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

[TwitterQueen1]

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.

Oh my goodness.... I took myself off to the cinema this morning to watch Bohemian Rhapsody and came out a bit of a sobbing wreck! I don't think anyone who wasn't there first time around understands just how iconic bands like Queen were. They were incredible. No social media in those days so they were remote, exciting, exotic, superstars.. I saw them in concert in Wembley once...

Rami Malek 100% deserved his BAFTA. His performance was amazing.

I got emotional as it took me back to a time of innocence, when dreams were still alive and anything was possible. Ah nostalgia...

Yes I still love cashews Scarlett

Hello TQ, I had exactly the same reaction to the film. I was working in Whitehall the day of Live Aid and was furious about missing it. My Ministers and senior colleagues didn’t know what all the fuss was about. But I so wanted to be at Wembley ....
Watch the Wembley set on YouTube, it’s just fabulous. What a star Freddie was and what a tragic loss. My dd was in a school production of We Will Rock You, and she was bemused to realise that I knew all the words of the songs she was learning !
Hope you are ok, how are the hands ? Glad you have some new doggie friends too. Take care x

I've been waiting to go see bohemian rhapsody with my daughter, we've talked about it and hope to go half term. Scarlett, I didn't know I could ask to be referred for genetic counselling, the gp said when I asked a few years ago(my mums insistence) as it was on my dad's side, his mum and his sister, that there wasn't considered to be a link so off I trotted and then other stuff happened family health wise so put in on the back burner.

Back to Queen, I didn't appreciate them until recently. Considered them a rock band but there was so much more to the band than that, musical geniuses. I get shivers when radio gaga is on the radio and Freddie hits the high notes. I'd like to think his memory will live on through their timeless music.

Hi TQ - your thread had disappeared from my watchlist. Sorry to hear about the CA125, hope you're able to talk to someone about it & your next scan puts your mind at rest.

I also felt the same after watching bohemian rhapsody- queen were a huge part of my teen years.

Hope you're doing ok

Back from the two-month review with less information than I'd like really. My consultant said he'd look into the rise in CA125 reading - I'd hoped he would have done that by now. My CT showed a slight reduction in size in one tumour; the other one had disappeared but a new one had developed very close by.... The consultant's view is that it's the same one and they've just put it in the wrong place so to speak.

Bloods otherwise OK so I'll take this as a positive outcome. It took 4 goes to get my blood out though! Apparently I 'dried up' after 2 tubes and since they need 4 tubes of blood they had to go in again and again and again. I'll ring in a few days' time and see if they've got any more details.

Hey ho, at least I don't have to go through scanxiety again for another couple of months.

Hmm, I agree, not quite the fuller picture expected but I agree you should take a positive view. Poor you with the bloods though, I take hot water bottle and hold it against my arm and this sometimes helps. But I don't think I've ever had to provide 4 tubes of blood.
I hope you had a lovely weekend with your DDs, and that they took over at least some of the cooking.

isn't this weather amazing? Hope you are managing to sit in the sunshine and enjoy it.

Middle daughter treated all of us to a lovely lunch in a pub garden on Sunday. Beautiful walk on the Downs first to work up an appetite. Absolutely glorious!

I asked for more clarification on the scan results. The hospital has lost my last CA125 blood test so I will need to have another one next week. Some nodes are showing growth though the two 'marker lesions' are showing a slight reduction. The nodes could be signs of an infection rather than cancer but there's no way of knowing really - and certainly not without the latest CA125 results. The consultant has called me 'stable' though, so I'll settle for that for the moment.

Hope it was good news with the CA125. Glad you had a lovely time with your daughters.

Hi Scarlett
I've just rung the hospital to get my CA125 levels - which are now up to 1300.

Logically I know this is only an indicator of the body fighting an infection and it doesn't necessarily mean the drugs aren't working... but emotionally, I feel it's crap. I'll see the consultant again at the end of next week and I know he's not even going to consider taking me off the trial for at least another month or two until after the next scan but I can't help wishing the numbers were going in the opposite direction...

The girls are all coming back for Mother's Day . And I've actually bought myself a new outfit (still leggings & tunic though!) for that and Hamilton... did I mention I'm going at Easter?

Hi TQ

How're you doing this week? Just wanted to say Hi and hope you haven't blown away in this weather.

Hello Okki! How lovely to see you here

I've lost my mojo a bit this week tbh. I had a somewhat stilted coffee with my very good friend who has been absolutely marvellous for a year but this week wasn't... People don't like the fact that I'm different now and still expect me to be booking holidays, agreeing to parties in 6 months' time etc etc.

And (hush, don't tell anyone..) I've been a bit bored with my crocheting too. I need a kick up the bum!

Today I cleaned two cutlery drawers and the fridge... bored bored bored. I did manage a short walk too though, which was refreshing despite the wind and the rain.

I'm really looking forward to Mother's Day and to DD3 coming home for Easter.

How are you?

I hope you and your friend get back into familiar ground next time you meet. It's so hard though knowing the person you're with isn't going to be around for things.

When does DD get back - is she with you for the whole holidays? I'm looking forward to Mother's Day too - will be a long time before I'm used to having my Mum here with us. I left home at 20 and moved 6000 miles away. She's been here since end 2017.

Have to say I'm not surprised you're bored if you're cleaning cutlery drawers and the fridge. That's just reminded me of the time I was potty training DS and he was 'helping' in the kitchen. I lifted him up to get something out the cupboard and he promptly wee'd all over the worktop and it went in the cutlery drawer. Not a reason I ever envisaged cleaning it out for.

We're all ok here apart from it being blowy. I've still been hooking away though I think after Chernobs I will take a break for a bit. I finished a square for the Square squad which I'm pleased with as I wasn't sure how it would turn out.

Have you read the St Mary's series? I love it - it's about time travelling historians who bounce around from one disaster to the next. I highly recommend it if you haven't. Apparently the Audio book is fab too.

Keep smiling TQ. Xxx

I love that square Okki! You're very clever. I can't do anything too fiddly or that involves sewing - my hands shake too much.

Thanks for the tip about the St Mary's series. I will have a look for that. I'm laughing at your DS weeing all over the kitchen worktop.

It's very blowy here too but I like to get out each day for a dose of fresh air. x

Hi TQ - how did your day go? Have you been able to get out walking this week? Our weather has improved a bit and is much more spring like.

Hello Okki
I was at hospital yesterday for my biweekly check-up. No change in symptoms so we carry on as normal. Next scan is April 11th.

I was in a 4-bed ward instead of my usual private side-room and it was so much nicer. Two other people in there, also on trials - though different ones - and we had a lovely talk about all things cancer and cancer related. I advised a lady on how to get started with PIP payments and she told us about her birthday celebrations.

The man - young and seemingly fit, told us about the 'funny' looks he gets when using his blue disabled pass. He has had one lung removed, is now Type 1 diabetic and has hyperthyroidism because of the drugs, and is dealing with cancer in his remaining lung .

There are no happy stories in our wards but it is so reassuring and comforting to be with other people in the same situation. I don't know why we're all usually put in separate rooms - I will ask for company next time!

And the cannula went in 1st time - bonus!

I haven't got out as much as I would have liked this week but I have bought all the Easter eggs!

Hello TQ, I am away at the end of the world (literally!) but just wanted to check in and see how you are. What a fabulous support you are to others, difficult days for you . Thinking of you from over the oceans .

Tx GG! I hope you're having fun.

How're you doing TQ?

Fab news on the other thread, so so pleased for you!

Tx GG!
I was coming on here to post as well. I didn't get to speak to the consultant (which I take to be a good sign) but the nurse said "tumour reduction measures 20%". She couldn't tell me any more about the other tumours, which are smaller and I think borderline measurable, but I'll settle for that.

My next appt is around 16 May I think and I will see the consultant then, so hopefully I'll get a clearer picture. CA125 still going up - now 1640 - but I'm assuming this is because my body is fighting the cancer.

I wish I didn't have to 'assume' quite so much... phone messages don't get passed on, consultant was 'very busy'...

Yay, I am so pleased for you.

Am so pleased for you TQ... x

Hi TQ,

I hope you are doing ok.

Hi Ghengis
Tx for asking - I've got my 4-week check up tomorrow so hopefully will find out more