45 pt. 2

Eyes

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.

Beavis_Butthead

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.

surgiclvwound
Wound and drain line

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.

Black May

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

45

December 27th, 2018

On the morning of my 45th birthday, I stood before the bathroom mirror’s harsh, yellow light, looking at a lump where my armpit should be. I’d felt something under my arm in the shower, a bulge where the hollow of my armpit is, the ‘axilla’ as I would learn to refer to it. The lump was alien enough to be worrisome. When I lifted my arm up, the raised spot looked like half a tennis ball was stuck under the skin. It was soft to the touch, and at that moment, painless. Happy birthday, James.

I showed my wife, who immediately looked concerned, “That looks like a lymph node, is it hard? You should get it looked at”. I had no intention of doing anything that day, I think my exact words were “I am not going to the fucking doctor on my birthday.” I resolved – unwisely, in retrospect – to wait and see. Dr. Google said If it got any bigger, harder or didn’t go away, I should go and get it looked at. When? Who knows. This was really the stupefying cloud of denial and fear, leading to poor decisions

What the hell is wrong with my eyes?

Earlier, around Late September, It had become apparent something was abnormal with the vision from my right eye – the good one – in that a little patch of my visual field had a distinct blur, as if there was Vaseline smeared on it. This got bad enough that I was worried the retina was at risk of detaching (lottery-like odds of this happening to both eyes) but a trip to the eye doctor revealed absolutely nothing unusual, and It felt better – a good example of white-coat syndrome, as I would later realise. A bit like the way toothache stops in the dentist’s waiting room.

As Autumn receded and Winter started to take hold, I realised my vision was not improving, daily tasks like driving were becoming difficult – depending on the angle of the sun and cloud cover, It could be very difficult to see clearly. In January, I had a light bulb moment: Could these things – this lump and my sight – be related? I was starting to feel the first nips of panic, for such a condition could potentially be very serious. Did I have a big, dangerous cancer hiding somewhere? Was I already too late? It was strange, because i felt absolutely fine. The only physical symptoms I had were the lump and vision problems, which is fairly bad, I suppose. I hadn’t been ill for months, and I always got colds in Winter.

The end of the beginning

I couldn’t get a doctor’s appointment until March, and this was hardly a job for a walk-in centre, so I resolved to go to the emergency room. It was January 29th.

Medical staff are careful not to give anything away, but they don’t always hide their emotions that well. On lifting my arm up, it was clear from the ‘ohs’ and ‘whoas’ I should have got it examined earlier. I got a minor telling-off from a nurse to that effect, and the doctor, whom I swear was barely a day over 20 informed me I had to have a CT scan, the first of what would be many.

…soft tissue material likely represents a Rokitansky nodule
related to a mature teratoma. The lesion measures 10 cm
craniocaudally…

Jesus Christ, 10 fucking centimetres? Teratoma? Big relief, that’s just a harmless, big ‘ole fatty lump. I get a referral to a surgeon and am sent on my way, hugely relieved. I would need to have it removed, but that’s no big deal, right?

Not so fast..

My ‘surgical consultation’ was with a typically brash but professional general surgeon who promptly went on to scare the shit out of me. He told me that he did not want to operate until he had a biopsy, as he was concerned it was lymphoma. Lymphoma is not a word you want to hear, and I had already persuaded myself this was not serious. The Biopsy came round a couple of weeks later, and I reported back to the hospital to have it done. Essentially I had a local anaesthetic and then the physician’s assistant uses ultrasound to poke around with a huge needle to identify and capture some samples. The first thing that happened was I started leaking, so the fluid had to be removed. In totals 225cc of reddish/pink stuff was drained out; the swelling all but disappeared, like a deflated balloon. I left with a warning that there is a risk of infection, and to be watchful. That turned out to be an interesting bit of foreshadowing. Meanwhile, my arm felt normal for the first time in weeks. It wouldn’t last very long.

The biopsy results came back as inconclusive, by now this wasn’t surprising, and this pattern would repeat for some time with my eyes, too. Nobody seemed to have any idea what the hell was going on.

It would turn out that my case was ‘rare on top of rare’, to quote one doctor.

A frightful referral

The surgeon called me, and casually notified me he wanted me to see an oncologist. I knew full well what that meant. I was worried sick. The appointment would not be for two weeks, plenty of time to tie myself in knots. In the meantime I had undergone an MRI to try and get to the bottom of my eye problems, and that had a neutral result too. Whatever was going on, it was not in my brain, thank God.

Infection

The biopsy site got infected on the day I had to see the oncologist, of course. This doctor was a mild-mannered Indian chap, and he was not able to tell me much I didn’t already know, outside of the fact a gang of them had discussed my case at a ‘tumour board’, which sounds like the shittest party ever. They only knew that it wasn’t a teratoma, because those don’t grow this fast. I would need another scan and lots of blood work. The proposed scan would be a PET, and would be six weeks later. This wait was important to ‘allow things to settle’, inflammation from the biopsy could produce a false positive, but more on that later.

The infected site responded almost immediately to antibiotics, but would continue to leak. My wife, ever inventive, devised a dressing using my youngest son’s diapers (much to his annoyance – “you stealin’ my diapers!”) And I continued like this – changing it twice a day – right up until the lump was excised. It leaked a ferocious amount, my morning routine involved pulling off the dressing which would typically be a bloody pulp after soaking through the night. There was a distinct relationship between pain and the volume of the mass, as it filled with liquid, it got painful, so the leak was a blessing in disguise as it relieved the worst of the pressure.

PET time

A PET scan involves being injected with a radioactive tracer; essentially it measures metabolic ‘uptake’ of the solution. Cancerous cells absorb this solution at a significant rate. The bottom line is the radiologist gets a 3d image of the body, and can pick out hotspots of high uptake.

The scan was straightforward, it takes about 20 minutes after a 40 minute wait for the solution to be metabolised. I would have to wait to see my oncologist for the result.

Late, in the oncologist’s office the flat-panel monitor showed the images from the scan. Scrolling through the cross section with the mouse wheel, the Dr. indicated the mass under my arm lit up like a stadium in a sea of dark greys and browns. The high absorption rate was pretty clear; a child could read it.

FINDINGS:

…intense metabolic activity within the relatively large and

lobular malignant appearing mass of the right axilla. The mass

contacts and possibly invades the lateral margin of the right

pectoralis major and minor. Soft tissue infiltration extends from the

mass to the skin surface at the upper right breast with high

metabolic activity at the skin surface,,,

‘Malignant’.‘invasive’ These were words I expected but I had not wanted to read. I still had inflammation because the axillary mass was by now permanently agitated in a cycle of muscular stress, draining and re-accumulating. There was a chance this caused the high-uptake indication.

There’s a paradox when you are unwell and nobody knows what’s wrong with you. You want a diagnosis, no matter how bad, because there is then a way forward. When I had the MRI, I wanted something to be found, despite the fact that this could only be very bad news, and felt despondent when no abnormalities were found. By the time it looked increasingly obvious I had some sort of cancer, I was – in a small way – relieved. I knew what I was facing, what the fight would look like.

Oncology were still a little puzzled, because none of their blood work had shown the slightest trace of anything unusual. This would set the tone for the invesigation that followed. little about this would be straightforward.

The Doctor quite memorably summarised “We don’t know precisely what it is, but it should not be there, and it needs to come out, sooner rather than later.

It did not appear to have spread anywhere, which is a huge bit of luck. I just had to wait for surgery.

Around this time, the leak stopped, and the pain started to become significant. The mass was also harder, feeling more like a waffle of pulpy tissue than a hollow sack. My proposed surgery was three weeks in the future. I was not convinced the mass would wait that long, and I still wasn’t getting anywhere with my eyes.

At this point all I reallly knew was that i very likely had cancer, and was possibly going blind. I was otherwise perfectly healthy; 2019 was going to be great.

To be continued