This is a bit of a scratch the record moment. Please note I am just sharing my personal experience, to help reassure and inform others that might go through this and also for myself. It has nothing to do with dresses!
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 me 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
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!
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.
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.
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.
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.
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.
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.
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.
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
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 taken 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 just because it was different. It was a new place and I wasn't in the right headspace.
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.
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 the tiny tattoo 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.
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.
The first week was mentally hard as I was expecting to feel ill and was out of sorts. It was difficult to tell what was actual side effects and what was in my head as I was so hyper aware.
I went for a run this morning and was fine, I was just a little achy at the end which is unlike me.
Each week I have my blood taken, Olga the nurse on Monday was amazing!!!
So far so good.
Most importantly of all is how amazing all the staff at Bristol Oncology Centre were at taking care of me and everyone. The radiologists, nurses and receptionists were fantastic. If I squinted it was like going to a spa!
As for side-effects, I had brain fog from the capecitabine which got worse around week 4 but not terrible. I was just a bit sleepier and ditsier than usual. I had three incidents of extreme diarrhoea. Once about 2 1/2 weeks in for the Jubilee. I was in the garden and had severe stomach cramp, the next minute the contents of my body unloaded.
Then a week later and then the week after that. Always at the weekend.
I took 1/2 a loperamide after each incident and then things went back to normal. I had a few bowel movements a day but nothing unmanageable except those incidents. Which was great. I wore period pants every day I was scared of pooing myself.
As soon as I stopped the capecitabine my tummy was normal for me again.
I mainly felt tiredness, had blood and mucus in my poo (which is normal for me) and a slightly singed bum (I can't feel it).
And my blood is pretty much useless right now. I asked to see my blood results each week and it was interesting how slowly each week the chemo made it drop in White cells, Neutrophils and Lymphocytes. This just meant I couldn't fight infections very well and is why Chemo patients need to be really careful as a scratch could turn into sepsis.
My Haemoglobin dropped and then went back up before I finished treatment. My blood will hopefully recover after 6 weeks.
Am doing my pelvic floor exercises for life!
My vagina may shrink due to the radiotherapy so I was given these lovely pink Dilators to use a few times a week. I started using these during treatment as I felt OK inside and wanted to get going straight away. This again will be for life. So sweet of the NHS to not only save your life but offer self loving after care too!
I want to do everything (sensible) I can to limit the long term side effects so I feel in control as much as possible. I'll start running again next week and get myself as healthy as possible. I may also have menopause symptoms to deal with too.
Again mentally the past year creeps in. Late at night or when I phase out in a social situation I think of everything my body so unexpectedly went through. When I feel fine it all feels like a dream. When I see a gorey bit in a film it makes me turn away more than usual or leave the room. I have to put up barriers.
And my dreams, when I do get to sleep, are chaotic hospital dramas. I'm so glad to know they're not true but fighting the paranoia, health anxiety and worries will be part of life now.
My hospital (Weston General) were concerned about the recurrence and the need for more surgery as a belt and braces approach. As I had open surgery before, going back in is more tricky as my organs are stickier and the part to resect was in a fiddly place. They referred me to St Marks Bowel Hospital in London for a second opinion. Its very nice of them to do this. To double check my care.
St Marks came back with the options of watch and wait or a total removal of my rectum and bowel with a permanent stoma and barbie butt. It is all or nothing. This left us a little mentally freaked for a few weeks. I thought I wasn't sleeping due to early menopause but it was more likely stress. Or both!
I am very hopeful my clear rectum will allow me to avoid this major surgery for now. And I'm happy that if the cancer comes back I have an option.
I feel safe with Weston as I've said before but as things ramp up in the NHS clearing the backlog and with another covid winter ahead I can see the pressure building. I really hope they get all the support from the trust, the staff and government to keep doing an amazing job there.
I feel so disappointed every time I see visitor to the hospital without a mask, it seems like such a lack of respect to not keep your germs to yourself. We learnt so much these past two years surely we can hold onto that knowledge?
I'll never say all clear as this spectre will be with me for life but every expanse of a few weeks is positive. I'm back running, I have early menopause symptoms but generally feel good. My bowels behave.
Now I really want to get back to my work and dresses.
Due to the 25 zaps of pelvic radiotherapy and chemo it was expected that my ovaries would shut down and I would go into an early menopause.
I really oddly thought that menopause was something that happened to other people, to middle aged ladies that I somehow would never become?
My Mum can't recount any menopause symptoms, but this is the lady who dealt with 7 years of chemo by opening the car door, puking and driving on. And the chemo probably took all the attention symptoms wise.
My symptoms so far aren't too awful and can mainly be explained away.
I have a hot flush which is really just like blushing a bit hard. The sleeplessness I think is linked to anxiety and hot weather. Through the hot nights I slept with ice packs, cold flannels and tried nytol herbal and nytol normal and went for a run during the day.
The nytol didn't really help and left me groggy the next day. The ice packs and flannels were ok.
The run, getting a sweat on, helped. And the drop in weather temperature, wearing socks over my twitching feet and seeing my clear scan have had me sleeping well again.
Other symptoms like palpitations I let come and go. My brain is a mess anyway, it felt a little different (like anxiety +++) but as I said, I was also very anxious about surgery.
The other symptoms, headaches and muscle aches not really, UTI's and vaginal dryness I think are avoided due to me already mitigating radiotherapy side effects by drinking a lot of water and using my dilators and lubricants every day. And again dry skin, I oil my body day and night with Aveeno and coconut oil.
Weight gain, yes but its been my birthday and summer, I've been eating some feelings and not sleeping well makes you really hungry. I just need to be a little more careful on the calories.
I was terrified about loosing my waist and just have to remember women over 50 do still have waists if they want to.
I had a telephone appointment with my GP and he wrote a prescription for HRT Oestrogen gel and Progesterone tablets.
Before starting I had a blood test to check my hormone levels. I have double checked with my CNS nurse at the hospital too that all is definitely 99% safe. My Mum had breast cancer and did not take HRT.
Looking at the facts and data, this is no more risky than the pill and will protect my heart from disease and my bones from osteoporosis which is more dangerous and why I personally should take the HRT. I am physically healthy, don't drink, don't smoke, exercise regularly and have low blood pressure. I am also being monitored and scanned for life so anything untoward will be picked up. Despite me writing this I was hesitant.
My bloods came back with a score of 124, anything over 30 is you're officially in menopause. I had an amazing GP who brought me in straight away and just let me ramble a bit. She explained that I have to take the HRT, there is no choice for early menopause. And that I also needed some counselling. And that my neck was fine.
The HRT worked almost instantly. I have recently upped my dose a little more as I definitely feel like I'm 120 and that seems to be relieving things. I am also having counselling through Macmillan to help me cope a bit better with the anxiety. I can go from fine to the end of the world in a split second, they say menopause is a reverse puberty and I am being one hell of a stropy teenager again!