I must admit that I hadn’t really been paying attention to the numbering of this blog so I haven’t prepared any kind of fanfare for this fiftieth entry but my life is not really about fanfares right now so it’s kind of fitting. You see, I’m back at home in my cosy corner of Cornwall and taking things slowly is the order of the day but to start there would be to cut out a whole chunk of the story so let’s skip back a bit shall we?
When last we met, I was ten days post op (no, not that kind of op) and gleefully enjoying being freed from all wires, tubes and observations. Over the following four days I started to eat soup and then tackle solid food which I enthusiastically tucked in to before realising, very suddenly, just how limited my insides are. It turns out that 10% of pancreas and 10% of stomach fused together doesn’t give you a lot of room for storage so, without being too graphic, the marbles weren’t hanging around in the Kerplunk tube too long before scattering down to the bottom (pun intended). To help with this syndrome going forward, I have been prescribed a drug called Creon (seemingly pronounced by all the nurses as Crayon – “don’t forget to have your Crayons with your dinner” – but actually pronounced Kree-on to avoid confusion) and this is something I have to take with every meal and snack for the rest of my life or until some more convenient wonder drug is developed.
Getting my head around taking these tablets, managing my blood sugars by adjusting insulin and understanding the capability of my stomach to receive and process food was literally all I could think about because this is how you play the game. If you want to get out of hospital (and I did, desperately) then you have to prove that you’re a) not going to walk out of the hospital and straight in front of a bus and b) if you then do make it home then you’re not going to stick your fork straight in the toaster while trying to make soup out of all your medications. On a glorious Monday morning, wearing nothing but my pants and a smile, I was told by a be-masked doctor that all my vital signs were good enough for me to go home so I put the call in to my wife and she set off from Cornwall to extract me but this just meant we were on to the next level of the game; Discharge.
Now, for anyone who’s ever spent a night in hospital, you will know the false hope of those words “you can go home”. I got the good news at around 9.00am but wasn’t able to leave the hospital until around 3.00pm because I had to wait for exactly 2 things; 3 vaccines to be injected in to my arse (due to the lack of spleen) and a big bag of drugs to be delivered to my bed. This took around 10 minutes of activity and 4 hours and 50 minutes of lying on the bed listening to podcasts while somebody, somewhere else in the hospital needed a space on a ward which they couldn’t have because I was in it. It’s a well-known fact that wherever you go in to the NHS system, getting out of the hospital seems to be the hardest and most lengthy part of the process (proportionally speaking) but that is where the bed blocking begins and it is incredibly infuriating. Particularly because once I had the big bag of drugs all I had to do was complete a ‘customer’ survey on an iPad, hand it in at reception and then stride out of the hospital – blinking in the natural light and trying to suck in some fresh air once I had made it past the British Bulldog-esque line of smokers that seem to guard every hospital entrance and exit.
The extraction plan was that my brother and sister-in-law would collect me, whisk me away to their nearby house where I would wait to be reunited with my wife while having a proper cuppa and adjusting to the colours of the real world after my brief incarceration. There were, however, two surprises awaiting me. Firstly, when I slurped down my first mouthful of non-NHS tea, there was a worrying sensation. I didn’t like the taste. I checked that this was normal tea and normal milk but it was all above board and not an almond or oat in sight. Somehow, during the operation and subsequent fasting, my taste buds have changed and I no longer like tea – I’ll pause to let that sink in. I have subsequently discovered that all tea tastes rank to me now (sad face) and also the flavour of cucumber has changed forever and not for the better not to mention a new relationship with beans but more on that later if you have the stomach for it….
The second surprise was far more pleasant as my wife arrived with my little boy in tow which was completely unexpected but very welcome. Two weeks is the longest I have ever gone without seeing my little boy in person and there were some days that I couldn’t even face a video chat because it felt too much like staring in at the window of the sweet shop when it’s already closed for the day. To be able to hug my little boy (and his omnipresent favourite toy monkey Louis) was something I had, at points, not thought possible and I was still mentally prepared to wait another day so I was slightly blind sighted by this carefully arranged plan and we didn’t leave each other’s side for the rest of the evening – even the temptation of a walk to see Big Ben couldn’t tear him away.
The following day I was carefully strapped into the car with a pillow for protection between the seatbelt and my oh-so-tender midriff which still featured two fairly raw drain holes with bandaging on. Owing to various road closures we opted to leave via South London in all its pot-holed and speed bumped glory which meant the conversation in the car was largely as follows;
Me: “Ow” [plus sharp intake of breath]
By the time we hit lunch time we had made good progress down the A303 (respectful nod to Stone Henge, longing looks at Longleat and always questioning just what exactly Wookey Hole is) and stopped to stock up. The service station looked like the employees had been using it as the set of a cheap post-apocalyptic horror film with chairs piled up, yellow and black striped tape everywhere and a definite sense of unease. I like to think I added a sense of realism by walking in with lymphatic fluid soaked into my t-shirt and shorts as one of the drain holes had burst open at some point on the journey without me noticing.
We drove on and I decided to eat my small pasta pot as we went with each small fork full being masticated to within an inch of its life, thus keeping to my new eating regime. This was all fine until we approached the infamous incline of Halden Hill near Exeter which any Westcountry driver knows presents a challenge for even the most powerful gearbox and, intriguingly, also makes my ears pop in the same way an aeroplane lift off does. This combination of new food in my new stomach and a long gradual incline did not mix well and the next three minutes were a blur of unfurling old nappy bags to be repurposed as sick bags, heavy breathing and my wife trying to keep her eyes, ears and all other senses on the road until the lay-by that we knew to be on the other side of the crest. I’m pleased to report that we made it and I managed to exit the car before seeing my lunch again and feeling far more stable for the remainder of the journey. This was all made far less traumatic by a little voice from the back seat of the car saying “Daddy, do you want Louis to make you better”? Sometimes all it takes is a little unprompted kindness. And a stuffed monkey.
I’ve been back at home for nearly three weeks now and there have been a flurry of phone calls as one arm of the NHS tries desperately to connect with the other and get me on the straight and narrow. I’m lucky, I have a great GP, a wonderful local nurse, a fantastic skin cancer specialist and a wife that cares beyond the point that would be reasonably expected of her. Throw in a community, friendship group and family that are always on hand and I’ve got multiple safety nets that a lot of people don’t have and I am acutely aware and grateful of that fact. Nevertheless, when your digestive system behaves like someone pouring cold lumpy porridge through a Kerplunk set with very little warning, that toilet seat can be a lonely place. I have learned that this is a common symptom for anyone following surgery of my sort and is called, wait for it, dumping syndrome. I’m just going to let that one float there for a second…as it were. Essentially, this is where your stomach lets food and drink pass straight through in to the small intestine which turns you in to a ticking toilet time-bomb and leaves you spending more time contemplating sound-proofing your bathroom than you had previously considered reasonable. It is not good for the maintenance of mystery or romance in a relationship.
I’m learning that little and often is the way to go with food, I have to cut down on liquid as this just greases the wheels a little too much and all the space left vacant by my much missed organs now seems to act as an amplification chamber for stomach gurgles which can be heard from the next room if the wind is blowing in the right direction. I am learning that although I need to keep my blood sugars in the right range, I also need to make sure that my body absorbs the right amount of fat and protein so despite wanting to eat healthily there is a very real need to eat rice pudding, jelly, butter and carbs in a way that I have tried to teach myself is wrong, wrong, wrong. Essentially, each day now is split between eating, digesting and pooing with only one of those being a pleasurable experience and so I find comfort in unchallenging TV (Cobra Kai and the Vicar of Dibley are the unlikely pairing that have seen me through these first few weeks).
As I settle in to my new regime of medication (20+ tablets and 5 injections a day at present) and face up to a future with a severely depleted immune system and eyes that are literally bigger than my stomach, I can only find it in myself to be grateful. Sure, I have down days; the agony of trying to digest a bean quesadilla knocked me out for half a day and caused the kind of rumblings that may have registered at the low end of the Richter scale in neighbouring counties. Nevertheless, I am here. I’ve seen my little boy return to school, my three stepchildren are back at College and there is a new bathroom suite piled up in my lounge which I may get to see installed. My thoughts are turning to seeing my son turn 6, celebrating Christmas and returning to something that resembles work for the first time in months. All of this makes me incredibly grateful to the friend of a friend who knew enough about my type of cancer to raise it with a surgical colleague who happened to be one of the best surgeons in the country at that specific type of surgery and was able to slice me open, remove the cancer and leave me with a life still to live.
For now, I just need to stabilize my weight, monitor my blood sugars, keep away from infections and give my ‘new gut’ time to adjust to life beyond intravenous fluids. I am managing to walk a few hundred metres a day but the way my torso has been reconstructed makes me want to hunch so relearning posture is on the agenda too and then maybe, one day, I’ll be able to pick my little boy up again which is a definite target. There are days when the sheer volume of tablets, injections, appointments and basic decisions on what to eat feels like too much but it’s not, it’s really, really not. A shake of the head, a deep breath and a lifting my body to sit up straight puts me right and if I need an extra boost then I just remember the days spent tethered to IV drip in a sweat box with only the sound of other men rejecting their food in one form or another for company. If I don’t get better, if I don’t deal with what’s in front of me then that’s where I’ll end up and with Covid making it’s sequel return in the Autumn of 2020 (‘this time it’s personal’) I want to spend as little time near a hospital as possible. Motivation? Check. Toilet roll? Check. Stretchy trousers? Check. Netflix subscription? Check. Stuffed monkey? Check. Let’s do this recovery thing.