Robin's Story

My story began in 2015, at the age of 65. We had a great year going to South Island New Zealand and  Singapore for 4 weeks in February, with a couple of friends and had a fantastic time. Came home, tiled our daughters cloak room and then to the wife’s sister in June for a  week and went for a long bike ride but felt uncomfortable on the ride and had passed a little blood. I  thought it was nothing, maybe piles. Had done all the normal screening tests in the past, no sign of any issues. However, decided I should get checked out and made an appointment at the local Health Centre in June. I was examined by a doctor and she thought there may be an issue and I should be fast tracked to our local Hospital in Ipswich. Subsequently in July was seen by a consultant Mr. Pitt and told that I had a issue in the lower bowel. Biopsies, CT scan, Colonoscopy and MRI scan, confirmed I had just stage 2 cancer.

My worst fears as my mother had passed away in April 2005 from bowl cancer, and had  to live with a permanent stoma bag, after being diagnosed, several years earlier and struggling to cope with having a bag. I was adamant I was not going to have a bag whatever, my worst nightmare! I still wanted my holidays, traveling and as a normal life as possible. I had found it difficult to come to terms with, that I might never be able travel again. Mr Pitt was very helpful and knowledgeable, explaining the issues with me, also the possibility of specialist treatment ( Papillon ) at the Clatterbridge Cancer Hospital in the Wirral under Prof Sun Myint. Not guaranteed until seen by the Prof and assessed. Of course I would, even though it would mean nearly a 500 mile round trip from our home in Suffolk and a over night stay.  Your mind is all over the place especially when following an endorectal ultrasound at Colchester hospital in September, you are told by the doctor there that there is no alternative, to having the stoma bag for the rest of my life, he had no knowledge of the Papillon treatment.

 

I was back to see Mr. Pitt in Ipswich and end of September and under anaesthetic part is removed for biopsies. Following further discussion I was advised treatment would begin with 25 days of radio therapy and 35 days of chemo therapy tablets over same 5 week period, starting on the 2nd November and finishing 4th December. This was carried out very well by Ipswich hospital under Doctor Sherwin.  In the mean time, I had my first appointment with Prof Myint on the 16th December in the Wirral, a mid morning appointment, again your mind wondering can he help or not ? Prof Myint was very welcoming and made you feel at ease straight away, including my wife in all discussions, as I might add did Mr Pitt and Doctor Sherwin. Yes, he could help and I would have my first of 4 sessions after lunch. He is very passionate about his Papillon project and treatment. Therefore we were back approximately once a fortnight finishing in February 2016. The Prof keeps a very good eye on all of his patients with follow up appointments and we were back and forwards over the next 3 months extending to every six months and then yearly to the Wirral, extending our length of stay to make a mini holiday in the area. Crossing the Mersey and enjoying the city of Liverpool.

The My one issue I had with the Papillon treatment, was to be one of the few to get an ulcer where the tumour had been, it was quite painful at the time and set my recovery back, I would say by approximately 6 months. In the meantime I would have regular CT, MRI scans, endoscopies at Ipswich Hospital.  Always good communication between the Prof and Mr Pitt regarding my treatment, would even ring when I was with him. I was finally discharged by Prof Myint in September last year, 2020, all clear. I have as always tried to stay positive, with great help from my wife, especially, family and friends, difficult some times, but we got there. We are back to where we were and have been able to travel again, managing to tick off the Northern Lights in Finland, February 2020, a brilliant sight seeing them in the sky, thank you for making this possible.

I think my self very lucky, but would not have got there without Mr Pitt, his knowledge of the alternative treatment offered by Professor Sun Myint and his dedicated team at the Clatterbridge Hospital, in the Wirral.

Although it may not be suitable for every one, it goes without saying that is worth the effort to see if you can be helped by the Papillon treatment. Remember, surgery may not necessarily be the only option. Thank you all very much.

Robin, Mary and family

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Papillon Patient Support Website gratefully acknowledges financial support from Macmillan for its creation and on-going maintenance .

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