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.

Great news, I bet that is a morale boost . And keep away from that infuriating sisinlaw, I think you showed admirable restraint, I would have given her grief ....

Sorry that the latest chemo was so tough going but glad you are feeling better . Isn’t the sunshine glorious? Bluebells out and my magnolia about to burst into flower . Enjoy your day big hug

Hope you had s good get together with friends. Spring seems to finally be here! Sending you love xx

I'm glad to hear your update, TQ.

Just thinking of you TQ

Thank you my lovely online friends.

My eldest is moving out on Sunday to live around 2 hours away with her boyfriend. It's time she went (not that I don't love her!), she's 23 and needs to move on with her life, which she's not doing here. So I'll be on my own for a few months until the other 2 return for the hols.

I'm a bit scared but also a bit relieved. Because I'm on sick leave they keep asking me what I'm going to do every day and I don't really have an answer other than crochet for Woolly Hugs and watch TV. I did clean the mould off the bathroom grout yesterday - how thrilling is that!? - but one job a day is as much as I can cope with without feeling tired and emotional. I'm very much looking forward to not having to think about "what's for dinner tonight..." every. single. night. I DON'T CARE!!!!

I was supposed to go to a friend's wedding party on Saturday but I'd had a long walk in the morning and couldn't face another mile to the party and then back again. A friend rang and said would I like to walk with her and her partner but when I said I was too tired she just said "Oh OK" and that was it . No "how are you doing," "sorry you can't make it," "how is the treatment going," ... nothing.

Given the ever-increasing number of people who have cancer and are having treatment I'm really surprised at the level of ignorance around the disease and the treatment. My sister's suggestion when I talked about gardening is lots of little naps and cups of tea . I don't want a pity party but I don't know to help people understand the overwhelming lack of energy..

I'm actually feeling pretty good otherwise. But very dull. I have nothing to talk about.

It is really quite ridiculous that people don't get it yet. My best friend, in her last weeks, had to ask me to intervene with her lovely DH, who kept putting large meals in front of her. It was his way of coping, food being his thing, but not what she needed. I think we all need to just ask. What works best for you right now? What do you need? How can I help? So very sorry you did not get that. 💖

Hello TQ, good to hear from you. Bittersweet having eldest dd moving out but helping them fly away shows what a great mum you are. My own dd (also 23) is living independently and getting on with life, and very likely to move to Europe to live with her boyfriend. Thank goodness for modern communications though . I do miss her so but can’t let it show.
People can be so insensitive about illness, I.m sorry that thoughtless comments are so prevalent. And we all have dull lives most of the time.
Are you reading a lot ? I’m lost in all the Mitford sister books, all so different . And guilty secret has been watching all of Mad Men, which I somehow missed first time round. Highly recommended distraction therapy!
Take care, rest up whenever you want, it’s allowed!.

Thanks both.

I haven't seen Mad Men either GG I will take a look. And I've finished all the Cazalet chronicles now so maybe I'll wander down to the library...

well I've read everything from start to finish & you have really educated me about OC so thank you very much.

I truly wish you success in your clinical trial - you are brave and brilliant for going on one x

Hello and thank you Agatha. Unfortunately I was bumped off the trial in November before starting the Bevacizumab maintenance regime because the cancer came back straight away. Although I was NED (No Evidence of Disease) in my August scan after the op, the cancer came back immediately in a different place as shown in my November scan. This meant I wasn't suitable for Bev so they gave me a break over Christmas and I started Caelyx in early January. I'm having #5 (out of 6) this Thursday.

I

Took DD3 down to uni on Tuesday. I held it together until I was in the car back home again. The worst thing about the tiredness is crying at every tiny little thing. TV, radio, books, something someone says, a photo of my dog.. I wish I could turn the tap off!!

Caelyx #5 today. All good (the usual 2 attempts to find a vein), except I had an upright chair rather than a recliner. Can't complain - I was only in for 2.5 hours but I am short of leg and vertically challenged (5ft 2.5 inches, which isn't THAT short I feel) so can't reach the floor properly and need a footstool.

A roving pastoral counsellor - not sure what her badge said - was doing the rounds in the waiting room and asking people if they minded if she had a chat. I very politely said I didn't want a chat. Aside from the above problem of leaky eye taps, a waiting room is really not the place for me to discuss what's wrong with me.

The lovely 73 year old opposite me was happy to talk about donating her body to science though, which won't be for some time yet as they caught her breast cancer early. She was happy because it was her last chemo before her lumpectomy in a month or so.

Hello TQ, just to say that I hope the sunshine is lifting your mood, and that the after effects of the most recent chemo are not too ghastly. Thinking of you, sounds trite but sincerely meant. Wish your situation was not so shite.

You have to laugh at chemo brain....
Just tried to do the self-checkout the wrong way round, ie left to right instead of right to left, and got very cross with the machine because it kept telling me I'd taken something out of the bag......

It seemed logical to me at the time. In fact it still does... oh dear

That's not unusual for me, sadly. Left, right. Whatever 😳

Just go with the flow. You'll get there.

I hope you’re doing well OP. I have some idea of what you’re going through as my Mum was on the same treatments. She was initially diagnosed with ovarian cancer - the biopsies during her debulking surgery were inconclusive, but she was told they were 99% sure it was the primary since ovarian cancer is rarely ever a secondary and they hadn’t found anything else.

She went into remission after her first lot of treatment, but it returned pretty much right away. She was referred to an ovarian cancer specialist for a trial, but when they did more tests they found she had a very rare form of stomach cancer which was actually the primary.

I wish there was more awareness - I look at photos of her from six months before her diagnosis and I can see the signs, I wish I had known to tell her to see the doctor.

Wishing you all the best with your treatment

Thank you SinkGirl so sorry about your mum.

I've found you !!
I've not been around much this year and I'm glad I've caught up with you.
Take care TQ.

Hello again Hairy!

Today's excitment included a trip to the podiatrist who told me to get antibiotics pdq for infected toes (sigh), followed by 5 hour return trip to Notts as DD2 fancies a couple of weeks at home before returning for final final celebrations..

It's a nice day and I don't mind a drive - it's the only time I sing!

Hello TQ - sorry about the toes. I've had that a few times - is it related to the cancer/treatment? Hope you can get an appointment.

A good day for a drive at least!

Hi curtains. Yes it's chemo related, from last year's Carboplatin & Taxol. Luckily it's only 2 nails and 2 separate infections. Could be worse! My current chemo - Caelyx - does affect nails and hair but only slightly so I haven't gone bald again and my nails are just a bit crumbly.

DD1 & BF coming tonight to I can do the airport run tomorrow am. They will be mega excited!

On dear, I've just cried at and hugged a random man who have me £2 for parking at the hospital for my chemo. Normally I get the train but there are bishops today. Anything or anyone being nice just sets me off these days.

I'm all hooked up and about to enjoy a packet of crisps. I'm dog sitting for a couple of weeks, except she's more of a rat than a dog-/teacup yorkie. Hope she's ok....

Bishops TQ?!

Hope it went ok today.

Hope too you're getting to relax in your garden

Xx

I've only just noticed the 'bishops' Pennina! PMSL at the image of hundreds of bishops on the line. I meant to say ishoos! not bishops.
All went well though flipping steroids have had me up since just gone 3 am... and I'm redder than before. Caelyx is such a lovely pinky red neon hue it glows through my skin.

I can't really sit in the garden much. My skin is too sensitive. I tried some gardening the other day - totally knackered and every muscle ached for 2 days. But my acers can see the light of day again.

I have to wait for the results of my 12 June scan before knowing what the next step is, which will be end of the month. My DSIS bought me some lovely flowers to mark the end of this run of chemo, which was lovely but I think she was a bit disappointed that I wasn't more 'up' about it.

I have just read your two threads and wanted to say what a fantastic job you are doing in bringing some awareness of OC. Fingers crossed for the June scan results and hope they are as positive as the ones you had a few months ago. Love your gardening talk too. I love acers too and have two up by my pond waterfall. You need rest to cope with the emotional and physical toll the treatment and this awful disease is having on you. Hope you are coping ok and lots of people are here cheering you on and sending you lots of and .

Thank you so much Cornish, I really appreciate your comments. A pond waterfall sounds amazing. These 2 threads of mine are my escape but I have to be a bit careful as I suspect the DDs know who I am on here...

Maybe I'll bore you with my gravelling over my front garden story tomorrow. I feel bad about it but I can't cope with the maintenance.