Off track? Against whose plan?

My Allograft 2018/19 – 25. 11^th August 2019

By Andy Burrows, 11 August 2019

You have to feel it to know it

I’ve noticed that this allogeneic stem cell transplant, especially for lymphoma, is so specialised that it’s very difficult to find anything on the internet to help when you need to crosscheck what you might be feeling, physically or emotionally.

Sure, there are generic articles on the Anthony Nolan blog or Macmillan discussion groups that you might be able to find, but nothing specific.

I find that googling things I want to know about “xyz after allogeneic stem cell transplant” comes back with PhD dissertations and research papers that I don’t even begin to understand.

Contrast that with googling stuff to do with lymphoma or chemotherapy, where you get all sorts of helpful articles from Macmillan, Cancer Research UK, etc etc.

And probably that’s a good thing… I think. It feels like the variety of experiences is equal to the number of people who have the treatment. I shouldn’t expect my experience to be similar to someone else’s.

It would sometimes be nice, however, to have someone say, “don’t worry, I went through that and it was fine,” rather than having to rely on the doctors’ politically correct answers. I don’t blame them. They’re damned if they do and damned if they don’t. They have to say, “it looks like you’re struggling with a virus, but I realise that you’re not going to be fully reassured until you have a scan,”… even if at the back of their mind they may have multiple worrying theses that haven’t even crossed your mind.

And maybe there’s a case for a return to the mollycoddling, “trust me, I’m a doctor”, mentality. Perhaps we’ve let the pendulum swing too far in the direction of our cultural obsession with privacy and access to what people are saying about us.

I mean, I now have online access to every test result, every letter that goes between hospitals and GPs, within a few weeks. So, I can ask the pointed questions like, “why did you write to the GP that you were ‘keeping an eye’ on xyz and not mention it to me?” And then that forces them into a politically correct holding response where you know you’re being fobbed off… but probably legitimately. Why would I want to know all the things the doctors don’t know as well as all the things they do know and can tell me?! Recipe for anxiety!

That rambling introduction is only intended to bring me to the point of saying that it made me think that I’m not doing a very good job of sharing my experience for those who come after me.

I may think it’s boring, but hey, that’s a feature of the whole thing. The light at the end of the tunnel is so far away!

There’s no use just saying it in one sentence – “it’s boring!” That would be a little like an episode of The Walking Dead where they just say, “lots of people died slow, painful, gory, harrowing deaths, leaving the camp emotionally devastated.”

I always say about The Walking Dead (one of my favourite dramas) that you have to put yourself through the awful emotional trauma of seeing well-loved characters ripped open by zombies (week after week) before you truly understand and relate to the emotions of the characters. Not only that, but you have to go low with them to be able to feel the exhilaration of the highs when friends and family are reunited who were long thought to be dead, or to feel the guilt-stained satisfaction of a victory over an evil enemy.

So, in some ways, I have to make you feel the tedium! And those who go through similar stem cell transplants in future, and read back on this, will recognise the tedium, and know that at least there is empathy for that part!

Infections continue to be a feature

So, finally, what has been happening?

Last time I wrote I was still in hospital, feeling ok and waiting for the final sign-off to come home.

I came home in the middle of the day on Wednesday 24^th July. I’d been admitted twice in two weeks, and spent a total of seven nights in hospital connected to an IV.

The next day was the hottest day of the year here so far: 38C and humid. I struggled in the heat/humidity, even though I kept indoors out of the sun. All the doors and windows were open, but I could hardly move.

On the Friday it cooled down to a mere 25C! On any other day, that would have been considered hot. But it was much more bearable.

On Saturday 27^th, I decided that it was time to try a little exercise, since I felt reasonably ok. So, I joined Heidi for a dog walk.

I didn’t regret it, but I did feel the strain to the extent that my legs ached from about half way around and I slowed us down quite a lot! So, I decided that I might try every other day or 3-times-a-week or something, to get me going.

The next day (Sunday), though, I woke up with a splitting headache and feeling achy and feverish. “Not again!” I thought.

However, being a Sunday, and not wanting to go back into hospital, I decided not to follow the correct protocol. I took my temperature and it was around 37.7. Instead of phoning the hospital and continuing to monitor my temperature, I took some paracetamol and resolved to phone them depending how I felt when it wore off.

Well, then I sweated for an hour or so, and then was just exhausted and lightheaded for the rest of the day. The temperature and flu-type aches didn’t come back that day.

Monday was similar but slightly better, but Tuesday (30^th) my temperature reached 37.9. I did the same thing and the same thing happened.

At this point I phoned the nurse specialist just to talk through the weirdness, and she told me to keep doing what I was doing, phone them if I got worse, and they’d talk about some more tests to do when I came in on Thursday.

On Thursday (1^st August), the doctor told me that I had tested positive for rhinovirus (one of the common cold viruses), and that my weak immune system was evidently struggling with it. That was their considered opinion, rather than anything more sinister or serious.

Of course, he was happy when I said that Wednesday and Thursday had been better mornings. But the pattern was establishing itself – spike temperature between 4am and 7am, feel fluey, hot and achy, as well as utterly breathless and lightheaded; take paracetamol, spend 1-2 hours dripping with sweat (such that I couldn’t wear a top), then spend the rest of the day feeling lightheaded and washed out but generally ok.

The next day, right at the end of the day, one of the nurse specialists phoned from Southampton saying that they’d decided they wanted to see me on Monday in the nurse-led clinic that I used to attend when I first came home after my transplant.

Saturday, Sunday, Monday, within the exact same pattern, things worsened again. My temperature went past 38C (the trigger point for readmission for us immunosuppressed patients) – 38.1, 38.3, 38.5! But I didn’t want another week in hospital when I knew the pattern, as well as the fact that they probably couldn’t do much about a virus anyway.

At the appointment on the Monday (5^th), I had a chest x-ray (to rule out secondary bacterial infection) and a full suite of blood tests. The only news I was told was that my CRP count (which is a vague indicator of inflammation and potentially infection) was up over 200, which was higher than when I was in hospital, so they wanted to monitor me carefully (but fortunately not admit me!).

By my Thursday appointment (8^th) the daily temperatures had receded back just below 38C. Apparently my chest x-ray was “pristine”, and there was nothing really abnormal apart from the CRP count.

The doctor circled my CD4 count on her notes several times while talking to me, saying that it was very low. I didn’t ask for more information. But I know that it’s the measure they use for the strength of one’s immune system. People with AIDS have low CD4 counts. Mine is obviously low because of my treatment and the cyclosporine.

What that means is that even a common cold will hit me hard.

I asked about the light-headedness. She reckoned that it was dehydration, and with temperatures that high I should be drinking at least 50% more each day.

I’m sceptical. This breathlessness and light-headedness is pretty debilitating. It has meant that since that dog walk on 27^th July I have been almost housebound, not really wanting to venture off the sofa very much. I have become a coach potato.

When I do get up to do bits and pieces, my Apple Watch tells me my heart rate – 130-160bpm. My resting heart rate is 90-105bpm. As Heidi pointed out, though, with a heart rate like that I shouldn’t need exercise to burn calories!

But it also makes it difficult to think or hold conversations. I would love to be writing more for Supercharged Finance, but my brain is often fogged. I’d love to have people over for coffee, but I get exhausted from talking.

So, Netflix and old DVDs it is!

The last few days there have been encouraging signs in the right direction. The morning fevers and headaches seem to be clearing up and the sweating is less. But light-headedness continues.

Off track, according to whom?

All-in-all, so far, it’s a month of being off track. All because of infections picked up due to my weak immune system. Funny that only two months ago I was reflecting on the hidden dangers.

A month of exercise and energy levels to catch up on (at least). More than a month of Supercharged Finance development.

The other thing it shows is that it’s unwise to have dates in my mind. Three months, six months, a year… no one told me to think of them as hard and fast expectations. And having dates in my mind makes me think of setbacks and delays, disappointment, impatience, discontent.

I’d been thinking that I’d be ready to start reintegrating, socialising, looking for work, around Feb/March next year, perhaps even a big product launch for Supercharged Finance. That now actually feels stretching.

So, I really do have to rediscover the ability to be content in the present, only thinking of the next step.

It is a long journey. I always knew it would be. But you never know what it will actually feel like until you go through it.

Each step may feel much the same as the last, and may not feel very big. But the steps are steps in a direction. There are things to be joyful about each day.

So what if there are more setbacks and bumps in the road? So what if I’m still struggling financially and not back at work until 2021 or even 2022? This time is not wasted. It’s not pointless.

Patience and perseverance is the name of the game!… trusting in The One who has the overall plan in full view.