Saying No

Are you one of those people who can never say “no”?

I am.

Why is it so difficult to:

• Turn down a good invitation when you are on your knees with tiredness
• Politely decline to help another on those occasions when you are struggling to help yourself
• Refuse an “urgent” meeting request when only 8 minutes of unallocated diary time remains in a 10 hour day

...You get the idea.

In many ways those of us that struggle with no cause as much disruption to the natural flow of daily life as those who suffer with the polar opposite character trait: those that can’t do yes! (inflexibility, a natural tendency not to help or engage with others, inability to see things from another's perspective).

Are you often overly busy? late? frequently exhausted? terrified of being at a loose end? unable to experience the beauty of solitude or mediative moments...? You could be a neverno. I have met a number of cancer patients who suffer from the same neverno affliction and I have spoken with alternative medicine practitioners who firmly belief this to be a common trait amongst cancer patients (I should say, that not surprisingly, practitioners of Western medicine, hold no truck with those that take this line!)

You can fix yourself! ... and it’s very liberating. I increasingly spot myself making more sensible decisions and occasionally saying no. For me it is surprising that, rather than feeling bad or having a negative effect on a situation, it frequently helps. 

Here's a simple example:

I had an invitation to visit some good friends who never fail to put a smile on my face on New Years Eve. They had recently moved house and I hadn’t seen them since our last family ‘holiday’, a long weekend at Womad just before surgery, I found myself sorely tempted with the tantalising possibility of celebrating New Year in some small way. Despite feeling tired and sick, faced with a one hour drive each way and needing to re-arrange a visit from a highly supportive neighbour, let alone our family plan to make a first visit in 5 months to my outlaws on the following day --  I still found it incredibly difficult to say no. I even put off making the decision to the last possible moment. Sarah said there was no way I could fit all this in which made me even more determined to demonstrate that I could (men are from mars...). After much consideration, I saw the light and remembered that I am supposed to be taking life easy, giving my body the best possible chance to rid itself of cancer and quickly came to a sensible decision. This may sound obvious, but it wasn’t to me. Yet having made the right decision, I felt a load had been lifted and I suddenly found some space to rest, recharge and spend time with the kids....

Bagman's Christmas Message (chemo cycle 7)

I thought I'd get in before the Queen!

Thanks to all of you who sent cards - I think we have received more and sent less than ever before. Just one of those things that has fallen a bit too low down on the priority list. I hope you will all understand. I did persuade Ben to draw a pic for a 'custom card' - see above - but it never got any further than the scanner. We did manage to get about 15 bought cards out, mostly to friends and family who are unaware of my condition - of course they have all been pointed here -- welcome along! Also thanks to those of you who have texted, phoned, sent emails or attempted a visit - I will respond to all after things have quietened down a bit and I have recovered my energy from the current cycle...

The Buckley Christmas has been split up a bit this year to work around my treatment. My mum came over on the 23rd December and we had a full-on turkey dinner mid afternoon. Yesterday, I went to the hospital for my 7th chemotherapy cycle. A bit of a challenge to get there - I couldn't get either car out of our lane due to thick ice after Monday night's rain froze solid. I quickly abandoned that plan and sheepishly slithered along the untreated Westwood roads in a vane attempt to catch the bus from the other side of the village and came very close -- I saw it drive past the stop from the middle of the park. Eventually, I managed to get a taxi and got to the Bath clinic which went quicker than ever because I was 1 of only 2 patients. I'm still infusing 5FU now with my portable pump which will be disconnected at lunchtime on Boxing Day. The last cycle was the toughest so far, but I put this down to having picked up a cold from Ben and probably attempting to do a little too much. I attended a couple of 1/2 day meetings at work - 1 each week and, although I enjoyed getting a little more involved in the business, I did find it thoroughly exhausting. Yesterday's blood tests showed that my neutrophils (most common white cells - an indication of immune system fitness) were at an all-time low of 1.5 and considered borderline for chemotherapy to proceed. I will certainly be resting more in the early stages of this cycle to try and recover this, since I am very keen not to prolong the treatment beyond March.

Mrs. Christmas visited Hope Cottage this morning and, since we had inkling this might be the case, the usual tipple of scotch was substituted for wine - Rudolf was not on his usual form either: he only managed a couple of sticks of celery and half a piece of Christmas pud. The kids are now growing up (9 and 11) but have quickly learned that believers are receivers which makes for most interesting conversations, where it is clear that in this game, they are now calling the shots. Fortunately, they also now understand that 4am is too early to start ripping into the sack, so despite excited, tired eyes much earlier I am sure, they managed to restrain themselves under their covers and Granny wasn't disturbed  until 7am by excited whoops and squeals.

They have now all popped out for a walk in the sun with some neighbours, leaving me some very welcome solitude and blog time.

Well that's enough of us. Let me just leave you with a few thoughts which, I am sure have changed within me over the past year...

• Enjoy time-out during the Christmas break, forget about work and enjoy some time with those you hold dearest - friends and family alike.
• Communicate, be brave, wear your feelings on your sleeve and don't be afraid to share your highs and lows with close friends. Embrace strangers with smiles and a few friendly words and see if you can win back a smile of friendly exchange - it doesn't always work but (huh?), but more often than not a checkout queue or walk in the park is greatly enhanced (smile). We have been incredibly affected by heart-felt fond messages from family and friends, many of whom have expressed love and concern in a way they have never done before. Is it necessary to endure suffering, before we are able to do this?
• Prioritise the wonders of the world above the tinsel. A walk in the wonderful snowy, sun-kissed crispness is a rare treat at this time of year, yet it is amazingly uplifting and certainly beats the TV, GameBoy, or computer (I can't believe I just wrote that, busily tapping away on the mactop while the kids are out walking with Sarah and mum!). I heard a great line at the bus stop yesterday: 2 ladies waiting to catch the free bus to what must have been the busiest day for Tesco "We all love a white Christmas -- but not like this!", made me wonder what a white Christmas would look like without snow and ice!

Enough! Enough! Enough - festive frolics to one and all and, again, thanks for helping to make it so bearable for the sick boy.

Baglife (part 3)

Having read this far, I'm sure that most of you will be thinking what a wonderous thing it would be to dedicate one's gluteus maximus to the sole purpose of sitting and it is true, there could be some benefits to having an ileostomy - let's see:

• Learn a whole new vocabulary of words (even another use for flange -- my favourite); 
• Free prescriptions (but you have to have cancer as well)
• You get to gross the kids out
• Overcome the irrational male fear of manbags. You need to carry a load of additional clobber wherever you go as an ostomist and hence, not carrying some sort of kit bag is not an option. In addition to all the stuff I'd rather not carry, mine also contains: moleskine journal, favourite ink pen, macbook, iPod, phone, keys - more than enough to make your jacket pockets permanently saggy. Why shouldn't men have handbags too? Not-convinced? maybe I am just gay!
• Lose weight. You can eat pretty much anything you want without putting on weight, I am now a little under 10 stone and I have previously (pre half marathon training) pushed 12 over the past couple of years. That bypassed large bowel is a pretty efficient beastie. I eat crisps like they're made of dried cucumber, cake -- so much cake, biscuits, chocolate to gay abandon, pasties, pies, more crisps. It just doesn't matter. It's like being a 19 year old, high metabolic-rated teenager again. (I probably ought to get them to include a cholesterol count in one of my regular blood tests - that'll be the end of pies).
• Little red card to carry with you which says in capitals "This person has a medical emergency which requires immediate access to toilet facilities", followed by an 0800 number. Honestly! Oh the power! Don't know quite when I'll need it - maybe if my mouth heals up and I lose the power of speech! Maybe when you go to one of those petrol stations having driven for 2 hours with your legs crossed and they say, "Sorry it's for staff only".... I just get out my little red card and I become one of the privileged access-all-areas few. I often wonder what they say on the end of the 0800 number, "...you better had because otherwise he's going to make one hell of a mess in your shop".
• ... mmm now I'm really struggling - can't think of any more ileostomy pros, but that's a fairly compelling list isn't it?... isn't it?

Before you rush out and demand that your doctor install an ileostomy before Christmas so that you can eat without fear of putting on an ounce (or was it the little red card that's tempting you), I have to tell you there are one or two cons as well:

• Smelly! Remember nappies? That's the smell, except adult strength. I carry an air freshener and frankly, you would have to have a fairly low regard for the next user of the loo not to use it. On the plus side, this is only a problem when you're evacuating. Each bag contains a mini-gas release valve fitted with a small charcoal filter to hide the occasional tummy burp. All vegetarians and beer drinkers should have one fitted to their trousers - should be mandatory for tube travel and lifts.
• Broken sleep. Still looking for that first, elusive sleep through the night. Always wake up to drain the bag, usually around 4am, usually struggle to get back to sleep. Draining is a fairly involved activity and certainly brings you back to full consciousness. No amount of stealth seems to work for me, I almost always wake Sarah. Not good, the fairer sex do seem to need their beauty sleep in my experience to avoid the beast taking over. You may remember me drawing some parallels with becoming a new parent is my earlier post - New baby!
• Showering and bathing is a pain. It just takes longer to get through the bathroom, trying to keep your tummy area relatively un-drenched. Alternatively, you can bathe with stoma exposed, but that's a completely different kettle of fish to 'a nice relaxing soak in the bath'...
• Imagine you have absolutely no control over your movements. No clenching; no "I'll just hang on a bit" - just regular peristaltic alimentary canal activity. If you're alive, you're progressing your food through your gut. This means that, every few days when it's necessary to camp out in the bathroom for a good hour to change the whole shebang, you have to get your timing right to coincide with times of minimal activity. Not too close to a meal - that stimulates activity, not too far away - 4-6 hours later and it's on the way out again.
• And here's the biggie... accidents! I'm not a recluse, but I can see how having an ileostomy could quickly turn you into one. There is an almost constant fear of leakage and the inevitable consequence of severely embarrassing yourself in public. I have had a couple of unmitigated disasters and so many near misses. Aside from the inconvenience of having to pull off a complete clean up and change of clothes (from the back of the car; in the disabled loos at the cinema; in the completely inadequate public toilet), it's painful too. The large bowel plays an important role in removing stomach acids and enzymes and these cause havoc with the skin around the stoma. Following major abdominal surgery, it's common to lose a lot of feeling (temporarily??) on the skin of the abdomen as many nerve endings are severed during surgery, and my belly is largely numb. This means that I am not usually aware of a leak before it's fairly well advanced and hence the consequences in terms of soreness and soiling your clothes are that much worse.

I've tried all sorts of things to reduce the incidence of leakage including stoma collars, 2-part bags, hydrocolloid plasters, cohesive slims and powders - all to no avail. I'm fairly convinced that the main problem is that during the first week of the chemotherapy cycle I suffer with an upset tummy which results in more corrosive and thinner digestive tract contents, which in turn breaks down the glue used to stick the flange to my stomach. Of all the things I have had to come to terms with, I think this has to be the most significant because it is demoralising and robs you of your liberty.

It also causes quite a lot of additional washing, which has helped me fix the washing machine whine from which I have suffered since I got married. This whine is not actually made by the machine itself, but the person who usually loads it. Now that I do a significant portion of the loading myself, the whine seems to have stopped. You can't do the washing, so there is little point in complaining about never being able to complete it. You have to get in the washing, splash about for a while and get out again - the  Forth Road bridge still needs painting. If you get to that point of thinking the washing is done then you and your entire family have either become naturist or died. Accepting that the washing can never be completed is preferable to either of these two alternatives. Accidents also seems to improve the ironing hum and the cleaning whirr (I often whizz the hoover around before receiving visitors!).

Less often, but still significantly I suffer leakage during my second week when I am much more likely to be out and about -- ever fancied spending an hour in the disabled loo at the Odeon? Do you know how loud they play the piped music? On this occasion, Henry's birthday, I missed the last 2/3rds of "Up" (in 3D) but I don't feel that my life is any less enriched as a result. It's high time film studios stopped trying to pass off CGI cartoons as feature films. I'll accept the first iterations of Toy Story and Shrek - good story lines, humorous, wide audience appeal, but now... even the kids are getting bored. Steve Jobs - I owe you a debt of gratitude for saving us from crap quality, nasty looking, unreliable and difficult to use computers and consumer electronics both with Apple's own products and the competitive pressure they exert on the others, but the day you sold Pixar to Disney, you sold your sole to the devil.

Chemotherapy session 6 -- half way point

6 / 12
Something of a milestone... or will be when I get through it.

I seemed to have picked up a cold from Ben, so am Mr. Sniffly, but my blood tests show that my immune system is good enough to cope with a full strength dose of chemo. I feel a little tired and am writing from bed to give myself the best chance of kicking it into touch before the immune system reaches it's inevitable low point. I'll be up and about this afternoon, since as the side effects build over the next few days, I expect the tiredness to force me back here.

I had a meeting with the oncologist on Wednesday and all seems to be going according to plan. We talked about the results of some additional liver blood tests taken two weeks ago which have shown up nothing untoward. My regular liver function tests are still outside of normal range but getting no worse. No further investigations will be taken until after chemotherapy completes. In the meantime I will continue my abstinence from alcohol.

I asked about the next steps after chemo and learned that there will be follow-up scans one year after surgery (August). This will be repeated every year until 3rd year at which point I would be considered clear of cancer. I questioned about my longer term prospects, but it became quickly evident that they really don't know. Virtually no statistics have been collected for my age group and the best I could extract was "the odds are in your favour". On the plus side this allows me to continue with my positive attitude, safe in my own knowledge that everything will work out ok. Sceptics might call this blind faith, but I somehow feel this deeply inside and am convinced on the benefits of positive thought, both within me and also within my network of supporters - for which I think you all.

Baglife (part 2) - A picture casts a thousand t**ds

My ileostomy is temporary -- the surgeon told me so! That phrase should be filed alongside "Just a gentle prick" when the nurse goes intramuscular with that 4" needle.

Just how temporary is temporary? In my case: abdominal surgery to remove my tumour; histology on the tumour and the surrounding jiggly bits; followed by a clean bill of health and then a reversal operation, say 5-7 weeks? That was the plan, but plans don't always work out. Now I am in the middle of aggressive, relatively long term chemotherapy. Delaying the start of urgent treatment seemed unwise at best and potentially risky at worse given that there was already evidence of the cancer spreading to the lymph nodes around the colon, and that the cancer was poorly differentiated (a high grade cancer). An early reversal would have meant delaying the start of chemotherapy by many weeks to allow the operation site to heal since chemotherapy severely impairs the healing process and the body's ability to counter infection.

So I get the keep my tum-bum for an extra 6 months+ (whoopee do!) and I'm hoping to get my arse reinstated as a late birthday present.

If I had known that I would be having a bag for 9 months, I might have given this a little more thought  before surgery. A quick look at my August post: The Day of Reckoning will remind you just how stressful I found the pre-op admission and time leading up to the surgery. What I failed to mention then was that in addition to visits from anaesthetist, consultant and nurse for "bowel prep" and pre-med, I also had a visit from my stoma nurse armed with a black permanent felt pen to mark my abdomen to guide the surgeon. I was completely unprepared for this - imagine going for a boob job with no interest in the result: I had no enthusiasm for stoma surgery; didn't realise that location could be important (I'd never seen or spoke to anyone wearing a bag before); and had bigger fish to fry (the colon resection being a case in point). Consequently, I had given this no previous thought and so was at a loss to answer the stoma nurse's questions with anything other than bewildered, ill-considered, monosyllabic 'yes' and 'no' answers. In retrospect, it would be difficult to do anything else without having considered how a stoma might work, what a bag is, where it might hang and that it might hang around longer than desired. I wish I had!

I ended up with stoma positions marked on both sides of my abdomen (a 2nd option for the surgeon if the preferred right-side didn't work out). Both marks seemed a little high, but wearing a waistline-agnostic surgery gown, I did not realise the consequence of this at the time and questioned no further. It transpires that the natural position for the waistline of my boxers coincides exactly with stoma. I tried wearing my boxers as low as possible, but builders bum just doesn't really work with boxers. I've lost quite a bit of weight since surgery and none of my trousers fit without substantial hauling in on the belt buckle.  Have you noticed how popular hipsters and other trousers with low waistlines are these days? I made this conclusion after finding not one pair in the wardrobe where the belt didn't cut into the stoma. I've retrieved a couple of pairs of chinos from the "slimline Phil archive", a little frayed around the edges but with high waistlines. They are both Racing Green, bought around the time of their mail order launch about 10 years ago. My wife would contend that I am a hoarder and clutter up my life with stuff I no longer need, I would weakly contend that you never know when they might come in useful -- vindicated!! I'm just amazed that they have survived Sarah's secret clear-outs when I am at work. I've bought new trousers (32" high waistlines) and a load of mini briefs which I can wear below the base plate which connects to the infamous bag. Never have I owned such brief, briefs before, but I won't claim they are sexy on account of them being mostly obscured by a bag of sh1t. Ideal clothing would be Ecky Thump style huge trousers, braces and a nappy.

You maybe wondering where is all this leading? Many weeks in the dressing room, experimentation with a whole range of samples from the stoma supplies company and long discussions with stoma nurse have reduced but not resolved the problem of 'accidents'. This causes more anxiety than you might imagine and certainly reduces my desire to get out and about -- there's a certain confidence afforded by being within running distance of ones own bathroom.

More on accidents in part 3.

Chemotherapy session 5

Lots of you have asked how I am doing (thanks).

I'm now in the middle of chemotherapy cycle 5 and, quite frankly, feeling pretty rough. The mind is willing, but the body feels well knackered. I've felt extremely tired since Monday and have spent most of the week resting in bed on and off. I drove into hospital today to have my central line flushed - which felt like a Herculean effort. The sister gave me a good check over and is satisfied that I am not coming down with anything. Increasing tiredness is very common as chemo progresses - I just need to take it easy to make sure I don't catch anything when my immune system is weak.

Looking forward to picking up a bit as the weekend approaches.

Bag life (part 1)

I was first diagnosed with cancer on 29th July. Sarah came with me for the consultation, which is indelibly fixed in my mind as I recall now the look of devastation on Sarah's face as the consultant said: "I'll come straight to the point, the biopsies tested positive for cancer". Somewhere, deep inside, I already knew this and so, for me, I received this as a confirmation rather than breaking news which had the effect of lessening the impact.

That might sound a bit glib, but I had been preparing myself for some time and it seemed like a logical conclusion from the evidence in front of me. First off, my father had colon cancer and indeed eventually died of cancer at 62. Second, for the past month or so I had occasionally noticed a little dark red in my numéro deux which could have been blood coloured. I desperately wanted to ignore this, but after a watching the haemorrhoids video at nhs.co.uk I knew I couldn't pass this off as category 1 bum plums and get away with a tube of Preparation H from the chemist. Thirdly, I had plucked up the courage to see the quack. He made a digital examination and thought he could feel something which 'would be wise to get checked out'. I know my GP and I think his calm, reassuring tone may have been betrayed by the concerned look on his face. I was referred to a consultant who, after a little more of the rubber glove treatment, confirmed that I had a rectal polyp, which he hoped would be benign. This was quickly followed by an MRI scan, a colonoscopy and then finally CT scan. This rapid chain of escalating diagnostic activities over a matter of weeks was never likely to result in good news.

Back at that consulting room at the Bath Clinic with Sarah clutching my hand, still in a state of shock  while I, already resigned to the diagnosis, was eager(!) to discuss treatment options. It occurs to me now that there was definitely an element of John Gray's Martians and Venusians at play here, even in this dire situation: my instinct to protect and suppress (Let's not waste time discussing this, we know the problem - let's get on and fix it) conflicting with Sarah's need to address her strong emotions.

The consultant explained that the first step was to remove the polyp and, since it was well embedded, also a section of colon and the surrounding tissues (lymph nodes) to establish if the cancer had spread beyond the colon. He then revealed the scale of the operation and explained that it would be necessary to perform an ileostomy to allow my colon to fully recover before the ileostomy is reversed..... I'd never heard of an ileostomy before, but the -stomy bit at the end didn't half sound like a bag would be involved.... "Does this mean I have to have a bag?", I enquire nervously and this is the point where I start to lose my composure. Cancer I can cope with, but the thought of wearing a bag (even temporarily)??, please noooOOOOooo!!

And with that, The Bagman was born. I'm still learning to live with my 'appliance' and have discovered a whole new vocabulary including stoma, collar, output, flange, hydro-colloid and ostomist (one who has had surgery to create a stoma connecting a body cavity to the outside). I can now recognise new company names that distribute their wares strictly under plain, brown cover. To say there is something of a stigma associated with wearing a bag is something of an understatement, hence the Ostomist's world is a secretive one which rarely gets an airing at dinner parties. In fact, for reason's which I will reveal later, a dinner party is a scary place for a Bagman.

Coupled with cancer treatment, wearing a bag is a right pain in the ... (sorry!) and has been a major cause of embarrassment, discomfort, misery, frustration and fashion faux pas for me. Part of the problem is that the majority of the information available is provided by a) stoma nurses who have no personal experience of bag life and b) utterly useless web forums - the plain, brown cover companies provide almost no information.

Whilst the popular press may be happy to report on the highs and lows of celebrity colon cancer cases, rarely does the A-lister mention that he struggled with an ileostomy for 6 months as is the case with the vast majority of colon surgery patients. There will be no such holding back on this blog - more in part two on how to guide the surgeon where to put the knife.