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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.

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Thread gallery

Original poster

TwitterQueen1 · 04/12/2018 18:23

I have my dates confirmed! 14th December for the trial consent, bloods, CT scan, echo etc. 27th December for first chemo (there has to be a max of 14 days between pre-screening and the start of treatment). I'm glad it's all sorted, I didn't want to leave it any longer because I know my lungs are affected and I don't want to let that to get any worse than it needs to.

So I'm going to relax and enjoy Christmas now , though sadly I'm struggling with the red wine (one of my greatest pleasures...). I couldn't even manage one glass last night - just didn't feel like it. But hopefully I can still manage to enjoy gorgonzola and cashews...

I've never liked New Year so I'm perfectly happy to have an excuse to dip out of all and any invitations and tuck myself up in bed early (steroids permitting).

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Original poster

TwitterQueen1 · 04/12/2018 18:24

I still don't know which arm of the trial I'm in though... I will be so very disappointed if it's Taxol only.

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Gonegrey31 · 04/12/2018 22:37

I’m relieved you have a firm timetable now and it is great news that you have s quick breather over Christmas.. I have regular echos for my heart and the procedure is fine, nothing to be worried about at all.
So so hoping you get on the trial you want, wish we could all lobby for you ! Sending the warmest of good wishes . Love your tree btw, how organised you are

nicoala1 · 05/12/2018 16:52

Wishing you the very best TQ.

I know the road and journey you are on so well.

. You are a legend. And may you have a great Christmas break too.

Original poster

TwitterQueen1 · 05/12/2018 23:04

Tx nicoala1 I'm sorry you've had the same trials and tribulations.

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Pennina · 10/12/2018 09:32

Hey TQ, how are you today?

I just realised you're a fellow hooker! I'm very very keen, I've always got something on the go. I was looking at the boards as a dear friend sadly lost her baby (he lived for a few months in a hospital environment) and she asked me to make one of those octopus things that are apparently incredibly therapeutic for early or very poorly babies. Looking forward to making one of those.

I also gave a dear friend with pancreatic cancer, Who is having her second round of chemo this week and I can feel I lovely soft cashmere beanie coming along too for her.

In between that I making a very tough jumper out of very warm Shetland wool which I'm going to wear when out on cold walks or in the garden or stables with my horse.

Next will be a couple of baby blankets for forthcoming great nephews or nieces

I recently started to try and learn to knit to so after the current flurry of projects, I might well try my hand at some nice squares for the woolly hugs projects.

P xxx

Original poster

TwitterQueen1 · 11/12/2018 12:00

Hi Pennina!
I am indeed a hooker! I used to do it loads when I was in my teens - but not since then. I received a lovely Woolly Hug last year when I was having my first chemo and I love it! I don't knit though, or make anything fiddly or that needs sewing as my hands are too shaky but my crochet keeps my mind distracted and I do enjoy it - I just do blanket squares - currently doing a Candy's Hug - I'm about halfway through. xx

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

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Pennina · 11/12/2018 17:24

Wow that's beautiful!

Same here - I was mad keen as a teen. I took it up last year, I had appendectomy then pneumonia so wanted something to do while I skived convalesced! I've made a lot of slouchy cashmere beanie hats, hand warmers, baby blankets etc. I'm currently making myself a pure wool jumper in mottled blue Shetland wool. Last winter I made myself a hat and scarf and gloves out of that wool and it kept me so warm while at the stables doing jobs that I thought I'd have a go at making a jumper for wearing up there as well or four gardening and stuff.

Here is a quick peek of a section. Stitch is one treble then one double.

I really fancy trying Tunisian crochet!

Gonegrey31 · 13/12/2018 15:26

I will be thinking of you tomorrow, and do hope you get onto the trial that you want. Wish I was in a position to bring influence to bear .
for you in the interim

Original poster

TwitterQueen1 · 14/12/2018 16:28

I didn't find out which part of the trial I'm in unfortunately. Apparently the medics send the results of today's screening to the powers that be and they put me in a group. I can't believe the hospital team don't have some influence over the allocation though, and I've made my preferences very clear. I'm sure everyone wants to be in the 'full whack' group.

3 goes to get the cannula in, but strangely I found it better when the nurse got the vein scanner out! I've not see one of those before. It's quite weird seeing your veins but I was sufficiently interested to be less freaked out by the process.

Echo was done and dusted very quickly - I thought it would take longer. Again, weird seeing your own heart pumping away!

Blood pressure was ridiculously high (176 over something), which caused a few raised eyebrows and repeat readings but I did say that if someone would massage my shoulders it would be a lot lower!

Now I wait for the phone call for the final approval.

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Gonegrey31 · 14/12/2018 17:32

Gosh what an ordeal and a trying day for you . I’m not surprised your blood pressure was so high, only to be expected. I’m sorry the wait goes on for you . I think a large glass (or 2) of wine and some cashews are in order. X

Original poster

TwitterQueen1 · 14/12/2018 18:10

I'm on it GG x

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tobee · 14/12/2018 18:27

👍

tobee · 14/12/2018 18:27

To the cashews!

Pennina · 14/12/2018 21:47

To the wine!!

Original poster

TwitterQueen1 · 15/12/2018 14:18

I've just got PIP confirmation! And back payment to August. Such relief!

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Gonegrey31 · 15/12/2018 18:20

About bl**dy time, excuse my language but you have been treated appallingly by the system . So pleased for you ! X

Pennina · 16/12/2018 09:49

Oh TQ what good news - so pleased to hear this came through. Hope you're having a good weekend xx

WrongSideOfHistory · 17/12/2018 08:24

Brilliant news on PIP - although it should never really have been in question.

Original poster

TwitterQueen1 · 17/12/2018 09:13

My formal complaint last week met with the response that it's "not their policy to tell you if you've been rejected for PIP1", and completely failed to mention the 4 month delay, which is absolutely ridiculous. I spent 1.5 hours last week penning a suitable reply - which is now going in the bin!

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Original poster

TwitterQueen1 · 19/12/2018 16:40

More great news! I've just been told I'm in the trial group that includes both olaparib and nirparib - Christmas has definitely come early . Also, the research nurse said that Taxol is not included in this group, which means no IV, no PICC line, no hooking up to a machine etc etc, so obviously I'm delighted about this too. But this contradicts what I was told previously, which is that Taxol is included in every group.

I'm not going to get too worked up over that though - if I have to have it, fine, if I don't, that's fine too. Very pleased.

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Fightthebear · 19/12/2018 17:02

That really is great news!

I was on your first thread (under a different un) but what an upturn for Christmas. Olaparib trial group AND your PIP resolved AND you have the parking sorted.

This sets the scene for a lovely Christmas