Cancer Support #70. Please post on this thread, not #69, If you have cancer or are undergoing tests for cancer. Rant, rave, scream, cry – whatever helps. Supportive lurkers for Leslie welcome on #69.

[TwitterQueen1]

Thread #69 is filling up with messages of support for one of our own who is very seriously ill. Leslie told me a few weeks ago that she didn’t want any such messages to get in the way of those who need support through their cancer treatment so we are starting a new thread just for those who do have cancer or who are having tests. Could we respectfully ask lurkers and supportive posters to confine their comments to thread #69? Thank you.

We normally start with a brief introduction to our cancers – I’ll kick off. Ovarian cancer dx March 2017. Now on third-line treatment with a trial providing targeted and chemo drugs taken orally.

I haven't been in too much pain until last night when my fistula started hurting, I had really bad dire rear and since it's coming out of my vagina it was like acid so I spent an hour in bed crying with the pain. It's eased up this morning thankfully but I'm shattered today so other than dozing on the couch I can't see me doing much else

I do have my mam and PIL coming round to make lunch so I'm grateful for that as they also do the washing up while they're here

It's my sons 17th birthday on Tuesday which I didn't think I'd make it to so I've got presents to wrap later on if I feel up to it

Brassica if they do it every 2 weeks that means it'll all be over quicker. I used to have about 3 or 4 bad days from each chemo and the rest of the time I didn't feel too bad

Oh Purps, that sounds bloody hideous, I'm so sorry you are going through this. I was literally sobbing on DH's shoulder yesterday morning because of the pain I'm in, but it's nothing like what you're going through. I wish I could take some of it away for you.

Purple that sounds horrendous. The burning from Dire Rear is awful even when it stays in the right place. What you are having to go through is horrendous.

Brassica. Quite a lot of my weight issues before all this are because I have knee problems that affect my mobility so exercise is a problem anyway. Strangely though my knees do seem to be a lot better at the moment. Maybe that is a plus side effect of the steroids? Trying to keep walking and I am working three days a week and that keeps me on my feet and moving. I am lucky in that I belong to a great weight loss group and am getting loads of support. I probably don't expect to lose weight until this chem finishes but will try to stay stable at least and not let the steroids be an excuse to ket the weight creep back on.

Oh Bit it's awful isn't it, it's so tough for partners too when there's nothing they can do to help. Have they given you anything to help with the pain? If not ask for oramorph, it works really quickly when you need it

Meer steroids will most definitely be helping your knee, when I'm on them my joints are much less painful than normal. When I was having chemo everything tasted awful so I just ate whatever I could tolerate at the time which mainly consisted of toast smothered with lurpack. Not the healthiest but I didn't actually put any weight on

Sounds horrid purple

But really glad you’re about to celebrate PurpleLad’s birthday. Do you/he have any particular plans?

Mine had driving lessons for his 17th - absolutely terrifying lurch into Grown Up Stuff

I've applied for his provisional as PurpleLad wants driving lessons. Although he is sensible I'm dreading it. He's still a baby Although with the cost his insurance will be it'll be a while until he gets a car hopefully. I only passed my test 4 years ago and I'm still not the most confident of drivers. I'm just glad I managed to make it to his birthday as I was told back in January that I only had 4-6 months left so I've gone overboard on the presents I still need to sort him an 18th birthday card out for his memory box

I hope the dire rear has stopped now Purple. When I was 17, learning to drive and passing your test was a real adult marker. People don't seem too bothered about it now but I passed, though I didn't drive again for some years.

How is everyone's bank holiday going? I'm a bit wiped after Leslie's funeral on Friday so I'm being very lazy.

Purple I'm so sorry to hear what you're going through. It's so unfair, you don't deserve it. Nobody does. Fucking hate this fucking awful disease, it makes me so angry, I could just rage for days. Sending you the biggest unmumsnetty hug I can. Hope you have a lovely time celebrating your lad's birthday! So glad you made it too, enjoy spoiling him xxxx

Not much to report over here. Middle of a chemo cycle, the usual crappy side effects and staring at the four walls. Blah blah. I have another scan coming up to see if it's working and I've started using the headspace app to try and manage the scanxiety. No idea if it will actually help!

I've always been a hugger (but they let me stay on mumsnet anyway). I'm sending one your way Purple, just a gentle one. My dear MIL had that happen to her as well, bloody horrid.

TQ I'm not surprised you're wiped out after the funeral, it sounds like it was a lovely service. How are you feeling?

My dire rear has stopped for now and I've covered my bits in germolene to numb it and bepanthem to ease the rash. I feel much better than yesterday and my Macmillan nurse is coming out this week so I'm going to ask him about a hospice

I will take all the hugs I can get! I know I shouldn't admit this on MN but I love a hug

Purple - that sounds bad :( I'm glad that it's stopped now. Sending a huge hug.

TQ - hope that you enjoyed your lazy day

Big hugs purple xx

A big hug and a bonus hot water bottle from me purple. Hope you have a lovely day celebrating with your boy tomorrow.

Purple I hope your son is having a good birthday, and that you are able to enjoy it too x

WrenNatsworthy I hope tomorrow goes as well as it can x

Happy Birthday to PurpleLad

Wren Good luck with your op today (if I've got the time difference right!)

Hope you had a great day with your son on his birthday Purple

I decided against continuing with the cold cap for my fourth round of Chemo yesterday so let's see if I have any hair left by the weekend (I bought a wig last Saturday so I am prepared). At the moment I look like I have a very dodgy combover

Today's moan is about parking..
I had an echo at the Manor Hospital yesterday, which is private and amazingly has free underground parking... except that it was full and so everyone was trying to go round the one way system the wrong way. So I gave up and escaped, finally managing to find a space behind Waitrose. I put my money in - no joy. I realised I had to put my number plate in... except I couldn't see the frigging keys without my glasses...aaaaaaagh

I was late of course and told the cardiologist that the stress wasn't good for my heart .

Well that all sounds like fun —not—

Was the rest of the appointment OK?

I’ve has a soothing day, mainly gardening in the damp. Not that I have much of a garden (tiny back yard would be better description) but the plants were glad of the rain

Yes I think so tx - it's all pretty routine. Trial protocols are obviously pretty strict so I have to have bimonthly checks. The cognitive problems aren't going away though. I couldn't actually remember the name of the hospital until I saw it on a road sign (and I've been 5 times previously).

How are you doing Purple? Did you speak to your nurse about hospice care? I hope much cake was eaten...

Checking in. OP went well, surgeon comes round tomorrow to chat to me then I go home.
I was asleep but woke up to hospital noises. The ward is really great, not too hot and really comfy beds.
I have a pressure bandage on my eye socket which comes off in a few days.
I'll just read thread and catch up on your news now.
Coping ok so far with monocular vision

Glad it went well Wren.

I’m glad it went according to plan wren

STBX has monocular vision, but his is essentially life-long, I don’t think he’d have any useful hints on how to get used to it.

One thing I do remember is he wasn’t good at pouring wine into glasses - he’d think he’d got the neck of the bottle over the glass when it was well to the side, I’d move the glass and (because he was never wrong) he’d move with it! The penny did finally drop (after I’d told him, more than once). So - my sole and irritatingly unsolicited tip, is to touch the glass you are pouting in to, until you are sure your depth of field cues are working. Somehow using your hands makes a difference.

Good tip - I don't want to waste a drop of wine xx

PurpleLad had a brilliant birthday, he got plenty of money too for his driving lessons. I don't know if that's a good or a bad thing

Snow I don't blame you with not continuing with the cold cap, I've never tried it but it sounds so uncomfortable. You'll feel and look much better than you think you will if you do lose all your hair and there's so many lovely hats and scarves to choose from

Wren I'm glad the op went well. I love hospital beds, they're so comfy at my hospital

TQ cognitive problems were the worst part of chemo for me and it's frustrating that there's nothing they can do about. It's even more frustrating with the lack of disabled parking in hospitals, surely out of all places you'd think that hospitals would have plenty of them

My nurse came out yesterday and prescribed me some barrier spray but the chemist doesn't have any in so I need to go back tomorrow to pick it up. He's referring me to my local hospice as if I start going early then there's more chance of me getting a bed there at the end when I need it