30 August 2022

Simon kindly shared his personal story for our Auguts campaign in which he briefly mentioned issues over  holiday insurance. He has since joined our People and Research Together (PART) network. In this blog he expands on the troubles he experienced getting affordable travel insurance after bowel cancer surgery.

 “What fresh hell is this” sums up large parts of my cancer journey.  It covers mundane everyday occurrences that I used to take for granted but which now appear like major barriers to a normal happy life –  including travel insurance. But more about that later.

The first hell is being diagnosed with cancer by someone you hardly know in a functional office. Doctors must be trained in how to deliver the news – no ambiguity and quickly. I was diagnosed with lower bowel stage 3b cancer in June 2020.

I vividly remember my GP on referral telling me not to worry about being seen by a cancer specialist. It was a hot day when I saw the consultant with what I was convinced were piles.

Due to Covid, I was alone and with my wife waiting for me in the car park. I remember bursting into tears when I told her. If anything, my next consultant meeting was even worse – I was told that because of where the tumour was I would need to have a permanent stoma and basically my rectum sealed following major surgery. A slightly surrealistic origami type drawing was produced to show the procedure.

I was told about treatment – chemo and radiotherapy followed by an operation and at some stage numbly signed consent forms. Treatment was hell – I became doubly incontinent and literally lost weeks of my life when I cannot remember anything.

My wife suddenly became a carer and my bedroom floor had to be covered in plastic sheeting. I was hospitalised for a week as I was hallucinating so badly. I thought hospital was a literally a prison in Lebanon (where I have never been) and remember telling one of the nurses that Croydon looked like Las Vegas (a comparison I suspect no one else has ever made!) and I kept trying to escape.

Ironically just as I was starting to feel a bit better at home I had to go to hospital for an operation that lasted over 11 hours. Nothing prepared me for intensive care – especially the number of tubes and drains that were attached to different parts of me. Nor was I prepared for how different my body was. The research of the effects of even one night in intensive care are scary.

Much more exciting things happened in hospital – including getting pneumonia and I vividly recall being on a normal ward – especially at night. The constant noise of beeps from drips, the endless cries of “nurse” from patients unable to reach call bells, different agency night staff every night – which meant a total lack of routine at night. In hospital predictability is good.

So why am I focusing on some of the traumatic parts of my illness when writing about holiday insurance? For my family holidays have always been important and where we have created some of our best memories. When I semi-retired travel was a key part of our plans. My illness (and Covid) wrecked those but even at my very lowest thoughts of travel kept me going.

After leaving hospital it took months before I had the stoma confidence and strength to take some breaks in the UK. I particularly remember a few lovely days in Cambridge and the delights of three days in central London (even though we live in West London).  We started to reorganise our cancelled holiday on one of the Florida Keys – somewhere where we have been several times when the children were younger and who were planning to join us. But at Christmas 2021 a scan showed my bowel cancer has spread to my left lung. The familiar routine of scans and tests restarted – if anything it was worse this time as any intellectual curiosity in any part of the process had long gone. My left lung collapsed after a biopsy. Treatment options were suggested and then discarded – I bounced as a patient between three hospitals.

We cursed ourselves for not going abroad and taking the opportunity to travel when I was seen as cancer free and well enough.  We vowed not to make the same mistake.

I eventually had intensive radiotherapy in April 2022. Apart from a bit of fatigue I felt fine. I knew there would be further scans to determine success rates but now was the time to go abroad. I was confident I could manage my stoma and the nature of my cancer means that I am not suddenly going to collapse.

Like many people, we had travel insurance through our bank account. But it was clear that insurance would not cover cancer. Never mind, I thought, as I Googled insurance companies and looked at the Macmillan site there appeared to be a range of providers so it should be not that difficult – though perhaps more expensive. Little did I know I was about to start yet another round of what fresh hell is this.

Helpfully, I thought, a number of websites (including the big Cancer charities and Gov.UK) point you in the direction of over 30 specialist providers for people with cancer. I thought a couple of phone calls and this issue would be dealt with. All this for a week’s holiday in Spain.

My first phone call went through a range of firstly innocuous questions and then asked about my cancer. When I explained I had treatment, felt fine but did not know the outcome the answer was a flat “no we can’t offer you insurance”. When I tried to ask why – my cancer is not the type that would lead me to need urgent medical assistance, I had no symptoms and was pretty fit (walking at least 12,000 steps a day) nobody was prepared to offer an explanation. The same depressing conversation happened five more times – all the firms used identical questions. There was no flexibility and it was depressing.

I thought I would try some of the recommended firms on line. Perhaps naively I was surprised to discover that the questions were identical to those asked on the phone. I felt my life was being governed by a formula that showed no empathy – and that the way news was broken about not being able to gain insurance was at the best heartless.

In some desperation I decided to try one more firm on the list, and luckily encountered an empathic person on the phone. He listened to me and told me I could always ask for insurance with pre-existing medical conditions excluded. I said yes please and received and accepted a single travel quote of just over £20. In the meantime a so-called specialist insurance firm responded to my conversation with them with an insurance quote of £2300!

Of course I knew all insurance firms use probabilities and formulas when assessing risk. But cancer – irrespective of type – seems to be treated the same. I was not treated as an individual but simply fed through a process.

At one stage it even appeared easier to gain insurance if I had a terminal condition. Guidance on health insurance for people with cancer is complicated and sometimes difficult to follow. There is no empathy in the system, which for people who have been through traumatic experiences – which I have – is really difficult. Thanks heavens for the one insurance company empathic person.

A related issue is that now we have left the EU EHIC cards (which gave you access to emergency healthcare across the EU) appear to no longer be in place, replaced it seems by a GHIC card which essentially functions the same but appears not to be well known.

But to finish on a positive, my family has now enjoyed three one week holidays abroad in Europe this year. The difference this has made to me and my family has been huge. My confidence in managing my stoma whilst travelling and being abroad has been a real bonus. If my next scans show an improvement and no more treatment is needed then perhaps this process will become easier and I can venture further. But I cannot tell you how grateful I am to the kind man who answered my phone call when things were looking increasingly bleak.