By March my vision had continued to deteriorate to the extent I was becoming quite afraid. I made an emergency appointment to try and figure out what the hell was going on. I got a visit with an ophthalmologist that just happened to be a retinal specialist. She is French, had only been in the country a few months, as luck would have it, she was absolutely brilliant.
Generally speaking, nost of the senior female medical professionals seemed better listeners, and thus far I wasn’t convinced I was being heard. My wife describes this as a ‘specialist trap’, in other words if a doctor can’t diagnose a problem, they become indecisive and fail to advocate for the patient. You must see the right people. The right doctor at the right time makes all the difference. In the US system in particular, you must learn to stamp your feet. It’s very hard for me, as I am a classic British never-complain type, but when you’re really sick, that attitude can kill you.
This particular specialist took complete ownership of everything, and the more difficult the case got, the more interested she was.
I had some images taken of the eye, and she immediately identified inflammation of the nerve bundle behind the retina. This is generally known as posteriour uveitis, and it’s potentially very serious.
I had to undertake a lot of tests, includng tuberculosis and syphilis,(symptomatically similar) which amused me (yes it came back negative, you shits).
I ended up being prescribed an oral steroid (prednisone) in a shock dose, tapering off as time went on.
Steroids do odd things, it felt to me like I was highly caffeinated; I couldn’t sleep, put on a load of weight (yay!) but avoided going crazy -Apparently some people don’t respond well to them.
My vision stabilised, you wouldn’t call it good but at least it wasn’t getting worse. Uveitis is idiopathic in about half of the cases. In simple terms, it it not known what causes it. At this point it was purely hypothetical that my vision problems were linked to whatever was growing under my arm, immunology is complicated and requires highly specialised domain knowledge, there isn’t a magical test for it. The test is basically ruling out everything else.
Tumour won’t wait
The mass under my arm was no longer leaking, had fully re-accumulated, and was now starting to press on surrounding tissue, which caused pain. Around 1am on the 3rd of Aoril, I realised I could no longer sleep. Heat, painkillers and and ice-packs did nothing. I remember sitting on the bed in front of the wardrobe mirror thinking that I have to do something.
My wife had a continuing concern that it might burst, which could be life-threatening. My plan was to go to the ER, perhaps they could drain it, or at least get me some pain relief.
The emergency room reception wasn’t busy, a TV played one of house-hunting shows where a couple have an incredible budget. It was set in Fareham, just a few miles from my previous home, which made me laugh at least. I got triaged quickly. The feeling of the nurses – rarely hesitant to give an opinion – was that this thing needed to be out. No shit. A young doctor told me she couldn’t do anything invasive as if it was potentially malignant as that could be harmful. so, no drain. In the meantime she saw me wincing with pain and suggested an analgesic. I got a long lecture about opioids “You’ve seen the news, right?” And then they injected something with a long name into my IV
It felt a bit like the drop off the lift-hill on a rollercoaster, I actually held on to the sides of the bed, I felt a kick of nausea, thought I might throw up, then it passed. I was now, to use the medical term, as high as fuck.
The doctor got on the phone to the surgeon (I think it was 3am) and got it done – I would be operated on the next day. My bed was moved to a remote end of the ER and I entertained myself sending Beavis and Butthead gifs to my sister.
I don’t really know why, when you’re stoned everything is funny. It had to bag up my clothes and belongings and put on a gown.
Dark, dreamless sleep
I got visited by the anaesthetist, who explained that I would be asleep through it all, and a reflexologist, as the surgeon was concerned my nerves were getting damaged by the tumour, but this was luckily not the case.
My abiding memory of ‘serious hospital stuff’ is the flourescent lighting scrolling overhead as you are moved on a stretcher,that and the smell of alcohol swabs and the chirp of ringing telephones. The operating room actually resembles a hotel kitchen, lots of stainless steel, aluminium, and dark tiling. Only the huge overhead lights set it apart, and large pieces of equioment that go ‘beep’. I had to move laterally onto the OR bed and had my inflatable stockings switched on, which feel a bit like a python constricting around your shins. That’s all I remember
Waking up from a general anaesthetic is abrupt, it sounds like people are shouting.You wake up with a start, It’s such a deep sleep. I wasn’t aware of any pain, but my armpit felt like it was completely gone, which was weird but also a relief. My treat was a cup of crushed ice. I hadn’t eaten in about 17hrs.
I spent a night in the hospital in a very pleasant room, and stood up for the first time in hours. I had a drain fitted, which is a plastic line from the surgical wound terminating in a rubber bulb.
This fucking thing would be the bane of my existence for a week. A fwwnurse ran in and told me if I needed to urinate it had to be into a plastic flask about the capacity of a litre. I filled that fucker to the brim, handed it to her and said “enjoy”. She didn’t even smile- heard it all before, I expect.
The surgeon visited and instructed me to monitor the drain, as he did not want it in there any longer than necessary, as it’s an infection hazard. He also explained the surgery was a success apart from having to leave some tissue which had tied itself around a vein. This would cause almost 5months of discussion as nobody seemed to think anything should remain in there, given how fast the tumour developed, but that story will have to wait.
At home, I had to learn to live with the drain, which was a great annoyance as the slightest pull on the tube was sharply painful. I had to sleep on my back (which I never do) so it was a tough few nights. On the very day I had just got used to it, I made the appointment to have it taken out.
It would be many weeks, and several labs before the tumour’s classification was known. In the meantime my oncologist wanted to discuss options. At that time it was possibly some radiation therapy along with some chemo. Great.
I had so many appointments in May I lost count. I’d had my drain and stitches out, my oncologist informed me that the mass was classifed as a ‘metastatic melanoma of unknown primary’ in other words, skin cancer, but no skin lesion would ever be found. This supposedly true in 10% of cases. I had the feeling the onvologist was not that convinced, but genetic markers gave him treatment options. I would be put on immunotherapy, which had the reputation for miraculous results.
I would require immunotherapy every three weeks for a year. I watched an educational video about chemo, and I mostly learnt to be grateful I wasn’t having chemo. The treatment building is a squat, brutalist structure near the mall. It struck me that nearly all of the people there looked very worse for wear. I asked the nurse if they looked like me when they walked in, but I don’t think she saw the funny side. </p
To be continued