Newbie - A bit lost

Firstly, crumpets every time .

Thanks for the welcome and suggestions. It certainly feels like I have come to a supportive place. Still feeling a bit overwhelmed and more than a little anxious, but hopefully I will settle once I have my CT and know the size of the hill to climb

Hello Andy. Sorry you find yourself here, but I hope you find lots of support and advice in the days and weeks ahead. I was diagnosed in April, age 52,  following a bowel screen ‘hit’. I’ve had a week of radiotherapy and finished 4 cycles of chemo 3 weeks ago. Meeting surgeon tomorrow to discuss surgery - told at the outset I will need a permanent colostomy. I have to say I still struggle to accept things and at times it feels like it’s happening to someone else. But, we will get through it! I wish you all the very best. Moira 

Good luck with your journey. How did the scan go. The scans and prep for them can be unpleasant and unnerving as to the outcome. I know its difficult and you may feel very lost in the turmoil but whatever the outcome, there is ALWAYS light at the end of the tunnel and a life to be LIVED.

You're not alone 

Hi Moira, thank you for your support. How did the talk with the surgeon go? I hope it was a positive one.

I know I'm new on here, only had my scan yesterday, but if you ever want a chat please message, Andy

CT scan was quick. Disappointed they say 4 weeks for results, the MDT meeting is next Monday and I was hoping they would have all test results.

I am trying to focus on the positives, and this forum is helping so much.  You are right, regardless of what they tell me, I still have a life to live

Hi Andyrich

Some of us experienced stints where quite a few weeks passed while things were reviewed - sadly covid, holidays and resource shortages were the reason in my area.

It can be frustrating and worrying but they will get the right specialists then multi discipline people to review. You will then have accurate facts and the uncertainty will disappear and clear action plans appear (if necessary).

My suggestion - busy yourself with things you love right now.

Good luck!

Hi Andy!

Welcome to the forum. They're a great bunch here (think I need to include myself in that now though cos I'm an `oldie`) and there will always be someone here to give advice and get what you are going through. I am supporting my husband Jay through bowel cancer diagnosis. His has actually recurred after being operated on to remove his tumour in January of this year and he found out at the end of May beginning of June this year the cancer has returned. He is currently receiving combined chemotherapy of Oxaliplatin and Capecitabine (CAPOX) as surgery was not an option on this occasion. He is midway through his 4th cycle and up until now has sailed through it but just recently hit a wall in that this cycle is just making him feel like shit. Our journey started almost 2 years ago in November 2020 when we were still in the grip of covid. He had previously been diagnosed with Type 2 diabetes and we were working on that before covid happened then exercising regularly eating healthily then covid happened and everything shut down and no one was going anywhere so the exercises and the healthy eating fell a little by the wayside. He started going to the toilet more than normal and eventually got an appointment with the GP and he got him to send in a stool sample he was then referred for a colonoscopy which showed up `abnormalities` but without CT and MRI scans at the time couldn't actually say if it was cancer. Then he got his official diagnosis in July 2021 and a bowel resection operation and now has a permanent stoma. His tumour according to his surgeon had been lying dormant for about 3 or 4 years she said and then the symptoms just began to surface at the end of 2020 but was localised meaning it hadn't went anywhere and wasn't likely to which was good for them because he went for a course of chemoradiation to shrink the tumour in prep for surgery where it was was in an awkward position and it needed to be shrunk down before surgery could be performed. Everything went well and now well the rest is history as they say, and we are back a square one fighting again. His recent blood tests etc have come back normal and he had a CT scan last week, so we just need to find out the results of that -scary because that's how we found out the cancer had returned when he got blood tests at his follow up appointment in May, and they sent him for another scan this is when they `find things` you didn't expect to be there. As I said Andy this is the place to be if you feel a bit lost with your diagnosis. Take Care. 

Vicky

Keep focusing on the positives Andy. 

I was told after surgery that histology results could take up to 6 weeks, however they came much sooner just 10 days. Fingers crossed your results will arrive soon and than you know what you are facing and you'll have a plan of action. Stay strong. Xxx

Hi Andy. It went ok, thanks. Surgery - permanent colostomy - is on 17 Nov. I’m dreading it, oddly I have found that it’s when dates come in it all seems very real and scary. You are at the most difficult point, waiting for results. I ‘cheated’ and phoned up for my scan results, which a nurse gave me a couple of days before meeting the surgeon the first time. I was told it would be a mdt meeting, but it was just the surgeon and a colorectal nurse there. I was told then I would need a permanent colostomy as the tumour is so low down and there was ‘lymph node involvement’. I hope all goes well with your meeting - keep us posted! X

Hi Moira, sorry to hear how you are feeling about the surgery, I will have everything crossed for the 17th and look forward to an update .

The waiting is getting to me a bit, but the comments and advice on here has been amazing. I am filling my days with as much fun stuff as I can in the expectation that I may not hear for a while.  I love the ‘cheat’ though, I may be employing that if the waiting gets too much .

Take care, Andy x