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.

Selfish

If I had wish
I wouldn’t use it
For the fear
That I would abuse it

I’d pretend to wish for others
Perhaps my brilliant and wonderful brothers

But truth be said
I’d wish for me instead

Selfish to the end,
It drives me round the bloody bend

I can’t be what I ought to be

And that’s because of the devil in me.

John Frank Trent 20/7/25

The NHS has lost the recipe to toast

The NHS has lost the recipe to toast
And what worries me about this the most
Is it really is a simple thing
To toast the bread and make it sing

Firm and crunchy it should be
But no … soft and floppy is what we see
The ice cold butter just won’t spread
It snags and rips and tears the bread

And when it comes to cut in half
It goes well beyond a laugh
The knife is as blunt as a spoon
No way through that crust soon

John Frank Trent 01/06/25

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.

Chemotherapy…

This is a very short no frills post about how I feel right now.

I had chemotherapy this week.

It feels like someone turned up gravity. Everything is heavier, everything is more difficult.

My brain has been squashed and feels like it is only maintaining the minimum of cognitive function.

I feel stripped bare. Like a beach when the sea has gone out and all that is left is desolate wet sand and debris.

But like the beach I know that the sea will return with all the vigour and life that comes with it. This is why it is worth it!

Silver bullets…

The problem isn’t a lack of silver bullets…the problem is we are not fighting werewolves!

When I was diagnosed, I was told that there were three things that I could control.

1. My physical exercise,
2. My diet, and
3. My state of mind

The rest, I was told, was down to the doctors.

All three of these points are easy to write down in a list. Also, with a little effort and some reading they are easy to talk about, seemingly from an assured position of knowledge.

However, actually doing all three, or even any one, was more difficult than I imagined. I am sure that if you already had control of these three things in your life or if you are some kind of amazing machine it would be relatively easy, in which case you have my respect. For us mortals it just isn’t that easy.

Before I was diagnosed, I went to the gym on an ad hoc basis, I ate rubbish food and drank too much alcohol, although I would never have admitted it. My attitude was simple…I am indestructible…I had never really been ill and cancer was a word that you didn’t even say.

I didn’t need a three-step philosophy.

And now these three steps are the cornerstones of my life. And don’t be fooled into thinking that I am fabulously successful in any one of these areas, just a bit better than I was. And that is the point, you don’t have to radically change your world you just have to keep making small adjustments.

Starting with physical exercise. I have retained my gym membership over the last two years and never once been to the gym. A common story I know and my reasons for not giving up the membership are also pretty common. I intend to go…when?…who knows?…but if I give up my membership I lose the opportunity…I lose the dream of going. Whilst I can dress this up any way I like, not going to the gym for me has nothing to do with cancer! If I wanted to, I could devise a workout that would be safe and I could find the time.

However, my exercise box is ticked by walking on a regular basis. My target is to walk an average of 10,000 steps per day. To start with this was a daily target but it soon became self-defeating as it is impossible to walk 10,000 steps on a day when you have been on an IV drip for seven hours whilst also fitting in a dose of radiotherapy! So rather than beat myself up I changed it, to something that worked for me. My phone averages my step count over a month and therefore my target is now to walk an average of 10,000 steps a day, over the period of a month. Good days I walk more and bad days I walk less. Most months I achieve my goal and some I don’t, and that’s ok. The important thing is I have a goal. A goal that drags me out of bed on a Saturday morning to walk to Blackheath and eat eggs on toast, drink cappuccino and listen to a book or music on the way.

The Saturday morning ritual ticks all three boxes and I look forward to it. During the week I walk to the station as part of my daily commute and when I can I walk between meetings in London.

My target works for me, because for the most part it is embedded into what I do anyway. I picked something that I knew I could achieve the majority of the time, made it a ritual and threw in some treats to keep it fresh.

Walking between meetings in London is great and can be an eye opener. Firstly, you avoid the underground! Secondly, when I walk, I take different routes and discover all kinds of strange things around the old streets of London. The other day I discovered The Old Curiosity Shop in Lincolns Inn. It made me happy…two boxes ticked!

Then there is diet. I started this essay with my reference to silver bullets and if the books and internet are to be believed then silver bullets, in the form of diets, are abundant. I am sure that the majority of them are fantastic and some can even have an impact on cancer. But cancer is not a werewolf. It is almost infinitely variable and complex…

If believing in a miracle cure works for you and you can maintain the change then great… it didn’t work for me. I read the books and brought the ingredients but could not sustain it. The end result was that I beat myself up about it… if only I was stronger willed…better organized…like the people from the book or the web site…perhaps then…NO STOP.

You can’t eat the elephant all at once…you have to take it a bite at a time.

(Just for clarity I do not advocate eating, or for that matter any harm, to elephants they are majestic creatures and probably a bit tough!)

So I took bits from each of the wonder diets that I had read. I took the bits that I liked, that were easy to implement. This way there was no regime to follow, no expectation of a wonder cure, no unpleasant smoothies. Just food that I liked and made me happy, two boxes ticked.

The change has had a more surprising impact on me. When I go to a restaurant these days I am as happy ordering a superfood salad as a fillet steak. For the first time in my life I no longer choose the default ‘favourite’ meal. Now, I give myself a choice. I was not adventurous with food and would have stuck to the default ‘favourite’ meals until I was ninety!

Circumstance helped me to make this change. Radiotherapy had damaged my oesophagus making some foods difficult to eat. I was forced to pick food that was easy to swallow. At first when faced with a superfood salad I was…it’s only for a bit…oh that was really refreshing…and quite tasty…I will have that again…

I love eating salad…there I have gone and said it. Not for every meal but on a regular basis. This change did not come about because I read a book or web page, it was not down to the wise words of a guru. It was part luck and part necessity. It happened slowly and with no pressure. The organic changes that have happened in my life happened for various reasons but I have been able to sustain the changes because they matched at least one of my three goals.

The last of the three is my attitude. This is an essay of its own (to follow) but simply put; I started to recognise and enjoy the small things, that make me happy, but that I had somehow taken for granted in the day to day journey of life. For instance, on my walk to Blackheath I pass beneath some cherry trees. The blossom in spring is beautiful. It makes me happy…if I allow it to…the strange thing is I had to give myself permission to recognise and enjoy this strange fleeting moment of happiness…it is as though I had to look at the world as though I were three years old again…