Survivor Guilt

If my prognosis is correct then “Survivor Guilt’ ‘is something that I do not have to worry about for much longer. However, I am still very worried that the terminal diagnosis I have been given (and told everyone about) will be wrong, and I will look silly. In other words I am more worried about not dying than as I am about dying!

How ridiculous is that! What if it doesn’t happen and I die 30 year’s from now in my bed? Destitute and no family or friends? They used up all their energy in the first few months, years etc. Now it is a standing joke, another lie (perhaps he’ll) never die!). One for a Ditty.

All that sympathy, pre-grief, etc. wasted. It could have been used on someone who deserved it!

Prior to my cancer coming back I even had counseling sessions to help with my survivor guilt! What a fool!

Instead of just accepting how lucky I am and making the best of it, I wasted time worrying that I was not dying, and that I would look silly! I wasted time worrying about the people who did not make it. Did this help them, or me, or anyone else? No.

And all the time there are people who have a similar prognosis as me doing amazing things, raising millions to fight cancer, inspiring those around them. They are (were)amazing people, how do they do it, why can’t I? Why should a lazy, lying, good for absolutely nothing, like me, live and these brilliant inspiring people end up dying?

For instance, Deborah Jones (Poop Girl), springs to mind. She was such an amazing person with everything that she achieved, and all I can do is go ‘crying in my soup’ about survivor guilt!

Don’t get me wrong I was never going to raise millions in charity money, never going to inspire other people to do so. I guess the people who do this sort of thing are already special and would have done something special whatever happened, the cancer would be a catalyst for them not a eureka moment.

But at least I could have made the most of the time that I have. That is the greatest sin, wasting the precious time that is before me.

So I need to do something that I would not normally have done…

Even if it is to tell my family that I love them!

Survivor Guilt

Focusing on ‘survivor guilt’. After being given the ‘all clear’ from lung cancer I was racked with feelings of guilt. My reasoning was as follows:

On the day that I was diagnosed around 129 people in the UK were going through the same experience and emotions (from Google AI Overview). Looking back at the articles in this blog it felt like a death sentence, and that is how it is playing out, albeit a lot slower than I had anticipated. There are a lot of confusing statistics for survival depending on age, health, type of cancer, etc. but I settled on a 20% chance of still being alive in 5 years.

Well, here I am seven years later, and whilst I would like to say I am going strong, I am not. What I can say is I am not dead yet, I can still smile, I can still laugh, I can still hug my family and tell them I love them, I can still write this blog! The first five years were full of hope, I was fresh from the initial fight and felt indestructible again. I had beaten cancer, or at least so I thought.

And then I hadn’t. It came back, this time determined to do a ‘proper job’.

I thought I was cancer clear and this triggered ‘survivor guilt’.

What is ‘survivor guilt’?

Maggie’s define Survivor Guilt as “…common among survivors of traumatic events—such as war, natural disasters, accidents, and even acute or long term illnesses such as cancer. Survivor guilt refers to the sense of guilt or responsibility that can occur when one person survives a traumatic event that others did not’… Cancer can be a traumatic event too…. (Moving beyond survivor guilt, Cancer Treatment Centres of America)

My guilt was driven simply by the fact that I had survived a cancer that should have killed me, much earlier and I was not making the most of of the time I had been given, the time that most of the other people, who were diagnosed on the same day, did not get.

I had the ‘gift of time’, a gift more valuable than I could have imagined.

I was not jumping out of airplanes, climbing mountains, walking to Katmando. I was not raising vast sums of money for cancer research, I was not sharing my experience to give hope to others, I was not bringing any joy to the world or my fellow cancer sufferers. Why?

I wasn’t doing it when I didn’t have cancer, why would having cancer change this? It can change things, you see the amazing people on the TV, like the Poo Lady Deborah Jones. People say “…it must change your outlook on life, wanting to make the most of every second?”. I was sitting wallowing in pity for those who no longer wanted or needed it. No it was worse than this, it was self pity, the absolute worst of them all!

I had some counseling sessions and they said “give yourself permission to be happy!” and “…do things that make you happy”. I did and to some extent it helped a bit.

A new start

This is a new start to my WordPress account. A lot has happened since I last posted, and the first thing that I need to do is bring things up to date. A bit boring, but I can’t promise that anything coming after this will be any less boring.

If you are a reader of this, then it is not really intended for you. This is for me. This is my therapy. This is intended to be cathartic.

So here goes…

I was diagnosed with Stage 3B Lung Cancer in May 2017. I had 3 months of radiotherapy and 4.5 years of chemotherapy, before PET scans gave me the all clear at Christmas 2021 . The Consultant said “…if there is any cancer there then I will treat it as a new primary…”. As far as I and my family were concerned I was cured. I was fit and healthy and still walking 10,000 steps a day, on average.

I stopped the chemotherapy and felt amazing…for a month. However, the step count started to drop and breathlessness started to take over. During the next few years the breathlessness continued to worsen. I stopped walking, and kept working. Breathlessness was making getting around difficult. The mystery was that the Consultants couldn’t see any change in the lungs and could not explain the increasing breathlessness.

I had broad range of hospital tests all over the body, I had cameras inserted into every orifice, including the one at the end of my penis to check my bladder. I think that this is the point where I started to loose all of my dignity. Two people chuckling about what the doctor had for lunch and apologizing that there hands were cold as they inserted a camera in the tiny little hole that I wee out of. It was a very small camera but in all honesty it felt like a whole camera crew was going in!

Despite all the tests they could not find out what was causing the breathlessness.

In June 2024 I went into the Royal Brompton Hospital to treat a plural effusion that had formed on my right hand lung. It was a routine procedure and I was expecting to be in hospital for a couple of nights. 3 Months in intensive care later I returned home after I had suffered Respiratory Failure and the discovery of a tumor deep in my brain. My breathlessness was now very bad an I could hardly walk more than 10m. They also discovered that the original cancer has spread to my brain. Stage 4 Metastatic.

The prognosis from here (May 2025) is months to live rather than years. Although I reckon I am tougher than a couple of months but we will see.

I am now under palliative care and unable to work.

What I hope will follow are my fears, hopes, dreams, and potentially prescription drug-induced ramblings about everything, not just cancer.

From here and in everything that I write I do not intend to offend, upset, marginalise or make anyone uncomfortable, that is why the preface says this is not for you to read. I truly believe that all people are equal and should have the opportunities to live their lives in peace.