Home isn’t where I thought it was…

My Allograft 2018/19 – 35. 7^th February 2020

By Andy Burrows, 7 February 2020

I’ve been pondering this for a few weeks. I think I’m coming to a point where these allograft updates need to fizzle out (although I “never say never”!). But to be honest, it’s a struggle to know what to say.

Why do I say that?

Well, it’s starting to dawn on me again that when you’re telling a story, even your own life story, your natural desire is to talk about progress towards a goal. You want to work towards a final line that gives some closure. Like, “and they all lived happily ever after”, or, “the rest, as they say, is history.”

I guess part of the problem is that I’ve been trying to commentate in quasi-realtime, whilst at the same time trying to tell it like a story where I know the ending.

So, I envisaged a point at which I’d say, “so now I feel fine and I’m back at work. Wasn’t that jolly fun – Not! But hey, I got through it. Onwards and upwards!” And then in my dream ending I’d write, “THE END”, and I’d never write a single word about my cancer ever again!

The reality that I’ve been pondering is quite different, and it’s made it mentally and emotionally tough. It’s like if people ask me, “how are you?” I may pause for a few seconds. But whatever I end up saying, I’m feeling a huge knot in my stomach because I don’t really know any more. It’s complicated… to me anyway… although it probably doesn’t look like it should be complicated to all but the closest to me.

Let me try to explain.

Good news first

First, to set your mind at rest, I’ve continued to avoid serious infections since my last hospital admission in October.

And in general terms I continue to improve physically, in strength and stamina. I’ve got to the stage where I can now go for those long walks with Heidi and the dogs.

And I look a lot better. For those who saw me during the summer last year the improvement is remarkable.

Mentally, too, I’m mainly sharp, even though most days I’m pushing past fatigue.

But there are two things, mainly, that torture my mind in different ways.

How much is too much?

First, the physical improvements are unreliable, inconsistent and slow.

I was pushing myself through the pain barrier, stretching my physical capacity almost every day, and starting to feel positive that I was making good progress.

And then I had to take several breaks.

Some days, I pushed myself too hard in garden and home maintenance jobs that turned out to be much bigger than I’d thought. I ended up exhausted and with sore and strained muscles for days.

Physically overstretching like that doesn’t really matter in the long run. I know that it has done me good, so long as I don’t let the excessive pain put me off continuing to stretch myself.

But then on a couple of occasions I’ve had to take a break from the physical exercise regime because I suddenly and inexplicably hit a wall of physical exhaustion and depression. That was a shock. It was frustrating.

All I wanted was to build my fitness, strength and stamina in a roughly straight line. But suddenly I just couldn’t do it!

I’m learning, however, that if negative thoughts and low moods don’t connect with obvious events (i.e. there’s nothing specific upsetting me) there is a high likelihood that there are hormonal reasons for feeling low. Addison’s Disease (a complication where the stem cell transplant has affected the functioning of my adrenal gland, which produces essential steroids) is more significant than I realised.

And I’m tentatively getting to grips with understanding how to deal with that with adjustments to my daily steroid doses.

So, whilst I can get very emotional for a couple of days at a time, and a couple of times have given up on everything temporarily and just gone to bed, I get up the next day and put one foot in front of the other.

So, I’m heading in the right direction, yes, but because recovery isn’t consistent, I feel like I have to live fairly tentatively. And that’s frustrating.

It gives me that feeling that I still can’t return to normality.

Lymphowotsits

On top of that, secondly, in spite of feeling mostly ok, the most significant restrictions are still upon me.

I have to avoid infection risks – people mainly. In fact, I’m still just as vulnerable to infections as I was back in July last year before I went downhill and ended up in a spiral of infections in hospital.

I’m still in a precarious position. I could suddenly, even now, become feverish because of an infection, and then get admitted to hospital for another few days or a week… or more.

And there are numbers that make that a brutally objective reality, rather than just the negative thoughts of a battle-weary cancer survivor.

Every three months I have certain things tested. One of those is a blood test which measures my “CD4” count.

CD4 is a type of lymphocyte, which is itself a type of white blood cell.

White blood cells generally are all about fighting infections. However, whilst my other white cells are all showing healthy levels – even my neutrophils – my CD4 cells, and indeed my lymphocytes in general, are extremely low.

If you were to google CD4, you’d find this: “A healthy immune system normally has a CD4 count ranging from 500 to 1,600 cells per cubic millimetre of blood ….” My medical team says 300 would be an acceptable level.

My CD4 count was 50 when tested in November! And I’ve just heard that it was 40 at the end of January. It was 30 in July last year when I started on my spiral of infections that pretty much floored me for three months. So, not much improvement so far.

The significance of CD4 is that it’s the cell that helps, “coordinate the immune response by stimulating other immune cells… to fight infection.”

Now, here’s the kicker:

I have been told that my CD4 count has to be normal in two successive tests – 3 months apart – before the doctors will advise me to relax my infection-avoidance restrictions.

… And then they drop in at the end of the sentence (presumably hoping it’s vague enough for me to ignore!), “… and we’ll probably be more cautious with you because of the stuff you’ve been through.”

Logically working through the implications, that means that I am facing at least another 6 months (that’s a minimum) of restrictions designed to avoid the risk of infection.

And I’ve also been told that if I were to pick up an infection, spike a temperature, and so on, even after my CD4 count is normal, they’d probably still want to admit me to hospital to look after me.

They clearly take this really seriously, but my mind still boggles over it…

But, then again, most of us know of people who have died, not directly because of their cancer, but because of complications from infections picked up post-treatment.

In my case, my vulnerability is an even bigger risk, because of the extended time I have to spend with a weak immune system. This is not just a couple of weeks of being neutropenic between chemo cycles!

Why is it so vexing?

So, just because I look well, and I function ok most of the time, doesn’t mean I can get back into normality anytime soon.

But why does this boggle my mind so much?

Well, it’s because, even though I may often feel physically normal, for a long time I won’t be able to do normal things – shopping, travelling on trains and planes, going to the cinema, sitting in restaurants and pubs, going to church, staying in hotels… and going to work. The latter is probably the biggest thing.

I feel self-conscious explaining it to people, like I feel they’ll be really sceptical and think I’m lazy. It’s so invisible, and such a lengthy process. I know I shouldn’t worry what other people think… but I do, even though I try not to.

But, it also gives me some changes to ponder.

In the short term, for, let’s say, a minimum of 6-9 months, I can’t go back to my previous line of work, working in offices with Finance departments.

So, what do I do… both to avoid boredom and to bring in money to provide for my family? Charitable help is drying up, and I hate having to rely on state welfare benefits and the kindness of wider family. I feel like such a sponger!

In the long-term, I reflect on the fact that even if it is only another 6-9 months of restrictions, I will have been off work for two years, and I’ll still be at risk of going off to hospital if I get a complicated cold!

Two years offline, and then still I’ll be dependent on regular medication, and will be admitted to hospital if I get a fever. I’m tempted to conclude that I’m not really going to make it back to doing what I was doing before. I’m just not going to be reliable enough.

Who moved my cheese?

My mind boggles because I’d taken for granted that this fourth cancer challenge would follow a similar pattern to the previous ones – diagnosis, treatment, remission, back to normal (for a while).

I’d pictured my journey this time round like a Mount Everest ascent – a trek to Base Camp (the pre-transplant chemo), the ascent (the stem cell transplant process), the descent (the recovery).

I’d pictured myself aiming for re-integration and getting back to normal after returning to the equivalent of Kathmandu airport!

But having wandered around in this cold, desolate (yet often beautiful) terrain for more than 18 months, I’m now facing the possibility that getting back to where I was in the middle of 2018 (minus the lymphoma) may not actually be possible.

And if that’s the case, can I really grant myself the luxury of living in limbo for another 9 months while I attempt to get “home”?

Perhaps “home” isn’t quite what I thought it was?

Perhaps there’s a “new normal” that I have to live with? Perhaps I have to accept a level of uncertainty and get on with things. “New normal” is the phrase that some of the professionals have been encouraging me to think about.

The new normal

And I have thought about it. I thought that the new normal would mean starting to commit to my Supercharged Finance internet training business as a viable family-supporting financial venture – i.e. work. I don’t need to go to an office to work on it, so why not?

The new normal would mean somehow accepting the potential for hospitalisation setbacks without worrying.

The new normal would mean being ready to readjust my routine and my direction and plans on the basis of test results, scans and doctors’ opinions, on a regular basis without letting it get me down.

The new normal would mean making a proactive effort with friends and social interaction outside of Facebook, as well as simple things like dressing smarter, shaving regularly and exercising consistently (but not letting it get me down if I can’t).

The thing is that I’ve now tried all these things, as well as the physical exercise regime, etc, and I’ve ended up having to lower my sights. And it’s so hard not to be disappointed – gutted.

How can this be any kind of normal?!

‘Normal’ normally involves some kind of routine which means that you can predict with reasonable accuracy what you’ll be able to do each day. Ok, we all have to be humble. Even when I’m well, I always tend to add, “God-willing” to my stated intentions. But, normally you plan for things. You commit to times, dates and deadlines.

Now I feel like I can’t commit reliably to anything. So, my “new normal” is by definition not normal at all, because it involves strictly not committing to deadlines!

That’s a completely different way of working!

So, I’ve had to rethink and rethink, over and over. And that’s why this blog post is only coming out now, even though I started writing it at the end of November!

The non-conclusion

Bringing this already-too-long post to a close, there is no conclusion.

The new normal, for now, involves becoming comfortable with even more ambiguity and uncertainty. It’s a new level of training in what “one step at a time” means.

It means picturing myself in the icy waste, with snow covered mountain descent all I can see behind me, and the same in front of me. I see a milestone that says, “one year since receiving donor stem cells” (that’s what it is today), and nod at it on the way past without giving it more than a moment’s thought.

Perhaps I should appreciate that milestone more. Perhaps I should be more amazed and grateful for getting through to where I am now, given what I’ve faced over the last year, 18 months, or even the last ten years of dealing with lymphoma (which was yet another milestone that I passed on Christmas Day 2019).

I definitely should!

The question I ask myself is whether I can learn to be content, joyful even, thankful for the good things I see and experience every day, even when the future is so foggy, the journey so long, and I don’t even know where I’m really heading.

But then I also ask myself why I’m asking myself that question! I decide. I choose to “take one step at a time… and still keep smiling!”

And that line from the movie Cast Away is still relevant: “I know what I have to do now. I got to keep breathing. Because the sun will rise tomorrow. And who knows what the tide may bring.”