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
I was woken at 6.00 am for a blood sample, and then hooked up for the first infusion of the day, which lasted two hours. There was barely a gap in the infusions, so it was nearly 6.00 pm when I regained my freedom.
I’m getting used to my new friend – the little trolly which is like a coat stand on wheels. We go everywhere together, not that everywhere is a big space. There’s the bathroom. I sometimes recline on the bed. I sometimes move to a chair. When I can I take a walk round the bed and back. I’ve taken to practising salsa steps, which is a good way of getting some leg and hip movement going . I think I am going to nickname my friend Flo – a pun on flow if you haven’t tuned in to my wonky sense of humour. There isn’t much option for a walz or a quick step. I could practice a fleckerl, but I’m not sure that would be safe.
The best jest of the day is when one of the care assistants asked if I was a monk – I put Buddhist as my religion. Odd, isn’t it – if I put Christian I would not get asked if I was a priest. I’ve had a few interesting conversations on the back of that – maybe I will be coming back to offer some mindfulness teaching.
The next few days promise to be similar to today. The transplant takes place on Wednesday – day 0.
Overall my mood is fine, and I am having no big physical reactions. The only thing is a bit of constipation, which is odd as nearly every drug warns of diarrohea. Visitors, online and in person help. And I am doing a bit of binge watching of Shetland.
So, two thirds of the way through the chemo. The next two days they add another drug which may cause a fever. But all being well we move onto the transplant in three days time.
Day -2
Peak chemo today – three different infusions. Tomorrow we drop to one chemo infusion, but there are plenty of other drugs to keep me hooked up to Flo.
Thank you all for the messages, videos, visits and calls. They really make a difference.
Today I have felt quite lethargic. All to be expected. It is not a leaden lethargy, nor a weariness. My head seems to be fairly empty of thoughts – who knew it would take something like this to still a buzzing mind – Eckhart Tolle, you might want to make a youtube video on this.
Another feature of the day is a sense of accepting the process. There’s the idea of how I would handle this, and the reality. Whenever you enter into any challenging process there is a preemptive anticipation of what it will be like and how you will manage it. Then you arrive and it is very different, but not in a concerning way, but not the terrain that you expect however many maps you read. Now the planning mind has shut down a little, and I can just be with how I am.
I’ve never liked the fighting cancer metaphor. It may work for some, but it frames the cancer as an enemy to be vanquished. Rather, I would like to approach it with as much understanding as I can. That way there are fewer surprises and less deflation when things do not go to plan.I ask the staff what is being administered all the time, and what it does. It’s a sort of chemo Kung Fu approach, watching carefully and letting it unfold. I remember watching Bruce Lee in a film, long before I took up meditation, and it was less the fighting that impressed me, more the ability to remain still and present.
It is a truly amazing process. How they came up with the treatment regime beggars belief. This chemo kills off this part of your bone marrow, that medication compensates for it. I’m taking about 20 pills a day and today, not including flushing, I will have had seven different infusions, spanning from 30 minutes to twelve hours. A tight rope walk across the grand canyon feels like less of a challenge, but it is similar in many ways – focus on just the next step and correct the wobbles, and don’t look up or look down.
So using the Artemis metaphor, I’m flying past the moon before turning and returning in two days time.
I deeply appreciate all the messages, videos, photos and calls. It would take more energy than I have to reply to them all right now, so if you only get a little emoticon of appreciation, I will say more when I can.
Flo and i are developing a better relatioship. I’m getting used to taking her with me. Strange how you can anthropomorphise something that looks like a coat stand on wheels. We’ve been hooked up for 22 hours continuously. I still haven’t worked out how I will shower with her on a short leash, but there will be a way: challenge 1 will be getting my tee-shirt off over the line.
I’m glad some people are enjoying this. It is a good personal discipline in the midst of what might have been an overwhelming maelstrom of events.
Day -1
Just a quick update today. I had an expected reaction to the chemo last night, and the team handled it brilliantly. But I was pretty washed out and slept on and off over the morning. I perked up in the afternoon. But then faded in the evening. So, all is on schedule for the actual transplant. So signing off now. Hopefully I will have more energy tomorrow.
Day 0
So the transplant day arrives. This is where Artemis starts its return to earth.
The last seven days have not been as gruelling as I expected. Only the chemo on day -2 was challenging. The biggest challenges have been the logistics of living in a room semi-permanently hooked up to Flo, the consequent lack of exercise, the food which seemed ok to start with but dipped to horrible yesterday, and constipation which is caused by a mix of inactivity, poor diet, and the medications (for all the warnings of diarrhea, that is not one i expected).
Yesterday my wife brought some fresh fruit peeled and chopped (I have to avoid the skins), and some dried figs and apricots. Already that seems to have worked its magic – for the first time when they ask my about bowel movements I can say yes. Who would have thought a good long poo would bring such joy.
I’m hoping to get unhooked from Flo for a couple of hours before the transplant begins. My wife is coming in to witness the transplant, though I gather it is anticlimactic.
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I was unhooked from Flo at 9.30, then rehooked for more medications at 11.00. The balancing act so far has been to keep me safe while the bone marrow is prepared for the donor cells, which means killing off most of my blood production system and my immune system. Now the balance will be keeping me and my donor cells safe while they engraft.
My wife arrived at ten – hanging around waiting at home was too much. The cells arrived at 3.00 pm, having been donated two days earlier in Germany – an amazing feat of logistics. After some premedications the cells were given as an infusion over 18 minutes. The staff stayed while it progressed to make sure no negative reaction, which there wasn’t. There were photos and it was all done by 4.30.
The first signs that the graft is taking will be from my blood, when neutrophils turn up – they are the first line of infection control and have now been wiped out by the chemo. Platelets and donor red cells will turn up a few weeks later., so I will need transfusions until the new stem cells have started to produce new blood.
I’d heard that the infusion could be an anticlimax, but it wasn’t. I’m sure my wife. had a big grin behind the mask – and I certainaly did. So I.have an official second birthday on 15th April – the start of spring.
I’ll continue the diary in a fresh blog tomorrow.