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.

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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.² 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?

The Diagnosis

An SMT board I designed and built at home

I think I was in third year of secondary school, what we now call year 9. It must have been as my form tutor and physics teacher was the same person.  He was a significant influence on bringing my academic abilities a bit closer to my potential and I shall remain eternally grateful for his contribution to my journey. I went to him with an interesting article I had found in some sort of electronics enthusiasts magazine. It was, for it's time, something of a wonder. A little mouse like contraption that had whiskers and light sensors, driven by two little motors to its wheels with a skid steer action. If one of the whiskers detected an obstacle the motor on the other side would drive in reverse to move away from the obstacle. It also had light sensors underneath so the device could follow a white line on the floor. The circuitry for the time, about 1978, was quite complex and contained both NPN and PNP silicon transistors.

I was fascinated by the circuitry and had gone to this teacher for an explanation of its workings and to see if there was a chance we could build a version. He told me to see Mr Harvey, who ran an after school electronics club. The rest, as they say, is history and Mr Harvey quickly pipped my form tutor to the accolade of best teacher ever, but only just.

Someone else's design, PCB professionally made, populated by me

We never built the mouse, but instead played around with BC108 transistors and light dependant resistors to create magic circuitry. Bistable multivibrators built from discrete components and even progressing to use things like 555 timer ICs¹, which to my surprise are still in use today. Later I became familiar with operational amplifiers, or more often known as op amps. Halcyon days.

During this time I also became fascinated with radio. Superheterodyne receivers, antennas and even eventually transmitters.  Shortly after leaving school I passed my radio amateurs exam and became licensed, class B, to transmit on allocated frequencies above 144MHz with the call sign G6HEF. I never learnt morse code, but eventually the rules changed and I now hold a full licence and can transmit on any of the amateur frequencies.

When lockdown hit I took the opportunity to take my hobby seriously. Being an active person and raising a family, being distracted by beer and the hassles of running a business it had fallen into the category of retirement hobby. As lockdown prohibited going to the pub or walking the fells never mind rock climbing or alpine visits, effort increased significantly to look back at radio for my amusement. It was, after-all, self training for my career. I set up for SMT¹ work at home and started to build various stuff for my hobby.

At first I was very enthusiastic, back in early April. I built various projects including a system to talk to people through a geostationary satellite. However, I became increasingly tired and in some pain. I lost 10kg, lost my appetite and generally felt really quite unwell. I thought I had caught covid, but this continued for some weeks until eventually I knew something else was wrong when abdominal pains became quite intolerable.

I phoned the GP who very quickly referred me to a specialist at the hospital.  Within days I had an appointment for a CT scan with "highlights". I would have been scoped⁴, but covid prohibited that. The scope department was not accepting any patients. I was to be spared that unpleasantness.

My 2.4GHz transmitting and 10GHz receiving satellite system

A few days later, the start of a series of really bad days, I got a surprise call from the scope department to make an appointment for a gastric scope. Unfortunately the poor secretary had beaten the consultant, who had only minutes before ordered the procedure without talking to me. I was upset and shocked and told the woman that there was a mistake, this wasn't what I was told would happen. She said she would go back and check.

Later the consultant phoned me. I had, it seemed, some thickening of my stomach walls and some irregularities to the lining of my abdomen. I really needed to have this scope so they could take some biopsies.

I then got a call from Claudia. The upper GI specialist nurse. By this time I knew that they were suspecting cancer. I told her I wanted full disclosure. She has not let me down in that respect. She warned me that the news was unlikely to be particularly fantastic, but that she would be there for me through thick and thin, whatever happened. She told me I needed a scan of my upper abdomen as anything further up would almost certainly rule out surgical solutions.

I had my gastric scope, twice actually. A word of advice if you ever have a scope. Take someone with you to drive you home and accept the magic diazepam, you will very probably not remember anything and this is the best thing to do. If they suggest not letting you have sedation tell them they are cruel and make a fuss if they even think of not giving you the maximum. Diazepam is wonderful stuff, just don't drive until the next day.

However, if they want you to have a scope, have one as soon as possible, it may save your life. It is quite possible I should have had one a few years ago but was too scared to go. The main reason I was scared was due to people telling me horror stories about the procedure without diazepam. Did I tell you to accept diazepam? Trust me, it really is an awesome drug.

A few days later I went for a CT scan of my chest. Later again Claudia phoned me to let me know that indeed they had found other things and that the biopsy had identified cancer. I needed to see Dr Fyfe urgently so the choices could be explained and statistics quoted. She warned me quite sombrely that things were not at all good.

They had found cancer cells in my oesophagus and my stomach. They identified the primary as being oesophageal but the primary was restricting the proper operation of my stomach as it had grown down over the top. Worse than that it appeared that there were secondaries in my lymph system. I had to admit it explained a lot of my symptoms.

I met Dr Fyfe and Claudia with Sarah my daughter. It was a very serious and earnest meeting. Without treatment I had months to live. The treatment on offer didn't work for 30% of patients, although if you included that 30% the median survival was 12 months as a national average, but 15 months for Furness General from diagnosis, but they were unable to offer any other statistics.

The chemotherapy might well be horrible, they told me. It was a gamble. It would attack my immune system and the nerves in my skin and larynx, might make me feel sick, or even be sick and my hands, feet and gums might develop sores.

Alternatively they could fit a stent and make me comfortable.

Bollocks to that I thought, and probably expressed something along those lines. Having already thought about it a lot it didn't take me long to opt for the chemotherapy.

"When do you want to start?" Dr Fyfe enquired.

"As soon as possible, with caveats" I replied, scared he might suggest today.

"Next week"

It was only Monday, gave me a week to mentally prepare.

"OK"

He left the room and came back a few minutes later with an appointment for the following Tuesday.

I went home to write a will and start the process of moving pension money to a place I could get to it.

I had just turned 55, it was the end of May and I was now very scared about how many more birthdays I would get to see.

The next post will bring us right up to the present day. Will I turn out to be in the 30%? How will I afford to live? Will I be able to continue to work?

What exactly is it like living with cancer?

Once we have these very important questions out of the way we can then get on with more important business.

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¹IC = integrated circuit. A collection of transistors and resistors formed onto a single peice of silicone and encapsulated with connector legs known as pins. What most people know as silicone chips. They do make the job of an electronics engineer easier and is what has pushed the technology to the dizzying heights we know today.

²SMT = surface mount technology. When I first started in electronics almost everything was through hole components. PCBs (printed circuit boards) had all the components on one side and the leads of those components went through holes to be soldered onto the conductive tracks on the other side. Today the wise money, and to be honest even the stupid versions, all use SMT. This is where the tracks and the components are on the same side of the PCB. The components don't have wires, but instead have very short stubby connections that solder onto exposed pads on the PCB. Everything is smaller, more delicate and requires a much more steady hand, good eyesight and fine soldering iron bits. For complex ICs a hot air system is better. The technology lends itself very nicely to automated assembly, but not to ageing long-sighted people like me, especially as I found out after a night on the beers.

³a CT scan with highlights means hooking the patient up to a machine, via a cannula, to inject iodine whilst X-rays are used to image a three demential picture of the patients body. The iodine, being a relatively high atomic mass element but reasonably harmless biologically, helps to highlight structures that would not normally be visible with X-rays.

⁴They wanted to put a camera up my back passage. I've always been somewhat scared of scopes, not helped by some stories people have told me about their unpleasantness. They had assumed the problem was in my lower abdomen due to the precise symptoms I reported.

Electronics is the Solution

Beer is a solution. It is an aqueous solution of various carbohydrates, ethanol, alpha acids and volatile aroma compounds. Beer remains a very enjoyable drink for me but as far as being a solution to my financial needs on balance it has failed to be so. I still enjoy beer tremendously, but must accept it cannot be a career for me any longer.

Time has moved on significantly since we closed the Hardknott brewing experiment. I failed to find a way that I could satisfactorily make money and be able to stand by my aspirations. Therefore, by the end of 2018 it became imperative for me to find a way to make a living. There is a bit of a tale here and I think for the future of my writings I must bring his blog up to date. It is a bitter-sweet story of success and further failure. The future is where it is and I want to leave a positive legacy. I have learnt a lot through the pain of Hardknott, lost a lot of money, but gained significant experience and moved on to a new world. It will take several instalments to bring this blog to the present day.

Around the time we were winding up Hardknott we met a new friend, called Fran, who shared some interests. Fran has become an integrated part of my household and the story really cannot continue without introducing her. She was foolish enough at an early stage to agree to supporting my life-long goal of climbing Mont Blanc, and so it was in the Summer of 2018 that Fran, Ann and I spent 3 weeks in Chamonix training, acclimatising and eventually reaching the summit (4,808 m - 15,774 ft) of the highest mountain in Western Europe.

In the same year it became obvious to everyone inside Hardknott that we couldn't carry on, Scott left to join Fell Brewery¹ and we made the final decision to move on.

I was unsure what the next step would be. Ann had the unenviable job of trying to liquidise our assets whilst trying to minimise our liabilities. In reality the costs of putting the industrial unit back to a point of being able to hand over to the landlord, the ongoing costs of renting the space and all the other overheads was barely, if at all covered by the sale value of the assets. We should really have declared bankruptcy, but due to an ongoing and debilitating sense of altruism that has plagued my business and because I wished for a solid credit rating, we decided to wind up the business cleanly and by paying what we believed we owed.

Meanwhile I set-to resurrecting my engineering career. I set up an electronics lab in the brewery, brushed up my skills with a bit of self-training and updated my CV. It was perhaps at the time a bit of a long-shot. My experience had been significant but my overall skill-set was perhaps a little bit out-of-date.

I applied for several jobs, updated my CV several times until eventually I was successful in an interview and landed a job as an Electronics Design Engineer. It was exactly what I was doing before I was silly enough to buy a pub. In all honesty the only reason I ever parked that career was because I failed to see how I could advance it without moving out of Cumbria. A combination of family ties and my love of the Lake District conspired to instigate a change of direction into the beer and pub industry.

If I can leave one lesson for other people to takeaway it is that although beer and pubs are great, it is hard work and you really need to invest a large amount of money, have a vision that is acceptable to a target audience that is large and accessible enough. Most importantly you must have a ruthless attitude to business to succeed. I may come back to this topic in some distant future time.

I started my new role in December 2018. Between then and COVID lockdown I learnt a lot, made some good progress re-floating my 14 years dead electronics career and was well on the way to being an awesome electronics design engineer. I was back. I was doing something I enjoyed. I had hope for the future and it was looking likely I could succeed in buying a house and saving for retirement. A massive turnaround from the low-point of my previous post.

(Back row, left to right) Fran, Ann and Alfie
(front) Sarah

In the spring of 2019 Ann, Fran and my "kids" Alfie and Sarah went back to the Chamonix valley for a skiing trip. It was largely great fun but among other disasters Fran snapped her anterior cruciate ligament (ACL) very probably due to my poor instructing skills. This wiped out any mountaineering activities for the rest of 2019 while she had it repaired and then started the lengthy job of recuperation. We were really looking forward to getting back to the alps this summer.

Late winter, early 2020 I started to see the exponential growth of COVID in the UK. Seemingly I could see this before my bosses and seemingly even before the UK government. Lockdown was inevitable and was the start of a troubled time for everyone on the face of the planet.

However, for me, during lock-down a further dramatic series of events have left me with serious difficulties and some interesting opportunities. I find myself in a situation that I realise is poorly understood by people who are not in this position and I wish to share these experiences to try and help others who may find themselves in similar situations.

Shortly after the start of lockdown I became ill, at first I thought it was COVID², and that may have also been at play, but it seemed something else was going on, so I contacted the doctor, and things moved on very fast indeed.

To be continued.........

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¹We remain good friends with Scott, who's brewing talent continues to go from strength to strength. Fell Brewery beers are extremely good and very much to my liking. I hope Hardknott has helped him to be where he is today.

²We all had symptoms and later Fran tested positive for the antibodies, so COVID did play a part.