I had not anticipated writing a journal entry at this point. I am on a treatment break, in the gap between the end of radiotherapy and the follow up scans that will dictate if surgery is possible. I am feeling really well at the moment; The best I have felt for months. I am eating normally, not fatigued and getting out for some decent walks. Last week, I walked the hilly 10 miles from my home to the picture perfect Porlock Weir and had lunch in a pub. Almost normal…well, I was so tired that I went to bed at 8pm and slept for 10 solid hours.
And then…
We had a video link consultation with the surgeon at St Marks Complex Cancer Centre in Harrow.
You may never have heard of TPE for bowel cancer? I had not.
What we were expecting was quite a big operation and the probability of a stoma to replace my bottom. My cancer, sitting on the junction of my rectum and anus, was always going to be a challenge to remove. It’s too close to the outside for a neat bit of pipe shortening. And it’s holiday home in my groin lymph nodes added an extra dimension of complexity.
The surgeon showed us scans from various angles and explained what everything was. I have a biological sciences degree and the responsible adult is a very experienced and highly qualified medical professional and we could clearly see the primary cancer nudging into the side of the bladder. It was not invading the bladder, more expanding the side of the rectum, and, in the confined space of my pelvis, leaning on the bladder, like a slightly drunk mate in the pub. The much enlarged lymph nodes were being similarly chummy with my prostate.
The surgeon explained about margins and how it is necessary to remove a border of healthy tissue around the cancer to reduce the risk of any cancerous material remaining.
My safety margin involves removing my anus, rectum, bladder, prostate, groin lymph nodes and seminal vesicles. TPE, Total Pelvic Extermination (or it may be exenteration?). My penis, with little to do, will be hanging around on the far side of my body’s very own empty quarter.
And not one stoma, but two. Left side for poo and right side for wee.
15 hours on the operating table and three weeks in hospital. And 9 months to a year recovery. All kinds of quite likely (30% or so) potential complications and only a small, 2%, chance of actual death during or soon after the operation.
This was quite a lot more than we were expecting and it’s fair to say that we were quite shocked.
An option would be not to have the surgery. I am feeling well and I have only actually been ill when I have been being treated, so I could just take my chances with the cancer? What’s the worst that can happen? I die, so? it’s gonna’ happen sometime.
That was 48 hours ago and now I am mentally ready for the surgery and while recognising its seriousness, I am feeling quite buoyant*. What has happened to lift my spirits so markedly?
I’ll share a secret, listen carefully…
I asked a question. And that question was, ‘I’d like to talk to someone who has had this operation’.
A nurse was present at the consultation, and she waved a thumbs up at this question and tapped away on her laptop. I followed up with saying how I wanted to get back out into the woods and mountains and the surgeon suggested I speak with a previous patient who was going to walk from Lands End to John O’Groats; The surgeon and nurse exchanged a glance and more keys were tapped.
A little while later an e-mail arrived from the nurse, with various attachments and links. I did not look at them on the day of the consultation. I was shattered; mentally battered by the information and feeling defeated. It’s been a tough nine months; horrible and useless chemo, bollocks burnt with radiation, fatigue, nausea, constipation, diarrhoea, biopsies, scans and countless cannulas, needles, and several cameras up my bottom. Frankly, I was ready to give up.
Now, I’m not an expert on human psychology, but just observing myself since my diagnosis and how I have responded to the various treatments and outcomes, I think we are mentally tough and optimistic. So, after a fairly sleepless night, I got myself down to the gym for a cardio and weights session**, came home and started looking at the e-mail and attachments.
The deal maker was several talking-head videos of patients relating their experience. They spoke about their time in hospital, the complications of their cancer and the hugeness of the surgery. They were a wide spectrum of people; male, female, young and not so young. And with a variety of backgrounds.
And they talked about life after the operation. They were living their lives after this huge, huge surgery.
These were ordinary people, doing ordinary things, with ordinary everyday problems to deal with. These are extra-ordinary people.
I don’t think that I am prone to hyperbole and I am cautious about using words like inspire and passion. Listening to these people helped me see beyond this terrifying operation. Is this a ‘light at the end of the tunnel’ moment? Maybe. Thank you guys, appreciate it.
And I have spoken with the Lands End to John O’Groats walker. He will be passing within a mile of my house just a few days before my likely surgery date. We can walk and talk.
*I have been drinking beer, this increases buoyancy
**I need to be fit for this operation. I have organised a fitness programme with a sports coach qualified in re-hab and pre-hab. She may not be aware of the beer/buoyancy balance.
