Still Looking for The Cheese
My Allograft 2018-21 – 39. 25th April 2021
By Andy Burrows, 25 April 2021
I know I’ve said this before, but it’s worth saying again. Cancer battles are only partly a battle with cancer.
The physical treatment is a significant challenge, don’t get me wrong. And the treatment for my fourth cancer experience dwarfed the previous three by a considerable margin.
But the bigger battle is always against anxiety, depression, despondency, and financial insecurity.
And the recovery from the treatment, even after you’re in remission, brings challenges that are gargantuan, but not very exciting.
It’s like you’ve been in the boxing ring, being cheered on by supporters urging you on, and then, “yay!”, you’ve won. You’re in remission. The crowd departs and says, “well done!” And then you’re on your own to piece things back together.
And when it’s 6 months recovery, that’s fine. You quietly take each day as it comes and it’s not that long before you find your new cheese (that’s a reference to Who Moved My Cheese, by Spencer Johnson – see my video on that!).
My problem is that I started my treatment for my fourth round in August 2018, with horrible R-ICE chemotherapy, followed in February 2019 by the allogeneic stem cell transplant, which was physically the hardest thing I’ve ever done.
But I still haven’t found the new cheese.
I’m pretty well, generally fit and healthy… except that my immune system is still not even up to the lower limits of normal. Which is why I count myself amazingly blessed that my family has avoided covid-19 when so many others have been affected tragically.
Covid-19 moved the goalposts in a big way, and they’re still moving!
Social distancing has been the norm for me for more than two and a half years. But if it hadn’t been for covid-19 I may have been allowed to get out a little more among people a year ago. Ironically, with cases in the UK low now, but social distancing still in force in some ways, it’s given me a little window to squeeze in a cheeky outdoor pub meal with close family. But when restrictions end, it will get riskier for me to mingle.
The reason I say the goalposts are still moving is that I had been under the impression that covid-19 would come to an end around now, and that, with my immune system (those cd4 cells) recovering a bit more too, my own restriction could be eased.
More specifically, my target had always been to get a cd4 count of more than 300, which is just at the lower end of normal. And that, so I thought, was the trigger point for reintegrating back into the world of face-to-face contact (at least from a public mingling point of view).
But the doctor said the other day that they’d now advise continued social distancing for people like me, even after my cd4 gets into the normal range (and it’s not yet anyway)! My mind was officially blown!
So, covid-19 appears to have permanently changed the rules of the game, because it doesn’t seem likely that it will go away for good. The view seems to be that it will always be going round.
Haven’t I had the vaccine; I hear you say!
Well, yes, I have. And they test my antibodies a few weeks after each jab. The first test showed I had no antibodies. The next test is a month or so away. But with low cd4, vaccines are not guaranteed to be effective. So, I’m not expecting much.
So, spare a thought!
I am in absolute agreement that pandemic restrictions have to end. The general population cannot function under such restrictions in the long term. And with the vaccine roll-out well under way, there is very little likelihood (in my optimistic mind) of the disease hitting harder in future than a seasonal flu.
And yet, for people like me, for whom the vaccine is not effective (assuming it turns out that way), the advice seems to be that this virus is more deadly than any of the other ones they worry about – flu, colds, norovirus, shingles, measles, etc. The doctor said to me, “you really don’t want to be catching covid”.
He said, “you need to exercise virus avoidance, and that means people avoidance.”
And yet, he seemed to accept that even that wasn’t realistic, so he said, “you’ve got to take your own view of the risk and what risk you want to take.”
So, I asked what the risk was. He said, “I can’t tell you what the risk is.” Helpful, or what?!
So, here is my amateur calculation of the current risk – of covid-19:
In the last week, 15 people per 100,000 tested positive in Hampshire. That’s only test results, so let’s double that to be on the safe side. And that’s only in the last week. So let’s multiply by 3 to get the number who would be infectious. That’s approximately 100 people per 100,000. So, 0.1%.
So, if I knocked on one random door in Hampshire and shook the hand of the first person who answered, talked to them at close quarters for 20 minutes and then gave them a hug, I’d have a 0.1% of catching covid-19 (because I have no immune system).
The thing is, I don’t know whether that’s high or not. Doesn’t seem that high to me! But then it probably multiplies by the number of people in the particular place I might think of going, and not just the number of people currently there, but the number who have been there in recent hours.
Can you tell I’m tying myself in knots?
Ultimately, the point is that the less people I meet in an uncontrolled way (i.e. where I can’t confirm their wellness, make sure they wash their hands or wear a mask) the lower the risk, even if that can’t be quantified.
The question, then, becomes one of weighing how much I want/need to do something against the amount of risk (considering things like number of people and cleanliness).
That’s the conundrum I’ll have to live with after June when hopefully everyone else will be back to normal.
You may or may not think that’s a difficult situation. It’s probably something I’ll get used to.
The unfortunate thing is that it makes my two little targets less possible. I’ve said since 2019 that the two things I would look forward to when I am able to get back to normal (like a sign that things are back to normal) are – 1. Go for a meal at Pizza Express with Heidi and have dough balls and one of those large glasses of Peroni; 2. Take my daughter to visit Harry Potter Studio Tour.
Chances are I may be able to do those things in some safe way at some point soon, with some care and thought. (We managed an outdoor table at a pub the other day.)
The point is that they won’t carry the symbolism of the end of my fourth cancer round…
Because it doesn’t feel like this has an ending… it’s time for a new normal… new cheese.
I’m working on it!
Two thoughts you may want to consider from my ramblings.
Firstly, to those who are normally healthy, and have had your covid-19 vaccine, don’t be anxious about going back to normality.
In fact, grab that normality and revel in it! Hug your grandchildren. In fact, hug anyone you like. Have dinner parties. Play rugby and get stuck in that scrum. Dance. Go on trains. Go to pubs. Watch a movie at the cinema. Go to a show.
Enjoy life. Your risk now is pretty small.
Thank you for following the rules while they had to be in place. Most of you under 60 and healthy were not doing it for yourself. You were doing it for me and for the protection of people like me.
Now (I believe) it’s time for you to get back to enjoying life to the full – with all the physical contact and proximity that naturally involves.
For those, like me, still vulnerable to covid-19, it’s on us now to protect ourselves.
Secondly, it strikes me that the present and the future are intricately bound together. What I was going to say was that sometimes I am so wrapped up in looking forward to what I’ll have in the future (like my trip to Harry Potter Studio Tour… or even just a functional immune system) that I convince myself that my enjoyment and happiness are always in the future, when I’ve done this, when I’ve earned that, when I’ve recovered from the other.
And that means I miss a whole load of enjoyment today, because I’m fed up that future enjoyment has been pushed further away again.
And yet, what I do today has to be determined in some way by what I want for the future. What am I building? Where am I going? Life without goals is life without purpose. And life without purpose is life without meaning. And that eventually becomes deeply dissatisfying.
Part of the answer is to get at least some satisfaction, contentment and joy from the working towards goals… rather than getting all the satisfaction from achieving the goals. Then at least you’re enjoying life, whether you’re reaching your goals or not.
But that can’t be the whole answer. A lot of really successful people have noted that their success didn’t satisfy them or make them happy. And I can’t really imagine that you wouldn’t feel a bit bummed out if you never achieved what you were aiming at – ever.
But I’ll leave that one for you to think about!