Ovarian cancer

A support group for anyone affected by ovarian cancer to come together, share experiences, and ask questions.

Recurrence ovarian cancer

cupatea
Posted by

Yer hi thanks for your reply .it is very very lonely  cant believe  it all ..was looking so good . Was in tears all day fri . .tiday a bit better  am still going yo work .it my saver at the min . How you doing ?

cupatea
Posted by

Yer hi thanks for your reply .it is very very lonely  cant believe  it all ..was looking so good . Was in tears all day fri . .tiday a bit better  am still going yo work .it my saver at the min . How you doing ?

Arla
Posted by

I'm good thanks, my surgery was august 2017, so I'm nearly two years post op, I'm waiting on a MRI scan now before my two year check up, I'll hopefully be a lot happier when that's past, I've been waiting since February so I'm stressing a bit. 

Have you got someone at work you can confide in? It helps having a friendly ear to talk to

xxx

SussexOvarian
Posted by

Hi Cupatea

Mine recurred some time ago. Last week and weekend were just the really bad days after drugs last week but even though I’ve been there before and knew I’d feel better again I just didn’t seem to register it this time and was really low.

Today I woke up feeling better but still exhausted and had check up hospital appt which always seems cruel when all I want to do is curl up, but gradually coming out of things tonight. Though I expect to be tired again tomorrow after today’s efforts.

My children are very supportive. It’s just I think it’s wrong their lives should be so affected. 

The daughter who drove me today (left 9 home 4) also took me last Tuesday (left 7.30 home 7.30) and Wednesday (left 9 home 2.30) had to take 3 days unpaid work and that’s just one of the six cycles I’m having this time.

Remember, there is always someone on this site who understands. They have really helped me and I’m sure you will find strength and companionship. It’s a strange ‘club’ to be in but I’m proud to be a member of such an amazingly supportive group of complete strangers!

Chin up.

XX

cupatea
Posted by

Thanks again for your loverly reply ,,I agree it a club nobody want to be in , am so scared I don’t know what is happening to me and what in store and how long I have with my family ,, it’s  metal  cruelty.  The thing that goes through my head ,, an so worried like you about my girls  have you ever been on tamoxifen and if so , what side affect did you have ,,  , I live by myself so get very down x pleased your feeling a bit better ,, xx

cupatea
Posted by

Hi I have plenty peopl to talk to , but not so mush at work ,, I have asked for some counselling from the hospital ,, I know exactly what your going through ,, I get so anxious before I go to hospital now ,  but fingers crossed for you , you seem to be haveing different treatments to me x

SussexOvarian
Posted by

Hi Cupatea

No I haven’t had Tamoxifen.

I too am on my own (divorced 1987!) and although I have my 3 girls nearby it isn’t the same as having a partner (although I know from experience all partners aren’t helpful!).

I have been used to independence and doing everything on my own (no choice really as a long term single parent) so relinquishing control to my girls was so hard but I had to, I couldn’t cope with all the info/decisions as well as the treatment.

I fear as I get worse I won’t be able to do even the basics I do now when on treatment. Each three weeks in the last few days before a cycle I just about manage to hoover and dust the house etc, mow the lawns - takes all day, do a big food shop - enough for two weeks which makes meals repetitive as I have to buy things that will keep and I should be able to eat even when nauseous, and make some batch meals for the freezer. At the end of two weeks my fridge is bare! But I can usually feel ok to drive then to replenish it. The girls get me milk and bread half way but I’m too independent to ask for much more and they are so busy anyway. It’s like I just about keep my head above water before it all starts again.

This cycle as I said I was very low but for some strange reason I have since recovered much quicker and I have had a few good days. But I never know how I will feel the next day. I am hopeful though that once I get through the next cycle I shall have some reasonably normal times for a while.

I did talk to a Hospice counsellor before this latest set of treatment who really helped. It was more me talking and hearing my own thoughts. Maybe that’s why I’m writing this! Putting my fears down. Maybe worth you trying?

Anyway, take care and hope you don’t feel so alone.

XX

Fizz181
Posted by

Hi I’m about to start second line chemo  tomorrow with Carboplatin and caelyx. Feeling strangely detached from it but at the same time anxious. 

First line treatment with carboplatin and taxol was pretty bad. What was your experience with caelyx ? 

Fizz

Fizz181
SussexOvarian
Posted by

Hi Fizz

I personally found the Carbo/caelyx much easier than the Carbo/taxol but there could be lots of reasons and everyone is different.

Firstly I had a reaction to the taxol so needed to have it given over 24 hours overnight which meant with the Carbo and preparation two full days and one night in hospital.

Because of the reaction I had loads of extra steroids which I am quite badly affected by.

Obviously I was also in shock from my diagnosis and also had to deal with the big op and a subsequent infection.

Saying this I still think the side affects of the caelyx were less.

I hope you find this too. I know it’s all hard but in some ways when I am having treatment at least you have a rest from the worry of ‘is it back’. Also you are zapping away at it so feel empowered.

Good luck. 

XX

Fizz181
Posted by

Thank you so much for your reply

Your journey sounds very similar to mine with the post surgical infections etc. And you are so right about having active treatment enabling us to park the ‘will it come back anxiety’. 

Managing and understanding how you few can be really challenging and it helps to hear that I’m not alone 

Fizz. Xx

Fizz181
SussexOvarian
Posted by

One more good thing to remember. You are several years behind me in treatment and so many new things are being done and found now.

XX

Wilma780
Posted by

Hi Fizz, I had my first session with caelyx a week and a half ago. First come of days I was really good, thinking this is much better than last time with the taco, then on the fourth day it hit, but truly not too bad. After a few days was feeling good again. Crossing all my fingers and toes that next time is the same. Not had any other side effects as yet, although I know it's early days. 

Ann

cupatea
Posted by

Hi thanks again fir reply , I too like you very independent ,  I am still working at the moment , to it is my saviour at the moment. Keeps my mind occupied , like I said I have been out on tamoxifen to try and shrink or keep it at bay ,, I have it back on my spleen and my liver, Virginia stup , and mammary glands ,, so I have no idea how it all works ,, I know if the tamoxifen does not work , % chance it’s the cemo rote again , so I will have a scan in about 8weeks to see how things go ,, but the tables are a slow working , so they said probably 4 moths till they may see any different ,, my antidepressants have stared to work ,, thank goddess ,, copping a bit better ,,,  I must say I like your positive remarks about new treatments , that’s what people need to here , hope your day is going ok ,, take care xxx

NinsyFarmer16
Posted by

Hello Ann

I am just catching up with any updates on you all and wondered how things are going.

best wishes

Lynne

NinsyFarmer16
Posted by

Dear Cupatea

I have been thinking of you too and hope you are feeling more positive now that your anti depressants seem to be working to help you.

best wishes

Lynne