Walk The Black Dog

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  • Death and all his friends

    February 16th, 2005

    I’d got the call I was waiting for, from my older sister. “You’d better come”. It was time. My mum had been fighting terminal cancer since the previous August, over the new year we were waiting for the other shoe to drop. She’d become increasingly frail and had lost a shocking amount of weight. A couple of days earlier – Valentine’s Day, just to twist the knife a little – she’d had a precipitous decline. I didn’t fully understand the biological mechanism, but her failing liver being slowly consumed by cancer (which would go on to kill her) meant she was slowly poisoning herself, most evident of which was the loss of mental faculties. I had been warned she was in a pretty bad state, neurologically.

    I had understood some of this when I arrived in Southwark, but not the extent of it. Leaving the underground at London Bridge and walking to my parent’s flat, a journey I had taken so many times in happier days, I did not know what to expect.

    My sister opened the door. As I walked into the entryway I caught sight of my mum sitting upright in bed, apparently trying to get on her feet.

    Is that my boy?

    The words were feeble and quiet, but It sounded like an anvil dropping to my ears. She was obviously in very poor shape but wanted to get out of bed to meet me, to put on a bit of a show, to let me know she was alright. She wasn’t alright. Those four words were the last coherent thing I would hear from her. For the rest of the day she just looked into the distance, making no sound.

    want to trip inside your head
    Spend the day there
    To hear the things you haven’t said
    And see what you might see
    I want to hear you when you call
    Do you feel anything at all?
    I want to see your thoughts take shape and walk right out

    There was no life in her eyes. This hurt most of all. I remember looking deeply into them to see If I could see any flicker, any remnant of my mum in there (that U2 lyric would be swimming around my head for days. I still cannot listen to that song without thinking of the lonely evening train up to London) I was struck by the thought that his person – my mother – was no longer there; that all she was and ever had been had been taken from me, leaving just this corporeal thing, an empty shell. It sounds dramatic, but I had about 15 minutes alone with her and the memory is still absolutely devastating to me. She was so still and quiet. The slow destruction of a person -a parent – is a terrible thing to witness. In time I recognised this was worse than anything that followed. I wanted to scream, I was so upset, so confused, so absolutely wounded, but I kept it all in, because i was desperate to reach her. For me, this was worse than death; someone stripped of their faculties and their dignity, helpless, frail, and dying. What this disease can take of a person made me loathe it. This woman carried me into the world, and she had been so greatly diminished (she was tiny, tiny by the end) I still wince at the memory.

    She would hang on for another 9 days, before passing away with us all there around 6.30pm on February 25th, 2 days after her 62nd birthday. I think my dad thought she’d held on for it, but I’m not sure if she had sufficient awareness to know either way. I almost had a nervous breakdown during that period, it came out as a bit of a tantrum in Tesco at Surrey Quays, but I was sleep deprived, under severe stress, and starting to crack. I had to get her a birthday card, and it sort of lit the fuse. No, I was not alright. I don’t know if I’m alright now.

    I swore at the time that if anything like cancer happened to me I would not let it go that far, that I would not want anyone to see me like that. I have no idea what that might have entailed. Maybe I would jump off Beachy Head, or go and walk into the sea somewhere, let the waves claim me. I was, of course, completely full of shit, because I would get to find out. Life, as the saying goes, is a bitch. Also Irony when I think about it, thanks Alannis.

    Who said God had no sense of humour?

    Fate would take a run at me. I would get get the disease, not the same kind and mercifully not as severe, although in fact very dangerous. Melanoma is a big, big killer, and I really won the lottery in getting to remission. I may be half-blind, but in all likelihood it’s not going to kill me. Yes I’m tempting fate, but fuck fate.

    Bad days are better than no days

    There’s a sticker that says this at the reception desk at the infusion centre. It made me laugh at the time, because it’s a bit Oprah, but it’s definitely true. it’s easy to retreat into solipsism and self-pity, and I have definitely had those moments (“why me?” Why anyone, dickhead…) but you have to just keep going and be there. It’s a different story when you have a family. You learn to eat some shit and smile, then eat some more. Every day is a small victory. I know that if the worst were to happen to me, my family would be there to the end, and they would deal with everything that followed, because when the time comes, people find it in themselves. Every three weeks I sit down and get 200mg of immunotherapy drugs. The people there always impress me. Some are very much in the trenches with their illness, but they have such incredible spirit. It’s not at all what you might imagine a chemo treatment centre to be. I mean, it’s not cartwheels and fireworks – it’s still a godawful situation for all concerned, for fuck’s sake, but everyone just grins and bears it. For obvious reasons, I’ve a bad association with hospitals – the smell of disinfectant, rumbling air vents, and prospect of death – and I’ve come to realise it’s not like that at all.

    This helped me understand what happened with my mum that day, finding that last shred of strength and dignity to try and show me that she’s okay; that through all she was enduring she would stand tall for her son.

    I recently started to dream about her pretty regularly. The illusion of dreams is that you don’t really question context – “What am I doing here? Why can I fly?” I never question that she shouldn’t be there – although I had those dreams in the past. It’s just normal, she’s alive and we’re doing mundane things.

    The month before she died, I think it was the first week of January, she had a distinct rebound, a period of high function I would learn is not unusual in the course of terminal illness. We had a nice weekend together, we chatted and watched a film (2004’s Collateral) and I thought for a moment that maybe she’s getting better. But it was not to be. Anyway, I mention because that’s how she is in my dreams. Just normal.

    I don’t question it too deeply, but it’s a pretty comforting thing for my brain to do. Her headstone in a quiet hilltop Andalusian cemetary reads “Until we meet again”. I don’t know if that will happen. I don’t know if I believe such a thing is possible, but we’ll see I suppose. Hopefully later rather than sooner.

    LON_0023_1024
    MCT, 23/02/43 – 25/02/05

  • 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

  • Return

    Part 1: Herts and LONDON

    I hadn’t been back for over ten years. I arrived, after 7hrs squeezed into a brutally tight seat with around 2hrs broken sleep, at Heathrow. The customs officer took my passport, scanned it, and said “Welcome home, James” like I’m 007. It gave me a laugh. This wasn’t home, though. Not anymore.

    At arrivals my best friend of some 30 years was waiting for me, and we’d take the short trip along the M25 to St. Albans in his absurd BMW sportscar. First, I’d have to get in the fucking thing. At 6’3″, and not lean anymore, it was comically difficult. Middle age sucks (unless you buy a German sportscar apparently). Leaving the airport and getting onto the roads – England proper – I’d expected to feel something. I didn’t.

    I was in the kind of daze jet travel gives you, little sleep, ~4000 miles, 5hrs time difference, so I was struggling to take it in. I had not been outside the contained little world of the airport since 2014 (although I’d transited Heathrow just three months earlier) but for all that it seemed absolutely familiar. I had forgotten how busy the M25 was, even outside of rush hour. It is dense. Prior to the trip I’d toyed with the idea of driving myself, but it had been too long, and it’s too different, and like anywhere, you have to worry about where you’re going to park for days at a time.

    We arrived at the flat, a place I knew very well, and I was surprised how my memory had failed me; I did not remember the kitchen right next to the living room, even asking if it was new. All of this seems funny in hindsight, I just wasn’t with it, and didn’t realise. This was the beginning of a process where my old life would merge with my present one. In just two days time I’d be in the West End of London, feeling like I’d never left.

    The tradition with my old friend was lots of TV and cups of tea. And so it went. By midday I was sinking into the sofa and thinking I really needed to do something to overcome the inertia, I was flagging, big time. There was no spare room in the flat, so for the night I’d be on the floor. It’s fine, but also means I can’t just crash and surrender to the jetlag. I suggested we go out for a walk.

    We did a couple of miles around St. Albans, taking in the cathedral, and stopping off for a coffee as the blue hour came. This was restorative, and I started to feel normal. I had not, however, let the place in. I felt nothing as I walked familiar streets, even messaging my wife to tell her it was very odd to feel like America was home and this was just some other place. By the end of the week, I’d feel very different. I looked out of the flat’s window, onto the concrete courtyard with the flowerbeds atop the garage, and considered what a familiar view this was. I’d had the same thought many times 2008-2011. It was starting to get dark around 4pm. It seemed early, but I’d just forgotten that’s just how it is at this latitude.

    The evening would bring a few pints in various St Albans pubs, topped by a lebanese takeaway. I slept like the dead.

    In a happy coincidence, my sister lives in the same town. She wanted to take me to a football game; Tottenham vs Man City; her partner’s a season ticket holder and we’d all go the following night. I hadn’t been to a game since Southampton vs. Middlesbrough in October 2011. Not that this was a regular thing for me.

    We took the Thameslink train to London, and the Tube to Seven Sisters. I didn’t know North London at all, but this area feels a bit like Old Kent Road. A bit of a shithole; lots of barber shops, takeaways, litter and scruffy pavement. I didn’t mind it at all. We did a fair bit of walking; this would be a theme for the trip in general. The football ground is spectacular; a gleaming new thing with an amazing hospitality area that yielded much beer and excellent food.

    White Hart Lane

    Walking from the bar out onto the terraces presented that magical vibe of sound and energy. We had great seats.

    Great seats

    I’m not a huge football fan. I didn’t grow up with it, didn’t have that with-dad-on-the-terraces experience. Nevertheless, I enjoyed seeing a game again. It’s the kind of thing everyone should experience, and I was grateful to my sister and her partner for making it happen. We got out of there after 10pm and set off for the long walk to meet an Uber for the trip home. There were pub stops, and I got into St Albans around 0100, my friend waiting up for me. I felt a bit like a kid that had been out at a gig, but I’m 50. I’d been here a day and it already felt like a great time.

    My host had got tickets for Dr. Strangelove at the Noel Coward in the West End. After an easy day of telly and tea, it was time once again to get a train to London. St Albans is only about 20 miles out of town. It’s a quick trip, and the transport infrastructure is excellent.

    We took the overland Thameslink train right into central London. It would be about a mile’s walk to Soho. I had not been in this part of London for about 22 years, but it didn’t feel that way. Time vanished. Central London has an energy. I grew up in it, and I hadn’t forgotten. I grabbed a photo at the junction just after the Thameslink station, as much for my memory as anything else.

    Ludgate

    We were early, so we stopped for a couple of pints around the corner. Soho was packed; it reminded me of midtown Manhattan; the sorts of crowds you see around Times Square. It was also Halloween, and it was amusing to see huddles of people in various outfits. Harry Potter was well-represented.

    The garish rickshaws were new to me, blasting out music as they whizzed past in a flurry of sound and neon. My friend quipped that if he was run over by one of them, I was to tell his family it was anything else.

    Soho

    The play, Armando Iannucci’s interpretation of the Kubrick classic, was excellent. Faithful with some modern winks in the script. We walked back along a much quieter Fleet street, getting to St. Albans in time for a quick pint and a takeaway. It was nearly Friday, and it would soon be time to go to Dorset for the big reunion with some of our old friends. This was the actual reason for my trip, but I’d already made some great memories, and I still had another five days.