BACK FOR THIRD TIME?

[Katmal-UK]

Hi I'm new to the site. Originally diagnosed in October 2007, then again in December 2011 and now my CA125 rising. Having another blood test on Thursday to see whats happening then a scan on 5th July. Overwhelmed, devastated, feeling selfish when there are other ppl worse off than me. Daft but I feel I need my mum and dad but mum died in 2006 from OC and dad died 6 weeks ago. Im probably rambling but I feel as if I'm in a bubble and the seeing the world through a haze

[citrine]

Sorry you have this hanging over you, particularly coming so soon after your dad's death. I know it isn't much comfort but it is good that you have your scan date sorted out and that it isn't too far in the future, though I'm sure it will feel like a long wait for you. Let us know what the outcome is.

Thinking of you

Love Mary xxx

[wendydee]

I am glad you have found us, but sorry you have had to. It's particularly difficult to cope with anything after losing a loved parent, isn't it. There's not a lot I can say to reassure you, except that you will find a way through all this, and we are here when you need a friendly cyberhug (((xxx)))

Love Wendy xx

[Hidden]

Hi welcome to the site that no one wants to join, I am so sorry that you now have a third recurrence..it is understandable that you are upset with what you have been through as well. You have come to the right place for support.. we all know how isolating ovarian cancer is, the good thing is that you had a long remission after diagnosis....and quite a good remission the second time so it is likely that you will achieve remission again..( I do hope so) I see you don't live too far from me as I live in Chester are you at Clatterbridge or Christies? If you are at Clatterbrige I will be there on Thursday too.

Sending you best wishes love x G x

[Katmal-UK in reply to Hidden]

Hi Gwyn

I'm not far from you and yes I do attend Clatterbridge. I'll be there Thursday for more blood tests and then again the following Friday for a scan. Having said that I'm not sure the best way forward. Not sure I'm prepared to take on more treatment, just the way I feel at the moment. Usually a fighter but just not sure at the mo....

[Whippit]

Dear Katmal

It's good you've posted. We'll do our best to offer you support and friendship.

You must be in turmoil having just lost your Dad and I'm sure this has added to your feeling overwhelmed by this latest bit of news.

It's really good you've got a scan booked in 10 days time. Better to get a picture of what's going on even though you probably don't want to know or think about it at the moment. Take heart, if you can, you've had two good long periods of remission and this must augur well for you.

Keep posting. Please let us know how you're getting on. None of us is in a better situation than the other. We're all (well the women) living with a diagnosis of ovarian cancer and we're here to support one another and hold out a hand of friendship.

with love xxx Annie

[Hidden]

Dear Katmal -- there is NOTHING selfish about feeling crappy about a recurrence, any recurrence. You would be a superwoman if you didn't really feel this, and it IS bloody unfair. Am so sorry you have to face this again. But very glad you have posted, and hope you will keep doing so. This period after losing a second parent is horrid and odd anyway - doesn't it make you feel both very old and young at the same time? I know it did for me - lost mine about 3 years apart, both to cancer. I know exactly what you mean about the haze... Your mum having had OC must feel extra destabilising I suspect. Am so glad you found the site, and us. These ladies are pretty amazing, and you can be sure of as much moral support as they all can muster. Be strong

Love

Sue xxx

[TrishLey]

Know that we are here and we are listening and sending virtual hugs your way. Let it all out there is nothing selfish about that!

Love

Trish

[Katmal-UK]

Hi All

Thanks for all your words of support. Your right about feelings regarding the recent loss of my Dad, I feel like the oldest orphan going... Not even sure I want to carry on this fight, just want to be with them both at the moment. Maybe it's just depression setting in and I'm hoping counselling at the local hospice will be able to pull me out of it. Struggling to muster enthusiasm for anything at the moment, sitting here at work and I don't even want to be here, which is odd because I absolutely love my job. I have a wonderful partner, children and grandchildren but nothing seems worth the fight anymore, what's the point when I know how it's gonna end. Wow what a 'I feel sorry for myself fest'! I'm hoping you'll all understand my emotional state at the moment, or is it just me who feels overwhelmed? That's where the thoughts of feeling selfish come along. I feel like running away, but I can't can I, nothing will change, I can't outrun this .....

[VickyEm]

Hi Katmal

So sorry you have had this set back and that you are feeling so low. I can totally understand what you are going through. I had a similar 1st recurrence to you (5 years after inital diagnosis), and remained positive that I could beat this. However when I had my second recurrence I thought that 'this is it' and thought I would only have a matter of months left. The thought of going through more treatment just to buy me more time seemed pointless and I might just as well go sooner rather than later.

I am pleased to say, that my third lot of chemo had a very good result. I did not achieve a full remission, but my disease was stablised and that was over 3 years ago. In total I have been on this journey for over 13 years. I have had many ups and downs along the way, but I am living very well with this disease. It will take time to come to terms with this, so don't expect to be okay with it right away.

Waiting for scans or appointments I find is always the hardest part, but once you know what course of action will be taken I am sure you will be able to feel a bit more in control again.

Sending you many hugs and warm wishes. Vx

[Katmal-UK]

Hi VickyEm

Your reply does help and I know there is always hope, I just think, like you say, I need to come to terms with what's happening. My mum went 18 years from diagnosis and I've always said that's what I'm aiming for but it just smacks you in the face, that phone call 'your CA125 is rising' or 'there is sign of recurrent disease on your scan' - don't kniow why I think I'm special and will be the one whose going to outlast it. So many mixed emotions, I'm not even sure I feel sorry for myself, just more angry and resigned. Angry because I won't get to go on another hol this year, angry I wont be able to have the grandchildren when they come to visit in August because I'll be in treatment. Angry I wont be able to keep on top of the garden and house (although my partner is wonderful and tries so hard). Angry, Angry, Angry because yet again I have to put my life on hold. Selfish because I KNOW there are others out there who haven't been as lucky as I am. So many emotions...... tears because I lost me Dad 6 weeks ago and the first thing he would have done is given me a hug and boy do I need that hug, miss that hug. A 54 year old daughter who needs her dad. Feels like I'm rambling again ..... so many emotions, thoughts, feelings I cant seem to control.

xx

[Whippit in reply to Katmal-UK]

I've just seen your post question about rising CA125, and then remembered you'd posted a little while ago when you were really down. I've just had another look at all the threads. I really do hope these help you.

I would just say that your life doesn't have to be on hold because you are having treatment. I had the standard 18 weeks of chemotherapy in 2011. I was given all the warnings about avoiding public places, air flights, people with infections, etc.

During that 18 weeks I got married, I took 2 holidays abroad flying both times, I never stopped seeing my grand-children who were just 2 at the time, I went camping and I did a lot of walking and cycling out in the fresh air and in the sun. I did resent all those regular hospital trips, and I hated the blood tests even more than the chemotherapy but they were small sacrifices in order to gain extra years of life. My life wasn't on hold during my treatment. It was a very rich time.

Let's hope if you need more treatment you will also be lucky. If you are feeling well there is no reason not to see your grand-children or take a second holiday. You just need to be a bit cautious.

I hope by now you've been able to seek help with the counsellor and that this is helping make sense of losing your Dad. My Mum died 14 years ago. My Dad died two years ago at the same time as I was diagnosed with ovarian cancer. I still miss him and I also felt the hollowness of being an orphan. Time is a great healer and you will feel better about this and your memories will only be of the happy times you shared with him with none of the sharp pain of grief.

I just thought I'd return to this thread to ask how you are before posting up about rising CA125 and your impending scan next week. Take care of yourself.

love Annie xxx

[VickyEm]

Hi Again,

Just wanted to add that you may not have to start chemo right away. A few of us are on wait and see, where they try to hold off the chemo if we feel otherwise well, even with a rising CA125. Its all such a shock at the moment for you, and I am sure things will seem clearer once you have all your results.

Even if you do have to start a new chemo regime, it does not mean you cannot go away on holiday. If you do not feel up to going abroad there are some beautiful places in the uk where you could go for a change of scene and some pampering.

As for being angry, that is totally normal, maybe you could give in to it and smash a few plates (but make sure they are your own!!)

Vx

[drdu]

Hi Katmal.

All your feelings just now are perfectly normal. My advice would be to keep fighting, as there is a lot of research going on, and even a cure could yet come. I am a retired GP who has primary peritoneal cancer, a variant of ovarian cancer, which recurred once, and so not "curable" but I have kept very well for the past 2 years plus. Don't make any decision in a hurry, but I would always tend to go with what your oncologist recommends.

I know just how you feel. It is good you have your partner and family to support you. Sending lots of love.

Eileen xx

[Katmal-UK]

Thanks Eileen. I suppose I'm just overwhelmed at the moment. I feel like the only one who feels like this, the permanent feeling of butterflies in the stomach, the feeling of total vulnerability. People say things which I'd normally pass off with a shrug or a quick answer I now feel like crawling into a hole and having a good sob. Trying so hard to carry on as normal as if 'I can do this' but inside feel like a frightened child. Am I the only one who feels like this when all round me on this site the other wonderful women seem so strong. 54 years old and I'm missing my Dad, who passed away 6 weeks ago, like you wouldn't believe. I miss our chats, putting the world to rights, our hugs when id see him or leave. I'm writing this and I'm sobbing, I'm no-ones daughter now. I feel so alone now, even though I have a wonderful partner and family. rambling again, always seem to end up with my thoughts rambling.... Can't wait to go to the hospice day centre Friday. To people who listen who understand.

xx

[Hidden]

Dear Katmal,

Just to say you are still in my thoughts and prayers,I understand what you are going through, when we are first diagnosed with ovarian cancer we do our best to live as "normal" a life as we possibly can (i.e. return to work, have holidays abroad etc) but it is a very different scenario when you are now six years post diagnosis (and perhaps a third recurrence) quite frankly it is tiring to say the least... there is no getting away from the fact that lifestyle do change, perhaps having to give up a job, housework piles up, holidays that once was a joy now becomes a chore (even packing is hard work) not to mention the hike they put on travel insurance, and while some people are ok with going away without insurance... I wonder if they consider that it is a trauma for their travel companions too, you see it really isn't just about us is it?..... I guess what I am trying to say is that these feelings you are having are completely "normal" (not forgetting you are still in grief which in itself is debilitating) I am sure you will come out of this, because you have done so well already... the grief will remain and will come and go in waves...but you have a loving family that will want you to keep on going remember how you felt in the loss of both parents? a good enough reason to carry on.

So please don't think you are selfish (you are not) and we honestly do understand what you are going through (I am in my fifth year) so use us to share these feelings with it must help to get it out... I am sure many of us can relate to this.

I did look out for you at Clatterbridge but not knowing what you look like (and you not knowing what I look like) there was a limit on how many people I could ask.. one lady looked at me as if I was daft teehee.

Best wishes love x G x