THE NEW NORMAL #38 – FAITH, HOPE AND CHARITY

Right, change of plans everyone. One thing you get resignedly used to on the great cancer road trip is having to make detours, follow diversions and do a whole lot of waiting at temporary traffic lights. You know how I mentioned that we were going to head back and check out radiotherapy-town again? Well, actually, we’re going take the scenic route through a lovely little village called immunotherapy that I visited earlier this year because we might be upgrading to a nicer hotel in London. Right, this analogy had got out of hand, I’m going back in to straight talking mode. Sorry about that.

Essentially, I have taken the option of a second opinion from a doctor at Guy’s & St Thomas’ in London which might have the result in getting involved with a clinical trial. The trial is researching a new type of cellular treatment taking healthy cells from areas of my body that show high immunity and putting them in the affected area to do their worst (or best). I don’t know a huge amount about this treatment and there’s no guarantee that I’ll be suitable or that it will even work but I’m imagining it to be a little like when your goalkeeper gets sent off and you’ve run out of substitutions so you have to put your outfield player with the best goalkeeping skills in nets. Anyway, this means that I have to put radiotherapy to one side for now as starting that treatment would preclude me from being part of the trials and I have to have faith that someone in this medical chain knows what might be best for me. It might seem odd considering the number of blind alleys and wrong turns my medical journey has taken me on but if I don’t have faith in the medical professionals then who am I supposed to have faith in? Idris Elba? Madonna? John Craven?

All this brought me to the unexpected scenario of being allowed to break out of quarantine after 5 weeks to get a portion of immunotherapy and I was ready for anything – and by ready I mean racked with anxiety whilst wearing a face mask, a visor and two pairs of gloves with a packed lunch that my mum hastily put together for me because I’d left mine at home in the fridge (remember, I’m an actual adult). Now, Immunotherapy doesn’t hold any great fear for me as I’ve been through the process before but this time I had to go to the Nuffield facility across the road from the main hospital as all Oncology ‘action’ had moved up there. Driving there from my sleepy Cornish village felt like driving into a minefield of potential coronavirus infection so I did what any sane person would do – I turned the music up and locked all the doors on my car. Ain’t no Covid-19 punk gonna car jack me on the way to the hospital.  

The Nuffield felt more like I was going for an appointment with a solicitor than anything medical – there were carpets for crying out loud – but no sooner had I arrived that I was whisked up the stairs by the first of many masked nurses I was to meet today.  My temperature was taken by zapping my forehead (a new experience), my bloods were checked, and I was placed into a familiar chair in unfamiliar surroundings. The clever oncology folk had converted a space normally used as an operating theatre in to a chemo/immunotherapy treatment ward so, with excellent social distancing in place, four of us sat facing each other in a windowless room that felt as clean as if it had just been opened that day. Nevertheless, unwrapping my cheese and pickle sandwich to eat in an operating theatre that would normally be used for endoscopies and other such invasive procedures felt like I was ticking something off a particularly bizarre and very niche bucket list. On Eurotrash.

I always go into these sessions on a real high for some reason, I think the idea of getting drugs that give my body a boost feels like I’m legitimately taking steroids before the big game which is pretty exciting. This mood is usually boosted by my fellow cancer folk and the nurses who all help to make this as enjoyable an experience as possible but today was different for two distinct reasons. Firstly, although the nurses remained chipper and full of quality banter, the fact that every one of them was wearing a visor, a face mask and a bandana was particularly dehumanising. I can only imagine what having an army of these brave souls buzzing around you in ICU must be like but even the limited interactions I had felt a little like letting a group of very polite bank robbers stick needles in your arm while you make small talk. Also, an unexpected side-effect of the face masks is that everyone talks with a particularly nasal tone due to the pinching strips on the nose which, once you get over the idea that everyone has a cold, is actually pretty comical. Secondly, all the other patients were nervous. There was no chit-chat today, no gallows humour and certainly no banter which made for a much quieter and less convivial environment. You could see the grim, steely determination on the faces of all those having treatment and it’s a look I’ve only seen once before – on the faces of parents about to accompany their pre-teen children in to Primark with a “in, out, no messing about” vibe.

One thing that is still present, however, is the concept of hope. Despite the lock down, coronavirus, isolation and the general bleakness in the world at the moment, people wouldn’t come to Oncology if there wasn’t the slightest morsel of hope left rattling around at the bottom of their soul. The saying has always been “it’s the hope that kills you” but I am increasingly finding myself of the opinion that it’s the hope that keeps you alive – that and the cocktail of drugs I’m taking. And if the drugs start to fail then I know I can rely on an army of friends, family and acquaintances to share stories of their uncles, aunts, neighbours and the like who have defied the odds to live lives full of fun, meaning and, most importantly, a number of years rather than months.

Finally, I just wanted to take a moment to focus on the goodness of people. Throughout the past 5 weeks, I have, of course, had excellent support from the NHS who have recognised the difficult situation that I’m in and gone above and beyond to make sure I get everything I need. Beyond that, however, there have been so many excellent people starting with the numerous postal workers and delivery drivers involved in brining essential and non-essential items to our door. We have had numerous doughnuts, flowers, cards, 3 packs of top trumps, corned beef, tinned ham, booze, Easter eggs, the best Brownies in all the South West (thanks to the good folk at the Early Bird), a fully made up picnic and, well, inflatable reindeer horn hoopla. These gifts have come to us from family and friends which, at any other time, would make me feel uncomfortably like a charity case but I have learned to recognise the signs of people who genuinely want to help so now I just wave and say ‘thank you’ from a safe distance.

One question that gets asked alongside the handing over of well wishes and gifts is “how are you coping? How are you being so brave?” to which I smile and mumble something about just getting on with things. What I really want to say, however, so I’m saying it here is “I am not brave”. What people see from the outside is someone trapped in their house with an indefinitely short life span and no idea when they’re going to be able to see loved ones again. What I see from the inside is that I’ve got my family with me, I can speak with anyone I want or need to, and I have trained medical professionals working in my favour. Now, compare that with someone who has to work in an ICU every day while their children stay at home or someone who has to say their last goodbye to a loved one over the phone because they are too infectious. How about someone opening their small business to serve their local community with food or someone going out into the homes of the vulnerable to provide essential care? Or how about those coming out of retirement to serve the NHS or those travelling thousands of miles to work in a country where they aren’t fluent in the language just because they have the required skills to save lives. Those people are brave. Those people are coping. Those people are the stars of the show. The rest of us are just part of the chorus line so memorise your lines, learn your steps and stay the hell at home.

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