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!
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