a bit better. Dave stayed up and killed villains or aliens or monsters or something on the computer last night so he felt he'd had a bit of time out. He then went to work and I was home with the girls. I felt okay. Not up for lots, but okay to look after the girls. They watched Shrek then Elsie had a good nap and while she slept Maesie and I read/played Cinderella, Snow White and Rapunzel. That's the latest thing for Maesie - acting out the stories with Barbies, the Prince and all sorts of other props. There is no way she gets that from me and after doing three stories today, I was pretty over it. She wanted to keep going but then Elsie woke up and Dave's mum came to collect the girls. Just in time, because I was staring down the barrel of another story.
Dave came home just as mum and the girls were leaving. Once they'd gone we tidied up inside and picked up all the props from our earlier story telling. We did end up talking about yesterday and about how tricky and weird things have been and partly sorted things out.
We did have a little church meeting earlier this evening but after that we have had some nice time at home without the girls, folding washing together in front of the tv. I know they go to bed at night and they usually aren't too much of a hassle but it does make a difference when they aren't even here.
Aside from all this, I have another little side effect to add to my list - I get little cramps in my hands and feet. I'm pretty sure this is due to the vincristine, the same drug that causes the numbness. It's not that fun.
Monday, March 22, 2010
My pretty toes
This morning, after quite a good sleep, Dave took the girls to pre-school and family day care while I went up to the hospital for a blood test. Dave and I then met back at home and headed into the city. We were a bit late, but not too bad. Cannulation went well, which made it four out of four for this round. No multiple attempts and no bruising - woohoo.
I made it out of the RAH in good time to head up to Rundle St for my massage and pedicure. It was lovely, though I'm not sure I could work there with that relaxation music playing all day. The lady (maybe she was called a 'therapist'?) had quite small hands and particularly little thumbs and I thought surely those little hands are sore at the end of the day. Anyway, she did a good job regardless of the size of her hands.
Here are my newly renovated toe nails.
After that we left the city and trundled back to Gawler to pick up the girls. Dave made pasta for tea, we did the usual bedtime stuff and now we are having a giggle watching the Melbourne Comedy Gala.
I've got another CT scan coming up next Tuesday, as well as a lung function test. It will be interesting to see what's happened over the last two rounds and how much is left. I saw on the tv the other day that each CT is the equivalent of around 800 xrays and that they could increase the chance of getting cancer. Grand, just what I need.
It feels a bit strange to be approaching the end of the initial 8 rounds. For a while I didn't really think about the end because it seemed so far away and I didn't want to get ahead of myself. I've sort of been drifting along doing whatever needs to be done - blood test, go to hospital, get chemo, rest, take tablets, turn up to appointments. Whatever. But soon things will change - either it will all be gone and I will be sent on my way to hopefully return to my life, with regular checkups. It would be nice to have some semblance of structure back. Or perhaps it will not all be gone and then I continue this strange life at the mercy of medicine. Either way I will continue to trust in the Lord because I can't work out what's going on and I believe He has many and varied reasons for whatever will eventuate. He has faithfully been with me thus far and has promised not to quit any time soon.
I made it out of the RAH in good time to head up to Rundle St for my massage and pedicure. It was lovely, though I'm not sure I could work there with that relaxation music playing all day. The lady (maybe she was called a 'therapist'?) had quite small hands and particularly little thumbs and I thought surely those little hands are sore at the end of the day. Anyway, she did a good job regardless of the size of her hands.
Here are my newly renovated toe nails.
After that we left the city and trundled back to Gawler to pick up the girls. Dave made pasta for tea, we did the usual bedtime stuff and now we are having a giggle watching the Melbourne Comedy Gala.
I've got another CT scan coming up next Tuesday, as well as a lung function test. It will be interesting to see what's happened over the last two rounds and how much is left. I saw on the tv the other day that each CT is the equivalent of around 800 xrays and that they could increase the chance of getting cancer. Grand, just what I need.
It feels a bit strange to be approaching the end of the initial 8 rounds. For a while I didn't really think about the end because it seemed so far away and I didn't want to get ahead of myself. I've sort of been drifting along doing whatever needs to be done - blood test, go to hospital, get chemo, rest, take tablets, turn up to appointments. Whatever. But soon things will change - either it will all be gone and I will be sent on my way to hopefully return to my life, with regular checkups. It would be nice to have some semblance of structure back. Or perhaps it will not all be gone and then I continue this strange life at the mercy of medicine. Either way I will continue to trust in the Lord because I can't work out what's going on and I believe He has many and varied reasons for whatever will eventuate. He has faithfully been with me thus far and has promised not to quit any time soon.
Sunday, March 21, 2010
A party weekend
Well, today was Maesie's 4th birthday. We all got through it and it was a good day. We had a little gathering in the park which was slightly crazy as it was packed. Apologies to all those who were wandering aimlessly around the park trying to find us.
I am pretty tired now but I'm not sure whether that will automatically mean that tomorrow is a low day. It doesn't always seem to follow.
Maesie's Snow White cake was quite a success, if I do say so myself.
Prior to this birthday fiasco, two days have gone unreported.
Friday Maesie went to pre-school pre-entry, Elsie went to child care and we went to the shops to get terrible amounts of disgusting party food and a few things from Big W. We did a few bits and pieces at home, with neither Dave nor me being particularly productive. We ended up skipping swimming again because Maesie really wasn't keen and Elsie screamed all the way in the car while Dave was taking her and so he turned around and brought her home. I made honey crackles with two small helpers, which was a fair challenge but wasn't too bad.
Dave headed out to a school function for a little while and I made chocolate crackles and a birthday cake.
It was a fairly good day but I felt tired and my eyes felt heavy and it was just hard work to keep pushing on. I wasn't totally useless, but things took extra effort.
Saturday morning was the usual thing - Starplex for everyone - and this week I did Body Balance. It was really good to be moving, but not doing anything too crazy. Lunch, nap for Elsie, Dave took Maesie to a party, I tidied and got ready for her birthday today. In the afternoon we took the girls to the O'Loughlin's and then went to another birthday party for a friend of ours. It was a splendid evening of good food and company but it was still a bit of hard work for me. Heavy eyes and still fairly tired. I'd say that'll be normal for a while.
We picked up the girls, had a crappy sleep and that gets us to today.
Tomorrow I am back to the RAH for day 8. After my treatment I am going to get treatment of a different type - I'm heading up to Rundle Street to cash in a voucher I got for my birthday last year. I think I signed up for a massage and pedicure. We'll see how that goes. I think it'll be my second experience of both.
I also should mention that my eyebrows are on the way out and my face is getting a bit puffy. I have a fairly good cancer-patient look.
I am pretty tired now but I'm not sure whether that will automatically mean that tomorrow is a low day. It doesn't always seem to follow.
Maesie's Snow White cake was quite a success, if I do say so myself.
Prior to this birthday fiasco, two days have gone unreported.
Friday Maesie went to pre-school pre-entry, Elsie went to child care and we went to the shops to get terrible amounts of disgusting party food and a few things from Big W. We did a few bits and pieces at home, with neither Dave nor me being particularly productive. We ended up skipping swimming again because Maesie really wasn't keen and Elsie screamed all the way in the car while Dave was taking her and so he turned around and brought her home. I made honey crackles with two small helpers, which was a fair challenge but wasn't too bad.
Dave headed out to a school function for a little while and I made chocolate crackles and a birthday cake.
It was a fairly good day but I felt tired and my eyes felt heavy and it was just hard work to keep pushing on. I wasn't totally useless, but things took extra effort.
Saturday morning was the usual thing - Starplex for everyone - and this week I did Body Balance. It was really good to be moving, but not doing anything too crazy. Lunch, nap for Elsie, Dave took Maesie to a party, I tidied and got ready for her birthday today. In the afternoon we took the girls to the O'Loughlin's and then went to another birthday party for a friend of ours. It was a splendid evening of good food and company but it was still a bit of hard work for me. Heavy eyes and still fairly tired. I'd say that'll be normal for a while.
We picked up the girls, had a crappy sleep and that gets us to today.
Tomorrow I am back to the RAH for day 8. After my treatment I am going to get treatment of a different type - I'm heading up to Rundle Street to cash in a voucher I got for my birthday last year. I think I signed up for a massage and pedicure. We'll see how that goes. I think it'll be my second experience of both.
I also should mention that my eyebrows are on the way out and my face is getting a bit puffy. I have a fairly good cancer-patient look.
Thursday, March 18, 2010
What tomorrow brought
Tomorrow brought only enough energy to last until midday.
I was okay in the morning and put some washing on, unpacked the dishwasher, wrote a list or two to prepare for Maesie's birthday. Tidied the kitchen table a little bit. Not a great deal. After that though I just fizzled out.
I didn't make it to the shops as I had planned, I only made it to bed. I think today is up there as one with the longest time on my bed either reading or sleeping. Apart from when I've been in hospital and spent the entire day that way.
That accumulating fatigue is really starting to catch up with me. It's a bit of a bummer.
So that's it for today. A pyjama day for Beth. I haven't even had a shower yet.
I was okay in the morning and put some washing on, unpacked the dishwasher, wrote a list or two to prepare for Maesie's birthday. Tidied the kitchen table a little bit. Not a great deal. After that though I just fizzled out.
I didn't make it to the shops as I had planned, I only made it to bed. I think today is up there as one with the longest time on my bed either reading or sleeping. Apart from when I've been in hospital and spent the entire day that way.
That accumulating fatigue is really starting to catch up with me. It's a bit of a bummer.
So that's it for today. A pyjama day for Beth. I haven't even had a shower yet.
Wednesday, March 17, 2010
More time at the MacGillivray village
Yesterday morning we dropped the girls with grandma and grandpa Mac who were planning to take them to the beach. Dave and I then headed to the RAH where I got my etoposide without trouble. Once we left the hospital we caught up with some friends for lunch, which was lovely.
From there we headed to the plaza to get some presents for Maesie's birthday. We went on a search for a nice compendium of fairy tales with good illustrations. Do you think such thing exists? No it does not. So that was a bit frustrating. After the shops it was back to the 'MacGillivray village' where we had tea and put the girls to bed. Dave had a spa and stayed up too late but had a good time. I also stayed up too late on the computer. Foolish.
Maesie woke up and was upset and wanted to go home. Ended up in our bed which resulted in the opposite of a good night sleep for me. Anyway, I'm getting used to it.
This morning Dave's dad gave me a ride to the hospital. I had another bag of etoposide without a hassle and then headed up to Rundle Street where I first went to Endota Spa to book in an appointment for next week to use a voucher I have, then to Kathmandu to look at trousers, had a bit of lunch, then to Borders to look for the elusive fairy tale book (I found something that will do the job). I caught the bus to the plaza then headed over to the Tea Tree Gully Library because I am a bit bored of the Gawler Library books and there are more at Tea Tree Gully. I tried to find cancer or lymphoma books and although there are books about cancer treatment, cancer diets, a few about surviving cancer and a couple about cancer experiences, there's not heaps to choose from. If I were to write a book about this whole she-bang I'm fairly sure there wouldn't be many else around. But how many people get lymphoma? Not heaps. Even fewer get Hodgkin's. Maybe a handful of people would read it. But does that matter or is it the writing that is the important part? I'm not sure.
Dave's sister picked me up from the library and I rejoined the village at psycho hour when my two plus their three cousins were going bonkers. We fed them, then ate dinner ourselves and left, once we'd packed a ridiculous amount of stuff for one night into the back of the car.
I'm tired, but I think it's mostly because 1. I went to bed too late, 2. I had a bad sleep and 3. I did a bit too much in the city today. I don't think it has much to do with having cancer and/or chemo. We shall see what tomorrow brings.
From there we headed to the plaza to get some presents for Maesie's birthday. We went on a search for a nice compendium of fairy tales with good illustrations. Do you think such thing exists? No it does not. So that was a bit frustrating. After the shops it was back to the 'MacGillivray village' where we had tea and put the girls to bed. Dave had a spa and stayed up too late but had a good time. I also stayed up too late on the computer. Foolish.
Maesie woke up and was upset and wanted to go home. Ended up in our bed which resulted in the opposite of a good night sleep for me. Anyway, I'm getting used to it.
This morning Dave's dad gave me a ride to the hospital. I had another bag of etoposide without a hassle and then headed up to Rundle Street where I first went to Endota Spa to book in an appointment for next week to use a voucher I have, then to Kathmandu to look at trousers, had a bit of lunch, then to Borders to look for the elusive fairy tale book (I found something that will do the job). I caught the bus to the plaza then headed over to the Tea Tree Gully Library because I am a bit bored of the Gawler Library books and there are more at Tea Tree Gully. I tried to find cancer or lymphoma books and although there are books about cancer treatment, cancer diets, a few about surviving cancer and a couple about cancer experiences, there's not heaps to choose from. If I were to write a book about this whole she-bang I'm fairly sure there wouldn't be many else around. But how many people get lymphoma? Not heaps. Even fewer get Hodgkin's. Maybe a handful of people would read it. But does that matter or is it the writing that is the important part? I'm not sure.
Dave's sister picked me up from the library and I rejoined the village at psycho hour when my two plus their three cousins were going bonkers. We fed them, then ate dinner ourselves and left, once we'd packed a ridiculous amount of stuff for one night into the back of the car.
I'm tired, but I think it's mostly because 1. I went to bed too late, 2. I had a bad sleep and 3. I did a bit too much in the city today. I don't think it has much to do with having cancer and/or chemo. We shall see what tomorrow brings.
Monday, March 15, 2010
Screen doors, prizes and too much tv
Saturday and Sunday were good days and I should have written this then because this evening I feel a bit shody and don't care much for typing.
On Saturday we all headed to Starplex. Dave taught his combat class, the girls went to creche (God bless Starplex creche and the lovely ladies that work there) and I did RPM. This week I actually did most of the class and tried reasonably hard - it was good. The best part was that I was still going strong for the rest of the day. Not that we did a great deal. We just pottered around at home and admired Dave's handy work - a new screen door on the front and the old front screen on the laundry door.
Sunday was another good day - church and then a baby shower. The baby shower was slightly awkward however, as I won the three games. I had a flukey guess at the number of jelly beans in a baby's bottle, remembered 13/14 baby items on a tray and only just beat another lady at drinking 100mL of water from a baby bottle. It was splendid to celebrate the imminent birth of a child, eat a delicious afternoon tea and not be with my children. I do love them, I just like time away too.
Last night I shaved Dave's head with the clippers and then he finished it off with his electric razor. We shaved it to raise money for the Leukemia Foundation's 'Shave for a Cure' and have ended up with over $2000. Thanks very much for donating if you did.
That was the weekend.
Today was the start of Round 6. Getting my drugs was uneventful. On the way to meeting my mum I saw in the mall that the stationery store kikki-k has come to the beautiful rAdelaide and made it even more rad. It was very exciting. I got home around 3, Dave and the girls at around 3:40. Maesie helped Dave make pasta for tea and she enjoyed winding the handle to cut it into noodles.
Tea then bed for girls. Couch for me because I have run out of steam and feel chemo-y. So I have blobbed in front of the tv for the evening. It's not really that good because it's a bit of a waste of time. I should do something else whilst I sit and rest. That is probably one way I waste my life at the moment. Watching too much mind rotting tv.
PS - Just in case you have been wondering, the results of my butt swab were negative so it's nice not to have to worry about any more nasty bugs for the time being.
On Saturday we all headed to Starplex. Dave taught his combat class, the girls went to creche (God bless Starplex creche and the lovely ladies that work there) and I did RPM. This week I actually did most of the class and tried reasonably hard - it was good. The best part was that I was still going strong for the rest of the day. Not that we did a great deal. We just pottered around at home and admired Dave's handy work - a new screen door on the front and the old front screen on the laundry door.
Sunday was another good day - church and then a baby shower. The baby shower was slightly awkward however, as I won the three games. I had a flukey guess at the number of jelly beans in a baby's bottle, remembered 13/14 baby items on a tray and only just beat another lady at drinking 100mL of water from a baby bottle. It was splendid to celebrate the imminent birth of a child, eat a delicious afternoon tea and not be with my children. I do love them, I just like time away too.
Last night I shaved Dave's head with the clippers and then he finished it off with his electric razor. We shaved it to raise money for the Leukemia Foundation's 'Shave for a Cure' and have ended up with over $2000. Thanks very much for donating if you did.
That was the weekend.
Today was the start of Round 6. Getting my drugs was uneventful. On the way to meeting my mum I saw in the mall that the stationery store kikki-k has come to the beautiful rAdelaide and made it even more rad. It was very exciting. I got home around 3, Dave and the girls at around 3:40. Maesie helped Dave make pasta for tea and she enjoyed winding the handle to cut it into noodles.
Tea then bed for girls. Couch for me because I have run out of steam and feel chemo-y. So I have blobbed in front of the tv for the evening. It's not really that good because it's a bit of a waste of time. I should do something else whilst I sit and rest. That is probably one way I waste my life at the moment. Watching too much mind rotting tv.
PS - Just in case you have been wondering, the results of my butt swab were negative so it's nice not to have to worry about any more nasty bugs for the time being.
Friday, March 12, 2010
A foolish excursion
Yesterday and today have been quite good on the energy side of things and I'm expecting that to continue over the weekend and into next week as I start treatment again. It'll be the week after where things get wonky again.
With my energy up yesterday I decided that I would go out to the shops with the girls. I wanted to go to Target and then Foodland, both for only a couple of things. Well, I may have had some energy but I had lost my brain. I left the house at about 11am. I left before giving the girls any lunch and I left before Elsie had a rest. Target wasn't too bad but it was difficult moving my young friends on from the toy section. Back in the car and Elsie didn't want to be strapped in, which is unfortunate for a 20 month old in a car. She cracked it. At Foodland Maesie was not happy with the Drake brand 'blue' bread I had selected and she wanted 'pink' bread. She cracked it. We ended up with Wonder-bloody White and promptly left. I am glad to say that I did not crack it. We all made it home and the afternoon was not too bad. Needless to say, I will never repeat my error.
This morning I actually had enough energy to get annoyed and a bit huffy. I was getting Maesie ready for pre-school and Elsie ready for childcare. I was going ok until I couldn't find Elsie's shoes. She only has one pair of shoes so I really needed them before I took her to childcare. We couldn't find them. In the end I left Elsie with Dave and took Maesie to pre-school - she was late. Back at home Dave had found some crusty sandals that would do for the day so I took Elsie to childcare. Back home again and I got to have a shower and then I headed out for a blood test. I went to the IMVS at the doctor's but when I got there they said my blood wouldn't get up to the hospital in time for analysis before my appointment so I left there and went up to the IMVS at the hospital for my test. Just little things that made my morning frustrating.
This afternoon I saw the doctor to make sure everything is okay to start another round on Monday. I didn't really have any questions today and it was pretty straight forward. Nothing to tell. Oh, except that my haemoglobin was 110 (instead of 73 last week) so thanks to whoever it was whose blood I got last Friday. My neutrophils were 4 point something too, which is in the normal range. So all good with the blood.
With my energy up yesterday I decided that I would go out to the shops with the girls. I wanted to go to Target and then Foodland, both for only a couple of things. Well, I may have had some energy but I had lost my brain. I left the house at about 11am. I left before giving the girls any lunch and I left before Elsie had a rest. Target wasn't too bad but it was difficult moving my young friends on from the toy section. Back in the car and Elsie didn't want to be strapped in, which is unfortunate for a 20 month old in a car. She cracked it. At Foodland Maesie was not happy with the Drake brand 'blue' bread I had selected and she wanted 'pink' bread. She cracked it. We ended up with Wonder-bloody White and promptly left. I am glad to say that I did not crack it. We all made it home and the afternoon was not too bad. Needless to say, I will never repeat my error.
This morning I actually had enough energy to get annoyed and a bit huffy. I was getting Maesie ready for pre-school and Elsie ready for childcare. I was going ok until I couldn't find Elsie's shoes. She only has one pair of shoes so I really needed them before I took her to childcare. We couldn't find them. In the end I left Elsie with Dave and took Maesie to pre-school - she was late. Back at home Dave had found some crusty sandals that would do for the day so I took Elsie to childcare. Back home again and I got to have a shower and then I headed out for a blood test. I went to the IMVS at the doctor's but when I got there they said my blood wouldn't get up to the hospital in time for analysis before my appointment so I left there and went up to the IMVS at the hospital for my test. Just little things that made my morning frustrating.
This afternoon I saw the doctor to make sure everything is okay to start another round on Monday. I didn't really have any questions today and it was pretty straight forward. Nothing to tell. Oh, except that my haemoglobin was 110 (instead of 73 last week) so thanks to whoever it was whose blood I got last Friday. My neutrophils were 4 point something too, which is in the normal range. So all good with the blood.
No more icecream
Food is important to me. I like to cook and I like to eat. At the start of all this, back in October I guess, I was not enjoying food so much. I didn't always know what I felt like eating and sometimes just had a slice of toast for tea. Then I read about all sorts of eating/food related stuff before I started chemo - mouth ulcers, nausea, vomiting, change in taste amongst others. I was primed for it to be a bit of an issue.
For the first round it was a bit tricky. I did feel sick, I did spew, I did get a sore mouth. I think I weighed about 61.5 kgs. I didn't eat heaps, but I tried to get something down and I tried to make it good. Since then though, I have had different anti-sickness meds (Emend) and I've had very little trouble eating. This has been both good and bad. I am very glad that I haven't been sick and that I can eat pretty much anything. The problem is that I HAVE been eating pretty much anything. I eat a fair bit and I eat a fair bit of junk. At the beginning I read all sorts of stuff about wholesome food, organic fruit and veges etc etc and had grand plans of providing my body with good fuel. Ha! Chips and icecream more like it.
I have been eating too many desserts, too many biscuits, too little fruit. I read in one 'Eating with Cancer' booklet ways to up the calories of foods that cancer patients are actually able to eat. No need here - the calories are up high enough. Today I had to hop on the scales again prior to my doctor's appointment and they read 66.3 kg. I'm not sure that people are supposed to gain weight whilst they have cancer and they are being fed toxic drugs for it. Turns out it can be done.
My lack of exercise hasn't been helping. It's time to cut back on the crap and start getting some muscle to replace the fat that has been creeping on. Although I could blame it all on the steroids that are part of my treatment. Perhaps it's not the icecream after all....
For the first round it was a bit tricky. I did feel sick, I did spew, I did get a sore mouth. I think I weighed about 61.5 kgs. I didn't eat heaps, but I tried to get something down and I tried to make it good. Since then though, I have had different anti-sickness meds (Emend) and I've had very little trouble eating. This has been both good and bad. I am very glad that I haven't been sick and that I can eat pretty much anything. The problem is that I HAVE been eating pretty much anything. I eat a fair bit and I eat a fair bit of junk. At the beginning I read all sorts of stuff about wholesome food, organic fruit and veges etc etc and had grand plans of providing my body with good fuel. Ha! Chips and icecream more like it.
I have been eating too many desserts, too many biscuits, too little fruit. I read in one 'Eating with Cancer' booklet ways to up the calories of foods that cancer patients are actually able to eat. No need here - the calories are up high enough. Today I had to hop on the scales again prior to my doctor's appointment and they read 66.3 kg. I'm not sure that people are supposed to gain weight whilst they have cancer and they are being fed toxic drugs for it. Turns out it can be done.
My lack of exercise hasn't been helping. It's time to cut back on the crap and start getting some muscle to replace the fat that has been creeping on. Although I could blame it all on the steroids that are part of my treatment. Perhaps it's not the icecream after all....
Wednesday, March 10, 2010
Where did Tuesday go?
On the back of Monday's normalness, yesterday was terribly disappointing. I was very pathetic. I actually can't remember much because I was so vague and tired that it went past in a blur. I sat in the lounge chair a lot, trying to keep my eyes open and play "Tinkerbell and the Prince" with Maesie but it just wasn't happening. I did manage to feed the children and I did get them dressed but that was about it. Dave was out till lunchtime and it was hard going, but we all survived.
Once Dave got home I had a rest and then we packed some gear and headed off to his parent's place. We had a tasty roast for tea and then Dave and I headed off to Ross Noble. We were both so tired it was kind of silly to be going out in a way, but it was nice to be together for a little while and to have a good chuckle. I was glad that I was well enough to go and I enjoyed being out, pretending everything is just fine and dandy.
Today I am okay - not as good as Monday, but not as bad as yesterday. I feel tired and a bit weak and shaky, but not as totally pathetic as yesterday.
I realise that many of these blog entries are quite boring because they really only record what I/we did, whether I had a blood test, how my energy levels were, whether Maesie ate her vegetables etc etc. I do have quite a few things buzzing in my head to write but it ends up being late at night or I just feel too vague to get them down properly. In one sense, I guess I don't care that all this lacks interest and insight because part of the reason for putting it here is just as a record of 'the lymphoma days'.
Once Dave got home I had a rest and then we packed some gear and headed off to his parent's place. We had a tasty roast for tea and then Dave and I headed off to Ross Noble. We were both so tired it was kind of silly to be going out in a way, but it was nice to be together for a little while and to have a good chuckle. I was glad that I was well enough to go and I enjoyed being out, pretending everything is just fine and dandy.
Today I am okay - not as good as Monday, but not as bad as yesterday. I feel tired and a bit weak and shaky, but not as totally pathetic as yesterday.
I realise that many of these blog entries are quite boring because they really only record what I/we did, whether I had a blood test, how my energy levels were, whether Maesie ate her vegetables etc etc. I do have quite a few things buzzing in my head to write but it ends up being late at night or I just feel too vague to get them down properly. In one sense, I guess I don't care that all this lacks interest and insight because part of the reason for putting it here is just as a record of 'the lymphoma days'.
Monday, March 8, 2010
Achy skin and numb toes
Today I have felt more normal than I have for a long time. I have had pretty good energy all day and have been able to keep up with things around the house. I didn't need a rest and even did some cooking. I made 'sausage rolls' with lentils and vegetables and Maesie gobbled them up for lunch. Hoorah!
I do have achy skin though, which I've had before and it is a bit weird. My toes have also started to lose their feeling, in the same way as my fingers. It's a bit of an annoying feeling, but it's not too unbearable. I think it's supposed to be a temporary thing and after I've finished chemo and the drugs gradually leave my system for good then my extremities should go back to their normal feeling.
Although I am glad to have had a good day and I hope that it continues, I am also aware that I have three rounds left to kick this so I hope the drugs are still eating away at the cancerous cells. I think the dose reduction this round has meant I haven't been quite as ruined and since the doses stay the same now, I hope I'll be able to have a few more 'normal' days.
Tomorrow night Dave and I will hopefully make it to Ross Noble. I am looking forward to having a good laugh. I hope it is as humorous as I expect it to be.
I do have achy skin though, which I've had before and it is a bit weird. My toes have also started to lose their feeling, in the same way as my fingers. It's a bit of an annoying feeling, but it's not too unbearable. I think it's supposed to be a temporary thing and after I've finished chemo and the drugs gradually leave my system for good then my extremities should go back to their normal feeling.
Although I am glad to have had a good day and I hope that it continues, I am also aware that I have three rounds left to kick this so I hope the drugs are still eating away at the cancerous cells. I think the dose reduction this round has meant I haven't been quite as ruined and since the doses stay the same now, I hope I'll be able to have a few more 'normal' days.
Tomorrow night Dave and I will hopefully make it to Ross Noble. I am looking forward to having a good laugh. I hope it is as humorous as I expect it to be.
Sunday, March 7, 2010
Graduation
Friday I spent at the Gawler Hospital getting some blood. It ended up taking all day and I was eager to get out. Dave had taken the girls to swimming so I was planning to drive home. The nurse asked me "Is there anyone to pick you up?" To which I answered yes, in good conscience because there was someone, they just weren't coming. Then she asked me more specific questions to which I had to lie and it was getting harder to escape. Then I said I needed to wait outside because Dave would have the girls, with the plan that I'd just go, but the nurse said I'll be able to see the car from the window and they'd make sure I got out to the car ok. I'd had blood, blah, blah, they had to make sure I was alright, blah, blah, I could faint, blah, blah. So I called some friends and they came to my rescue and took me home. The car had an overnight stay at the hospital.
Friday evening I did feel better for having had the blood, but I didn't feel amazing. It was a little bit disappointing. Hopefully there'll be some longer term benefits.
On Saturday morning Dave had combat and he took the girls to Starplex with him. I stayed home and did a few bits and pieces but mainly took it easy in preparation for graduation in the evening. We had lunch and bumbled through the afternoon until about 4:30 when we took the girls to a friend's place where they were going to have a sleep over while we went to graduation. We met my mum and dad for tea and then made it to Rostrevor in good time for the ceremony. Everything went well and I collected my certificate in a smashing gown and fancy stoll. It was great to catch up with lots of friends from Bible College too. Praise the Lord I was well enough to go and for my time studying at the college.
Today it was lovely to wake up without children and to prepare only my breakfast and eat it uninterrupted. We went to church and were reunited with our offspring, who although happy to see us, didn't seem too fussed about the overnight absence.
The rest of the day was just spent at home and I was quite tired and useless. Dave made coloured merigues with Maesie and I did not much. I had a little kip, but it didn't make heaps of difference. I feel a bit ripped off about the blood - I went out once after taking it easy and I'm still wiped out. I guess it wasn't super blood after all.
Week three, round 5, starts tomorrow so I have less tablets to take and hopefully no hospital visits until Friday when I have to see Dr Giri, prior to starting Round 6 next Monday.
Friday evening I did feel better for having had the blood, but I didn't feel amazing. It was a little bit disappointing. Hopefully there'll be some longer term benefits.
On Saturday morning Dave had combat and he took the girls to Starplex with him. I stayed home and did a few bits and pieces but mainly took it easy in preparation for graduation in the evening. We had lunch and bumbled through the afternoon until about 4:30 when we took the girls to a friend's place where they were going to have a sleep over while we went to graduation. We met my mum and dad for tea and then made it to Rostrevor in good time for the ceremony. Everything went well and I collected my certificate in a smashing gown and fancy stoll. It was great to catch up with lots of friends from Bible College too. Praise the Lord I was well enough to go and for my time studying at the college.
Today it was lovely to wake up without children and to prepare only my breakfast and eat it uninterrupted. We went to church and were reunited with our offspring, who although happy to see us, didn't seem too fussed about the overnight absence.
The rest of the day was just spent at home and I was quite tired and useless. Dave made coloured merigues with Maesie and I did not much. I had a little kip, but it didn't make heaps of difference. I feel a bit ripped off about the blood - I went out once after taking it easy and I'm still wiped out. I guess it wasn't super blood after all.
Week three, round 5, starts tomorrow so I have less tablets to take and hopefully no hospital visits until Friday when I have to see Dr Giri, prior to starting Round 6 next Monday.
Friday, March 5, 2010
Just a pint of blood, thanks. No ice.
I'm in Gawler Health Service waiting for my blood units to be ready for me. I'm on a bed in a ward like I'm a real patient, but I just feel normal so it's a bit strange. There is another bed in here but there's no one in it at the moment. When I arrived they were expecting me and it hasn't been a surprise to anyone about what's going on so I'm quite thankful for all the organising that has happened for me.
Last night we celebrated a nephew's 9th birthday at his house. It had the usual dose of MacGillivray crazy but was a good night. Once I got into bed however, for some reason my gut decided it was not at all happy with the birthday fare I had consumed. I was up and down to the lav about four times until the last trace of chocolate crackle had been evacuated. I think I eventually got to sleep around 2am. Just another bad night's sleep. The girl's didn't disturb me this time though. I haven't really been sleeping well generally - it's usually light and the last couple of nights I've had weird dreams that seem to go all night too. The night before last I had to roast a whole pig as part of my engineering course! Wacky.
My transfusion has started so there's a bag of dark red fluid hanging next to me, getting pumped through a tube into my arm. It looks a bit icky but it also looks like a rich fluid full of goodness. It's strange to think about all the different parts of the blood and that the technology exists to take it from one person and give it to another. All those new cells just waiting to work for me. There's a whole lot of other stuff for me tied up with close consideration of blood too - there's the concept of life in general because without blood coursing through your body, everything stops. Plus it reminds me of the many references to blood in the Bible. Splashing it around the doorways at the passover, the blood shed by all the sacrifices made by the Israelites and the blood of Jesus on the cross. The fluid of life and death.
Last night we celebrated a nephew's 9th birthday at his house. It had the usual dose of MacGillivray crazy but was a good night. Once I got into bed however, for some reason my gut decided it was not at all happy with the birthday fare I had consumed. I was up and down to the lav about four times until the last trace of chocolate crackle had been evacuated. I think I eventually got to sleep around 2am. Just another bad night's sleep. The girl's didn't disturb me this time though. I haven't really been sleeping well generally - it's usually light and the last couple of nights I've had weird dreams that seem to go all night too. The night before last I had to roast a whole pig as part of my engineering course! Wacky.
My transfusion has started so there's a bag of dark red fluid hanging next to me, getting pumped through a tube into my arm. It looks a bit icky but it also looks like a rich fluid full of goodness. It's strange to think about all the different parts of the blood and that the technology exists to take it from one person and give it to another. All those new cells just waiting to work for me. There's a whole lot of other stuff for me tied up with close consideration of blood too - there's the concept of life in general because without blood coursing through your body, everything stops. Plus it reminds me of the many references to blood in the Bible. Splashing it around the doorways at the passover, the blood shed by all the sacrifices made by the Israelites and the blood of Jesus on the cross. The fluid of life and death.
Thursday, March 4, 2010
Yet another new development...
My haemoglobin has reached all time lows and was 73 yesterday (it's supposed to be up around 100). This means I win a prize - two units of blood tomorrow. It's been sorted out this afternoon by the trials nurse and my GP in Gawler. I have to rock up at casualty at the Gawler Health Service at 8 am and settle in for a few hours to get some new blood. I had a blood test this afternoon for them to match me up with the right stuff. I haven't really thought too much about getting a blood transfusion before and I didn't think it really bothered me, but it kind of does in a way. It is a bit weird to think that someone else's blood will be slowly fed into me through a tube. Blood is a fairly personal thing and it's a bit icky. The general idea in first aid is to avoid getting other people's blood on you, but I'm about to sit down and let them put it in my arm. David did suggest that perhaps I could request blood from someone with super powers so that I get a real pick up but because it's been a bit of rush I thought it was a bit cheeky to ask. Maybe next time. This time I'll be happy just to have a bit of haemoglobin.
My festy shingles sore on my foot went hard and crusty and the other day it came off. It was quite interesting because the edges were joined to the skin but underneath it wasn't connected at all. It came off in a couple of big pieces and there is nice new skin on my foot now. I might try and get some pictures... I still have to take two tablets twice a day to keep the shingles at bay.
Other than that, I have finally folded all the clean washing so we all have clothes in our cupboards which is better than rummaging for underpants in the laundry every day. We've also had our gas stove connected after a few months without it due to the new kitchen. Dave is happy to be able to cook with it again.
My haemoglobin has reached all time lows and was 73 yesterday (it's supposed to be up around 100). This means I win a prize - two units of blood tomorrow. It's been sorted out this afternoon by the trials nurse and my GP in Gawler. I have to rock up at casualty at the Gawler Health Service at 8 am and settle in for a few hours to get some new blood. I had a blood test this afternoon for them to match me up with the right stuff. I haven't really thought too much about getting a blood transfusion before and I didn't think it really bothered me, but it kind of does in a way. It is a bit weird to think that someone else's blood will be slowly fed into me through a tube. Blood is a fairly personal thing and it's a bit icky. The general idea in first aid is to avoid getting other people's blood on you, but I'm about to sit down and let them put it in my arm. David did suggest that perhaps I could request blood from someone with super powers so that I get a real pick up but because it's been a bit of rush I thought it was a bit cheeky to ask. Maybe next time. This time I'll be happy just to have a bit of haemoglobin.
My festy shingles sore on my foot went hard and crusty and the other day it came off. It was quite interesting because the edges were joined to the skin but underneath it wasn't connected at all. It came off in a couple of big pieces and there is nice new skin on my foot now. I might try and get some pictures... I still have to take two tablets twice a day to keep the shingles at bay.
Other than that, I have finally folded all the clean washing so we all have clothes in our cupboards which is better than rummaging for underpants in the laundry every day. We've also had our gas stove connected after a few months without it due to the new kitchen. Dave is happy to be able to cook with it again.
Monday, March 1, 2010
Swab? Sure, why not.
We had a crap night last night. While we were still up, both Maesie and Elsie woke up upset - at one point it was simultaneous which is always fun. We sorted them out and went to bed at which point I ended up bawling for a bit because I'm over all of this. It wasn't about anything in particular, just a bit of everything. I'm okay today, I just have to let things out every now and again I suppose.
It was late by the time I had finished slobbering into tissues and then we were woken at 2 by Maesie and a wet bed. Cleaned her up, put her in the bottom bed but it was unsatisfactory, apparently. I went down once because she was cold. Put on a blanket. Back to bed. Down again because she was scared. Couldn't be bothered with tears and drama so she came into our bed. Dave was out to it and fully occupying his side, Maesie pretty much took all of mine so I dozed, clinging to the edge of the bed until about 6:15 when Elsie woke us up. Dave settled her and she slept till 7 so I got another 45 minutes of precarious semi-slumber. Needless to say we were all a little weary this morning.
Dave took the girls to pre-school and daycare and I went to have a blood test. We met back at home and then drove to the RAH for day 8 chemo. I had to wait a bit for my blood results but they were pretty good. Neutrophils started with a 1. I think that's good, I mean it's good for me because I have some sort of immune defense, but I do wonder whether the chemo is still hacking into the cancer as well as before. My haemoglobin was 81 so that's still down fairly low. I had a booster injection for it today and we'll see if it does anything.
Today at the oncology day centre I was lucky enough to be there on the day selected from the random draw for a VRE swab. I'm not quite sure what VRE stands for but it is a resistant bug they want to check for to keep tabs on it in the hospital. The most excellent news was that the bug lives around the human rear end, so that was the region requiring the swab. So off to the lav I went with my long cotton tip..... The bonuses with this whole process just keep coming! I really hope I don't have it because if I do, I'll have to sit in a little room to get my treatment and not be out where things are happening.
Although I was miserable last night, today I had a little kick up the pants because things could be quite a bit worse. There was an old guy next to me today and he had all sorts of tape on his nose holding in a tube which was tucked behind his ear when not in use. When he was using it, he had a big syringe with which he drew up some liquid food from a can and injected it into the tube. He was 'eating' through his nose. Yoiks. I am so glad I can still eat real food. I think he also had to be there for many hours.
Anyway, that's the end of my IV chemo for Round 5. Now I just have to get through the rest of the days without getting sick.
It was late by the time I had finished slobbering into tissues and then we were woken at 2 by Maesie and a wet bed. Cleaned her up, put her in the bottom bed but it was unsatisfactory, apparently. I went down once because she was cold. Put on a blanket. Back to bed. Down again because she was scared. Couldn't be bothered with tears and drama so she came into our bed. Dave was out to it and fully occupying his side, Maesie pretty much took all of mine so I dozed, clinging to the edge of the bed until about 6:15 when Elsie woke us up. Dave settled her and she slept till 7 so I got another 45 minutes of precarious semi-slumber. Needless to say we were all a little weary this morning.
Dave took the girls to pre-school and daycare and I went to have a blood test. We met back at home and then drove to the RAH for day 8 chemo. I had to wait a bit for my blood results but they were pretty good. Neutrophils started with a 1. I think that's good, I mean it's good for me because I have some sort of immune defense, but I do wonder whether the chemo is still hacking into the cancer as well as before. My haemoglobin was 81 so that's still down fairly low. I had a booster injection for it today and we'll see if it does anything.
Today at the oncology day centre I was lucky enough to be there on the day selected from the random draw for a VRE swab. I'm not quite sure what VRE stands for but it is a resistant bug they want to check for to keep tabs on it in the hospital. The most excellent news was that the bug lives around the human rear end, so that was the region requiring the swab. So off to the lav I went with my long cotton tip..... The bonuses with this whole process just keep coming! I really hope I don't have it because if I do, I'll have to sit in a little room to get my treatment and not be out where things are happening.
Although I was miserable last night, today I had a little kick up the pants because things could be quite a bit worse. There was an old guy next to me today and he had all sorts of tape on his nose holding in a tube which was tucked behind his ear when not in use. When he was using it, he had a big syringe with which he drew up some liquid food from a can and injected it into the tube. He was 'eating' through his nose. Yoiks. I am so glad I can still eat real food. I think he also had to be there for many hours.
Anyway, that's the end of my IV chemo for Round 5. Now I just have to get through the rest of the days without getting sick.
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