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.
Saturday, 19 November 2016
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).
Subscribe to:
Comments (Atom)