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The C word that doesn't rhyme with Hunt!

Once upon an April night I awoke to a terrible pain that ran from chest to abdomen and doubled me up in an excruciating knot. The ambulance crew were lovely and did their best to console before taking me along to the dark castle of Watford General Hospital. The pain dissipated as I sat for an eternity in the waiting area, and when I explained the incident to the doctor there, he really didn’t have any great ideas as to what may have been the cause, simply advising that I call my GP should the problem reoccur.


Several days later the pain returned so, as advised, I booked a telephone chat with my own doctor. She put me on a course of anti-acid tablets which seemed to keep the pain at bay most of the time, but by the end of the course, the problem was still very much there – quite random and unpredictable. The agony, when it came, would last around four or five hours and left me unable to concentrate on anything much other than feeling distinctly sorry for myself. If it happened in the small hours, I would watch clips of Kurt Cobain discussing his own abdominal woes as I had read that he suffered similar ailments for quite some years before finally being offered an effective medication. I would imbibe chamomile tea and Panadol and suffer in silence until the pain dissolved.


Day of the Dead selfie


Next step was an ultrasound scan to see if that would reveal any malfunctions within, and whilst it still shed no light on the cramping condition, there was something else that showed up. This thing was sitting on my left kidney and concerned the docs enough that they booked me in for a CT scan to take a closer look. The CT scanning machine was like some 70’s sci-fi movie prop – weird and slightly scary. First thing the nurse there said to me was ‘so are you a musician?’ – I’m still not sure what the clue was – do I just exude some kind of slacker-punk aura? She was sweet and said I should invite them all down to a gig sometime.


Next thing I knew I was summoned to Hemel Hospital for a specialist appointment – August 17, 2022. The chap I saw was smiley and had a calming disposition, as he gently explained that they thought it likely that this discovered growth was a cancerous thing. There it was, the dreaded C word. I listened and nodded and smiled. I wandered out in a mild daze and took a stroll to the Electric Umbrella Musical Instrument Emporium before sitting outside Café Nero with a cortado.


It's a strange thing when it happens and not so easy to explain, but in that second as you sit and hear that word, everything changes – this subtle shift in the way you see and think about the world – doubtless imperceptible to any stranger’s gaze, but conscious and kind of peaceful. I had a feeling that whatever transpired, this was something that would remain.


I was booked in for an MRI scan two weeks later – just to confirm suspicions. The MRI was even more 70’s sci-fi and even scarier than the CT – isolated in this thick metal tube with a soundtrack of industrial noise and an android voice that tells you when to breath and exhale. The same nurse was there, and I told her about the wedding gig we’d played and the set at Hertford Museum Garden for Musical Mystery Tour – she chastised me for failing to invite them along.


Hospital selfie


Twenty-Four hours later Justine and I were in Valencia. This was mostly wonderful, though sadly the abdominal pains re-emerged with a vengeance – I think exacerbated by the heat and dehydration - so our planned end of week trip to Madrid was jettisoned and filed away for another time.


Valencia


Back in England a pre-op assessment awaited – passed with flying colours - and then another appointment with my specialist, though this time back at the dark castle of Watford General where it was confirmed that their suspicions were indeed correct, and a date was set to remove the cursed kidney. I was hooked up with a Macmillan Nurse and given all kinds of preparatory literature, explaining the procedure and process in some detail. Things were getting a bit real.


One of the things I found most difficult was the idea of telling anyone else of my predicament, so I pretty much didn’t. I had to tell someone at work – and felt stupidly emotional on the phone. In general though I kept discourse to a minimum and rarely mentioned the C word – rather just explaining that I had to have a kidney out but wasn’t too concerned as I had another one of those.


I got on with getting on as the days ticked by and then the night before we were due to play a Los Chicos Muertos gig in the garden of The Farmer’s Boy, pain and fever and cold shakes descended. I’d almost forgotten that Covid was still a thing, but there were those two red bars and no mistake. I’d been particularly looking forward to this gig and it was depressing having to cancel. I did manage to find a couple of fine replacements to fill in for us – Laura Dannan and The Peace Lilies – before settling into the self-isolation world of my daughters’ old bedroom. Other than the initial blast of weirdness, my symptoms were pretty mild, just like a regular cold, so I continued to work on my laptop, programming acts for upcoming events. It did occur though that I was somewhat up against the clock. If you’ve had Covid in the week prior to your operation then you must report this, and that could mean delaying the operation, which was now just fifteen days away – oops. Fortunately, with eight days to go, I tested negative and emerged from my isolation hibernation – phew!


On October 14 we went to watch the Bowie documentary Moonage Daydream at our lovely local cinema The Odyssey. A sweet relaxing evening just letting the music and visuals wash over along with a bottle of red. There seemed to be a lot missing from the narrative, but I guess that’s the problem with trying to encapsulate such a well lived life into a couple of hours. Afterwards we stopped by The Horn and dissed the covers band over a couple of nightcaps. Back at home we listened to the new Pixies album and Sean dropped by – one of the few friends I’d tipsily divulged to – which was sweet.


Monday it was back to Watford General for a final blood test and a call from the docs asking me to do another Covid test – just to make sure. This was negative, so all fine for Thursday.


Watford General Hospital


7am, Thursday, October 20 I got admitted into Watford General Hospital. There were 3 others in the pre-op waiting room and it took a while to go through admission forms, final blood pressure tests, another covid test and a chat with the assistant surgeon before being led to one of those beds on wheels and given my hospital gown. I placed my clothes in a bag next to my overnight stuff, lay down and awaited the nurse’s return. It was probably just ten minutes, but felt longer, I just wanted to get it done now. The nurse was gently reassuring as she unlocked the brakes on the bed and said “OK, let’s get you over to theatre”. It was quite a long journey through the stark lit hospital corridors and that vista of passing ceiling tiles and strip lights was reminiscent of so many movie depictions – I kind of liked it. A posse of green gowned professionals awaited in theatre, and they immediately started setting up the tube in my arm for administering the anaesthetic. They were smiley and friendly, and I felt calm about the whole thing – in good hands. Within moments one of the nurses said “OK, we are going to administer the anaesthetic now” and then I just heard a few voices, “sleepy time”, nighty night”, and I was gone.


The next thing I knew, I was opening my eyes in a whole different room with this softly smiling, slightly camp fella looking over me asking “Hello, how are you feeling?”. This was limbo land – where they check you are all OK before moving you to a regular ward. If heaven was a real thing, I guess they’d have something similar, to make sure you were ready for that last transition. It was all a bit dreamy, and I don’t remember much detail, but I know we chatted for a while, and I was reassured that the operation had been a success. He asked if I wanted someone to call my wife, which I did (apparently the head surgeon rang Justine and let her know all was well). I already had a drip and a urinal catheter fitted and another tube attachment in my arm for administering antibiotics and stuff – all things that would usually freak me out a bit, but I guess I was still pretty dosed up, so it didn’t really bother me, next stop, Cleave Ward.


Hospital wards are funny places. I’d managed to mostly avoid them, other than visiting loved ones in there when required. I got placed in bed one of an eight-bed section; all beds occupied. I have immense respect for all the staff in these places – dealing with folks who are obviously not at their best – distressed, ill, in pain, scared and sometimes angry. They handle it with dignity, humour and total professionalism, even at the end of a tough double shift.

My fellow inmates were a mixed bunch and to be honest most seemed in a worse state than me. We didn’t really talk, just nods of acknowledgment. The only fella I really communicated with was in the bed opposite. He had, I suspect, both a learning disability and some mental health issues along with a condition that placed him on a highly restricted diet, which he hated. He seemed to cope with his lot by almost constantly reporting out loud all that was going on around him, interspersed with desperate pleas for fish and chips or sandwiches. He seemed surprised when I answered one of his observations with some idle chat, but I managed to get him to smile a couple of times which felt like an achievement. There was an interesting character over in the corner who was often loud and angry and quite rude to the staff – including some racist comments. Nobody knew quite how to react – he was obviously in desperate pain sometimes and contending with epilepsy, a physical disability and a bitter demeanour that was eating him alive. The nurses remained courteous and professional with him throughout.


Watford General Hospital


Life on the ward was pretty much just medication, blood tests, blood pressure, food (which was fine), drink, sleep repeat – this endless rotation – as you sit and pray for release. Justine and Emelia (wife and daughter) dropped by during visiting hours both evenings which was a welcome spell of normality. We had a good game of hangman, and they left me the current issue of Uncut magazine for diversional reading material. As my blood pressure was a bit low, they kept me in two nights, and I was so relieved when they allowed me to leave on day three. The one life-tip that I picked up during my stay was that if you can possibly avoid the experience of having a catheter removed from your dick, I would urge you to do so at any cost!


I can honestly say that I had completely underestimated the required need for convalescence and recovery following a significant operation. In my head I thought I’d be back in action within the week, but back at home it quickly dawned that the suggested six to eight weeks recovery period was likely to be pretty accurate. Just putting on socks or traveling from the sofa to the kitchen became an ordeal that involved pain and patience in equal measure. Despite this realisation, it did feel good to be home and to at least be able to start – supported by a healthy supply of codeine - down that road.


Two weeks into recuperation I was able to make it around the block with the aid of a walking stick. My blood pressure had returned to normal and the nurse at my GP’s had advised that we could remove the dressings from my op-wounds should we wish. I was still on four Panadol and two codeine tablets most days but at least felt like I was inching back towards some kind of normality.


Three weeks into recuperation and I was able to start writing some new songs, getting the creative muscle back. I’d also received a date for my endoscopy (sticking a camera down my throat), to see if that would shed any light on those original abdominal troubles. It’s not a procedure I was particularly looking forward to, but felt positive – like maybe all in all I could get back to relatively decent version of myself by 2023.


A month into recuperation and I was feeling pretty low. Having cut out dairy for some weeks without one of the abdominal attacks, I suddenly had another that lasted the best part of a weekend. As well as the physical discomfort, it affected my mood as there was so much going on in the outside world that I should have been enjoying. There was a charity DJ night for Herts Young Homeless that I’d been involved in facilitating, and our annual St Albans Christmas Cracker street party, that I programme the music for. Over in Hitchin there was a weekend of memorial celebration for our friend Mark (The Astronauts) who passed away some months ago – all I could contribute was a little video of one of Mark’s songs, recorded from the sofa. Beyond the door was rock ‘n’ roll and Christmas lights and there I was with an inflamed intestine, unable to sleep and just watching videos and photos of real life, feeling a little sorry for myself. I did some more research online and decided that the next thing to try was to cut out gluten – maybe that was the poison. The prior week my friend and (Skull Puppets) bandmate Bruce had popped over and we ran round some songs over a drink or two which did feel wonderfully like inching back to life – I was just so impatient and fatigued by this seemingly never-ending ill-health.


Lonely and Loaded - recorded for the You're All Weird celebration of Mark Astronaut


A week later I had a little commission to accomplish which gave me a creative muse for some days. My friend Liz who runs the St Albans for Refugees charity had asked me to come up with a little song to accompany their online pre-Christmas advert, aimed at countering some of the recent nasty anti-refugee rhetoric that had emerged. It was good to have a project, and one that I felt was achievable from my recuperation sofa. Once I had something worked out, I arranged to go and record the track with Dez (our Los Chicos Muertos bass man and home studio aficionado). Dez’s partner Al (also a dear friend) came and picked me up and swooped me over to Hitchin for the afternoon session. It was my first time beyond the environs of St Albans for many weeks so felt good. Dez added some double bass and trumpet to the track, and it sounded good. Liz was very happy with it, so mission accomplished.


The St Albans for Refugees Christmas Advert


We had arranged a little soiree to celebrate our Silver Wedding Anniversary in early December, and as this approached, I felt anxious as to whether I might have another gastric attack of just a general downturn in health that might scupper these plans. The gluten-free diet seemed to be working out, but it was still early days.


The day before the get together I had an appointment for the endoscopy, back over in Watford. I’d heard a few horror stories about this procedure, but I was hopeful that this might shed some light on things or at least eliminate some potential ailments, allowing us to move forward with diagnosis. The nurses and the specialist were all fun and upbeat, explaining everything as we went along and ensuring I felt calm and comfortable. I went for sedation (we know a song about that) rather than just the local anaesthetic spray, and to be honest, hardly noticed anything that was going on until it was completed, and I was wheeled round into a little bay to recover. The specialist came over and said that they hadn’t picked up on anything too worrying, perhaps a little inflammation of the stomach wall, and that I’d be able to chat over the results with my GP in a week or two.


The next day I awoke feeling relatively OK, and bar a little last-minute anxiety, ended up being fine for the Silver Wedding celebration. We had invited friends and family to join us in the back room of one of our lovely old St Albans pubs (The Goat), for some music, pizza and merriment. Our friend Mary picked us up and drove us along, so all I really had to do was sit and chat with folks -which was lovely. My old friend Clive (Product) had flown in from Berlin and I even played harmonica on a couple of tunes when he performed (my first live performance in several months). It was lovely to catch up with folks, and thankfully didn’t have to spend too much time chatting health issues. Back at mine afterwards, we passed the guitar around and shot the breeze and for the whole evening I was back in relatively blissful gonzo life.


The following week I rang in to arrange a telephone appointment with my GP to discuss the results of the gastrectomy and chat around next moves – hoping that I could maybe get a test to check whether I might be celiac. The earliest appointment available was in the new year, due to them being seasonally overwhelmed – frustrating, but hey-ho. My general post-op condition was still one of slow steady progress – aches, pains and fatigue still very much the everyday norm, but in my head and heart I looked towards 2023 with some genuine hope.


As an extra Anniversary treat, we spent a couple of nights in Oxford just gently mooching around. We had a hotel room with a small balcony overlooking the Theatre on George Street. From there, the Christmas Market was just a few minutes’ walk, as too was The Ashmolean Museum and the Covered Market. It was lovely break, enjoying mulled wine in the crisp cold evenings and managing to find some great gluten free food in local restaurants. The gluten free thing still seemed to be working out though at times it was still tricky to diagnose what aches and pains were post-op and which might be intestinal stuff. Despite the close proximity of everything, I was still getting quite fatigued after short walks and at times found my balance a little tested. Driving back on the Sunday, the countryside of the shire counties was heavy with frost and something of a magical winter wonderland.


View from our Hotel window in Oxford


It will be Christmas next week and I feel like I need to draw a curtain on this chapter – pick it up again in the new year. I’m searching for a resolve, but there is no obvious marker-post or station. All I can say of today is that I feel not too bad, just mild abdominal grumbles and an annoying mouth ulcer (not sure if that’s the change in diet or the copious drugs passed that way). I slept for about nine hours, some days it can be closer to eleven. My cheek bones and rib cage are more apparent than they were - cancer chic (there, I said the word). I have things in my (Faber & Faber Poetry) diary for 2023 but truth be told I’m still not sure if I’ll be ready for them. The fatigue is a daily thing and just walking around for an hour leaves me pretty wasted. Maybe not too bad is all that can be expected right now. I’d like to be more zen and tell you how each day is a blessing, each moment to be cherished but I struggle to attain that sense of wellbeing sometimes. I’m enjoying the snow through our back window, wandering in the garden to take a few photos. Most afternoons I sit and read with a mug of herbal tea – Jack Kerouac, Henry Rollins, and most recently John O’Connell’s Bowie’s Books. I plan to record a little festive sofa song this week., and maybe next week I’ll try and get on a train and just wander round the South Bank for an hour or so – it’s silly and simple things one misses most. So not too bad is where I sit, aiming towards getting there – hey-ho!

See you on the other side.

Grae J.

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