In the mind
My Allograft 2018/19 – 23. 14th July 2019
By Andy Burrows, 14 July 2019
Feeling the length of the journey
I’ve no idea, as I write these words, what I’m going to say. It just seemed right to update, being six weeks since I last put anything on the blog. So, here goes!…
It’s Day 157 post-transplant, so almost 6 months since I received my donor’s stem cells.
But it’s also almost a year since I started treatment in this my fourth lymphoma experience. This time last year I was going through the stresses of waiting for results and wondering what was going to happen – an ultrasound, a CT scan, a biopsy, a wait, a serious diagnosis…
And even though I’m heading towards feeling normal most days now, there’s still a long way to go.
I can’t go back to work (or even look for work) for another 6 months or more. I can’t socialise in public places. I can’t go out for meals (unless I sit in the shade in a corner of a pub garden… and even then I’ve got to be confident in the food I’m being served and level of hygiene). I can’t even pop to the shop, or meet people for coffee in Starbucks or Costa.
As an aside, those who know me, and those who’ve read a lot of my story, will know I’m not easily irritated by thoughtless comments from well-meaning people. I normally focus on the fact that they’re well-meaning, rather than judging them for whatever thoughtless comment they may have made.
But there have been one or two people – more the professional contacts – who clearly do not get this point, and flip me little messages saying, “are you up to meeting up for lunch?” They clearly are not listening! And it’s not as if I expect people to pick up everything I say and memorise all the complexity of this stuff I’m going through.
But this quasi-isolation is, for me, one of the biggest things.
It’s weird. I look well. I feel ok (I’ll try to explain a little more later how that’s nuanced). But I can’t do normal things. And it’s rubbish, frankly. It really messes with my mind.
There was one evening, a little while ago, when Heidi went to a social event with work. And three of the kids were out having their social life, sleepovers, clubbing, etc. And, before my eldest, Jacob, came along to watch Netflix with me, I just sat in the lounge momentarily feeling left out.
It takes a positive, intentional, shift in thinking to dispel the negative thoughts, accept that “it is what it is”, and deliberately enjoy whatever I can do.
And it’s not like 2016 when I was recovering from my autologous stem cell transplant. By Day 157 after the autograft, I was almost ready to go back to work, and I’d been increasingly working out in our makeshift gym, regaining strength and stamina. Not to mention the fact that I wasn’t forced to be isolated, and I wasn’t vulnerable to infection after about Day 30.
“Recovery” after an allogeneic (donor) stem cell transplant is not about simply regaining strength and stamina after your neutrophil count is back to normal.
There is a tougher physical aspect, which I’ll come to in a minute. But that’s not the main thing.
It’s very much a managed recovery this time around. And it’s managed for a long time! I am aware week-in week-out, that I am nowhere near “out of the woods”, no matter how I look or how I feel on my better days.
I’m on such a concoction of drugs, still, that I have to spend at least 30 minutes every Monday morning popping them out of the boxes and putting them in my pill sorter for the week! (I’ll try to remember to insert a photo of my Monday routine!)
Cyclosporine is the main thing, designed to suppress my immune response, so that my donated immune system has time to settle in, so that I avoid GvHD (graft vs host disease) or transplant failure. The other drugs seem to be all about managing various side effects.
Gradually they’re reducing the dose of the cyclosporine, but it could be anywhere between six and ten more weeks before I’m off that completely.
Then – yes, THEN (it’s not the end of it) – after another six weeks after that, apparently, they will try to “encourage a bit of ‘graft-vs-lymphoma’”. Don’t worry too much about what that means. I don’t really know too much, and they’re really vague in talking about it, because it depends on a number of factors that they’ll assess nearer the time.
The point I’m making is that, really, I am still in a phase of the treatment, and even 9 months after Day Zero they will be doing things to actively treat my disease. This is not just “recovery”, as if I’m going to bounce back at some stage.
The practical implications are far reaching.
For one thing, it’s easy to be tempted to be complacent about the risks after so long. I’ve never had to be careful for so long.
I have to watch what I eat, where I eat, who I spend time with. People who see me have to be careful they haven’t been in contact with infectious people (like with flu, sickness bugs, chicken pox, measles, etc). I have to boil water (even bottled spring water).
I still have to go out of the room when the vacuum cleaner is being used, and avoid doing anything that could disturb dust, mould or fungus.
Another 6 months of that!
And even in this lovely weather we’re having (at least in the South of England!), I have to keep covered up or wear Factor 50, or just stay indoors. Sunburn can bring on GvHD.
And, even though physically I look well, and I can see how much progress I’ve made in the last 4-5 months, I am aware that I feel weak.
I’m now doing 4-5 mile dog walks almost every day. But I still end up breathless on the last incline, and tired and aching afterwards. And I’m still aching after going to the New Forest and doing a 7-mile walk a few days ago!
My body must be improving, but it’s so slow it’s not noticeable. I just don’t recover after exertion anywhere near as quick as I would normally. I’ve got the multi-gym in the back of the garage waiting for me to start using it to get back my strength. But I’m not sensing it’s the right time to start pushing myself.
And financially, well, I don’t like talking finances publicly. But I will do a little, since it is part of this experience.
I’m self-employed. If I don’t work, I don’t earn. So, I haven’t earned in almost a year.
It’s complicated this time round by the fact that Heidi is working part-time, and Jacob and Joe are working too. I say complicated, rather than better, because those facts just mean that state welfare benefits are lower.
CABA (the Chartered Accountants Benevolent Association) has been topping us up with a monthly grant, which, to be quite honest, we couldn’t live without. That is currently under review (because they approve grants in 6-month segments), leaving me a little nervous until they decide whether they can continue. I take nothing for granted (pardon the pun!), and they have given us a huge amount of money so far. So, we shall see… and respond accordingly.
I had been hoping that I could get my little internet “side hustle”, Supercharged Finance, to take off towards the last half of this year, so that we could start to live off its profits and take pressure off finding work next year.
However, I’ve started to realise that thinking like this is causing me to put too much pressure on myself already. (Ok, so I needed some other people to “help” me see the point more clearly!)
And realistically, given the uncertainties of the “managed recovery”, I shouldn’t really commit myself to too much in terms of delivering services, even online.
Don’t get me wrong. I really enjoy putting the work in on Supercharged Finance, the blogging, the social media, the marketing, the online course design, writing and recording.
What I’ve noticed, however, is that all this involves setting myself timescales, which turn into deadlines, which then converts into feeling like I have to spend 6-8 hours a day working. It’s self-inflicted pressure and stress, when my number one priority should still really be the “managed recovery”.
On the other hand, I can’t put it down completely and take a break from it, though. It would stress me out almost as much to have nothing to occupy myself with! It makes sense to keep it ticking over anyway, ready to launch something big when I’m ready.
So, I will have to try to be patient and sensible.
Messing with my mind
If I look at what all this does to me mentally, my mind is frequently a mess, pulled one way and then another. I know I talk about taking one step at a time, and keep smiling. But it’s not easy.
I’m not going to overplay this. In some ways I feel guilty for even talking about it, and sounding like I’m complaining. I am happy every day with the blessings that God has blessed me with. In many ways the hardship is mainly in my mind.
I’m enormously lucky to be able to spend every day with Heidi and the kids, rather than only having a couple of hours in the evenings. And our lovely dogs brighten up our lives, especially Benji the cockapoo. We never lack food on the table. And we have a lovely comfortable, spacious, house. And we have a great extended family.
More than that, I’ve been able to help people. I’ve been around to encourage the kids through exams, Uni applications, career thinking. And I’m hopeful that there are a few others who feel they’ve benefited from my availability, in terms of great conversations we’ve had, problems and ideas discussed.
I know, however, that sometimes all that is not enough to lift the cloud. The length of the trek is simply tiring.
Going back to my Mount Everest analogy, I remember watching macho man Ant Middleton’s documentary covering his Everest summit achievement. Minutes after reaching the summit, he was caught in a storm, and got lost returning to Camp 4. He was several hours late. His cameraman was in tears with worry. And then we see him staggering into camp, hardly able to stand, having witnessed someone dying and others near death.
Even the toughest are sometimes brought to the point of just putting one foot in front of the other.
Thoughts that get me through
What gets you through in those situations where you’re too battered to think?
Quite simply, you keep going, one foot in front of the other. It’s all you can do. When you finally become conscious, you realise how far you’ve come.
But more than that, what enables you to keep going? What gives you the motivation?
The psychologist in the hospital, who I’ve been seeing occasionally to help me think things through, commented recently that even though I have found some things difficult, I seem to be amazingly motivated.
Why do I think that is?
I know that God is helping me. That is not a question in my mind. But what is He helping me to do? He’s not grabbing my feet and sticking one in front of the other! He’s been teaching me the practicality of something I learnt a while ago, and I realised again recently.
What I mean is that I keep going because I know that I can. I know that in terms of showing up to do something, endure something, say something, whatever, all I need is physical strength and consciousness. Everything else is in the mind. Within physical limitations I can do anything I decide to do.
As Stephen Covey points out in his fantastic book, The Seven Habits of Highly Effective People, there is a gap between stimulus and response. It’s a gap in which we can decide how to respond.
We have self-awareness, conscience, imagination and independent will. We are not simply animals.
And what I’m learning, through the struggles I’ve been granted, is to use that gap between stimulus and response to reflect and get a true perspective, to challenge my thinking, to be realistic, and ultimately decide (based on correct principles and perspectives, rather than assumptions that may be untrue, no matter how ingrained they are) to put one foot in front of the other, even when the storm makes it hard to think.
When I talk about correct perspectives, rather than assumptions, what I mean, for example, is that I never think in terms of whether this treatment is going to work or not. And I have, for the time being, got past thinking in terms of whether Supercharged Finance is going to work out as a business. I only think about what I can do to move forward. My problem quite often is being impatient to take those steps to move forward!!
And I use my mind to challenge limiting beliefs, such as what will or won’t succeed, what people will say, whether something will end up being worthwhile. There is only one 100% guaranteed path to failure, and that is to never try.
The truth is that I don’t know whether medical treatments, business ideas, or whatever, will succeed. They definitely won’t if I never try them!
If they do, however, succeed, I may have another 30 years or so to enjoy health, happiness and prosperity. And I may look back and be able to say that those years wouldn’t have been so fruitful if I hadn’t had this decade of turbulence or this year of cancer treatment.
So, I will focus on what is in my control – today – deciding to put one foot in front of the other and keep going and not giving up.