Bettyann

[Bettyann]

I need to know if anyone else has been left with nodules on the peritoneum after debaulking and 6 cycles of chemo, although told that I am in remission I still have a nagging doubt about it all and wonder how long it will be before this nasty disease flairs up again,

[MargaretJ]

I was clear of visible tumours after my debulking op in 2010 but by March 2011 i was back on chemo. They have never talked about remission. At stage 3c on diagnosis my oncologist made it clear from the start that this is treatable but incurable and I have to learn to live with it and manage it like any other chronic disease. It has helped me to come to terms with it. I endured the discomforts of chemo when it was working but when it was not shrinking the tumour we stopped it. Luckily this tumour is operable so it comes out in Dec. On the downside I will almost certainly have to have a colostomy but at least I will no longer have problems requiring me to rush to the loo or call in dynarod. Meantime I am living life as fully as I can.

[BusyLizzie in reply to MargaretJ]

Love the dynarod comment, made me LOL. Been there, done that - or is it not done that

My chemo nurse also says the same about it being a chronic disease, just like a heart condition, which needs to be controlled.

All the very best for your op.

Love Lizzie.

[MargaretJ]

Remember you are still you, you have a disease you have not become it. Treat it when necessary and get on with life. If you feel miserable think of how much worse it would be to have a degenerative illness like Parkinson's, Alzheimers MS or

MND.

[sarah1963]

Hi Bettyann

First of all sorry to respond to a question when I don't know what I'm talking about! I know lots about oc but not nodules. I think I almost sleep walked through the first few years and didn't ask for any details. It sounds to me that you do want to know everything now in which case you will have to ask to speak to your consultant again. But bear in mind that they may answer you according to the statistics etc and they can't know how you are going to be. Enjoy the fact that they are using the word remission (I've never heard it!) I know its easier said than done - to enjoy life and not worry about what might happen but that is the name of the game. AND you may have very good reason to be optimistic.

Love Sarah

[Meryl]

Hi Bettyann

I do so much agree with Margaret about getting on with the treatment but getting on with your life. It takes a while to get to that point of acceptance but once you do I've found life's still pretty good. I think my family and friends thought I was 'barking' when I told them that I treat chemo/hospital visits etc., as a part-time job that I don't much like but but have to do to keep going. It's worked for me. Good luck with your op. Margaret to you Bettyann. Meryl XXXXX

[wendydee]

Hi Bettyann

Like Sarah I cannot help by having any first hand knowledge of your particular problem, but it is so important to keep your spirits up and eat well etc, so you can fight this horrible disease. Maybe type "staying positive" in the search box at the top and there was some good ideas in there a few months ago, also healthy eating I think may help. All the best,

Love Wendy xx

[MargaretJ]

Hi bettyann! I tend to treat this as an inconvenient interruption to my "real" life. I use my attendance allowance (obtained by my community Macmillan nurse) to pay for help with housework, the garden and the DIY jobs I used to do myself. I go to the cinema, theatre, opera and concerts at least once a week, eat out regularly (so much less tiring than cooking) go shopping and generally live as normally as possible! Vive la vie as long as it lasts!

[Hidden]

Hi Bettyann

I was left with nodules which the oncologist said could be cause for concern, But didn't explain, (when I asked him he still didn't explain) so months later I asked a different oncologist she looked at my notes and said that it could be a problem or may not be anything, so they were keeping an eye on me. I can say that I went in remission for two and a half years, I now have a recurrence but it has nothing to do with the nodules. Hope this helps and that you have a long or permanent remission.

Best wishes Gwyneth

[Bettyann]

All

Thankyou everyone for your comments, especially your dynarod comment Margaret, it sounds as if you have never lost your sense of humour and good luck for your forthcoming op. I feel that I find out more on this site than at the hospital, perhap its because only someone that has been through oc knows what it all means to each person personally

Best wishes to everyone

Bettyann