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 had the first Avastin-only treatment today, which is a big marker for me. All over and done with pretty quickly (except it wasn't ready until gone 10 and the nurse had to go and fetch it).

Am feeling OK, a little bleurgh but I don't know whether that's just cumulative taxol and carbo still in the system or whether it's the Avastin (thank goodness they've stopped calling it Bevacizumab, no-one can say it!)

Nurse also got the cannula in 1st time, which was a bonus. To be fair, this happens probably about the same # of times as it doesn't if you get what I mean, but I'm known to be 'difficult' where veins are concerned. I don't think I'm that bad....

Hi TQ.........just been catching up on your posts, its been a long exhausting haul for you. This whole cancer business is bloody awful isn't it? I think as you have said its because you can look so well that you don't seem to get the support that you need. I have found since my treatment finished in Feb that friends have drifted off, no one calls or messages me to ask how I am anymore, mind you that was the same after my son died. I am stage 1c2 o/c diagnosed in July 16, had hysterectomy +6 rounds of carbo. Then diagnosed with lymphedema in my left leg in May this year so wear the attractive stocking every day. I had an extra MRI because of that to rule out early recurrence and all was fine. I am struggling atm with ibs, I get it when I get stressed and there has been a lot of that in the last few weeks. I know I should go back to my gp but I am at the stupid stage of not wanting to go because I am scared she might think its the cancer returning. I just cannot get cancer out of my mind. We went away last w/end to family in London and I felt fine, come home and I start again. I was like this back in 2011 when my husband was fighting his stage 4 bowel cancer and got myself so stressed m gp put me on anti depressants which I wouldn't take at first then did for 6 months and I did feel better. I am fighting going down that road again, logically I know I should go and get her advice but I am just feeling scared. I have my 3 monthly review with the sureon at the end of this month and I dread it. Yet logically again I know I shouldn't as he really has saved my life and has always been so reassuring. Its a nightmare isn't it? You must have found it so hard being on your own, as a Mum we don't want to worry our kids, my trio are 19 now and all busy with their own lives so I don't say too much how I feel. My dh gets it all but just keeps telling me it will all be alright, its not cancer back its you worrying, he is usually right! Anyway I pray and hope you soon finish all your treatment, keep that CA low and book that break at the lakes! Much love. x

Hi Triplets
Thanks so much for your post. I do feel a bit deserted. One brother hasn't contacted me for months now, but you're right, when you look well people just don't believe that actually you're still pretty sick inside. And does anyone talk to you about your son anymore? That must be hard too, if people don't mention him.

I have a scan in a few weeks' time and I don't want to go that in case it shows the cancer has started growing again. I'd like to stay in my little bubble for a while longer.

I was thinking about the Canaries as a possible destination but the daily fail says that apparently there's a danger the Tenerife Volcano may blow soon - and the fail is always right of course! I'll take DD3 back to uni this weekend and decide on Monday...

Hi TQ,
I am back with a (very slightly) new name, having managed to lock myself out of my Mumsnet account. Thanks for the sympathy, leg is improving but oh my goodness the bruising. But nothing compared to what you (and others) have been going through. Glad that this week's treatment is done, and hope you feel a little better today.

Do read the biography of Elizabeth Jane Howard that came out last year, by the wonderful Artemis Cooper. EJH wrote a fictionalised account of one disturbing episode in her life in a book called "Falling", well worth a read when you have got through all the Cazalet Chronicles. Plenty to keep you going through these dark winter evenings. I so hate it when the clocks go back.
Thinking of you.

TQ just read you live in south uk, so do I! Deal nr Dover! x

Triplets
My Grandad used to live at 36 Dover Road, Deal. I used to love going to stay there as a young child. This was when the Royal Marines School of Music was there and I used to wake up every morning to Reveille.

My father bought me my 1st ever Knickerbocker Glory from the ice cream parlour on the sea front. .

Grandad had an outside toilet that we loved, and a coal cellar. He was a lifeboat man, ex 1st WW soldier and worked in the mines.

I'm in West Berks now - a long way away.

Gosh I am 2 mins from Dover Rd, I may have known your granddad as my father worked at Betteshanger Colliery! What a small world! x

Wow! I'm talking a long time ago - in the 60s and early 70s. His name was Edward Hall.

The doc was massively unimpressed by my toenails though she did say she hadn't seen any like them before. I just wanted to know whether a) I had an infection because obviously as a cancer patient that's not good, and b) whether I just need to suck up the discomfort and live with it.

The answers were a) not sure but I'll give you some antibiotics if it's weeping and b) yes.

She did approve of my flip flops though, which is all I can wear right now. I'm told they are called 'sliders' now, and that my sparkly black Tesco variety (at £4) are particularly trendy. Good though they are, they don't cope well with the mega downpour we've had today. Luckily it's only a 5 minute walk to the surgery.

I went out last night with family and realised I have no conversation. At all. Hospital stays excluded, I last went away from home in August 2016. I couldn't contribute to the chat at all yesterday. They were talking about long weekends, short weekends, holidays, raves, concerts, plans for next year. I can bore to death about hospitals, tests, cancer, chemo, fear, uncertainty and doubt and all the rest of it. But I can't join in normal conversation - no-one was interested in me or my toenails at all - and who can blame them?

Anyway, I've decided to go away for the weekend! Alone. and do nothing except sit and read. I need a change of scenery.

Hi Twitter queen when mum was 64 she had the same symptoms as you.Diagnosed stage 4 primary peritoneal cancer acts like ovarian. .carboplatin and taxol worked for her.Then five years ago debulking and more chemo.She has just made ten years.I hope this gives you much hope.Best of luck with this journey.xx

Hey Twitter, just read your comments about veins disappearing when blood is needed, my mum is the same and has had an arterial catheter fitted and it has been brilliant. No more being stabbed, nothing to see or catch on clothing and the nurses can take blood through it or give medicines.

Just a thought.

Fantastic reassuring message from whatis, always lifts me up when I read posts like that, thank you.
So I went to the docs on Mon after having abdominal discomfort for three weeks, was pretty sure it was a bad flare up of ibs but then the panic steps in and it all became a vicious circle, add to that mega stress with dd at uni and I was beside myself. Gp was very reassuring, examined me and said all feels fine, not a lot to feel as most taken away last Aug! Anyway I told her I just feel atm I cannot go on with such high levels of anxiety, if I have to live with a cancer diagnosis for a very long time........I hope, I need to manage it. So she has asked me to try 10mg of Citalopram and I have agreed. Only started Mon but already I feel so much better. Got my three monthly review in two weeks with the surgeon, dread it but he always makes me feel so much better once I have seen him.

Twitterqueen......mentioned your granddad on our local heritage site, someone remembered him and someone else asked if he was ever connected to the Deal lifeboat? Hope you are ok, did you get away? xx

Silly me...........just read your earlier post and you told me he was a lifeboat man! x

Twittter...........are you related to Ian Dunkerly? Just read he used to play on Walmer Green as a child and his granddad Edward Hall was a lifeboat man! I know Ian and have eaten many times in his superb restaurant! What a small world! x

Hi *triplets I'm sorry you are so stressed though I completely understand why. I'm very breathless and I don't know whether it's fluid on the !ungs again or the drugs. I have another scan on the 24th so hopefully that will be reassuring.

ian is my cousin! Though I haven't seen him for ages. I'm in the Berks arm of the family.

Am currently on a weekend break in Ambleside, sitting in glorious solitude in a warm, cosy living room and about to venture out for a meal.

what's thanks for sharing your mum's story. It's always good to hear tales of long-term survival.

Twitter you should come to Deal and stay in Ians hotel, its really lovely and their food is some of the best in the town, we could meet up! Hope you are feeling a little better! x

I might just do that triplets! I'm so excited u know some of my family I feel like u r family too. I've been single for years and cancer is a lonely business. I'm here in the lakes because I realised that apart from hospital stays and chemo I haven't been away from the house in 16 months.

TQ I hope you are having lovely restful time, and enjoying some beautiful autumn colours. Thinking of you

I have never been to the lake district, everyone tells me how lovely it is. I hope you are resting and restoring your energy. Be fab if you came to Deal, it looked amazing the other day, the sea was like a mirror and you could see France so clearly! xx

Oh Ambleside is lovely Twitter I hope you're having a marvellous time. Have you been there before? We have been there for many family holidays. It's just about my favourite place in the world. We went this summer and it was so refreshing. The air is so clean! I hope you are getting a chance to recharge. The medical stuff just takes over your whole life and it's good to have a break from that for a bit

lovely - a mini break is great x

hope you are enjoying yourself

Back home now. It was lovely! Though I was frustrated at everyone walking heartily past me at speed,, obviously about to climb a hill or two. I would so love to have done that. I had 2 weeks in the Lakes when I was 16. A group of us from school went youth hostelling for 2 weeks. It was brilliant. And because I was a student at Newcastle we used to go over for the odd weekend - usually in the middle of winter!

I climbed Coniston on my 25th birthday. Happy Days. I drove to the village of Coniston this morning and admired the peak from afar. When I am fit and well again I will take the DCs and we will all climb something.

Glad you enjoy it too Leslie. Where do you stay? I was at Rothay Garth,, which was a treat. And I ate in Matthew's Bistro but the portion sizes were so huge I could only manage about half of what I got!

Glad you've had a good wkd TQ, hope the weather was better than it was here! I'm a fellow Newcastle graduate too - funny to think we may have bumped into each other

On paper I have had some of the symptoms but a scan didn't show anything abnormal. Does that mean I don't have anything bad wrong? I've been unwell for a couple of years and I've had tonnes of tests but still don't know what is wrong.