Hi,
I’ve recently joined this forum to read and share experiences and advice. I’ve had a bit of a journey so far and it’s only just begun. This post might be longish, sorry, but I need to write it down somewhere.
I’m 39, a family man with 2 young children under 5. Non smoker, didn’t drink much and fairly lean and fit. I didn’t really think I’d be writing the title to this thread and what I’m about to write but I see there are loads of people going through it and not all 60/70 + as was the perceived idea with bowel cancer.
I got some stomach aches in June 21. They weren’t too bad and disappeared. I thought it was stress due to work. Then from Christmas onwards it came back and really started to escalate from Apr and esp June onwards. My dad has lymphoma and was quite unwell and hospitalised Apr - June and my mum was diagnosed with stage 4 lung cancer last Dec 21st and given 3 months to live (she’s still fighting but in an hospice nearing her time). I thought my pains were due to anxiety about that.
I stopped caffeine, alcohol, cut down my junk food and read and watched films etc to have an outlet from stress / anxiety. It didn’t help. So I went to the Dr between July-Aug and they put me on a low fodmap diet for a month, with boscopan. That didn’t work, so they added peppermint capsules. My blood and stool came back clear and ‘they looked for nasty stuff’ but I was clear but they didn’t tell me everything they tested for so the focus was on IBS. Over time, the stabbing pains got worse so at times I was in the bed in agony rolling around.
Losing energy, weaker, loss of appetite, struggling to eat, being sick, pooing less, passing no wind, 1/2 hrs broken sleep a night. I was deteriorating and I needed to sort it. The Dr said no wind might be my healthier diet. I said I might be blocked up. I was prescribed 4 more medicines but before I picked them up in a couple of days, I felt unwell and went to A & E that weekend. I was being so sick food from 3/4 days previous was coming up and stank almost like poo. I told the dr in A & E and he said he could see I had been prescribed 4 more medicines and to go and start that and it should clear it up. He thought about doing a scan which I was keen to do but changed his mind and said they’d do a referral after trying more medicine.
In the end in total, I went to my Dr, had phone appts and emailed them 5/6 times and on 2nd visit to A and E barely able to walk being sick a lot and after an emergency X-ray and Ct scan they told me I had a growth completely blocking my large colon that needed to removed immediately. They told me it could possibly be cancer and they will test for it and that I was also quite weak and exhausted and there was a rise in covid in the hospital and if I got it I might not make it due to my current state.
I made it! But was in agony and they managed to do it without giving me a stoma. Then 5 days later disaster, one of my drain holes was leaking a disgusting smelling yellow liquid. I highlighted it and a dr was rushed in and proceeded to probe (stab) into the hole with a large ear bud. It was like someone turned on a tap. Yellow and brown liquid spurted out and she said I was leaking waste all inside my body and something had failed. I needed a 2nd emergency op in 5 days otherwise I would get sepsis and be dead in 2 weeks apparently. They also said I was high risk as I was weak and they had to reopen everything and try and clean it. This time they would prob have to give me a stoma and remove some bits of my insides to create it.
So on 23rd Oct I woke up with a stoma, absolutely covered in tubes, needles in arm, neck etc, tube in nose to stomach, tubes coming out my stomach (you remember), unable to move and in 10/10 pain. Morphine didnt touch the pain. Fast forward 3 weeks. I’m told it was bowel cancer but they removed the tumour, and 2/3rds of my large intestine and a load of surrounding lymph nodes as it had gone to some of them. They were confident they had cut everything out. It was stage 3 had spread to some lymph nodes that were cut out and scans haven’t found anything anywhere else. They said it good they cut it out and the scans were clear at that time but I may have cancer cells in my body still and they want to do at least 3-6 months chemo but the relevant team would go through all that with me.
After 39 days in hospital, in pain and slowly recovering due to the back to back ops, whilst waiting ages for my stomach to wake up, I finally got home last Thurs. It’s been a huge adjustment. I hopefully start chemo in 2 weeks if my belly button hurries up and finally heals.
I try to be positive and look for wins each day or progress. Im going to run my own race and I don’t take anything for granted anymore and am determined to do everything I can to fight this and get a positive result. I was so focused in hospital as I was in so much pain but I’ve had a slump now as everything has sunk in and the cancer specialist the other day told me a load of clinical stuff I didn’t want to hear which knocked my wife and I for six and was slightly different to what I was told in hospital (slightly more aggressive form of cancer, 10-14% survival rate over 5 years and even if successful higher chance it will come back due to nature/stage of my cancer). Those bits sound different to ‘mopping up’. So I’m focusing on me and my individual treatment and not the stats.
I guess it will be quite up and down.
I wish everyone the very best in their fights and individual journeys and will be keenly looking at peoples experiences and useful ways of dealing with things.
Hi Karen,
they are looking to test for Lynch syndrome and the medication for the chemo is Folfox through my Picc line. I’ll check out the links.
Thanks 
Hi Chris!
So sorry to read this. Just goes to show though this B*****d called cancer can hit anyone anywhere at anytime regardless of who you are, where you come from or what you are. The myth is if you don't look after yourself eat the wrong things smoke like a lum (scottish word for chimney
) and drink like a fish you're a candidate to get it but there you go it's hit someone like yourself without any `vices`. My husband is going through it now has a recurrance after getting rid of it in January this year when he went through his operation, and they got it all or thought they did. Still maintain if he got adjuvant chemotherapy (after the op) we wouldn't be where we are now and for that I feel very bitter because I asked the oncologist at his follow up appointment in February should he not go through an extra course of chemo and was told no because if its not necessary they don't do it and they weren't even going to do any for him as a precaution but they're the experts so you're going to listen to them. Then 4 months down the line what happened?? it was back. My best wishes to you on your journey. Take Care.
Vicky.
Your 4 year old will keep you gping and provide an insight that only a four year old can!!
I have a 7 year old cousin that was fascinated by the little blancmange sat on my tummy when they came over.
Its almost exactly two years since my diagnosis and op was in feb 21 so the journey is well and truly on the way.
All i can say is (my personal belief) positivity breeds positivity. I hope you, Sid and your family can have a great Christmas! 
