Life, as I’m sure you’re getting from this blog, can come up with weird conundrums, for example planning for events that you’ve not been predicted to survive for. This summer so far has consisted of one wedding, two stags, Glastonbury, my Dad’s 60th birthday. Do you pay for these events in advance? Do you kick up a fuss and cherry pick part of the plans? How much planning do you do for them? Do you write the best man speech in past tense?
As the months went on it was clear I would be alive to make the events, but then my physique has deteriorated due to the relentless steroids. So ironically they caused me some worry, despite being grateful that I could attend at all. The immunotherapy has kept things stable for now; this is despite not having had any for two months due to the effect it has had on my liver. This does not seem to be improving anytime soon.
The events I was most worried about were Glastonbury, Matt’s stag and James’s stag. (in that order) I’d been dreading Matt’s stag to be honest, despite being best man, I’d elected to hand over the arrangements to George, due to poor health. The problem being, the event was in Edinburgh, and involved a 10 hour coach journey, a whiskey tour, white water rafting, plus typical stag do frolics. I don’t drink, I’m registered disabled, not a very good swimmer and my muscle mass is a tenth of what it was. I follow various melanoma Facebook groups and one message stuck with me. It was from a fellow male patient who felt he was a bit of a “weirdo” or “gooseberry” at these events. I’ve not had this feeling fortunately, I think partly because I’ve been so open about the diagnosis people just know. So when I flatly decline alcohol it doesn’t come across as rude.
Tentatively I had an idea of how to make the whole weekend easier and safer for me. After four emergency admissions to hospital you start to have doubts, particularly when you’re not feeling well. So what I thought was to be an awkward chat with Matt wasn’t. I wanted Dave (my twin) to come along to basically keep an eye on me. I was happy to pay for him to do so and he was more than happy to attend a stag. It turned out Matt had been worried about the whole thing too and independently had come to the same conclusion.
My only job for the stag was to organise getting everyone to buy ShiteShirts or a suitable awful alternative. Everyone obeyed to this apart from Nick, who I assumed hadn’t because of his need to always dress well, in fact it was a Facebook error and he wasn’t getting the messages.The coach actually left on time from Matt’s flat in Leytonstone, six of us were on the coach most of the party were joining us at Rugby. Ten hours later and we were in Edinburgh at “Kick Ass Hostel” it was a very nice hostel, complete with a decent bar, free pool and laundry. Having spent a lot of time in hostels over the years this was up there with the best of them.
We quickly got ready and went to the whiskey tasting, something I would have loved in the past, but now it was just unwanted temptation. I was offered to drink some and spit it out but that seemed like a start of a slippery slope that I did not need or desire. Next was food, anyone who has been on a stag do will find restaurants and bars can be quite obstructive, due to the large group of males, despite lots of men willing to spend a lot of money. A long time later we found a pretty decent restaurant of fusion food. I had some fish tacos followed by a Brownie slider (a chocolate Brownie sandwich) it was delicious. After that we went back to the hostel bar, played some drinking games and got merry. Well I drank orange juice and forced the groom to drink. The rest of the party went out but my night ended there.
The next day was white water rafting despite feeling much more able than I’d been for months, I was worried about my risk of drowning, so Dave and I plus another member of the contingent, went for a tour around Edinburgh. On the tour bus the mellow tones of an Edinburgh local surrounded us, we’d chosen well we had a proper tour guide. We went round the whole city then got off at the the national museum. After that we tried to go to the castle which was far too busy, had a drink on Victoria Terrace and then went back to the hostel for a nap and to wait for the rest of the party to get back.
The night out followed a similar, pattern food and then a pint. I left after that as by then I was seriously fatigued. Then crashed. Waking up to them coming in at 3am or so and a big drunken hug from the groom. After breakfast we got the bus back.
The second stag do was for my friend James Manning who has now eagerly tied the knot to the lovely Nichola at the weekend. His stag was in Sheffield and activity filled. Fortunately Dave and my brother Paul were both invited, so again I knew they would be there to keep an eye on me. The accommodation was very rustic and clearly had seen better days. It was an old climbing centre. We got there before everyone else did and due to traffic they were very late. En route to the pub,which was a mile away, I realised that it would be very dodgy going back in the dark, so I pulled out and went to sleep.
The next day started with a Zombie apocalypse. It was good, moving around an old warehouse trying not to get bitten. I informed them of my medical condition and ended up getting along very well with our instructor, who was wearing a pink breast cancer band in honour of his wife who underwent 6 months of chemotherapy for that very cancer. The staff were very sympathetic to me sitting down randomly, our captain was reasonably impressed by my reaction speed at shooting one of the Zombies, I’ll put my fast reflexes down to a positive effect of the dexamethasone.
After that it was three hours of go karting. Two sets of 10 laps, followed by three separate finals. I was relatively useless at it but I didn’t come last overall. Following that, it was quick turnaround back to the accommodation to shower and out for a curry. After the curry I hoped the bar would be conducive to chatting but it wasn’t, the “Bierkeller” an authentic Bavarian experience, was nothing near that. Everyone was standing up on stools and tables, which were soaked with beer, singing to what I call “end of the night songs” e.g. Hey Jude – by the Beatles, something I would have embraced if I wasn’t at reasonable risk of falls, particularly after such a tiring day. Paul drove us home and we woke up the next day. We met Georgie for lunch in the sun in Leicester, she’d been to a wedding, and then after dropping us off Paul headed home.
Overall both stags were very enjoyable weekends with a good chance to catch up with old school friends, meet the rest of the stag parties, get to know the parents, and reminisce about Leicester Medics Rugby Football Club. It also showed that I could do it.
Then there was Glastonbury, which I knew was going to be a tough one, I had hoped we’d made it easy enough for me. We had elected to glamp in Worthy View Campsite, and I’d arranged for disabled passes around the site.
I even said to Georgie that it would be 50% probability that I couldn’t make it a fortnight beforehand, then we also thought, due to her recent hospital admission, it was likely she’d had the same probability. Again we tempted fate and on the Monday after I published the last blog about Georgie’s sepsis, she woke up not feeling well again. She went to placement on painkillers despite feeling faint with severe abdominal pain. After her day on placement she went home, despite being next to A&E and went to bed. It made me think of the day before I was diagnosed, when I was at work, that you can be quite ill in hospital but feel strangely isolated from it and don’t feel that you can tell people you are ill because you’re too busy putting other people first and helping them. Georgie got worse and fortunately two of her housemates were in. They took her back across the road to A&E and she was assessed again for another bout of sepsis and admitted to a surgical ward to a different hospital in Leicester. The treatment she got was slow, tedious and inadequate. Despite having a temperature of 38.9, a fast heart rate and raised white cell count in her blood (if you remember from the last blog this is systemic inflammatory response syndrome) and a likely infection, so Georgie was septic, despite this she was just given painkillers initially and told not to drink or eat. It took almost eighteen hours before she was commenced on antibiotics… I’ll stop there, because her treatment makes me so angry, especially compared to the treatment she got in London. It goes to show that people’s awareness of sepsis still isn’t good enough.
Anyway Georgie didn’t end up leaving hospital for three days. Glastonbury was that weekend, we really wanted to go even if it meant turning back when we got there if it turned out to be too much. On turning up to Glastonbury everything went reasonably smoothly but it was obvious the mud was a big concern. Dave turned up just as we got there and we got a shuttle bus around the site to our campsite. We sorted our things into the tent, had a nice cup of tea and then headed into the festival site. Unfortunately, the slope down, and obviously back up to the site was really really steep and long. It was far from ideal for a wasted cancer patient and a not long ago septic patient. We got down to the site fine and started to walk around but really this was no better. Glastonbury is very very busy, plus it was an exceptionally muddy year. There was lack of any places to really sit down and when you stood for too long you got stuck. We saw Bastille as the sun was setting, which was excellent, then we tried to get to the pyramid stage, en route Georgie and I found a bar to sit in and realised how exhausted we were. We took an hour and a half to get back to the tent sitting when we could. Georgie was having some abdominal pain and I was very very shattered. Due to my wasted calves and foot muscles my wellies rubbed atrociously and I already had blisters and sores on my calves. We got quite cold sleeping, plus Georgie needed a wee and the toilets were further than I had hoped, (probably not quite the glamping experience Georgie was expecting, but it was all fun and games and made her laugh that I was woken up to take her to the toilet in the pouring rain at 3AM).
In the morning we woke up in a storm, we both looked at each other and we felt trapped. The sun came out and we wandered around the campsite, before it got busy. In the peaceful moments of the morning Glastonbury was fascinating. We went to get a cooked breakfast in a teepee , and we people watched, including two guys who’d not been to bed yet and one of whom was literally incapable of moving from the cafe back to his tent. We then got a smoothie and gazed over the Glastonbury site on a bench. By then I’d already made the decision to be “evacuated” and Dad came and collected us later that day. Overall we’re both very glad that we went, we saw and we tried. But it was too much and would have been dangerous to stay there. I had visions of me falling over in the mud and lying there “until someone did something about me”. Not so secretly, Georgie was perfectly happy to get back to my parents house in Bristol, with a warm shower, close clean toilet and watch Adele and Coldplay on the TV with my parents. We could have stayed longer, if I’d managed to secure the disabled campsite (I was too late) and it had been less wet underfoot, but overall we’ll be sticking to either day festivals, nice B&B’s, spa hotels and of course the weddings.
Luckily my Dad was able to collect us from Glastonbury and at my parents house we had a thoroughly nice time. Dad pressure washed all our stuff, we laid down for a nap and realised how exhausted we both were. We did a bit of shopping on the Sunday, including a new case for Georgie and got a coffee and went for a curry night.
The funny thing is I wasn’t disappointed and actually loved the 24 hours Georgie and I were there at Glastonbury, it was proper teamwork from the both of us, we had a chance to soak up the feel good atmosphere and we got out before we put ourselves at risk. It really is a miracle that either of us could be there. It is weird to accept that there are things you can’t do but that’s life. We cut our losses at the right time and had an excellent weekend regardless.
There are a few things which aim to improve the lives of disabled people. I have tried to make use of the perks that you’re given, the fabled Blue Badge was very helpful on James’ stag do for example. I have a London “Freedom Pass” which gives me free bus and tube travel. Lastly the benefits are keeping me afloat too. The times I’ve asked for a seat on public transport, people have readily obliged, usually more than one, without batting an eyelid. But there’s definitely some simple things that could be done to improve the lives for the frail and disabled. Would it hurt to have benches on every tube platform? Or more benches everywhere? The tube unfortunately was woefully underfunded for years and many of the stations don’t have step free access, but surely more of the staircases could be converted to escalators?