THE NEW NORMAL #45 – FEAR AND LOAFING

The clichés always go that it’s the hope and the waiting that do for you in the end and, as with all clichés, they’re not wrong. I thought I’d got used to the waiting but when your diary is literally a blank page aside from a telephone appointment with a medical professional then you look forward to it like mixture of Christmas and an exam you haven’t prepared for. Like, at all. The latest call was supposed to be with my London contact but instead I was called by one of her ‘team’ and, as all long term sick people will know, this rarely means you’re going to hear anything important. These run of the mill calls are outsourced to the junior doctors to give them a chance to get a taste of some real life action. The conversation usually goes along the lines of:

Junior Doctor: “Hello, I’m one of ‘the team’ and I believe you have a telephone appointment today Mr….”

Me: “Monger. Yes, I do”

Junior Doctor: “And this is in relation to…. [shuffles notes/scrolls furiously through aging NHS computer]”

Me: “Bastard cancer”.

Junior Doctor: “Absolutely. I’m afraid we haven’t received the results of your……”

Me: “Scan?”

Junior Doctor: “Exactly. So I’m going to chase those down and we’ll get back to you in about two weeks, is that OK?”

Me: “Of course [there is genuinely no point in saying no, it won’t get you the results any quicker]”

The sneaky thing this time, however, is that I’ve been given a heads up on the results by the Plymouth team who have given me what they described as a ‘mixed bag but mostly favourable’ – like a bag of pic’n’mix with a small turd hidden in it. The favourable element is that the nodules on my lungs appear to be more sarcoids rather than anything more cancery and all my organs are generally doing what they should be (although there was a slightly worrying comment about my ‘deflated gall bladder’ which, considering mine was removed 5 years ago, makes me question the attention to detail of the radiographer). The virtual turd is that despite continuing with the immunotherapy the tumour on my pancreas has continued to grow (by about a centimetre in a month) and is now starting to push on to my stomach. As my delightful wife described it, ‘nature’s gastric band’.

The frustrating irony is that she’s not wrong, my appetite is way down (no bad thing) and my tolerance for the smell of certain foods (including eggs and boiling potatoes) is now particularly low. This means that my instances of nausea are up and although it’s a grim subject I think it’s worth mentioning in case anyone is reading this at the start of a similar journey. Everyone experiences nausea differently (which is a bummer as it’s a side effect of pretty much every type of cancer treatment) but for me it arrives incredibly quickly and unannounced with just the sensation of my mouth filling with saliva for any kind of warning. Most of the time this is far as it goes and I just need to get to a toilet to let the saliva flood out or risk looking like some dribbling Basset Hound and Human cross breed. Sometimes I get the added treat of full on vomiting as well but, thankfully, this is a relatively rare occurrence but either way the sensation of nausea goes as fast as comes. What remains, however, is the worry of my wife and the kids who have to see my leave a room looking like I’m about to blow chunks and return 5 minutes later feeling genuinely fine but with a look of breathless desperation on my face. Sometimes it feels easier to be the patient than the carer.

The other new symptom is that, at some point, my legs have been swapped out with those of an arthritic 68 year old and every joint below my belly button aches like never before. This is a side effect of the immunotherapy but, when mixed with the fatigue, it makes me good for not much more than lying in the sofa, watching TV and occasionally offering some witty interjection to whatever conversation is going on around me. I know a few readers will recognise this version of me from Sunday afternoons at University but I am usually more active these days and given the limitations on my time it is incredibly frustrating to just rest but rest I must. Loafing around might seem lazy to my hyper critical inner voice but I know that my body needs all it’s energy to fight the internal fight against the aforementioned bastard cancer (if you can read those last two words in the voice of Sean Bean I’d be much obliged).

During this time of inactivity I have been observing our cats (Cleo, Coco and Tango if you’re in to cat names) and am torn between just adopting their way of life completely (not, in any way, like George Galloway) or seeing them as some sort of furry warning of where my life is going if I don’t pull myself together. I’ve also managed a bit of cooking although seeing the chef run off to throw up after finishing the cooking only to return 5 minutes later to eat the meal must have been a disconcerting sight. The other depressingly embarrassing moment was when I squatted down (a slut drop for those familiar with such parlance) to get a dishwasher tablet out of the cupboard under the sink and could not get up. Once my darling wife stopped laughing, she helped me up but the complete lack of power in my knees and thighs was quite alarming so now I just glide around the house lying flat on a skateboard until bed time. It’s the only way.

All of these new sensations bring a certain amount of fear into your day-to-day life, the main worry being that this is now ‘how I am’ and I won’t ever get better than I feel right now. I’ve always had a weird obsession with savouring the last of things and now I’m obsessed with the idea that I’m beyond the point where I could physically kick a ball around with my son, ride a bike or return to my former career as a stripper (Fruity McBooty was my stage name). Similarly, once dining out returns as an option to society will I be able to enjoy one of my favourite pass times or will I have to book tables as near to the toilets as possible to avoid embarrassing dribbling situations. Is this the beginning of the end, just another stage in the journey or the symptoms of my body fighting back? I’d say these are the questions that keep me awake but I think I could sleep through a jump-jet launching off my bed side table at the moment so that’s something positive to hang on to!

Still, I’ve got a lockdown 40th to look forward to in a week, another set of treatment a few days later and, at some point, somebody with a good grasp of medical terminology will ring up and tell me what’s happening inside my body. For now, I shall continue to loaf, enjoy the sun shining through the window on my aching legs and stick my head out of the window when anyone cooks eggs. It’s a small price to pay, eh?

THE NEW NORMAL #44 – REASONS TO BE CHEERFUL

I’ve been pretty angry recently. Angry at a lot of things from big things to small things. I’ve been angry at the inequality in the world, the injustice of the ‘one rule for us and one for them’ approach of British government and the catastrophic approach to the global pandemic that has cost tens of thousands of lives. Then I’ve been angry at the ‘unfairness’ of having cancer when I have so much love to offer my family and friends compared to the hate filled excuses for human beings that will still roam this earth long, long after I’m dead. I’ve been angry that the kids can’t shut cupboard doors or put shoes away and I’ve been angry that some knobhead has been driving his chicken-chaser up and down the road at high speed, scaring the shit out of my cats. Anger has a way of filling the void and, as I’m not working and we’ve got home schooling down to such a fine art that it only takes about 3 hours a day, there is plenty of void to fill.

I’m angry that a slice of normality now seems to involve phone calls from passing acquaintances with medical qualifications who like to tell me that there is something else wrong with me this week (nodules on my lungs that weren’t there before, problems with my thyroid, iffy blood tests). This makes me twitch every time the phone rings between the hours of nine and five, Monday to Friday but I also have to race to pick up as my five year old has taken to answering the phone and his grasp of medical terminology is so weak that the passing on of messages becomes like cracking a wartime code.

However, please don’t jump to any hasty conclusions. I haven’t been stomping around the house, shouting at people are putting any four-letter tirades on Facebook. No, I seem to be getting quite adept seeing the anger coming and nimbly dodging it like one of those rigged coconuts dodging balls as the fun fair. And by dodging I mean vigorously shaking my head for about 3 seconds to get rid of the thought and then going to do something productive like unload the dishwasher or flick snails away from my strawberry plants. Bastard snails – I’m pretty angry at them too. Once the dishwasher is empty and all the snails are whizzing their shells halfway across the garden then I have to move on to reminding myself that I still have a huge amount to be happy about and that’s an important exercise.

My reasons to be cheerful at the moment range from ‘I may be facing up to my own mortality but at least I’ve had more warning than “put your hands on the car and spread ‘em”, giving me some time to sort stuff out’ to ‘Every chance I get to share a learning experience with my little boy is a memory he will have of us together no matter what happens in the future’. I’m also quite buoyed by any instances of sunshine and a weekly shopping delivery with minimal replacement items not to mention winning 6 Sunday roasts delivered to my door by virtue of writing a sub-par caption for a picture of two dogs sitting in pub chairs (that was a very good day). Oh, and I should probably give a shout out to my wife who has the tireless positive energy of a Disney princess even when I am trudging around like Eeyore after he found Tigger using his tail to floss with. Again.  

Anyhoo, mood swings and managing my mental health aside, things have been edging forwards at what feels like glacial speed. The upshot of the London scans was that there is something on my lung but they don’t know what it is and that means yet another CT Scan on 15th June (I think if I have another 3 then I get a free CT Scanner. Or a T-shirt that says ‘I got cancer and all I got was this T-shirt after they repeatedly fed me back and forth via a massive Polo’). If it’s cancerous then there’s no point in doing the pancreas operation – what’s the point in putting out the fire on the ground floor if the rest of the skyscraper is ablaze, eh? However, if it’s not a tumour then it could be all stations go, it’s yet another waiting game. Other than that, the main problem has been my thyroid which doesn’t seem to know quite what to do and that is leaving me all over the place, energy wise, and giving me a nasty case of hypothyroidism and a touch of anaemia. Which is nice. Nothing that a tweak to my medication and a few more tweaks to my diet can’t fix but still it feels like someone out there must be running out of space for more pins on their voodoo doll of me. Imagine if someone has made a voodoo doll of me though – a pudgy little bald thing with eagle eyes and removable internal organs. Mad.

Yesterday I had treatment number 7 which was a little different to the usual affair. Firstly, I was handed a facemask on entry which meant I had to try extra hard to convey emotions and reactions with my eyes leading to some nurses going home to have fitful nightmares of a middle aged man glaring and winking at them. Secondly, my pesky thyroid had acted up during my blood test which meant that the nurses were nervous of starting the treatment without a doctor’s consent – it’s fair enough, if a patient reports being light headed on repeated occasions and has stupidly high TSH (Thyroid-simulating Hormone) levels you might want to double check before pumping a few grands worth of chemicals in to their body. Then again, after two hours of waiting, the doctor was still otherwise engaged so they decided to go ahead anyway – partially for my benefit and partially because by the time I was done it was nearly 6.00pm and the few nurses remaining had run out of things to clean around my solitary presence in the make shift ward. Oh, and they’d run out of white chocolate cookies by the time the tea run got to me so, yeah, another reason to be angry….

No, no no (3 second headshake). Reason to be cheerful? Well, my little boy sobbed his little heart out when I left for treatment and that is horrible but what a thing to be so loved by another person that they can’t handle you leaving for even a few hours? Also, Spotify has enabled my rediscovery of a load of 90s bands that I’d neglected (currently having a Mansun, Bluetones and Longpigs memory lane trip). Finally, I’m less than 24 hours away from that free roast (I’ve gone for the pork in case you were wondering).

The bottom line, as always, is that there is always someone else with more reasons to be angry and maybe they need a reason to be cheerful. I’d put good money that everyone reading this has either directly or indirectly been affected by either the Covid-19 pandemic or institutional racism and inequality – both hugely justifiable reasons to be angry. I have also, during this cancer journey, met many people having to make major adjustments to their life because of this horrible disease and they have every reason to be angry too. So if you’re in the lucky position to not be one of those directly affected then maybe reach out to someone who might be and give them a reason to be cheerful – anything from an unexpected and positive message or a small cake to a bag of flour or a stylish new face mask. It really does help when someone else pokes a hole in your black cloud and a shaft of golden sunlight beams through because, let’s face it, these are dark days for all of us so a little extra Vitamin D could be just what we need.