A response to Chris: Sometimes, fear is not the killer…

Hi folks

I’ve just read this article by Chris Evans in the Mail Online: Fear is the killer… not the cancer: Chris Evans opens up about his health scare.

It’s a good, frank and very welcome article and I hope it helps many people get over their fears and get those early symptoms of possible Bowel Cancer checked and sorted. Assuming, that is, there are early symptoms to spot…

If only it was always that simple.

I am 43, fighting advanced bowel cancer. I had a major emergency operation  in 2008 and am now on my 3rd, 5 month chemo regimen since then. I had no obvious symptoms, no bleeding, no family history, nothing that raised suspicions. I was quite tired but I had  1 and 3 year old kids: who wouldn’t be tired? I am vegetarian, a moderate drinker, not overweight, took exercise. In fact I was running when I realised I felt odd and had to stop. Within 12 hours I was in severe pain and heading to Casualty with suspected acute appendicitis. The appendectomy, turned into a 5 hour operation to remove a large tumour, which had spread outside the bowel. So it goes.

I’m glad Chris has avoided this by getting an early warning. And I hope it’s not assumed that all those like me who are fighting advanced bowel cancer have ignored early symptoms or kept them secret, through some old-fashioned male pride. I just didn’t have any early symptoms!

[Update: Note also that increasingly, persons in their twenties are getting bowel cancer: They may well go to the doctors with symptoms, which are disregarded on the basis that they are "too young". Bowel cancer is no longer a disease just of the old or late middle aged!]

Cheers

Tim

5… no, okay, 4 good things about having cancer

Despite cancer being hell,  focusing  on the positive amidst all the negative can only be a good thing…

There is always a piece of fortune in misfortune. (Japanese proverb)

But hang on, surely there is nothing good about having cancer? Cancer is shit.  It screws up minds, families, friendships, income; assumptions… most things in fact, especially your health. SHIT. Capital S, H, I and T.

Well, yes, I have to admit it is horrible in the extreme and if (when!) you get through it physically, there are various mental issues to deal with. It never really leaves you. You might go into remission, or be given the “all clear” but it just takes up residence in your mind and torments you, day after day.

With time, it does get better, check-up by check-up. As you move onwards, living with cancer, you  find ways of keeping positive; of preventing the threat of its progression or return from consuming everything you do. With enough time, life can return to normal. It did for me, gradually, after my Non-Hodgkins Lymphoma diagnosis when I was 20 years old. By the time I’d reached 26, check-ups were  a formality (though still nerve wracking!)  and life was good. By 31, the check-ups ended; result! My more recent experience with bowel cancer is different: the bastard just won’t go away and I’m now on my 3rd chemotherapy regimen in less than 3 years. So far, a gradual return to normal has not been possible. In fact, now, having cancer and chemotherapy is normal and it’s apparent permanence is horrifying.

So, amidst all the stress and uncertainty it is vital to stay as positive as you can. The physical illness aside, beating cancer, in fact, just coping with cancer, requires that you stay ahead in the mental battle; that you laugh in it’s face, stay solid and focussed while it follows you into the office, to the playground with the kids, everywhere; it’s stinking emaciated hand forever resting on your shoulder as it shuffles along behind you.

Perhaps one way to help positivity is to think about  what good may have come from the hell you have been or are going through. Perhaps. So, I set myself the task of finding 5 good things about having cancer. Difficult – but I had 20 years as a cancer survivor before bowel cancer struck me down in 2008, so plenty of experience to draw upon. Still, I only thought of 4.

Here then, are my 4 good things about having cancer. These are my 4 things, based on my experience; 4 things I focus on to help me see the positive amidst all the anguish. Others may think I’m off my rocker. That’ll be because I am.

1. It let me know what is really important.

Most people, I’d hope, would at least have an inkling as to what is really important in life but often the important things are taken so much for granted (certainly in our Western over-consuming, more-than-comfortable existence). People start getting hung up about meaningless junk, considering as important the most unnecessary  material things. Or they start ridiculously stupid unhealthy habits, any thoughts for what they might lose if things go wrong, hidden away in a box in their head.

Being confronted with a life changing, life threatening incident changes all that. It doesn’t have to be cancer but for me, it was. I was just 20 years old when I first got told I had cancer – not an age where you have accumulated much wisdom about the true meaning of life. The news and what followed changed me forever and opened my mind to what really mattered in life. And it was a change for the good.

I’m not going to patronise you by listing what is truly important in life and what is a distraction. You either already know, or you don’t and if the latter, me telling you won’t make a jot of difference.

2. I know who my real friends are.

I know, I know, this one’s easy! You just look at all the “friends” you have in Facebook and then check which of them ever actually interact with you and your posts. Well, things change when you have cancer. Suddenly, some  ”friends” stop posting to your wall or commenting on your status. Some “friends” even start disappearing from your “friends” list (especially, I guess, if you talk about your cancer and treatment in your posts). In the real world too, similar things happen: in the supermarket, “friends” suddenly change direction and shoot down the canned soup isle (I used to let them go, now I hunt them down). My better friends often make excuses for them with comments like, “They probably just don’t know what to say”, or, “they might be scared or confused about what’s happening”. Well, “Hi Tim, fancy a can o’ soup”, would do; and I am pretty scared and confused myself, so a chat about the pros and cons of own-brand tomato soup compared to Heinz would be a nice respite (even though we all know it has to be Heinz).

It happens the other way too, though. Heading back to  Facebook, we all have those “friends” who, actually, we don’t really know: the bloke  you worked with for a month in the Summer of ’95, or the friend of a friend you included in your round in the pub and got chatting to about guitars. Well, some of them stop being a semi-anonymous entity in the list of “friends” and actually take an interest in you; they send good wishes, they offer support, they make you laugh! Off the computer, this happens too. A work colleague you have very little to do with, will make a point of visiting you at your desk, just to say you are in their thoughts or to say they are there, if you need anything. Magic (though, there is no magic of course, but that’s for another post).

It’s great to know which friends actually care enough to put concern about your welfare above their own hang-ups. They are the true friends. I feel a Facebook “friend” purging session coming on!

3. I’m a better person for the experience

Favourable circumstances may be pleasant but they rarely strengthen one’s character. The greater the person, the greater the adversity he or she has overcome (anon).

Quite simply, my experience with cancer has made me a better, more complete person (but unfortunately, no less complicated). I have greater empathy with others, I have a better appreciation of what is important in life, of what is morally correct, I believe  I am more honest. Such a threat to one’s life also make you (well, made me) more inquisitive for the truth. Getting cancer at 20 (and again at 41) does raise major moral and spiritual questions, which I have spent many years researching and, eventually, coming to conclusions on. That search helped me deal with my  fear of cancer, of death, of the unknown, has made me stronger, more sure of myself and more at ease with my place in the Universe.  I think this deserves a dedicated post – probably the same one covering “magic”! For now, l’ll just say Reason, not Religion, is the way to Truth (and probably, World peace).

4. I improved my diet and lifestyle

So why did I get Non-Hodgkins Lymphoma? Why have I got bowel cancer? I dunno. I have not been given a clear reason, like… “it was  caused by driving a Datsun Sunny“, or “You wore your jeans too tight when you were a teenager”, or even  a more sensible suggestion, like: “you eat too many meat pies” (and I can say with some confidence that it has nothing to do with me being punished by God for the original sin of Adam and Eve – there are plenty of delusional fools pushing such nonsense – they don’t deserve a link here but you can easily find them online, if you so desire). So, with the lack of a clear answer, you just have to assume it is a combination of being genetically predisposed to it and living in a World full of industrial poisons, bad farming practice, and culturally misguided lifestyle.

So you address it. You start to look more closely at what you put into your body, what and how you eat and drink, how to get physically fitter and stay fitter. And you feel better for it! I hear some of you saying, “well, a lot of good these changes did you after your first cancer at 20 – you got bowel cancer at 41!”. Yep, I contemplate that little chestnut from time to time  and I have no way of knowing how things might have been if I had not made changes, or made different changes. I have no duplicate me to use as a control (although I have a  very similar brother, with similar lifestyle and diet who has never got cancer – he drove a Datsun Cherry though, that could be it). However, the changes were made and I did feel better for them, for years! As time passed, clear of Lymphoma, I did get gradually more complacent and some bad habits crept back in. Maybe if I had been more strict with myself, I’d be okay now, or maybe not. I am looking closely at diet and exercise again, though it’s tricky to implement changes right now, on chemotherapy, with no energy and wild cravings for cola and Pot Noodles. The training starts in October!

In the end, of course, there really isn’t anything good about cancer but I hope you now get the point of this post and its title. Despite cancer being hell,  you can’t let the persistent bastard win, physically or mentally. So, as hard as it might be at times, try and turn every negative thought into a positive, look for the good, through the bad and WIN!

All my love to my fellow fighters, their families and friends.

Tim

This battle is done; if only the war was over…

Blood (Like Honey): a new song, a new recording. I thought I’d get it out into the great wide open before I start hating it and pull it to bits. The first part (before the “Weird Sisters” middle eight) was actually written many years ago, in 1993. I recorded the rough idea back then on 4-track (Yamaha MT2X) but it was never completed. Now it is, via Logic Pro, for better or for worse!

As it now stands, the song represents my fight with cancer, and the seemingly never ending chemotherapy…

I’m coming home,
Prepare for your valiant soldier,
This battle is done,
If only the war was over.

The music too is an allegory for the ups, downs, and emotional chaos that come with cancer. “Pop”, this is not but then, I don’t write songs and music to be popular, I write because I need to and I write what I need to. In all honesty though, It’s always good when others like what you do.

Whether you enjoy the track or not, I hope  you’ll  get an idea of the feelings behind the song though I hope you’ll never have to confront them for real.

Keep healthy, keep happy.

Tim

“Build” (1995) – 2011 remix.

Well, here’s my first music post. This track, Build, is a brand new remix of the original, which I recorded on 4-track tape in Newcastle, 1995. Back then I used the drums off a Yamaha PortaSound keyboard as a guide, recorded bass, then cranked up my guitar amp and pissed off the neighbours. Really. The last track was  me reciting a poemwotIwrote –  and that was it: 4 straight tracks of noise.

I’ve always liked the sound of the original  but fancied sprucing it up and adding better drums. So, I used the Flex function in Logic Pro to fix the variable bpm (due to tape stretch more than a dodgy Yamaha drum beat), programmed new drums and added new sounds and layers, derived from samples of the original. I’m pretty happy with the end result. It retains the energy and noise of the original. I might be temped to do some more tweaking but then again, you know what tweaking leads to…

As a footnote, I should add that in 2001 I sampled the bass from the original Build recording to form the basis of the Hoochie Fig track Li’l Broken Brooch, which the Fig still play in live sets. 

Blog rename, rethink, re-emergence!

I originally started this blog in 2010 under the title My Heraclean Heal, intending it to be an account of my experiences fighting cancer – written, for the most part, as short stories. I beat Non-Hodgkins Lymphoma in my 20s and now, in my early 40s, I am fighting advanced bowel cancer. So it goes.

But after posting one short story, 45 Degrees (which was therapeutic at the time and well received), I posted nothing else. After that first post it felt like if I carried on writing about cancer, I’d never get any rest from the persistent bastard: it really does invade every part of your life, every day. If your not careful, it starts to define you.

Rather than ditching the blog altogether I’m just changing tack a little. It has a new name and is now going to be a place for any of my thoughts, prose, poetry, images and music on whatever subject. No doubt the persistent bastard will feature from time to time but I do so much more than live with and fight cancer.

Another reason for the change, is I wanted a place I could blog about and post the music I do that isn’t done as Hoochie Fig (with my brilliant music partner Keith Fig – see our blog). Some of it might one day become Hoochie Fig music but I don’t want to crowd the main Fig site with my personal experiments!

Well, the only certain thing in life is change, so here’s some more.

Good is easy, easy is good.

Tim.

Posted from the back garden, day 2 of a 3rd journey with chemotherapy (there it is again!)

Day 2 of cycle 1 of Chemo no. 3. Chillin' in the back garden.

45 Degrees

“What’s that face for?”
She is smiling, I think, maybe even laughing. But what “face” do I have? I can only barely make out hers, like it is beneath mildly turbulent water, a swimming pool perhaps, though her voice is clear. And sudden. Sudden, like nothing existed before it. I love her, so glad she is here, wherever here is. There are others too. I can hear talking, hard objects clanging against metal. More talking, from her. I’m speaking now, or am I? Gone…

White. Still.

“Nothing wrong with his kidneys that’s fae sure”.
Yes, others. Clearer now. Busy round me organising stuff, equipment. There’s beeping. Hospital. Yes of course, I remember now, all done then, all good. Operation over. Home soon. Gone…

White. Still. Pulse.

“Mr Riley?”, “Mr Riley? Hello there?”.
Who’s that? Black. Eyes won’t open.
“Hello there, my name is Dr Philips. Hello.” Ah, open. Big face. “You’re in the Intensive Therapy Unit Mr Riley. You’re doing well but you were in theatre for longer than expected, 5 hours. So we need to keep a closer eye on you for a while. Okay? This is Alison, she’s looking after you”,
“Hello Mr Riley”. She’s Alison. She’s pretty, lovely lips. Reaching up. Why? Drip. A drip, yes I have had my appendix out. Yes. Does that justify a drip?
“The surgeons will be along soon Mr Riley, to speak to you. You’ve had a rough old time but your doing fine”, says the Big Face. Rough time I’ve had. Yes, was in a lot of pain before but no pain now. Appendix out. Pain killers working. But so many wires; too many wires. Venflons in both hands. More in arms. Something in my neck too. And stuck up my nose – oxygen; surrounded by “machines that go ping”. And… I am at 45 degrees. Gone…

…I am at 45 degrees, just me, in a white shiny room, at 45 degrees. Suspended by umbilical appendages, feeding me, emptying me. I’m on display, the limelight shining down on my face. I can’t move. I can’t feel. I ca…

“Hello Timothy, How’re you doing then, hmm? Right. lets get him moved up the bed”. Another voice, I think this is the anaesthetist. Yes. She moves to one side of me and Alison, beautiful in white, is on the other. “We’re going to help you up the bed, Timothy”.  They are moving pillows and repositioning tubes and cables, “Right, get your arms to your side, push up and slide your bottom up. That’s it. Good. Strong arms. Excellent. There we are, Comfy?”. I mumble something and the oxygen tube fall out of my nose. The anaesthetist shoves it back in. “Okay, that’s better isn’t it? Right, you gave us a bit of a surprise there Timothy, we needed to keep you under for much longer than we expected, but you’re strong and you are doing very well. If you can lean forward for me I just want to listen to your lungs”. Yes, I keep getting told I am doing very well. What am I doing very well at? Why the fuck am I in here attached to all this stuff? “Big breath…”.  Ha, big breaths says the doc, ooooh, fankyou docta! says Babs Windsor. “…and out. And in again… and out. Good. A little bit of fluid on the right lung but that’s to be expected. You’re doing very well.” Apparently, yes, I do seem to be doing very well! “Now you might be aware of tubes in your neck…”, the oxygen tube falls out of my nose. The anaesthetist shoves it back in, “…with you being out for so long we had to put a CV line in, okay? Just makes it much handier to get the drugs in”. Yes, that sounds very handy. “Now we’ll top up your Morphine. There. Has your wife been in again yet, to see you?”
“Yeash, she ws innnn”. Gone…

…45 degrees and ever so slowly rotating. Perhaps I am being roasted, or baked. What’s the difference between roasting and baking? Is it the temperature of the oven or the type of food being cooked? Are meats roasted and cakes baked? Or is baking only baking until the oven reaches 200 degrees Celsius? Maybe I am being boasted, or worse… raked! Fig forbid such a fate! I guess, as I am rotating, I am more like a pig on a spit, or a Fig on a spit, so roasting it is. But then all the wires and catheters would twist around me as I spin, or are the machines in synchronous rotation? Of course they must be. And the heat is just an illusion, or the catheters and wires which support me would melt and that would cause a terrible mess. Perhaps I am not rotating but the sphere I am in is. What sphere? More voices echoing about the womb. Voices indeed. Urgent voices… and alarms.

“McDonald, Bay 2!”, someone is shouting. There’s some commotion for sure, people rushing towards the alarm sounding from behind a drawn curtain, which parts slightly to swallow those who approach. What are they building in there? (I’d enjoy some Tom Waits right now). I guess someone is on the way out. It’s not me: I am doing well, or so I’m told. The tube in my nose falls out. I leave it where it settles. It’s beginning to annoy me, as is the other tube I am now aware of, dangling out of my other nostril. I  think I have something up my dick too – need to piss into something I guess and it seems getting up isn’t an option. I try. No, getting up is not an option. I’m fucked. Why am I so fucked? The commotion in Bay 2 has faded. The curtain burps out a number of personnel, exchanging solemn but efficient conversation. I’m guessing ‘McDonald of Bay 2′ is dead. I’m not that fucked, which is nice. Oh boy, oh b… Gone.

I’m not rotating, at least, not physically. I am possibly part of the bed. My torso merges with the mattress, propped up at 45 degrees. Is that for my well being or because it looks better in the movies? They were not at 45 degrees in “Coma”, were they? And where are the cameras anyway? Quiet on set! Ping, clank, whizz, chatter, chatter, clank, ring ring. I am tryin’, to sleep! “Keeping an eye on the world going by my window, taking my time”. Tell ‘em to be quiet, Big Face.

“Sorry, Mr Riley, did I wake you?”. Big Face? Yes, Big Face. I don’t know, did you wake me? It’s difficult to separate the two states you know. He’s just shoved that bloody tube back up my nose and is fiddling about with various syringes and portals to my blood stream, administering drugs I assume. Alison, my angel, is also near by. Appears she is always near by, bless her. Looks like she is mixing cement. I wouldn’t rule it out, this is all pretty crazy. No, actually, it is wallpaper paste.
“Mr Riley”, says Alison, ” I am mixing up a food supplement, which we will connect up to one of your intravenous lines. With you having had major surgery on your bowel, you can’t eat for a while as we need to rest your bowel and allow it time to settle and heal. This mix contains all the nutrients you need”.
“Yes, that’s your bacon and eggs for now”, adds Big Face. He’s funny isn’t he? Ho fucking ho. Major surgery on my bowel? Has that been mentioned before? Maybe. It’s all pretty fuzzy. I don’t even have a clue how long I have been here. Time in this place doesn’t seam to exist. Major surgery on my bowel. What happened to the emergency appendectomy? Alison has connected and hung up my nutrient broth. A huge bag of white STUFF, jostling for position amidst several other, smaller bags of stuff, all leaking slowly into me.
There goes ‘McDonald of Bay 2′, being wheeled off to the morgue, I suppose, by two ice-cream men. At least it’ll be peaceful there. Or will it? Maybe it’s full of loud, brash morticians cracking “stiffy” jokes and sharpening meat cleavers, I don’t know. But here, it is constant babble, rings, beeps, activity; with no sun, or moon, or horizon.

As MacDonald exits, two new faces enter stage left. Stern looks. I see them some way off but then they are suddenly both in my face, talking to me. How did that happen? They are talking about my operation, complications, serious implications and suddenly my mind is at its most alert for sometime as I almost predict the words leaving the surgeon’s buccal cavity.
“…and behind the appendix, in the caecum, was a large growth. Now, we can’t be certain at this stage but it is possible that the growth is malignant, so…”,
“No, it’s almost certainly malignant…”, the more senior of the two interjects.
“Fuck”, I exhale desperately, almost inaudibly, my head flopping to one side as the ever vigilant Alison seams to lunge towards me from nowhere, offering comfort and speaking of “people I can talk to”, though my ears are still focussed on one man’s voice.
“… but we have sent the mass and some surrounding tissue, including a number of lymph nodes, off for analysis. But, I’m pretty certain its cancer Mr Riley, possibly quite advanced”.
“Fu…”, am I talking out loud or just in my head? “Fuck, fuck fuck fuck fuck fuck, oh my God, my God. Fuck. Oh fuck”. There seams to be more activity round me now as the surgeons appear to recess into the whiteness. “No no no no. No! No, please no…” Gone…

White. Still. But the shadow approaches. Silently it sits beside me. The stench and heat of its putrid breath making my head recoil into the pillow.
“Hello. Remember me?”, it mocks, with a ponderous, self-satisfied hiss. “It’s sooo good… to be back.”
Grey, getting darker… and darker. Stagnant.
And so lonely, in such vile and intimate company.

Awake. Same place. Same tubes. Same sounds. My wife, my mother, my father sit at the foot of my bed. Poor Dad. He has not one clue what to say, or do. He looks more shattered than I feel and it breaks my heart to see his face. And who is it sitting at my side? My head starts to turn to look but it is pushed back by such foul smelling air carrying a quiet, contented laugh.

My Heraclean Heel

In Greek mythology, Karkinos was a crab that came to the aid of the Lernaean Hydra as it battled Heracles. Karkinos bit Heracles in the foot, but was crushed beneath the hero’s heel. For its efforts, however, Hera placed the crab amongst the stars as the constellation Cancer. (Wikipedia, http://en.wikipedia.org/wiki/Karkinos)

This Blog is not about Greek Mythology; it is an account of my experiences fighting cancer – written, for the most part, as short stories. I beat Non-Hodgkins Lymphoma in my 20s and now, in my early 40s, I hope I am winning the fight against advanced bowel cancer. So the Greek myth of Heracles crushing Karkinos (or Cancer, the crab) is a powerful symbol for me. The blog starts retrospectively, where my most recent cancer story starts: in the Intensive Therapy Unit of Scottish Borders General Hospital in 2008 (See 45 Degrees). Quite how it will develop from here, I don’t know; but I hope that writing about my experience helps me come to terms with it and to forge a brighter future. I hope too, that my stories might help others going through similar major and chronic illness. Hearing from others who have been where you are is a comfort, for a life with cancer can be so lonely, yet in such vile and intimate company.

Love, health and happiness to you all,

Tim.