Fat belly? No. Ovarian Cancer belly (pt 2)

[TwitterQueen1]

The story of my ovarian cancer discovery is here

This is such an important health issue - there's a reason why OC is called the 'silent killer'. I really want more women to be aware of what few symptoms there are (I wasn't).

This is my story. I hope it's a long one.

[TwitterQueen1]

Meant to say don't report on my behalf but I see your post has gone already.

[Thymeout]

Just had an email from Mumsnet HQ, apologising for the delay. They've been snowed under with troublemakers and trolls this morning. So it's gone now, willy nilly.

YYY re staging. It'd be helpful if it could be revised further down the line but you're stuck with the original, which is a one size fits all arrangement.

[youarenotkiddingme]

Hi twitter. I hope you don't mind me jumping on your thread but I'm so pleased you've decided to share story in order to make others aware.

I'm glad you are doing well.

I'll share my mums story.

End of last year she had a lump in neck. AB shrunk it and it returned. AB shrunk again but not cured and so biopsy was taken. They found cancer cells. She was not even unwell and is extremely active for her age.
PET scan showed cancer in ovaries and peritoneum but couldn't identify cells so dx with cancer of unknown primary.
V high CA125 so had brca test which was negative.

Chemo followed and responded quickly. Few months ago went to meet surgeon who was due to do debulking and hysterectomy 10 days later.
Scans showed she's in remission
Just had 3 month check up and still in remission

There was absolutely NOTHING to indicate she had malignant cancer in her body or any signs of the massive clump of cancer cells she had tangled around each other.

I want awareness to be raised of the signs of 'potential' cancer so it can be caught earlier.
Better to be assessed and clear than assessed too late.

[Popchyk]

Really glad things are going well for you, TQ.

And for everyone else on this thread that has been affected.

[TwitterQueen1]

Welcome onboard Youarenot . This thread is for everyone who wants to pass comment or question

So happy to hear about your mum - but doesn't her story illustrate precisely how difficult it is to spot and/or diagnose ovarian cancer diagnosis?

[youarenotkiddingme]

Oh does twitter. One day she was what we thought was a healthy 60 something and then she's diagnosed with CUP - which is an incurable cancer.
They think now it's peritoneal cancer and so would be classed as 3/4 stage. But they can't be sure.

That one word changes everything.

[Thymeout]

Yes. I think someone should write a little leaflet for post-menopausal women, like they do for girls facing puberty. There's no guide for getting older, with 'This is normal. But this is NOT.' The risk of OvCa increases as you get older, but I put all the minor niggles down to not being a spring chicken any more.

I had a 2 kilo Borderline tumour, and the only symptoms I had were a bit of indigestion, a bit of breathlessness when I ran for the bus and a bit of stress incontinence when I coughed. (3 children.) Nothing bad enough to go to the doc about. The pregnant profile, which should have been a giveaway, I dismissed as what happens when you stop pulling your tummy muscles in. I didn't even realise the rest of me was losing weight till my ring fell off at Sainsbury's check-out. I thought I was just going to be one of those old ladies with no waist and skinny legs. I'd forgotten all about my ovaries, Thought they'd shrivelled up to nothing years ago.

The most useful thing I've read is that it's unusual to develop IBS for the first time in later life. So many women with ov-ca first go to the docs with gastro-intestinal issues and they concentrate on those, when really it should be routine to run a Ca125 test as standard. Not conclusive, I know, but should be investigated if raised.

Everyone I know who was diagnosed at Stage 1 had gone to the GP for other gynae issues, but you don't have those in your 60's upwards, or if you do, you know that you should have them investigated.

[BarchesterFlowers]

to all.

TQ I hope you find somewhere nice to go away, I would love to be able to recommend where we are but I can’t!! weather is dreadful (ok, can’t do much complaining about that), our cottage has taken ‘rustic’ to the extreme (think rusty), five missing lightbulbs, escapee cows in the garden ( Aberdeen Angus no less), a welcome note from the housekeeper with ‘oops’ in it three times. She seems to think it is humorous, and has used the excuse that she is moving house !

Oh, and I had to re-wire the scart lead and reset the whole sky/dvd/tv to get anything to work. Honestly it is all a bit fawlty towers . Oh yes, I nearly forgot leaving the bottom of the car on the road here, we live down a farm track at home, but the holes in the road to this one are tremendous! Today I had to reverse down the single track coast road for a mile or so because of a land slide.

Enjoy somewhere warm, sunny and relaxing TQ !

P.s. no cycling!

[Mittens92]

Just read your story and I have so much admiration for you - you've remained positive throughout and I am just in awe to be honest! I wouldn't know what to do or what to say!

I agree that It does need to be made aware and doctors need to take note too! So many girls being told they're too young, and the most common shittiest diagnosis is.. IBS!! Take these tablets and it'll all go away! Absolute bullshit.

[Mittens92]

Wishing your a speedy recovery xxx

[TwitterQueen1]

Thank you for all the kind words. I'm collapsing at bit at the moment. It's all very well being brave and stoic and inspirational but I have no-one to support me emotionally on a 1st person basis. Friends and family have been great but I'm missing something I haven't had for years and years - that intimate relationship where you (Me) are number 1 above everything and everyone else.

I'm coming out of the whole chemo stuff and what I want right now is for someone to put their arms around me and say how marvellous I am, how brave I've been, how it's all going to be alright, how things will be different from now on.

It's a reaction to the normal CA125 reading I think. I'm trying to come to terms with wondering - do I still have cancer or not? Am I still a cancer patient? How do I think about myself? What do I say to people?

I'm beginning to let go but I don't know how far I can go. My next scan is 24 Nov. What happens if I let go now and think I'm normal again, only for them to say that the scan says it's come back again?

God, Sunday evening is a shit time for introspection.

[awishes]

You're not on your own, I know it's not the same but so many people on here are thinking you ARE marvellous and brave!
You are being so brave by telling your story to help others too. Keep going, accept the virtual hugs!

[WhatWouldLeslieKnopeDo]

Twitter

I find that too. My ex and I broke up during chemo the first time round, and he was actually pretty useless at supporting me. I’ve mostly been quite happy being single, and of course assumed I had years ahead to find someone. My friends and family are great. But like you say it’s just not quite the same.

I don’t have any useful answers about any of it. But sending love from a fellow single Pringle (my teen cousin tells me this is the current terminology )

[TwitterQueen1]

Thank you awishes. I don't know what's wrong with me today. I just need lots and lots of kind and loving virtual hugs. This is not like me but I'm struggling. I feel like I've been on my own (apart from you lovely lot) for so long and now things look like they're improving maybe I don't need to be quite so strong on my own any more.

[WhatWouldLeslieKnopeDo]

Have you had any sort of counselling or anything? Or support groups? There’s a Maggie’s centre in Oxford that has various stuff. It might help to talk to others going through similar.

[awishes]

Have you got anyone you can talk this through with tonight? Keep posting if not, it might be useful for you to look back on. Sounds like a great deal of uncertainty until the 24th, you're scared to feel any optimism. 💐

[TwitterQueen1]

Yes awishes I think you have hit on it. I am scared to feel optimistic. I've had months of trying to come to terms with the worst possible outcomes, of trying to accept the shit statistics and now I'm realising that maybe there is some hope after all. And hope is truly scary.

[awishes]

Scary but wonderful?
Tea and toast might help for a good nights sleep.
Thinking of you and I'm sure I'm not the only one.

[BarchesterFlowers]

How are you TQ? I hope you are feeling a bit better about things today.

It is hard doing everything in your own, being strong for your DDs, coping continuously with it all alone. I lived on my own until I was 36 and can honestly say that the only time I felt truly alone and miserable was when I was really ill with shingles one Christmas. Not in your league at all but I would have given anything for a hug and someone who really cared.

I hope you have found someone to talk to irl since you posted at the weekend.

How are your holiday plans coming along?

[TwitterQueen1]

Hi Barchester!
I thought I do was doing well not getting married til I was 34 but you beat me at 36! I've generally always loved being single actually - I very much doubt I will ever live with anyone again even if I do decide a partner might be a nice idea...

I'm feeling better tx. Final chemo today, Taxol only. 1st vein collapsed but the 2nd attempt worked. The nurses mentioned a line again but I'm not having one now. Half an hour or so every 3 weeks really doesn't warrant one IMO. And the veins are OK higher up my arms.

I'd decided on the Lake District for a short break the day before yesterday but have felt so fatigued I haven't done anything about it. It'll be a hike (I'm in south UK) but I don't mind that. DDs home for reading week this weekend so I'll probably wait til they've gone back again.

I have a couple of red, sore skin patches now. A few small mouth ulcers, a couple of fingernails are developing more black lines. Putting on weight because I can't exercise very much. I've had 2 naps today already. But generally I'm fine - I've finished CYCLE 6 YAY!

[BarchesterFlowers]

Really pleased you are feeling better and have finished another cycle. I hope the side effects diminish as quickly as they can.

Fab that you are making plans to go away. Will you drive there then? Are you up to that? I hope you are. Make sure you stay somewhere a) warm, b) with WiFi, c) with something to do not to far away (says someone who is currently on an island where the shop is an hour’s drive away). We have managed a decent walk most days but the weather is rubbish, really wet and windy.

[awishes]

Married at 34 too!
Can't imagine now ever having a partner again though.
Glad you've got through cycle 6! Still thinking of you.

[gonegrey56]

Hello again TQ, just checking in with you. So glad you have finished another cycle and are making plans for a break. I know what you mean over needing a partner but the loneliest I have ever been was in a marriage . We are here to help you and others with a virtual but genuine friendship . I have just been away for 10 days and managed to break my tibia , knew I should not go jogging, ran into hidden tree branch ouch .
Do think about a Maggies Centre visit if you can manage it .
And yay to reading week for dd3.
Thinking of you . I’ve just read Claire Tomalin’s revently published autobiography - she’s had a life with tragedies and challenges. Good read and a great distraction.

[TwitterQueen1]

Oh Gonegrey NO! ouch ouch ouch. What a bloody awful thing to have happened. I guess you're hobbling around in plaster.

Thank you for your kind words - and I know exactly what you mean about being loneliest of all in a marriage. I was too.

I'll take a look at the book too - I've just looked up the Guardian review.
I've just bought the 1st book in Elizabeth Howard's Cazalet Chronicles. I need some easy reading.

Full house this weekend. Orders are in for black pudding, meat, full English breakfasts and a ton of cake. Hmm so much for my healthy eating!