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.

Just read through your thread. I hope you're doing ok. You are an inspiration

I managed to tell my BFF from uni today. Very badly. I haven't been able to talk to her properly since before Christmas really, as the DDs are usually around and always know when I'm upset. I wanted to give her some warning but I just blurted it out. I've cried down the phone to her so many times over the past 9 years or so - exH's stage 4 leukaemia diagnosis, awful awful divorce, and now this. She's been absolutely brilliant and I love her to bits. I'm really struggling this week. I suspect because I have properly finished work so I have to think about it more.

Hello TwitterQueen1 Im a regular MNer that found your thread after finding for out some not so great stuff that needs further investigation yet again. A growing mass in my uterus and a persistent ovarian cyst.

I have two young boys.

My best friend died of breast cancer age 31, less than 2 years ago.

I want to listen and share. I hope you’re as ok as you could be. The whole thing is shit isn’t it.

hello vent if you want to ask me anything please do, either here or PM me. Always happy to listen and share m experiences.

So sorry about your friend. 31 is no age at all. So sad.

TQ, sending you love. And to you too Vent. Thinking of you both x

The veins behaved very well today. The onc nurse got the cannula in 1st time with no problems at all. She did it just above the wrist - I much prefer it here, rather than back of the hand.

I FINALLY saw the podiatrist on Monday and feel so much better for it. One toe is a bit sore but the P did a brilliant job of taking off so much of dead/dying nails and I can now wear my normal shoes again.

I'm pretty good otherwise though it's scary not knowing what's going on inside. My back hurt yesterday, which made me think it's going into the lungs... my stomach feels bloated - but maybe that's the weight I've put on. I won't have another scan until end of March. Caelyx does work very slowly of course, it changes the DNA of the cancer cells to stop them replicating so I guess there won't be much progress yet.

I had my dog back for the day on Tuesday. It made me realise all over again how much I miss having one around, especially now.

Gosh, you have had such a trying 48 hrs ( I read about your dd in the other thread). She is in good hands with the Uni medical services. I hope your journey home was not too trying today . Rest up now, you must be shattered . What a stellar mum x

You are a star twitterqueen even with all you have going on 😘

Another one saying how well you're doing TQ.

Hi GG and all. Yes, journey back only 2.5 hours! Absolutely exhausted. I left her there because she has to give duplicate tests on Monday and the Exeter surgery is obviously on the ball and she gets seen same day. If she comes home it will only confuse timings of tests/ results etc. And my hospital is 45 minutes away...

The Exteter hospital was clearly watching for signs of Oz flu, sepsis or glandular fever. And that is very reassuring. Though they haven't got to the bottom of what's wrong.

Back to me... My pee is still a normal colour. In case I forgot to mention earlier, Caelyx is neon pink / orange and can affect bodily secretions. I was kind of looking forward to peeing neon. It would make me feel special.

Shaky hands are even worse. Breakfast in hotel wasn't available until 8am, and since steroids woke me up at 4.30am I was flippin' starving and in desperate need of sustenance. Needed two hands to get toast and egg into my mouth.

Toilet didn't work properly in hotel. Jolly good job chemo makes me constipated really. Handyman doesn't work on Saturdays...

Am glad your DD is in safe hands so to speak and hope that it all resolves itself.

Yay to normal pee colour! Am slightly alarmed at idea of neon pink wee!

Is the hand issue temporary or a long term effect of the medication (apologies if you've already outlined earlier - I do read your threads - honest!)

Hi Myrtle
Bloody steroids have had me awake since 3am.... thank goodness I only have to take them for a few days, and today is my last. It's good to know you're reading - I don't think I've mentioned my shakes before.

I've always had shaky hands though it took me many years to understand that it's actually a 'thing' and not just me being a wuss. And periodically I have got very fed up about it. People tend to think I'm either very nervous or hungover. I went to the docs some years ago and he suggested Botox in the shoulders or alcohol (because it's a muscle relaxant). I've gone down the alcohol route... .

I didn't like the idea of putting poisonous stuff in my body for something this it is intrinsically harmless. Benign Essential Tremor causes embarrassment only, nothing else. But it's worse with the chemo and the steroids. It runs in families unfortunately and my eldest suffers too. Since she's so young (22) I may encourage her to get treatment as it can and does affect other people's perceptions of you.

Hello TQ, you must be utterly exhausted. Thank goodness last day of steroids, can you be given some sort of sedative to counteract the effects in the future? I hope you can have a quieter day today and that dd3 is on the mend . Lovely dawn where I am, sunnier day in prospect for you too I hope.

Hello TQ, I have just read both of your threads back to back and I think you're amazing. I'm sorry that you are still going through so much but your story really is inspiring.

The reason I found your threads was from looking through the General Health board to see if anyone had gone through what I'm experiencing at the moment. I went to my GP a couple of weeks ago with vague symptoms of something not quite "right"... bloating after meals, getting full very quickly (when I'm usually very much a 3 courses, thank you very much, type of person), nausea, tiredness, aching. He sent me for blood tests which I went for last Tuesday. Got a call from the GP's receptionist on Wednesday afternoon asking me to go in. Saw GP on Friday and he told me the CA125 reading was very high (I didn't think to ask how high though) and that he's doing a fast track referral for an internal scan. Apparently I should be seen within 2 weeks, so just waiting for the appointment now.

Trying to get my head around what it could mean. I keep going from "it's more than likely nothing" to "I've probably got cancer... shit". It doesn't feel real. Like it's happening to someone else?

Hello MarsBars
Thank you for your comments - it's always good to know people are reading and thinking about me :). It matters.

So sorry you find yourself here. I know what you mean about it not feeling real. At this stage it could be anything of course. A raised CA125 marker is sign that the body is fighting something - but it could be any number of things, not necessarily OC.

Outside of 'normal' It doesn't actually matter how high it is - my friend with an off-the-ceiling reading was diagnosed with stage 1C OC and offered optional chemo (which she took). Mine was in the hundreds, but much lower than hers, and I'm stage 4 OC.

It's obviously a very worrying time and there's nothing you can do about it - that's the worst of it. You simply have to go through it all. Ask me anything you like. I was 57 when diagnosed last year. When is your scan? Is it an an ultrasound 1st or straight to CT?

Will you keep me updated? I will be thinking of you.

Thank you Twitter, you're very kind. It'll be an ultrasound scan (internal though, wince!) according to my GP and depending on what that sees will determine what they do next. I think he did mention CT next but I can't quite remember now... I was a bit gobsmacked to be honest and didn't really take much in of what he said. I was expecting him to tell me my thyroid medication needed adjusting (been on that for about 18 months now); I was almost positive that would be what the blood test had shown. I didn't even know he had requested the CA125 test. It all felt a bit surreal and when he asked me if I had any questions I was all "no thank you" but then of course my head was full of questions all night after I got home!

He said they would probably phone me with the scan appointment so hopefully it will be soon. He said it would be within 2 weeks anyway.

Ouch indeed to internal ultrasound. Mine was external - like a pregnancy scan - but the mass was so big the nurse / person in charge (never know who actually does these things) had no difficulty in seeing it.... You will need a CT afterwards if they do see anything suspicious because the dye they use will show up any other potential areas of suspicion.

I've had one years ago (can't 100% remember what for... abnormal smears I think) and I remember it being a bit grim but needs must. I've never had a CT scan before but they're painless aren't they?

I'm sorry you're in this position too marsbar.

Fwiw I've had loads of internal ultrasounds in pregnancy and, although a bit undignified, they didn't hurt. Also the CT scans I had the worst part was the cannula, everything else was fine.

Hopefully it'll be straightforward and easy as possible

Thank you Itscurtainsforyou that's really kind of you.

Mars, I’ve had lots of internal ultrasounds and found them totally fine, much easier than a smear.

How are things now, TQ?

Hope you are bearing up.

Hi Pochyk I'm OK until someone asks me how I am, if that makes sense. I'm doing a great job of carrying on as (kind of) normal until something makes me realise that things aren't normal at all. And then it hits me.

Thanks for replying, TQ.

It makes total sense. Don't ask too much of yourself, this would knock anybody for six.

Hope you are not snowed in on top of everything else.

Hello TQ, I am literally at the end of a continent, on a bucket list trip, but have been thinking of you and send warmest wishes.