Newly diagnosed

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Hi I had ESD to remove a laterally spreading tumour in July following a colonoscopy in May. Initially it was 2cm and the biopsies from the colonoscopy were diagnosed as low grade dysplasia and nothing to worry About. I then had the procedure to remove the tumour. The surgeon was quite candid that in his experience a tumour that size would have cancer in it but this would ‘cure’ it. It turned out that it had grown in 6 weeks to 5cm and they couldn’t remove all of it. I had a phone call Thursday 27th July asking me to go in the next day. I think I knew at that point I wouldn’t be having good news. It appears that it is cancer and because of where it is I need to have resection and it is most likely I will have a permanent stoma. The nurse was lovely, but very embarrassed because she had told me the initial diagnosis. I ended up reassuring her. She has booked provisional date to see a surgeon on 1/09 and surgery on 15th. I’Ve not got anything in writing. To be completely honest I haven’t got upset, but I feel a bit numb if anything. Friends and family keep bursting into tears which is not helpful and I’m finding I’m exhausted with propping them up. I think at this point I’m worried about finances, my job, the future and dealing with a stoma. I just don’t know what to think or how to feel and my mind seems to go around in circles. It’s all a bit scary and I’m getting anxious as every time I go to the hospital it’s always just that bit worse.

Artsie over 1 year ago

Good Morning TaffyScottinEngland

I think that joining here is a really good step in processing what’s happening.
I found that I could come here which protected my family. My daughter was the same she just burst into tears so I tried to stay off the subject as much as possible. I did talk to my husband but mostly I had amazing support in the Stoma group.
Bowel Cancer is very treatable and is planned around the individual for the very best outcome.
I found the early stage the hardest I was in flight or fright could do neither so I froze.
Keep chatting here if it helps. Others will be along soon

Sending you a hug

Ann
‍

Kareno62 over 1 year ago

Hi and welcome to the board. I can well imagine that you’re pretty shell shocked by it all but try to focus on getting yourself in a good place mentally and physically for the op. Yes it’s a big op but necessary to remove all the tumour cleanly and safely - I’ve attached a link to a booklet about bowel operations if you want to have a look?

https://bowelcancerorguk.s3.amazonaws.com/Publications/YourOperation_BowelCancerUK.pdf

Maybe you could point out to your family that they’re not helping you and it’s adding to your stress and anxiety seeing them like this? There are support boards on here for family and friends - it’s natural for them to be upset but you need support from them not the other way round.

You will quickly get used to the stoma and there’s a support board on here where there is loads of information and tips. My friend has a permanent one and you’d never know - she works, goes on cruises, trips abroad etc. - just has a normal life. The nurses will make sure you’re fully comfortable with the stoma before leaving hospital and will support you afterwards too.

Ileostomy, colostomy and stoma support

Please give the support desk a ring on the number below? They can listen to your concerns and also advise about any financial concerns and know what is available?

Hope this helps and please keep posting and we’ll help and support you through this

Take care

Karen x

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

TaffyScotinEngland over 1 year ago in reply to Kareno62

Thank you both for responding to me and thank you Karen for the links. The hospital have rung me today and my pre-op is on Thursday. I am also joining the enhanced recovery programme on Monday. It’s now becoming real. The link to the booklet was really informative.

many thanks Andrena

Capt Pugwash over 1 year ago

Hi TaffyScottinEngland, much empathy and best wishes coming your way from me. I found this online community really helpful so would echo Artsie in it being a very good move. The phrase that I found helped "manage" people's reactions was that despite the bad news and impending treatment "I was choosing to travel realistically but hopefully and they could support me by mirroring me". My colon cancer was my third one in ten years and I have found a mindset of dealing with what was in front of me and not trying to manage the process helpful, appreciate may not suit everyone. I found the information on finances from various MacMillan booklets hugely helpful. My operation (right hemi colectomy) was on 21st June and the stoma I was told I might need turned out not to be required, appreciate everyone's journey is different. Where things got most challenging for me was when I retreated into myself. A combination of my wife and the online community was where I went to avoid that isolation. Hope this helps to some degree.

Maninbath over 1 year ago

Hi. I was diagnosed with bowel cancer following a FIT test as part of a routine medical. I had no symptoms whatsoever so you can imagine the shock. I had a bowel resection in July 2022 but, in my case, no need for a Stoma. Although I have only recently dived in here I have spoken with MacMillan support staff on a number of occasions and have regular contact with a Well-being Counsellor. I have found this useful for rehearsing ‘difficult’ conversations I need to have with family and friends. I have also tried to learn as much about my particular cancer as possible and this has made it easier to understand and absorb what my oncologist tells me. There is a huge support network out there, carry on reaching out.

All the best.

Maninbath