I’ve just come home after 5 nights in hospital. I was dreading taking the prep – basically really strong laxatives to clear your system out, but actually it wasn’t as bad as the stuff I had to take prior to the Colonoscopy- it was called Piccolax and whilst it did the job, it didn’t make me feel as exhausted and nauseous as the other stuff.
We had to leave at 6:20am to be there for a 7am check in. I woke up at 5:30 anyway to take the pre-op drink they give you to help strengthen your gut. The journey in was pretty tense, but OK- Nick kept me distracted by talking about the various merits or lack of merits of the Love Island Contestants – yes we did end up watching the whole series and the reunion! I don’t like the episodes when everyone is arguing but generally do find it a great way to unwind and let your brain have some down time.
When we got to the hospital, we went straight up to the ward and checked in – I brought a suitcase full of everything I could think I might possibly need, plus my favourite pillow and blanket. The staff had said to bring stuff that would make me feel more at home. I got everything as ready as I could do and I put off putting on the hospital gown for as long as I could as it’s then that it really becomes real.
The Surgeon came to speak to me at about 8:30 and I signed the consent form- I agreed to having my left ovary out as well as the bowel resection should they deem it necessary due to the cyst that appeared to be located very close to the tumour.
Then it was a case of just waiting to be called down. The journey from the ward to the theatre will always be something I’ll remember- such a strange feeling. Being wheeled along in your bed and obviously just hoping for the best outcome. Saying goodbye to Nick and going into the pre-op room to be anaesthetised.
I had put on some numbing cream on my hand where they would put the cannula – in the scheme of things of course a cannula is nothing, but I really dislike needles, and was glad when they put it in, I hardly felt it. Within 5 minutes I was out. I think I maybe counted to 4 before I was out.
It’s such a strange feeling coming around from General Anaesthetic – like suddenly your brain is turned on again and it doesn’t register that time has passed. I was in quite a lot of pain- it basically felt like my insides had been stirred up. I had to wait a while to get some stronger painkillers- I assume they were checking it wasn’t a post-surgery problem and was just the ‘normal’ reaction to surgery. It felt like ages, but finally the pain was massively reduced and I was taken back up to the ward to recover. I don’t really remember the journey back up as I was still barely with it, I just remember being so thankful it was done, and I vaguely remember the surgeon saying ‘all went well’ whilst I was just coming around. I didn’t know details, but I was just extremely grateful and happy to be out of the recovery room and back on the in my room. I noticed that my belly was very swollen and it looked similar to being about 6 months pregnant.
Soon after this the surgeon came back and was able to tell me that she had successfully removed the tumour along with a foot of colon, they hadn’t needed to take out my left ovary as well, and they had drained the cyst that was right next to the tumour- it hadn’t appeared to be anything connected with the tumour, though it seemed strange it was so close to it.
It was all done laparoscopically so all I had was one main cut next to my belly button and 4 smaller cuts further to the side of my tummy. They had taken a foot of colon out of a hole that can’t have been bigger than 2 inches. I was just amazed and so happy that they hadn’t needed to fully open up. This was the best result we could have hoped for.
The first couple of days were the hardest- living from each dose of painkillers and waiting for the next one. Eating a small amount of jelly and yoghurt – and eating VERY slowly as my poor tummy was wondering what on earth was going on. There is a risk of having a frozen gut where it completely stops responding and you have to have a feeding tube put down through your nose, so I was taking things really slowly. I also was taking probiotics to help restore those into my gut after the op.
Nick my husband came to visit as soon as I messaged to say I had come around – it was so good to see him and he stayed until quite late and I was drifting off to sleep again. He is my rock – he always has been and he has this amazing calming energy, so it really helped me to see him.
The next few days are a bit of a blur- there were times when I felt really ill- I think partly due to the strong drugs I was on and partly due to my gut recovering. I was able to eat just a little bit each meal – the hospital food was surprisingly nice and the staff were so helpful and lovely, I felt so well cared for.
Since the beginning I had specified that I really wanted to be able to see this thing that was causing all of this. The surgeons took photos of the surgery (I think they do anyway for their own records) but it was fascinating to see photos of my womb, ovary, liver, gut and everything. The actual tumour I still haven’t properly seen as being on the inside of my colon, the photos were taken from the outside- you can see a swelling, but not the actual thing (which is good obviously!) But I’m still following up with the doctor who did the Colonoscopy to see if I can see a photo she took of it. I don’t know why but I just really want to see this thing!
My son Leo is 4 so a lot of this has gone over his head- we thought it would be good for him to understand more by coming into hospital and understanding where I’d been whilst he’d be staying with his grandparents. It was great to see him, though it also took all my energy as he had a lot of questions and updates to share- at that point even talking felt like heavy exercise! See below for some pics of his visit. 💜 💜 💜
After 5 nights in hospital, my bloods had showed what the nurses said was a ‘remarkable’ recovery rate with the inflammation and stress markers going down quickly after the surgery. I was always good with taking vitamins and generally having a healthy lifestyle, so perhaps that played a part. I had also managed to go to the loo, which you need to have done before they will discharge you- luckily this happened just before they were about to prescribe me a bunch of laxative suppositories! So it was time to head home. I was just starting to get cabin fever having not seen anything but the same 4 walls for more than 5 days!
I was nervous about the journey home- it was a 35-minute drive- I just wished I could teleport to my bed at home. Nick wheeled me down in a wheelchair to the car and I had a thick pillow over my lap so the seat belt didn’t dig into my very fragile tummy area where the scars were healing. It was just at the end of the recent heat wave but it was still really hot and muggy, so as soon as I could I whacked the car AC onto max. It felt strange to be ‘allowed’ out into the world still feeling so fragile, but as soon as I got home I was so glad to be there. Suddenly the whole hospital experience felt a world away and very surreal.
I’ve now been home for 3 nights and I’m generally feeling just a little better each day- I’m still on a lot of painkillers and anti-sickness drugs, but when I time them well, they just about make things manageable for me to alternate between my bed and the sofa and I’m able to potter around the garden and do a bit of grounding- I love walking bare foot on the grass!
We are due to go back to hospital to get the results of the analysis of the tumour and surrounding lymph nodes hopefully later this week or early next week. From there we’ll know if they recommend chemotherapy if the bad cells did make it over into lymph nodes, or if not I’ll be put on surveillance with regular checkups and scans. I’m trying to psych myself up to be ready for either result, and hoping that Trevor the tumour didn’t manage to spread his bad vibes any further… I’ll update when I know more.
My main reason for sharing my story is to raise awareness- I know that unfortunately there will be other younger women like me who end up having this disease- it’s really treatable if we catch it early. If you’re in the UK, you can buy a test for about £30 with this discount code here – use code
It can be symptomless for a while, or you may notice some of the symptoms below. I dismissed mine as you know- as women blood coming out when going to the loo isn’t that unusual, and I thought my pain was a period-related thing. Since I also had a cyst it could have been that too. Overall for me it was consistent tiredness and just feeling that something wasn’t quite right. When I went for a run, I’d get a weird pain in one particular spot and that didn’t feel right.
Note- you can get a positive test and not have bowel cancer but then you should be referred to a colorectal specialist who can further support and advise on next steps.
If you’re able to contribute to my fund to help cover the extra costs and the fact I’m not able to work, I so appreciate any amount you can offer.