Dark Laughter

There's a lot about cancer that's terrifying. You can give yourself all the positive talking-tos and try all the diets and alternative therapies you like, but if you're me, anyway, there'll still be at least a few minutes every day when you think about your death.

You wonder if you've made sufficient preparations for it, particularly financially so your loved ones don't have to sell the family silver to see you off. You wonder if you've made your funeral wishes clear enough, and if they're achievable.

You think about your past too. All your mistakes. The way you misunderstood and misjudged so much. All the people that you've hurt. You wonder if there's time to say sorry. And you feel an aching nostalgia for old places, old scenes, your childhood -- everywhere you know you will never go again. Or might never go again.

That's the kind of emotional world you live in (it occurs to me it's not dissimilar to the torment of a severe mid-life crisis). And for me, humour acts as a balance to all of that. I deflect the impact on me of dread and sadness by what Sherwood Anderson called, in a different context, dark laughter.

Some thought it distasteful or unsettling when I called the cancer in my bowel my 'meatball'. Or when I joke about having had a multitude of fingers and cameras in my rectal passage during my treatment. But it's my way of making it easier for me to deal with, temporarily anyway; my way of taking back some of the power that the cancer, and what I've been through since I was diagnosed, both have to rob me of my peace of mind.

Please excuse me if I ever seem like a flippant, insensitive so-and-so.

Bruce Hodder

Poem: Written Before Surgery to Take My Cancer Out

Before my bowel operation I convinced myself I was going to die on the operating table. It was having to sign that form acknowledging death as one of the risks of surgery. I wrote this poem about some important people just in case.

Written Before Surgery to Take My Cancer Out

If the operation doesn't work 

and I die under the surgeon's knife,

let my lost loves and my old friends know.

I would want to hear the same of them.

When they cut my body open,

if I die remember me to Helen.

I loved her as a teenager,

but I didn't have the nerve to say.

Remember me to Shirley too.

I knew her in my twenties.

She held my hands to warm hers once

in the Wimpy Bar in Wellingborough.

Remember me to Katie R.

The toy cat that she gave me

for my birthday many years ago

is still there on my bookcase

by the Green Man and a music box.

And don't forget to tell Martyna,

my companion through my uni years.

She let me feel her daughter move

inside her pregnant belly.

Remember me to everyone

because each and every one was precious,

and tell them all my ashes

will be scattered on the River Nene.

Bruce Hodder, late May 2022.

When Things Go Wrong with the NHS

I keep hearing these horror stories about people spending inordinate amounts of time in A & E because there are no beds available on the wards. Their experiences remind me of something I went through, and the dilemma those of us who strongly support the NHS find ourselves in when things go wrong. Should we be too vocal in our complaints when we know the enormous pressure the service is under? Isn't that why mistakes are made? And with the underlying ideological antipathy to the NHS that still exists on the Right, are we playing straight into the hands of those who would privatise the service at the drop of a hat if we make its shortcomings too obvious?

I don't remember exactly when it was; so much has happened to me this year, I get the chronology of some events mixed up. But there was a time when I spent twelve hours lying on a trolley in A & E because they didn't have a bed for me. The cancer in my bowel hadn't been sorted out; I hadn't had my stoma created. So I was particularly prone, without being overly graphic, to sudden and bloody discharge from my backside. And that's exactly what happened because I was put behind a screen and couldn't get the attention of any of the nurses moving rapidly back and forth along the corridor. The screen was there for my benefit, undoubtedly, but it didn't work out that way. I had to suffer the embarrassment of a nurse probably 35 years younger than me cleaning my bum because I couldn't get to the toilet.

That wasn't all. After twelve hours they found a bed for me, and when the porter wheeled me there an extremely irritated nurse said they'd been waiting for me for ten of the twelve hours I'd been lying in the corridor.

'I'm so sorry,' he said, 'you shouldn't have had to go through that.'

When I was well enough I thought about making a complaint but I didn't do it. I considered making a complaint about the junior doctor who told me I was terminal before all the treatment options had been explored, and I didn't do that either. On both occasions it was for the reasons outlined above. But when I think about it now, and when I think about some of the media stories and the experiences of family members and friends in hospital, I kind of wish I had made a complaint now, or at least I wish I'd been more public about what happened to me.

We have no control over the ideologues who want to privatise the NHS, and presently, at least, it seems there is still broad support for the service in the country, although the approval rating amongst the public is said to have slipped post-Covid. And my suggestion that mistakes happen because staff are under intolerable pressure is unarguable, as far as I'm concerned. I don't want to throw anybody to the wolves. But I don't want vulnerable patients to face double-figure A & E waits or misdiagnosis or discharge to the wrong home address either; and if we never talk about how the NHS is failing, either on a patient level or a structural level, how is it ever going to improve?

Bruce Hodder

Today is a Win

I had some good news today. The District Nurse told me that I no longer needed one of my five post-operation wound dressings. And sure enough, when I mustered up all the bravery I have in my timid heart and looked at it, the wound has gone. Somehow, miraculously, there is skin again.

That wasn't the only thing to come out of her visit. By the time she left I felt cautiously buoyant.

I made the fifth wound in my abdomen myself, a week after I came out of hospital. There had been the inch-or-so-long snaky track of an incision coming up over the curve of my stomach from my belly button. In the hospital, where I languished longer than I should have done because of an error by a senior nurse on my ward, the scar was already starting to scab over and heal.

That's what I thought anyway. Back home, I split the scar open one night, presumably when I was turning over in bed, and made a hole in my belly 1.3cm deep. I have the precise number because after a few nurses just put a dressing over the hole, a more diligent, or perhaps just more experienced, nurse measured it.

She packed the hole so it would heal in the right way and dressed it. For about a month now other nurses have done the same. But today the nurse examined the area her colleagues had been packing and said there was no longer a hole. I didn't look too closely at that one because I could see out of the corner of my eye that my skin hasn't properly healed yet over what was once a black miniature Grand Canyon. I can wait. The important thing is that it no longer needs packing.

When you have cancer, or any chronic condition, you learn to appreciate the little victories. I had two drainage bags and two dressings stuck fast to me when I came out of hospital. Then I made a hole in myself and it became two drainage bags and three dressings. Now it's four dressings covering wounds that are all, according to the nurse, showing signs of recovery. And the hole in my body has gone.

As a wise friend once said to me, 'Today is a win.'

Bruce Hodder

If It Looks Like Cancer and Smells Like Cancer

How It All Went Down (Prelude)

It occurs to me that most people don't know yet how my diagnosis happened. 'Check your poo,' Deborah James said during her illustrious Bowel Babe campaign. As soon as you spot anything irregular, like blood in the toilet bowl, she reminded us, see your GP. But I didn't.

My poo (we might as well continue with Deborah's terminology) had been irregular for a long time. Sometimes I had diarrhoea, sometimes I don't think dynamite would have loosened me. Obviously that's not normal. And I knew it wasn't, but I convinced myself it was down to lifestyle - very little exercise, poor diet etc. When the irregularities persisted I began to think about illness, but I'm not sure I ever really entertained the idea of what was coming, unless it lurked somewhere in the back of my mind like the demons of the night do.

Not long after the last lockdown, Michelle and I went on a coach trip to Shrewsbury, where Mary Beard went to school. We had five hours in the town before the coach was scheduled to pick us up again, and in those five hours I went to the toilet five times, almost on the hour. Without being too graphic about it there were copious amounts of poo and blood involved every time.

I knew something was very wrong. Even then, though, I don't know that I would have done anything about it. Probably I just would have nursed my secret, getting more and more afraid every day, becoming weirder and weirder, shutting Michelle out until we reached some kind of crisis point. Why? I have no idea. I'd like to say it's a man thing but I knew a woman long ago who kept the lump in her breast from everyone until it was fatal.

Diagnosis

Soon after Shrewsbury my health deteriorated. I became incontinent. I lost my appetite almost completely. During the night I had wild hallucinations. I had no strength to stand up or to wash. I could barely even lift my tooth brush.

We went to A & E and they diagnosed malnutrition and a urine infection. I was given a course of antibiotics. But my symptoms only worsened. I believed I was in my dead friend's bedroom fifty years ago. I thought the toilet was a structure made of stones, and gangsters were conspiring with Marilyn Monroe, who wore the dress from 'Some Like It Hot', to steal my urine for some nefarious use.

I know. Crazy, right?

And when I got up off the toilet one night I fell straight away to the bathroom floor.

I don't know if it was that night or a day or two later, but a week or so after my discharge Michelle called the paramedics. They examined me and contacted my GP, demanding a same-day appointment.

'They may not prioritise it if you call,' explained the paramedic who talked to them 'but they will if it comes from us.'

The GP examined me more invasively than I have ever been examined before - a gloved finger in your anus is a surprising sensation even for someone who's too ill to feel embarrassed by it - and insisted we go straight to A & E. He also wrote a letter to them which we were supposed to transmit containing the details of his examination. I didn't understand most of the language, but the letter ended with two frightening words: 'Query Sepsis?'

I was admitted that day, after several hours in A & E, and on my first night as a patient, taken for a CT scan. The next morning, on his rounds, the doctor came to my bed and flanked by juniors, told me the scan had identified a large cancer in my bowel. It turned out on subsequent rounds that they weren't sure of that yet. I asked him what the chances were that it might be something else.

'Well, if it looks like cancer and smells like cancer, in my experience it probably is cancer,' he said.

It was an unbelievably flippant way of telling me I was screwed, but by that time my head was in such a surreal space I actually found it funny. Anyway, one of the junior doctors had already told me I was terminal. He was by himself that morning and appeared to be suffering a temporary delusion that he was a consultant. Speaking vastly beyond the limits of his knowledge and experience, he'd made me feel I would be lucky to see Christmas.

Bruce Hodder

What Gives You Grace

When I was first diagnosed I didn't read or write anything at all for four or five months. I didn't do much of anything except watch tv (when I wasn't in the hospital). I was depressed. I drifted through my days like a concussed man. I couldn't find my bearings.

Gradually, I learned to live with my new reality, and some enthusiasm for life, and the arts, came back. Now, along with Michelle, they are my saviour. 

This blog will talk about everything that keeps me going as I walk this strange path. A movie review or a discussion of a book may seem oddly placed, sitting amongst talk of operations and infections. A reference to Michelle, perhaps, slightly less so. But they are the medication you don't have to collect from the pharmacy. If I meet the challenges of my treatment with any grace or courage it is because of them. 

Bruce Hodder

Making a Will

Making a will is not what you want to think about when you have cancer. You're too busy trying to live to make preparations for your death. But I've known for a while that it was something I should do. I don't have a lot of money in the bank, and by the time the present economic nightmare is over I imagine I'll have a lot less, but I want to make sure that whatever's left when the Grim Reaper finally comes knocking for me goes to the right people. 

It won't mean I die any sooner, having my directions down on a legal document. It won't even mean I die of cancer, necessarily. I could get hit by a car tomorrow walking down to the Premier store for peanut butter and Dr. Pepper. Or I might live for a thousand years. 

What it will mean, making a will, is that I can relax knowing when I pop my clogs the people who outlive me are going to get a contribution to an undoubtedly expensive funeral. My desire is to have my ashes scattered in Midsummer Meadow over the River Nene, where Michelle and I had our first date, but I'm sure the service still won't be cheap.

So the question is: how do you make a will if you can't afford to pay for a solicitor, not without diminishing an already diminished funeral fund anyway? 

Search engines quote an average cost for a simple will as anywhere between £144 and £240. That's pretty hefty for many of us, especially when we're paying that much every month in energy bills. 

I've seen one quote on Money Saving Advisors offering will writing services for £19.99. That has to be worth investigating. There's also National Free Wills Network to think about. They work in conjunction with national and local charities and send you a list, on request, of solicitors in your area who write your will without charge. I received their information pack yesterday. It shouldn't be too hard to choose, from my list, a solicitor to contact. There's only one who provides the service in Northampton. 

In exchange for their time the Network asks, but doesn't require, a contribution to charity. I think that's pretty reasonable. I will be leaving something to Cancer Research UK. What I give won't be enough, but I genuinely believe that all of us working together in whatever way we can will improve treatments and outcomes bit by bit, until one day cancer will no longer take our loved ones away from us as casually as branches being cut from a tree.

Bruce Hodder

One in Two: My Cancer Story

I was diagnosed with cancer a year ago this month. I've been keeping a private journal of my treatment and experiences ever since. But it crossed my mind today that it might be more constructive and even interesting to bring that journal online.

I'm inspired by Deborah James, or Bowel Babe, to do it. She went public with her cancer diagnosis, very public, and in so doing she inspired and encouraged a lot of people going through the same thing. I'm also inspired by Adele Roberts, the Radio 1 dj who, after her own diagnosis, changed her stoma bag on national television to destigmatise that most undiscussed aspect of cancer care. 

We lost Deborah James this year but Adele Roberts is now, mercifully, cancer free. Long may she remain so.

I am still in the middle of my treatment. I was pronounced terminal last year, but the doctors at Northampton General Hospital are still working on my behalf. They took a large growth out of my bowel in June. Now I'm waiting to hear whether they'll treat the cancer in my bladder with radiotherapy or an operation.

It is a strange between-state, this waiting for word. But I am well, so far; I feel well, and people tell me that I look well. I can't ask for much more in the circumstances. 

I have five wounds in my torso from the operation on my bowel and it's been confirmed today that I have a second infection in one of them. Luckily, it's not like a urine infection. I've had a few of those and they made me absolutely crazy. I don't feel any different with this infection; the infected wound just produces more gunk.

Michelle, my partner, will be bringing home antibiotics from the pharmacy later and I can start getting on top of it. The only pain in the bum thing about antibiotics is the way you have to co-ordinate when you take them with the time of your food consumption. Even during chemotherapy I liked to raid the cupboards on a whim and eat everything I could find that was sweet and easy to open.

Bruce Hodder