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Cancer Part 2 - The Return

fuck cancer banner

 

This is a bit of a scratch the record moment.  

April 2022

My bowel cancer has returned, I have a local recurrence of invasive adenocarcinoma in my rectum where I haven't healed properly after my initial surgery. I'll be treated with a combination of both Chemo and Radiotherapy at the same time to kill it, then some more surgery. 
This is why I am monitored and checked. 

Keeping a diary here of what's happening is mainly for myself as it really helps to get this stuff out of my head and deal with it. 
My first thought was that I'd failed. That I hadn't looked after my body enough and it came back because I ate a pizza! My logical head knows this isn't true but its how it feels. Like I failed an exam because I didn't try hard enough. 

My F**K Cancer banner was made for my by a wonderful friend, thank you! 

My previous post about bowel cancer is here. 

First and most importantly ... 

Bowel Cancer Symptoms 

- Blood in or on your poo - take a look!
- A persistent change in bowel habits - know your normal. This change can be diarrhoea or constipation
- Pain or lump in your tummy - I had some sharp indigestion pains
- unexplained weight loss
- persistent bloating and uncomfortableness
- extreme tiredness for no reason

If you see blood in your poo get the the DRs to check straight away.

Resources and support 

Bowel Cancer UK
Macmillan
Blood in Stools NHS
Girl Vs Cancer 
You me and the Big C Podcast
Cancer Research 
Bowel Babe


Jan 2022 How it Started (again) (cancer is so boring!) ....

I'd started feeling a bit extra full after Christmas, as most people do. I'd probably indulged a little, but was still being pretty careful as my stoma reversal surgery had only been at the end of October. 

There was a definite prolonged change in bowel habits after Christmas, things slowed down a lot which all seemed normal and then I noticed what looked like a little dark blood and mucus on my poo. I told myself I was overreacting and needed to move on.  I had been obsessively checking and thought a lot was in my head. I was really struggling with life after the shock of cancer. 
Everything had changed, I had changed and I didn't want to do anything that might bring it back. There was a constant spectre. 

My bloods in December were 1, I was all clear. I had been told after the removal of the tumour that it was stage 2 with no spread, no margins, no lymph nodes, no nothing, It was self contained and gone. I was cured. Move on and enjoy your life!

I called my nurse specialist at the hospital in February and she said it all sounded normal but she'd have a word with my consultant to double check about the blood. He said he'd like to check how everything had healed and booked me in for a sigmoidoscopy, but there was nothing to worry about. 

The sigmoidoscopy went well, I pooed in my slippers and then on the floor after my enema. Which made my laugh because what can you do when you can't hold onto your enema for 10 mins! 


bowel cancer under 50


Here I am again, trying so hard to hold onto my enema. I was trying to distract myself with my phone. One second later .....

After cleaning myself up, I had the camera in my bum and there on screen was a little scab around my join in my bowel, at the anastomosis. And some staples which looked like miniature ship wrecks. 
In my mind the logical diagnosis was that I'd been a little constipated and one of the staples had been knocked and a scab made which was bleeding. I almost put the words into the consultants mouth. Everything else was squeaky clean but a little inflamed from the constipation, 

They took some biopsies as normal and I went away happy that I just needed a little help to get things moving. I had a diet of lots of fruit and veg and so much water and blamed Pizza and camembert for clogging me up! 

The results came back all clear ......

And then I had a call

I was speaking to a friend and saw the 'no caller id' flash up on my phone. If you have cancer you always pick up that call. It was my nurse specialist explaining how sorry she was that my name was on the MDT list. My first biopsies had come back clear but a second lot had come back suspicious. 

I was called in to see my consultant and the worst went through my head.  Everyone was a bit rattled. I was a good news story of catching bowel cancer early and being cured. I so didn't want to disappoint the wonderful hospital team!

Mr.C explained that things looked suspicious, they would run lots of scans and I would most likely need to have some treatment. This just sometimes happens.

There was another sigmoidoscopy with biopsies. I didn't poo in my slippers this time, little wins ;)  The scab looked far more healed this time which I thought was great. Maybe it was just healing cells?

Biopsies came back very suspicious again. I was then scanned, MRI, CT and PET scan which was cool being radioactive for a day. A neck ultrasound, bloods and another MRI. 

bowel cancer under 50

 

The PET scan is so cool as you can scroll through the inside of your body. The bright dots (on the right image)  are my bladder (all ok) and at the bottom the tumour. So tiny yet so horrible.

I then met Tom the oncologist. After discussing in the MDT (multi disciplinary team) meeting of consultants, Drs, specialists, oncologists, radiographers, pathologists, nurses etc. with all the evidence they had, it was concluded that this was invasive cancer recurrence and I needed Chemo and Radiotherapy. 

Many people have asked about a second opinion. I have of course asked a million times 'are you sure? I feel super healthy'  I had 50 second opinions, that's how the NHS works and I am so incredibly grateful of this.

My husband and I had 24 hours to decide if we wanted to make and freeze embryos. This put my privilege of never wanting children into perspective and though we thought it over, it was a no.
We couldn't take the space of someone who had always wanted children and I wanted to start treatment as quickly as possible.

This will be one of the most awful parts of cancer diagnosis for people under 50 and it was good to know there was lots of support.
Olivia's Got Guts has shared her story of bowel cancer, treatment, fertility and surrogacy. 
This is an incredibly important decision to make, the NHS offer egg, sperm and embryo freezing for cancer patients.

So, I will also have an early medical menopause as the radiotherapy to my pelvis will make me infertile. Yay no more periods! - really trying to find the positives. 

I'm going to be out of work for a bit, mainly as I'll be driving to my Radiotherapy every day for 5 weeks.

bowel cancer under 40

We ran away for the weekend after the news to a spa in Cornwall and had the best time. For so long I felt guilty if I took a holiday from work, now is the time to enjoy my life a bit more.


My Radiotherapy Planning Scan

Walking into the oncology centre in Bristol for my planning scan was hard. I went on my own and couldn't help feeling it was all wrong. I'd been for a run that morning and had put on weight. I can't be ill. I feel too good. 

I sat in the waiting room, it was all people over 65 and then a child came through. I stopped feeling sorry for myself. 

There's a process of downing a bottle of water to fill your bladder, then telling reception and then getting your radiotherapy timed when your bladder is fullest to push your intestines out of the way of the rays. I then will lie on the bed, naked from the waist down and they will blast this f****r away daily. 

bowel cancer under 40
The CT scanning machine for planning my radiotherapy.

I have three new tattoos too. One dot of each hip and one in the middle just above my pubes to line up the machine. We thought it would have been funnier if they gave you miniature dolphins.

I'm going to keep a diary and share how it all goes from here. My life is far more than cancer, its dresses, but if this helps just one person get an early diagnosis, feel less embarrassed and get rid of the arsehole that is cancer, then its worth it. 

Talking of embarrassing. My cancer is bowel cancer, right down in my rectum. Rectal cancer. I'm saying it out loud and I'm proud to be beating it.

May 2022

Currently typing this after taking Moviprep for my colonoscopy tomorrow. Something showed up on my PET scan and it'll be good to check the whole bowel.
For the record Moviprep is like drinking 2 litres of cheap orange squash flavoured spunk. Picolax is way easier.

moviprep

This tastes so gross but I did wonder if presented to me as a cocktail I'd be saying how nice it was? At least it was pretty gentle. No tummy cramps.
The colonoscopy went well. Lovely and dreamy. The polyp that showed up on a scan couldn't be found and my large bowel was looking good and healthy except for the little elephant in my rectum. 

Little note to self - I have a severe vein phobia. I'd been good the past year on dog stories to distract me. I thought I was ok with another story but its dogs or nothing. Yesterday I passed out cold in the bed after wretching at the words 'I thought I had this in a vein'. I need needle ninjas who have seen a dog before or my brain literally says no, we best die now and drops my blood pressure to 64.
We got there in the end, the poor nurse. 

bowel cancer uk under 40

My tumour photos from 3 scopes. It looks so insignificant. 

May 11th - Bowel Babe

Went for a run this morning and saw Bowel Babe Deborah James on the News. 
What a hero, inspiration, etc. there aren't really words for how grateful I am to her. My cancer is curable because of her and I get to live. I wish we could swap cancers, its completely unfair. She has, is and will continue saving so many lives, raising awareness of bowel cancer and showing us how to have hope whilst being really smart about cancer. She took the terrifying out of it and showed me how to live. 
All through my treatment 'Bowel Babe' has been mentioned. By nurses, doctors, in hospitals and hopefully GP surgeries so everyone knows you can have bowel cancer under 50. You can never be too young.
As Deborah says goodbye I am unbelievably grateful of everything she has done. Thank you Dame Deborah!
Go donate to the Cancer Research bowel babe fund here to beat bowel cancer
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Friday May the 13th - Pre Treatment nerves

I thought I was starting Chemo today. It was fitting to be Friday the 13th. My nerves were all over the place, I went for an anxious run in the morning and we drove up to Bristol ready to get this done.

It didn't start well, for the first time I didn't have a letter telling me what to expect and where to go. Just a one line email saying Oral Chemo Appointment Level 4.

So after meeting the very lovely nurse who gave me my capecitabine tablets and explained everything to me, I had bloods done by wonderful nurses who used a butterfly needle and showed me their pet photos. We then went home and I had a complete meltdown. 

I have been so spoilt with Weston Hospital. Its a big airy, beautifully designed hospital with good ceiling heights, light, windows, koi carp, individual rooms for bloods, individual rooms for colonoscopy's, empty waiting rooms and most importantly of all excellent communication. Plus an excellent colorectal team.

Everything is in writing, for every appointment there is a chirpy receptionist and a letter saying where to go, what time, what to expect, what to do. What has been said is then typed up and sent to me and my Dr so at all times I know where I'm at. Because absolutely nothing is going in my brain in real time!

I had a meltdown about Bristol not having in writing a personal treatment plan, waiting for my blood results and not being able to get hold of the nurse on Friday afternoon. I think I may have had a meltdown because it was new and different. Maybe because I'm scared of the treatment side effects and wish none of this was happening. 
The poor nurse did call, I cried at her saying 'its not like Weston!!!!! ' she works till 6pm and she did say sorry. 

I cried all night and most of the morning wondering why I should even start treatment. I'm allowed a little meltdown, lets call it rehearsal nerves.
The staff at Bristol will be wonderful, I start Monday.
Monday 16th May
After my weekend meltdown I was ready to start. Two crumpets with peanut better and my Capecitabine pills in a paper cup. 2 big and 2 small. Loperamide and Anti Sickness on standby. I'm trying not to touch them or let them stay in my mouth for more than a second so wash them down quick with lots of water.

I expected some kind of reaction. Something. There was a little flush of metallic taste in my mouth and then it was gone. 
Thankfully no nausea, I ran to the loo a few times but that could have been nerves. 
So up to Bristol for my first Radiotherapy blast. I arrived, drank my water, had a chat with a radiotherapy nurse and changed into my gowns. Naked from the waist down. 
I lay on the bed, the lovely radiologists (two women and a man) lifted my gown, placed a modesty sheet over me and marked up my dots on my hips. They made sure I was in exactly the right position, pulled my gown back down and left me with the machines. 
The machines are incredible. There's one delivering the radiotherapy through a metal plate with a cut out shaped to my tumour inside. I can see this ghostly shape in the machine, its really cool. Then there is an X-ray I think taking images and two plates to bounce the rays off. All 4 swirl around me. I'll try and take a photo at some point. 
My main concern from the day was, why can't I wear tiny pants? I can make a pair that don't pull the skin or cover the dots. And why can't I just wear a smock dress and pull it up?
I asked this and they need you EXACTLY as you were on your planning scan. Plus I'm guessing its not fair if I get to wear a dress and pants everyone else has to get their buts out because they can't make a dress. 
I did learn to dress economically so I can change into my gown fast. Maybe I can make my own gown at some point? 

I came home, felt fine and took my next set of Capecitabine after dinner. 
The side effects will get worse as time goes on but for now I am very grateful to be feeling nothing. 
The following morning, I went for a run, took my pills and drove myself to radiotherapy. Feeling very lucky. I hope it stays this boring.