Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

[LemonDrizzle10]

New thread

@mowly77 - I'm so pleased you got your insurance sorted. Though eye-watering, that premium doesn't sound too bad in the grand scheme of things. (To put it into context, I have a neighbour who has had a kidney transplant and she recently paid £1500 insurance for 2 week in the States.) I hope the assistance is OK. I have a couple of disabled friends and colleagues who book assistance and they've generally had positive experiences. I think a lot of people who use it can walk, but a wheelchair or a buggy just makes life easier. Obviously it's still shit that you are not the person browsing duty free and enjoying a G&T though - cancer truly is a bastard.

Congrats on getting through the main course of chemo @Remaker , and wishing you good news for your results appointment @Ikeameatballlunch . And also loving the Goldilocks @lucysmam

Have a great time in the US Mowly Great you got insurance in the end. Hope you don't need that wheelchair but it was nice of your sister, if slightly annoying, to get one. I would use it if you feel weak and save your energy for on holiday and entertaining a 4 year old on a flight.

yeah its not tooo bad really at all @dotty2 . I really thought it would be in the realms of totally uninsurable ... or as much as your friend paid, yikes. It does add a whole new dimension to the holiday.

I opted for the cheapest in the end, about £370 for me & DD , as the only things I was really worried about are medical expenses & they are £10million on levels of policy. I have a £1,000 excess but that's not surprising.

all good thoughts to everyone else

Best of luck and all positive thoughts to everyone waiting on diagnosis, tests, treatments, surgery etc etc

i had a call from the hospital today to say I am cancer free, they got the lot. They’ve also said they want me to have more immunotherapy which I’m actually quite relieved about - it did feel a bit like they were cutting me loose with a sort of ‘fingers crossed it doesn’t come back’ approach. It does bugger up
mine and the kids summer plans a bit but that’s a very very small price to pay and I am well aware how lucky I am.

@TopOfTheCliff you're right, I know. It's just frustrating looking around knowing stuff wants doing or I want to do but can't be bothered some days & need to just "be".

@mowly77 so pleased to see your insurance is sorted! I'd use the chair if I needed to - save your energy for your holiday.

Firstly welcome to newbies on the thread you don't want to be eligible for but it does have immensely lovely people on - the best !

Good luck and sending hugs to those recovering v from recent surgery/chemo

These threads move sooooooo fast - I really can't keep up.I don't know how to reply tagging everyone because so read i keep forgetting whose who
.
The virtual tea is a great addition- will try to squeeze in .

TopOfTheC London sounds great and your posts/energy are inspirational - sending many spoons .

LucysMam your daughter looked beautiful - all the prom posts cheered me up from you & the other posters

Plus your wig & Atteus wig - you both looked simply stunning

LemonDtizzle fab results need re BRAC

As for me well I have finished my radiotherapy sessions - they have made me even more tired than I was and skin colour change /breast skin changes but all doable so far - they kept telling me results are worse over next two weeks having finished but so far all going well (crossing everything).

Slight stress trying to get a repeat of Letrozole but have managed to get (side effects so far are joint pain and hot flushes)

Slightly more upsetting as it was unexpected I guess - i was sent for a DEXA scan - I wasn't concerned- but results show my bones are thin and I have sone oestroporasis so they are going to give vit D daily and a weekly tablet - I think it's biophodophate (?)

I didn't realise there was another page when I posted before I got in the shower 🙈

@bringonyourwreckingball that's truly amazing news! I bet you feel like a weight's been lifted, even though there's more immunotherapy to come?

@BeaLola prom was so much fun! I think I had just as much fun as dd, without actually going. The evening has been immortalised in a Youtube video of snippets of the evening. Unfortunately, my bald head features right at the beginning 🙄, trying to keep dd's dress from catching under her heels on the way up some stairs. Sort of wish there'd been a "head's up" that they were going to do it, but 🤷‍♀️ it's done now.

Was it something like bisphosphonate? The registrar mentioned something similar sounding, to me, when I saw him last, but nothing's been said since.

I've just been looking at my hair in the mirror - it's started falling like actual hair, presumably with the weight of it. I'm going to ask at tomorrow's appointment about supplements to encourage it to grow - I read about biotin & ordered some, but then daren't take them in case they interfere with anything 🤔

I'm just about to have a go at a paper ring - I'm in full Eras tour prep mode. I want to do ALL the things! The girls are finding my enthusiasm amusing - unfortunately for them I've seen a tiktok of a quick change outfit & was dead serious when I said I want to have a go at that and making the Midnights bodysuit 🤣 They won't get a look in when the beads arrive for friendship bracelets...

@lucysmam you sound like a fab mum to your girls. It’s so hard trying to keep things normal for them when you’re not well

Thanks @bringonyourwreckingball , that's lovely of you to say 😊

@bringonyourwreckingball I did a little happy dance for you . Great news!
@mowly77 I am so glad you can go and see your family!
So much for a lazy day today. I’ve had four more spontaneous visitors and one is staying over due to the train strike. My feet are firmly up though. They can make tea etc.
My oncologist rang to say that if my feet have healed I go back on the full Cape
dose next week. Not sure what to think about it. I was resigned to an easier life. Bloody cancer rollercoaster going up and down again!

Crikey @TopOfTheCliff that's a lot of visitors over a couple of days! One's quite enough for me.

I made the paper ring. Last time I tried, I really struggled to fathom it! I think I need to use plain papers though, or maybe do them the other way up 🤔 I'm going to try a heart one now...then maybe a diamond one. It'll be bed time once I've done that probably 💤

Thanks @mowly77 and everyone for the best wishes. I’ve got through it and am feeling ok.

@HauntedDishcloth in the end I went with expanders. They’d had a case with another lady who had some skin die and because of everything that they wanted to minimise risks and get me the best result. I think also in terms of getting me in proportion later on as well. I do feel a bit talked into it to be honest but they are the professionals and they had weighed up the risk.

@HauntedDishcloth how did you get your username?

I always get anxious before surgery. This was my 7th general anaesthetic and was the worst for me for pre-op anxiety.

@Ikeameatballlunch I was teaching before all of this. I’d actually left my job to visit the UK for a few months and didn’t manage to go back to it because I was diagnosed. I thought I’d sprained my pec hauling my suitcase around Spain and then back to Australia! Fingers crossed for your results today.

@Remaker well done on finishing your chemo. I hope it’s worked well. You’ll start feeling much better over the next couple of weeks.

@TopOfTheCliff thanks for your response up thread about the surgery. That’s lots of visitors. You are obviously very loved.

I’ve had so many lovely messages from all my UK friends and have a visitor shortly.

Keep safe everyone!

Amazing news Bring!

I'm finding it hard to keep up with names and who is facing what.

I feel like there's so much to do before my op. It would help if it wasn't school holidays although I'd have to be going into work. Feel bad putting the kids in clubs though. Have opted for half and half.

And coming off hrt balanced against thyroxine - they seem to interact (or lack of hrt.) Argh.

Although... I think my brain is clearer with less hrt I think half the issue with peri is the ups and downs of periods.

I'm going to recommend Liz O Riordan again for anyone as she's passionate about exercise (30 mins dancing in your kitchen) and strength training for bones. Gently, at home with stretchy bands and tin cans.

My dog is really keeping me going. We got her last winter and she's a joy and a sweetie and a monkey. We had loads of dogs growing up (this breed) and I've been bereft without one whim I was full time. Refuses to wee in the garden so being forced out for that early morning walk (and the rest) is definitely good for me.

I'm finding it hard to keep up with names and who is facing what.

At some point I will makes some notes of names.

This video was a good watch by Liz with stop breast cancer now. And a couple of others.

@lucysmam how did you make that paper ring?
I finally received the date to start my radiotherapy: they’ve kindly agreed to let me have my treatment when DD is with ex for 2 weeks. This means we are able to go on our camping trip with our friends.
We have a load of girls who would love to make a paper ring! I’ll be packing the bracelet beads and rock painting equipment too.

@LemonDrizzle10 cat ring. If you stop after instruction 8, you get a heart. They need a bit of tape to hold the ring shape, I can't get them to stay circular without 😻

Hi @FairyWren7 I had an expander for my first mastectomy way back in 2011. They had to take away a lot of the skin on that breast as one of the tumours was v close to the skin. It was fine, a little uncomfortable and tight as they expanded it but manageable. They put an implant in after. I had surgeon after surgeon after surgeon as they all kept leaving … then I found out I was BRCA2+ & has a risk reducing (ha) mastectomy on the right side. This surgeon had the bright idea of putting the implant in first, like a cosmetic boob job, leaving it in for a few months, then doing the mastectomy. I’m a C cup so for a few months I had one absolutely massive Katie Price tit. I had to wear a fake tit on the other side to balance it out. It was quite comical really. I was still going into the office & my tits were so massive my colleague kept bumping into them. Gotta laugh.

my left implant is still fine, very good. & it’s been in over ten years. My right one was never great because of the lack of skin, it’s positioned high up so I’m wonky. When the cancer came back I thought it was the implant acting up and I was all
for getting it changed & sorted. Doesn’t matter now obviously! It was the bastard cancer in the lungs and sternum underneath the implant.

I wish you luck on your implant journey, it was pretty good for me.

Thanks @lucysmam

@mowly77 you made me laugh with the Katie Price tit 😂

@LemonDrizzle10 just a thought - depending on the ages of the girls, it might be worth pre-cutting the paper squares for them (post-it's are about right too) and having a practise yourself so you can try and troubleshoot. They're dead easy once you 'get it' though.

@lucysmam thanks for the advice. Will practise before we go.

@mowly77 that sounds quite a challenging series of surgeries.

I’ve now got some breathing space to get the radiotherapy done.

I think implants could still be on the table if I don’t want the diep/flap stomach thing done. Which I don’t really.

Im in Australia and despite Medicare and having private medical insurance it still seems to cost a fair amount of out of pocket so I can weigh that up as well.

Saw my surgeon today, he was in to see me first thing. But no sign of the plastic surgeon as yet. He’s the expensive one for the future surgery.

Im so sorry you are dealing with other cancers. I’ve been guilty of minimising - thought I’d sprained my pec but it was cancer, thought my dvt was a sprained hamstring. I don’t think I will ever minimise again. Probably need a higher tier insurance rather than a basic one.

Im going really well today. Up and walking. Got shoulder stretching exercises to do.

As for Katie Price - how can she do it, she’s had so many surgeries. I just don’t get it. I’ve never liked my nose but I wouldn’t go under the knife! Must be dysmorphia or something of that sort!

Thanks for the positive thoughts…I’m on the other side of surgery and up and about. So glad it’s over and decisions made. Totally agree with you @FairyWren7 as to why Katie Price would choose to do all her surgeries. 🤷🏻‍♀️

@mowly77 so pleased you got the insurance sorted for your trip. What a relief off your mind.

@Ikeameatballlunch I’m a teacher too. My last day in school was 4th Jan and I’ve now done my 8 rounds of chemo and surgery. Radiotherapy and hormone treatment to come. I don’t see myself being back before November…just before all pay stops! I’m hoping to go back with reduced hours too…although I’ve not told them that yet.

@bringonyourwreckingball congratulations on your results!! Woo hoo!

Sending positive thoughts to those who need it today.

Blood results back for me…..CA125 up yet again to 733. Being referred for another CT and wait for results of 5 weeks. Fuck sake.