THE NEW NORMAL #33 – THIS TOO SHALL PASS

This post is a little bit backwards so if you haven’t watched Memento then buckle up for the ride. Driving home today, at the end of my second dose of immunotherapy treatment, I managed to tune in to my favourite Friday afternoon film review programme (Mark Kermode and Simon Mayo on BBC Radio 5 if you’re keeping tabs) and they were interviewing Tom Hanks ahead of the release of his new film, ‘A Beautiful Day in the Neighbourhood’. Aside from Hanks’ unerring ability to pick a good film and his soothing, deep vocal tones, I’ve always found the man who brought Woody to life (oo-er missus) to be the kind of calm and reassuring personality that you always wished to have in your life.

Towards the end of the interview, Mayo and Hanks discussed words of wisdom that would help us all through these troubled times and the presenter offered up his co host’s words, “Everything will be alright in the end and if it’s not alright then it’s not the end”. I loved this – it applies to films and, hopefully, life too. Hanks, like the absolute pro he is, parried this wisdom back with four simple and beautifully delivered words; “This too shall pass”. Hanks elaborated, “if you’re having a low day, a crappy day – this too shall pass. If you’re on top of the world, having the best day of your life – this too shall pass. Life evens out like a big ol’ bell curve so just take it as it comes”. If ever I need to hear something on the radio on the way home from a long session in the chemo ward, it was Tom Hanks telling that this too shall pass.

Now, before people start sending in postcards of concern about my wellbeing, I must confess that some of this was my fault. My appointment was at 9.30am and I had fully intended to take some food with me but in the flurry of school runs, making it to the hospital on time and dropping in a prescription at the pharmacy, I completely forgot. This meant that I spent six hours without food or drink because a) I forgot to bring anything and b) I am apparently incapable of asking for help. Sitting for six hours isn’t exactly strenuous but the impact on your body and mind of having all those drugs pumped through your hand and into your system is pretty serious so by the time I got out I was shaking pretty vigorously. So much so that when I got to the pharmacy to pick up my prescription and tried to take a sip from my hastily purchased bottle of M&S water (sorry environment) I ended up liberally sprinkling the guy in front of me in the queue like the winner of a low budget go-kart grand prix.

Prior to this impromptu soaking of a stranger, I had spent my time in the chemo ward playing a game. The game is called ‘Try Not to Listen to all the Conversations about Cancer’ and has a bonus round of ‘Don’t Look at All the People Who are so Visibly Sick’ – I’m getting quite good at it. I read the front and back of my blood test order form, I watched Wednesday’s Match of the Day on my phone and discovered a new sketch show on Netflix (The Astronomer’s Club, not bad). Nevertheless, as I worked my way through the levels of this game it got harder and it was almost impossible not to notice the teenager opposite me sat with his dad in a scene of depressing familiarity. Then there was the old couple where the husband was attending his last chemo session but complete with iPad, Ear Pods and a sense of resolve that was humbling. Finally, there was the family next to me with a father who was attending his second session of chemo with his wife and teenage son in attendance – I tried not to see that as a vision of my future but that thought wormed it’s way in as the words ‘GAME OVER’ flashed up in front of my eyes.

Earlier on in my visit, I’d listened (as had been requested by a number of friends, readers and colleagues) to see if there were any more fantastic conversations to be had – and the cancerous people of Plymouth didn’t let me down. First, there was holiday advice which ranged from “Keep to the touristy bits if you’re going to Costa Rica, there are some right dodgy types there” to “The Grand Union Canal was the most romantic place I’ve ever seen – the mist and the sunrise were beautiful”. Up next there was actual medical culinary advice for those suffering with mouth ulcers (a common side effect), “try dipping fries in to a McFlurry or a smoothie – it’s quite popular on Instagram”. And then there was the discussion in the waiting room between two ladies who were comparing the greyness and thinness of their hair not just on top of their heads but, well, down below as well. There seems to be something about cancer that makes people open up and care less about who hears it – then again, that could just the people of Plymouth.

Now for the serious bit (skip this if you just come here for the good times). Building up to today’s treatment has been hard, harder than any of us anticipated. Yes, I’ve still been able to work but not as much or as quickly as I would have liked and, yes, I’ve still been able to dismantle our rotting decking but it’s taken me two weekends and it’s still not finished. But mainly, I’m just incredibly tired. This sucks because I live for my evenings when I get to write, listen to new music, socialise a little and generally just catch up with the world. Sadly, now all I seem to be able to do is scroll through the same six inches of Twitter and fall asleep in front of Netflix documentaries about Pyramids or to the soothing tones of David Attenborough or Morgan Freeman.

Don’t get me wrong, I’m not feeling sorry for myself, I know there’s a lot worse out there and, in all likelihood, worse to come for me, but I have genuinely been surprised by just how sneakily the tiredness creeps up on you. Oh, and I’m not allowed to call it tiredness anymore I’ve been told – tiredness can be cured by sleep, this is fatigue and it’s just here to stay for the duration of my treatment. So, aching joints, persistent fatigue and occasionally swollen nerves is all there making everyday life just progressively less fun – a lot like the endless stream of mindless pop pumped out of the radio thanks to the soulless shills at Heart FM which plagued the entirety of today’s treatment. Still, as I was to learn later this very day, that too passed.

THE NEW NORMAL #32 – A LITTLE LESS CONVERSATION….PLEASE

Happy New Year cancer fans, I trust you had a restful and gorge-ous festive period. Without wanting to sound too much like a moody vigilante superhero, cancer doesn’t take a break at Christmas, so I’ve been pretty busy over the last couple of weeks. In between the boxes of Quality Street, gallons of mulled wine and novelty shaped savoury snacks, I managed to fit in two consultations, a CT scan, my first round of Immunotherapy treatment and a visit to my friendly neighbourhood Dermatologist. Yeah, that’s right, I’m like one of those Christmas Day joggers that everyone hates but with a medical team around me.

Anyway, humblebragging aside, I thought I’d start a new year/decade with the good news. The Sarcoidosis thing seems to just be a side-effect (more on those later) of the Melanoma that has set up camp on my pancreas so there’s nothing more to be done with that after my lung function tests came back as ‘well within the normal range’. I’ve also mastered the whole diabetes thing, even coping with a Christmas dinner resulting in no untoward effects although I can safely say this was the ‘dryest’ Christmas of my adult years (despite what my glass recycling box currently looks like – we just had a lot of boozy visitors, OK?). And finally, the big one, the latest of my CT scans has shown that my pancreas has sufficiently recovered from the diabetic ketoacidosis that I don’t need an operation, instead leaving my fate up to the far less knifey alternative of immunotherapy. So, I can eat, drink and be merry (within reason) and I’m sticking with just the three major scars on my body…for now.

On the less positive side (not negative, just less positive) I had my pre-Immunotherapy screening on 31st December which was a bit of an eye opener. That’s right, I spent the last afternoon of the Tens/10s/Teens discussing the side effects of the two drugs that I was about to have willingly plugged in to my veins. To save you all the internet searching fun, here’s a little introduction to the potential side effects of the dynamic duo of Ipilimumab and Nivolumab (catchy names, aren’t they);

  • Skin rash.
  • Diarrhoea/Constipation (hedging their bets there, I feel).
  • Feeling Sick/Nausea.
  • Risk of infection.
  • Pain (quite vague that one).
  • Reduced levels of mojo.
  • Changes in the way your liver works (getting vaguer).
  • Hair thinning (ha, jokes on you Ipilimumab)
  • Effects on the eyes.
  • Breathlessness or a cough.
  • Enlarged penis.
  • Effects on the nerves (specifically making them swell – just about as grim as it sounds).
  • Severe tummy pain.
  • Effects on hormone levels.
  • Bruising and bleeding (back to the vagueness).
  • Changes in the way your kidneys work (really?).
  • Effects on the lungs.
  • Raised blood sugar levels (great news for a fresh new diabetic).
  • Sore mouth/Dry mouth.
  • Spidey senses.
  • High blood pressure.
  • Build up of fluid (winner of the ‘most vague’ award).
  • Changes to your heartbeat.
  • Impact on fertility.

Now, one or two of those may be made up (maybe even three) but even so it’s a lot to take in when you’ve got to get home and prepare your five-year-old for a late night. The slightly more troubling thing is that you then have to sign a consent form basically saying that you’re cool with all of the above, even if it all happens at once because all of that will be worth it if the drugs do work and it turns out that the Verve were wrong all along.

Three days later, I found myself sitting in a wipe-clean recliner at 8.30am with a cannula in my wrist trying really hard to forget the list of side effects. Fortunately, there were a few things to distract me and keep things in perspective. The distraction came from the conversation opposite me between two other treatment patients that would distract most people from any other activity. It went roughly thus;

Patient 1: It’s my son’s 40th soon, we’re throwing him a party.

Patient 2: Oh yeah? Doing anything special for him?

Patient 1: Yeah. My daughter in-law and me are going halves on a stripper.

Patient 2: Oh right.

Patient 1: Yeah. He’s going to be so surprised.

— LONG PAUSE —

Patient 1: It’s a small person.

Patient 2: Um…..sorry?

Patient 1: A small person stripper. You know, like a midget or whatever they’re called, it’s going to be hilarious.

To put this in to context, the pair’s previous conversation had been about how they were both entering their fifth year of chemotherapy and that one of them was aiming to still be around long enough to see his daughter graduate in 2021. From the profoundly humbling to the ridiculous in a way only Plymouth can somehow manage.

In another corner of the same ward was a lady getting her first ice-cap treatment – this is where you have ice-cold water fired around your head at great speed to counteract the hair loss impact of the chemotherapy. The same lady was given a pile of drugs followed by another pile of drugs to counteract the nausea and vomiting caused by the first pile of drugs. By the time the nurse came around to fit my cannula up to the drip, any thoughts of self-pity were once again dispatched (sometimes I think they pay people to be worse off than me just so I don’t get too down).

The first drug takes about 90 minutes to drip into your blood stream during I which I read (Matt Haig), stared out of the window and scrolled through my phone like my life depended on it. When the conversation in the room turned to funeral arrangements and preferences, I put my headphones in to sift through the various new tracks I’d been sent to review for my other blog. At the end of the hour and a half of infusion I was ready to be reconnected to the second drug but there was a little left in the drip and that’s when the nurse dropped something of a mind blower. I was told that we had to wait until all the drug was inside my system for the sake of my health but also because each bag costs in excess of £1000. That’s £2000 per treatment and a total of £8000 for the first course of treatment which, realistically, is not likely to be the last course of treatment. Now, I do OK financially but there’s no way I could afford that without either the NHS, remortgaging/selling my house, or running up serious credit card debt which doesn’t feel like something I’d want to do when I’m sick.

Anyway, I got all my drugs into my veins and after about three hours I was able to leave with a little appointment card stating my next treatment (24th January if you’re keeping count) and a better understanding of what is going on inside me. The reason these drugs are so expensive, you see, because they are clever in that they attach themselves to the T-cells in our immune system to attack the proteins that prevent the immune system from working, thus letting it do it’s job. No pile of drugs, though, no cold-cap and no sign of any medical intervention apart from a tiny hole in my wrist – what a time to be alive? So far, the only ones on the side effects list to have hit casa del Monger are the skin irritation (arm pits, weirdly) and just general tiredness which I’m measuring against my LSW (Long Suffering Wife) to see if this is just post-festive fatigue or something altogether more cancery.

Finally, today I had a Dermatology appointment to check up on my manky toe which is generally good news and, while I was there, I got him to check my pits for which I was prescribed some cream to pick up at the hospital pharmacy. I wouldn’t mention this were it not for the genuinely bizarre conversation I witnessed during my wait for my prescription. As I sat there clutching my raffle ticket (worst prizes ever, trust me), a small man wandered in with his piece of paper and was promptly given his medication, the whole conversation and exchange took place in hushed tones that were inaudible to the rest of the room. So far, so normal, but then he blurted out, at the top of his voice, “do you have any baby oil?”. The whole room did that very English thing of being acutely aware of this situation but also pretending to by oblivious as the pharmacist did his best to locate the requested item; “We used to have it, maybe we’re out of stock….hmmm, sorry”. We could all see the baby oil on the shelf next to the checkout but nobody said anything and as the man shuffled his belongings the next customer moved up and, equally loudly, stated; “you have baby oil, it’s there, on the shelf”. This was the most awkwardly English situation and the worst part was that nobody told the guy and he shuffled off without his baby oil.

Reading that last bit back, it was kind of pointless and doesn’t add a huge amount to the story, there isn’t even a deep philosophical point – it just made me properly giggle because of all the chat about baby oil.

So, my tips for anyone undertaking immunotherapy any time soon would be to wear comfortable clothes, take distractions (books, phones, a Gameboy, clackers* – whatever you generation dictates), take a snack and take either headphones or ear muffs if you don’t want to listen to other people. It’s been a busy festive period but all in all a positive one which is good because I bloody love Christmas and it would be a shame to ruin it.

*Maybe not clackers, I would find that incredibly annoying if you were in the same ward as me.