One of my photos

January health update

February 1st, 2019 · Posted by Skuds in Life · 2 Comments · Life

I know I said that I don’t intend to bang on about my experiences with cancer, but will indulge in the odd update for those who are interested.

The story so far (TL;DR version): after increasing difficulty swallowing I got diagnosed with having a cancerous tumour in my oesophagus. Various scans confirmed the diagnosis and established the extent of it, by which time a diet of soup had already made me shed a couple of stones in weight. The good news was that it hadn’t spread too much and was treatable by having an operation to cut out the tumour, along with a section of oesophagus. Before that I was to have some chemotherapy to stablilise and reduce the cancer. So how has it gone?

The chemotherapy was to be three cycles of a combination of drugs. This involves a day of being drip-fed two of them and then three weeks of taking the other one as tablets. As swallowing was a problem I disolved the tablets, but as that results in the nastiest-tasting thing in the world, I pumped the stuff through  feeding tube straight into my jejunum rhather than drink it.

The first cycle of drugs was OK. After the initial nausea wore off, which took a couple of days, I started to be able to swallow more solids. It was a thrill to be able to have a croissant and go back to actual Weetabix instead of Weetabix drink. I moved onto mashed potato, and in early January had a belated roast turkey Christmas lunch. I spent a lot of time being tired, but didn’t have most of the other side-effects I was warned about. OK, so I did collapse on Christmas day and have to go to A&E by ambulance, but apart from that, things were good. By the end of the first three-week cycle I was excited and looking forward to similar improvements in the second cycle.

I had a session of physiotherapy and was all set to join my local gym to get myself strong for the operation, and then fatigue really set in. I may have picked up a bug from somewhere, but even without that I was just too tired to do anything. By the time the second cycle ended I thought I was feeling a bit better, but then I had the blood test and consultation the day before, as usual. When they saw the blood results it turned out that my neutrophil levels were dangerously low and the hospital decided to postpone the final cycle by a week in order to give my body a rest from the drugs. The idea was to give me a chance to recover a bit, but instead I picked up a rotten cold and spent the entire week feeling wretched. The night before I was due to go back for another blood test I was freezing and shivering, still bunged up with a cold, and feeling faint whever I stood up. We did go back to Guildford anyway, but were not surprised when they suggested further postponing for a few days.

The good news is that my blood was back to normal, so it was just the heavy cold causing issues. I dread to think how I would have felt if I had continued with the chemotherapy drugs. I suspect it might have killed me. The bad news is that some of the other side effects have kicked in, like the sore fingers and hair loss. It is hard to tell when you normally shave your head anyway, but I noticed that my beard is a bit patchy and some body hair is a bit more sparse. I also had a setback with eating, finding it impossible to manage some things I could eat in mid-January.

Jayne and I are just frustrated because the break in chemotherapy means the final operation and (hopefully) complete cure will be delayed and we just want it all to be over. Next week is a decision point. Either I resume chemotherapy, delay by another week or they decide to just stop it – which would then bring the operation a bit closer than it would have been but without as much pre-op treatment as planned.

Just to add to the stress I realise that I am now dependent on specialised drugs and a hospital with lots of EU and non-EU on the staff just at the point when Brexit kicks in, and I am selfishly hoping that we do not get a no-deal cliff edge just when I am at such a crucial point. Shortages of staff or drugs would not be ideal. I will be a bit upset if I die for the sake of ‘taking back control’! Fortunately I can’t eat much so food shortages would not be too much of a worry, and I have enough Fortijuce to feed an army for several weeks.

It is not all bad though. I have started being able to get more ambitious with eating. In the last few days I have managed pain au chocolate,  cream crackers with Brie, and a mexican meal. I still have a rotten cold but after a few days of Lemsip it is starting to feel like it is on the way out.

Best of all, I can now wear the West Ham shirt Jayne got me for Christmas 2 or 3 years ago. It was one of the special one to commemorate moving from the old Boleyn ground and she had it customised to have my name (“Skuds”) on the back. Unfortunately she didn’t notice that the size was S and it looked like a child’s shirt compared to my overweight and technically obese body. The other day I tried it on and I could get into it!  Since last year my neck size has gone from about 18″ to probably 16″ or less. My waist has gone from at least 38″ (I was buying 40″ in suits just in case) to 34″, and everything is hanging off me so I have bought a few things that fit the smaller me. Just a couple of cheap pairs or chimos and a couple of shirts so far.

The other benefit of losing so much weight is that my sleep apnea is a lot better. I don’t snore as much and can even lie on my back without getting my breathing obstructed. It all makes me look forward to feeling a whole lot better once the cancer thing is fixed. I am still planning to relaunch the new Skuds v2.0 once I recover from the operation, and he is going to be phenomenal. And he is going to pass his motorbike test and get (probably) a Suzuki SV650 and look damn good in the small leather jacket he got for Christmas.

I have three days to shake off this cold and then the big decision next week about whether to resume chemotherapy or not so everything is still looking good, even if there is a bit of uncertainty about timescales just now. I won’t pretend it has been at all pleasant, but the prospect of a full recovery makes it asier to take the unpleasantness.

One change is in my willingness to share what is quite personal information. I have always been quite private about anything to do with my body, but every time I set foot in the hospital they are always asking so many questions: how do you feel? Have your bowels moved? Soft or hard stools? How are you sleeping? What have you eaten? and so on. It has got to the point where I have been asked the same things by so many people that if a casual acquaintance asks me how I am just as a greeting I have to stop myself giving a detailed description of my last dump. I imagine that even Cambridge Analytica woukd say that was too much information.

Having got that off my chest I will now shut up about cancer for a few weeks at least.

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