It’s been a while, but it’s still not finished
My Allograft 2018-20 – 38. 4th October 2020
By Andy Burrows, 4 October 2020
In case you were wondering, I am still getting on well, but I still don’t feel close to writing the final instalment of my allograft story.
It’s more than 26 months since I was diagnosed with relapsed Diffuse Large B-Cell Non-Hodgkin’s Lymphoma. And it’s 20 months since I had a stem cell transplant using cells from an unrelated donor.
Physically, I’m basically strong and fit. I can’t say otherwise, having been on long walks with Heidi and the kids and dogs during the summer, in Cornwall and in the New Forest. I do get aches and pains, and I do get exhausted, and I know that some of that is due to the way the treatment has affected me. I haven’t been able to maintain the level of exercise I was doing in isolation until June 17th when I came home. Joint and muscle aches and strains make it too hard now that I’m also out and about doing lots of walking. And I know that normal people should be able to keep that going.
But, I can’t complain. I don’t. But it does make me wonder and worry a tiny bit occasionally.
Still on the sidelines
The main issue preventing me from getting to what I consider to be the end of this story is my “immune system reconstitution”. My immune system is still extremely weak. As weak, in fact, as it was this time last year when I’d just spent 3 months going in and out of hospital with repeated infections.
I’ve done well, therefore, to avoid infections for the last 12 months. And it’s easy to take that for granted.
I’m still on daily medication (including preventative anti-viral and antibiotics) as well as my 3-monthly IVIg (intravenous immunoglobulin), which all helps. (Although, I had a bit of a problem with the last IVIg, last week, where I had a severe reaction part way through the infusion: stars in my eyes, light-headedness, splitting headache, then vomiting, which all cleared within 10 minutes of stopping the infusion. I’m not sure what they’re going to do about that!)
What it means is that I am still being advised to stay out of circulation and keep taking other precautions (such as boiling drinking water, avoiding unpeeled salad/fruit, unpasteurised or uncooked mayonnaise/pate/soft cheese, etc).
Covid-19 doesn’t change anything for me, although doctors occasionally say confusing things. One time, one of the consultants mused that it’s actually safer for us transplant patients now than it was pre-covid, because everyone is wearing masks, washing hands and standing an acceptable distance away. The worry before was that, in public places, there was no way of avoiding getting too close to random people who could be carrying all kinds of microscopic nasties (I’m recalling my days commuting, standing in a train corridor with ten other people for 50 minutes from Basingstoke to Waterloo, and then packing onto the Tube, jammed up touching against people).
But, on balance, they tell me that it’s safer and more realistic to think of it being at least April 2021 before I can think about getting back out into places where there are more people – after the winter flu season. And the doctors are encouraging. I’m told that it can sometimes take a long time, even if it’s not what they’d want for me. And they assure me that they do expect my immune system to recover to an acceptable level eventually.
The final hurdle into something resembling normality is my revaccinations. All my childhood vaccine benefits have been wiped out, so I need them all again. But without a functioning immune system the vaccines won’t prompt my body to create the required antibodies.
So, I need those cd4 lymphocytes to get a move on!
The one thing they can do is to give me what they call DLIs – Donor Lymphocyte Infusions – also known as ‘top ups’. When donors give their stem cells, some lymphocyte white blood cells are also taken and kept in reserve. It has risks, in that it can cause graft vs host disease (GvHD), so they do small amounts at a time. And I guess that’s because these are actual donor blood cells, rather than the stem cells that are supposed to grow into those type of blood cells. That means that they have been part of the donor’s immune system, and therefore may attack mine. The reason why they can be useful is that it’s kind of a way of stirring up my own B Cells and T Cells to remember what they’re there for! And then they start to self-reproduce.
So, I’m waiting to see whether and when they want to do that with me.
The way it makes me feel
In the meantime, there are hassles related to the length of time this is taking.
Socially, I can be tempted to feel forgotten-about, because I have to be intentional and make an effort to keep in touch with people. And I know I don’t do enough. But I know that I’m not forgotten. That thought is just a trick of the mind when it feels like painting a depressing picture.
Financially, it’s a struggle. But really, it’s an emotional problem – accepting that we rely on kind benefactors and state welfare. It’s the feeling of powerlessness and dependence, that I’m not the one providing and keeping us going. The feeling that I have to justify whatever we spend and why we don’t do things differently, and why I don’t apply for jobs (see later).
And that can lead to thinking, so what am I for? If I’m not earning from work, if I can’t meet up with people, surely my life’s contribution can’t be just to say a few words of encouragement to my kids every day? I seem to spend most of my life on the subs bench.
There are things that could get me down, if I let them… So, I don’t let them!
Disciplines of Contentment
I am still practicing what I’m starting to call “disciplines of contentment”. Most days of the week I spend time being grateful for a whole multitude of things, to the point where I’m embarrassed complaining about anything. I pray. I read the Bible. I monitor the way that I’m thinking and feeling. And I keep myself busy.
It’s occurred to me that, just like with physical health and fitness, mental and emotional health takes discipline and care.
If you’re overweight and unfit, then it hurts when you come to a hill you have to climb. If you’re fit and strong, you can climb Mount Everest. But you don’t get fit and strong by just turning up by helicopter at Base Camp!
Likewise, if you neglect mental and emotion discipline – self-control – and become lazy, entitled, spoilt, arrogant, or you don’t make an effort to deal with your anger, anxiety, impatience, etc, it will hurt when you come to a real emotional challenge. Whereas if you’ve already developed patience, calm, trust, good relationships, respect, etc, then you can climb your emotional Mount Everest when it comes. And that takes a similar level of discipline and care.
The way we talk about “mental health issues” these days focuses on the sympathy and awareness we must have for the real struggle caused by problems with mental health. However, nobody seems to focus on the discipline that can help you avoid many of those problems. And yet, at the same time, we stigmatise those whose physical health issues are “their own fault”, because they should have known not to eat too much rubbish, take drugs, drink too much alcohol, smoke, or fail to exercise.
Now is the time to be good with your eating and exercise habits, not just when the doctor tells you you have heart disease or diabetes. Similarly, now is the time to be good with your mental and emotional discipline, not just when you get into a crisis.
“Some day, in the years to come, you will be wrestling with the great temptation, or trembling under the great sorrow of your life. But the real struggle is here, now… Now it is being decided whether, in the day of your supreme sorrow or temptation, you shall miserably fail or gloriously conquer. Character cannot be made except by a steady, long continued process.” (Phillips Brooks)
What Supercharged Finance means to me
To keep myself busy, I have several projects. There are a couple of writing projects going on, which I won’t talk about, because I don’t want to raise expectations.
The main thing is Supercharged Finance.
Supercharged Finance has taken me well outside my comfort zone for a long time, in lots of different ways. Business and technical skills, such as marketing, video production, social media, web design, and so on, have given me great challenges to get to grips with.
But lately, I’ve faced the emotional side too – doubt and imposter syndrome (fear that someone will point out the flimsiness of my expertise in what I claim to teach about), things I thought I’d got over but discovered I hadn’t.
And I realised that that’s partly why I’ve kept describing Supercharged Finance as my “side hustle”, like I’m just a blogger who wants to make a bit of money out of it on the side. Like I only do it because I can’t do “proper” work. I’ve been kind of embarrassed having a dream for the business, because who am I to portray myself as someone to listen to?
And as long as I think like that, I’m stopping myself being the internet entrepreneur and online-trainer that I really want to be.
So, here’s the crunch. I am not intending to go back to office work as a Finance manager / CFO / Interim Manager / Project Manager / Consultant, of any sort. I am now an online trainer and internet business owner. It is now up to me to turn that into an income stream that is family-sustaining. It’s not yet, but I believe it can be, and eventually will be.
Why there’s no simple solution to my job situation
There are a few people who have put it to me that the current emphasis in society on working from home could work in my favour, and get me an earlier than expected return to work. Why wouldn’t I do that?
So, to explain…
First, the chances of getting a job/assignment where I will never be required, or pressured, to meet people in person or travel to an office (even for an interview), are slim, even if it’s now more possible.
Second, looking for work takes time.
Third, my track record with finding roles was not great even before I had the latest relapse. I spent five months looking for work in 2017, which was financially crippling. It took me four months to find a job after my first redundancy in 2002; ten months to find a job after my second redundancy in 2006; ten months to find a job during the financial crisis of 2009 (then after a month in that job I was diagnosed for the first time with lymphoma and was off work for 18 months).
If I had to sum up why I have such difficulties, I’d use the old saying, “jack of all trades, master of none”. I have breadth, but not depth of experience. I really believe I could be fantastic at practically any role in Finance. But I don’t have long or deep experience to prove it. I’ve done a great job in a multitude of different kinds of roles and in businesses of different sizes and in different sectors. But no-one recruits generalists. When you need a plumber, you get a plumber, not a general maintenance engineer (if there is such a thing) or a handyman.
So, fourth, that weakness in the world of regular work is actually a strength when it comes to thought-leadership and training.
And, fifth, I would have to spend a lot of time doing the networking, the job applications, the talking to recruitment consultants, to look for a job when I am only available for a small proportion of them (the ones 100% home based)… when I don’t have a great success-rate with I’m available for 100% of Finance jobs in the whole of Greater London and the South of England!
So, yes, it is difficult to build a business that makes money in this online training space, especially in a professional context such as accountancy and finance. But finding regular work is pretty difficult too.
And I’d rather spend time creating stuff that helps people than spend my time banging my head on the same brick wall that has confounded me for nearly 20 years. Both options can earn money, but building my own business is much more satisfying.
I enjoy what I’m doing with Supercharged Finance. I love it. It keeps me positive, even when I get frustrated with mental blocks! I’m becoming a little obsessed with it, and I’m not giving up on it!
So, I don’t care who thinks I should go out and get a “proper job” and be responsible and use my energy to earn money from clients. I’m home-based, and an internet entrepreneur. This is me now. Period.
I can fit more future in my brain
Finally, some of you may have picked up a subtle shift in the way I’m speaking. I have, in fact, only just noticed it as I happened to look back on my entry from February. Back then I was frustrated because I couldn’t get consistency in my fitness, stamina and mental state. So, I hesitated to commit and plan very far in advance. Now, I’m starting to make more definite plans further in advance, especially with the business.
That encourages me, because it means I’m closer to a new normal than I might have believed.
There is also a more negative part of me that whispers in my ear from time to time, but I’m not going to give it any airtime.