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.

I hope it goes really well for you x

I’ll be thinking of you tomorrow, hope the traffic and parking is not too ghastly. Lots of positive vibes coming your way x

Good luck TQ. Here's to more shrinkage!

Brain mets
I'm off the trial
Can't drive
Radiotherapy/radiosurgery in a couple of weeks.
On steroids in the interim.

More later when I've had time to absorb.

so sorry to hear this update.

Oh TQ - I “know” you from another thread. I’m so sorry to hear this

Shit. Such shit news. Offering a big strong shoulder to lean on.

Hi TQ,

We are here for you to unload on to.

Dear TQ, I’m so sorry , sending you the biggest virtual hand hold

Thinking of you x

Sorry to hear your news. I'm always inspired by your positivity. Take care x

I don't think I mentioned here the cognitive issues I had last month - I went to pay at the pump for petrol (not something I normally do) and then couldn't figure out how to enter my pin. There were too many buttons to choose from.

Then I chose a vacuum cleaner online, went to buy at Argos and couldn't figure out what the problem was - the product number didn't match the Argos code number and I didn't understand why.

Waitrose in Oxford had some fancy new diy scanners and I thought there's no way I can understand those.

Anyway, I told the consultant this today (I did tell the other consultant the same last week but she thought under-active thyroid) and he whisked me down for an emergency brain CT scan, which showed up two brain mets.

He asked me 10 questions and it took me too long to answer what year it was now. I couldn't accurately touch his finger as he moved, nor could I could 'walk the line'.

So... not chemo brain fog after all . Radio planned for the next two weeks sometime. I don't know where the mets are, or how big they are. I'm not sure I want to just yet. I'm trying to take it one day at a time.

Can't tell DDs yet - one has 2nd year finals all next week. I'm in no rush to tell them. Don't know how long I can get away with not driving.

Thank you for all your kind words. Has anyone had radio on the brain? Not sure what to expect.

Oh TQ - I'm so sorry. Never heard of anyone with ov ca who had brain mets. Just with breast or lung. Your doc must be really on the ball because the ones I knew were diagnosed after really specific symptoms - headache, seizure. Not the sort you describe, which could be easily written off as senior moment, stress, whatever.

As for treatment, just one or two day sessions, as far as I remember. But this was before the more targeted cyber knife thing. Steroids to reduce swelling. Not painful in itself. But I wasn't directly involved in their care so don't know about side effects. Mainly tiredness, I think.

Not driving will be a pain. Can you set up an account with a local cab firm so you can get out without major palaver? So it's like ringing up for a bus? LA might have a subsidised scheme - they do in London. Is dd expecting to be picked up from uni? Might have to do some creative thinking about another reason for being off the road. Perhaps something wrong with the car, not you.

Hope I'm not hitting the wrong note by focusing on practicalities. You must feel as if you've been run over by a bus. Tho' I must say you sound remarkably lucid.

Thinking of you. What a bugger of a disease.

So sorry to hear this @TwitterQueen1. Thinking of you.

Ov Ca brain mets are apparently rare Thymeout - not much consolation. I've actually got an MRI today

Twitterqueen, I have been following your threads right from the beginning but not commenting very often. I just wanted to say how sorry I am that you have had this news - it must be absolutely brutal for you. Wishing you strength for whatever comes next. xxx

Hi TQ,

So sorry to hear this news. I hope that the MRI gives further information and things can be done to improve this.

Take care x

Tx Wonky - I'm glad you're reading
Yes, it's bloody brutal

I guess the MRI results will go to another MDT and they will then decide on the best treatment - I think I'll have to wait a couple of weeks.

I really do appreciate all the support - it does help a lot.

You must get your GP on the case, there will be services available to get you to and from hospital appointments now you can’t drive for medical reasons . I will gladly pick up Dd3 from university when her exams are over . I do mean it . I know this won’t come easily to someone as independent and stoical as you, but you must ask for help and please don’t hold back from doing so . Remember that song “ lean on me”?

I commented on your original thread too. And have lurked since. There are services available and there may be social care help in your area too, depending on your part of the country. A phone call can't hurt. TQ, I'm not medical, but I've done a quick read round, and two mets aren't too bad.

You've been such a trouper , you didn't deserve this on top.

Oh TQ I'm sorry, that's really crap. Hope the MDT get on with it & you get treatment booked in ASAP.

Tx so much GG
I really appreciate the offer. I'm hoping my ex can do the next pickups - she doesn't like his driving but apparently it's improved since he got a dashcam, reported a driver to the police, and was then told he was also at fault for swerving .

TQ, I temporarily lost you then found you with this news. Bloody hell. Just so crap on every level. Hard enough for you but I know you're factoring in Dds and uni. And now this. I'm so sorry TQ. Pxx

My DF had radio on brain mets btw. He had very extensive mets throughout his body from malignant melanoma. The radiotherapy wasn't a huge deal, he had a mask made to help target the mets. Main side effect was fatigue. A headache but it would be gone after painkillers and a rest. He was also so stressed by not being able to drive too. He used patient transport services a lot and the hospital had a volunteer driver scheme too.

Just read an account of someone with brain mets from malignant melanoma. Referred to nodules rather than tumours. Radio plus immunotherapy seems to have seen them off pro tem.

I think, if they're small enough, it might be possible for them to be seen as a set-back - yes, of course - but to some degree a reversible one? Hoping your new team will be able to shed some light on this.

I know mets will still be ovarian wherever they show up, but wondering whether the rarity in your case might mean they're susceptible to drugs used for different cancers of origin. e.g. If my MBOT turned into Mucinous Ov Ca, chemo for bowel and gastric cancer is thought to be more successful than the usual ov ca combos.

Does your private insurance cover additional expenses for not being able to drive as a result of your condition?

Hoping that the weather is good enough for you to be able to get out for a bit this weekend. Nature - and dogs - are v restorative for mental distress.