Hi all.. I just wanted to try and give some reassurance if possible to those out there going through colorectal cancer. At the start of my journey I kept coming here just to read and find out information and other peoples experiences and it helped get me through so I hope I can do the same for someone else.
Background - I am a very fit and healthy 35 year old woman with two children. I have always lived and maintained a healthy lifestyle, exercise, non-smoker, rarely drink, well educated on ultra processed foods, what goes into our bodies etc and I also have absolutely no history of cancer in my family. So to find out I had stage 3 cancer was the shock of my life as I felt I always did the ‘right’ things to avoid such health problems!!! And I always thought if it did happen I’d be a lot older.
I found it sad to hear from the nurses that bowel cancer rates for younger age groups are rising quickly.
I feel as though I just woke up one day with every symptom and no warning sign. I had a colonoscopy and could clearly see the tumour. I had a brilliant consultant who was honest with me that day and said she could tell by looking at it this was cancer. The next week was full of MRI/CT/Bloods/talking to cancer nurses etc. unfortunately the following week was Christmas which was probably the toughest time as we had no clear answers other than knowing it was cancer and no-one to talk to. That week all I could think was, will I die? I was trying to give my children a good Christmas but also sobbing as I cooked. I can say that waiting is 100% one of the hardest parts and can make you feel like you’re going crazy.
Having young children and cancer is very hard but it also helps keep you in routine and a reason to get up in the morning when you feel low. So even though there are some super hard days where parenting feels really difficult, children help keep things normal and in a way get you through. I feel like I kept going for them.
They initially thought stage 1 but due to the size of the tumour being a few cm it couldn’t come out via colonoscopy and had to be a bowel resection. I cried a lot when my children and husband left before I went in for surgery. But the kindness and compassion of everyone - consultants, nurses and even the tea man was incredible. There are some amazing people out there who are meant to do these jobs!!
Surgery was 8 hours, the first few days were hard but getting up and moving was the best thing to do. I am glad to say I had great care in the hospital.
After the op they said it has actually gone further than they thought to the bowel wall, they tested the tumour and surrounding tissues and found it in a lymph node so this made the official diagnose stage 3 (T3N1). Because of my age I was advised 4 rounds of IV chemo and tablets (Xelox). This scared me more than the operation.
Chemo wasn’t easy and I suffered with nausea very badly. But on day 4 of the first round I called and said I can’t cope and I had a brilliant lady who put me straight onto stronger nausea meds and this changed everything for me. I felt like I could function again. So please do not suffer, if you can’t cope tell them. It made each cycle more tolerable. The neuropathy was not fun. Make sure you have multiple pairs of gloves, a snood and for the IV I took a hot water bottle to keep my arm warm as the IV for this chemo was very cold. They recommended I do this and it really helped. Room temperature drinks were still too cold so warm apple juice or warm squash for about 5 days did the trick.
I did see some women in forums asking about hair and nails etc (and too right - we still should be caring about ourselves!!). I found having gel nails was fine (I was worried my nails would fall off!!) and I didn’t have any hair loss. I just took it easy in terms of letting my hair dry naturally rather than lots of hot hair tools etc. Of course this can be different for everyone but I did notice people asking this sometimes and a little self care always helps!! My skin was drier but I used Aveeno as it’s oatmeal based and more natural and this helped.
Fast forward I’ve just finished the last of the chemo about 2 weeks ago and I’m feeling good (just very tired still). I was terrified how this was all going to be. I was even embarrassed to tell some people I had cancer (not sure why I just did).
I try to tell my friends don’t think you’re ever too young, fit and healthy - this can happen to any of us. But I do believe not delaying and going to the GP asap saved me. And my children kept me going.
There is light at the end of the tunnel, just think small steps and not too far ahead.
Sometimes there is no ‘why’. I think we all want to know ‘why’. So if you have found yourself in a situation like mine.. just try and take baby steps. Don’t think about everything coming up - just get to the next appointment - and don’t put pressure on yourself and don’t feel the need to explain everything to everyone. You need to put yourself first.
I wish everyone all the best on their journey xxx
Hi Pennyshouse
Firstly I hope your feeling well and are still feeling as positive as you sounded.
If I may add my cancer care to your feed.
July 1st 2023 i had no symptoms at all. Hadn't been to the toilet in 4 days so called 999. The ambulance took me to hospital and I went for a CT Scan, with me thinking it was just wind or at worst appendicitis. But oh no the surgeon came in my room with another chap telling me it was something more sinister. That was the beginning of my cancer journey.
On the 4th July I went into surgery and they removed 6ft of bowel including my apendix (at least I'll never get appendicitis), 7 hours later I came round and surgery was a success to my relief. Spent another 2 weeks in hospital recovering, had some bad,low days but everyone, yes including the lovely tea ladies were absolutely superb, so lovely, compassion and supportive. Anyway on coming home the colon specialist called me and give me my results, Colon Cancer stage 3 T4N1 but luckily hadn't pretruded through the main bowel sack. They decided I must have chemotherapy due to the staging of the cancer. 8 Rounds of CAPOX , oxaliplatin and capcetabatine. I struggled badly with the cold part and the sickness but after asking for different sickness medication it was bearable. All the staff were diamonds. Every 3 weeks asking me if I had any issues or side effects, now then if I had said yes I knew my dose would have been reduced so I said no every time. Anyway to cut a long story short hahaha I now have CIPN. It's fairly bad. I can't feel my feet at all. Can't hold anything cold. I constantly drop things, it's a nightmare but like my oncologist said to me I was happy to put up with the toxicity to prevent the cancer returning. I don't even know if I'm wearing socks or shoes. Have to walk with a stick now and have hand rails everywhere. I'm only 52 so feel like an old fella now but like I say to everyone around me all this is just a small part of my cancer journey and the outcome is far better than the alternative. I'm happy my brilliant surgeon told me the cancer has gone and my 1st scan and blood tests showed nothing visible. So 18 months later I'm still here, ok I'm now slightly disabled but I'm here to tell the tale.
And that's my cancer journey.. I hope it's the last one.
Wishing you and everyone else on their own personal cancer journey all the very best xxx
