I feel oc could be returning: I haven't felt very... - My Ovacome

My Ovacome

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I feel oc could be returning

nikki9 profile image
5 Replies

I haven't felt very well since finishing 2nd cycle of carbo/gem which was 3 months ago, I am very constipated, uncomfortable upper tummy and twingy pains in back when I had scan after treatment was told oc inactive not quite sure what that means, my onc is not very communicative and very pessimistic, is any od this normal or is it return of oc. This site is brilliant love to all x

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nikki9 profile image
nikki9
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5 Replies

Hi Nikki,

I am sorry that you don't feel well, it is still early days though, and speaking for myself after having a recurrence and two lines of chemo, I wonder if I will ever feel the same, as even ten months in remission I have lots of twinges but I am told unless the symptoms persist for at least three weeks (ie don't come and go but stay) then there is not much to worry about,I can say though that I had persistant symptoms that didn't come and go for over a year before anything was done....sending you love and best wishes x G x

wendydee profile image
wendydee

Hi Nikki

I wouldn't have any idea what this might mean, but if you give Ruth a ring on 08453710554, she is a trained nurse with lots of experience of OC. If you chat with her, she will be able to advise you about what is the best course of action you can take, if anything.

I know what it's like, though, it's so easy to interpret any twinges as a return of the OC. I hope your worrying is needless

Love Wendy xx

TinaWright profile image
TinaWright

Hi Nicki,

This is such a worrying time for you luvie and I can understand with all my heart how this feels at this moment in time. Of course none of us can tell you everything is ok, but I hope a little reasurance helps.

Firstly what I am about to say you must not accept that everything with you right now is fine because it is vitally important that you talk to your oncology nurse. She may suggest you go into the clinic to see your sepcialist to talk over your concerns.

Never be afraid to ask questions, make a list before you go or telephone. It doesn`t matter if you find the need to keep asking the same questions over and over again until you feel satisfied.

However, for me personally it was 2 years I had my big op and almost 2 years when I started my first chemo.

I was constipated for a looong time, infact I have only just noticed going at a regular time of day with ease, as I did pre-cancer. It can take a long time for everything to get over the trauma of surgary.

I still have the ocasional twinge and a sore lower back but I have been reassured this is down to leasions which someone else mentioned recently on here.

It takes ages for the muscle tissues to heal and these leasions can have a tendency to feel sore years later.

Its such a worry because we can do our own head in over every detail of discomfort and it is perfectly normal to think the worst is happening.

In oncology these worry`s are perfectly normal and acceptable - it is expected for us to report them and worry until we have clear answers.

Chat to Ruth and also contact your oncology clinic - trust me you will feel so much better, you mustn`t bottle it all in the hope it will go away.

We need reassurance all of the time and that reassurance is so important to your well being.

Let us know how it goes, bless you

Love from Tina xxxx

Whippit profile image
Whippit

Dear Nikki

I'm really sorry you're feeling poorly. I think you've had good advice from Gwyn, Wendy and Tina.

I am worried that you feel your oncologist is pessimistic and uncommunicative. It's really important that you feel you can talk to them and ask questions. It's also important that you feel supported by them. I just wonder whether you could talk to the oncology nurse at the hospital to explain how you feel and if you can bear it discuss the diagnosis again to understand exactly what they mean by 'inactive'. I had an hour's appointment recently going over everything again and found it helpful to understand everything better. I would say that 'inactive' is good but you need to check this out with the doctor.

I had a locum oncologist throughout my diagnosis and treatment last year. She wasn't an Ovarian specialist and whilst she was nice I found her difficult to talk to and pessimistic. Lots of negative things she told me just haven't happened. I

'm in the same place as you with twinges and generally feeling less well than I did last year. I've decided to work on my fitness. I walk every day anyway but I've now chosen to swim 3 times a week to see if I can make myself feel any better.

love and hugs xxxx Annie

MargaretJ profile image
MargaretJ

Dear Nikki

I'm sorry that you feel so unwell. I echo the advice to talk to Ruth and also suggest that you start a diary and record any symptoms every day. That way you will be able to show your consultant and your GP if they are persistent. I have kept a diary since I was diagnosed and that way I do not forget what I want to tell the oncologist. I also have an excellent specialist nurse to whom I can talk and who is always ready to answer questions. I also suggest that you go back to your GP. You should try to see the same GP all the time if you are in a group practice so that you can build up some kind of rapport. My GP retired earlier this year and I was very worried but his replacement is brilliant and has been very supportive.

I go with Annie on the fitness thing. Because of the sciatica I have bought a gym ball and I sit on it in front of the TV and wiggle my behind. I do it while my stoma irrigation is working and it has helped to reduce the back pain and kept me very flexible. (Remember I am 72 and might be expected to be 'less fit').

I feel very good at present but I do get days when I am really 'down'. It is perfectly normal and I just try to roll with it. I was having indigestion symptoms and thought that the OC was back! My GP ordered a CA125 test and it came back 'normal' that was when I realised that I was taking the Ibuprofen for the sciatica on an empty stomach! I am now taking it after meals and the symptoms are improving. I only realised this because of the diary as I note what I eat and what medications I take and at what time!

I do hope that you manage to see a more sympathetic oncologist.

Love M xxxxxxxx

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