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……”
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?