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Original poster

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

996 replies

TwitterQueen1 · 24/09/2017 19:37

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.

OP posts:
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Original poster
TwitterQueen1 · 20/08/2018 21:37

Yes, same here Gonegrey. Sad I find it hard to bear.

I have my 'work assessment' meeting tomorrow Angry. They seem oblivious to the fact that a terminal dx means I will never work again.

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Applesandpears23 · 20/08/2018 21:47

Don’t give up hope. My mother was diagnosed terminal 7 years ago now. My sister and I cried that she wouldn’t see our children. Well I have had two and my sister one so far and Mum is still knitting away. It is a funny old disease.

Original poster
TwitterQueen1 · 11/09/2018 18:33

Hello everyone! I hope you've all had a good summer and are refreshed for the autumn. This is my favourite time of the year because it's the most exciting! Halloween, Guy Fawkes and then Christmas of course.

I have been having pressure and mild pain in my lower abdomen for some weeks now, along with a couple of UTIs (or one long one). It's most noticeable when I'm driving or sitting upright. So I contacted my onc nurse and I'm booked in for a scan on Thursday this week. I had bloods done on 24th August and my CA125 was up from 69 to 104 so it's pretty obvious that the cancer is growing again. My next consultation is 24th Sept so I'm assuming I will come away from that with a plan for next steps.

I knew it was inevitable and I've had a lovely summer without treatment (though the heat has been hard to bear). U've got another fat belly but again, I don't know whether it's ascites or just plain old fat. I'm doing bugger all day-to-day as I don't have the strength really to do a huge amount so it's probably too many calories.

I've been round the houses with Universal Credit, ESA and PIP (which has been refused but advice provided from a very nice lady has told me what to do now). I am EXTREMELY fortunate in having a health insurance scheme via my employer, which, along with DCs moving out & graduating, has meant I do not have to worry too much about finances. This is such a relief - I am so very grateful to my company.

I'm still wondering about some kind of holiday but since I haven't actually done anything about it all summer I probably won't get round to it. I prefer being at home. I feel safe here.

I'll be back!

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miketv · 11/09/2018 19:37

Hello TQ (name changer here) - sorry it's looking like the cancer is returning, I'd hoped it would be much longer before that happened (as I'm sure you did). Glad they can get you in quickly though - will it be an ultrasound or ct scan? Do you think they'll give you any indication if what's happening there and then?

I'm glad it's been a good summer and your finances look manageable. Please let us know how you get on.

Gonegrey31 · 11/09/2018 21:28

It’s always lovely to hear from you TQ I’m just so sorry to learn that you may need more treatment. Will be thinking of you on Thursday.
I’m incensed re your difficulties re PIP etc . I know that Maggies Centres are really helpful in sorting out all the bureaucracy. Maybe a phone call to a nearby one ? There is a great one in Oxford and perhaps another closer to you . Get them on the case . Why should you have to jump so many hurdles when you have so many other appointments etc quite apart from coping with ill health .
Take it gently and enjoy trips out but from a home base . Feeling secure and safe at home sounds good to me . Sending warmest of good wishes to you x

Original poster
TwitterQueen1 · 11/09/2018 22:43

Hi GG and Mike I won't be told anything at the CT scan. The operators aren't specialised so they simply do the job (after anxious pleadings from me to inject the dye slowly because I've had burst veins on previous scans, which means the dye goes into muscle and I end up looking like Popeye...)

Oxford is close to me but I think I know what to do now Wink.

How are you GG?

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2018SoFarSoGreat · 12/09/2018 04:19

Hi TW. Glad you are being seen soon. Better to know what you are cooking so you can plan the next attack. I am delighted to hear the money won't be your biggest concern but hate that you are getting the runaround. Sounds like you have a plan though. A plan is a good thing.

ScarlettSahara · 12/09/2018 18:56

Hi TQ,
So sorry about the latest development. I am prone to UTI’s / cystitis & I know you will be more vulnerable to them & have to be vigilant about reporting symptoms in case they signify tumour obstruction but also I have found that taking high dose probiotics at the first symptoms can alleviate matters & avoid antibiotics. I figure that waiting a few days won’t harm me unless I have a fever & chills in which case I ask for an emergency appointment same day (risk of sepsis).

My DD loves this time of year too. She loves the Autumn leaves & pumpkin spiced latte!

Have you got a friend whom you could have a day or two break with for a change of scene (thinking a real luxury spa break).
Thinking of you

miketv · 12/09/2018 19:11

Good idea Scarlett- TQ what about the spa at center parcs? Some of them you can stay at the spa and have a couple of days - I love those places!

Original poster
TwitterQueen1 · 13/09/2018 08:13

Oh yes, I like the spa idea thank you. I had a half-day in one over the summer (birthday treat) and it was lovely - especially the massage. I'll probably wait until after my consultant appt though. I realised last night exactly how shit scared I am and I know I'll feel better when next steps are confirmed.

High dose probiotics - got it. I'll investigate that.

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miketv · 13/09/2018 08:17

Sounds wise TQ. Hope scan goes without a hitch today,

Gonegrey31 · 13/09/2018 09:26

Virtual hand hold for you today TQ, we are all with you Flowers

Original poster
TwitterQueen1 · 13/09/2018 11:19

Thank you. Last night was not a good one.

However, all done and dusted now, though I have a warm fanny and a metallic mouth..... Grin

And now I wait...

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ScarlettSahara · 13/09/2018 12:01

Hope you can find things to distract you TQ - Gilmore Girls on Paramount in the mornings & Friends on channel 5 might do it.

Brew -pumpkin spiced latte for the metallic mouth. No suggestions for the fanny umm -enjoy possibly?! (side-effect of contrast injection?)

Original poster
TwitterQueen1 · 13/09/2018 12:14

yes Scarlett ROFL at your polite uncertainty on this one Grin Grin. The dye injection makes you feel as if you might have wet yourself... it is very localised to the fanny (UK not US) region... nowhere else. No idea why.

Shame it's too early for gin. A pumpkin spiced latte isn't thrilling me...

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WhatWouldLeslieKnopeDo · 14/09/2018 08:48

I always miss your updates here as it keeps falling off my Threads I'm On Blush

Sending a big handsqueeze for the being shit scared. That's understandable. Let's hope they have an excellent plan for you on 24th.

There's a spa round your way that does cancer friendly treatments. Me and my mum are going some time soon (was waiting for my manky toe to heal up so I didn't have to wear my rubber swimming sock!) so I will report back :)

Original poster
TwitterQueen1 · 14/09/2018 09:53

I suspect that's where I went for my birthday treat Leslie. I had a back massage and we lolled around the pool / jacuzzi / wet room / sauna for the afternoon. It was fab. I felt marvellous afterwards. You will enjoy it.

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WhatWouldLeslieKnopeDo · 14/09/2018 11:12

Ah probably. Sounds lovely :) I always feel really healthy at a spa!

Pennina · 16/09/2018 08:35

Thinking of you TQ. It's never too early for a gin x

Gonegrey31 · 24/09/2018 06:19

Big hand hold for you today TQ x do you have anyone going with you ?

GhengisCalm · 24/09/2018 06:21

Good luck for today x

crabb · 24/09/2018 06:31

Have been following quietly TQ, all the best for today.

Pennina · 24/09/2018 09:32

And from me too xx

Original poster
TwitterQueen1 · 24/09/2018 14:31

Thank you for the good wishes. It wasn't good news but I knew it wouldn't be.
The cancer is progressing again so I will be starting chemo soon. I'm being referred to Oxford first though because they may have a suitable trial I can join. My consultant said it was worth going for a chat to see a) if there is anything and b) if I want to do it. It will be weekly chemo (Taxol aka Paclictaxel + potentially something else) so it might be too much in the way of blood tests / monitoring etc. Oxford is a complete pain to get to by public transport - I don't think I could drive because the anti-sickness meds make me sleepy.

It'll still be weekly if I stay at my current hospital but it's a lot easier to get to.

So I'm moving on to the next inevitable stage Sad. I've got a few weeks' grace before I start (unless things get worse beforehand). There's just nothing I -or anyone else - can do about it.

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donajimena · 24/09/2018 14:42

Hi Twitter I posted on your last thread to thank you for raising my awareness of ovarian cancer. I'm so sorry to hear its advanced. My friend is at this stage now (different cancer) and its utterly shit so I won't offer you a platitude. May you have many more enjoyable days among the ones that will inevitably be shit.
I hope you get the PIP and ESA sorted.

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