Joanna's Story

Two years ago while waiting to be wheeled down the theatre for a colonoscopy, my consultant came into the room and told me the results of my biopsy. All very matter of fact, no drama, no hand wringing, just ‘by the way it’s an adenocarcinoma, but don’t worry, I’ve got a plan, will discuss when you come round.’

 

In a heart beat, I was a member of a club, I never wanted to join! 

 

I’m fit, lots of exercise, tennis, cycling, swimming; slim; healthy (or so I thought) – how could I have cancer?  My GP had said the blood I had seen in my poo was an internal haemorrhoid not a small, rectal tumour as my consultant had seen!

The gold standard treatment for bowel cancer is surgery which sometimes requires a stoma.  My tumour was so low in the rectum, I’d certainly have needed a permanent one. With my lifestyle of work, lots of travel, fitness, this just wasn’t acceptable, I was devastated.

My  consultant knew of the brilliant Professor Sun Myint and the Papillon treatment. Papillon is a type of brachytherapy, which provides contact radiotherapy directly to the tumour causing less damage to the surrounding tissue compared to external beam. A longwinded way of saying a large'ish tube is inserted up your backside and shoots beams directly onto your tumour.

 

 Ouch!!!! Ok slightly painful but needs must when it can save your life.

Six weeks later and copious amounts of phone calls, paperwork, second opinions, sleepless nights; found me at the Papillon Suite at the Clatterbridge Cancer Hospital, waiting anxiously for my first treatment.  I had previously followed a low fibre diet and was given an enema. I got undressed, hospital gown and a pair of enormous, unattractive paper pants with an ominously huge opening at the back!  In the theatre, the kind nurses gently put numbing and relaxing(!) cream round my anus.  A rectal applicator was inserted and placed over the tumour, then comes the treatment Xray tube which delivers the contact radiation onto the tumour. Oh yes, also a camera somehow as well,( whoever would have thought there was so much space) to check the exact position. Then the lovely nurse, who is holding your hand and talking to you about anything else than what is happening down below, and all the other staff disappear, leaving you alone while the radiographer beams the Xray onto the tumour.  It is all over in a matter of minutes, tubes taken out and breathe……

One thing, when you have it again, it is never so bad.  The anticipation of the unknown, the thought of a huge tube up your backside, cameras, radiation….you do it because you have to, it can be a life saver.  I had another treatment two weeks later, followed by 5 weeks of chemo and external beam radiotherapy.  That was a happy Christmas!  This is not always needed, but the Professor and my consultant regarded it as a ‘belt and braces’ situation, which I happily agreed to.

And no, I didn’t lose my long, blonde hair, which very vainly was my first question. Although one of the results of pelvic radiotherapy was similar to a Brazilian wax, so it wasn’t all bad! 

I had my final trip to the Wirral for my third Papillon treatment two weeks after my course of chemo and radiotherapy had finished. The tumour had completely disappeared, I hugged the Professor, literally my saviour! Still cry when I type these words.

Two years on there is no sign of recurrence.  Every three months I have an MRI, every six months CT, MRI, bloods, and a sigmoidoscopy.  I also visit the Professor twice a year, who is taking such good care of me.  I cannot thank him and my consultant enough.  Brilliant men.

If your tumour is small (less than 3 cms) early stage with no evidence of lymph node spread – you do have a choice.  Surgery is not the only option, only you’re not always told that, Lets spread the word and that word is PAPILLON.

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