THE NEW NORMAL #30 – SORRY NOT SORRY

I’m not convinced Elton John is English. Anyone who can write a song called ‘Sorry Seems to Be the Hardest Word’ just doesn’t come across as a true-blue, dyed in the wool Englishman considering how ingrained apologising is in the culture to which I was born. I raise this, largely, for the reason that I find myself apologising (or wanting to apologise) a lot at the moment but I have remembered something that a colleague once told me and so I wanted to give it a go. The premise is that instead of saying ‘sorry’ to somebody, you should try saying ‘thank you’ instead with the aim of finding the positivity in every situation. We’ve all seen the memes about over apologising for things we had no control over, and I bet everyone reading this has said ‘sorry’ in the last week for something that either wasn’t your fault or, indeed, didn’t actually happen. Today alone, I have apologised to a lady who I held the door open for and said ‘sorry’ to someone who phoned me by mistake (Sorry you can’t dial a number properly!?!? Madness).

So, rather than issuing a big fat apology for the chaos caused by all my various health issues, which is what I want to do, I am going to say thank you. Now, if that feels far too un-English for you then this is your last chance to go and have a cup of tea with a incomprehensibly tasteless biscuit on the side (yes, Rich Tea, I’m looking at you) while this whole thing blows over.

The first thank you has to go to you, dear reader. Dear friend, indeed. Normally, I would apologise for dragging you in to my misery and all that it entails but today I am, instead, going to thank you for coming along for the ride. The number of people that awkwardly tell me how much they ‘enjoy’ reading my blog makes my heart swell and knowing that you’re all out there, rooting for us, really does make a difference. I also love that I get to make people laugh, cry and just generally feel stuff that they otherwise might ignore in favour of Love Island or Gogglebox so I’m grateful for that. One reader got in touch recently to say that they felt that reading the blog was simultaneously intimate and invisible, like watching someone’s every move through a mirrored window without ever letting them know about your presence. So, thanks for watching, you weirdos.

Next up, I want to say thank you to my family – in blood and in law. I’ve put you through the mill over the past few years and, normally, I would apologise for that burden and emotional turmoil. Not today. Thank you for adapting to all the challenges, for finding new ways to help me and for not getting angry when things don’t go as planned or hoped for. I’ve always said I would go through this ordeal 100 times over than have to watch someone I cared for deal with cancer so I can’t imagine how difficult this must have been, but you’ve all met the challenge with kindness and good humour. If things go south I’ll be coming to you asking for a pancreas donation if you’re compatible though so just keep yourselves healthy so I can harvest your organs, yeah?

Talking of family, I should say a special thank you to my three stepchildren. Not only did they not ask to have me in their lives (note, they’ve never actually said this to me so I’m doing something right) but the disruption that repeated hospital visits and fluctuations of health causes can only have added to the traumas of being in your pre-teen and teenage years. I’m not going to apologise, however, but instead say thank you for just getting on with it, never complaining and for stepping up every time the chips are down to support your mum and keep things going. I’ll take this chance to play the cancer card, however, and say put your bloody shoes away! Guilt, it’s the classy way to be a stepparent.

Work is always an area for a heavy sense of guilt and the temptation to apologise for being sick or just generally lacking in one department or another is strong. Not today, though, sunshine. No, today I thank colleagues and bosses not only for their understanding and empathy but for having the courage to talk to me about what’s going on health wise and for being human enough to have a laugh with me about the absurdity of it all. There have been times when I have felt like I am hiding behind ill-health and I have hated that so I push myself harder and when I inevitably fall off the metaphorical bike you’ve always been there to pick the bike up and either pedal it on yourself or help me back on. It has genuinely been a privilege to work with such a wonderful bunch of human beings; than you for that. That said, if you could see your way clear to getting me a set of stabilisers that would be peachy.

One of the people I want to say sorry to the most but never do is my five-year-old son, Jake. As I’m having an apology amnesty, however, I will just say thank you. Thank you for never getting upset when you visit me in hospital, thank you for seeing the fun side of eating in the hospital canteen, thank you for so excitedly wanting to inject me with insulin and thank you breaking any morose or tense moods with a simple fart or singing the theme tune to your favourite cartoon (currently ‘The Day My Butt Went Psycho’, if you’re interested). Above all else, thank you for taking this all in your tiny stride and giving me the best reason to stay in the game – I doubt (and hope) you’ll ever really understand how much your spirit has helped me through the last few years but I know that at the very least this experience will give you enormous empathy and patience which are great qualities to have.

Last but not least (the furthest possible place from least, in fact), I want to thank my wife. You didn’t sign up for this, you’re a sunshine girl with the lightest, most beautiful spirit and every consultation, hospital visit and ‘bad day’ does it’s best to strip that away. But it doesn’t win. In what is likely to be the weirdest compliment a man has ever paid his wife; you are like a lighthouse. I don’t mean that you’re remote, lonely and hard to arrange furniture in, no, you’re just a shining beacon of light that always keeps me on the right course towards positivity. So, thank you. Thank you from the bottom of my heart for never letting that light go out and for, even in your lowest moments, always being the one person I want right by my side – even when you are gleefully injecting me with blood thinners of a morning!

Now, those of you that come here to wallow in my medical mire might be feeling a little discombobulated by all this but it’s something that’s been rattling around my noggin for a while so I wanted to get it out. In a week when I’ve ripped the front off my car, had the garden tap inexplicably explode at 8.00am on a Tuesday and have been trying to get back in to work it feels good, nay necessary, to focus on the positive that is all around me. We’re all going through our own battles in one way or another, from one day to the next but feeling like you have to apologise all the time isn’t going to make that journey any easier to be thankful for what you have and if you don’t have anything to be thankful for then just be grateful that you’re not Boris Johnson or a turkey being fattened up for Christmas – somebody always has it worse.

THE NEW NORMAL #29 – (YOU CAN’T) CHOOSE YOUR OWN ADVENTURE

Image result for choose your own adventure

It’s been a funny few days, to say the least, but as I sit down to write this update there is a certain calm descending over our normally chaotic household. It could be the calm in the eye of the storm but for now I’ll take the calm and roll around in it like a naked lottery winner on a massive pile of fivers. The calm has been caused by getting used to the self-injection of insulin (my five year old can even do it now), I’m a dab hand at testing my blood and I’ve finished taking the antibiotics so we’re moving on in to something else approaching normal. That said, I’ve now had to inject myself in a pub car park and the toilets at Bill’s Restaurant in Plymouth so I’m getting a weird insight in to being an addict which comes with its own set of social anxieties. I might start marketing a special arm band or hat that denotes that the wearer is, in fact, not a junkie but just has a less than operational pancreas. I’m thinking a nice shade of mauve.

Since being ‘released’ from hospital I’ve done very little aside from rest and listen to my body which sounds about as interesting as it is but I’m slowly learning how important that is to do. So far, my body has said things like “Urrr, I’m a bit scared of cake now”, “Lunch makes me sleepy now”, “Why do you keep stabbing me?” and “Oooh, look, none of your trousers fit now, you’re so skinny”. Oh, and just in case you were wondering, my body’s voice sounds a little like camp Bruce from Family Guy. To silence these mundane voices, I’ve been trying to achieve things each day and my main triumph has been to lodge an insurance claim after our shed and all its contents were obliterated in the recent storms. Yeah, it’s a been an absolute riot.

Moving mercifully forward to today, we had the joy of an Oncology consultation and, sitting in the waiting room, you suddenly realise how blissful mundanity can be. It has often been said that those who have only known peace time take it for granted and I think you can apply that to those that have a normal, straight-forward, healthy life. There’s no bitterness behind that statement and lord knows I wouldn’t wish our current situation on anyone, but if you find yourself wishing for a little excitement then maybe just take a look around and check what you’re putting on the table before the croupier pulls your chips in.

Ominously, my name was called out with complete accuracy and soon we were sat in consultation room 6 – our little home from home, complete with a box of tissues and replica Brian Pollard paintings. Even more ominously, we were left waiting for less than a few minutes (longer than a moment but shorter than a while) before the three amigos arrives; Oncologist, Skin Cancer Nurse Specialist #1 and Skin Cancer Nurse Specialist #2. The full team. Now, if this had been the 80s and the summer holidays then I would have, at this point, been able to choose which page my adventure would lead on to. Choose Your Own Adventure books, however, have laid the foundations for false hope in my adult years and I don’t have anywhere near as much control over the direction my life is going as I had been led to believe. Nevertheless, there were choices to be made whether I had a say in them or not.

The current situation is that my pancreas is still pretty inflamed due to the pancreatitis, as are my lymph nodes and the whole area is generally doing its best impression of my garden shed post-storm but with added fire and horse shit. As a consequence, the surgeons want me to clear up the mess in there over the next five weeks so they can CT scan me again and see what’s left. Once they have a good picture of how far and wide the melanoma has spread across my pancreas, we then hit the fork in the road;

Option 1 – slice me open, whip out as much of the diseased pancreas as possible, stitch me back together and then segue smoothly in to 12 weeks of immunotherapy.

Option 2 – skip the slicing and dicing and move straight on to the immunotherapy (assuming the surgery isn’t actually going to add any benefit).

So, here’s what we do now; spend five weeks waiting for a scan, spend another couple of weeks waiting for the results and resultant treatment plan and then run headfirst down whichever fork in the road is deemed the most fruitful. Right now, we don’t know what is at the other end of this road but, again harking back to the 80s, we didn’t have a Sat Nav and if the road you are on goes off the edge of the map then you just have to keep going. One thing we do now is that we’ll be stopping off for petrol and snacks in Immunotherapy-ville so that will be a new place to visit and send postcards from. At least I won’t be sending Christmas cards though, Christmas is clear unless any other parts of my body decide to just give up and stop working……

THE NEW NORMAL #28 – FRIDAY NIGHT AT THE MEDICAL ASSESSMENT UNIT

For anyone who is or ever has been married, you’ll be fully aware that the first year of marriage features the repeated and mundane question “so, how’s married life treating you?”. It’s a well-meaning question but one that very rarely gets a unique or interesting answer. I am now developing a long and horrifying answer to that question which will make anyone who poses it deeply rueful and probably late for their next appointment. Don’t get me wrong, I love my wife more with every day that passes (she really is the most wonderful woman) and our trip to Mexico was incredible but beyond that my health has been struggling and last week, well, it fell flat on its face….in a gravel car park….in the rain.

Following a thoroughly wholesome half term visiting our friends in the North, we had made a stop over in the Somerset village of Sandford which shares its name with the village in Hot Fuzz but is also home to the Thatcher’s cider brewery. Having made plans to make a swift visit to the brewery shop in the morning before heading to my Aunt’s 70th birthday party, we headed to bed in our Airbnb cottage. All was going well until around 2.00am when I woke with a familiar but unwelcome pain in my lower left abdomen, so I moved downstairs to the sofa and saw dawn break over Somerset. Despite the protestations of my wife and forgoing the cider shop, we made our way to the birthday party in Dunster but I couldn’t eat, could barely keep my eyes open and was about as much fun as fire marshal at a fireworks display. Inevitably, we left early, and I slept from North Somerset to South East Cornwall and then began 5 days of steep decline.

I was uninterested in food (I know, shocker), losing weight rapidly, thirsty beyond anything I’d ever known, I couldn’t get comfortable enough to sleep, I had less energy than a Wilkinson’s AAA battery and even climbing a flight of stairs had me grasping for something to lean on and recover. By the Wednesday, I had to go to the GP for a previously booked diabetes blood test but was also given Co-Codamol for the pain and Omeprazole to ease digestion. On the Thursday, I was informed that I did indeed have diabetes and, to complete my terrible reworking of the Craig David classic ‘7 Days’, on Friday I was slumped in my GP’s office being told I needed to get into hospital quickly. To be clear, I did not make love to my GP.

On arrival at the Medical Assessment Unit, I was asked to wait with my wife on some junior school chairs and my fatigue had reached such levels that I was borderline hallucinating. However, when a young man dressed as a sailor arrived, nobody else flinched so I have to assume it was real. This was one of the junior doctors who was here to explain that my pancreas had stopped producing insulin and, as a result, I was suffering from something called Ketoacidosis. Essentially, without insulin my body could not absorb the energy it needed to keep it running normally so it switched to the back up generator of body fat which was broken down to keep the heart, kidneys and brain running. A by-product of this process are things called ketones which are a toxin that gets into your urine and blood as well as making your breath smell like you were locked in a pick’n’mix overnight. Normal ketones levels are 0-0.6 millimoles (no idea how much that is but I like the idea of measuring things in moles), dangerously high levels kick in at around 3.6 and I was measuring at 5.6 so people were understandably concerned. I don’t remember a huge amount about the discussion, but I do remember the phrase ‘life threatening’ being used and the subsequent look of dread, fear and pure loss on the face of my long-suffering wife. Not the best way to spend a Friday afternoon.

Now, this next bit is third hand as I was too out of it to recollect but apparently I was plugged with two cannulas to fill me with potassium, glucose and insulin, monitors were attached to my chest, a blood pressure cuff was attached to my around and a heart rate monitor to my finger. They tried giving me Oramorph (morphine lite) but I threw it up spectacularly and I deliriously offered to walk from one ward to another when I could barely string a sentence together. I had the easy job, however, to be compliant and let the medics treat me whereas my wife had to look on with those words ‘life threatening’ ringing in her ears as NHS staff moved, and I’m quoting here, “faster than I’ve ever seen them move”. Sorry love.

As my body responded to getting the right stuff put in to it, I started to get a grip on my mind and was aware of a doctor talking to me but I could only listen as words like ‘Pancreas’, ‘ketones’, ‘insulin’, ‘diabetes’ and ‘glucose’ floated around me without settling in any coherent order like ash from a bonfire. I was fairly sure he was real, but I never saw him again and he was particularly chirpy so maybe I was tripping on potassium, who knows? As Saturday morning rolled around and I struggled to move without yanking a tube or a cable, I managed to text my wife and let her know that I’d met her request and not died in the night so that was a good start to the weekend but then the real work began. I was on maximum observations which meant temperature, blood pressure and heart rate checks every hour on the hour as well as finger prick blood sugar tests which left my hand looking like I had been playing catch with a hedgehog (to be clear, I mean using the hedgehog as a ball not throwing a ball back and forth to a hedgehog although that does sound like an ace way to spend an afternoon. Also, to be doubly clear, I would never use a hedgehog as a ball).

Energy levels increased, nausea reduced, blood sugar dropped, ketones dropped and the drips, well, dripped their goodness into me, bringing me back from the brink (a phrase used by more than one medical professional over the last few days). Then my temperature went up a bit. Nothing mental, just a degree or two, but enough for one of the doctors to get spooked enough to get me in for a CT scan and do you know what they found? Not only did I have a mild case of Pancreatitis, but I also had a blood clot on my Spleen which was making it hard for me to digest food comfortably. So, more drugs, more injections and more resting – the most frustrating thing about stuff like this is that you want to do something to help yourself but all you can do is sit/lie and let your body recover which is pretty tedious. For some reason, my brain decided that this was the perfect opportunity to binge watch all three series (and Christmas special) of Gavin & Stacey which took me away from the hospital ward to the magical world of Barry Island and Billericay. I’m still not sure if I enjoyed it though – I mean Bryn and Mick are a hoot, but Stacey clearly needs a bit of a slap and Smithy needs to grow up.

In between sitcom episodes and blood tests, I was visited by the diabetes specialist nurses and shown how I would need to test my own blood, ketone levels and administer my own insulin once I was allowed home which felt quite daunting. Four blood sugar tests a day and four insulin injections (plus ketones tests if the blood sugar is too high) might not seem that much but I’m a man who has managed to eat a donut without noticing in the past so I’m going to need to get disciplined quickly. I have been told in no uncertain terms that I have an insulin deficiency which doesn’t fit in to the Type 1/Type 2 pigeon holes but is closer to Type 1 than anything else so I need to learn to mimic what my Pancreas used to do and then I can live normally. In the future, I may be able to be fitted with a pump for insulin and a skin patch that will constantly read my blood sugar levels to save me the hassle – kind of like a diabetic iron man with a very limited set of powers (none of which could cope with a donut).

A narrow escape, then, as I recovered and got my head around a future of injections and watching my calorific intake more carefully. And I know there will be those among you who will be thinking “well, you are a bit chubby, so you’ve brought it upon yourself really, haven’t you?”, and you’d be right to an extent but this story has a sting in the tail. You see, what the apparitional doctor had been revealing to me (which was later clarified by my skin cancer specialist nurse) was that recent scans of my abdomen had found that the melanoma had yet again spread and, you guessed it, this time it had got in to my Pancreas. The stress my Pancreas was under trying to fight off the melanoma allowed the Pancreatitis to develop which shut down my insulin production and that chain of events is what brought me to the hospital on the Friday. So, the cancer is back again, and the next steps are still a little unclear – total or partial removal of the Pancreas, Immunotherapy or Chemotherapy, chips or rice (sorry, slipped into takeaway mode there). What is clear is that this is melanoma on my Pancreas rather than Pancreatic cancer which is certainly the lesser of two evils and the Oncology team were primed and ready to reveal their plan to me on 12th November, but my Pancreas didn’t quite make it that far.

The simultaneously funny and tragic part of all this is just how normal all of this is becoming for me and my family. We know the best cafes in the hospital, my 5-year-old is unphased by seeing tubes and wires snaking out of his dad’s body and we know how to administer various medications from previous visits which always throws the nurses. We don’t want to know this, we don’t want this normality but it is our normality and we can either meet it head on and deal with it or bury our heads in the sand and deny it. Personally, if there is to be a big cancery juggernaut charging towards me then I would rather be facing it with a chance to jump out of the way than face down in the dirt thinking “what’s the rumbling noise?”.

So, yeah, that’s how marriage is treating me.