Wednesday 5 August 2020

Living with cancer, chemo, lockdown and work

Moving from a position of being self-employed to working for someone else is something of an adjustment. Going from having control and responsibility of absolutely everything to having little stress but cow-towing to the organisation takes a little personal adjustment. Of course, having gained a job in a role that excited me and that I found enjoyable eases that quite a lot. Never-the-less it is an adjustment that I had been warned may be tricky, that warning was heeded and in the end I thought I did rather well.

Times of difficulty shows a lot about a person and an organisation alike. My huge experience across many fields of engineering, business, academia and an analytical mind brings a powerful but debilitating sense of overview; the straight jacket of employment restricts the full use of that experience. As COVID unfolded I took an interest in the statistics and knew that something huge was happening. When in an organisation where I was not part of the driving force, and clearly wasn't ever going to be, it is not a surprise as to what eventually happened.

As COVID hit, despite being able to help my employer find the solutions, I was simply furloughed. As this whole thing unfolded, it has occurred to me, by looking at many different inputs from both people I know and wider business community, the businesses that didn't simply take the handout, but worked out how to maximise on what could be a powerful opportunity, are the ones that are coming out on top.

My graph from the official Government figures.
I've added a rate of change trend.
If above 0 on the right hand side cases are increasing.
It doesn't take an idiot to see we are heading for further lock-down.
I haven't mention BrewDog for a while. I have to admit that possibly one of my biggest business mistakes was to look too much to them rather than finding my own way. I could also be disgruntled on a personal level about the leg-up I gave Equity for Punks in the early days, but now seem to be ignored by James, but I still drink their beers regularly and visit their bars when I can. One cannot ignore the powerful business success that is BrewDog and I am fairly sure I am now vindicated for seeing how brilliant those guys are at business. The reason they are brilliant is because every disaster is turned very cleverly into an opportunity.

I'm going to give a huge shout-out to my friend Andy Mogg at LemonTop Creative. They used to do all the design for the bottle labels when we ran the brewery. I'd have sent more work his way had we managed to be able to afford it.To this day I worry if actually we'd have done better if we sent more his way. It's a business consideration. Can you afford to do something, or is it a case of irrespective of the cash, can you afford not to do something really important.

From the business point of view of my employer I disagreed with my furlough and that view has become much stronger in hindsight. Despite furlough, I decided that to ensure my skills were improved and for the good of my mental health, I embarked on improving my "shack"1 and built electronic stuff. It is what I do now, and I'll do it even if I cannot make money from it.

During furlough the isolation was difficult to cope with. There was no communication from my employer which I found difficult and from my perspective irresponsible on their part. I was naturally concerned about my long term employment. To add to that I lost both my step-father and my father to COVID both within a very short period of time3.

This was all happening as I was becoming ill and investigations were underway to find out what exactly was going on. By the time I got my diagnosis I had probably already come to terms with my situation. Of course when faced with impending bad news finding excuses that might explain something more benign keeps a sense of positiveness, but when eventually I was told I had cancer it was no surprise at all. The initial prognosis was a little bit of a shock, but we, Ann, Fran, Alfie and Sarah were determined to be positive and I have these people in particular to thank for their help.

That positiveness perhaps shocks people. It is interesting at first that the overall feelings are something quite third person. It is almost as if it is happening to someone else. Numb, some people might say, but I find that description far too simple. As best I can describe it is an emotional out-of-body feeling. This does mean that telling people creates much more shock and upset in the person being told than it does to me. Unfortunately there isn't an easy way to explain to someone that you have cancer, and I apologise to my readers if these writings cause any upset.

I have promised triumph and disaster. You may be wondering where the triumph is. Don't worry, it is here, and it's going to be powerful if I have my way.

It starts with my first round of chemo. Obviously I was scared of the chemo. I was scared of the potential side-effects, but equally I was scared of the cancer too and of how I might die. More than that I was becoming annoyed at having my life plans taken away from me. I have a bucket list and much on it requires me to be fit and well and to be so for a number of years and to work hard at having the money to do so. All of that has been taken away from me. My immediate cause of concern though was that if the chemo didn't work, or I wimped out, I'd stand a chance of my oesophagus closing up and not being able to eat. This was certainly more scary than the chemo, because at the end of the day I had been given control.

"Can I stop it if I want at any time?" I asked Dr Fyfe.

"Yes, any time you want. And if I think it is not doing you any good I'll stop it" he replied.

I felt a sense of relief having only just agreed to going ahead and knowing that helped me through the next week waiting for the start.

"In fact if you just want to go off on holiday you can pause it if you like"

Just being in control improved my sense of dread. To hell with it then, I am going to get through. This chemo has to work, or at least I have to give it my best shot.

So the following Monday I had some bloods taken to make sure I was healthy enough. I also had an ultrasound cardiogram. I was declared well-fit and quite ready to be poisoned. By the Tuesday, whilst still very apprehensive, I was also as psychologically prepared as I think it is possible to be for such a thing.

They filled my blood system with a set of drugs. It took about three hours or so. There were some immediate side-effects, namely tingling in my fingers, mostly when my hands get cold. Keeping warm helps that a lot. About a week in I found that there was some nausea, but I found chocolate helped that. Drinking cold drinks for the first week isn't really possible, so sadly beer is out.

I found that other than that I felt good. I was going for long walks, going for a run, although much more than 5k seems to be difficult and generally I get along with life.

I had been getting disturbed that I hadn't heard from my employer other than seeing my furlough money go into the bank. I wanted to prove I could get back to work. In fact it became quite important to me to prove that part of my life-plan was not dead. I decided to email the management with ideas and perhaps some truths that might have been too brutal. I genuinely believe I was giving sound business advice based on experience that was broader than the current team could possibly understand.

I had also become quite aware that cancer is defined as a disability and my employer must make reasonable adjustments to allow me to be able to work, so I threw a few ideas into the pot about that. No reply. I became concerned that come the beginning of August I might be out of a job as my employer would become liable for some of the costs of me being on furlough. Added to that I had become convinced that they could fail to see how useful I could be to them. I still wonder if I was too bold, or perhaps not bold enough.

Meanwhile the pains in my abdomen subsided and my appetite started to come back. I started to put on weight and felt better than I had since around February, and thinking back perhaps at any time in 20204.

"It's probably just the steroids" Claudia suggested when she called me a few days into my first cycle "They reduce swellings and kick-start appetite"

I had told her to be truthful with me, and at that time it was clearly right to make sure I didn't get too excited. I was on a course of 4 days of steroids initially to help reduce nausea. It is true they do add a bit of energy and at the start of the second cycle, when my first dose of steroids are given IV, but on that occasion in the afternoon, I was wired in the evening. Claudia's comment was a bit of a knock-back.

As the cycle progressed my condition continued to improve. I came off analgesia completely and could eat without any problems at all. Indeed it turns out eating is the solution to preventing nausea in my case. I was becoming hopeful, but aware of Claudia's reservations.

My bloods just before cycle 3.
Still OK apparently, but they have deopped.
Just before the start of cycle 2 we met Dr Fyfe again. The mood was tangibly up-beat and very enthusiastic. I was asked how I felt and I reported that I really felt fit. The almost headmaster-eque Dr Fyfe of the first meeting was replaced with someone who seemed rather more excited about my progress than I was. Indeed he almost seemed like that little kid who was suggesting the rather naughty thing that had gotten you in front of the headmaster in the first place.

"The full results of the biopsy shows that it isn't TIPE2 which means it isn't aggressive"

At least I think that is what he said5. Sarah and I tried to understand the technical implications of this after the meeting, but as Dr Fyfe seemed excited we decided that it was good news anyway. We enthusiastically agreed, that naughty Dr Fyfe and I, to carry on with the poisoning.

So, good news from the hospital, carry on with chemo because it is obviously working. I felt great and wanted to go back to work. Surely no news from my employer must also be good news. I was getting bored and anyway my radio construction projects were costing a lot of money and I can't afford not to work.

As August approached I knew something would change regarding my employment. So it was then my employers HR officer, who had perviously been furloughed too, phoned up to make an appointment to come and see me. Perhaps it would be about making reasonable adjustments due to my disability. Perhaps I was to be made unemployed; surely not, that could be seen as discriminatory.

But unemployed was indeed what I was made.

Ah well, onwards and upward. Just need to sort out my pension then.

Then I have plans, lots of them.


1A Shack is the room, or shed, or other dry and preferably warm place where geeky radio people like me hide from their XYL and harmonics.They are places where huge amounts of ingenious creative activity occurs, its just that once observed that creativity looks a bit like pissing around to avoid the washing up or watching a romcom romantically on the sofa.

2In radio talk YL = young lady, XYL = Wife or significant other. Harmonics are the smaller inconveniences that occur if you accidentally leave the shack and go to bed while the YL or XYL is still awake. Harmonics are generally an inconvenience in a transmitter output but can be considered useful if deliberately generated before filters if frequency multiplication is required. Harmonics of both the radio and organic type often cause QRM, or unwanted noise and should be attenuated at every opportunity. I refrain from commenting on any QRM that YLs or XYLs might generate.

WARNING, running a YL and XYL at the same time in close proximity can generate IMD, which can be most unpleasant.

3As the terrible situation unfolded my step father ended up in hospital. He seemed to have some sort of infection as far as we could tell, but not COVID. Initially before lockdown we were permitted to visit, but I was fairly sure, looking at the statistics, we should not have been allowed. On the one occasion we did visit the ward was crowded and it was clear to any idiot that it was a potential hotbed of infection. It is not appropriate to chart his medical journey, but as lockdown happened and he potentially could have been getting better he contracted COVID and sadly passed away.

Meanwhile my father was in a home. He has not been well for a number of years and as his health deteriorated it is questionable as to whether he had any quality of life. This is contradicted by the fact that when visiting him it was still possible to get a smile, even though he became a shadow of the rather eccentric, outspoken, infuriatingly stubborn but lovable man that he was. He too contracted COVID and died the day before my step father's funeral. Thankfully we did manage to bury him at Wasdale Head Church and we, his sons and grandchildren, are very happy we could at least do that.

4The side effects of the chemo were significantly less inconvenient than my cancer symptoms had become and so it remains, even as I now brush up this post I am into my third cycle and typing is a little troublesome with the tingling. There is also some trembling in my hands, which only lasts a day or so, but is inconvenient. After about day 7 I become quite well and very able to do almost anything, save for COVID issues, a permanent PICC line that needs care and risk of injury or infection due to dropping blood cell counts.

5We haven't been given any new statistics. I am assuming I am well out of the 30% risk zone. I am assuming that because my health is otherwise very good and my bloods, whilst dropping, are holding up, I shall have improved chances over the stats. I am coping with the chemo very well and keeping up exercise, which Dr Fyfe says is of benefit. I'm also not that old. Who knows?


Sheffield Hatter said...

Yeah, that's tough about the job, but perhaps not a huge surprise given your relativley short time with the company and their lack of response to your overtures during furlough. But good news about the chemotherapy - I hope it continues to amaze your consultant, who sounds pretty amazing himself.

Keep on keeping on.

Thurston McCrew said...

Mate - I don't know you from Adam but I've drunk your beer and anyone who makes beer as good as you made it has every reason to be proud of his life.
I hope you make more beer.
If it's anything as good as your positivity faced with what has been thrown at you it'll be like drinking angels' piss.
Keep writing.
Keep writing.
Keep writing.