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

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TwitterQueen1 Sun 24-Sep-17 19:37:08

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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TwitterQueen1 Tue 26-Sep-17 11:24:50

Mids I don't think I've gone into detail on the debulking - not sure how much there is to tell. Basically I had chemo to reduce the size of the mass (24x20x14), then a laparoscopy to see if they could operate, and then the debulking/hysterectomy, when they cut out everything they could see on the liver, small bowel, diaphragm and stomach lining.

Happy to answer any questions on this.

Jostandford Thank you for the info smile. I have already volunteered to be 'voice' and my 1st blog is with OCA. I'm hoping it will appear somewhere soon!

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hellhasnofurylikeahungrywoman Tue 26-Sep-17 11:27:39

Glad to see your story being told, I was on your original thread and am glad to see you doing well, long may it continue.

TwitterQueen1 Wed 27-Sep-17 17:39:33

For reasons known only to those that made them, bloods are now being sent to a different hospital for analysis, which meant the results hadn't been received when I got to my treatment hospital today. Same for others too....

So I waited 1.5 hours, then had more tests, then waited another hour or so for the results. Then started the chemo. It was supposed to be a 'quick' week, ie only Taxol today, not the full cocktail.

On the upside, I was given another beautiful blanket (the lovely woolly hugs people sent me one earlier this year). It's very pink and white and snuggly. Another lady got one too. The nurses said they can't keep them because they can't wash them (elf & safety), I got to bring it home. grin

DD3 rang last night to request instructions for roasting a chicken. I understand it was a success and she threw in a few sweet potatoes for good measure too. She's having to WRITE HER NAME IN LARGE LETTERS ON HER FOOD in the fridge because the boys keep pinching it....

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WhatWouldLeslieKnopeDo Wed 27-Sep-17 17:57:25

Oh the joys of random hospital admin changes! Sorry you were delayed so much. Enjoy your new blanket smile

TheFarSide Wed 27-Sep-17 18:53:40

Message withdrawn at poster's request.

LazySusan11 Wed 27-Sep-17 18:58:11

I’m so pleased to see people taking about this and raising awareness, had we been aware my mum would probably not have died of ovarian cancer earlier this year.

It’s so important that awareness is raised so thank you for starting this thread and I wish you much strength throughout. flowers

LazySusan11 Wed 27-Sep-17 18:58:32

Talking not taking

TheFarSide Wed 27-Sep-17 19:22:59

Sorry - posted in wrong thread - will get it deleted ^

TheFarSide Wed 27-Sep-17 19:48:16

Wrong thread! Have asked MN to delete. Huge apologies.

cricketbat Fri 29-Sep-17 17:53:01

Hey TQ well done on raising awareness of this disease. I've been lurking on your thread and wishing you well. Just so you are aware we all use the same wool for the Woolly Hugs blankets and it is washable and shouldn't shrink either. I'll try and send a photo of a label for you.

cricketbat Fri 29-Sep-17 18:00:42

Here it is...I hope! My rubbish internet won't load a photo, so here is the info anyway!

Wash Care:Machine Wash at 40 Degrees C, Cool Tumble Dry, Cool Iron, May Dry Clean

girlwhowearsglasses Fri 29-Sep-17 18:00:56

Can someone write the briefest of summaries because I followed your last thread and I know it was long and upsetting as the diagnosis revealed itself and we all felt terribly for you. So glad to see you on here OP

BarchesterFlowers Fri 29-Sep-17 18:07:21

TQ flowers, just saw this in active - had lost you ..... again.

Hope you are doing ok, it is really great that you have become a voice.

You already know that it was because of you I actually went to the doctor. Had surgery last week, bloody painful still atm but am expecting benign results. Am counting down the hours between painkillers atm, I must have a low pain threshold!

Still, whatever, I would probably still not have gone if it wasn't for your OP/first thread.

I thought Cricket had got the wrong thread blush when I saw it in active!! Have you got a woolly hug?? How lovely if you have.

TwitterQueen1 Fri 29-Sep-17 18:08:33

Thanks Cricketbat
Sorry if I've confused you - I'm OK with washing blankets, it's the hospital that isn't. I think they can only cope with boil wash, which would have completely ruined the one they gave me.

I'm feeling pretty good right now. I have a weekend to myself and I'm going to tackle things I haven't felt able to for months - all very boring - cleaning the fridge, a little weeding and planting of new potentillas in between the acers. For me this is a welcome sign of normality, despite the weekly ongoing chemo.

What I am finding weird is dropping off everyone's radar. People have stopped calling in for coffee, emailing, texting, ringing etc. In my head I still have cancer. I'm not cured yet. Even after I finish cycle 6 I will still be on 3-weekly chemo for some months. I'm not better (yet). But people seem to think I am.

I've had the "But you look so well!" "You don't look ill at all!" comments again. Oh so helpful. It's as if they a) don't believe me and/or b) are completely minimising cancer. Well.... you can't really be ill at all can you, looking like you do...."

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FabulouslyGlamorousFerret Fri 29-Sep-17 18:15:30

Hello Twitter Queen, I followed your story on your last thread. I'm sorry your support network seems to be tailing off - apparently (according to my Macmillan nurse friend) this is absolutely classic and is when their counselling services are often requested.

If it helps an ex colleague had OC, stage 3 or 4 from memory and is doing really well (5 years later).

I hope this weekend involves nice food, a tipple and a good laugh with some pals, even if its only on Mumsnet!

TwitterQueen1 Fri 29-Sep-17 18:16:12

Ohh! people are back! Hello Barchester! sorry to hear you're in pain. It does get better. I have the most amazing zip line from in between my boobs right down to the nether regions.

Girl - summary
fat stomach in February revealed as 8 litres of fluid + large ovarian cancer mass, affecting lung, stomach lining, bowel and liver in March. Chemo to reduce size of mass before operation. Laparoscopy followed by radical hysterectomy and debulking (cut out all visible cancer) on 7th July. Followed by renewal of chemo on 30 August. Part of a trial group, on weekly chemo. Going bald again! toenails falling out. Working full time.

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BarchesterFlowers Fri 29-Sep-17 18:44:05

grin - Lovely to hear you are feeling good.

How are you managing to work full time? That must be knackering.

Brenna24 Fri 29-Sep-17 19:43:32

You are amazing, managing to work full time on top of chemo and supporting your lovely girls. That is sad that your friends have dropped off. When my friends were having chemo that was when they were at their most tired and in need of a hot meal/loan of some dvds/ear to bend etc. They weren't always well enough for guests but even 5 minutes dropping off some food and a dvd and taking away a load of washing was appreciated.

TwitterQueen1 Fri 29-Sep-17 20:24:15

I'm very fortunate in being able to work from home all the time. I work for a very large global IT company where this is encouraged for carbon footprint reasons in particular. Also, my role is a European one, so although I could go into the nearest office there wouldn't be much point as my team members are in Denmark, Czech, France, Germany, Scotland etc etc, so we do all our work by phone / Skype. The company is also very accommodating and understanding. I don't think I'd be able to get dressed up and travel the M4 every day.....

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Popchyk Fri 29-Sep-17 20:41:23

Hey TQ,

I was on your previous thread from the start, as you were wondering why you'd put weight on your stomach but nowhere else. Thank God you went to the doctor when you did. I remember you talking about that daft demanding mare in the bed next to you in the ward when you were first admitted. Seems so long ago now.

So glad to hear you are feeling good at the moment. Sounds like your lovely clever girl is doing well at university.

oldlaundbooth Sat 30-Sep-17 01:20:57

Crikey TQ think it's fair to say you've been through the mill!

Just read your entire thread, what a time you've had of it. You're truly a trooper.

Glad you're feeling better, and glad you're getting plenty of support on here.

Huge thanks for actually posting updates, keeping these threads going and highlighting OC - as you say it's a silent one that women need to know about.

nickyplustwo Sun 01-Oct-17 01:15:17

I'm glad I found you back on this thread and that treatment is going ok. I'm back in weekly chemo (Taxol only this time); like you I'm functioning ok but the weekly business is pretty relentless isn't it? I couldn't agree more about greater awareness of the symptoms of OC; I went to the dr as soon as I had anything tangible (ascites in my case) and I was already Stage IV and I've racked my brains since to think of what I didn't notice. What has shocked me is how many people have asked me why I didn't have smear tests (I did) and think that OC and cervical cancer are the same thing. Like you say, I hope yours is a good, long story x

TwitterQueen1 Sun 01-Oct-17 10:19:54

flowers for everyone for the support and positive thoughts. It all helps. And I'm going to keep on and on and on...

Nicky yes, I do find weekly chemo relentless. I volunteered for it to be eligible for the bevacizumab but it's bloody hard.

Tired today. Too much housework yesterday. Plus 5th day on my own. I think I'll go for a walk and dognap a bouncy, happy bundle of fun.

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BarchesterFlowers Sun 01-Oct-17 10:34:16

Being on your own is tough TQ, I like my own company but working from home when DH worked away for weeks/months on end was hard.

With all this going on, mentally and emotionally as well as physically you will be finding it hard, being on your own that is.

Are you seeing your Sister and the pup? I can’t remember how far away they are without finding and looking at your original thread.

Good that you feel like a walk though, I am going to try for a walk today, haven’t left the house since I got home from hospital.

TwitterQueen1 Sun 01-Oct-17 10:47:26

Barchester when I got out I walked along the pavement outside my house every day for a few minutes just to get some air. I'm assuming you're on the blood-thinning injections too? I was determined to keep moving and it helped with confidence too.

Don't know about you but one of the most unexpected and debilitating effects of all this crap is losing confidence in myself. Can I get into and out of the shower? Can I walk that far? Will it bleed? Will it hurt?.

Sis is only around 20 mins away but with us both working it's not easy to meet very often and now the DDs are away it's not so entertaining for the dog!

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