November 9th 2021 – Today is our first meeting with Dr Stewart at St Lukes Cancer Centre at the Royal Surrey Hospital in Guildford, Surrey.
Full of trepidation, me and Denise wait in the waiting room.
A nurse gives me a tube and smiles, I look down, it's an enema.
I go into the loo and do the necessary.
I come back and we are ushered into an examination room.
After a few minutes Dr Stewart arrives and introduces herself.
She asks me loads of questions about my medical history and family medical history going back to the year dot.
Finally it's examination time!
I go behind the screen and it's trousers off.
Dr Stewart puts her gloves on and the examination starts...
Examination finished, trousers back on.
Dr Stewart pulls up a chair.
"You are an ideal candidate for the Papillon Treatment" she says.
YES! This is what the doctor ordered!
Wonderful positive words! Finally, light at the end of this horrible tunnel!
She says at least 80% chance of recovery! That’s more like it!
Denise is smiling for the first time in a long time!
I'm smiling too. I cant wipe it off my face!
"We can start your treatment this afternoon at 3.00"
Bring it on!
At 2.30 We are in the corridor and I'm handed a clothes basket with a gown and some tubes in it. There is also a pair of loose black shorts with a big slit where your arse is. The tubes are my choice enema of the day! I'm shown to the changing room, do the neccessary and change into my new outfit. Five minutes before take off, the enema kicks in and we're off!
3.00 – Into the Papillon room I go. I see the Papillon Machine with a Star Wars Lightsaber
attached to it. A nurse introduces me to what looks like a massage table, you know, the one where you're laying face down and your face is pushed into a hole. Knees up, I am now in the mooning position. I'm completely at the mercy of Dr Stewart who is at the business end. The Lightsaber is inside me. The warning siren comes on. Everyone rushes out of the room and another siren comes on while my arse is being zapped and pounded by electrons! 20 seconds later the siren stops and the doors open, everyone comes back in. The show is over, time to get this thing out of me and put my trousers back on.
November 26th - St Lukes - Second zapping on the Papillon, much like the first!
I'd just like to mention here that the Papillon Brachytherapy Machine in use at St. Lukes at The Royal Surrey was paid for by Bright CancerCare based at the hospital.
December 10th - St. Lukes - Third and final zapping!
Alex invites Denise back in the zapping room and she is smiling.
"The pics look good! Your tumour has shrunk more than we thought it would, we are really pleased with your progress."
Alex Stewart is really happy with the result! And so are we! Big time! We are overjoyed!
It's not all good news though, I ask if thats it then? has it gone completely?
Unfortunately because the MRI and CT suggest there may be something occurring in my Lymph nodes (and who am I to argue with Dr. Stewart!) she wants me to do 5 rounds (weeks) of chemo and radiotherapy, starting in January, locally at Elstree
I can hardly wait...!
(If anyone wants to see the pics of the tumour taken before each zapping, PM me on FB.)
December 29 – CT Scan at Spire Bushey. This is set the targeted radiotherapy treatment up. Because it is targeted it lessens the damage done to the surrounding area.
January 11th 2022 – Start of 5 weeks (5 rounds) - Monday to Friday - of Chemo tablets and targeted Radiotherapy every day at 10.30 at Elstree Cancer Centre in Borehamwood. (Genesiscare).
I had to take Capecitabine 1600mg (six tablets) twice a day, 12 hours 
apart, 1-2 hours before radiotherapy. I was given an industrial pack of Lopermide 2mg capsules in case of diarrhoea, and big box of Domperione 10mg tablets in case of sickness.
My advice would be to buy a big pot of E45 cream too!
You'll thank me for it!
So I take the first dose of chemo the night before my first radiotherapy session. I take two 500mg pills - Huge! - and four 150mg pills! and I'm worrying about what the side effects are going to be.
I wake up the next morning, and I feel fine. No side effects at all. In fact I feel great!
This is weird!
I've been told that I must have a full bladder for the radiotherapy every day, the radiologist will do an ultrasound before to check. If its not full, they'll send me back to the waiting area until it is!
This will be interesting! A full bladder! With my prostate!
Elstree Cancer Centre is just over three miles from our house. I've got to try to reach a balance between keeping my bladder full and pissing myself every day for the next five weeks.
This is not going to be a walk in the park!
I go to the loo as the cab draws up outside at 10.00.
Adrenaline is also kicking in now on top of everything else.
I get in the cab with my 2 litre drink bottle and off we go to my first radiotherapy session.
Halfway there and I need to go to the loo already. I hold it in.
We pull up outside and I rush in. I'm busting!
No time for niceties "Where is the loo!"
The receptionist points and I rush in and do half a wee, (not easy) as I can't go in with an empty bladder! This is a very delicate balance!
I now drink another half pint of water.
Luckily enough there are copius amounts of toileting facilites in the waiting room as well as a couple of changing rooms.
I get called in at 10.30, I get changed and get into position on the big machine.
The nice radiologist gives me a going over with the ultrasound probe and I get the thumbs up. I'm not surprised as I want to run to the loo again!
Once on the machine, the staff run for cover in another room and it bursts into life doing a 360 degree cycle to check my position, then another cycle firing X-rays at my tumour.
It all takes less than 10 minutes.
I get off the machine, get dressed, wave goodbye and say see you tomorrow. I cant get to the loo fast enough!.
This is my daily routine for the next five weeks!
I get into my cab and go home.
That wasnt too bad!
No side effects whatsover!
Lets do it again tomorrow!
Around a week after starting the treatment I start getting overwhelming feelings of tiredness. I cant control it and have to go to bed at 2 in the afternoon, waking up around 6. This is the new way, it carries on until the end of the treatment.
I like to play guitar, I'm not that good, but I enjoy it, and I find it relaxing.
My fingers are hurting when I touch the fretboard.
My fingers are red raw and dry.
Out comes the E45 cream, I cover my hands in it, every hour.
The guitar gets a holiday, it's impossible to play.
After two weeks of radiotherapy and chemo I was thinking I dont know what fuss is all about! This is easy peasy! If this is the worst of radiotherapy and chemo, then this is a doddle!
It wasn't.
I had intended to log every day of my chemo and radio 'journey'. Did I?
No I didn't. I was just too tired most of the time, and when I wasnt tired I was either working or having radiotherapy. It all became a bit of a blur.
But I can tell you that around week three,during the night I started waking up to pee more or less every two hours and when I did it was a tiny trickle. I'd go back to sleep, and two hours later, same again. Bare in mind I'm drinking constantly because of the radiotherapy.
Another week went by, and I'm having real trouble peeing now, it takes ages to start, it also hurts when I do.
On top of this, the radio therapy is making me incontinent!
If I get the feeling that I have to go, I have about 30 seconds notice before I have to sit down on the loo and get the job done. Our toilet has become the centre of my universe. I was getting through a box of Loperadine capsules a day!
Because of the position of my tumour, quite close in proximity to my prostate, the radiotherapy was cooking* the bloody thing, as if I needed any more problems.
I now had a massively enlarged prostate and I was really having trouble peeing anything.
Alex, my oncologist knew what to do, she immediately put me on Tamsulosin. One capsule a day sorted that out. Phew, one problem sorted.
*Cooking - my term - I dont know what the correct medical term is, but that's what it felt like.
I've had piles in the past, who hasnt?
By the last week of radiotherapy, my past piles were ecstasy. A pleasure.
What I had now felt like a red hot bunch of grapes hanging down from my arsehole.
Incredibly painfull.
Remenber earlier I mentioned E45 cream, this is only stuff to go near it.
It helped, not completely, but it got me through it!
I'm now nearly finished five rounds (as they say in the trade) or weeks (five days - weekend off) of radiptherapy and chemo. The end is near!
6th February - My sister has been rushed to hospital with cramps, she cant keep food down.
February 14th 2022 - My final day of Chemo and Radiotherapy! The nightmare isnt over yet, the horrible side effects remain for another two weeks before things slowly return to normal.
18th February - My sister is discharged from hospital. She's really not well. She has no appetite, my nephew is looking after her.
March 6th - Briefly spoke to my sister - but she's incoherant
March 8th - My sister is going into a hospice.
March 11th - My sister Lydia died of Cancer. I am in complete shock.
April 7th – Sigmoidoscopy, MRI and CT at Nuffield Health, Guildford. All good.
April 15th – Got the All Clear from Alex Stewart! Yay!
July 28th - Colonoscopy & MRI at Nuffield Health, Guildford. All good.
November 3rd - MRI & CT Scan at Nuffield Health, Guildford. All good.
December 15th - Sigmoidoscopy at Nuffield Health, Guildford. All good.
At the time of writing this I have had MRI's, CT scans, Colonoscopies and Sigmoidoscopies galore!
Nothing new is growing inside me, as far as I know!
Thank you Denise for helping me get through this. I dont know what I'd have done without you.
Thanks to my kids, and my grandkids!
And Thank you to Mark Davies who wrote 'Saving My Arse' and helped to save my arse and to Dr Alex Stewart at St Lukes, who did!
My story is a salutory lesson for all who get an early cancer diagnosis. You must do thorough research before committing to surgery if you have a tumour in your anus.
I hope by telling my story I can help someone else dealing with Low Rectal Cancer.
I've started a Facebook group called Saving My Arse for anyone that needs help or information or just have a chat or want to contact me.
Join the discussion
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
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