During a difficult period in my life (divorce, sofa surfing, temporary homelessness etc.) I had a recurring nightmare that the police would come in the middle of the night and take me directly to prison for a crime that I had no knowledge of. I didn’t dream this dream for a very long time and then, during this period of lockdown where I was faced with an untimely death, the dream returned. Now, I know as well as the next guy that telling someone about the dream you had last night is tedious (unless it’s sexy and involves you) but I do find it fascinating that your subconscious can create a scenario to be played out in the middle of the night when you are anxious about being sucked away from everything you know and love by something that you have no control over and are unable to fight. Although this dream has now disappeared again since my discharge from hospital the anxiety remains, festering in my subconscious, and I can tell you that managing that head-fuck during a pandemic doesn’t make things any easier.
I wanted to start with that little story to give the last few weeks a bit of context because there is a trap with recovering from any major procedure and it’s a dangerous one that I keep falling in to like Sideshow Bob stepping on rakes. Every message, phone call, passer-by and well wisher will ask “how are you getting on?” and I will give one of a range of standard responses which feature phrases like “not bad, considering”, “fine”, “I’m spending less time on the toilet now”, “I’m eating much better”, “I managed a walk on the beach the other day” or “do you want to see my scar? It’s healing really well”. And all of these responses are true and fair representations of how I’m doing but they all refer exclusively to my physical recovery. As with everything in life, however, there is a mental and emotional side to recovery and that is something we are all guilty of ignoring in this conversation.
My physical recovery is going well and, by and large, my mental and emotional health is pretty good as well but there have been bumps in the road, to say the least. For instance, we recently binged on the Netflix series the Fall (very good but not for the faint hearted) which featured a scene where one of the characters was coming out of a coma and gagging on the air tube that had been fitted down his throat. The sound of this gagging accompanied by that omnipresent beeping dragged me right back to the hospital ward and I had to close my eyes and put my hands over my ears like the first time I watched ‘IT’ at an inappropriately young age. This was an involuntary response and one that I wasn’t expecting but I am now learning that scenes involving surgery or anyone in a hospital bed make me seriously uncomfortable in a way that they didn’t before.
On the emotional side of things, I’m feeling pretty vulnerable and being cocooned in my house to hide from the dastardly Covid doesn’t help with that state but as the body gets stronger so your confidence grows and the vulnerability subsides. Small walks, picking up my son from after school clubs when the playground is less busy, doing basic chores and even having a cuddle without wincing all add up to a better state of mind. It is noticeable, however, that for all the attention given to mental health at the moment, this is one area that hasn’t been checked up on. I’ve had calls from Oncology, the Oncology dietician, the London surgery team that treated me and a few others but nobody has taken the time to check in on my ‘feels’, as the kids say. I’m lucky, I’m not standing on a ledge (literally or metaphorically) but I hope that others in a similar situation to mine might be getting more after care on this front (I hope, but don’t hold my breath).
One thing that I and others have recently noticed recently is just how much of me cancer has taken away recently. First, there was the skin pigment and hair colour which started to turn me in to a paler, more wan version of myself thanks to the immunotherapy treatment. Then came my energy levels and natural joie de vivre, stripped away like a paper raincoat during a monsoon shower and only partially restored by western medicine. The most recent theft, however, is more literal and physical. I’ve lost about 2 stone or 13 kilograms since my operation and, even for a big fella like me, that’s noticeable. I used to have thick, tree trunk thighs (rugby player’s thighs my neighbour used to say which was only mildly disturbing given the 70 year age difference) but now they are closer in size to large Schnitzels which gives me the overall body image of a rotting satsuma on two cocktail sticks. The thing that slays me every time I see my new body (complete, I am told by my loving family, with a big belly sad face made by my scar for a mouth and nipples for eyes) is just how indiscriminate cancer is with this stuff. Like a malicious Artful Dodger just swanning around and whipping out your organs, pocketing your body mass and siphoning off your lust for life before skipping down to the docks to share its ill-gotten gains with the other urchins. Kids can be nasty, can’t they? Oh wait, that was an analogy. Cancer was the kid. Kids are alright after all! Hooray. Still though, cancer is a knob.
Despite all of this, when I wake up every morning I am lucky enough to have a wife who murmurs something along the lines of ‘morning’ or ‘how are you feeling’ and, when she finally rolls over, she looks at me with absolute and unmistakable love. We’ve been through a lot together but when the tears dry up and the calm moments come between cancer, Covid and family life, there is a look I get gifted from those beautiful eyes that is so clear, so unmistakable and so uplifting that I honestly think I could do without all the drugs for a day. That look is love and I’m sorry if this is corny or mushy but it is such an important part of my story that it really does need mentioning. We discussed the other day whether I would still be alive if our ‘sliding doors’ hadn’t opened at just the right time and I really don’t think I would, such is the power, positivity and stability I get from my wife’s love. If I could bottle that feeling and hand it out to everyone, even if for just one day, I know it would make the world a better place.
In terms of actual medical stuff, there have been a lot of phone calls from people claiming to be medical professionals who seem happy enough with my recovery thus far. Words like ‘amazing’, ‘incredible’ and ‘remarkable’ have been used but I take this all with a pinch of salt as I am acutely aware of just how rare a position I am in. There really aren’t many people knocking around, particularly at my sprightly age, who have had so many organs removed and are still managing to mow the lawn, walk to the shops (without actually going in) or absolutely thrash a five year old at a game of rock-paper-scissors. This means that most of the medical folk I speak to only have experience of one part of my situation and it is up to me to put all of that advice together and work out how to best move forwards. The diabetic team want me to lose weight, the oncologists want me to maintain my current weight, I need to do exercise but keep my leg up because of the lymphedema, I need to stay hydrated to help with the meds but not drink during meals because of the enzymes and I also need to eat around 7 times a day. After a while, you have to tune a lot of this stuff out (not all of it) and just listen to your body. If you had seven people stood around you in a circle, they would all see only their view of you and would give advice based on that. However, you spend 100% of your time inside your own mind and body so you’ve got a unique view on things and that counts for quite a lot when it comes to staying alive and staying happy.
Nevertheless, there is one group of medical professionals that I would like to doff my virtual cap to (fun fact, I just sold a flat cap on eBay this week so I can no longer doff it) and that is the Phlebotomists. These are the people that spend all day, every day (and night in some cases) taking blood samples from patients and getting them analysed. Blood tests are a routine part of the being sick process and I’m mercifully unsqueamish about the whole thing so I hadn’t given it much thought before but my veins are starting to be obstinate about giving up blood so I’m now in to the space where it takes multiple attempts to draw blood and fair bit of moving the needle around inside my arm until they strike gold (or red, to be precise). What fascinates me is that this bit of blood (less than your average shot glass full) is then sent off to someone with minimal information, they analyse it and work out exactly what is missing, too high or too low and that allows the correct medication to be prescribed. Imagine, if you will, turning up at a builder’s yard with a brick from your house and asking them to tell you what needed fixing in your house. Or asking a mechanic to tell you why your car makes that funny clunking noise based on the bit of engine oil you’ve collected in an old MacDonald’s cup you found under the passenger seat. It would be madness but that is essentially what the blood nurses do and they are also, in my experience, some of the funniest nurses around so I say cheers to the Phlebotomists and all the bloody Blood Nurses. I’d raise a glass but I’m doing Sober October to raise money for Macmillan and I’m probably not supposed to be drinking right now.
The main focus now is to get back on to the Immunotherapy wagon which I did with aplomb yesterday. This is the same treatment I’d been having before the operation but now that I’m lighter, weaker and in a different boxing category, I was warned to expect more fatigue as a result. The treatment itself was fine (canula went in first time and the lovely Scottish nurse administering the Nivomulab was very chirpy) but there was a slight moment of panic when a shriek came from the corridor outside the ward which made me and the other cancer patient nearly pull our IV drips out in shock. It turns out that the nurses have to hide all their pillows at night to stop them getting pinched by the other wards and the room where they had stock piled the pillows had been the scene of revenge ambush in some hot nurse-on-nurse action. Maybe it’s time for a Carry On reboot….or maybe not, woke Carry On would be just awful.
For the last few months, one of the common conversations in our house of a morning has been “if you could go back in time, when would you go to?”. We used to discuss going back to the 60s and 70s to enjoy the music and cultural explosion or visiting earlier periods to witness significant events or maybe just to get Hitler circumcised as a baby. More recently the wish has been to go back within our own timelines to alter our recent history – maybe go to the doctor earlier or demand a second opinion on my skin sample slides. My wife recently suggested that she would accept going back to 2018 when we had settled into a pattern of going for scans every three months and getting the all-clear a few weeks later. Well, as Gabrielle once sang, “Dreams can come true” because the message from the Oncologist is that IF immunotherapy goes well and IF subsequent scans come back showing no signs of further growths then we are potentially in line for a return to a less eventful way of life. The fear, of course, is that it’s my wrongful arrest dream that comes true by mistake. Or that one about the giant ice-cream in bondage gear….No Mr Whippy, not again!