Chemo or not?

I'm so sorry to hear that Fatz. I guess that, right now, you don't know what's showing up and there may be different options on offer. Its tempting to jump to possible scenarios that may not be correct.

Are there any in person support groups near you that you can talk with? Or can you connect with the GE nurses? 

Please keep us posted about how you get on.

Warmest thoughts x

Thank you Curlycarole. The only people who have really helped me are the STOMA nurses - the COLORECTAL nurses not. Why would a COLORECTAL nurse write a letter re future treatment etc. saying I would need a COLONOSCOPY when I don't have a large bowel anymore? Just in case you don't know, a COLONOSCOPY is for the large bowel, a SIGMOIDOSCOPY is for the small bowel.

When I came out of hospital, it was left to my husband to deal with any problems - I even had to organise for a district nurse to come every day to give me injections into my stomach re blood clots. GP surgery did not want to know..

I need pain killers but to get them from my GP, I need to fill a form in online.....

Take care x

You’ve been going through a lot fatz.  It's true there are many things going on in the world that we may not agree with. Most I have no influence over so I try to let them go. I can have choices about how I go forward with my treatment plan so I try to stick with that. 

As for the injections, I had to have one the night before my op then every day for the next four weeks. I was supposed to have a nurse coming to show me the first time but noone turned up so I had to follow the instructions. I ended up self administering but absolutely hated doing them. I was very relieved when they were finished.

Take care and try to find things to do that you can enjoy, even if only for a short time. 

I love feeding the birds and the squirrels alway entertain me! X

You have to be so careful to what you say on this site. My comments have been deleted 3 times already - oh well there you go hey!

I do have interests, art,literature,music,history,cooking,gardening - I joined this site not just to ask other people about their problems - I thought maybe, some of you could chat about their interests too?

Fatz, I think you are right that the colorectal nurses were wrong to say you need a colonscopy, however I think what they might be suggesting is called an enteroscopy, which is used to take a look inside the small intestine, which you still have.

Its not a sigmoidoscopy, which is an examination of the just the lower part of the colon, the sigmoid colon, and in your case that normally that would have been removed with the rest of your colon.

As you have no large intestine and an ileostomy I think they would have to do the enteroscopy from the top, down the throat, you would be given sedation while they did it. Others might be able to tell you more about this than me.

Surprised the hospital didn't give you more advice before discharging you about your blood thinning injections: my hospital nurses showed me how to do them myself.

I have a colostomy and still have quite a bit of colon. They are planning to do a colonoscopy which I believe will be done thru the stoma. I'd think they could look at the small bowel thru the ileostomy itself.

had an SIGMOIDOSCOPY in 2019 - they found 2 polyps which were not removed. I asked a COLORECTAL nurse and the CONSULTANTS secretary to ask the CONSULTANT whether these had been removed when I had the ILEOSTOMY - It is now over a week and I am still waiting for an answer!

I now am waiting for my MRI scan 19th December - to investigate liver and spleen!!!!!!

I have contacted the MACMILLAN people re what support I would get if and when  having CHEMO - they said SOCIAL SERVICES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1

Hi  and I’m sorry to read that youre frustrated with things at the moment. Have you had chemo previously? It’s hard to predict what support you would need when it can affect people differently - some people feel really quite unwell however I was able to carry on working at my part-time office job? x

HI Karen - no I in have not had CHEMO b4 - my husband has high blood pressure and when I was in hospital for several weeks - 4 days in INTENSIVE CARE - he was not well OK, we have nobody to help us!

I'm sorry you are struggling so much. Being from the US, I can't offer any tangible advice about navigating your system. But wanted you to know I hear your pain and I'm sending you a virtual hug. You are stronger than you think.