It’s been more than 2 weeks since I last put finger to keyboard, and a lot has happened; so here goes my attempt to encapsulate the beautiful, awful madness of it all.
After returning from Calais, I was exhausted, physically and emotionally, but Chemotherapy was looming, and there were things that needed to be done in preparation.
So, on Monday my first was a visit to the Dentist. My Dentist went private several years ago, and there are no NHS Practices taking patients locally, so I’m stuck. As a result I only visit biannually. However, several weeks before one of my back molars had broken; it was no bother, but with the risk of Chemotherapy induced neutropenia, and potential subsequent abscess and sepsis, a visit was required. I had the tooth pulled (saves a lot of bother later) and the rest cleaned and polished, leaving me £285 lighter, but reassured my smile was brighter.
Next, was Bucket List item no. 2. The Children wanted a tattoo unique for our family, designed by me. I was not at all sure what to do, or where to go for inspiration. Luckily I did a night shift with the lovely Aylisha, who had lost her sister just a few years before. We discussed family tattoos; she’d got one in remembrance. I explained that we all wanted to get the same design. She showed me several Ambigrams, of which I had never heard. They are designed to read as two separate words, within one, depending which way you read them. I then spent several days scribbling away until I had a design we were all happy with.
So the deed was done. I went to Woody’s Tattoo Studio in Wycombe on the Thursday, following a morning dose of Immunotherapy. Again, the tattoo had to be done, so that it would be healed before Chemo commenced. 20 minutes, and I had our Bailey/Family tattooed on my left forearm.
Two weeks later and the children followed up with theirs…
Almost before drawing breath, Friday arrived, and Bucket list no. 3. A pub crawl around the 9 remaining pubs of Thame. Several weeks before I had put an event post on Facebook, inviting friends and family to join us, but expecting that there would be just a handful of us. Why a pub crawl? To be honest I’m not really sure, other than the fact that I haven’t done one for at least 30 years, so why not?
My Brother Mike arrived , having flown in from Delhi for a long weekend; accompanied by his son Oriol, having arrived from studying in Bologna. Both unannounced, and a wonderful surprise. They were joined by my sisters Fi and Sally, from Macclesfield and Bristol. Our house became a wonderful chaos of hugs and chatter, tears and laughter.
All started gently enough in the Falcon, an old railway inn, opposite the old Police Station. Quietly disturbed as our group grew from a handful to about 20.
Campaign and Dance friends were joined by those of Abbie, Hattie and Jacob. Half an hour and we strolled to the Cross Keys. A beautiful hostelry on the corners of East and Park Streets, which has a microbrewery behind. Small, but warm. Our numbers grew to about 40. The boys were already enjoying themselves, having to down drinks in quick order. I however, remained sober throughout, under strict instructions from the Specialist Nurse that I was not to drink ‘much’ (I had a pint in the first pub, and a whiskey in the last).
It was at times like herding cats, but my leadership was, of course, impeccable and impossible to ignore. Half an hour in each pub was what I had allotted if we were to be successful.
On to the Swan, a pub and hotel, unfortunately in reduced circumstances, but warm and friendly. We began to fill and empty every tavern as we moved like Ethanol locusts, leaving the regulars wondering what had just occurred.
Then across the road to a taproom which I have never frequented; The Old Nags Head, a pub not patronised by many, it turned out. One old man asked when the door was going to shut, we just kept coming. No card reader and the barmaid looked at us in horror, unable to move until her friend agreed to help her out behind the bar. Plenty of room for us here.
Down to the Birdcage and things were beginning to get messy at hostelry no.5, and the chatter and laughter increased in volume. We were joined by more local friends; it was a heady mix of youth, age and experience. Former teachers and pupils slurring vocabulary and telling of mis remembered adventures…
Crossing the High Street, we entered the James Figg. Named after an C18th pugilist, and home to the First Thursday Music Club. It has a pig on the roof, and a Moose Head above the fire called Eric; enough said. It was here that a serious felony took place; all Christmas hats disappeared from their designated residence, appearing on the heads of our half cut fellowship (for this is what we had become). Josh and Lee the outlaws responsible. Here is the evidence…
At this point it all became a lot looser and the group began to drift apart, my commands falling on inattentive, easily distracted, ears. I gave up the shepherding of felines, and the core group moved down to the Rising Sun before the Rozzers arrived.
The ‘Riser’ is famous for its Thai menu and pub quizzes. Things became so dysfunctional, the obligatory selfie was now impossible.
On to The Thatch, a really wonderful pub and restaurant, notorious for being trashed by David Cameron and Boris Johnson’s Bullingdon Bully Boys, back in the 80’s, under it’s pre nom Thatchers.
Time was moving on and we’d fallen significantly behind schedule. Jacob and I decided to see if the last pub, the Six Bells, was serving. It was after 11pm. We got there to discover we were 2 minutes before Time. We got the drinks in and took a couple of sips, before congratulating ourselves on being the only ‘crawlers’ to complete our task, and leaving to rejoin the others.
Our group was reduced to about 12; the outlaws were busy stripping the pub of Christmas decorations, with which they adorned themselves and any one passing. We retired to the world famous Atalay Kebab Van, where farewells were said at 0130am.It turned out to be pretty legendary, and not to be forgotten, or repeated…
On Saturday, Mum and Dad came down by train and we all travelled to visit Abbie and Lee’s new house; then to go and visit Ann, Bill, Mum’s Brother, and Steve. A lovely afternoon.
Mike and Oriol returned home on Monday, and our house went from a noisy, clattering, hive of warmth, back to it’s whispering normalness.
Thursday I went in for my fourth Gastroscopy. I had been finding swallowing more difficult for the previous week, and was finding even liquids difficult at times. At work I hadn’t managed to take a mouthful of food without it immediately getting stuck, resulting in me spending my break with my head over the porcelain.
The Gastroscopy result was better than I could have hoped. The Oesophagus and Duodenum were clear. No spread…
For those who remember, I had a date. It had taken a while to organise, but we met on Friday, and I had a lovely day getting to know someone very adorable. We’re meeting again very soon.
Saturday came round again, and I was visited by Maria and Danielle, my militant Nurse friends from London; famous for NHS campaigning and being vocal, strong, intelligent women. Unfortunately I was not feeling at my best, and after going for a meal I literally had one mouthful of soup before having to get to the bathroom. But these girls are a tonic (of the Gin kind) and lifted my spirits (see that?) enormously; both patient and caring.
It snowed heavily overnight and we woke up to find the coach they’d planned to catch home, cancelled. We went into town for Brunch with Hattie and Louis, and then met Jacob walking Murphy. All of Thame was out, building snowmen or trying to sledge down ridiculously slight inclines, especially the Dads. The girls eventually went home by train, once the roads had cleared enough to get them to station. I then went onto my first of 3 night shifts, working in Children’s A&E.
Work have been magnificent. Since my original blog about my diagnosis I haven’t had to go into any long explanations, but have received lots of kindness and many, many hugs. The Senior team have supported me in any way I’ve required, sometimes at short notice; this has made a massive difference, and meant I haven’t had to worry about my job. My last night was my last shift, for a while at least. I booked a week of sickness to follow the first session of Chemo, to allow time to adjust to any side effects. This is followed by a week off for Christmas, then a return to Occupation Health, to determine how, and when, I get back to work.
There was the obligatory selfie, before my goodbye…
Wednesday afternoon, and Sarah and Trevor arrived from Grantham. I met Sarah about a year ago, on the Victoria Derbyshire programme, debating the NHS. A great friendship was formed and Fighting 4 Life Lincolnshire have joined us in Oxford, and London, fighting the defunding and privatisation of #ournhs, locally and nationally. Another afternoon of love and laughter.
And so to finish. Thursday was C Day, and I was very apprehensive. This is the medical equivalent of my skydive. Pumping Cytotoxic chemicals into my veins, and the potential side effects, is something I have had to come to terms with. I have no choice. I have to trust science and my medical and nursing team, in the same way I did my instructor. Jumping out, not knowing what the result will be.
Hattie took us into the EPCTU FOR 0830h. Bloods were taken, and the usual weight and urinalysis. I’d lost another 2.7kg. A starter of Immunotherapy was administered…
I was given a pre med of Dexamethasone (steroid) and Ondansetron (anti sickness).
Would I tolerate the intravenous Oxaliplatin? It’s a drug given over 2 hours. The side effects include Laryngeal spasm, when cold air causes an inability to swallow, stomach pain and dizziness. Longer term side effects include Neutropenia (knocking out the immune system), reduce platelets (increasing risk of bleeding) and anaemia (low red cells). It also causes peripheral neuropathy (leading to painful, numb fingers and toes) making it difficult to do fine tasks; this is usually temporary, and triggered by cold. It will be given every 3 weeks.
I’ve only had one of these side effects thus far, the peripheral neuropathy. Even with gloves on, my fingers burn and become useless outside in the cold; I get a similar sensation in my mouth drinking anything cold, but These sensations go once warm again, and 2 days in, I feel I have got off lightly. So far, so good. The only other issue was that toward the end of the infusion my arm became tight and painful, and when touched felt like Rice Krispies, going Snap, Crackle and Pop! Though still tender, this pain is resolving.
Following this I was given TTO’s and a complicated medication regime of oral Ondansetron, Metaclopramide (another anti sickness tablet) and Dexamethasone. These are only given for the first 2-3 days, but I was also dispensed Capecitabine, a tablet form of Chemotherapy 1150mg twice a day. Not to be handled, and to be swallowed with water from a glass kept separate from those used by the family.
The potential side effects are the same as for Oxaliplatin, but with added hair loss, including eyelashes (usually after second cycle), headaches, sore eyes, and cardiac problems – cardiac failure, DVT and myocardial infarction.
I’m still in free fall, eyes wide open…