Cancer Support Thread 92 - Christmas Happy Hour at the Patience Inn 7pm tonight 🎄

[LemonDrizzle10]

Old thread nearly full!

Oh...but they do pay in 3 🤔 aarrgghh! I really want them but trying to be sensible here!

@Tilllly yes work completely understand and would be more than happy for me to come back but understand my request. Not in a union. GP, surgeon and oncologist all happy to help me retire too. I have various other conditions apart from this cancer so I think dde will apply. My sister is very up o Pensions and has worked it all out for me thankfully as my wee brain can't get to grips with it any more.

Thanks all. I have bladder cancer. It is a complete shock as I went to the gp with what I thought might have been appendix pain. Ultrasound results came back same day to say tumour, further tests last week said cancer. Got a date for my pre op, so journey started, just feel like I’m travelling at a million miles per hour with no seatbelt on.

Nah
It's comforting not to be the only one awake at 4am

Gods own county @lucysmam 😁

@Whatevershallidowithmylife if you complete the DDE form, that will help with ill health retirement - it cut some stages out for me

@PissOffCancer
Have a hug
We have all been where you are - you're at the hardest part of the bastard journey. It gets easier

My advice is to get a notebook and write everything down. Every appointment, every medic, phone call, etc. there will be a lot of information and a lot of people and it gets confusing

I stumbled in here 3 months ago and you'll find warmth, understanding and support. It's a safe place to say things you can't say in real life

@Tilllly thank you, I’ll remember what you’ve said about it getting easier when I can’t sleep. It is an absolute bastard, we have plans and things to be doing that are all now on hold, like everyone on here. Big hugs to everyone.

@PissOffCancer welcome to the thread nobody wants to be on. If you have read the posts you will know the rule. Don’t Google! Stick to NHS sites or Macmillan Cancer Support for safe non terrifying information.

I have been cleared to go home today but after paying such a lot I shall stay for afternoon tea and get my moneys worth. DH is coming to fetch me later. I’m very happy that the niggling pain in my bum I’ve been ignoring for years has gone! I’ve just got the usual amount of post surgery soreness.
Here is my bionic hip on my wonky pelvis. You can see the surgeon has stuffed the old socket full of bone.
It makes a nice change from cancer surgery I have to say. Everyone is so cheerful and positive.

Wow @TopOfTheCliff your pelvis really is wonky! If you went private does that mean afternoon tea comes on a 3 tiered cake stand with the crusts cut off your sandwiches and amazing patisserie?

@SewingBees let’s pretend it does. Much more exciting than reality, but I do have a nice stainless steel teapot and milk jug to pour the tea from.
Sadly I have a big box of dalteparin injections to use for 5 weeks. DH will be thrilled he can play nurse again. At least I don’t have any elastic stockings this time.

Glad all went well @TopOfTheCliff Hope you enjoy your afternoon tea, though I'm sure you'll enjoy being home more!

Hi all I'm new on this thread. Started chemo yesterday for breast cancer. Was expecting to feel shit today. I am a bit headache and feel like I've taken drugs lol but no nausea. I am taking the anti-sickness tablets. Is this normal or is it going to be worse tomorrow. ?

I am 3.months once a werk the 3 months every 21 days. Started yesterday but was told the following day would be the worst

Glad it all went well @TopOfTheCliff.

Does anyone know anything about Dexa scans? According to my (own) reading of my uploaded report I have the spine of a 125 year old woman and they are recommending Bisphosphonates, so I can continue on letrozole. Am I just going to end up disintegrating?!?!

I have breast cancer too. Had my operation. Had my first chemo on Tuesday.

I'm doing every 3 weeks for 3 months and then 3 months of weekly.

I've had a rash on my face, some water retention and a bleeding toe. Oh and sore inner ears.

I wanted a mastectomy but was only given a lumpectomy. Was out the same day.

Sorry I can't help.

@tam23 the DEXA scan compares your bones to a fit 30 year old. The distribution of results is plotted as standard deviation and your score would have to be outside 2 quartiles to be osteoporosis. (This is the bottom 2 percent IIRC). Most women post menopause are now given Zolendronic acid infusions routinely as it not only prevents osteoporosis but prevents long bone metastases. The infusions are six monthly.
Hope that helps
Top x

Thank you Top - that’s very helpful. I think it was just another ‘what now?!’ moment I was having. Hope you’re making a good recovery from your surgery. xx

Anyone with experience of Denosumab? Next appointment is to discuss introducing that into my meds. I've read the BNF page (thanks again @TopOfTheCliff for sharing it's existence waaaaay back last year), and a couple of other pages but would appreciate any rl experiences too!

Might have got my nose pierced earlier on, when dd1 got her birthday present piercing 🙈 I can guarantee hers was more painful but she says not & it's settled down from angry red now! Also bought a couple of random sweeties with the girls right by my side that they'll have not noticed 🤣

I take bloody awful selfies!

@lucysmam I'm about to start Denosumab (alongside Ribociclib and Letrozole). Just waiting to get a dental check up done first. I understand it's to strengthen my bones to help them fight off further bone metastases. My oncology nurse told me the other day that most people tolerate it very well. It's given as a monthly injection.

@Maddy70 Welcome to the thread, and sorry you find yourself here.

Can you tell us what kind of chemo you had and what sort of cancer you have? Then if someone on here has experience of that type of chemo they'll be able to help xx

@SewingBees yep, that's the info I've had too (already taking Letrozole & Abemaciclib). I couldn't start it until after the wonky tooth is removed & that's taken months to be organised 🙄.

Hi @Maddy70! Not sure what chemo it is you're having but I did 18 weeks of Paclitaxel with no side effects apart from being rather...erm...windy...the first week or two. & the steroid fuelled late nights/mornings. If you don't feel too bad then roll with it, but still make sure to rest!

I've a query

Been on the yacky laxido due to effects of oramorph, which hosp prescribed for me

I asked GP for a repeat script and got movicol. Yay I thought, can't taste worse

On the box it says "paediatric"???

Um...

And I'm in a grump

Book grp (sort of) I'm in, we meet 3-4 times a year. We're spread out so it's often a trek by car, 1-1.5 hrs or so but I don't mind.

Obviously can't drive now and March venue posted. Looked it up...

Once I get to my local train station (half hr walk tho prob can get a lift) it's a 3 hour trip with at least 1 change, some are 2 changes, and £30. Then half hour walk at that end.

A 7 hour return trip.

Won't be going to that then

Am v irritated that the venue is so far from public transport- no one's fault that the trains are crap but...

For those starting denosumab, I've found it will exacerbate existing joint pain and make me feel kinda like I have the. flu for 12 to 24 hours after. I pop a Claritin now before or just after and no problems. Make sure the nurse pushes it slow, though.

I was on monthly, then quarterly, then a bone met flare last summer put me back to monthly. Hoping to go back to quarterly because sticking around for that extra appointment is never fun, though that usually gives pharmacy time to pull my drugs. Seems I end up waiting thr same amount regardless!