Here I am, just four months after the referral to St James’s, admitted for a stem cell transplant.
In preparation we isolated (my wife and I) for two weeks, and for the last six months we have been very careful about avoiding infection. I’ve managed to keep up some regular walking despite the anaemia. The only thing I noted as we walked into the hospital was that dragging a full case is hard work and I had to stop a couple of times for a rest, something that a year ago would not have bothered me.
Two days ago I had a PICC line inserted. That way they can administer intravenous drugs and take blood samples without sticking needles in me. It’s very like a cannula but with a long cathetar that goes a couple of feet into a main artery feeding the heart. As I have been having needles stuck in me two or three times a week for the last six months, it is a relief to not have more needles.
We arrived at 6.30 in the evening to be met by two nurses who took various measurements (weight, blood pressure, etc.) and checked for sores and asked a few questions about my health. My wife left about 8.00 and I settled into my room, which is isolated and has filtered air. I got clear instructions on not using the tap water for cleaning my teeth and given a bottle of sterile water. Everyone who comes in has a mask. Oh, and they are all lovely.
This room will be my home, treatment centre, gym, meditation hall, everything for the next few weeks. The countdown begins with day 0 being the day of the transplant itself. So here is the countdown:
Day -6
I was woken at 6.30 to have my observations taken – blood pressure, oxygen saturation and temperature. I had slept fairly well, considering it is a strange room and quite a bit noisier than at home.
I was checked in by a doctor, who asked various health questions. I got some instructions on how to shower – the PICC line needs to be kept dry and I need to use an antisceptic body wash. Everything is geared to preventing even the smallest risk of infection.
I had a trip to the X-Ray department to check my PICC line was ok. Someone came to do an ECG. I’ve had a generous breakfast, and was given biscuits with a mid morning coffee. I’ve been put on a high energy diet. so will get a mid afternoon and evening treat – cake therapy, I can handle that.
All this, and it is not even 11.00 am yet.
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I thought I would meditate, only to be interrupted to have my observations done, then I returned to it. Then someone came to carry out an electrocardiogram. Then I dozed off, only to wake up just as lunch was brought in.
The medications are arriving regularly now for nausea, anti-virals, and anti-biotics, all to prevent some of the negative reactions to the chemotherapy and the eventual fall in blood production. Mid afternoon cake arrived at 2.30. My wife then arrived with a mask and sat a distance away from me.
All tests done, preventative medications started, the first dose of chemotherapy arrived. It was administered intravenously via the PICC line. As I am used to infusions it seemed very quick and uneventful, taking just over an hour including set up and take down.
Tea arrived at 5.00 (there’s a theme developing here). The food is good, but a bit beige, and plenty of carbs.
My wife left soon after 6.00. It is so strange not to be able to give her a hug, and for her to sit a distance away with a mask on. I then spoke to my daughter and grandson who are on holiday, obviously having a whale of a time.
Then some yin yoga. I’ve managed to adapt to doing it on the bed. Exercise is going to be one of my biggest challenges. I’ve done a few short walks around the bed and some qi gong / moving yoga. The yin practice has become a staple as it helps keep my joints loose without too much strain, and now it is great as you don’t need much space.
Not much left for the rest of the day. I will have an evening drink (with more cake), and maybe find something to watch. There will be another little pot of medications no doubt, and another taking of my observations. Then sleep.
It has been a busy day, not as testing as I might have thought, and all helped by the cheerful staff, the messages of support, my lovely wife and family.
Day -5
A friend messaged me this morning to say my blog entry for yesterday made her think of Artemis, the moon shot, with the astronauts in a confined space. Extending the metaphor, I am on the outward leg of the journey. The medications are there to remove my wonky blood cells, and on day 0 the donor graft marks the return journey, with all the challenges of re-entry into earthly life.
I slept ok, but one of the challenges is keeping a fluid log. Every millilitre in and out is logged. (I’ll leave the details to your imagination.) At 6.00 someone came to do my observations, then at 7.30 someone came for a blood sample. With breakfast came a side order of 9 tablets. There is clearly a fine balancing act in terms of keeping me well while treating the cancer. Then my room was thoroughly cleaned, my bed changed, and I sat down to meditate, to be interrupted briefly by mid-morning coffee.
The doctor advised I will need red cells and platelets today, but my neutrophils are holding up. That’s consistent with the pattern over the last few weeks. So I will be hooked up for three or more hours today. I was given the transplant schedule, and the first three days are about suppressing my own immune system so that the donor cells don’t get rejected.
The chemo arrived soon after 2.00 and I was hooked up for about four hours – the chemo only took 30 minutes, but then 30 minutes for platelets, then 90 minutes for red cells, and time for switching. I feel a little more alert after them – low red cells makes me tired and sleepy.
My wife turned up after the chemo was set up, and I had drifted off to sleep. She stayed until 6 when my daughter arrived. I’m getting used to visitors sitting a distance away with a mask on, and offering virtual hugs as they go.
The specialist nurse came mid afternoon, and we discussed the ongoing plan. She was checking all was well. If my donor cells kick in quickly I may be able to go home in three or four weeks. When I do, I may still need the occassional infusion / transfusion for a while.
Less going on today, but barely 20 minutes go by before someone pops in to ask something, give me something, or do something. I half jested that this might be like a long meditation retreat, but the constant interruption means it is anything but. Fortunately all the staff are friendly and supportive.
Early to bed again – I expect I will be woken early. Fortunately I am sleeping well.
Day -4
Today began, as I expect it will over my time here, with me opening a newspaper, missing my early morning coffee, missing the familiarity of home and my wife getting up and pootling about and us chatting over breakfast. Then there were my observations and a nurse took a blood sample. The nurse was delighted to hear the name of someone she had cared for over Christmas whom I had connected with via the MDS Patient Support Group, and very pleased to hear he was doing well.
After breakfast I called my wife and then asked for a towel so I could have a shower. The nurse said the first of my infusions had arrived, and did I want that before my shower – it was platelets which surprised me as I had some the day before. The next four hours were infusions on a drip, interspersed with a quick shower.
I had felt quite sluggish when I woke, and unusually not engaged with reading or doing a puzzle. While I was hooked up to the drip, I spoke to my son on Zoom, and one of my grandchildren on WhatsApp. My son has a cold so is nervous about visiting until that clears, and children are not allowed to visit; I’m allowed a maximum of two visitors a day, but online visits are perfectly fine.
So, I am halfway now through the chemotherapy regime. So far no negative reactions, but I am being given regular medications to offset some of the side effects. I think if I was cooped up in such a confined space, with the constant interruptions, without any medications or chemotherapy I would be feeling sluggish in a morning. I am missing what little exercise I had before.
My wife turned up as the chemotherapy infusion was coming to an end. We caught up on family news, played a few games of dominos, then my tea arrived. It is quite strange having to keep a distance and for visitors to be wearing masks, and most especially not being able to exchange hugs – I will be seriously hug deprived by the end of all this.
I then listened to a podcast while walking around the room – it is a good way of getting light exercise. It was Mark WIlliams being interviewed by Alastair Campbell and Rory Stewart. It was a good choice – I’ve experienced the delight of being taught by Mark and knowing his work very well.
So, the third day of treatment concludes. I feel less sluggish at the end of the day than I did at the start, but tired and wondering how i might fill the next couple of hours before settling down to bed. The sun had gone down, and I wonder how the next three days will unfold.
(Good to see the other Artemis crew have landed safely.)
Day -3