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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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Original poster
TwitterQueen1 · 19/05/2019 16:18

Thanks Pennina and Thymout

I don't know whether mets are all the same IFYSWIM. Melanoma is the cancer leading the way in treatments but I don't know whether that applies to all cancers... I don't know how big they are either.

The steroids may help reduce the swelling which may help with memory retrieval. They play havoc with sleeping but I have got some pills for that.

I'll be OK for not driving I think. I am getting PIP so that should help. It will help when I know what the plan is.... xx

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FabulouslyGlamourosFerret · 19/05/2019 19:56

That's rotten, I'm so sorry. I hope the rxt helps Thanks

JazzersMaw · 19/05/2019 20:37

Dear TQ, I’ve followed your story though rarely post anything but I wanted to say how sorry I am to read of this latest bit of news. I hope they sort your new plan soon. I think - but not absolutely sure - the treatment for brain mets will be similar regardless of primary site. Certainly for rads it’ll be as people have said, with the measuring session and the making of a shield to protect the unaffected areas. I hope you can push for some transport help as I understand rads to the brain are especially tiring and rads to other areas are bad enough, especially later in the course. I hope you can talk things over with a good friend especially while you wait to tell your girls. I just wanted to know you’ve got another person rooting for you. I’m afraid I can’t give physical support as I’m too far away but i’ll be thinking about you.

Original poster
TwitterQueen1 · 19/05/2019 23:24

Thank you so much Jazzers. I do appreciate the support. I'm still trying to get my head round it all. I can't bear to think of not driving again for the foreseeable.

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Original poster
TwitterQueen1 · 28/05/2019 13:07

The MDT has been very quick to action - I wasn't expecting a call yet but they've come through because the tumour size limit for stereotactic radiosurgery (SRS) is 3cm and I'm at 2.9cm. I'm praying it's stayed within the allowed limits otherwise it is likely to be whole brain surgery.

I'm up tomorrow for a chat through everything and then on Thursday for another CT and MRI and to make the mask. All being well, I will have 3 lots of SRS beginning 12 June. I hope they put a smaller cannula in next time - I've still got massive bruises from the last one.

I wish it wasn't quite so close to the max limit but they are going to proceed as if it is OK. Keep your fingers crossed for me....

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daciousme · 28/05/2019 15:35

I will certainly keep my fingers crossed - I hope all goes well and I'm glad things are happening without too much delay - but I'm sorry you are needing this treatment. Much love and comfort to you. (You have made some lovely blankets). XX

OverFedStanley · 28/05/2019 16:02

All fingers tightly crossed TQ

beeyourself · 28/05/2019 19:06

Everything crossed for you TQ

Pennina · 28/05/2019 19:16

Fingers crossed TQ, thinking of you. Xx

jollyohh · 28/05/2019 20:53

I posted in your first thread too. So sorry as will be keeping everything crossed for tomorrow Thanks

LiliesAndChocolate · 28/05/2019 21:51

Fingers, legs, toes, arms, everything will be crossed for you.

Brassica · 29/05/2019 04:51

Just seen this TQ - very best wishes from me too for both appointments. Hope there is someone able to go with you for moral support and note taking etc. So hard to process and think of everything you need to ask when you’re on the spot. Good vibes coming your way.

Toofaroutallmylife · 29/05/2019 08:45

Hope today goes well TQ x

Original poster
TwitterQueen1 · 30/05/2019 16:02

I had my mask made today - they are still proceeding on the basis that I will be able to have the SRS, which is good. They put on a back piece and 2 front pieces, which start off warm and feeling like a lovely head massage, and which then cool into plastic. It's like a Phantom of the Opera thing Smile.

CT scan (with the mask on ) and then MRI with it off. I will find out on Tuesday pm whether or not I have it. Otherwise I will move hospital back to the Royal Berks because it will be 'standard' whole brain RT.

Bloody bloody steroids. Can't sleep, look crap, feel crap. But they are keeping the swelling down, which means a better chance of SRS. Sleeping tablets only get me about 4.5 hours a night so might need some stronger ones.

Will tell the girls this weekend.

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Toofaroutallmylife · 30/05/2019 16:29

Glad to hear it’s all still progressing to plan- long may it continue that way.

LiliesAndChocolate · 30/05/2019 20:49

If you can't sleep, the day is starting in Australia, it is 5.45 am, so happy to chat, if you are fed up with whatever you do during your sleepless nights.
I am waking my youngest now to taking him to swimming training. Crazy boy, it is 8 degrees outside, an old pool (like everything else in Australia) that never really heats up, but he loves it.
I am French, still feeling a bit lost in Australia after 5 years, but I can find Roquefort - the most misunderstood cheese of all - so life is not too hard. I know you like it too, I remember reading it in one of your posts months or was it years ago.

Talk to you soon if you want too. I am waking him up now.

Original poster
TwitterQueen1 · 30/05/2019 21:44

Oh thank you Lilies Smile
You remember well...., there is no finer cheese than Roquefort. Accompanied by red wine. I have rediscovered my taste for alcohol, which is nice Wink

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LiliesAndChocolate · 30/05/2019 22:40

I like it in a witlof salad with a couple of walnuts!
Sometimes here at dinner I put a piece on a board and every time, the reaction is, oh it is like Stilton! No way! It is not!!
I am not a wine drinker or a drinker full stop, never got a taste for that, even if I have to say, a dash ( or 5) in the cooking pot makes all the difference!
If you are into reds, may I recommend the Sangiovese? It is from my husband’s region in Italy and everyone loves it when we serve it. In Italy it is a very cheap, table and family wine, here it costs a fortune !

LiliesAndChocolate · 30/05/2019 22:42

I am now parked outside the pool to pick him up and drive him to school. So if not answering straight back it means I am driving

Pennina · 03/06/2019 22:01

Hi TQ, just popping on to wish you good luck tomorrow. Hope you've had some nice Roquefort and wine! Glad to see you're enjoying that combo again! A cashew or two too perhaps?!

Thinking of you

Px

Gonegrey31 · 04/06/2019 10:53

Another one thinking of you today x

nakedscientist · 04/06/2019 11:02

All the luck in the world to you.

Flowers
Original poster
TwitterQueen1 · 04/06/2019 18:08

Finally heard that that the SRS is going ahead!!! I cannot begin to say how happy I am to hear that the tumours have not grown in size. I rang twice and waited and waited but apparently they rang the land line, which I never answer. Anyway, the swelling has reduced and I am OK to go ahead provisionally on the 12th, 14th and 17th June.

I am so grateful that this treatment is available to have at the Churchill and for all the work that is going on behind the scenes that is tailoring this just for me. For those interested, here's a clicky link that tells you a bit more about it.

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OverFedStanley · 04/06/2019 19:07

Grin fab news TQ

LiliesAndChocolate · 04/06/2019 20:02

Fantastic news!!!!1 What a relief! Very happy for you!

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