Saturday, January 30, 2010
"Hey"
I have omitted to include in my posts lately any news on testicle man. There isn't much to tell except that we have seen him in passing a couple of times, indeed yesterday was one such day. We have nodded to each other and uttered a brief "Hey". He has lost his hair and uses a cane when he walks.
Dose reduction #2
Yesterday we went to see the doctor. I don't think I've mentioned it anywhere but I have to see the doctor before commencing each cycle of chemo. It's mostly just a check up and review, plus I get to ask my questions and I did have a few yesterday.
Due to the length of time my white blood cells were low during round 3, I have been taken one step down the dose ladder and will receive a bit less etoposide, cyclophosphamide and doxorubicin during round 4.
At the end of round 4 I will have a CT scan and a chest x-ray to see what's been going on inside. If there has been no response or the cancer has progressed despite chemo then I won't be given BEACOPP any more and they'll think of something else. The doctor did say that he had never seen this happen, which is encouraging. I hope I am not the anomaly. If there has been a response then I will receive 4 more rounds of BEACOPP at the baseline doses, which means that etoposide, cyclophosphamide and doxorubicin will be reduced further.
I asked the doctor whether the reduced doses might mean that I won't be quite so tired during the last four rounds but he didn't really think it would work that way. The fatigue from chemo is cumulative, just how I am still trying to work out but it means that even with the lower doses I will continue to be tired. People often still struggle for many months after they have finished chemo with all sorts of side effects and the fatigue. I am not looking forward to that and will struggle if things continue to be crap once this is done.
Today I spent the day at a planning day for my church congregational council. It was a good day and I was feeling almost normal which was nice. Tomorrow I expect to feel okay as well and we are heading down to my sister's for a 2nd birthday. Monday I'll start round 4. Dave is back at work which means we won't be able to have a mini holiday at the unit this time and I am a bit sad about that but we've sorted other things out and it should work out okay.
The girls have started activities again and that is making things interesting too as they have classes and commitments that have to be worked in to what's going on. I do know that they don't have to be doing things and that we could just not sign up for stuff, but in some ways having every day the same with them rattling around home is just as difficult.
Due to the length of time my white blood cells were low during round 3, I have been taken one step down the dose ladder and will receive a bit less etoposide, cyclophosphamide and doxorubicin during round 4.
At the end of round 4 I will have a CT scan and a chest x-ray to see what's been going on inside. If there has been no response or the cancer has progressed despite chemo then I won't be given BEACOPP any more and they'll think of something else. The doctor did say that he had never seen this happen, which is encouraging. I hope I am not the anomaly. If there has been a response then I will receive 4 more rounds of BEACOPP at the baseline doses, which means that etoposide, cyclophosphamide and doxorubicin will be reduced further.
I asked the doctor whether the reduced doses might mean that I won't be quite so tired during the last four rounds but he didn't really think it would work that way. The fatigue from chemo is cumulative, just how I am still trying to work out but it means that even with the lower doses I will continue to be tired. People often still struggle for many months after they have finished chemo with all sorts of side effects and the fatigue. I am not looking forward to that and will struggle if things continue to be crap once this is done.
Today I spent the day at a planning day for my church congregational council. It was a good day and I was feeling almost normal which was nice. Tomorrow I expect to feel okay as well and we are heading down to my sister's for a 2nd birthday. Monday I'll start round 4. Dave is back at work which means we won't be able to have a mini holiday at the unit this time and I am a bit sad about that but we've sorted other things out and it should work out okay.
The girls have started activities again and that is making things interesting too as they have classes and commitments that have to be worked in to what's going on. I do know that they don't have to be doing things and that we could just not sign up for stuff, but in some ways having every day the same with them rattling around home is just as difficult.
Wednesday, January 27, 2010
Ups and downs
I should probably try and write something a bit more often than this, the days just seem to trundle past......
On Sunday I was pretty good. We went to church and things were fairly normal. I got my act together and wrote a shopping list and then went to the shops to get groceries and fruit and veg. Once I got home it was time to get the children into the bath etc. I had seen a recipe for noodle cakes and thought it might be worth a try to see if Maesie would eat them but no. Yet another refusal. She has been enjoying homemade ice blocks though and I have been putting carrot juice in them so at the moment it's vegetables by stealth in our house.
Monday was good for most of the day. Dave taught his Body Combat class in the morning and while that was on the girls went to the Starplex creche and I did Body Vive. It was a good class but I couldn't do everything and I was tired at the end. My muscles are wasting away and I felt a bit pathetic. After my class I went and had a blood test.
I got my results back and, huzzah!, my white blood cells were finally back up. 31.7 to be exact. That was good to know, but my haemoglobin was still down (83) and both my potassium and magnesium were low so I have been taking more tablets to get them up. I'm not entirely sure why potassium and magnesium are so affected - a question for the doctor. I've got a few questions for him this week.
Monday arvo was just at home and in the evening I watched the tennis and folded washing. Part way through though, I started to feel a bit weird. I was really tired, my eyes were a bit blurry and I could hardly even fold the washing. It wasn't that good. I went to bed. When I woke up yesterday, I still wasn't that good. I had a headache and still felt ultra pathetic. I had my breakfast and my tablets and did very little for the morning. By about midday I was a bit better and we went to Dave's folk's place for Australia Day. I felt better by the end of the day and was happy that things were back to being closer to normal.
So that gets me to today. I am still at Dave's mum and dad's with the girls because Dave is at work and we weren't sure how I'd be today and it's good to have a hand. I am taking it easy and not doing a whole lot, trying to stay up before treatment starts again next week.
The other day I noticed that the tips of my fingers have started to lose a bit of feeling. That was one of the possible side effects of one of the drugs so it's not really a surprise. It's not too bad just yet but I'm not sure how much worse it might get.
This round has been a bit tougher than number 2. I was more tired and washed out. I still managed to avoid infection and hospital, which is a bonus, but there have been quite a few days where I haven't really been able to do much. School has started now which means Dave is back at work and soon Maesie and Elsie will be back to pre-school and swimming and other things so I'm not quite sure how all of that will work in with treatment and my patheticness. I will need to come up with a plan.
The next round is number 4 and should be the last of the more intensive doses. After that I will have scans and tests to have a look at how effective the chemo cocktail has been. I am feeling a little nervous about that as it gets closer because I really want it all to be gone but I fear it won't be. I guess it depends a little bit on the results of the scans etc but at the moment the plan is for four more rounds at a reduced dose. I'm not sure what the difference in doses is, that's another question for the doctor on Friday.
On Sunday I was pretty good. We went to church and things were fairly normal. I got my act together and wrote a shopping list and then went to the shops to get groceries and fruit and veg. Once I got home it was time to get the children into the bath etc. I had seen a recipe for noodle cakes and thought it might be worth a try to see if Maesie would eat them but no. Yet another refusal. She has been enjoying homemade ice blocks though and I have been putting carrot juice in them so at the moment it's vegetables by stealth in our house.
Monday was good for most of the day. Dave taught his Body Combat class in the morning and while that was on the girls went to the Starplex creche and I did Body Vive. It was a good class but I couldn't do everything and I was tired at the end. My muscles are wasting away and I felt a bit pathetic. After my class I went and had a blood test.
I got my results back and, huzzah!, my white blood cells were finally back up. 31.7 to be exact. That was good to know, but my haemoglobin was still down (83) and both my potassium and magnesium were low so I have been taking more tablets to get them up. I'm not entirely sure why potassium and magnesium are so affected - a question for the doctor. I've got a few questions for him this week.
Monday arvo was just at home and in the evening I watched the tennis and folded washing. Part way through though, I started to feel a bit weird. I was really tired, my eyes were a bit blurry and I could hardly even fold the washing. It wasn't that good. I went to bed. When I woke up yesterday, I still wasn't that good. I had a headache and still felt ultra pathetic. I had my breakfast and my tablets and did very little for the morning. By about midday I was a bit better and we went to Dave's folk's place for Australia Day. I felt better by the end of the day and was happy that things were back to being closer to normal.
So that gets me to today. I am still at Dave's mum and dad's with the girls because Dave is at work and we weren't sure how I'd be today and it's good to have a hand. I am taking it easy and not doing a whole lot, trying to stay up before treatment starts again next week.
The other day I noticed that the tips of my fingers have started to lose a bit of feeling. That was one of the possible side effects of one of the drugs so it's not really a surprise. It's not too bad just yet but I'm not sure how much worse it might get.
This round has been a bit tougher than number 2. I was more tired and washed out. I still managed to avoid infection and hospital, which is a bonus, but there have been quite a few days where I haven't really been able to do much. School has started now which means Dave is back at work and soon Maesie and Elsie will be back to pre-school and swimming and other things so I'm not quite sure how all of that will work in with treatment and my patheticness. I will need to come up with a plan.
The next round is number 4 and should be the last of the more intensive doses. After that I will have scans and tests to have a look at how effective the chemo cocktail has been. I am feeling a little nervous about that as it gets closer because I really want it all to be gone but I fear it won't be. I guess it depends a little bit on the results of the scans etc but at the moment the plan is for four more rounds at a reduced dose. I'm not sure what the difference in doses is, that's another question for the doctor on Friday.
Saturday, January 23, 2010
Tennis and finance
Yesterday Dave went to work again and the girls were at child care so I was home alone again, which was for the best because I was feeling more useless than Thursday. I had a shower and managed to get dressed before lying on the bed and dozing for an hour because I felt shody. After that, around 10am by then, I felt like I was probably up to driving to have my blood test so I very carefully trundled up to the hospital to visit my blood taking friends and have another test.
Once back home safely I pretty much watched the tennis all day whilst filling in my budget spreadsheet with expenditure for the last six months because I haven't kept up at all. Riveting - don't all get jealous. See the fun you too could enjoy with cancer? I can't actually remember what happened once everyone came home. I think just bath, tea, bed etc.
At some point during the day I did get my blood results and my white blood cells were up a bit, but still stupid. 0.11 I think. Haemoglobin was also 85. It's supposed to be something around 115. Bloody dumb. I've had a booster to help make red cells and one for white but they aren't cutting the mustard. I'm a bit dark on my body at the moment, it's not working the way I would like it to. I know - rest, just do what I need to do, look after myself, chemo's nasty - blah, blah. I AM resting. I AM giving it lots of opportunity to recover and mend etc but it's not doing it in the timeframe I would like.
Today I have been a bit better. We all went to the pool for a bit this morning and I just blobbed around in the little kids pool - with my little kids, I should add. After that my mum and dad came round for lunch and to put in the dishwasher, so that is all connected and working now which is very cool. Later in the afternoon Dave took the girls to the park for a little while and I stayed home and did a couple of little jobs and then it was the end of the day routine and now it's night and I will be going to bed soon. Except that Elsie has just woken up and is now bellowing. Maybe I will be up for a while.
I forgot to mention that I had a blood test before going to the pool. Haemoglobin was much the same but my white blood cells were up a bit to 0.51. About time. I won't have a test tomorrow - mostly because there isn't anywhere open but also because I've had them for the past six days and I feel like a day off. I'll go on Monday. So there.
Once back home safely I pretty much watched the tennis all day whilst filling in my budget spreadsheet with expenditure for the last six months because I haven't kept up at all. Riveting - don't all get jealous. See the fun you too could enjoy with cancer? I can't actually remember what happened once everyone came home. I think just bath, tea, bed etc.
At some point during the day I did get my blood results and my white blood cells were up a bit, but still stupid. 0.11 I think. Haemoglobin was also 85. It's supposed to be something around 115. Bloody dumb. I've had a booster to help make red cells and one for white but they aren't cutting the mustard. I'm a bit dark on my body at the moment, it's not working the way I would like it to. I know - rest, just do what I need to do, look after myself, chemo's nasty - blah, blah. I AM resting. I AM giving it lots of opportunity to recover and mend etc but it's not doing it in the timeframe I would like.
Today I have been a bit better. We all went to the pool for a bit this morning and I just blobbed around in the little kids pool - with my little kids, I should add. After that my mum and dad came round for lunch and to put in the dishwasher, so that is all connected and working now which is very cool. Later in the afternoon Dave took the girls to the park for a little while and I stayed home and did a couple of little jobs and then it was the end of the day routine and now it's night and I will be going to bed soon. Except that Elsie has just woken up and is now bellowing. Maybe I will be up for a while.
I forgot to mention that I had a blood test before going to the pool. Haemoglobin was much the same but my white blood cells were up a bit to 0.51. About time. I won't have a test tomorrow - mostly because there isn't anywhere open but also because I've had them for the past six days and I feel like a day off. I'll go on Monday. So there.
Thursday, January 21, 2010
Just another day
Not a great deal to report. White blood cells are still low - 0.08 today. Haemoglobin the same as the other day (88). Potassium coming back up. C'mon bone marrow, get to work.
Dave had to go to work today so some more lovely friends looked after the girls so that I didn't have to worry about them and I could potter around home and rest as needed. It was a good day. I watched some terrible daytime t.v., folded some clothes and stayed cool inside the house. Boring but better that than spicing things up with a trip to hospital.
One thing that is not cancer related but has been a bit of a bother lately is that Elsie keeps waking up during the night and not settling easily back into her cot. This means that Dave and I are getting broken sleep and that Dave (mostly) gets up a couple of times a night. He's getting pretty tired. We have resorted at times to taking her into our bed where she either sleeps for a while or stuffs around for a while before we take her back to her bed and she goes back to sleep there. It's a bit weird really and it's probably not a good habit but we're not up for listening to a screaming baby in the middle of the night. Anyway, that's one of the things that adds to the mix here.
Dave had to go to work today so some more lovely friends looked after the girls so that I didn't have to worry about them and I could potter around home and rest as needed. It was a good day. I watched some terrible daytime t.v., folded some clothes and stayed cool inside the house. Boring but better that than spicing things up with a trip to hospital.
One thing that is not cancer related but has been a bit of a bother lately is that Elsie keeps waking up during the night and not settling easily back into her cot. This means that Dave and I are getting broken sleep and that Dave (mostly) gets up a couple of times a night. He's getting pretty tired. We have resorted at times to taking her into our bed where she either sleeps for a while or stuffs around for a while before we take her back to her bed and she goes back to sleep there. It's a bit weird really and it's probably not a good habit but we're not up for listening to a screaming baby in the middle of the night. Anyway, that's one of the things that adds to the mix here.
Tuesday, January 19, 2010
Helpful things during treatment
There are a number of things I have been meaning to note for anyone who may read this looking for things that I found helpful during treatment.
I read a few books about all sorts of things that might be helpful and I ended up choosing a few things to take. I started them once I ended up in hospital during Round 1 and I think they have helped and not just had a placebo effect.
I have been taking CoEnzyme Q10 and Glutamine each day. I can't quite remember what they are for and I can't be bothered getting the bottles. I think the enzyme is supposed to assist with general energy. Glutamine, I think, is good for gastro intestinal mucous lining stuff and I felt it reduced the throat/mouth soreness I had. I have also been taking vitamin C, but just when I feel like it/remember.
I haven't been drinking coffee and have had only the occasional black tea. Mostly because I don't actually feel like drinking them. I have, however, taken up green tea and have about 3 or 4 cups a day. It's nice to drink and is supposed to be full of antioxidants which apparently help clean up free radicals in the body.
I have also been using a mouthwash for dry mouths. I think it's called Biotene. I don't use it everyday, just when my mouth starts feeling yuck. It is soothing and I think it has helped my mouth not to get too sore.
That's about it in the extra bits and pieces. I like to get a few minutes in the sun each day and it is nice to be in the yard or at the park for a while, outside in the fresh air.
Hope that helps someone....
I read a few books about all sorts of things that might be helpful and I ended up choosing a few things to take. I started them once I ended up in hospital during Round 1 and I think they have helped and not just had a placebo effect.
I have been taking CoEnzyme Q10 and Glutamine each day. I can't quite remember what they are for and I can't be bothered getting the bottles. I think the enzyme is supposed to assist with general energy. Glutamine, I think, is good for gastro intestinal mucous lining stuff and I felt it reduced the throat/mouth soreness I had. I have also been taking vitamin C, but just when I feel like it/remember.
I haven't been drinking coffee and have had only the occasional black tea. Mostly because I don't actually feel like drinking them. I have, however, taken up green tea and have about 3 or 4 cups a day. It's nice to drink and is supposed to be full of antioxidants which apparently help clean up free radicals in the body.
I have also been using a mouthwash for dry mouths. I think it's called Biotene. I don't use it everyday, just when my mouth starts feeling yuck. It is soothing and I think it has helped my mouth not to get too sore.
That's about it in the extra bits and pieces. I like to get a few minutes in the sun each day and it is nice to be in the yard or at the park for a while, outside in the fresh air.
Hope that helps someone....
Neutrophils, neutrophils, wherefore art thou neutrophils
Today may well be one of the lowest days during this whole process. I am pathetically lack lustre and have been either sitting down or lying on my bed for the afternoon. I'm not happy about it. I got a call to say that I need to have daily blood tests so I had to have another one today and the white cell result was an almighty 0.12. That's too low to work out how many neutrophils there are, if indeed any remain at all. So I'm living in neutropenic city for a few days. My haemoglobin had not dropped any further though so that is encouraging.
Tomorrow Dave has a voice-over job and is taking the girls to his sister's who will then take them for a day at the beach with family. I will be resting at home and I am looking forward to being able to not do much without the youngsters around because they are so demanding when they are here.
I will also be praying for white blood cells, including neutrophils and some haemoglobin to boot. I might also put in a request for no infections and a bit more energy. Not that I want to be greedy but I will hold to Philippians 4:6,7 which tells me "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."
Tomorrow Dave has a voice-over job and is taking the girls to his sister's who will then take them for a day at the beach with family. I will be resting at home and I am looking forward to being able to not do much without the youngsters around because they are so demanding when they are here.
I will also be praying for white blood cells, including neutrophils and some haemoglobin to boot. I might also put in a request for no infections and a bit more energy. Not that I want to be greedy but I will hold to Philippians 4:6,7 which tells me "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."
Monday, January 18, 2010
Round 3 Day 8
Blood test this morning then into the RAH for vincristine and bleomycin. We dropped the girls at a friend's place on the way in (thanks!) and weren't too late for my appointment. I had the nurse who had missed the mark a couple of times previously but she got it first go today so that was nice.
My blood results were low - I think she said my neutrophils were around 0.4. She also said my haemoglobin is low (88) and that if it goes down much further I might need to have some blood. That may explain my low energy today. I am quite tired and will be going to bed as soon as this is posted. I'll have my white blood cell booster injection tomorrow and then another blood test in a couple of days. Hopefully things will have improved.
On the way home we called in at a couple of places that sell whitegoods and ended up purchasing a dishwasher. It is sitting in the kitchen ready to be hooked up so that is pretty exciting. Dave is pumped. He thinks it will change his life. I guess he's partly right...
We also picked up the children on the way home and they are definitely life-changing :)
I am a little nervous about the next few days because I don't want to end up at hospital. I think I really should do not much. It's so hard though when there are so many things to do, even if it's just little bits and pieces.
PS The front yard is still there and it is still beautiful. It warms my heart.
My blood results were low - I think she said my neutrophils were around 0.4. She also said my haemoglobin is low (88) and that if it goes down much further I might need to have some blood. That may explain my low energy today. I am quite tired and will be going to bed as soon as this is posted. I'll have my white blood cell booster injection tomorrow and then another blood test in a couple of days. Hopefully things will have improved.
On the way home we called in at a couple of places that sell whitegoods and ended up purchasing a dishwasher. It is sitting in the kitchen ready to be hooked up so that is pretty exciting. Dave is pumped. He thinks it will change his life. I guess he's partly right...
We also picked up the children on the way home and they are definitely life-changing :)
I am a little nervous about the next few days because I don't want to end up at hospital. I think I really should do not much. It's so hard though when there are so many things to do, even if it's just little bits and pieces.
PS The front yard is still there and it is still beautiful. It warms my heart.
Sunday, January 17, 2010
The week in review
Apologies for the lack of updates but the summary of the past week is that everything has been going quite well.
As for the details...
Tuesday was etoposide at the RAH late in the morning. We introduced ourselves to and had a little chat with another couple in the oncology day centre - my neighbour for the day, Monica. After that we went to Word bookshop for a while, then lunch. Wedges with sour cream and sweet chilli. Not really very wholesome or nutritious and I'm not sure they're recommended in any of my 'cancer diet' books but they were delicious.
After that we headed to the Bible College of South Australia where I returned some hideously overdue books and found out that I have completed all the requirements for the Graduate Diploma of Divinity and so I'm finished! Hoorah! I ended up passing the last essay and so passed the subject too. That was very good news.
Following BCSA we spent an hour browsing in Angus and Robertson, which was grand. Even better was that I had some vouchers to spend so I actually purchased a few books. I was feeling a bit tired after all this so we headed back to the unit for a little while, prior to going to see my Grandma who is in a nursing home near the unit. We got there at tea time and my mum was there to feed grandma. It was good to catch up with my mum and see my grandma but it was also a bit sad. Grandma can no longer express her thoughts or remember much or write things down, but she still understands things and has things she would like to say. Every now and then she would hold my mum's hands and look at her with pleading eyes, willing mum to be able to work out what Grandma was thinking. I got a little upset when I realised that I don't actually know a great deal about my Grandma and I'm not sure I've ever sat down and asked her about her life. She wasn't much of a talker either, so she didn't volunteer much but now those stories are lost because she can't tell them.
Wednesday was more etoposide then down to West Beach for lunch and to pick up the girls. We then endured a less than pleasant drive down to Victor Harbor as Elsie cried on and off for the whole way. We survived though and settled into our unit accommodation at the caravan park before visiting some friends for dinner, which was just lovely.
Thursday we spent most of the day at my sister's, at the farm in Milang. The cousins played quite well and we had a nice little catch up. It was another good day.
Thursday night was the start of the Church Missionary Society Summer Encounter, a conference about what's happening with SA CMS missionaries around the world and about mission more broadly. Dave stayed at the unit and put the kids to bed and I went to the session. It was nice to be out and I caught up with lots of friends we don't get to see very much.
Friday and Saturday have been much of the same. We've been at the conference, enjoying Victor, catching up with friends. Fairly normal. I have continued swilling down my breakfast chaser of tablets and I took my thermometer with me and checked my temperature occasionally but other than that, mostly the way things would have otherwise been.
We did however, return home today to yet another blessing. From what we can work out, a number of sneaky folk conspired during our week away and we have been 'front-yard blitzed'. We could not believe it when we turned into the driveway. We cried. Our front yard has been a bit of a disaster over the five or so years we have been here. Now it is so lovely. We just have to make sure we keep it all alive and weed-free! We are continually touched by the generosity and love shown to us by others and thank the Lord for keeping us in His hands and providing so much more than what we need.
Now the postman won't deliver my mail because he won't recognise the yard!
As for the details...
Tuesday was etoposide at the RAH late in the morning. We introduced ourselves to and had a little chat with another couple in the oncology day centre - my neighbour for the day, Monica. After that we went to Word bookshop for a while, then lunch. Wedges with sour cream and sweet chilli. Not really very wholesome or nutritious and I'm not sure they're recommended in any of my 'cancer diet' books but they were delicious.
After that we headed to the Bible College of South Australia where I returned some hideously overdue books and found out that I have completed all the requirements for the Graduate Diploma of Divinity and so I'm finished! Hoorah! I ended up passing the last essay and so passed the subject too. That was very good news.
Following BCSA we spent an hour browsing in Angus and Robertson, which was grand. Even better was that I had some vouchers to spend so I actually purchased a few books. I was feeling a bit tired after all this so we headed back to the unit for a little while, prior to going to see my Grandma who is in a nursing home near the unit. We got there at tea time and my mum was there to feed grandma. It was good to catch up with my mum and see my grandma but it was also a bit sad. Grandma can no longer express her thoughts or remember much or write things down, but she still understands things and has things she would like to say. Every now and then she would hold my mum's hands and look at her with pleading eyes, willing mum to be able to work out what Grandma was thinking. I got a little upset when I realised that I don't actually know a great deal about my Grandma and I'm not sure I've ever sat down and asked her about her life. She wasn't much of a talker either, so she didn't volunteer much but now those stories are lost because she can't tell them.
Wednesday was more etoposide then down to West Beach for lunch and to pick up the girls. We then endured a less than pleasant drive down to Victor Harbor as Elsie cried on and off for the whole way. We survived though and settled into our unit accommodation at the caravan park before visiting some friends for dinner, which was just lovely.
Thursday we spent most of the day at my sister's, at the farm in Milang. The cousins played quite well and we had a nice little catch up. It was another good day.
Thursday night was the start of the Church Missionary Society Summer Encounter, a conference about what's happening with SA CMS missionaries around the world and about mission more broadly. Dave stayed at the unit and put the kids to bed and I went to the session. It was nice to be out and I caught up with lots of friends we don't get to see very much.
Friday and Saturday have been much of the same. We've been at the conference, enjoying Victor, catching up with friends. Fairly normal. I have continued swilling down my breakfast chaser of tablets and I took my thermometer with me and checked my temperature occasionally but other than that, mostly the way things would have otherwise been.
We did however, return home today to yet another blessing. From what we can work out, a number of sneaky folk conspired during our week away and we have been 'front-yard blitzed'. We could not believe it when we turned into the driveway. We cried. Our front yard has been a bit of a disaster over the five or so years we have been here. Now it is so lovely. We just have to make sure we keep it all alive and weed-free! We are continually touched by the generosity and love shown to us by others and thank the Lord for keeping us in His hands and providing so much more than what we need.
Now the postman won't deliver my mail because he won't recognise the yard!
Monday, January 11, 2010
Hi ho, hi ho, it's off to the RAH we go
We were so late this morning for day one of Round 3. I was booked in to the RAH at 10 but we eventually got there about 11:20. It all started yesterday when we didn't get enough jobs, tidying and packing done during the day. We ended up staying up late trying to bring some order to the house so that the splendid young man caring for the place didn't have a total dump to deal with and then we had to pack.
We had a broken sleep (thanks, kids) and were up at 6:30 with sandpaper eyes with a goal of leaving around 8. Ha! I think it was 9:15. Anyway, we took the girls down to West Beach for the next couple of nights with grandparents Mac, God bless them. Hopefully they will all have a great time.
I had called the RAH to let them know I would be late so when we got there, it wasn't a hassle. Unfortunately my allocated nurse for today was one I have not had yet but I have seen her in action - having two cracks at getting a cannula in a guy's arm and botching them both, prior to getting someone else to do it. Two round bandaids on my arm later and another nurse eased it in splendidly. The original nurse was good at the rest of the process except for when she told another chemo patient who had no hair and had been waiting for her bags for over an hour that the chemo preparation section was so flat out today they were "losing their hair". Not a phrase I would have chosen to use, given the audience. I would have allowed "pulling their hair out".
I received my bags of goodies mostly without incident, just my usual sinus reaction to cyclophosfamide (which was annoying), enjoying the November 2009 issue of Gardening Australia. Incidentally, now is the time to take cuttings in the garden, but only early in the morning or late in the afternoon - keep them out of the sun. I may do this when I get home.
We then went back to the unit in Black Forest, unpacked and had a cup of tea before going back to the RAH for good old Mesna the bladder protector. Then the unit again for tea and out to Macca's for icecream and free WiFi to type this.
When we went back in for the Mesna, the guy mentioned in a previous post, who we have unfortunately nicknamed 'Testicle Man' for now, was reclining getting his chemo. I worked out he's already on his second round and this week should be getting chemo everyday. We shared a nod of acknowledgement/recognition when they left so perhaps I will tell him about Lance if we see them again. He was on crutches and I assume, which can be dangerous, that he has had surgery. I did overhear - I know, it's eavesdropping blah, blah but he was in the next chair over, it's only 2 metres away, I don't listen on purpose, really. I like to think of it as aural observance. Anyway, they said last time that they didn't have kids yet and that they had collected some swimmers for later (just like Lance). It makes me glad and thankful that we have the girls and that we don't have the added stress of those sorts of things. Five days straight (also what Lance had) is a tough gig and I feel he's got it harder than me. Not that it's a competition, but it's good for a bit of perspective and my heart goes out to them.
Enough for today. Etoposide tomorrow.
We had a broken sleep (thanks, kids) and were up at 6:30 with sandpaper eyes with a goal of leaving around 8. Ha! I think it was 9:15. Anyway, we took the girls down to West Beach for the next couple of nights with grandparents Mac, God bless them. Hopefully they will all have a great time.
I had called the RAH to let them know I would be late so when we got there, it wasn't a hassle. Unfortunately my allocated nurse for today was one I have not had yet but I have seen her in action - having two cracks at getting a cannula in a guy's arm and botching them both, prior to getting someone else to do it. Two round bandaids on my arm later and another nurse eased it in splendidly. The original nurse was good at the rest of the process except for when she told another chemo patient who had no hair and had been waiting for her bags for over an hour that the chemo preparation section was so flat out today they were "losing their hair". Not a phrase I would have chosen to use, given the audience. I would have allowed "pulling their hair out".
I received my bags of goodies mostly without incident, just my usual sinus reaction to cyclophosfamide (which was annoying), enjoying the November 2009 issue of Gardening Australia. Incidentally, now is the time to take cuttings in the garden, but only early in the morning or late in the afternoon - keep them out of the sun. I may do this when I get home.
We then went back to the unit in Black Forest, unpacked and had a cup of tea before going back to the RAH for good old Mesna the bladder protector. Then the unit again for tea and out to Macca's for icecream and free WiFi to type this.
When we went back in for the Mesna, the guy mentioned in a previous post, who we have unfortunately nicknamed 'Testicle Man' for now, was reclining getting his chemo. I worked out he's already on his second round and this week should be getting chemo everyday. We shared a nod of acknowledgement/recognition when they left so perhaps I will tell him about Lance if we see them again. He was on crutches and I assume, which can be dangerous, that he has had surgery. I did overhear - I know, it's eavesdropping blah, blah but he was in the next chair over, it's only 2 metres away, I don't listen on purpose, really. I like to think of it as aural observance. Anyway, they said last time that they didn't have kids yet and that they had collected some swimmers for later (just like Lance). It makes me glad and thankful that we have the girls and that we don't have the added stress of those sorts of things. Five days straight (also what Lance had) is a tough gig and I feel he's got it harder than me. Not that it's a competition, but it's good for a bit of perspective and my heart goes out to them.
Enough for today. Etoposide tomorrow.
Saturday, January 9, 2010
An alternate life
I have continued to be well and have enjoyed the last few days.
On Thursday evening I made it to an RPM class and although I did take it a little easier than I would have in my former life, I still worked fairly hard and had a great class.
Yesterday, Friday, was our tenth wedding anniversary. Hooray! It doesn't seem like that long at all, but at the same time it seems like it's always been this way. One of those weird things. As a gift to us, both girls had a particularly bad night's sleep so we weren't that happy yesterday morning. However this soon changed as we dropped them with their blessed aunt, uncle and cousins for the next 24 hours.
Another special anniversary gift to us was an appointment with Dr Giri at the RAH. I'm so glad we could share our momentous day with the lymphoma specialist. At least I didn't have to have an anniversary IV bag. Dr Giri didn't have a whole lot to say except that he thought I was doing well and was glad to see that I had been feeling better this round. He said some people on BEACOPP end up in hospital every round, so I'm doing better than that.
After that we were on a little anniversary adventure sans kiddies. We had a wander in the city and did a little shopping. I got a new hat which I will take a picture of and put in soon. We had a delicious dinner at Vietnam Star City, an icecream at Glenelg and then stayed at a hotel in Adelaide like carefree young folk. We continued our alternate life with a late breakfast at The Store followed by Avatar 3D. After that it was back to reality as we returned to our children and then our messy house. It was a lovely 24 hours....
I would like to note, however, that I think the cinema is a total sham and that I think it is a complete farce that there are no concession tickets for 3D movies. $20 for a ticket and 3D glasses. So crap. They make you pay a gazillion dollars for a box of puffed corn that cost them about 50 cents and then another gazillion dollars for a cup of carbonated, flavoured water that costs them another 50 cents. It's a joke. I know you don't have to buy it, and we don't always, but I still think it's daylight robbery. Bastards. Apart from that, the movie was great.
I would also like to note that Maesie had a ripper of a tanty at bedtime tonight. It was a bit late and she had fallen asleep in the car so she was all out of sorts. She was screaming and yelling from her bed and it was a real doozy. Towards the end she screamed out "I don't love you mummy". I had expected this at some point but didn't think it would occur quite so early in her life. Anyway, Dave went down after that and sorted things out and in amongst it all she said she didn't like that I was sick and she didn't want me to go to the doctors. It's strange the way their young minds work. It looks like they're going okay with things but really there's more going on in there than they know how to say. So that upset me a little bit - poor Maesie's getting messed about by all this more than I thought.
On Thursday evening I made it to an RPM class and although I did take it a little easier than I would have in my former life, I still worked fairly hard and had a great class.
Yesterday, Friday, was our tenth wedding anniversary. Hooray! It doesn't seem like that long at all, but at the same time it seems like it's always been this way. One of those weird things. As a gift to us, both girls had a particularly bad night's sleep so we weren't that happy yesterday morning. However this soon changed as we dropped them with their blessed aunt, uncle and cousins for the next 24 hours.
Another special anniversary gift to us was an appointment with Dr Giri at the RAH. I'm so glad we could share our momentous day with the lymphoma specialist. At least I didn't have to have an anniversary IV bag. Dr Giri didn't have a whole lot to say except that he thought I was doing well and was glad to see that I had been feeling better this round. He said some people on BEACOPP end up in hospital every round, so I'm doing better than that.
After that we were on a little anniversary adventure sans kiddies. We had a wander in the city and did a little shopping. I got a new hat which I will take a picture of and put in soon. We had a delicious dinner at Vietnam Star City, an icecream at Glenelg and then stayed at a hotel in Adelaide like carefree young folk. We continued our alternate life with a late breakfast at The Store followed by Avatar 3D. After that it was back to reality as we returned to our children and then our messy house. It was a lovely 24 hours....
I would like to note, however, that I think the cinema is a total sham and that I think it is a complete farce that there are no concession tickets for 3D movies. $20 for a ticket and 3D glasses. So crap. They make you pay a gazillion dollars for a box of puffed corn that cost them about 50 cents and then another gazillion dollars for a cup of carbonated, flavoured water that costs them another 50 cents. It's a joke. I know you don't have to buy it, and we don't always, but I still think it's daylight robbery. Bastards. Apart from that, the movie was great.
I would also like to note that Maesie had a ripper of a tanty at bedtime tonight. It was a bit late and she had fallen asleep in the car so she was all out of sorts. She was screaming and yelling from her bed and it was a real doozy. Towards the end she screamed out "I don't love you mummy". I had expected this at some point but didn't think it would occur quite so early in her life. Anyway, Dave went down after that and sorted things out and in amongst it all she said she didn't like that I was sick and she didn't want me to go to the doctors. It's strange the way their young minds work. It looks like they're going okay with things but really there's more going on in there than they know how to say. So that upset me a little bit - poor Maesie's getting messed about by all this more than I thought.
Wednesday, January 6, 2010
Wednesday week 3 and all's well
It's Wednesday of the third week - day 17. Things are going fairly well. I still feel okay mostly but am pretty tired. I keep reading my book at night though so I haven't been going to sleep as early as I should.
Dad and Dave have been working on the new kitchen for the last couple of days and it's pretty much done, apart from a number of jobs that have to wait until the gas man has come and we have a dishwasher etc. The pantry cupboard is done though so tomorrow I think I will be putting things back in there.
This morning I took the girls to the playground for a little while before it got too hot and then this afternoon I took them to Dave's sister's so I have been out and about a bit today and it has been good. Quite normal in fact. The only thing that is a bit annoying at the moment is a dose of 'holidayitis'. Everyone at home, no pre-school, no play group, no days at work for me. Getting a bit stir crazy and it's hot and about to get hotter. Next week will be a bit different though as I start treatment again and then head down to Victor Harbor for the Church Missionary Society Summer Conference so hopefully that will all be good.
I suppose I should be glad that my life is trundling along reasonably normally and that it is much like any other mother of small children. I am glad that I am not just in bed all day or feeling sick as a dog because that would be mighty hard. Hmmmm. Upon reflection, no matter how normal it might feel, it's still crap.
In other news, I emailed my last essay in the other day. Hopefully I pass.
Dad and Dave have been working on the new kitchen for the last couple of days and it's pretty much done, apart from a number of jobs that have to wait until the gas man has come and we have a dishwasher etc. The pantry cupboard is done though so tomorrow I think I will be putting things back in there.
This morning I took the girls to the playground for a little while before it got too hot and then this afternoon I took them to Dave's sister's so I have been out and about a bit today and it has been good. Quite normal in fact. The only thing that is a bit annoying at the moment is a dose of 'holidayitis'. Everyone at home, no pre-school, no play group, no days at work for me. Getting a bit stir crazy and it's hot and about to get hotter. Next week will be a bit different though as I start treatment again and then head down to Victor Harbor for the Church Missionary Society Summer Conference so hopefully that will all be good.
I suppose I should be glad that my life is trundling along reasonably normally and that it is much like any other mother of small children. I am glad that I am not just in bed all day or feeling sick as a dog because that would be mighty hard. Hmmmm. Upon reflection, no matter how normal it might feel, it's still crap.
In other news, I emailed my last essay in the other day. Hopefully I pass.
Saturday, January 2, 2010
A very good day
Today was a very good day. For starters I had a good, uninterrupted sleep last night because the girls had been bundled off for a sleep over with cousins. It was lovely. I woke with an achy leg though and although it was painful, I was glad to have it because it meant my bone marrow was cranking out white blood cells and other good things.
David made fresh juice with my new Christmas juicer and I read the paper. It was very nice. After that I went for a quick blood test and once back home I spent a few hours on the last essay I have to finish for my Graduate Diploma of Divinity. It's almost done and has been for the last couple of months - I just have to knuckle down and finish it.
I received a call from the Oncology Day Centre to say that my blood tests showed my neutrophil count was 0.48 and my total white blood cell count was 0.9 so although things are still a bit low, they're getting there.
During the day we also had a visit from an electrical hero who finished off the wiring for the kitchen so the oven is now operational as are all the power points. It's very exciting.
After that we picked up the girls and then drove to Mt Barker to catch up with my family for early pizza tea for my mum's birthday. It was slightly crazy with 4 kids 4 years and under but it was a nice time together.
The main things that are a bit troublesome at the moment are low energy levels, sore teeth and gums and a couple of mouth ulcers from where I bit my lip (one of those ones that crunch - arrrrg) that aren't really healing and are sore. I guess that's not too bad. Hopefully the coming week will continue to be good as Friday will be our 10th wedding anniversary!
David made fresh juice with my new Christmas juicer and I read the paper. It was very nice. After that I went for a quick blood test and once back home I spent a few hours on the last essay I have to finish for my Graduate Diploma of Divinity. It's almost done and has been for the last couple of months - I just have to knuckle down and finish it.
I received a call from the Oncology Day Centre to say that my blood tests showed my neutrophil count was 0.48 and my total white blood cell count was 0.9 so although things are still a bit low, they're getting there.
During the day we also had a visit from an electrical hero who finished off the wiring for the kitchen so the oven is now operational as are all the power points. It's very exciting.
After that we picked up the girls and then drove to Mt Barker to catch up with my family for early pizza tea for my mum's birthday. It was slightly crazy with 4 kids 4 years and under but it was a nice time together.
The main things that are a bit troublesome at the moment are low energy levels, sore teeth and gums and a couple of mouth ulcers from where I bit my lip (one of those ones that crunch - arrrrg) that aren't really healing and are sore. I guess that's not too bad. Hopefully the coming week will continue to be good as Friday will be our 10th wedding anniversary!
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