Pseudomyxoma-Survivor-CludeWhen I was 14, I used to lie in bed with this constant nagging pain where my appendix was. Every night, I was convinced that this would be the night it would explode, but it never did. Roll on 25 years and innumerable investigations and potions for IBS, haemorrhoids etc, etc. Nothing ever changed this pain. So I ignored it and got on with life, which largely revolved around being a highly stressed staff nurse and lots of body-damaging fitness (ultra-marathons etc).

Imagine my surprise when after three days of persistent right sided pain in 2016, during which I still went to work/exercised, a trip to the doctors suggested that it was time for the appendix to go! Ace. I had no classic symptoms, like nausea, vomiting, fever, I just leapt off the bed when the registrar ploughed his fingers into the site.

So on a miserable February day, I had it whipped out and noted the ‘disappointment’ of my surgeon that the appendix was “just a bit swollen”. That was the end of it, right? A few days of discomfort (I’ve since realised that keyhole does not mean painless!) and then back to work. I received the usual outpatient appointment letters and had rearranged five times due to work conflicts. I just assumed the appointment was for scar follow up.

The sixth time I tried to rearrange, three months later, was followed immediately by a call from a nurse who was barking at me that I “should attend the appointment immediately”.

“Why?”, I replied jokingly, “have I got cancer or something?”. Dead silence. “Oh”….

The appointments were a blur… “Peritoneal malignancy”, “mucinous material”, “low grade, low risk”, “Basingstoke” were just phrases and I wasn’t listening. Emotionally, I had always been quite stoic and hardened through nursing but found myself sitting on the bathroom floor, sobbing at what I perceived to be my end and how this would impact on my wife and daughters, especially my six-year-old to whom I was ‘superhuman’. I never drank, smoked, tried drugs, ate cleanly, exercised regularly – how was this possible?

Come July, I found myself sitting in the Basingstoke and North Hampshire Hospital with the rascally charming Mr. Dayal is probing what my knowledge is at this point. Like us all, Google was now pre-empting ‘Pseudo…’ for me and I filled my head with horror but also a lot of hope. It only took the reassuringly strong handshake of this man to convince me that I was going to be alright.

The phrase “if Professor Norman Carr¹ says you have cancer, then you have cancer” will never be forgotten. It was also high-grade disease, as a ‘cherry topping’. The operation was offered and exact horrors that would occur but I had already made my decision that I would endure whatever was necessary. No way was I waiting for this ‘thing’ to run rampant. I even reconciled that I may need a stoma, my worst fear, but who cares? “Plenty of Instagram stoma users proudly showing their bags. It’s societies problem to deal with the stigma, not mine”, I assured myself.

Come the 6th of September, I found myself in ward C2 at Basingstoke and over the next two days met some incredibly dedicated and lovely clinicians. I approached the surgery as a physical challenge. Applying the same stubbornness I would to getting over a mountain.  I was going to stand up that day (I did). I was going to walk by day 2 (I did). I was going to make it to the lifts, whilst doing the ‘pseudo-shuffle’, bogged down with bleeping machines and buttocks flapping in the corridor wind (I did!).

Ten days later I walked out of that ward, holding up my trousers, minus a third of my colon and anything else that was dodgy. I kept my belly button though – no-one told me that comes off normally!

Three months later now and I’m back to work. No further chemo needed. I’m back to moderate exercise (I ran 5k three weeks later but that was plain dumb!), eating and drinking is fine. My bowels are functioning perhaps more ‘efficiently’ than I was used to but hey ho! I didn’t have a stoma and kept my spleen. Everyone is different and no one experience is going to be repeated but there are consistencies. I’m pertinently aware of my good fortune and will remain ever indebted for the help I received.

The biggest hurdle is the psychological one. Scars heal and plumbing sorts itself out but trying to reconcile that you ‘had’ cancer and it is no longer in your body is pretty strange. That’s where this site and the support group comes in.

I hadn’t accessed this site’s group because I didn’t want to be pessimistic but it is filled with hope and stories that are comforting and reassuring when your clinicians can’t give you all the answers. I hope my comments in it and story have given someone encouragement when they have found themselves in the position I did.



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