A friend recommended Mr Daren Francis – a general and bowel surgeon. I needed more opinions, and fast, the longer you leave it, the worse it gets. We saw him at Bushey Diagnostic Centre. He said he could help, but I was in for a bumpy ride.
And the next week I had an Endoscopy with David Burling and a meeting with Dr ***** ******, an Oncologist at Harley Street. He recommended that I go ahead with stoma surgery! WTF! But also said a cocktail of chemo and radiotherapy might shrink the tumour. He wanted a better, HD MRI. He would organise it.
I asked him about Papillion, which he seemed to know about, but said it was unlikely as I had possible adjacent lymph node.
While all this is going on, I've still got the surgery booked for the Permanent Stoma, and my mind is doing somersaults, sometimes coming to terms to what I think is inevitable and then the complete opposite!
As a result of reading the Macmillan book, and many google searches, I had found Mark Davies's brilliant book 'Saving My Arse' and read it over two days! (see the link on this page to buy a copy! its a great (and informative read) I emailed him, to see if he could help.
October 6th AM Ultrasound at Harley Street
October 6th PM – We saw the Stoma nurse at St Albans Hospital.
It was pretty grim – Denise couldn’t hide her distress – she was horrified.
The nurse there gave me what can only be described as Stoma Care 'Welcome Pack', contain lots of leaflets and information, sample colostomy bags and a plastic stick-on stoma, that I could stick on my abdomen, so that I would recognise it when I wake up and see it after the operation.
The nurse explained to me that after the operation it would take a while before my body adjusted to it, I would not have any control of it, but I would learn to live with it.
This was a hobby that I really could do without, but would take over my life. I'd be worrying about it 24/7.
I wasnt ready for this major lifestyle change.
This meeting just nailed it home to me, I really dont want this operation. If there is another way, I will take it.
This is my wife Denise's thoughts on the meeting:
It was Wednesday 6th October 2021. Steve's radical operation to remove a large part of his lower bowel was scheduled for 14th October.
We were trying to come to terms with this and were both still in shock from the discovery of the tumour following an initial routine screening.
The Stoma nurse was a nice lady and did her best to.persuade Steve that it wasn't such a big deal and he would get used to.it!!
Then came the part I'll never forget! She produced a nice shiny box containing a practice bag which would mimic the action of a real one! She recommended Steve practise putting it on every day to get used to.it!
When I saw her fiddling about with it and showing Steve how it would work, I started to cry. It was so crude looking and it just brought home to me what life would be like for my husband. I felt like screaming!
Fortunately there was an alternative treatment which, although unpleasant, has avoided this operation with the resultant life changing "equipment'!.
What a absolute nightmare that was!
October 11th - Denise and I are walking around the Borehamwood Reservoir with our Shnauzer Bella, trying to take our minds off things, when my mobile goes off.
It's Mark Davies!
"No time to lose! There is a hospital not a million miles away from you that can help you. It's the Royal Surrey in Guildford, you need to speak to the oncologist there, Dr. Alex Stewart, here are her details! Make an appointment, Now!".
I thank Mark, sit down on a log, and try and pull my thoughts together. My phone rings again, 'PRIVATE NUMBER'.
It's my surgeon, Najibullah Daulatzai at Watford NHS wanting to know why I havent attended my Covid Test prior to surgery next week.
I ask him to postpone my operation for October 14th as I am still considering my options. I ask him for referral to see Dr Stewart at St Lukes at The Royal Surrey. After much explaining about the Papillon treatment he agrees to give me a referal. I have to phone his secretary and give her all the details.
Phew! What a day its been!
October 20th I had a HD MRI at London Radiology which put the size of the tumour at 2.3 cm and as a T1 not a T2 as in Watford’s MRI.
October 22nd another meeting with Dr ******* in Harley Street. He's looked at the latest MRI and there seems to be no lymph node. He wants to put me on five weeks of radiotherapy every day for 20 minutes and low dose chemo tablets at the London Cancer Centre near Harley Street. When I ask him what chance this has of killing the tumour, he says 20%.
I'm not impressed, I've made my mind up, we both agree, I won’t be seeing him again!
Surely if there is no lymph node then Papillon is a good bet.
I ask him for a private referal for Dr Stewart, just in case the NHS one is delayed.
He agrees to do it.
DONT Just accept what a Doctor tells you.
Look for CHOICES!
From the Daily Mail: The Bowel Cancer Operation that means you DON'T need a Colostomy Bag
Your Relevent Link here - get in touch.
SavingMyArse.co.uk
is powered by
