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Original poster

Fat belly? No. Ovarian Cancer Belly (part 3) still going!

371 replies

TwitterQueen1 · 25/07/2019 13:10

This is the story of my ovarian cancer discovery and treatment from March 2017 to now. I hope it proves informative / interesting / thoughtful ... and most of all, perhaps make someone think 'actually I need to go the doctor about this and not just assume I've got a pelvic floor / weight problem'.

I am not having treatment - I was on an early phase trial with olaparib and cedirinab, which was going well but the doctors discovered brain mets in May, and after targeted radiotherapy there's not much else they can do.

I'm recently home after 3 weeks in hospital with pneumonia and sepsis so I cannot promise any exciting tales (except falling over). I moan a lot about steroid-induced diabetes.

Happy to hear any terrible (or good) jokes, rants, raves, anecdotes. I was/am a woolly hugger but can't do anything right now.

Here is part 1

Here is part 2

OP posts:
Thread gallery
5
PrudenceDudence · 04/08/2019 21:24

Hi TQ,
I’ve recently read through your threads from the start and just want to say how sad I was to read the more recent posts. You and your girls are in my thoughts.
Pru xxx

Emptyspacex · 04/08/2019 21:39

How are you doing tq?

Original poster
TwitterQueen1 · 05/08/2019 10:42

Apparently I'm suffering from steroid withdrawal; weakness, fatigue, nausea, abdominal pain and bloating. I don't understand why I wasn't warned about all this beforehand. I've been feeling dreadful - weepy and all of the above and thought it was an inevitable part of the cancer. If I'd known this was typical I could be dealing with it more positively.
Same with the diabetes - I was given information after the fact and only when I pushed.
It's a very reactive and passive way of nursing - it's also unnecessarily frightening.

OP posts:
flyright · 05/08/2019 12:46

That's such a good point TQ. You feel so differently about something if you know it's to be expected.

I lost you in thread 2. Pleased to be back.

Love to you all. My DD who worked in a stables just critiques my brush technique so be grateful for small mercies.

Brassica · 05/08/2019 14:46

Hi there TQ. Just catching up on your new thread. Sorry to hear about the latest nasty side effects and it doesn’t sound at all helpful that you’re not getting more proactive information on what to expect, I can imagine it’s alarming and makes your mind run overtime. Maybe Macmillan could be of assistance here if you have questions on what you’re going through?

Wintersnowdrop · 05/08/2019 16:22

Hi TwitterQueen1, I’m glad you have updated, I’ve been wondering how you are. The side effects of withdrawal sound awful but hopefully they will lessen? And diabetes is another complication that makes things difficult. Thinking of you and sending lots of love. I really hope that the side effects lessen and you are able to have some respite from feeling so rotten.

Bloodybridget · 05/08/2019 18:07

Hi TQ, very pleased to hear from you, although sorry that you have been feeling so awful. That is a horrible list of side effects and it is bad that you didn't know to expect them. I hope the withdrawal phase isn't too long. Have you been told anything about that now?

iVampire · 05/08/2019 19:01

Sometimes they get it so right; sometimes so wrong.

It’s so unfortunate that something that should be straightforward (side effects info) was missed

I hope they’re easing

MilesJuppIsMyBitch · 06/08/2019 07:26

Steroid withdrawal is tough: I suffered last year.

My nurses seem to take the tac of not telling me things, in case I worry. Well-meaning, but given that I like to prepare it's very annoying.

It makes you feel like you're going mad, doesn't it.

Are you completely off the steroids now? That must be a relief.

Original poster
TwitterQueen1 · 06/08/2019 15:06

I'm 8 days steroid-free, which is good, but of course I'm still recovering from the sepsis and pneumonia and my Brain Trust Fatigue Book says the effects of brain radiotherapy can take some weeks to kick in. And there's still the primary OC of course. Basically, I'm buggered. Sad

The RT didn't kill the brain tumours - I am having the occasional flash of pain in my head and increasing pins and needles, especially in my hands, feet and left leg.

This cancer shit is no fun is it?

OP posts:
Mrstraveller · 06/08/2019 23:18

Sorry you are feeling so shit TQ xx

Bloodybridget · 07/08/2019 06:17

TQ, your cancer shit is particularly shitty. I wish so much that something could get better for you, or that I or anyone else here could do more than listen and offer sympathy. But thank you for updating the thread - and for all the support you have given me and others.

SnowsInWater · 07/08/2019 06:31

Yes cancer is shit and it sounds like yours is causing you extra grief just for the hell of it ☹️ Take care x

TheTurnOfTheScrew · 07/08/2019 10:15

sorry things are so crappy TQ. bollocks to it all.

Abraid2 · 07/08/2019 11:59

I'm sending the most positive vibes to you, TQ, and hoping very much that you are feeling more comfortable and enjoying what looks like a reasonable day, weatherwise (so far).

Original poster
TwitterQueen1 · 07/08/2019 21:29

I'm back in hospital tomorrow for an overnight stay to have my stomach drained because of ascites. I've been in such pain today and cried all over the district nurse. Hopefully I'll be out for my birthday..

OP posts:
Proseccoinamug · 07/08/2019 23:03

Oh TQ, it sounds utterly shit. I hope you can come home for your birthday. I think of you daily and wish I could do something.

getupgonow · 07/08/2019 23:24

I'm sorry TQ, it sounds really hard. Hopefully they'll get you sorted ASAP and you'll feel better for it.

Schuyler · 07/08/2019 23:32

I have changed my name very many times but was one of the first posters in your thread. I’ve always admired your attitude. You are one tough woman but it’s always good to have a cry. It’s shit and there’s nothing anyone can say to make it better but I do hope you get home for your birthday and eat cake.

Honeyroar · 07/08/2019 23:38

I've been following your threads for the last year. My friend was close behind you on the journey and you've helped me so much. Sorry to hear you're suffering a bit, I hope the stomach drain releases it a bit and that they can find adequate pain killers. Parecetemol seems to work well for my friend (amongst other things).

diege · 08/08/2019 00:05

I've been lurking from the start and just wanted to say, as many others have, how much your posts have helped me when dealing with my own daughter's cancer diagnosis. I think about you a lot and am in awe of you and how courageous you are.
I really hope the hospital procedure brings you some relief and that you are home for birthday cake on the big day! Xxx

Walnutwhipster · 08/08/2019 01:25

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Doubleraspberry · 08/08/2019 08:36

I’ve been a random poster since the start and I am so sorry you’re feeling so poorly. You’re a super star and I hope you get to have a lovely birthday.

Paddy1234 · 08/08/2019 08:39

TQ - I have been lurking from the beginning
❤️ it would be so lovely if you could get out of hospital for your birthday

Abraid2 · 08/08/2019 08:52

We will be raising a team to bust you out of hospital if necessary. 💐