Why Symptoms are Important

Symptoms

I got mine, on and off, sometime before 17^th August 2017. They looked like this.

I was lucky. Not everybody gets these signs. They might as well be a letter from God saying ‘Go to the Doctor’ but, if your life has always been cancer-free it is logical to think it always will be. The symptoms come and go so it was easy to ignore them. Don’t do that.

But I read a leaflet, and a blog and an old friend told me a gripping story of her illness, ending with ‘ if you ever get a bowel problem, get to the doctor as fast as you can.’ I did

Diagnosis

For the record, the colonoscopy was painless. I flew into that room, high on sedatives, and came out with a 4cm tumour and a few thoughts.  They went like this.

1. I don’t want to die. 2. There is no easy way out. 3. Some of the things on the list of things to do are not important.

How Bad is it?

After diagnosis, you have to find out what can be done. There were scans, panic attacks, and too much sympathy. I did a lot of googling, pretending to be OK, and pondering about the inevitable advice to eat turmeric. It had to be raw apparently.

It took 10 days to discover that the cancer was contained and operable. Not everybody gets that news. To this day I am still glad about the leaflet that looked like this.

The abandoned list of Things To Do was now a distant memory and I got the first sniff of a bi- product of getting sick, a vague awareness of what really matters in life, something about being alive in the first place.

Treatment

This involves being maimed, burnt or poisoned. The high of finding yourself in the potential survivor’s group wears off. It took 7 hours to remove a quarter of my colon and install a temporary stoma bag. Two days later I ate too much and my digestive system closed down.

This is an unpleasant but common complication. I told the nurses loudly that I was definitely dying, they said I probably wasn’t and stuck a tube down my nose. After a week with that tube, no fun, no food and a whole lot of morphine I went home with joy in my heart and a tramadol habit.

All I needed now was 6 months of chemo, another operation to reverse the stoma and I was done.

I did learn a few things along the way:

Hospital life and getting home

The first few days after the operation don’t matter, because you won’t remember them.

Ask for sleeping tablets and then you will miss the weird things that happen at night, like people falling out of bed and nobody noticing. 

Hospital stays are about judging people.  Which is the best nurse?  Who looks most stressed?  Why can’t they make proper gravy?  What is the new patient doing wearing makeup and looking glamorous when the rest of us are grey and pale?  How come her visitors are laughing, do they think this is all funny?  Is the one with painful piles just making it up?

Tramadol is pleasant, but stop taking it if you find yourself admiring a bus stop, especially if you were pain-free before taking it.

Daytime TV is boring after the first hour. Crying and complaining wears thin on your family. They may wonder why they were ever glad you are going to live. If you have a nice family they won’t say that.

It is unreasonable to ask to be left alone, and then complain because nobody brought you a cup of tea.

Oncology can be a Happy Place

My chemo was easier than most. I ate pills, got sore feet, forgot things, and slept for six months.   

Every three weeks I went to oncology for checks, cups of tea, chats with strangers and a sense of normalcy from the army of kind nurses and volunteers. It is the most upbeat ward in the hospital, full of determination to make people better. I was almost sad when they told me not to come back again.

 After Bowel Surgery

10 steps away from the toilet can be lot further than 5.

Stoma Bags

Living with a bag is OK. It is an amazing, neat invention to let the bowel rest and mend. It is easy to manage, but it is one more thing to deal with. Mine was reversed after 8 months and I appreciate the freedom. But many people sensibly choose stomas over coping with badly behaved bowels. If I had one for life it would have been fine.

It is Hard for Friends

At first, I was interesting, so I got attention, but you can’t stay interesting for half a year.

There is an equation for cards and visits.

Operation 1 + (seriousness of illness x size of operation) x length of time in hospital x (number of people who have an interest in staying on your radar in case you live) = 34 cards + 8 hospital visits + + 4 bunches of flowers + 3 house plants.

Operation 2 + (lack of interest + novelty factor) x faded off radar = 3 cards + 2 hospital visits + some flowers from the garage.

Poor friends. You go from being available for fun, and ready to hear their problems, to a weepy, self-obsessed shadow. If they visited I would be asleep on the sofa, if they didn’t, I complained. And God help anybody who said how sorry they were when they should have said how lucky I was to survive. I’ve still got those friends somehow and I am glad about that, every day. 

The most common question was ‘How did you know?’. I told them this.

Medics are Gods

My surgeon is head of the team, a leader in UK research and always 2 hours late. You wait for people like this. You are grateful for 5 minutes. He gave me 7 hours of undivided attention, twice, and I was asleep, both times.

A year ago I bumped into him. Anybody else would have seen a middle-aged man getting into a car, as a normal person does. I saw a demi-god. I rushed over, gabbling my thanks, red in the face like a star-struck fan. He was confused because he had no idea who I was, but I think he quite liked it in the end. 

Life

Is different now. All that is important does not matter.

Family irritations, who left a cup in the sink, the to-do list, future plans, why is so and so being annoying?  Bla, so what. I’m not going to die. Oh yes, I am going to die one day. What am I waiting for? 

Surviving any serious illness is an opportunity to review. Yes, it is scary, uncomfortable, tiring and painful. But you look at life and sometimes say. ‘I don’t care, life is too short’. You realise you can do what you want.

So I bought a kitten.

She looked like this.

Four years later she looks like this

All because I read something like this

And a lot of luck. The symptoms don’t always follow a neat line or show up in time. Many people don’t get a story that ends this way, and that is not their fault.