I’ve Changed my Mind (Regression to a past life)

I’m back at home, the operations are done and there is nothing left for me to do apart from get better.

The visit to the abdominal surgeon was my next big landmark. I would find out the results from from the liver segments and gallbladder that were removed. We arrived  early and sat waiting nervously for news on my fate.

The nurse called my name and like a robot I got up and followed her. As I said hello to the surgeon I tried to read his eyes but nothing was coming through. Sensing my nervousness he said, ‘It was pre-cancerous, you are going to be fine.’ He went on to tell me that although it looked nasty, it was actually OK and may or may not have grown into a cancer. I didn’t really react other than to say ‘thank you’. Like my original bad news, I was in a daze and not really taking anything in. ‘No chemotherapy’ were words that seeped into my struggling awareness and before I knew it, I was walking back to the car.

The sun was shining and summer had arrived, I should be ecstatic but I was numb. Not for the first time this year, I was in shock. Sadie was talking nineteen to the dozen about a future and looking forward but I just felt like crying (again).

Dealing with the normal things in life can be tough, but dealing with your own mortality while undergoing the treatments for cancer can be overwhelming. It is a constant roller coaster of emotion and energy.  For any of you going through this now, you have my respect, best wishes and all the good energy I can send.

My chance of survival post operation is now much better, I have a 92% chance of living five years or more. While it’s not over for me, I have been very lucky and it all came down to one x-ray and a great GP (general practitioner doctor) not forgetting the surgeons who were able to act in time because of an early diagnoses.

I can’t imagine that x-rays cost that much, surely it is more cost effective to screen people using x-rays and blood tests than treat them after they have developed cancer? The system in this country seems reactive, I wish it could be more proactive to help some of the people I have met on my journey.

The world cup and the unusual sunshine have kept me entertained over these long days and I am starting to regain a sense of myself and who I am, this had been one of the many casualties during this episode in my life. As hard as I tried otherwise, I became an object on a production line of operations and procedures, only able to look forward as far as the next episode.

Today, back in real time, things have changed. I no longer have the sense of foreboding that accompanied me like a rucksack on my back. I no longer have the time limiting feelings that were thrust on me. Today I am fine, I am making a good recovery and can do many normal things. My sense of mortality is more remote and abstract, just like it had been before all of this started.

My next scan is in about six months and I have no doubt that the first few scans will strengthen my distance and disbelief in death, unless of course it all goes wrong. You understand, dear reader, that I can’t allow this to happen. I have to remain positive, I have to believe that I will be OK.

And so my mind has changed…I have almost gone back to my previous life. Yes there are aches and pains, yes I can be short on breath, but in general I have hope and that counts for a lot.

This is not the end of my story, I will be updating this blog from time to time, but I will be concentrating on writing a book, the one I promised I would do one day. I had no idea when I started this blog how things would turn out, I fully expected to die and in the very near future. I have been really lucky and if you have cancer you can be lucky too, so never give up hope, whatever they tell you. So Sadie and I are off to walk by the Thames once again, enjoy the sunshine and maybe an ice cream, this place will always have a special place in our hearts.

To end this chapter I would like to dedicate this blog to all my family and friends who have supported me through the most difficult times in my life and a special dedication to Sadie, without her love and care I would never have made it through this. Talk to you soon,

Stuart

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Why is the Sky so High?

Hello, round two is done! A very different experience to my last operation and at a different hospital.

I checked in and was sent to a pre-op ward to wait and meet the doctors and anaesthetists. Modern medicine is marvellous and there are many choices of treatment. I discovered this from the anaesthetist when he came to visit me in the pre-op ward. He asked me which type of pain drugs I would like to have and explained the options very clearly. Essentially it was a choice between an epidural or morphine based relief both with side effects and pros and cons but apparently no outright winner. The anaesthetist seemed to be leaning towards the epidural (usually associated with childbirth pain relief) but it was going to mean a catheter and some unpleasant dangers if it went wrong. Luckily for me Sadie was on hand to remind me that I had just been through thoracic surgery with ‘just’ the morphine drugs and suddenly in a light-bulb moment it was clear that I needed the same again and that’s what I chose. I’m glad I did, but that comes later.

I came round in the intensive care unit (ICU) plugged in to numerous drips and monitors, four tubes into the side of my neck, two into my right arm and two into my left arm plus half a dozen monitor wires and oxygen tubes up my nose. My bed was parked by a huge window which gave great views of the world outside, this will do for a week!

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No drains, very little pain, thank you morphine, and a nurse offering me jelly (jello) to soothe my throat after the tubes that would have been forced down it. On the downside, no TV and some noisy machines going ‘ping’.

The chap in the bed opposite me was in agony  and my neighbours were complaining, apparently they had been given epidurals and were feeling the side effects. Great decision not to have one on my part.

The next day there was a surprise for me. My surgeon came to visit followed by a gaggle of young doctors. He asked me how I felt, checked my charts and discharged me. What! But I’ve just had my gallbladder out and two sections of liver and I’ve got a great view from the window! Yep, you’re fine. Apparently I had made a really good recovery, post op, and apart from pain and discomfort, which were treated by a cabinet full of strong drugs, there was no need to keep me in bed. In fact just the opposite, they wanted me mobile and coughing as soon as I could.

Of course the most important question in my mind was the identity of the lumps they had removed from me, but that wasn’t due for another ten days. I had survived major thoracic surgery followed by abdominal surgery six weeks later and, to be honest, all things considered, I wasn’t feeling too bad in my drug induced haze. Had my lung cancer travelled to my gallbladder and liver? Was it already too late? How was chemotherapy going to be? I had a lot of questions. And when it comes to your own mortality, I think you have the right to have lots of questions.

The caring services in the UK are outstanding, whether with the National Health Service or private medicine, with plenty of people waiting to answer those questions. My advice, for what it is worth, is to keep asking questions, the answers will help you.

This all happened nearly two weeks ago, the truth is, that once I got home, the after- effects of two operations, back to back, caught up with me. Not only could I not write this blog but I couldn’t do very much at all. It was very frustrating to have been making such good progress only to start going rapidly backwards. My next blog will catch you up to to real-time and the present day.

Normal Service will be Resumed Shortly

Hi, sorry I haven’t been in touch for a while, life has been busy.

Tomorrow is big op number two and it’s time for more pain and wiggly tubes to go in me. I have a day or two back in intensive care again followed by a week in the ward if everything goes well.

Keep watching out for updates, I will be typing again as soon as I can. In the meantime stay focused on living your life and forget all the office politics and rubbish, it’s just that, rubbish.

Pay it Forward or time to Cough up

The film ‘Pay it forward’ was a story of a boy who did a favour for three people. He didn’t expect anything in return but rather asked that they in turn did favours for three others.

I have been shown a lot of kindness by relatives, friends and complete strangers who expected nothing in return but were happy to give their time and love to support me in my time of need. There is nothing in this world that makes you feel more valued than that.

This blog is, in part, is one small way in which I am paying it forward. In the hope that a fellow sufferer is getting some benefit from, what I think, is a frank account of how it is. To feel you are alone and different from everyone else is perhaps one of the nastiest sides of cancer and something which you should resist at every turn.

Imagine a world in which everyone paid a good deed forward or even just practised civility. While I have highlighted this topic it is in no way to attract praise. The deeds I get the most benefit from are the quiet ones where no one knows that it was me. Yes I suppose the cynical view might be that I am doing it for myself and the pleasure it gives me but there is something beyond that, something beyond words which makes it special.

Today I read a about a seventy-one year old man who had his credit card rejected at a superstore as a result of a pension mix up. He left the shopping and went home to get some money. On his return to the shop, the cashier told him that a stranger had paid the bill. The stranger left no details.

I belong to two groups containing some really wonderful people. The first was an ‘Action for Happiness’ group local to me. We have kept this meeting going beyond the course and I count these people as friends each delivering little acts of kindness to each other in their own way. The second group I have mentioned previously, a local Tai Chi group, from where I have not only received instruction in Tai Chi but also a lot of spiritual help and strength.

Every day I make more progress and walk a little further. Out of the four wounds only the last chest drain has a scab, the others having healed nicely. The large scar, aka shark bite, has some underlying numbness and pain that radiates from under my left armpit round to the centre of my chest. This is a really sharp, but thankfully intermittent pain. I’m also getting a muscular, dull ache from my upper spine and ribs. This is all normal and consistent with this stage of the recovery.

Distractions are key to surviving cancer. With yet another operation on the horizon and the final word (for now) about the spread or otherwise of this nasty disease, my situation is by no means a safe one, so I have delved into my toy-box of random pursuits. What did I drag out of there? Well I have decided to grow a beard! My last attempt was in 1982, so it’s about time. At least the itching keeps me distracted from my other aches and pains.

As I’m off work and generally in the house, it was a good opportunity to get past the spikey ‘child molester’ stage and head towards the George Clooney (who am I kidding?) stage as quickly as possible. It also gave me a wonderful distraction researching the best beard oils, clippers and everything else the smart man about town the house needs to look smart. Sadly the current result is more like a Castaway Tom Hanks and makes me jump with surprise every time I look in the mirror.

Coughing, this is deemed a necessity by the medical staff who look after me. It is important to prevent build-ups of nasty things in my poor suffering left lung. As if it hadn’t been through enough, they want me to torture myself with deep, body shaking, explosions. This is how it goes:

A large, slow intake of breath starts, wheezing like an overfull vacuum cleaner. This is accompanied by my face gradually changing colour to an unhealthy sweaty pink as my shoulders and back arch into the Hunchback of Notre Dame. My knees start to bend and shake ready for the imminent body wrecking convulsion. The cough start in the recesses of my bedroom slippers, my eyes shut tight to prevent them launching like satellites into the unknown, a grimace on my face that could win any gurning competition.gurn-226x300_6It travels up my legs turning them to a wobbling jelly, followed closely by my belly reverberating in sympathy and a sound like a cistern emptying as my stomach runs for cover. Building slowly, the cough reaches my ribs rattling them like a rusty gate, this accompanied by a sound like a broken car starter motor doing its best to turn over a reluctant engine. Faster and faster it gets until in an explosion of ignition, the cough begins the final climax. Only my mouth is holding it back and at T minus one, the cheeks expand like two ripe tomatoes, while my face changes in waves of colour like some sea creature from the deep. Pink, to putrid green, choking red, through to varicose purple. I start to see sparkles even though my eyes are shut and a bright blue vein becomes prominent on my forehead. After a Herculean attempt to contain the cough, I can do no more without risk of farting, the cough explodes out like the ignition of a rocket. Haweerareeeeckeckeck! Having completely exhaled all traces of air from my lungs, there comes a point where the cough is coming out but I really, really need to breathe in. Eyes bulging in panic as I try to breathe through my ears, the first traces of O2 hit my burning lungs and risk a further cough. Finally like a twenty a day smoker, the air whistles back into my burning lungs. My head spins and the kindly nurse says, ‘Well done, can we try that again?’ A weak smile crosses my face but I’m sure the nurse can read my eyes and these are saying, ‘You have got to be f*!#@ kidding me. Not again, not by the hair of my chinny chin chin.

 

 

Spectre at the Gates of Time

I have now been out of hospital for a couple of weeks. My chest drain was removed the other day with some before and after x-rays to ensure that everything was where it should be.

The x-rays were fascinating, my chest cavity was very normal at a quick glance, but on closer inspection and with some prompting from my surgeon there were some subtle differences. My left lung now fills the entire space, despite being a third smaller, my diaphragm has compensated by angling itself diagonally from my intact right lung towards the shorter left lung and my rib spacing is different, left to right. It’s amazing how the body compensates and adapts so quickly to the new circumstances.

Happy with the results and satisfied my chest drain was now just an ornament hanging down my side, the surgeon removed the drain and folks, I have to say, this is the only time he has told me something which wasn’t strictly remotely true. I lay on my side, breathed out and held my breath as he pulled and my God, it hurt like a motherbird. No pain killers, no local, just pure, unadulterated pain as sharp as a stiletto knife. The sort of pain that starts of bad and slowly builds, over a couple of seconds, to mind numbing agony and then it was done apart from a few stitches to close things up. ‘You will feel some pulling’ he said, for f!@# sake if that was pulling I would hate to feel a sharp scratch or a little pain.

Anyway, that was that, the cancer is gone and the first stage of this mind bending experience is over. I never really had a choice, it was either this or die within a year. Despite the discomfort I am still feeling, it is nothing compared to where I was a few weeks ago, standing on the edge, with a dizzying, sheer drop to eternity below me and no where to go. It was the surgeon’s hand that pulled me back from the edge and although I know this is only part one of the two procedures, it is an overwhelming relief.

Many of you reading this, I’m sure drive cars or take part in adventurous pastimes, as did I. There is often the thrill of coming close to an accident or pulling off a gnarly jump or turn. There is the exhilaration of getting away with it, escaping death, often through skill or dumb luck. Let me tell you (for those of  you who have never suffered from a terminal illness), this is not the same. If, by some miracle, you get a reprieve, the feeling is of exhaustion and wobbly knees. There is no exhilaration, no wild laughter, much more likely a release of emotion, crying until your soul has run out of tears.

I have been trying to understand what the difference is for me and I think it is this: Exhilarating sports or pastimes come with a risk of serious injury or death but the reality is that it is a calculated risk and the odds are very well stacked in your favour. When you are told you have terminal cancer, the odds, the reality, is that you are going to die, for real, Do Not Pass Go, final, The End.

If you are lucky enough to be in the infinitesimally small number of people who get a second chance, it is not relief, but a guarded acceptance that it hasn’t got you this time around. Your view of life and death is altered from that of everyone else, for ever. The dark spectre that followed a pace behind me when I walked along the Thames only a few weeks ago, is still there but he is on the horizon and only just visible.

Lets do the Time Warp again.

Hello, its me again. Sorry I have been a little quiet, I have been snoozing in a drug induced haze, not the purple sort like Mr Hendrix (ageist reference) but the relief from the roving monster that is pain. Anyway how are you? Even the most mundane of 9-5 office work is exciting compared to mine and seems like an adventure.

The internet went down ‘for improvements’ locally which meant my ‘opiate for the masses’ or Netflix as it is more commonly known, was out of reach to me. Watching back to back ‘Friends’ or some other mindless entertainment is so soothing and without it the pain monster lurked with renewed strength.

Feeling sorry for myself? Yes there have been plenty of times when I have asked myself ‘why me?’ This is so unfair, I never do harm to anyone, why has cancer picked on me?The undeniable truth is that this disease statistically will either affect you, dear reader or someone your care deeply for. It’s not picking on you but clearly it is connected to the lifestyle and environment you and I share. My specialist told me that if you breathe, you can get lung cancer.

Our little planet is suffering as a result of our species and as an organism, it is likely to do something about us. Looking back through time, we are not the only dominant species that has existed on the planet, nor will we be the last unless we use our massive brains to do something about it. Pollution will haunt the living, natural disasters will cull those who cannot look after themselves, the list is endless but in the end the planet will survive as long as it can. I’m not suggesting that there is an intelligence at work here, this is no different to a flower bending towards the sun for energy and life. You and I are pathogens to our blue planet, a cancer of sorts, that will have to be removed.

I have been released from hospital with a portable chest drain, the holes in my lung are still open in places and have not quite healed yet. There was no point in keeping me in hospital any longer, all I needed was time. Time, it keeps cropping up, the one thing a cancer patient wants to control. Oh and talking of time, I am still writing about the past, I will drop a hint when you and I are in the same time zone again. Until then, you don’t want to know what that idiot Trump has done now…only kidding.

It’s about time I had some good luck and as is typical with my life so far, it has gone from the sublime to the ridiculous, I have won the lottery! National-lottery-results-UK-draw-numbers-latest-results-checker-984198No not the one you are thinking of with the luxury yachts and overflowing champagne glasses, no this one is much more real and mundane. My results are in…

The cancer was a non small cell adenocarcinoma, apparently the most common type and relatively slow growing. As a result of its slow growth and lack of symptoms, by the time most people discover it, it has spread albeit slowly, a long way. The surgeons removed the cancer as well as an area three and a half centimetres around where it was in a lobotomy. The also removed the lymph glands. The results show that because I was lucky enough to catch it early it hasn’t spread to the surrounding tissue or transported itself via the lymph system to anywhere else in my body. This of course is tremendous news and would be a stay of execution if it wasn’t for the Rocky Horror waiting in my gall bladder/liver.

In the meantime, I can only count my blessings and luck, that my doctor sent me for an x-ray after a protracted cold and cough, if you have a cough my friend, please ask your doctor for a chest x-ray, it may be the best lottery ticket you ever bought. Can I win the lottery twice? They are pretty tall odds. Before I can catch my breath (literally) I will be back in for surgery at the beginning of June and the removal of my gallbladder.

#Lets do the time warp again#

The Theory of Relativity

If you could go back in time to change things, would you? The trouble with time travel is that once you change even a single strand, even more things can unravel and history can be re-written in a way that no one ever envisaged. I read an article about killing baby Adolf Hitler, which on the face of it, seemed to be quite a sane thing to want to do. On the other hand, if you were actually able to do this, we have no idea what sort of history would have followed. Would a different dictator have raised his or her head? Could things have been far worse? If you went back in time, how would those around you feel about killing this innocent baby, would it appear to be insanity?

On being told you have cancer there is the inevitable self-inquest. What could I have done differently? If I could go back in time what would I do, so that I don’t end up in this position? It’s very human, but ultimately futile as with the idea above.

My writing and real-time have gone back out of sync, so I am writing about a few days ago. I am back on the ward, or more accurately, I am in a room. I am attached to an intravenous pain relief drip as well as a patient operated morphine pump. I am also connected to two chest drains which bubble and gurgle in containers next to my bed.

The morphine pump is my friend but also gives rise to some interesting, out there, thoughts. Like soap bubbles created from a tiny plastic hoop, these thoughts are difficult to follow and even more difficult to remember or write down later, but you do become blase about the pain and discomfort while exploring some interesting thoughts.

It looks as though time travel is impossible and it’s probably just as well. The famous time travel party organised by Professor Stephen Hawking, in which he sent out invitations after the event, was attended by no one at all, seeming to prove with a great sense of humour, that it was all wishful thinking.

Having an operation and being incapacitated, for even a short time, brings with it helplessness and reliance on others to get you through the day. It is a time when family and friends play such a large role. They may not know it and you may not realise it, but remaining connected to the present and the reality of the here and now is a strong medicine that helps to overcome that helplessness with a dignity and sense of self, stronger than any medicine.