17 December 2016 - another clinic appointment done
Since the last post I have been for my fortnightly blood test and also had a clinic appointment. That was over 1.5 hours late (becuase my consultant was also on the ward and because they always have to overbook the clinics to get the appointments in when the patients need them). I ate my lunch, read my book, was in and out of the consultant's office in 10 minutes (brilliant!) - bloods all within expected range. I also popped up to E10 to deliver some biscuits and to wish them a Merry Christmas. It is always nice to see the staff up there and they are so cheerful and friendly. It's also a wake-up call to see patients who are just starting their treatment - makes me realise how much I have improved since this time last year.
So, I have to go for more blood tests next Friday and after that the next clinic is 10 January. I am still noticing that the neuropathy in my feet continues and I am pretty stiff of feet and ankles in the morning (Andrew mutters darkly - 'old age'). Otherwise I only notice the tiredness. I am now on holiday until 9 January so am looking forward to getting up later and hopefully staying awake later too.
Saturday, 17 December 2016
Saturday, 19 November 2016
Reflections on this week’s outpatient chemo
Tuesday’s appointment and treatment was fine. My bloods are still holding steady and I don’t have much of a reaction to the vincristine – a bit more neuropathy and a little nausea, but nothing too awful. I got a bit of a shock though while I was in the outpatients ward – someone I was in hospital with last August who had the same type of ALL (acute lymphoblastic leukaemia) that I did came in. Last time I saw him a few months ago he had just had a stem cell transplant and was looking really well. On Tuesday he didn’t look well at all and I was sad to hear that he has had a relapse and there is no further treatment they can give him. He was very calm about it and talked about his bucket list and the gifts he was buying for his family to remember him by. It was a salutary reminder that this disease is not to be trifled with.
On Thursday I spent all day in the outpatient ward all day from 08:15 to 18:35. Although my bloods were fine, there was a question mark over the clotting factors. So I had blood tests first thing in the morning again and had the 1.5 hours of intravenous bone strengthening medication while we waited for the blood results. Those came back at 12:30 and they decided to give me two units of plasma before the intrathecal which took until 14:40. Then I waited for the doctor to come and do the intrathecal which happened around 17:00. This time my back was not being cooperative so I ended up having it sitting up (a new departure) and felt rather like a pincushion. Of course I was then too late to collect the rest of my medication from the pharmacy so that meant another trip to the hospital on Friday afternoon. Oh well, at least it will be another 3 months before I need to have the outpatient chemo again.
One of the nice things about coming in for treatment once every 3 months is seeing the staff and other patients on the ward. During the year I was in and out of here 3 or 4 times a week I got to know the staff and began to feel they were like a second family. It is good to catch up with them again, and also with other patients I haven’t seen for a while.
Tuesday’s appointment and treatment was fine. My bloods are still holding steady and I don’t have much of a reaction to the vincristine – a bit more neuropathy and a little nausea, but nothing too awful. I got a bit of a shock though while I was in the outpatients ward – someone I was in hospital with last August who had the same type of ALL (acute lymphoblastic leukaemia) that I did came in. Last time I saw him a few months ago he had just had a stem cell transplant and was looking really well. On Tuesday he didn’t look well at all and I was sad to hear that he has had a relapse and there is no further treatment they can give him. He was very calm about it and talked about his bucket list and the gifts he was buying for his family to remember him by. It was a salutary reminder that this disease is not to be trifled with.
On Thursday I spent all day in the outpatient ward all day from 08:15 to 18:35. Although my bloods were fine, there was a question mark over the clotting factors. So I had blood tests first thing in the morning again and had the 1.5 hours of intravenous bone strengthening medication while we waited for the blood results. Those came back at 12:30 and they decided to give me two units of plasma before the intrathecal which took until 14:40. Then I waited for the doctor to come and do the intrathecal which happened around 17:00. This time my back was not being cooperative so I ended up having it sitting up (a new departure) and felt rather like a pincushion. Of course I was then too late to collect the rest of my medication from the pharmacy so that meant another trip to the hospital on Friday afternoon. Oh well, at least it will be another 3 months before I need to have the outpatient chemo again.
One of the nice things about coming in for treatment once every 3 months is seeing the staff and other patients on the ward. During the year I was in and out of here 3 or 4 times a week I got to know the staff and began to feel they were like a second family. It is good to catch up with them again, and also with other patients I haven’t seen for a while.
November 2016 (Post 2)
Reflections on returning to work
I was very much looking forward to returning to work when I wrote in July. I have been back full-time for nearly three months now. I really enjoy being back among my colleagues but I have not found it easy to settle back into work and I definitely don’t work as quickly. I find that I worry more about things and need to try hard to keep things in perspective. My colleagues have been brilliant and very supportive but I expect it will be a few months yet before I feel back to ‘normal’.
Returning to work has been easy to manage compared to managing leisure activities. I am very tired by the time that I come home from work and need to go to bed by 10pm. If we sit down to watch the tv in the evening I am quite likely to fall asleep. I also don’t have the motivation to do things in the evening and I am now realising that I should have given up more of my leisure activities while I was ill so that I didn’t feel obligated to keep them up now when I really don’t have the energy. The trouble is that when you are ill you don’t want to give things up because they are your link to the real world and to the life you hope to return to. But I didn’t realise how tired I would be from work and how stressed I was going to feel if I couldn’t live up to my own expectations – it is definitely my own expectations that need managing, other people are not putting any pressure on me.
So my advice to anyone in the same situation, ie going back to work after treatment, is to do what they always advise on retirement courses – wait 6 months before you commit to anything to work out firstly how much energy you have and also what you really want to do. Of course I have not taken this advice! I have managed to give up one commitment but it will be a few months before I can give up anything else. Do what I say not as I did!!
Reflections on returning to work
I was very much looking forward to returning to work when I wrote in July. I have been back full-time for nearly three months now. I really enjoy being back among my colleagues but I have not found it easy to settle back into work and I definitely don’t work as quickly. I find that I worry more about things and need to try hard to keep things in perspective. My colleagues have been brilliant and very supportive but I expect it will be a few months yet before I feel back to ‘normal’.
Returning to work has been easy to manage compared to managing leisure activities. I am very tired by the time that I come home from work and need to go to bed by 10pm. If we sit down to watch the tv in the evening I am quite likely to fall asleep. I also don’t have the motivation to do things in the evening and I am now realising that I should have given up more of my leisure activities while I was ill so that I didn’t feel obligated to keep them up now when I really don’t have the energy. The trouble is that when you are ill you don’t want to give things up because they are your link to the real world and to the life you hope to return to. But I didn’t realise how tired I would be from work and how stressed I was going to feel if I couldn’t live up to my own expectations – it is definitely my own expectations that need managing, other people are not putting any pressure on me.
So my advice to anyone in the same situation, ie going back to work after treatment, is to do what they always advise on retirement courses – wait 6 months before you commit to anything to work out firstly how much energy you have and also what you really want to do. Of course I have not taken this advice! I have managed to give up one commitment but it will be a few months before I can give up anything else. Do what I say not as I did!!
November 2016 (post 1)
Maintenance treatment
Sorry for the long silence. I thought I might discontinue the blog but the maintenance treatment brings with it new challenges which I thought might be of interest. I shall probably only post once or twice a month.
I am getting used to the maintenance regime properly and developing my own regimes for dealing with it. I have bought myself a 7 day pill box so that I can keep track of the different drugs I have to take on different days. I take acyclovir (anti-viral) twice a day and antibiotics twice a day on Saturdays and Sundays. The upside of this is that I haven’t had a cold/cough/sniffle at all even though people at work and my car sharer have been suffering. I also take chemo drugs every day (mercaptopurine) and methotrexate weekly on Wednesdays, except the week before the intrathecal. Then every three months I also have 5 days of steroids. You can see why I need the pill box!
I visit the hospital once a month on a Tuesday to see my consultant, and she usually asks for an extra blood test in between appointments. I have finally developed a system for blood tests. I come down to Addenbrookes on Monday lunchtimes – it’s only a 20 minute cycle ride from work, so I can fit it into my lunchhour . If I arrive at 1:30 I rarely have to wait longer than 10 minutes and then I can be sure that the results will be on the system when I see the consultant the next day. It’s much better than arriving two hours early for an appointment to have the bloods and then not being sure that they will be ready in time. I have also realised that it is possible to leave my prescription card with the pharmacy after my appointment and pick the drugs up the next day – another round trip by bike to Addenbrookes, but again it means less hanging around.
Once every three months I have two outpatient chemo appointments: one on the same day as seeing the consultant when I have vincristine, and one later in the week when I have the methotrexate inthrathecal (via lumbar puncture into the spinal fluid) as well as some bone-strengthening medication (1.5 hours on a drip).
Maintenance treatment
Sorry for the long silence. I thought I might discontinue the blog but the maintenance treatment brings with it new challenges which I thought might be of interest. I shall probably only post once or twice a month.
I am getting used to the maintenance regime properly and developing my own regimes for dealing with it. I have bought myself a 7 day pill box so that I can keep track of the different drugs I have to take on different days. I take acyclovir (anti-viral) twice a day and antibiotics twice a day on Saturdays and Sundays. The upside of this is that I haven’t had a cold/cough/sniffle at all even though people at work and my car sharer have been suffering. I also take chemo drugs every day (mercaptopurine) and methotrexate weekly on Wednesdays, except the week before the intrathecal. Then every three months I also have 5 days of steroids. You can see why I need the pill box!
I visit the hospital once a month on a Tuesday to see my consultant, and she usually asks for an extra blood test in between appointments. I have finally developed a system for blood tests. I come down to Addenbrookes on Monday lunchtimes – it’s only a 20 minute cycle ride from work, so I can fit it into my lunchhour . If I arrive at 1:30 I rarely have to wait longer than 10 minutes and then I can be sure that the results will be on the system when I see the consultant the next day. It’s much better than arriving two hours early for an appointment to have the bloods and then not being sure that they will be ready in time. I have also realised that it is possible to leave my prescription card with the pharmacy after my appointment and pick the drugs up the next day – another round trip by bike to Addenbrookes, but again it means less hanging around.
Once every three months I have two outpatient chemo appointments: one on the same day as seeing the consultant when I have vincristine, and one later in the week when I have the methotrexate inthrathecal (via lumbar puncture into the spinal fluid) as well as some bone-strengthening medication (1.5 hours on a drip).
Saturday, 30 July 2016
Saturday 30 July - a year exactly since I was diagnosed
Andrew bought me flowers today to celebrate a year from diagnosis. It seems both not very long and forever since that evening when I went into hospital little expecting to be there for a month! I am so grateful to all the medical and nursing staff for all their care and to all my family and friends for their support over the past year.
A year on I am on a graduated return to work and have even booked to go on holiday. I am enjoying being back at work though I find it mentally pretty tiring. I am up to 3 full days a week now and will be full time from 22 August. Some things are the same and some other things have changed a lot. I find that it is the little things that trip me up, like remembering how to use the Voicemail! The things I worked on a year ago are gradually coming back to me and my colleagues are brilliant - very patient and very pleased to have me back.
The maintenance drugs don't appear to have many side effects. My digestive system seems slowly to be returning to normal and my hair has started to grow again. I still have neuropathy in my feet but it has almost disappeared from my fingers. It'll be interesting to see whether that changes after my next dose of vincristine (which I have once every 12 weeks, next dose 23 August). Fitness is improving. I walked the 5km Race for Life on 17 July and managed it in under 50 minutes. Some of my wonderful colleagues also ran 5km or 10km and between us we raised over £1300 for Bloodwise (research into blood cancers including leukaemia).
So life is good.
A year on I am on a graduated return to work and have even booked to go on holiday. I am enjoying being back at work though I find it mentally pretty tiring. I am up to 3 full days a week now and will be full time from 22 August. Some things are the same and some other things have changed a lot. I find that it is the little things that trip me up, like remembering how to use the Voicemail! The things I worked on a year ago are gradually coming back to me and my colleagues are brilliant - very patient and very pleased to have me back.
The maintenance drugs don't appear to have many side effects. My digestive system seems slowly to be returning to normal and my hair has started to grow again. I still have neuropathy in my feet but it has almost disappeared from my fingers. It'll be interesting to see whether that changes after my next dose of vincristine (which I have once every 12 weeks, next dose 23 August). Fitness is improving. I walked the 5km Race for Life on 17 July and managed it in under 50 minutes. Some of my wonderful colleagues also ran 5km or 10km and between us we raised over £1300 for Bloodwise (research into blood cancers including leukaemia).
So life is good.
Tuesday, 12 July 2016
Monday 11 July - back to work!
Well, I went back to work yesterday, Monday 11 July, after 2 weeks short of a year's absence. It was exciting, but also quite strange, to be back. Some things have changed a lot - a new building, new colleagues - and some things are just the same. I am on a graduated return, starting with 3 half days this week and building up to full-time by the 3rd week in August. This seems a very sensible move while I build up my strength but equally it is quite difficult not to think about work on the days I am not there.
Thank you for all the support and encouragement over the last year. Now I need to get on and work on getting back to normal.
Thank you for all the support and encouragement over the last year. Now I need to get on and work on getting back to normal.
Saturday, 18 June 2016
Saturday 18 June - readjustment is quite hard
So, I have now been without my Hickman line for just over two weeks. The scars and bruises are fading and it is so nice not to have to tape it up in a plastic bag to take a shower. When I went for my consultant appointment on Tuesday I had to give blood in the usual way, from an arm vein - that was a bit of a shock, but that will be the new normal. The appointment went fine, blood results good, consultant pleased, come back in two weeks.
Adjusting to not being under constant care from the hospital has been a lot harder. My life for the past 10 months has revolved around the treatment and at least 3 trips per week to Addenbrookes. It is slightly odd to be able to be at home every day and not rush off to the hospital. I am in discussions over going back to work but right now I am in a type of limbo - not at work, not under constant treatment, not on holiday.
On the plus side there is time to garden, walk to try and get fit again, and get on with the quilt. I am hand quilting it which takes a lot of time, but since I do it on my lap it is also quite restful. Getting fit is important as I have signed up to walk 5km in the Cambridge Race for Life on 17 July. Judging by my recent walks I should manage it in under an hour, which is ok. I've also been out on my bike for a couple of short rides. I was pleased not to have any balance problems but horrified at the lack of strength in my leg muscles!
Adjusting to not being under constant care from the hospital has been a lot harder. My life for the past 10 months has revolved around the treatment and at least 3 trips per week to Addenbrookes. It is slightly odd to be able to be at home every day and not rush off to the hospital. I am in discussions over going back to work but right now I am in a type of limbo - not at work, not under constant treatment, not on holiday.
On the plus side there is time to garden, walk to try and get fit again, and get on with the quilt. I am hand quilting it which takes a lot of time, but since I do it on my lap it is also quite restful. Getting fit is important as I have signed up to walk 5km in the Cambridge Race for Life on 17 July. Judging by my recent walks I should manage it in under an hour, which is ok. I've also been out on my bike for a couple of short rides. I was pleased not to have any balance problems but horrified at the lack of strength in my leg muscles!
Friday, 3 June 2016
Friday 3 June - I no longer have my Hickman line
I now have a very physical reminder that I have got through the intensive chemo. Yesterday I had my Hickman line out, a procedure done by the same specialist nurse who put it in by chance. It was a 15 minute procedure under local anaesthetic. The site is a little sore but seems to be healing well. On the same day I had another lumbar puncture. Amazingly the doctor was early, so was I, and the whole thing was completed within 10 minutes of my stated appointment time. How's that for service?! Then I needed an intravenous drip of bone-strengthening solution (apparently to protect the ball of the hip joint from the effects of all the chemo) and for the first time in over 10 months I had to have a cannula. I felt a bit like a pincushion by the time I got home.
No more hospital appointments till 14 June. Weird.
No more hospital appointments till 14 June. Weird.
Wednesday, 1 June 2016
Wednesday 1 June - I have arrived at maintenance!
After a nerve-racking week when I was neutropenic for the first time since Christmas my blood counts recovered in time for my consultant appointment yesterday and I am now officially into the maintenance phase of my treatment, which lasts for 2 years. Maintenance runs on a 12 week cycle with 1 dose of chemo (Vincristine) and 1 intrathecal at the beginning of the cycle and otherwise all tablets to be taken at home. So I had my first chemo of this phase yesterday, picked up a large bag of drugs and go back tomorrow to have the intrathecal and to have my Hickman line removed. I think having the line out will give me a physical reason to believe that I have made it through the intensive treatments - at the moment it all seems a little unreal.
The most amazing thing is that I will now only have blood tests when I go to the clinic, initially fortnightly and then monthly. So next week I don't have any appointments at the hospital at all. That is going to be very strange. After 10 months of knowing my blood results 2 or 3 times a week only knowing them once a month may be a little nerve-racking to start with.
In other news here is the latest from our garden - the rook and jackdaw gang attacking the fat ball feeder. No wonder we seem to go through so many fat balls. And the noise this lot make is astonishing!
The most amazing thing is that I will now only have blood tests when I go to the clinic, initially fortnightly and then monthly. So next week I don't have any appointments at the hospital at all. That is going to be very strange. After 10 months of knowing my blood results 2 or 3 times a week only knowing them once a month may be a little nerve-racking to start with.
In other news here is the latest from our garden - the rook and jackdaw gang attacking the fat ball feeder. No wonder we seem to go through so many fat balls. And the noise this lot make is astonishing!
Friday, 20 May 2016
Friday 20 May - disappointing blood counts, drains and sewing projects
I have been to the hospital three times this week for blood tests and each time my blood counts have gone down. Thankfully today my platelets and haemoglobin had recovered slightly but my neutrophils are quite low (0.17 for those of you to whom that means anything) so I am back on the neutropenic medication and the GCSF injections. So no Brie or lettuce, no meetings or socialising, but thankfully I feel pretty ok. Back to the hospital next Monday, Wednesday, Friday for more blood tests...
We had an 'interesting' day yesterday to do with drains. At 10:30am there was a ring at the door and our plumber, who was investigating a problem next door, wanted me to move my car so that we could take the lid of the chamber to find out if the pipe was blocked. It was. Ugh. Once we had found the drain rods in the garage (lucky we had some) we were able to deal with that problem. Since it would have become our problem next we were not at all unhappy to help. That reminded us that we had noticed our kitchen sink drain running away slowly so we had to uncover the rodding eye and rod that drain too. Very smelly.
This is the sewing project I have been busy with on and off for the last few months - a quilt for some young friends who got married at the beginning of April. I have now finished sewing the patchwork together and will be having consultancy from a friend on Monday afternoon on the kind of wadding to buy and how to put it together. I have to say I am quite pleased with it.
We had an 'interesting' day yesterday to do with drains. At 10:30am there was a ring at the door and our plumber, who was investigating a problem next door, wanted me to move my car so that we could take the lid of the chamber to find out if the pipe was blocked. It was. Ugh. Once we had found the drain rods in the garage (lucky we had some) we were able to deal with that problem. Since it would have become our problem next we were not at all unhappy to help. That reminded us that we had noticed our kitchen sink drain running away slowly so we had to uncover the rodding eye and rod that drain too. Very smelly.
Friday, 13 May 2016
Friday 13 May 2016 - pictures from home
We now see them under the bird feeder eating the bird food...
In other news I have been to the hospital twice this week for blood tests - counts currently on their way down. I hope they will bounce back again next week.
Monday, 9 May 2016
Monday 9 May 2016 - That's it for the heavy chemo
I had my last chemo session of the consolidation treatment yesterday morning. I will be in Addenbrookes for blood tests two or three times a week for the next few weeks. Then my next consultant's appointment is 31 May and after that I should move into the maintenance phase of treatment and a beginning of a return to normality.
Oddly, this makes me quite anxious. On the one hand I am delighted that the 'heavy chemo' is over and that I am able to think about returning to work and other aspects of the life I was leading before last July. On the other hand it is once again a big change and I suspect it is that which makes me anxious.
I shall probably blog less often now - much less to talk about. Thank you all for following my ramblings - it has been wonderful to know that people are interested and supportive.
Oddly, this makes me quite anxious. On the one hand I am delighted that the 'heavy chemo' is over and that I am able to think about returning to work and other aspects of the life I was leading before last July. On the other hand it is once again a big change and I suspect it is that which makes me anxious.
I shall probably blog less often now - much less to talk about. Thank you all for following my ramblings - it has been wonderful to know that people are interested and supportive.
Monday, 2 May 2016
Monday 2 May - very relaxing weekend
It has been a very relaxing weekend.
These pictures are from Waresley Wood, a short distance from our house accessed from the road between Great Gransden and Waresley. It is a Wildlife Trust Nature Reserve and has the most wonderful show of bluebells at this time of year.
Not only is the sight amazing, a purplish-blue haze that at times is so intense it seems to shimmer, but the smell is intoxicating as well. Added to that, it is always quiet in the woods no matter how many people are there or how full the car park is.
We have had an entertaining time watching the birds in the garden over the weekend. I was lucky enough to catch this sparrowhawk resting on our fence yesterday morning - not another bird in sight at this point of course. Other amusements have been fighting pigeons and the family of jackdaws that think that the fat ball feeder is for them and either try and swing on it or cling upside down to it while frantically trying to peck at the fat balls. I haven't managed to catch them on camera yet. The other sight we saw but couldn't photograph was the young squirrels being encouraged along the top of our hedge and fence by their parents. The young can't quite manage the graceful leaps of the adult squirrels so a great deal of scrabbling or hanging on by one paw and a tail was observed. Priceless.
These pictures are from Waresley Wood, a short distance from our house accessed from the road between Great Gransden and Waresley. It is a Wildlife Trust Nature Reserve and has the most wonderful show of bluebells at this time of year.
Friday, 29 April 2016
Friday 29 April - the calm before the storm (or something like that)
It has only been blood tests this week. Thankfully my results have been good and I haven't needed any more blood transfusions. Neutrophils are sadly still below the Brie level - sigh. I have a clinic appointment on Tuesday and then 6 days straight of chemo.
We had a friend visiting from Toronto for a coupe of days this week. Jocelyn is the daughter of my friend Caroline (who featured in a post in March). She also takes lots of photos, but of architecture rather than birds. She really enjoyed looking around Cambridge. Also it was Andrew's mother's birthday on Tuesday so Andrew cooked a special dinner on Tuesday and I took her to the ballet in Milton Keynes on Thursday, to a matinee of the Northern Ballet's Swan Lake. Great dancing and lovely sets.
We had a friend visiting from Toronto for a coupe of days this week. Jocelyn is the daughter of my friend Caroline (who featured in a post in March). She also takes lots of photos, but of architecture rather than birds. She really enjoyed looking around Cambridge. Also it was Andrew's mother's birthday on Tuesday so Andrew cooked a special dinner on Tuesday and I took her to the ballet in Milton Keynes on Thursday, to a matinee of the Northern Ballet's Swan Lake. Great dancing and lovely sets.
Saturday, 23 April 2016
Saturday 23 April - sorry for long gap between posts
Sorry there has been a long gap. I have been fine. It has mostly been blood tests this week apart from Wednesday when I had two units of blood because my haemoglobin count was below 90. Being hooked up to a drip for 3 hours was rather tedious but Andrew did say I looked pinker the next day! Also my haemoglobin count was up over 100 on Friday, so it worked.
In other news we went into London today to have lunch with no 3 daughter Rebecca and her boyfriend Matt at his new flat in Fulham. He cooked a fabulous lamb shank recipe. Amazingly it only took us two hours to get there and less time to get home.
I have also been gardening this week:
I have put in two rows of new potatoes in the veg plot in the garden at home. I have also acquired two splendid blackcurrant bushes from a fellow allotment holder. Luckily it rained after we planted them so they are looking pretty healthy.
I have also put in maincrop potatoes into my two other children's plots at the allotments. So far the strawberries in the centre plot look as though they are doing pretty well, though I need to net them soon.
I have really enjoyed being out in the garden - grateful to be well enough to do it.
In other news we went into London today to have lunch with no 3 daughter Rebecca and her boyfriend Matt at his new flat in Fulham. He cooked a fabulous lamb shank recipe. Amazingly it only took us two hours to get there and less time to get home.
I have also been gardening this week:
I have really enjoyed being out in the garden - grateful to be well enough to do it.
Friday, 15 April 2016
Friday 15 April - a week of ups and downs
On the up side:
I had the last dose of cytarabine for Consolidation 3.2 and will finish the tablets that go with it on Monday
My neutrophils have remained safely above 0.5 so I have not yet gone neutropenic (with all the dietary restrictions it brings)
My niece came up from London for lunch on Wednesday - it was lovely to see her and hear about what is going on in her life
I bumped into a fellow leukaemia sufferer that I was an in-patient with back last August and he has had a successful bone marrow transplant (with a donor from Germany who was a 10 point match!) and was looking really well
On the down side:
Yesterday my exceptional colleague David MacKay died of his stomach cancer. Read about him here http://www.cambridge-news.co.uk/5-000-raised-memory-Cambridge-engineering/story-29116531-detail/story.html
I had the last dose of cytarabine for Consolidation 3.2 and will finish the tablets that go with it on Monday
My neutrophils have remained safely above 0.5 so I have not yet gone neutropenic (with all the dietary restrictions it brings)
My niece came up from London for lunch on Wednesday - it was lovely to see her and hear about what is going on in her life
I bumped into a fellow leukaemia sufferer that I was an in-patient with back last August and he has had a successful bone marrow transplant (with a donor from Germany who was a 10 point match!) and was looking really well
On the down side:
Yesterday my exceptional colleague David MacKay died of his stomach cancer. Read about him here http://www.cambridge-news.co.uk/5-000-raised-memory-Cambridge-engineering/story-29116531-detail/story.html
Saturday, 9 April 2016
In other news, I have acquired 3 children's plots at our local allotments on the edge of the village. These are just the right size for me to manage without exhausting myself. I have planted my strawberries in the middle one andintend to put maincrop potatoes in the other two. We have a vegetable patch in the garden at home but I always slightly resent filling it up with potatoes when I could grow more interesting things. I have just set my seed for climbing French beans and also patio pot French beans as well as climbing peas (we'll see how successful these are this year - they get one more chance...), parsley and lemongrass. I've also got some pak choi seed which needs to wait until it is warmer. I will plant new potatoes in the garden plot as there is nothing much nicer than new potatoes on your plate that were in the ground half an hour ago.
Thursday, 7 April 2016
Thursday 7 April - after a long day on Tuesday the rest of this week is short chemo
I had a consultant appointment on Tuesday. I got in early so Dr Craig and I were looking at the wedding photos when Andrew arrived! (Because I have to come in at least an hour before my appointment for bloods a friend who works in Cambridge dropped me off just after 8am). Dr Craig was pleased with my progress and has authorised the next lot of chemo - 1 dose of cyclophosphamide on Tuesday and Cytarabine Weds - Sat this week and Tues - Fri next week along with a 14 day course of mercaptopurine. I see her again on 3 May.
So off to the ward at 12 noon for my appointment. However, the blood labs were not playing ball and my full blood count results didn't come back until 2pm. Since the chemo couldn't be authorised until Dr Craig had seen these results I finally escaped from the hospital at 5:50pm. A long day, brightened up by a post-lunch visit from two colleagues.
Yesterday and today by contrast I have been on the ward no more than 45 minutes. The Cytarabin is a very short push. I have been driving myself but have had to be careful to go straight home afterwards as about an hour later I feel like someone has sandbagged me and have to go to bed for an hour.
So off to the ward at 12 noon for my appointment. However, the blood labs were not playing ball and my full blood count results didn't come back until 2pm. Since the chemo couldn't be authorised until Dr Craig had seen these results I finally escaped from the hospital at 5:50pm. A long day, brightened up by a post-lunch visit from two colleagues.
Yesterday and today by contrast I have been on the ward no more than 45 minutes. The Cytarabin is a very short push. I have been driving myself but have had to be careful to go straight home afterwards as about an hour later I feel like someone has sandbagged me and have to go to bed for an hour.
Monday, 4 April 2016
Monday 4 April - had a lovely day on Saturday
It was a lovely day, sunny and warm for the most part. The wedding was very relaxed and friendly but had the most amazing music - they came in to Parry's 'I was Glad', had the Mozart 'Laudate Dominum' sung by Ellie's singing teacher and the choir, and then the choir sang Harris' 'Faire is the Heaven' and Stanford's 'Beati Quorum Via' during the signing of the register.
Me and Rebecca outside the reception venue - Notley Tythe Barn near Long Crendon. It was a lovely venue. Below are the bride and bridesmaids: L to R: Rebecca, Sarah, Ellie, Isabelle (Ellie's twin).
We stayed until after the speeches and then Andre whisked me away - it must have been more tiring than I realised because I fell asleep in the car within minutes and only woke up when we got home!
Thursday, 31 March 2016
Thursday 31 March - neuropathy supplementary
One of the interesting things about the leukaemia treatment is that each of us on the day ward, even if we are on exactly the same treatment regime, reacts in a very individual way to the drugs. So I thought I would tell you a bit more about the neuropathy and what it does to me. I hope you find it interesting.
The drug that causes the neuropathy is vincristine, of which I have had 2g in one dose on days 1,8,15 and 22 of the last month's treatment. So right now as I type the top two joints of my fingers are cold, numb and tingly. The skin on the ends of my fingers is sore and cracked, which makes typing quite slow. I am super-sensitive to heat through my fingers too - can't take the toast out of the toaster because I burn myself. Dexterity is much reduced, so doing buttons or picking up pins is very hard. My feet are cold from the toes to under the ball of the foot (read frozen). Again the skin on the ends of the toes is very sensitive, so stubbing my toe on things is best avoided unless I really want to find myself in orbit. Vincristine also causes joint pain and affects the nerves in the bowel (joy).
Overnight I managed to sleep for about two hours to 12:15. I then needed the bathroom and after that had to get up for a bit. The drug effect on the bowel for me is that it becomes very uncomfortable to lie down because my digestion thinks it is daytime and is working away. So I get up for between 1 and 2 hours until things sort themselves out at which point I can go back to bed. So I was back in bed at 03:15, slept until 04:30 and then woke up. My fingers and toes were cold and throbbing and I had joint pains in my right ankle and right hip and also in my biceps and shoulders which stopped me going back to sleep but I made myself lie there until 05:45 before getting up.
When I first get up I am very stiff-legged and lurch from foot to foot for a few minutes before things get moving. My feet don't bend very well at the moment so I have to hold the banisters going downstairs. Thankfully we have grab rails in the shower and outside the front door from when my mother came to live with us after her stroke. I am finding them quite useful at the moment.
I am going to a wedding in Oxford on Saturday. I may have to wear trainers as they support my stiff feet better than any other shoes. I will also need to take my walking poles - tomorrow's job is to decorate them with navy and green ribbon to match my hat!
I am also suffering from the after-effects of the steroids. They did their job during the treatment in protecting me from the chemo, but now they produce their own side-effects as they work theirway out of my system. They make me retain water so that my ankles, calves and lower thighs swell and get tight, making walking tricky. They also cause skin sensitivity.
This is not meant to be a whinge, just an indication of what the neuropathy means. One of my fellow sufferers has had this sort of neuropathy and had talked about it, so when it came on suddenly on Saturday at least I knew what it was. It is totally manageable - the ward doctor checked me very thoroughly on Tuesday and agreed that I was doing everything I could. They could give me painkillers or other drugs to counteract the effects but a. they don't always work and b. I am temperamentally disinclined to take yet more drugs if I don't need to. Thankfully the doctor agreed with me!
The drug that causes the neuropathy is vincristine, of which I have had 2g in one dose on days 1,8,15 and 22 of the last month's treatment. So right now as I type the top two joints of my fingers are cold, numb and tingly. The skin on the ends of my fingers is sore and cracked, which makes typing quite slow. I am super-sensitive to heat through my fingers too - can't take the toast out of the toaster because I burn myself. Dexterity is much reduced, so doing buttons or picking up pins is very hard. My feet are cold from the toes to under the ball of the foot (read frozen). Again the skin on the ends of the toes is very sensitive, so stubbing my toe on things is best avoided unless I really want to find myself in orbit. Vincristine also causes joint pain and affects the nerves in the bowel (joy).
Overnight I managed to sleep for about two hours to 12:15. I then needed the bathroom and after that had to get up for a bit. The drug effect on the bowel for me is that it becomes very uncomfortable to lie down because my digestion thinks it is daytime and is working away. So I get up for between 1 and 2 hours until things sort themselves out at which point I can go back to bed. So I was back in bed at 03:15, slept until 04:30 and then woke up. My fingers and toes were cold and throbbing and I had joint pains in my right ankle and right hip and also in my biceps and shoulders which stopped me going back to sleep but I made myself lie there until 05:45 before getting up.
When I first get up I am very stiff-legged and lurch from foot to foot for a few minutes before things get moving. My feet don't bend very well at the moment so I have to hold the banisters going downstairs. Thankfully we have grab rails in the shower and outside the front door from when my mother came to live with us after her stroke. I am finding them quite useful at the moment.
I am going to a wedding in Oxford on Saturday. I may have to wear trainers as they support my stiff feet better than any other shoes. I will also need to take my walking poles - tomorrow's job is to decorate them with navy and green ribbon to match my hat!
I am also suffering from the after-effects of the steroids. They did their job during the treatment in protecting me from the chemo, but now they produce their own side-effects as they work theirway out of my system. They make me retain water so that my ankles, calves and lower thighs swell and get tight, making walking tricky. They also cause skin sensitivity.
This is not meant to be a whinge, just an indication of what the neuropathy means. One of my fellow sufferers has had this sort of neuropathy and had talked about it, so when it came on suddenly on Saturday at least I knew what it was. It is totally manageable - the ward doctor checked me very thoroughly on Tuesday and agreed that I was doing everything I could. They could give me painkillers or other drugs to counteract the effects but a. they don't always work and b. I am temperamentally disinclined to take yet more drugs if I don't need to. Thankfully the doctor agreed with me!
Wednesday, 30 March 2016
Wednesday 30 March - neuropathy continues
So I still have the neuropathy - cold and tingly fingers and toes. Apparently the leg swelling is a steroid reaction, as is the skin blotches. I was in the hospital for blood tests yesterday (all good) and the doctor gave me a thorough check over including testing all my reflexes. She is not too worried about these symptoms which should wear off in due course. I am sufficiently unsteady on my feet when walking that I have looked out the walking poles which just give me the necessary balance and confidence.
I have had my clinic appointment brought forward to next week so that I can go straight on to the next part of the chemo, consolidation 3.2. That will have me in the hospital for 5 days in each of the next two weeks.
I hope I don't sound too whiny about all this. It struck me this morning that my overwhelming feeling most days is one of immense gratitude - for all the care I have had from Addenbrookes, for all the support I have had from family and friends, and most of all for still being here to enjoy sunny days like today.
I have had my clinic appointment brought forward to next week so that I can go straight on to the next part of the chemo, consolidation 3.2. That will have me in the hospital for 5 days in each of the next two weeks.
I hope I don't sound too whiny about all this. It struck me this morning that my overwhelming feeling most days is one of immense gratitude - for all the care I have had from Addenbrookes, for all the support I have had from family and friends, and most of all for still being here to enjoy sunny days like today.
Sunday, 27 March 2016
Easter Sunday 27 March 2016 - a new and rather unpleasant side-effect
We have had a lovely weekend with Sarah, Rebecca, her boyfriend Matt and Andrew's mother Gladys with us. Gladys and I went to two coffee mornings in the village yesterday where she won me a beautiful hanging basket in the raffle. While we were doing that the youngsters had a tour of Great Gransden church tower with my friend Phillip the steeple-keeper. They were able to go right to the top of the tower and admire the graffiti (from when poor bored home guard lookouts were stuck up there!) and then visit the bell frame and clock mechanism before having a go at ringing the bells.
Today has involved church, Easter egg hunt and a lot of rather nice food. I made salted honey ice cream from a new cookbook Andrew got - very nice.
Sadly over the last 36 hours I have developed a new side-effect: serious neuropathy. I guess the steroids were protecting me before that. So I now have sore, stiff feet, swelling legs and very sensitive skin. What a pain.
Today has involved church, Easter egg hunt and a lot of rather nice food. I made salted honey ice cream from a new cookbook Andrew got - very nice.
Sadly over the last 36 hours I have developed a new side-effect: serious neuropathy. I guess the steroids were protecting me before that. So I now have sore, stiff feet, swelling legs and very sensitive skin. What a pain.
Tuesday, 22 March 2016
Tuesday 22 March - last chemo of this phase!
So I have had the last dos of vincristine and daunorubicin for this batch. Yay.
I had to wait some time to have the chemo as my neuropathy in hands and feet has worsened since before the weekend and my consultant was consulted on whether to go ahead with the last does. Of course she said yes, as I should be able to manage the side effects. I finally escaped the ward at 4pm having arrived at 10am and had a very pleasant day:
chat with a couple of other long-termers
visit from work colleague with family and work news
lunch
wrote a couple of letters
chilled from the steroid high!
After the hospital Andrew drove me round to the Jobcentre Plus so that I could get my new Fit Note and payslip scanned and added to my account details. It was only yesterday that I discovered that you can do this in person rather than sending them off to the office in Wolverhampton who then send them in the internal mail to Peterborough which takes 9 working days. Why didn't someone tell me sooner?!
Planning more tidying and more pricking out tomorrow.
I had to wait some time to have the chemo as my neuropathy in hands and feet has worsened since before the weekend and my consultant was consulted on whether to go ahead with the last does. Of course she said yes, as I should be able to manage the side effects. I finally escaped the ward at 4pm having arrived at 10am and had a very pleasant day:
chat with a couple of other long-termers
visit from work colleague with family and work news
lunch
wrote a couple of letters
chilled from the steroid high!
After the hospital Andrew drove me round to the Jobcentre Plus so that I could get my new Fit Note and payslip scanned and added to my account details. It was only yesterday that I discovered that you can do this in person rather than sending them off to the office in Wolverhampton who then send them in the internal mail to Peterborough which takes 9 working days. Why didn't someone tell me sooner?!
Planning more tidying and more pricking out tomorrow.
Monday, 21 March 2016
Monday 21 March - pleased that this is the last week of this batch of treatment
Good morning all!
This is the last week of Conslidation 3.1 so I have chemo tomorrow and bloods on Good Friday. Next week it will just be blood tests Tuesday and Friday. I am getting quite tired so it will be good to have a small break. There are all the usual side-effects as well as the steroid impact on my sleep, or lack of it, but it is all manageable.
I quite like being awake in the middle of the night and getting through my chores - the house is starting to look a little tidier! I actually slept much better last night - 2 hours and then a solid 3 hours. Of course I felt groggy when I got up at 6am but you can't have everything.
I had a lovely day yesterday. The village I live in is full of talented and interesting people. One of the many musicians had organised an acoustic session in the pub. So I was able to walk 10 minutes round the corner, drink Adnams Southwold (1/2 pint only) and listen to live music and chat to the folk I know here. You're probably wondering why I am drinking beer - my taste buds have thrown a wobbly and water tastes odd. Beer still tastes like beer - what do you think my consultant will say?!
After the live music a friend and I had a fantastic hour with a small business owner opposite the pub who does hat hire. My friend Hazel's elder twin daughter (my youngest daughter's best friend) is getting married in Oxford on 2 April so we went to sort out our hats. Liz managed to find both of us something wonderful and we had a huge laugh into the bargain!
We are expecting a houseful for Easter so Andrew already has the menu sketched out!
This is the last week of Conslidation 3.1 so I have chemo tomorrow and bloods on Good Friday. Next week it will just be blood tests Tuesday and Friday. I am getting quite tired so it will be good to have a small break. There are all the usual side-effects as well as the steroid impact on my sleep, or lack of it, but it is all manageable.
I quite like being awake in the middle of the night and getting through my chores - the house is starting to look a little tidier! I actually slept much better last night - 2 hours and then a solid 3 hours. Of course I felt groggy when I got up at 6am but you can't have everything.
I had a lovely day yesterday. The village I live in is full of talented and interesting people. One of the many musicians had organised an acoustic session in the pub. So I was able to walk 10 minutes round the corner, drink Adnams Southwold (1/2 pint only) and listen to live music and chat to the folk I know here. You're probably wondering why I am drinking beer - my taste buds have thrown a wobbly and water tastes odd. Beer still tastes like beer - what do you think my consultant will say?!
After the live music a friend and I had a fantastic hour with a small business owner opposite the pub who does hat hire. My friend Hazel's elder twin daughter (my youngest daughter's best friend) is getting married in Oxford on 2 April so we went to sort out our hats. Liz managed to find both of us something wonderful and we had a huge laugh into the bargain!
We are expecting a houseful for Easter so Andrew already has the menu sketched out!
Saturday, 19 March 2016
Saturday 19 March - end of week 3 of this 4 week block of chemo
So, only one more week to go of this treatment round. I'm glad. I am getting quite tired from the lack of sleep and general hyperactivity caused by the steroids. I have chemo on Tuesday next, blood tests and anti-fungal treatment on Good Friday and then the active treatment stops. After that it will be blood tests twice a week waiting for the counts to recover so that I can go on to the next bit.
I am relieved that the steroids have been relatively benign. I admit I was very anxious at the thought of taking them again after my experience as an in-patient last August. However, the ability to get up at 6am and indulge in steroid-fuelled housework obviously works off some of the excess energy! I think it is just easier coping when I am at home and can organise my own time and not worry about disturbing a ward full of people. It has been quite mentally productive as well.
Away from the treatment I have had a lovely couple of days. Yesterday Andrew's mother and I went to the garden centre at Brampton and stocked up on geranium plugs to grow on for the church fete in May. The staff there were fabulous: found the compost I wanted and put it into the car for me, went out to check the deliveries to find my geraniums, ordered a clematis for me. It is so nice when you get really good customer service! Later yesterday a colleague came to visit. It was lovely to see her and to catch up with work, her family etc.
This morning after the hospital I went into the centre of Cambridge to meet a friend and run a few errands. No 3 daughter Rebecca was graduating MA today at the Senate House so I was able to see her through the fence. Actually we totally disgraced ourselves - I climbed on the wall on the outside and she climbed up the inside for a kiss and a picture. She got told off by the Proctor! She will be at her dinner now and is then staying in College overnight with lots of friends from her year.
I am relieved that the steroids have been relatively benign. I admit I was very anxious at the thought of taking them again after my experience as an in-patient last August. However, the ability to get up at 6am and indulge in steroid-fuelled housework obviously works off some of the excess energy! I think it is just easier coping when I am at home and can organise my own time and not worry about disturbing a ward full of people. It has been quite mentally productive as well.
Away from the treatment I have had a lovely couple of days. Yesterday Andrew's mother and I went to the garden centre at Brampton and stocked up on geranium plugs to grow on for the church fete in May. The staff there were fabulous: found the compost I wanted and put it into the car for me, went out to check the deliveries to find my geraniums, ordered a clematis for me. It is so nice when you get really good customer service! Later yesterday a colleague came to visit. It was lovely to see her and to catch up with work, her family etc.
This morning after the hospital I went into the centre of Cambridge to meet a friend and run a few errands. No 3 daughter Rebecca was graduating MA today at the Senate House so I was able to see her through the fence. Actually we totally disgraced ourselves - I climbed on the wall on the outside and she climbed up the inside for a kiss and a picture. She got told off by the Proctor! She will be at her dinner now and is then staying in College overnight with lots of friends from her year.
Wednesday, 16 March 2016
Wednesday 16 March - sorry for delay, tech problems
I had hoped to upload some pictures of my weekend but my technical skills have deserted me under the influence of steroid sleeplessness so you'll just have to put up with text.
Treatment continues to go well. No more allergic reactions and everything on Friday and yesterday went smoothly. I will be having more treatment including another lumbar puncture tomorrow and blood tests on Saturday. The steroids do at least support my blood results which have been really good. Last Friday I had my first piece of pink steak for 8 months. It was fantastic! (Sorry about the food obsession - that is also the steroids!)
I had a visit from my oldest friend on Saturday and Sunday. Caroline and I met on our first day at Oxford High School in September 1969 and have been friends ever since in spite of the fact that her family emigrated to Edmonton, Canada in 1970 and she has lived in the US for over 30 years. I last saw her 6 years ago but it might as well have been yesterday. Over the years we have probably seen each other on average once every 3 years and when Andrew used to go on business to the West Coast he often used to stay with her.
It was good to have the mental boost as the side-effects were pretty revolting over the weekend - now much improved. Caroline's current passion is birding so we went for a couple of walks which were rather like going out with a small child. Every 10 paces she'd stop to look through the binoculars or take photos - to be honest about my level over the weekend.
I seem to be managing the steroids ok at the moment although I don't sleep much, usually about 3 hours/night when I am taking them (which is Tuesday to Friday). However, being at home is much better because I can work off the steroid highs on the housework or tidying, which is useful and satisfying. Also I find even if I don't sleep I can at least stay in bed and rest comfortably until my brain takes off at about 6am.
Worst side-effect this week is the neuropathy which makes my fingers cold and tingly and my feet likewise. It'll pass though.
Treatment continues to go well. No more allergic reactions and everything on Friday and yesterday went smoothly. I will be having more treatment including another lumbar puncture tomorrow and blood tests on Saturday. The steroids do at least support my blood results which have been really good. Last Friday I had my first piece of pink steak for 8 months. It was fantastic! (Sorry about the food obsession - that is also the steroids!)
I had a visit from my oldest friend on Saturday and Sunday. Caroline and I met on our first day at Oxford High School in September 1969 and have been friends ever since in spite of the fact that her family emigrated to Edmonton, Canada in 1970 and she has lived in the US for over 30 years. I last saw her 6 years ago but it might as well have been yesterday. Over the years we have probably seen each other on average once every 3 years and when Andrew used to go on business to the West Coast he often used to stay with her.
It was good to have the mental boost as the side-effects were pretty revolting over the weekend - now much improved. Caroline's current passion is birding so we went for a couple of walks which were rather like going out with a small child. Every 10 paces she'd stop to look through the binoculars or take photos - to be honest about my level over the weekend.
I seem to be managing the steroids ok at the moment although I don't sleep much, usually about 3 hours/night when I am taking them (which is Tuesday to Friday). However, being at home is much better because I can work off the steroid highs on the housework or tidying, which is useful and satisfying. Also I find even if I don't sleep I can at least stay in bed and rest comfortably until my brain takes off at about 6am.
Worst side-effect this week is the neuropathy which makes my fingers cold and tingly and my feet likewise. It'll pass though.
Thursday, 10 March 2016
Thursday 10 March - Andrew's bake fest and telly have kept the steroids under control
So after being more than a little hyper earlier in the day I have managed to calm myself down with a walk before lunch, lunch, and an afternoon on the sofa watching 'Back in time for the weekend' http://www.bbc.co.uk/programmes/b06zyt4z - I have now seen the 50s, 60s, 70s and 80s and can't wait to watch the 90s.
While I was chilling, Andrew had a bake fest in the kitchen. He has made bread for my sandwich tomorrow (he makes nearly all our bread now).
He has made two batches of Parmesan biscuits so that I can take some into the ward tomorrow.
And he has made this yummy looking pear tart for pudding - Parmesan short-crust pastry, thin Bakewell tart filling (sponge made with ground almonds and a little cream rather than flour), sliced pears and a crabappple jelly glaze. I'll let you know how it tastes!
He has made two batches of Parmesan biscuits so that I can take some into the ward tomorrow.
Thursday 10 March - steroids starting to kick in...
I have finally been dragged kicking and screaming into the 21st century and have acquired a smartphone on which I have learnt to do _some_ things, courtesy of Andrew and the girls.
Saturday, 5 March 2016
Saturday 5 March - end of week 1 of consolidation 3.1
I am currently doing consolidation 3.1 - a repeat of the chemo I had when I was first diagnosed in August last year. It's not too arduous - week 1 was chemo on days 1 and 4, lumbar puncture ( totally painless!) on day 3 and a return today (day 5) for a different anti-fungal drug to the one that turned me into a radioactive tomato - no problem with the new drug. Weeks 2 and 4 should only be 2 or possibly 3 visits to the hospital - chemo on days 8 and 22 and blood tests later that in the weeks. Week 3 will also have another lumbar puncture. I am also back on the rocket fuel steroids but so far haven't felt especially loony - I'm sure the staff and my nearest and dearest will let me know if they think I am going off the rails!
So this week has been quite benign. I still feel pretty good though I am getting more tired and my temperature control is totally up the creek. I drove myself to the hospital today and have done a few small jobs around the house, but am trying to be sensible so that I don't overdo it.
It's been a weird week weatherwise here - beautiful sunshine alternating with snow and sleet. I do have some photos of both but am having the usual technical trouble uploading stuff. When not in hospital I have been sewing, reading and catching up with friends - lovely.
So this week has been quite benign. I still feel pretty good though I am getting more tired and my temperature control is totally up the creek. I drove myself to the hospital today and have done a few small jobs around the house, but am trying to be sensible so that I don't overdo it.
It's been a weird week weatherwise here - beautiful sunshine alternating with snow and sleet. I do have some photos of both but am having the usual technical trouble uploading stuff. When not in hospital I have been sewing, reading and catching up with friends - lovely.
Tuesday, 1 March 2016
Tuesday 1 March - I've been described as looking like either a radioactive tomato or a Belisha beacon
Today I had a reaction to one of the drugs they gave me, an anti-fungal called ambisome. It was almost instantaneous - the nurse worked out that I can't have had more than 1ml before I reacted! I felt hot, wheezy, my throat started to feel tight and I had an achey back and shoulders. The reaction from the staff was swift - turn off drug, inject hydrocortisone and piriton into the line, dose with paracetamol, visit from doctor...Once they were sure that the reaction was under control, the two nurses who were dealing with me laughed. Apparently I had gone so red in the face that one thought I looked like a radioactive tomato and the other like a Belisha beacon!
In other news, I had a very satisfactory clinic appointment today and have started the next round of chemo which lasts 4 weeks. The consultant was pleased with my progress - always good.The chemo drugs were administered safely. I start the steroids tomorrow.
It's a shame that you don't get to enjoy the feeling good bit for longer before the next round of treatment starts. To round off my two weeks of feeling perky I drove myself to Colchester last Friday to see no 1 daughter who was in residence at the Firstsite art gallery and had a lovely weekend, including going to church for the first time in ages (_and_ we sang 'Guide me o thou great redeemer' my all-time favourite hymn.). However, the two weeks of feeling really good that I have had have firstly left me physically in a really good place to start the next round of chemo and secondly have left me mentally in a good place. When things get tough (as I'm sure they will) I can look back on these two weeks and know that I can feel like that again.
In other news, I had a very satisfactory clinic appointment today and have started the next round of chemo which lasts 4 weeks. The consultant was pleased with my progress - always good.The chemo drugs were administered safely. I start the steroids tomorrow.
It's a shame that you don't get to enjoy the feeling good bit for longer before the next round of treatment starts. To round off my two weeks of feeling perky I drove myself to Colchester last Friday to see no 1 daughter who was in residence at the Firstsite art gallery and had a lovely weekend, including going to church for the first time in ages (_and_ we sang 'Guide me o thou great redeemer' my all-time favourite hymn.). However, the two weeks of feeling really good that I have had have firstly left me physically in a really good place to start the next round of chemo and secondly have left me mentally in a good place. When things get tough (as I'm sure they will) I can look back on these two weeks and know that I can feel like that again.
Wednesday, 24 February 2016
Wednesday 24 February - I've been to Birmingham today!
I am still feeling really good so today Andrew and I went to visit no 2 daughter, Sarah, in her new abode in Wylde Green between Birmingham and Sutton Coldfield. She has a very nice room in a semi-detached house on a suburban street. The house is very pleasant and she has a very nice landlady. We took the books and DVDs that she couldn't fit in when she moved in January and took her out to lunch. It was a lovely sunny day so the journey there and back was also really enjoyable. It's good to be able to imagine Sarah in her new habitat!
Since Friday when I last posted we've been quite busy - friends to dinner on Saturday, more marmalade making, finishing off the hedge cutting (no accidents this time - I called Andrew to stand on the foot of the ladder when I started to feel unsafe on the slope!) and more sewing. Blood results on Monday were good and I go back tomorrow for blood tests which I hope will be equally good, and quick.
Since Friday when I last posted we've been quite busy - friends to dinner on Saturday, more marmalade making, finishing off the hedge cutting (no accidents this time - I called Andrew to stand on the foot of the ladder when I started to feel unsafe on the slope!) and more sewing. Blood results on Monday were good and I go back tomorrow for blood tests which I hope will be equally good, and quick.
Friday, 19 February 2016
Friday 19 February - back from the hospital by 10:45!
I can hardly believe it. I arrived at the hospital just after 8:00 and was free to go at 09:45! Bloods all good, liver scan fine, rash subsiding (more on that below). And I only have to go twice for bloods next week - I've gone for early appointments in the hope of repeating today's feat. As I am driving myself at the moment there is no problem with lifts.
So the rest of the day - wonderfully sunny - is mine. I'm currently making marmalade and waiting for my new phone to arrive - finally getting into the 21st century with a smartphone. Will I be able to understand how to use it I wonder?
So the rash...well actually the slightly swollen right ankle and sore Achilles tendon and calf muscle that goes with it: it occurred to me this morning that of course while I was cutting the hedge earlier in the week I had slightly lost my balance coming down the stepladder. The only way to retrieve the situation was to step across to the edging stones on the far side of the pond. Unfortunately the stone has been undermined by the ants nests with the result that it and my foot slipped into the pond. Of course, I must have strained my Achilles tendon and calf when that happened although I didn't notice at the time. I carefully didn't give the doctor this story!
So the rest of the day - wonderfully sunny - is mine. I'm currently making marmalade and waiting for my new phone to arrive - finally getting into the 21st century with a smartphone. Will I be able to understand how to use it I wonder?
So the rash...well actually the slightly swollen right ankle and sore Achilles tendon and calf muscle that goes with it: it occurred to me this morning that of course while I was cutting the hedge earlier in the week I had slightly lost my balance coming down the stepladder. The only way to retrieve the situation was to step across to the edging stones on the far side of the pond. Unfortunately the stone has been undermined by the ants nests with the result that it and my foot slipped into the pond. Of course, I must have strained my Achilles tendon and calf when that happened although I didn't notice at the time. I carefully didn't give the doctor this story!
Thursday, 18 February 2016
Thursday 18 February - I've been out to lunch!
Sorry for the long gap since the last post...
I've been feeling pretty perky this week. I think it may have something to do with the half-dose of the chemo that the consultant decided on due to my puffy ankles. I feel really well and energetic - have been making marmalade and continuing to cut the beech hedge - 2/3 done now - and driving myself to the hospital. My blood results have been good too.
I had my liver scan on Monday. I got in early and was finished by 19:05 when my appointment was not until 19:00 - can't be bad. I haven't had the results yet, but the fact that no-one has been in touch leads me to hope everything was normal. On Wednesday I had an early appointment at 08:00 and was hoping to be home by 11:00, but the blood lab lost my sample so it had to be done again and I needed to see the doctor about a strange rash on my leg and then wait for the pharmacy to disgorge my tablets, so in fact I didn't get home until 13:00. Sigh! I am now taking antibiotics 4 times a day for the next 7 days - huge great 500mg things they are too. However, rash now less angry.
Today's big excitement was a trip out to Ikea in Milton Keynes for lunch and a little bit of retail therapy. This may not sound exciting to you, but this is the furthest I have been for the last 7 months and the first time I have had lunch out in the last 7 months, so I thought it was pretty exciting!
I've been feeling pretty perky this week. I think it may have something to do with the half-dose of the chemo that the consultant decided on due to my puffy ankles. I feel really well and energetic - have been making marmalade and continuing to cut the beech hedge - 2/3 done now - and driving myself to the hospital. My blood results have been good too.
I had my liver scan on Monday. I got in early and was finished by 19:05 when my appointment was not until 19:00 - can't be bad. I haven't had the results yet, but the fact that no-one has been in touch leads me to hope everything was normal. On Wednesday I had an early appointment at 08:00 and was hoping to be home by 11:00, but the blood lab lost my sample so it had to be done again and I needed to see the doctor about a strange rash on my leg and then wait for the pharmacy to disgorge my tablets, so in fact I didn't get home until 13:00. Sigh! I am now taking antibiotics 4 times a day for the next 7 days - huge great 500mg things they are too. However, rash now less angry.
Today's big excitement was a trip out to Ikea in Milton Keynes for lunch and a little bit of retail therapy. This may not sound exciting to you, but this is the furthest I have been for the last 7 months and the first time I have had lunch out in the last 7 months, so I thought it was pretty exciting!
Saturday, 13 February 2016
Saturday 13 February - gosh, Saturday already
It's been a relatively hospital-free week, just blood tests on Thursday which were all ok. I have to go again for blood tests on Monday and for a liver scan.
Lovely time yesterday and today with my cousin here and also an old friend of ours. We had a very noisy and cheerful evening (probably helped by the excellent bottle of port - I only had a small glass!) and then a pleasant morning with my cousin before I took her back to the train in Cambridge after lunch. She is a splendid house guest - just mucks in and always brings something to do in any down time.
I have another funny story about something that got lost...Andrew has a favourite small wooden spoon which he has had for over 35 years and which is particularly good for making sauces as the tip has worn away slightly giving a flatter end. On Thursday we had cauliflower in cheese sauce, he wanted to use the spoon and couldn't find it. Well, we turned out the wooden spoon pot 3 times, the cutlery drawer twice, looked in the dishwasher...no spoon. On Friday morning while we were drinking our tea Andrew said to me quite out of the blue: 'When did I make the hummous?' There followed a 15 minute conversation about what we had had for every lunch and dinner for the last week, trying to work out when we had last used the spoon (the Thursday before if you want to know). A little later I was in the kitchen when Andrew came downstairs, put something in the dishwasher and turned to me in triumph brandishing the missing spoon! It was on the bottom of the dishwasher and had been obscured by the dishes the night before. Relief all round...
Lovely time yesterday and today with my cousin here and also an old friend of ours. We had a very noisy and cheerful evening (probably helped by the excellent bottle of port - I only had a small glass!) and then a pleasant morning with my cousin before I took her back to the train in Cambridge after lunch. She is a splendid house guest - just mucks in and always brings something to do in any down time.
I have another funny story about something that got lost...Andrew has a favourite small wooden spoon which he has had for over 35 years and which is particularly good for making sauces as the tip has worn away slightly giving a flatter end. On Thursday we had cauliflower in cheese sauce, he wanted to use the spoon and couldn't find it. Well, we turned out the wooden spoon pot 3 times, the cutlery drawer twice, looked in the dishwasher...no spoon. On Friday morning while we were drinking our tea Andrew said to me quite out of the blue: 'When did I make the hummous?' There followed a 15 minute conversation about what we had had for every lunch and dinner for the last week, trying to work out when we had last used the spoon (the Thursday before if you want to know). A little later I was in the kitchen when Andrew came downstairs, put something in the dishwasher and turned to me in triumph brandishing the missing spoon! It was on the bottom of the dishwasher and had been obscured by the dishes the night before. Relief all round...
Tuesday, 9 February 2016
Tuesday 9 February - blood...
This lot of chemotherapy finished on Sunday. Sunday on E10 is very peaceful - there weren't many of us there and there was time for a chat and a laugh with the staff. I seem to have withstood this round of chemo reasonably well so far, though I know that I may feel more tired in the 7-10 days to come.
Yesterday we had a visit from no 1 daughter. It was lovely to see her - she is very faithful about popping up to see us when she has a free day - yesterday was her last free day until the end of March! She did my hovering too (can't be bad).
Today I was in Addenbrookes for a blood transfusion as the chemo has knocked my haemoglobin levels. Two units of blood takes 3 hours, so I arrived just before 8:30 and escaped at 12:30 - thanks to the two friends for lifts. A colleague from work popped in to see me while I was tethered to the pump, so that helped to pass the time. I'll be back at Addenbrookes on Thursday for more blood tests.
Funny story from the weekend: I made a cup of tea for Andrew, his mother and me in the afternoon and couldn't find my current favourite monster mug. We all looked for it in all the usual places I leave things - no mug. So I had to use a different one. Later on when Andrew was cooking dinner he opened the microwave to put the vegetables in and ... there was my mug full of cold tea! Brain, what brain?!
Yesterday we had a visit from no 1 daughter. It was lovely to see her - she is very faithful about popping up to see us when she has a free day - yesterday was her last free day until the end of March! She did my hovering too (can't be bad).
Today I was in Addenbrookes for a blood transfusion as the chemo has knocked my haemoglobin levels. Two units of blood takes 3 hours, so I arrived just before 8:30 and escaped at 12:30 - thanks to the two friends for lifts. A colleague from work popped in to see me while I was tethered to the pump, so that helped to pass the time. I'll be back at Addenbrookes on Thursday for more blood tests.
Funny story from the weekend: I made a cup of tea for Andrew, his mother and me in the afternoon and couldn't find my current favourite monster mug. We all looked for it in all the usual places I leave things - no mug. So I had to use a different one. Later on when Andrew was cooking dinner he opened the microwave to put the vegetables in and ... there was my mug full of cold tea! Brain, what brain?!
Saturday, 6 February 2016
Saturday 6 February - it's the weekend...more chemo
The days certainly whizz by when you are going to the hospital every day as I am this week. So far 3 lots of chemo and an intrathecal yesterday. Chemo today and tomorrow to follow. Earlier in the week I had visits from lovely colleagues to distract me, but yesterday was a long day because I managed to arrive an hour and a half early for my intrathecal (mix up over appointment times) and then it wasn't entirely straightforward so I spent from 2 - 7pm in the hospital. Shorter visit today I hope!
Andrew's contribution to my treatment is to cook wonderful food as you know (oh, and uncomplainingly come to fetch me from Addenbrookes). He's been experimenting with some new recipes this week from Nigel Slater's latest book. We had fabulous dill, parmesan and bacon pasta on Thursday evening. Earlier in the week he decided to try the smoked mackerel, beetroot and horseradish fishcakes. On Wednesday they were absolutely sublime, served on a bed of pak choi with yoghourt and home-pickled vegetables (carrot, bamboo shoots and ginger) as accompaniments. This was however the second attempt. Things didn't go quite so smoothly on Tuesday. The fishcakes are potato based and the recipe doesn't use an egg to bind them. Sadly due to this and also overcrowding the pan we ended up with the crust looking like Teflon and the insides dissolving into hash. For one horrible moment (since I was really hungry) I thought Andrew was going to bin the lot, but he decided to rescue the insides which were delicious if lacking somewhat in structural integrity! The next day, determined to crack this one, he added an egg and cooked them in small batches in a lighter pan - result!
Andrew's contribution to my treatment is to cook wonderful food as you know (oh, and uncomplainingly come to fetch me from Addenbrookes). He's been experimenting with some new recipes this week from Nigel Slater's latest book. We had fabulous dill, parmesan and bacon pasta on Thursday evening. Earlier in the week he decided to try the smoked mackerel, beetroot and horseradish fishcakes. On Wednesday they were absolutely sublime, served on a bed of pak choi with yoghourt and home-pickled vegetables (carrot, bamboo shoots and ginger) as accompaniments. This was however the second attempt. Things didn't go quite so smoothly on Tuesday. The fishcakes are potato based and the recipe doesn't use an egg to bind them. Sadly due to this and also overcrowding the pan we ended up with the crust looking like Teflon and the insides dissolving into hash. For one horrible moment (since I was really hungry) I thought Andrew was going to bin the lot, but he decided to rescue the insides which were delicious if lacking somewhat in structural integrity! The next day, determined to crack this one, he added an egg and cooked them in small batches in a lighter pan - result!
Wednesday, 3 February 2016
Wednesday 3 February - not a domestic goddess!
Boring stuff first. Saw the consultant yesterday - she was pleased with progress so next lot of chemo started yesterday afternoon. It runs every day until Sunday. It's the same as January's so I will feel ok while I'm having it but probably pretty tired by about a week to 10 days afterwards and then pick up gradually (I hope I won't catch another cold). I have my next consultant appointment on 1 March after which we should move on to Consolidation 3 which includes rather a lot of the steroid that made me fairly manic last August - you have been warned.
I thought you might be amused by this tale of domestic non-goddess status...
Last week I decided to change the sheet on our bed, a 5 minute job in theory. So I stripped the bed and got a clean sheet out of the airing cupboard - it didn't fit. I remembered then that of course our bed is king-size but we also have two small doubles in Eleanor and Rebecca's rooms so this must have been one of their sheets. Back to the airing cupboard...next sheet doesn't fit either, same problem. Back again to the airing cupboard...the last sheet doesn't fit either, same problem. After some head-scratching and checking of the washing basket I work out that I must have put our clean sheet on one of the girls' beds. So I take the sheet off Rebecca's bed - wrong size. By this time I am wishing I had never decided to change the wretched sheet! So I return the sheet to Rebecca's bed and take the sheet off Eleanor's bed - huzzah, it fits! So I make our bed, make up Eleanor's bed with one of the smaller sheets and return the two other sheets (neatly folded of course) to the airing cupboard. I need a rest after this!
On Sunday I did the sensible thing and sewed a piece of spotty ribbon on to the labels on the sheets that fit our bed so that this does not happen again.
I will never be a domestic goddess!
I thought you might be amused by this tale of domestic non-goddess status...
Last week I decided to change the sheet on our bed, a 5 minute job in theory. So I stripped the bed and got a clean sheet out of the airing cupboard - it didn't fit. I remembered then that of course our bed is king-size but we also have two small doubles in Eleanor and Rebecca's rooms so this must have been one of their sheets. Back to the airing cupboard...next sheet doesn't fit either, same problem. Back again to the airing cupboard...the last sheet doesn't fit either, same problem. After some head-scratching and checking of the washing basket I work out that I must have put our clean sheet on one of the girls' beds. So I take the sheet off Rebecca's bed - wrong size. By this time I am wishing I had never decided to change the wretched sheet! So I return the sheet to Rebecca's bed and take the sheet off Eleanor's bed - huzzah, it fits! So I make our bed, make up Eleanor's bed with one of the smaller sheets and return the two other sheets (neatly folded of course) to the airing cupboard. I need a rest after this!
On Sunday I did the sensible thing and sewed a piece of spotty ribbon on to the labels on the sheets that fit our bed so that this does not happen again.
I will never be a domestic goddess!
Monday, 1 February 2016
Monday 1 February - it's been a lovely few days off
I was at the hospital on Friday for blood tests (all fine) and have since then had a few days off! It's been lovely. We've had time to see family, have coffee with friends in the village and have other friends to lunch - and I've felt well enough to do it. Because my neutrophils are good at the moment I have also been eating all those things which will doubtless be on the forbidden list in a few days time as the chemo knocks the neutrophils down - salami, stuffed olives, Brie, blue Stilton, grapes... Unfortunately I am of course paying the price for my overindulgence with the occasional stomach ache, but it's worth it!
Andrew and I have also been making chutney, to use up the last of our own apples, and marmalade, because it's that time of year. The marmalade turned out ok if a little runny - it doesn't do to tilt the bread/toast too far off the horizontal!
So it's back to clinic tomorrow morning and then chemo starts in the afternoon, every day until Sunday this week. Onwards and upwards!
Andrew and I have also been making chutney, to use up the last of our own apples, and marmalade, because it's that time of year. The marmalade turned out ok if a little runny - it doesn't do to tilt the bread/toast too far off the horizontal!
So it's back to clinic tomorrow morning and then chemo starts in the afternoon, every day until Sunday this week. Onwards and upwards!
Wednesday, 27 January 2016
Wednesday 27 January - feeling better, only at hospital for blood tests
Thanks for all the kind wishes - you'll all be pleased to know that I am feeling MUCH better, if not totally 100% yet. I had a lovely restful day at home yesterday and also a restful morning before heading into Addenbrookes for blood tests. The blood lab was apparently in turmoil today so we waited longer than usual for the results to appear on the ward, but that gave me a chance to have a happy hour's snooze.
My results were all good so I was released with no further treatment - back on Friday for the next lot.
One of the lovely things about yesterday was getting around to arranging a few social engagements: a friend coming for coffee and a chat tomorrow, relatives here for lunch on Saturday, a coffee invitation from other friends on Sunday afternoon and friends coming to lunch on Monday. Although it is important not to overdo things (and just at the moment I think large gatherings are probably not a good move in case I pick up yet another bug) it is very easy for me and more importantly for Andrew to miss out on sufficient social contact. So thanks to those who are coming and who have invited us!
My results were all good so I was released with no further treatment - back on Friday for the next lot.
One of the lovely things about yesterday was getting around to arranging a few social engagements: a friend coming for coffee and a chat tomorrow, relatives here for lunch on Saturday, a coffee invitation from other friends on Sunday afternoon and friends coming to lunch on Monday. Although it is important not to overdo things (and just at the moment I think large gatherings are probably not a good move in case I pick up yet another bug) it is very easy for me and more importantly for Andrew to miss out on sufficient social contact. So thanks to those who are coming and who have invited us!
Monday, 25 January 2016
Monday 25 January - well, where did that week go?
Sadly I have spent since Wednesday last week (20 Jan) incarcerated in a side room on ward D9 in Addenbrookes while my temperature yo-yo'd up and down between 38.5 and 35.7. They have done loads of tests, taken innumerable blood samples but the only thing they could find was the rhino virus (common cold). Anyway my temperature has been stable for over 24 hours now so they have let me out.
Actually for the first 4 days I was quite happy to be left alone to gaze out of the window at the cranes, sleep and re-read all of Harry Potter, it's only today that I felt the first twitches of boredom.
Thanks very much to the excellent staff on D9 who looked after me.
Actually for the first 4 days I was quite happy to be left alone to gaze out of the window at the cranes, sleep and re-read all of Harry Potter, it's only today that I felt the first twitches of boredom.
Thanks very much to the excellent staff on D9 who looked after me.
Monday, 18 January 2016
Monday 18 January 2016 - a tale of two rashes
I went to the hospital this morning for my blood tests. After the nurse had taken my blood I mentioned that I had a small rash and wondered if it was caused by low platelet count (can cause bruising and petechia - little red dots on the skin). The doctor came and had a look at it and after consulting with a dermatology colleague decided it was a side-effect of the last lot of chemo and prescribed some steroid cream. Job done I thought.
When my blood results came back the doctor decided to order some platelets for me because my anti-thrombin levels were low (she also gave me Kybernin). About 10 minutes after the platelet infusion started I had an itchy shoulder and then an itchy stomach. I alerted the staff, they stopped the platelets and gave me intravenous hydrocortisone and piriton. By then, 10 minutes after the itching had started, the rash was spreading really quickly - stomach, back, forearms, thighs and _so_ itchy that I had to sit on my hands to stop myself scratching. It is apparently a form of hives that you can get as a reaction to blood products - I shall always be very sympathetic in future to people who have hives!
The rash took about 2 hours to go away during which time I had had a couple of piriton-induced sleeps! And, having arrived at hospital at 09:30 I finally escaped at just before 5pm. So much for Monday. I thought it was ironic that I had been concerned about the small rash (which is still present) and then got a reaction that produced a rash 10 times as bad!
When my blood results came back the doctor decided to order some platelets for me because my anti-thrombin levels were low (she also gave me Kybernin). About 10 minutes after the platelet infusion started I had an itchy shoulder and then an itchy stomach. I alerted the staff, they stopped the platelets and gave me intravenous hydrocortisone and piriton. By then, 10 minutes after the itching had started, the rash was spreading really quickly - stomach, back, forearms, thighs and _so_ itchy that I had to sit on my hands to stop myself scratching. It is apparently a form of hives that you can get as a reaction to blood products - I shall always be very sympathetic in future to people who have hives!
The rash took about 2 hours to go away during which time I had had a couple of piriton-induced sleeps! And, having arrived at hospital at 09:30 I finally escaped at just before 5pm. So much for Monday. I thought it was ironic that I had been concerned about the small rash (which is still present) and then got a reaction that produced a rash 10 times as bad!
Thursday, 14 January 2016
Thursday 14 January - hair now tidy
Much to Andrew's pleasure I went to visit my lovely hairdresser Owen this afternoon. He has tidied up my hair (which was honestly starting to look as though someone had dropped a pink toupee on top of my head) which is now quite a lot shorter but decidedly less pink. Owen says it has hardly grown at all since August. However, he reassures me that it should recover in due course. I'll get Andrew to take a picture so that you can all see the improvement.
I was obviously far too keen in my post on Monday. For the past two days I have been feeling relentlessly queasy and today in particular I have begun to feel the cold even when the temperature is quite reasonable. One of the helpful nurses on E10 explained that the nadir (low point I believe) usually comes 7-10 days after treatment, so I have probably got another few days of this before I start to feel better.
However, since my neutrophil count was over 7 yesterday I didn't let the queasiness stand in my way and enjoyed a piece of the Christmas stilton that I have been looking forward to since December 20th. It was a piece of Cropwell Bishop stilton for the cheese lovers among you and it was delicious! There is a small piece left that I put in the freezer which we might get out for the weekend depending on my blood results tomorrow.
I was obviously far too keen in my post on Monday. For the past two days I have been feeling relentlessly queasy and today in particular I have begun to feel the cold even when the temperature is quite reasonable. One of the helpful nurses on E10 explained that the nadir (low point I believe) usually comes 7-10 days after treatment, so I have probably got another few days of this before I start to feel better.
However, since my neutrophil count was over 7 yesterday I didn't let the queasiness stand in my way and enjoyed a piece of the Christmas stilton that I have been looking forward to since December 20th. It was a piece of Cropwell Bishop stilton for the cheese lovers among you and it was delicious! There is a small piece left that I put in the freezer which we might get out for the weekend depending on my blood results tomorrow.
Monday, 11 January 2016
Monday 11 January - another lot of chemo over
Right - that has seen off Consolidation 1, 6 days straight of chemo including the intrathecal last Wednesday. Unless the side effects are about to make themselves known afterwards, the two drugs I have had this time don't seem to have affected me too badly. I am just weary. I now get 3 weeks off while we wait for all my blood counts to recover before the next lot, which is a repeat of this one.
Of course 'off' doesn't mean no hospital, it just means only visits for blood tests 3 times a week. At least at the moment I am fit enough to drive myself which makes life a lot easier.
So it is time to pay a little attention to things at home - making up the beds again after Christmas, possibly even doing a little housework and getting on with one of my larger sewing projects. Having completed the two little jobs I had to do, I have sorted out the materials and can make a start on Project 1.
Oh, the other essential activity is to have a haircut! Since I still have surprising quantities of hair (though it is barely growing and has gone rather thin) and it is still quite pink, I need to go and see my lovely hairdresser for a tidy-up.
Of course 'off' doesn't mean no hospital, it just means only visits for blood tests 3 times a week. At least at the moment I am fit enough to drive myself which makes life a lot easier.
So it is time to pay a little attention to things at home - making up the beds again after Christmas, possibly even doing a little housework and getting on with one of my larger sewing projects. Having completed the two little jobs I had to do, I have sorted out the materials and can make a start on Project 1.
Oh, the other essential activity is to have a haircut! Since I still have surprising quantities of hair (though it is barely growing and has gone rather thin) and it is still quite pink, I need to go and see my lovely hairdresser for a tidy-up.
Wednesday, 6 January 2016
Wednesday 6 January - a painfree intrathecal (chemo via lumbar puncture!
A fairly regular part of my chemo regime is intrathecal methotrexate - this is administered via lumbar puncture directly into the spinal fluid intended to protect me from the leukaemia crossing the blood/brain barrier. Before they put the chemo in they take out 6 or 7 drops of spinal fluid to test for the presence of 'bad' cells.
Intrathecals can be painful, especially if the needle catches a nerve, which has happened a couple of times (to be fair, the doctor is acting on feel alone). The last intrathecal I had was a bit of a nightmare. One doctor had 5 attempts at getting the needle in and kept hitting the bone and so called a colleague to get the needle in (first time). My back is still sore from that and that was the end of October.
So I was not really looking forward to today's intrathecal. But it was painfree! Gold star to the doctor who did it. The site is a bit sore now the local anaesthetic has worn off, but that will soon wear off.
Yesterday I saw the consultant - still pleased with my progress - and started Consolidation 1. This is 5 days of chemo and an intrathecal starting yesterday and running to Sunday. So far no ill effects other than the usual 'sandbagged' feeling that the Cytarabin gives me - I slept for 40 minutes on the ward yesterday which they were giving me the other drug. I just couldn't keep my eyes open!
In other news, we have sadly now taken down and packed away all the Christmas decorations, lights etc. I hate doing this, but I also look forward to seeing all these favourite things again at the other end of the year.
Intrathecals can be painful, especially if the needle catches a nerve, which has happened a couple of times (to be fair, the doctor is acting on feel alone). The last intrathecal I had was a bit of a nightmare. One doctor had 5 attempts at getting the needle in and kept hitting the bone and so called a colleague to get the needle in (first time). My back is still sore from that and that was the end of October.
So I was not really looking forward to today's intrathecal. But it was painfree! Gold star to the doctor who did it. The site is a bit sore now the local anaesthetic has worn off, but that will soon wear off.
Yesterday I saw the consultant - still pleased with my progress - and started Consolidation 1. This is 5 days of chemo and an intrathecal starting yesterday and running to Sunday. So far no ill effects other than the usual 'sandbagged' feeling that the Cytarabin gives me - I slept for 40 minutes on the ward yesterday which they were giving me the other drug. I just couldn't keep my eyes open!
In other news, we have sadly now taken down and packed away all the Christmas decorations, lights etc. I hate doing this, but I also look forward to seeing all these favourite things again at the other end of the year.
Monday, 4 January 2016
Monday 4 January - sleep...
I don't sleep very well since being diagnosed with leukaemia. Actually the truth is more that I don't sleep for very long. I fall asleep quite easily, but wake up frequently (since the two December treatments with methotrexate usually to use the bathroom) and so now rarely sleep for longer than 3.5 hours at a stretch and often only 2 - 3 hours. I also frequently wake at around 6am and lie awake wondering whether I should get up, since I can't easily fall asleep again in the morning much as I would love to.
The power of sleep is much underestimated. When I came home from hospital just before Christmas I was exhausted. But after a few days' even patchy sleep in my own bed I felt much more human and able to cope with the other residual side-effects.
I realise now that I didn't appreciate enough the ability to sleep for a rejuvenating 6 or 7 hours while I could do it. So, if you are still able to enjoy a long period of sleep, enjoy it!
I'm wondering what the side-effects of the new drug I am having tomorrow will be...
The power of sleep is much underestimated. When I came home from hospital just before Christmas I was exhausted. But after a few days' even patchy sleep in my own bed I felt much more human and able to cope with the other residual side-effects.
I realise now that I didn't appreciate enough the ability to sleep for a rejuvenating 6 or 7 hours while I could do it. So, if you are still able to enjoy a long period of sleep, enjoy it!
I'm wondering what the side-effects of the new drug I am having tomorrow will be...
Saturday, 2 January 2016
Saturday 2 January - Happy New Year!
Happy New Year to you all and best wishes for 2016!
We had a very quiet New Year's Eve with two of the party retiring to bed at 10:30pm and the other 3 of us lasting until just after midnight. A real pleasure on New Year's Day was listening to the bells being rung in the church - not too early of course. Here in the village they ring on the morning rather than at midnight on New Year's Eve. Our friends departed after lunch yesterday and left us pottering around. In fact both Andrew and I had an hour's nap in the afternoon - sleep simply overcame us!
I have not made any specific New Year's resolutions (in past years they have always revolved around tidying up or losing weight, both of which now seem a little trite) but I do have some small things that I would like to achieve. I'll share them with you - in no particular order - so that I can give an update through the spring!
1. Continue with my treatment in a positive frame of mind and gradually work on my fitness
2. As I feel well enough make time to see friends and family
3. Do some sewing. I have a couple of large ambitious projects in the back of my mind but also a host of little jobs that I could easily fit in and won't exhaust me
4. Continue recording Gladys' memories of her life. We really enjoyed what we heard over Christmas so I need to keep this up so that we have a record both for posterity and to help us when we start on researching that side of Andrew's family
5. Organise things as far as possible so that Andrew has time to pursue the retirement activities that have been on hold since July last year
If I manage all that lot in any measure I shall feel well pleased!
In the short term I am looking forward to a quiet weekend before the chemo onslaught next week.
We had a very quiet New Year's Eve with two of the party retiring to bed at 10:30pm and the other 3 of us lasting until just after midnight. A real pleasure on New Year's Day was listening to the bells being rung in the church - not too early of course. Here in the village they ring on the morning rather than at midnight on New Year's Eve. Our friends departed after lunch yesterday and left us pottering around. In fact both Andrew and I had an hour's nap in the afternoon - sleep simply overcame us!
I have not made any specific New Year's resolutions (in past years they have always revolved around tidying up or losing weight, both of which now seem a little trite) but I do have some small things that I would like to achieve. I'll share them with you - in no particular order - so that I can give an update through the spring!
1. Continue with my treatment in a positive frame of mind and gradually work on my fitness
2. As I feel well enough make time to see friends and family
3. Do some sewing. I have a couple of large ambitious projects in the back of my mind but also a host of little jobs that I could easily fit in and won't exhaust me
4. Continue recording Gladys' memories of her life. We really enjoyed what we heard over Christmas so I need to keep this up so that we have a record both for posterity and to help us when we start on researching that side of Andrew's family
5. Organise things as far as possible so that Andrew has time to pursue the retirement activities that have been on hold since July last year
If I manage all that lot in any measure I shall feel well pleased!
In the short term I am looking forward to a quiet weekend before the chemo onslaught next week.
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