1 down – 5 to go
18th May 2006
tuesday 16th
I decided about 15 years or so ago that I would not offer unsolicited advice. This resolution came after listening to an American management guru (can’t recall his name – but he used to be a big cheese in the Xerox Corp) – tell a group of UK managers “whoever said it is better to give than to receive, was not talking about advice”. That pearl of wisdom has stayed with me ever since and I’ve tried hard not to go back on it. Until today. As the chemo regime gets underway I feel bound to pass one nugget on – asked for or not.
I could of course say that someone had asked for advice – it’s an old trick that musicians use when they run out of songs at a gig. They just start from the beginning again, saying that some members of the audience arrived late and have requested these songs. It usually works. I should add that Fat Freddy’s Cat never resort to this sort of deception.
As I sit in the comfy chair at the Oncology Centre in Northampton, a nurse struggles to remove a dressing that encases my left forearm. It’s quite a tricky job because the hairs on my arm are pulling and distending the skin around where the line goes in. There’s been a small amount of bleeding overnight around the entry point that needs cleaning away to prevent infection. Having removed the dressing the nurse then tries to shave my arm without disturbing the line. “We really should have done this before we started”. If I had a £ for every time I’ve heard this, I’d be able to afford the hospital car park fees.
So this is it; if you’re contemplating any surgical procedure, no matter how minor (or major) have a good shave first. In fact go the whole hog and have a full body wax. We all know that pulling plasters off hairy bodies hurts – and we also know that women do this on a regular basis and that they’re much braver than men. But that’s beside the point. It’s not just about the fact that it hurts. Hairs also prevent things sticking properly to the skin. When I had the ‘abnormal heart arrhythmia’ episode, I needed an ECG. This had to be done twice – the sensors wouldn’t stick to my chest until after it had been shaved. And changing the dressings (daily) on my stomach wound was particularly painful as it had not healed and all the tugging and pulling only seemed to make it worse. In each case the nurse involved would stop and go off and look for a razor before continuing. Even the bag sometimes leaks because the hairs around the stoma prevent it sticking properly and on my routine visits to the bag-lady she ends up playing the role of barber. So there you have it. It’s better done before, than during. Of course, if you’re challenged in the body hair department then I guess it’s less of a problem. But I digress.
Getting to Northampton was quite a challenge in itself. The Centre advised against me driving myself for the first session as my reaction to the drugs would be unknown. The whole procedure takes about 3 hours or so and I didn’t want Annie sitting there twiddling her thumbs when she could be attempting to lever quadratic equations into young minds intent on resisting such overtures. I’ll be finished by the time school ends and she’ll be able to collect me. So her eldest, Chris, takes me in his brand new Audi A4 Good grief are we there already? Quattro. It’s a nice car finished in a sinister shade of black, but as the fields and villages of Northamptonshire fly by, I begin to wonder what effect the G-forces might have on the stoma bag – and in particular what the bag might do to the new leather upholstery. In the event, nothing - we arrive 20’ early – bag intact.
I while away the time in the waiting room playing ‘spot the patient’. Most of the others are in couples and they’re all older than me. It’s hard to tell who is getting the chemo and who is the supporter. A lonely headscarf provides a possible clue. A gentleman sitting near me gets up and goes to the loo and his wife leans across and asks if I’m here for the chemo. I reply in the affirmative and she volunteers that her husband has completed his treatment and is waiting to find out the next stage (so an easy one to spot there – no points awarded). When he returns I find out he also has bowel cancer with 4 tumours on his liver and will need around ¾ of the liver removed. I am still amazed when I hear these stories. The liver is clearly a remarkable organ, to grow back after such an assault. I resolve to treat mine with much more respect in future and drink only at weekends. Apart from my medicinal Guinness that is.
There are three other patients in the chemotherapy treatment room by the time I’m called in. One is asleep but the other two start chatting. I’m told that the side effects really kick in around session 4. They mean well but as I listen I discover we all have different cancers and hence are on different drugs, so the effects may not be universal. I hope not as I have a charity bike planned just after session 5.
The first drug takes 2 hours to administer and I tuck in to my lunch. I was advised to bring food and drink – this has much the same effect as eating on a long haul flight, but also militates against any side effects, particularly nausea. My mind begins to wander and I try to think of a collective noun for chemo patients. I give up at my first attempt – chemo-holics and doze off.
I ate very little before I set off for Northampton, which, given I was to be there for 3 hours, turned out to be a good move as it meant the bag would not require emptying while I was there. Although it is possible to go to the loo while connected up to the drip (it’s on wheels) the lead is not long enough to allow for the full dexterity needed for bag-work.
The second drug takes just 15’ and then the line is flushed with a saline solution. I feel OK so far apart from a general tiredness. Annie arrives as I’m being connected up to my pump. It’s battery operated, and about the size of a baby’s feeding bottle. I’m given a pouch to hang round my neck and a supply of drugs to take home to combat the effects of chemo; steroids, a strong anti-nausea drug, some mild anti-nausea drugs and boxes of Imodium. It seems that the chemo and the steroids loosen everything up and the anti-nausea and Imodium slow everything down. It all seems a bit excessive – a ‘belt and braces’ approach. But I may yet have cause to be grateful.
By the time we get home the bag needs emptying and the shortcomings of the pouch become apparent. Without going into too much detail, it simply gets in the way. I find an old bum-bag (fanny-pack to my American friends) and this provides a better solution. A shoulder holster of the type beloved by American cops would be ideal – and look rather cool.
As evening comes I start to feel extremely tired. Wearing the pump in bed proves awkward, the line is too short (or I’m too tall), to fit under the pillow as suggested and I end up sleeping on my back with it next to me. I drop off to my usual night-time incantation “please don’t let the bag leak, please don’t let the bag leak”. I say it with more feeling this time – if it does leak I’ll need at least 4 hands this time instead of the 3 ideally required to change the bag.
wednesday 17th
I wake early feeling a little nauseous. A slice of toast and a pill should do the trick. I get some bread from the freezer to make toast and experience the tingling fingers from the cold bread. This is weird. Could have been scary had I not known to expect it.
Later on I decide to conduct a scientific experiment – to see if eating ice cream brings on laryngeal spasm (you can tell I’m bored). I wear gloves this time as I get a tub of Ben&Jerry’s Fish Food from the freezer. Interestingly (and thankfully) no ill effects – but the taste is completely different – bitter and unpleasant in fact. In the interests of medical research I decide to make a comparison with vanilla ice cream. This tastes normal. So it’s chocolate flavoured ice cream that’s affected by the chemo drugs. Hmm.
thursday 18th
No obvious feeling of nausea on waking this morning. Decide to change bag first thing. Lucky I did so as it was close to leaking. This happened yesterday at about the same time.
As I type this mid-morning I get a major leak. I’m just sitting here at the computer – no undue movement to disturb the bag. It’s bad enough to require a dip in the bath afterwards to clean myself up. This is really hard – I have to sling the pump round my neck, while keeping a bit of kitchen roll over the stoma to contain it, as I ferret around in my bag looking for wipes, new stoma bag and so on. I hate to think how someone less agile than me would cope with all this. Still, it keeps my mind off cancer.
Lunchtime - and it goes again – this is a record. It’s really getting me down now. It’s not just the mess; it’s all the fiddling around trying to cope one-handed. I call T- (the bag-lady) for advice. She asks me to come in to MK hospital straightaway. (How’s that for service?) I’m her only patient with this problem at present – which should be a comfort to others with an ileostomy. She’s concerned that I’m not going to get through chemo at this rate. She brings out the heavy guns – a super-bag held in place by both adhesive and a belt. The belt is uncomfortable but I agree to give it a go – at least while I’m on chemo. Leaks are far, far worse. I guess I’ll have to try Imodium as well or give up coffee and fruit for the duration.
The pump comes off late afternoon. I feel an immense sense of relief and freedom.
By late evening I have a chance to reflect on the past two days. Overall I feel OK. I have to get the bag sorted out though – the drugs are clearly messing with the digestive system. The pump is a nuisance – I can’t shower with it attached and sleeping, and dealing with the bag, is awkward. But it does mean I don’t have to spend two nights in hospital, which is a fair trade. I guess I’ll get used to it. That’s the first session over – only 5 more to go.
