Feeling lost

Hi Sips7402b0

Wow yes you have had some startling news and where ever you look you look at the worst case scenario, If you feel  that the team did not give you all the information you need then ask for another meeting and take someone with you, you probably won't take it all in but two heads are better than one.

The stoma nurses in may experience are very helpful and positive, I have found the mechanics of my stoma are OK to deal with but still find changing my bag a bit challenging (it has only been 5 weeks for me) but it is getting easier.

I found the oncologist was very informative about the progress that the cancer had made and what any further treatment may involve.

Turning to support like this is a big step towards learning to live with cancer, that is what we do and there is no reason why you shouldn't with the right support find to a new good space

I am 5 weeks post surgery 3 months post diagnosis so I get everything you say. It will I am sure become clear where you are. 

Good luck and I hope that the rant (which you need to do get it out of your system) has helped

Stay positive

Thank you so much for you kind reply.

I am definitely going to arrange another meeting with my oncology team and be brave and ask the scary questions.

My stoma nurses have been fantastic and so supportive, they have also organised community support groups.  The stoma has probably been the easiest part of this whole ordeal, although, I'm not bag at work yet so we shall see how manageable it is then. It was definitely challenging to start with but it'll soon be second nature for you. 

Thanks again, I hope everything goes as smoothly as it can with your journey 

Hi Sips7042b0 and a warm welcome to the board from me. You have had a whirlwind time of it and I can imagine it’s now catching up with you a bit? I’ll try and cover a few of your concerns off but please feel free to ask anything you like?

Post surgery leaks are not unusual - I already had a stoma so had a drain put in my right buttock which emptied into a bag at the side of the bed/ fastened to my leg. It was very uncomfortable but did the trick eventually. 

Size does not matter in this game! The staging is based on how far the tumour has grown into the bowel wall and whether it has gone through the bowel and into other areas so you could have a large tumour that is stage 1 and a small tumour that is stage 3.

Clear margins is good as it means there is no tumour left behind.

Yes 4/27 lymph nodes affected means it is stage 3. However there are things to remember about stats. You are an individual not a statistic. 5 year stats are already out of date as they relate to people diagnosed 5 years ago and treatment is improving all the time. Bowel cancer often affects people of a more advanced age than yourself who may already have other health issues? 

As River Peter suggests, have a chat with your consultant/ support nurse and explain that you would feel less worried with some further information.

If you click on my name then my profile page will show my treatment to date - I was diagnosed as stage 3 in 2016 and I’m still ‘no evidence of disease’. I’ve remained on the board and seen lots of people with a similar staging who have finished treatment and then carried on with their lives and there’s no reason why you shouldn’t be one of them?

Hope this helps and take care

Karen x

Hello,  

Thank you for the warm welcome and your reply has been really reassuring.

This is probably why my doctor doesn't want to talk stages, rather focusing on the individual.

You're right though, I did wonder when it would all hit me, I had surprised myself with how 'alright' I'd been with it all.This is the first health scare I've ever had and hadn't ever been in hospital pre all the above so I think the shock is catching up.

Thank you so much for your reassuring advice. So glad to hear you have continued to be disease free.  

What a lovely place this is