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A Papillon Treatment Story

Something wasn’t quite right. I noticed he was not his usual self on holiday. It transpired that he had been to the GP six months ago with suspected blood in his stool, but a Faecal Occult Blood Test which had come back negative. Sadly, the GP didn’t ever say that if symptoms persist he should come back. He hadn’t shared this with me as my father had died suddenly from cancer at a relatively early age and he was protecting me.

I hastily arranged a GP appointment for our return from holiday and he was referred under the two-week rule to the Colorectal clinic at the [Royal Surrey?] hospital. In the following two weeks we experienced a range of emotions and spent a great deal of time self-diagnosing, agreeing it must be Irritable Bowel Syndrome (IBS). On the day of the appointment with the consultant he was told there was definitely something there and it was most likely cancer. The next few days dragged by in a sleep deprived blur with us both barely able to function. He had a colonoscopy CT and MRI scan and were hugely relieved to hear it had not spread.

We met with the surgeon early the following week who explained that the likely outcome was major surgery resulting in a colostomy bag. This would take place after a course of radiotherapy and oral chemotherapy to shrink the tumour and then a new treatment called “Papillon” to shrink the tumour further. I left the meeting daring to feel a little positive – this could be treated and cured. His reaction shook me to the core “it’s my body and I’ll make the decisions as to what treatment I receive”. As we talked, I began to understand that for him the prospect of living with a colostomy bag for the rest of his life from the age of 46 was something that completely terrified him. The idea of dealing with this was more than he could remotely comprehend. For me it was black and white – we had a young daughter, choice didn’t enter the equation. Another sleep deprived night ensued – his first words the next day were ” of course I will have the surgery, I just needed time for it to sink in”.

The following week we met with Dr Alex Stewart, Consultant Clinical Oncologist, who explained the radiotherapy/ chemotherapy regime and explained at the end of this he would receive this new Papillon treatment. He made the decision immediately that he would continue to work until the effects of the chemotherapy became so overwhelming that he couldn’t continue. We got into a routine with radiotherapy, balancing side effects with moments of what felt like “normal life”. There was a short break before the Papillon treatment. Dr Alex Stuart gave us the incredible news that the tumour had reduced from 5cm to 2cm and was now the perfect size to respond to Papillon. What we quickly realised from talking with Dr Alex Stewart that the aim of the Papillon treatment was to negate the need for surgery.

Six weeks later we met with the Surgeon who felt, although there was no evidence of the cancer, it would be risky to not have the surgery. Feeling confused we met with Dr Alex Stuart again. She went through everything with us again providing us with up to date statistics regarding Papillon. We left feeling more confident in our decision. He went on to have a further six months of tablet chemotherapy to reduce the risk of recurrence by a further 1-2% with an overall recurrence risk of 10-15%. It was a long six months but somehow he dragged himself in to work every single one of those days. I was so very proud of him. This time he wasn’t able to do much at all at the weekends and needed time to rest. Within a few weeks of completing the chemotherapy he began to feel like himself again, still very tired but with every week that diminished a little.

We are now at the stage of 3 monthly sigmoidoscopy checks, MRI and CT scans. It feels slightly unnerving to not be in constant contact with the oncology team; this we are told is a common feeling. We become tense and nervous every time the 3 monthly check creeps up on us – will this be the time we find out it has come back. We are 15 months on from the last Papillon treatment and in general life is now back to normal. It is still hard to manage anxiety around new symptoms. A pulled muscle in his back just before Christmas sent us into a complete panic as it wasn’t that far away from the original cancer site. The health service were amazing; a GP appointment was given immediately and within an hour an X Ray had been performed as a precautionary measure. It is always there the fear of it returning but for now it’s a very manageable fear and I hope that continues. We are acutely aware of the “time landmarks” which reduce the recurrence percentages. The two-year mark is now not so very far away.

Papillon treatment is offered in only 3 centres in the UK and one of them is on our doorstep. Had we lived somewhere else we would not have been referred to Dr Alex Stewart and he may have had surgery resulting in the colostomy bag he so feared. Neither of us would have researched an alternative to surgery as the diagnosis was such a shock and we were just anxious for the cancer to be gone. It is absolutely clear that the treatment we received has afforded us an entirely different quality of life. We genuinely know the diagnosis could have been so much worse, we feel humbled by the outstanding level of care and treatment we received. And from someone who speaks pigeon French I know I will never forget the French for butterfly!