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
That’s a lovely post Pennyshouse and thank you so much for sharing. I know when I was just starting out I searched for success stories just like yours. Good to hear that you’ve ticked off the last chemo box and here’s to a long and healthy future for you x
Ahh that’s brilliant glad to hear your good results from the scan! X
Hello xx Thank you so much for your blog it has really helped me.
I have got my CT scan on Sunday and I’m absolutely terrified xxx
Hello there, that is great news. Please may I ask what symptoms you had? How big was your tumour? I am so frightened I go for my CT scan on Sunday x
Oh bless you try not to over think (easier said than done). Mine was about 3cm when they found it. I feel like all my symptoms started in one go with no warning, I suddenly had an upset stomach, I felt like no food agreed with me, I had some blood which progressively increased over a couple of weeks while waiting for my consult appointment and at that point I realised I had lost about 7/8 pounds without trying.
i have everything crossed for you with your CT scan. It is very scary and worrying, waiting for results is very mentally draining but try where possible to stay in a good frame of mind. If something does come back - once in the system I feel like it’s dealt with very quickly. Hope all goes as well as possible for you xxxx
Hi Pennyshouse your story is exactly the same as mine, I was 37 at diagnosis, fit & healthy (or so I thought) and have a 5 year old daughter. I’ve never posted on here although I’ve read a lot when looking for reassurance or information. But wow our stories are so similar I just had to reach out. I had my colonoscopy in December - 10 days before Christmas, every emotion you describe I also felt, including crying on Christmas Day while trying to make it magical for my daughter. The waiting was truly awful.
I had a high anterior resection in February via robotic surgery that took 8.5 hours, and also had one lymph node involved giving me a T3N1 diagnosis. I’ve had 3 rounds of capox so far, I start my 4th next week.
Reading your post I couldn’t believe there was someone else out there who’s had the same experience as me at near enough the same age/stage of life. I’m so sorry you’ve had to go through this too, reading your story made me feel less crazy and has brought me comfort, so thank you for sharing. Honestly I could’ve written it word for word myself. I tried to send you a dm but can’t work out how? If ever you’d like a chat, I’m here.
x
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