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Cancer Support thread #78 - Newbies welcome

999 replies

MrsPnut · 03/03/2021 08:10

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh

OP posts:
Babamamananarama · 26/03/2021 18:50

Miava I'm also on the steroid comedown from tomorrow and like you, anxious about it. I guess on one level it helps to be prepared and to perhaps expect a mood crash, as then when/if it comes there's a reason for it...
I've also gone back to being really breathless every time they take me off the roids so not looking forward to that either.

It's just CRAP having to get used to not knowing how ill you are going to feel from one day to the next isn't it? And knowing that on any given day you can end up in hospital for some reason or another. I'm really struggling with the adjustment from being fit and healthy a couple of months ago to now being so bloody fragile.

HauntedDishcloth · 26/03/2021 19:31

@BitOfFun

I find that setting myself a challenging but achievable project really helps. Currently that is working my way through a retail-sized box of 48 Cadbury Crunchies.
Oooh that sounds yummy but the crunchy bits would be too much for my sore tongue at the mo Sad Somebody needs to invent a soft type of honeycomb!

Currently sat with a tissue bunged up one nostril that has been literally dripping all day & got my mum's old heat blanket round me - a right sorry state to match my mood! A few of us seem to be feeling crap the mo - let's hope the weekend brings a bit of improvement.

BitOfFun · 26/03/2021 19:49

Urgh, I've been there many, many times. It WILL pass though, I promise. Brew.

TopOfTheCliff · 26/03/2021 20:12

Thanks @Acinonyx2 you are right and that was a nasty 48 hours! I will wilfully ignore the prospect of five more of those Zometa infusions and rejoice that my bones have been reinforced.

@Babamamananarama I totally understand your feelings. I think it's grieving for what I have lost. Not that I was superfit but I could cycle 100k on a Sunday easily and my body just worked fine.

Hopefully there is a pause in the onslaught of poisonous drugs now. I got a nice parcel of yummy calcium tablets from the hospital pharmacy today so while @BitOfFun is pigging out on Crunchies I shall be snacking on Adcal chewy tablets. I know how to have a wild time!

I am resolved that the next week or two is going to be better. Time to exercise gently and eat healthily and look after myself. After Easter my favourite son is breaking lockdown to come and see me for the first time this year.

I think @thereisonlyoneofme is probably still in hospital being looked after with poor internet and will be back home soon. Sending love x

Best wishes to all struggling with chemo and surgery and waiting for test results.

Top

MrsPnut · 26/03/2021 20:36

I have been dressed today since lunchtime and even walked the dogs tonight.
Considering I have mostly been in bed since 4th March, this is a big thing. I decided to order KFC for lunch as we had nothing in (shopping coming at 5pm) so thought I ought to get dressed.

Hope all side effects are bearable and we are all as well as we can be.

OP posts:
BitOfFun · 26/03/2021 20:39

I consider being dressed a pretty major achievement, MrsPnut, so kudos for that!

MrsPnut · 26/03/2021 21:45

@BitOfFun So do I, usually I am in bed with nothing on my lower half. Supposedly allowing the area to breathe.
I never knew how much I hated staying in bed until I had to do it. I couldn’t even concentrate enough to watch anything on tv.

OP posts:
BitOfFun · 26/03/2021 21:46

It's rotten, isn't it? Worse in hospital with their plasticky mattresses.

Babamamananarama · 27/03/2021 06:48

Can I ask: has anyone tried CBD oil? And if so how do you use it?

Lizdeflores · 27/03/2021 08:34

I have I put it on my aching joints(!!!) and it helps. I brought it from a market holder who told me that her stuff was much stronger and the stuff you buy from H&B tends to be quite diluted. Not sure if that is right I'm a sucker for a sales pitch. I brought in the form of a body oil which I rub in

Percivalthebabyspider · 27/03/2021 11:56

Thanks Lubbaloo and Acinonyx2. I’m hoping it is just procedure and nothing more.

acunonyx2 good luck with your surgeon on Thursday. I hope it goes smoothly.

Lubbaloo I’m glad they deflated you! I’m thinking they may do that next week with me too.

Albertcampion and Maiva that all sounds utterly miserable.

I’ve been hit with the most insane itching and ‘buzzing’ along one side of my chest. They said it would be numb after the surgery but it really isn’t. Google (I know, I know!) brings up Postmastectomy pain syndrome.’ Does this pass?

Mckmck123 · 27/03/2021 13:50

Hi
I was recalled last week after a mammogram and had a core biopsy so waiting for results
But I was told it was cancer I too am so scared
The doc did say it was 9mm and did say my lymph nodes looked healthy
But the waiting is torture. Will get my results on 1st April
Good luck to all you ladies. Xx

MrsPnut · 27/03/2021 14:18

@Mckmck123 Welcome, pull up a chair and have a handhold. Please don't google because you just scare yourself. The worst part about the whole thing is waiting whether it's for results, treatment plans, surgery dates etc.

OP posts:
Mckmck123 · 27/03/2021 15:16

Hi mrs Pnut
Thankyou a hand hold is just what I need , it’s all feeling like a bad dream at the moment
I have been told not to google by the nurse. And I am trying not to.
They have already booked me to see the surgeon which also scared me because I am Thinking why so quick, am I that bad
I think I am preparing my self for the worst but hoping it’s not to bad
Thanks again

Acinonyx2 · 27/03/2021 15:27

@Mckmck123 it's not that it's particularly bad it's just that once they know it's cancer they want to act quite quickly - which is good. I was also told at the biospy - they are experienced and they tend to know when they see it and it's probably better to get us prepared. Really you've had the BIG news - the rest is just details and a plan. Focus on the positives (this might seem weird right now!) but 9 mm is not so big and healthy lymph nodes is good.

It was my surgeon who gave me my biopsy results although in the end I had chemo first - but a lot of people will have surgery first and maybe chemo/maybe not chemo after so seeing the surgeon next is a good logical step.

You will definitely get a plan next - that's the the thing to hold onto. As it happens, I'm seeing my surgeon again on the first to actually plan my surgery this time.

Acinonyx2 · 27/03/2021 15:30

@MrsPnut I hate that lolling miserably in bed and not even able to follow the TV. Interminable. I watch stuff I've seen before - musicals, whatever. Time passes....so....slowly.....

Acinonyx2 · 27/03/2021 15:35

@HauntedDishcloth dear god the amazing runny nose - varies a bit by drug but always full on. Just now it's really fast and watery so I have to constantly hold a tissue or I'll miss catching it Shock. It's quite disgusting Hmm DH complained yesterday that I'd gone through all the tissue boxes in every room....

Have you got a good mouthwash - maybe one with some pain relief like Diflam?

Lizdeflores · 27/03/2021 16:06

I lost my glasses today not really cancer related but it did make me feel that I can never get a break from the unrelenting shit. I explained to the opticians that I didn't have spares but the earliest appt I can get is 6.04.21.
I'm using my husband's spares and my old ones but everything has a very fuzzy edge to it. 😭

Mckmck123 · 27/03/2021 19:31

Acinonoyx2
Thanks I expect once I get a plan I will calm down, it’s such a shock though isn’t it, it’s the news you worry about and hope you won’t get
Hope you are feeling ok after your chemo

TopOfTheCliff · 27/03/2021 20:01

@Mckmck123 welcome to the thread nobody wants to join. It’s a very friendly place. I was in your position last June and I recall I was mainly very cross with everything! Just be kind to yourself and try to stay busy while you wait. Ideal spring cleaning or gardening time !
Don’t be scared if they want you to have more scans. It’s just information gathering and Knowledge is Power.

I’m almost out the other side after going through the whole Kitchen Sink Regime. Today I planted out some asparagus and strawberry plants which must mean I am expecting to be around to eat them in a year or two!

@MrsPnut I do hope you continue your improvement. You deserve it!
I have realised I no longer feel guilty about sitting for an hour playing some inane bubble game on the iPad. Those blasted nurses told me to rest and I am. I don’t watch TV so it’s mindless radio for me.

Hope the chemo side effects clear up for those suffering.
Top

Bloodybridget · 28/03/2021 08:59

Hello all!
Firstly a big welcome, and much sympathy, to @Mckmck123 - as others have said, this is a horrible stage, waiting for results, but generally people find it easier with a diagnosis and a treatment plan. Hope you have good support IRL, you will get lots here, and expert advice from the many breast cancer patients.
@BitOfFun mmm I love Crunchies! (contemplates buying self Crunchie Easter egg)
@Acinonyx2 sorry you have had such horrible bone pain. So you're thinking you will carry on with the injections? Can they prescribe anything that really helps with the pain?
@Babamamananarama hope you haven't had a recurrence of the vomiting, sounds vile.
@MrsPnut that's good that the new creams are having some effect on your sore parts - getting dressed is pretty good! Also that you have a date for surgery. Do you know how long you'll be in hospital?
@Anne1958 it's very nice that you are on the thread and I am glad it is a comfort to you. You are certainly helpful to everyone else with your kind words.
@Miava hope the port pain settles down - isn't it crap how everything that gets done to us seems to have the capacity to cause a problem?! Also that you start to feel better post chemo soon.
@littlebillie so you're through with chemo now? Wishing you a good convalescence and a long and healthy life!
@BadEyeBri hope tomorrow goes smoothly - I'll think of you having your first chemo as I have my last (assuming mine goes ahead).
@Lubballoo it must be a real nuisance having a seroma that blows up repeatedly. Hope it behaves itself for a while (I can't remember who else has a troublesome seroma atm, but similar wishes to you!).
@AlbertCampion sorry to hear about the chest pains and I hope the CT scan doesn't show anything worrying.
@Lizdeflores what a bloody nuisance to lose your specs! Do you think it's worth hassling the optician for an earlier appointment or cancellation?
It would be great to hear from @thereisonlyoneofme, but as others have said, she's probably still in hospital feeling fragile.
Also thinking of @quinin, @ElaineMarieBenes, @Livelongandprosper, @Merlotbythefire, @LucyWarlowsRightHand and others who haven't checked in for a while - hoping you are OK.
Waving and sending very good wishes to everyone else, including @TopOfTheCliff, @FizzyOrange, @gillmoregirl, @Trumpton, @KentishMama, @HauntedDishcloth, @KitchenFishCurry . .

I had a deeply annoying morning yesterday, no parking spaces available close to Barts - there are loads of blue badge places which are barely used! I think it would be a good idea if the hospital could issue temporary badges for people who have to come in regularly, while the pandemic is still on. Anyway I drove around for half an hour and eventually found a space further away, but I'd been logged out of my parking app, couldn't remember the password, trying to phone DP to look it up for me but she didn't hear the phone, etc. Finally got a neighbour to bang on our door, sorted parking, got to the chemo ward and then had to wait nearly two hours just for a blood test! I don't know what was happening, there were others in the same boat. I was totally fed up and am thinking I will go back to travelling there by bus quite soon.

And my tongue is so sore with ulcers, I'm very doubtful I will even get chemo tomorrow, as that's usually a sure sign of low neutrophils.

BadEyeBri · 28/03/2021 10:42

Thank you Bridget I'm sending you bone marrow enhancing vibes and hopefully your neuts play fair.

I'm going to spend my last day pre-treatment digging the garden in the rain. It's a soft, grey day here.

Mckmck123 · 28/03/2021 11:03

Hi bloody Bridget
Thanks for your welcome , it’s been good to receive messages of encouragement from so many people
I am feeling calm at the moment but it hits you in waves I think
Thursday will come round soon , not looking forward to it but I’m hoping as you all say I will feel better once I know the plan
Thankyou so much replying

FizzyOrange · 28/03/2021 13:30

Good afternoon ladies, just catching up on posts on here.

@Mckmck123 welcome to the nicest thread on MN, everyone is lovely here.

@thereisonlyoneofme hoping to hear from you soon and hope everything went well for you. I have my surgery for OC booked for 6th April and am so worried, I don't want it to come round and yet I wish it were happening today. Keeping busy doesn't seem to help as I don't have any energy to do much. Thinking of you xxx

FizzyOrange · 28/03/2021 13:34

Can anyone offer any tips or reassurance about the bowel prep before surgery please? This is looming large for me and is currently high on my list of worries.