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.

Hello TQ,
I'm so sorry that your concerns have come to pass. However, there must be a way of getting you to Oxford for at least exploratory talks about possible trials etc. I'm sure you would meet the eligibility criteria for patient transportation in Oxford (oncology patients definitely fall into this category). In addition, the Oxford Maggie's centre may be able to help (you could call them on 01865 751882, email is [email protected]). Btw, they have a full time benefits advisor called Atif Kaudri although I think you have to book an appointment to see him. The Maggie's centre is next door to the Churchill.
Sending you a huge bunch of x

Sorry the outcome you were anticipating was confirmed, TQ. At least the shitscary unknown waiting bit is over. Sending good thoughts to you tonight, it's a lot for you to process. Take your time and be kind to yourself

Oh TQ, I'm sorry to hear - even though I know you were anticipating this news l. They might offer transport if you're eligible for the trial.

Thinking of you. What a bastard.

X

I'm so sorry TQ, that's really shit.
I second finding out about hospital transport to get to Oxford, it's worth it if you think the trials would suit you.

You're brilliant TQ, I wish I could do something to help you.

I'm sorry to read your update Twitter. I read your thread when your first posted

Thank you everyone . My immediate plan is to accelerate DD2's driving lessons (do you see what I did there?! ) so that maybe she can drive me in a few month's time. Driving there for appts etc is not a problem, it's only for the chemo. I don't have the energy to chase PIP this week now. I am fortunate in that my work health pension is enough for me to live on. I'm OK, just immeasurable sad for my DDs.

It's so bloody tough with kids TQ. Get Macmillan to chase up your PiP and please ask a friend to take you to chemo, just think if it was one of your friends asking what you you say? I'm sure they would be more than happy to help. If nothing else it makes them feel like they are helping in some way

Lots of love to you TQ and your DD's.

Nothing to add but hugs.

Oh TQ I am so sorry. Definitely worth pursuing the Oxford trial.
(((hugs))) and .
I was thinking of you yesterday, crisp morning, beautiful blue sky and golden ☼ streaming across the fields.

TQ1 hats off to you!

I just read your whole two threads, ( I'm off work, sick, nothing serious).

You are a special woman: honest, brave (sorry!), articulate, empathetic, funny, intelligent, a great mum and a general inspiration.

I'm hoping to join team TQ for handholding and encouragement during your next set of treatments. Wishing you lots more good news days, treatment hiatuses and lots and lots of time with your girls.

Dear TwitterQueen,
I have been following your story mostly through the general cancer thread. Reading that thread because I recently had a cervical cancer scare ( 4 days in hospital then admission of complete misdiagnosis) and my mother is currently going through treatment of an aggressive breast cancer.
But , more importantly, I wanted to say that I live a stone’s throw from the Churchill Hospital in Oxford,and we have a nice spare room.
Complete long shot, but, if you wanted to investigate the Oxford trial and were accepted on, you would be welcome to stay in our spare room for as long as you needed. For free.
I was already thinking we should offer it to patients who had to travel a long way for treatment/nurses with a long commute, then saw your post..
PM me if you are at all interested- you would of course want to find out more about us.
We have found it so helpful being so close to the hospital for my mum’s numerous admissions , and want to be able to offer this opportunity to someone else.
Thanks and good luck with the next stage, whatever that turns out to be.

You're all very lovely, thank you. Chocolate so kind of you but I have a graduate at home now so need to be here. It's going to be a few weeks before I get the consultant's appointment so I won't know anything more for a while.

Naked so nice of you to join the team. All support is very welcome.

TQ I have followed your story from the beginning. I have graduate dd's and some in university and younger kids so can only imagine what you are all going through. Thinking of you and really hoping you can get on a trial.

I did some more paperwork sorting yesterday. I've done most of the long-term stuff, ie consolidating savings accounts, closing down the ISA, ensuring no PPI etc, but I started on the filing cabinet. I need to do a 1,2,3 of whom to contact, what my passwords are etc and it's also time I threw away things like my visa statements from 6 years ago....

I came across a few personal things, like my work 'strength finder' outputs and paperwork relating to one of my hobbies. I threw these in the rubbish pile at first but then got upset when I realised I was deleting 'me' before I've actually gone so I put them all back again. I also think it will help the DDs in the whole grieving process if they can read / scan through these things. They will want to know more about who I was and what I did and what I enjoyed and I think it will help them to know what other things I've done. They won't want a blank filing cabinet - I'm not blanking myself out just yet.

TQ, I have lurked on your threads but have never posted on them before. My mum died four years ago in her mid-fifties from cancer. She was given a terminal diagnosis quite early on but massively outlived her prognosis (it goes without saying that I hope you will too).

I was really struck by what you just wrote about not wanting to "delete" yourself before you've gone. I found going through my mum's paperwork was a really important experience for me in the grieving process. I found out things I never knew about her (nothing dramatic!). I read through some of her divorce paperwork before deciding that actually, now that she had gone, there was no need to hang on to unhappy memories of her broken marriage to my father. I kept many things that made me proud of her, that seemed to capture her essence, that reminded me of happy times. About once a year I have found myself going through this box and it makes me sad but also reminds me of the person she was and the happy times we had.

Anyway, this is a very long winded and self absorbed way to say that, for what it's worth, I think you're doing absolutely the right thing.

Wishing you all the best.

Thank you for delurking Delurked! I have got rid of all my divorce paperwork though. My DCs really don't deserve to see all that nastiness.

Aw TQ, you're quite right to keep things that are about who you are. You'll never be deleted! All those bits and pieces are so important- I've got my late father's desk which I only partially went through and I sometimes find "treasure", like a funny note or a message to himself to remind him to do something and I love that. A pencil sharpened with his pen knife, a newspaper clipping, a post it ...

I'm sorry you're having to think this way though.

Hope you're ok otherwise- I often think of you. Lovely sunny day here, I always enjoy autumn.

Xx

Autumn is my favourite time of the year. Nature is just snuggling down but it's so so exciting leading up to Christmas - Halloween, Guy Fawkes...! Love the cold, the crisp mornings, the frost...

TwitterQueen1 I was very late to this thread. My sister had an ovarian cancer scare last year. Swollen tummy was the symptom and I remember feeling guilt when her GP told her she had ovarian cancer after scans and tests. She had a swollen tummy for over a year and I remember thinking god she is getting fat it must be the booze. Thankfully she didn’t have ovarian but still had two major operations. I told my friend recently that she needs checked out as she had a big belly and I don’t care if I offend as it worries me. When I saw your original post about a fat belly I went to add my comment but realised the thread had been going on for a while. Cancer has been a curse on my family, having lost both grandmothers, auntie and all my uncles too and nearly my mum who is thankfully is still with us. I have had two school mums die of cancer and it was just truly tragic. I worry about this disease and have come on here as you are truly amazing. I can’t even begin to imagine what your going through. But a big massive hug from me!

Hello Observatory and thank you for posting. Sorry you've had so many relatives die from cancer and glad to hear your sister is OK. The UK lags behind many other countries in cancer diagnosis - lots more works needs to be done.

Just checking in TQ, have you been to see the consultant in Oxford yet?

Hope all okay with you and that you don't get hit by too much rain in your part of the world. It's blustery and windy here but not cold.

Pxx

Hi Pennina
No, not yet. I was told it would probably be about 4 weeks.... my next appt with my usual consultant is on the 29th so we'll see then... I'm still OK, some discomfort sometimes but nothing major. I do find it odd that I'm so ill yet don't look it..

A bit stormy and windy here but nothing major. I went out earlier with my coat on and nearly melted! It's so warm! I think tomorrow is going to be warm too. I'm dog-sitting 3 elderly Shih Tzus tomorrow - should be fun. xx

Hi TQ! For some reason although I was following your threads I haven’t received alerts (glitch in the system). Been frantic here & suddenly thought I would check in.

I know what you mean about deleting yourself. After my mum died I was gutted that I had so little of hers. I wanted to ask her questions & feel close to her. I found a diary she had written as a teen which helped but I had very few photos (hence I am snap-happy now!). I wish I had talked to her more. I am sure you have talked to your DD’s. You won’t be forgotten you know. I remember my Mum’s sense of fun & humour.

Still hoping there will be more therapy options for you.
Have you seen any lovely Autumn colours? Round here there are some gorgeous golds and russets. I would so love to see Fall in New England.