LIVE with cancer

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It seemed like a good time to start something new. The news from the meds is pretty crap but hey ho, movement increasingly difficult, some pains are frequent and I know that some of them will last as long as I do. Why then are things funnier than ever before? Why am I relaxed? Happier? More content? What's really weird is that it isn't even slightly drug induced as in the past (not that kind - the necessary ones). Why start writing a blog about a pretty depressing subject? Maybe just one person will read it and take just a little comfort from the fact that it doesn't have to be scary; it doesn't have to be the end till the The End. Even then maybe there's an epilogue.....

A BIT OF HISTORY

OK so maybe I'm just dumb, you know, too thick to understand? Quick history. Diagnosed colon cancer 2000 (I think - but it's not an important date) Stayed pretty laid back and wondered when the brain would start to get frazzled by the seriousness of it all. Maybe this is an important tip. Total, complete and absolute honesty with everyone about the cancer, the treatment - everything. I have reached the conclusion that most people screw up at this point. Small secrets and untruths (you know - lies) put everyone on the defensive and make them extremely uncomfortable. Funny thing is that if you show people the respect of being honest with them, they respond by being open with you. Even at this early stage, my best mate was asking me to sort out his PC because he didn't want to leave it until it was too late. It lightened the conversation but I knew the bastard meant it.

ASK A LOT OF QUESTIONS

As it happened we did all this crap in a foreign language. I distinctly remember telling my consultant that the only things I was frightened of were things I didn't understand. I didn't understand him because he was speaking French. Actually that's untrue. Because he could see I wanted to understand, he was brilliant. Took loads of time to explain options and likely outcomes (surgery, chemo, radio, operations, death etc) and every time I saw him (and this applies to every doctor since) I left in a happier mood - even when the news was worsening, grim, bad or downright shitty. I have heard many people protest that if they had cancer, they wouldn't want to know. This is really, really dumb. Have you ever had a nightmare about something real? For almost everybody, the answer is NO. It is the unknown, the shadowy stuff, that normally causes fear. Human beings are actually pretty good at handling real situations and you will probably surprise yourself.

FAMILY

Ok so you can handle what is happening to your body. It ain't doing what it should and it's not looking like a picnic from hereon in. So you feel sorry for your situation, you regret your wasted life and you sink into a depression. Don't you dare, you selfish bastard! The only people who deserve any pity are those poor souls who will take care of you and watch helplessly as you eventually begin to slide. There's no need to think that you should just accept it all and give up hope. On the other hand, accepting that this could be Gods way of telling you that you're not his favourite bunny can actually be quite positive. Odds are that like me, you may get a pleasant, if possibly only temporary surprise.

THE TESTS

After a few weeks came the numerous tests. Just about every oscopy and scan known to man. Take note because this bit is really important! IT DOESN'T HURT! Saw loads of people frightened of what was about to happen to them because it is the unknown. My natural disposition to cross bridges just as they collapse underneath me helped loads. Each time I was pleasantly surprised. Slight discomfort was the worst that happened, but please, please, leave your dignity at the door. Nurses and doctors have almost certainly seen far worse, more ridiculous, fatter, uglier more ungainly creatures than you. It's not fair to expect them to act surprised when they examine your body. It's like a guy in the body shop screaming or laughing because you've got a dent in the front wing of your Volvo. They see it all day, every day. Give them a break. The only embarrassing thing is BEING EMBARRASSED!

RADIO AND CHEMO

So the docs announce that to make you feel better, you are going to be nuked. For good measure they intend to fill you full of some seriously nasty chemicals which you are going to volunteer to carry around with you in a little bottle which will be attached to you via a tube. To make it easy they will put a plug in your chest with a tube which goes up to your head so the chemo can be with you 24/7. Oh and would you mind doing it for say, 5 months? It doesn't get much better than that. Now here is where there's a real doozy of a question. Do you accept their very attractive offer or not. Hmm. Hair may fall out, bits may fall off, you'll be dead tired and sleep all the time plus you may get a bit ratty. But surely there must be a down side. Yep you'll probably lose a load of weight. No brainer! Now wait for this. No bits fell off. Often felt pretty tired but not enough to stop me from going to my local bar/restaurant, using the internet and generally enjoying life. My "Borg implant" as my daughter calls it (the place where the chemo is delivered into my system) was no problem. Did my hair fall out? I started to go grey about 30 years ago but after 3 months my wife suddenly started laughing and eventually told me I looked like Mr Spock. My hair had gone thick and turned almost jet black! No doubt you will find it impossible to believe that someone with such a sunny disposition as mine could become irritable. Strangely enough my wife disagreed. Perhaps just a couple of times I .........

I just remembered something really funny. Having had my chemo pump for a couple of days (most people don't have these apparently) I woke up to find that in my sleep I had caught the tube and it had become disconnected. Even my basic physics confirmed that it was likely that the red stuff on the sheets was the liquid that was supposed to stay inside my body and not come out through the tube. I was a tad concerned at this because I know you only have a limited amount of this stuff and its quite important that you hang on to quite a lot of it. The telephone advice from the hospital was to clean and reconnect it (implying, you dumbo - of course it's not normal). No panic, just pop in when you have a minute and we'll have a look. Moral of this little bit, is to forget everything you have seen on TV. When you get used to all sorts of different bits of kit attached to your body they lose their mystique. I can't bleed my central heating boiler but I sure as hell know how to regulate a drip.

PLEASE SIT DOWN.....

Doctor says very slowly and gravely "I'm sorry, you don't have long to live. You only have about er ten.." Quickly the man interrupts and demands "What? Years, Months, Weeks?" The doctor continues "Nine..Eight..Seven" I told this joke to my consultant when I could see in his eyes that he wasn't about to tell me I'd won the lottery. I told a similar one in French when I was first diagnosed. This may seem a flippant or even stupid way to deal with a life threatening situation. If it was bravado or bluster I would agree however my personal theory goes like this. The guy in the white coat, on the other side of the desk, gets up several days of the week, knowing he is going to have to tell people that their life will end prematurely. No amount of cash, free stethoscopes or drugs can make that a good way to wake up. He wants to do his best for you; he will use all of his hard learned skills, so please give the poor sod a break. My experience is that he needs to laugh as much as you. Help him. Enjoy life. All of it. Even the crap. LAUGH! I also found with one consultant (they are often little Gods with their minions) that when I wound up this internationally known surgeon about his shaky hands, incompetence and frequent visits to the golf course, it put him and his whole department in an amiable frame of mind. He is a 20 hour a day, 7 day a week guy who is incredibly skilled. He is also a human being.

UP TO THE OPERATION

End of 2000 became ill. Started to live in the bathroom and although the decor was rather pleasant it was not done for this alone.

Visit to my doctor followed 2hrs later by X-Ray followed by doctor 1 hour later followed by appointment with consultant 2 days later. You may not appreciate them devouring the legs of small frogs but they sure as hell get this right in France. Really nice guy who talked about ganglions and polyps (in French) and lots of other non cancer like things. Seemed pretty relieved when I asked him about the bloody great tumour I had seen on the X-Ray.

As I mentioned I then had tests. A lot of tests. And then some more. The probes and cameras inserted into pretty private places were not too bad. It was the camera crews, soundmen and extras I didn't like

This is a bit out of context but it has been bothering me. WHY THE HELL DO HOSPITAL GOWNS FASTEN AT THE BACK? As you are presumably there because you are not exactly feeling 100%, why do they think you can fasten several tie strings behind your back? I think they must have CCTV in the changing rooms and sit there howling with laughter as a 17 stone steel worker (that's not me - I don't work in steel) struggles to get into a size 8 mini dress which has 7 unaligned strings to tie. They then struggle to examine/operate on you because most stuff involves working on you from the front. I want an answer.

Diagnosed cancer of the colon. Large tumour which was unfortunately very low and therefore difficult to treat. Proposal was to treat pre operatively with chemo and radio for several months and then start cutting. This was to involve a temporary colostomy for a few weeks (turned out to be illeostomy for 8 months) while the bits rejoined themselves. My social calendar at the time was looking pretty thin so this didn't seem the sort of party I should miss. I was a tad annoyed because swimming would be out for the summer. The surgeon assured me (and how French is this?) that I would still be able to drink wine. My wife Kim, tried to put on a brave face but was hit pretty hard and the rest of my family must have used a Star Trek transporter to get to me so fast. I merrily went on thinking that soon the reality of this would hit me and I wouldn't be able to handle it. This was before I knew about the other me.

Radio and Chemo was a breeze as already discussed. A bit inconvenient because they refused to replace the bottle of 5FU (chemo) with malt whisky on my occasional days off but there's more than one way to skin a cat.

I must at this point mention my very good friend Colin. I think he was partially responsible for the development of the second me. As I was completely open about everything that was happening - so was he. During this time we discussed and laughed about (often to the absolute horror of his wife Chris), the ins and outs of cancer, illness, dying and more importantly to him, how he would keep his PC running when I was pushing up daisies. My advice to anyone with cancer is to find someone like this. Your close family are so deeply affected on a practical and emotional level that an outside influence (even if like Colin they happen to be close to the Devil Incarnate) is important. If you think you can benefit from my approach to cancer, find someone who makes you laugh. Colin is the funniest man I have ever met.

THE CRUELLEST CUT.

Over 7 hours and 450 stitches and staples was enough to make even me wince. I can't remember much for several days but know I was packed in ice (which Kim had got from the supermarket), sprayed with iced water and had a large powerful fan 2 feet from my head. I do remember seeing my surgeon a few hours after the op and he looked like hell. Sweating, sunken eyes and obviously completely shattered. At least I had the on-demand morphine. 10 days of no food or drink carrying a drip around were not good for me. I get bored and ratty as quickly as Gordon Brown waiting for the Hutton report so I guess this is where the other me stepped in. There is no way that I could handle pain and that level of boredom at the same time. In retrospect the answer was simple. Give it to someone else. And I did.

POST OP TO NOW

Due to some pretty weird post op problems I decided to spend a while in bed. 5 months on permanent morphine and pain killers, eating nothing. Lost over 40 kilos in weight (jealous?) and looked like a stick insect. I do not recommend this. Several times I was within a few hours of being very dead and each time my wife managed to shock, threaten, plead or persuade me back to life. I really knew nothing. I suspect the other me did but kept it quiet. Eventually became stronger and clawed my way back.

Returned to the UK early 2003. Several hernias a bit of a problem but they have just been fixed.

After a bunch of advanced scans and other tests we found that the original cancer had spread to both lungs (probably), liver and (probably) pelvis. The other me was quite looking forward to having treatments for these niggles because it would have given him a while in the spotlight, however the advice was that operations were out and chemo/radio would probably (that word again) only be a holding measure. Time? 6/12/18 months maybe but maybe more. It made a change from probably.

Now this is really decision time. Hang on to life? Try everything and anything to extend it? String it out for as long as possible so that you are able to breathe? I completely understand those who take this course and pondered very long and hard myself. I decided I would pass. I have been offered and accepted the option of a course of chemo which should have few if any side effects and may give me another few months, but that's it. This could well give the wrong impression of my view of life. I love it. Every single minute, good or bad. A joke I heard many years ago sums up my philosophy. "If you don't drink, smoke and hang around with loose women, you don't live longer - it just seems like it". It is quality, not quantity that matters. I know that when I go, it will have a devastating effect on my daughter. Whenever it happens. The way I see it is that the less time she has watching me die - the less time before she can start to get over it - the better. She was aware of everything the first time round but we have made the decision that she now finds out at the last possible moment. We want her to have as many days as possible, happy, normal, with her father. The same applies to my wife Kim. What happens afterwards when I can't help. I believe that I deal with our situation in the best way possible. I have no answers to this bit. It's the only time I cry.

THANKS TO

I have been incredibly lucky to have the support of a strong family. Wife, daughter, father, brothers through to almost long lost cousins. My illness has bought me genuinely closer to all of them. Their help - practical, financial but most of all emotional has been inspiring and even healing. Even though we were in different countries, my 2 brothers were by my side so fast they must have got whiplash from the car's acceleration. Me being me I laugh and have fun with them all. I'd hate you to think that this is just a mantra - it isn't. I'm the happiest, most content and relaxed "dying" person on this planet. We're all "dying" but just some of us on different time frames. I might even confound them all and stick around longer than expected. There is hope but I don't spend my time hoping (or even hopping for that matter). I've learnt to dream. Not in the abstract sense, but I have literally learnt to control what I will dream about. I guess most people have had dreams where they can fly. I have probably had these wonderful dreams a couple of times a year throughout my life. Now that I can concentrate on living I can switch it on in any dream I choose (just for the record I am currently not using any drugs which would account for this, I am not currently in massive pain and I haven't joined the Liberal Democrats). I digress. I am in absolutely no doubt that without my wife I would be dead already. A couple of years ago she cared for me and literally dragged me back to life when everyone, including the doctors, had just about given up hope. Both her and my young daughter had to cope with my complex medical problems, the practical and financial problems of being in the situation in a foreign country and the very strong likelihood that I would die in the very near (sometimes thought to be hours) future. They were just amazing! This goes back to a previous point. If you ever, for one nano second, feel sorry for yourself, just simply be ashamed. Sorry to turn this on its head but this ISN'T ABOUT YOU. It's about the people you will leave behind and soon you will have absolutely zero input into the situation. Use whatever time you have to make them happy and for Gods sake MAKE THEM LAUGH. If you have devoted your entire life to being a miserable, selfish, mean and entirely unattractive excuse for a human being, knock it off now! If you are bankrupt, don't have a friend in the world and your family has deserted you, get off your ass and make somebody else laugh. You get just one crack at this. You can't die happy if what you leave is a world of shit and grief. If at some stage in the future my name comes up and it elicits a wry smile from someone that's good. If it makes somebody laugh, you'll hear me jumping on the clouds.

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tags: cancer treatment  alternative medicine  terminal illness  terminal  cancer humour  nhs  laughter  prostate  cancer humor  scanner  cancer  politics