Meet the Other Phone. Only the apps you allow.

Meet the Other Phone.
Only the apps you allow.

Buy now

Please or to access all these features

General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Cancer Support Thread 93 - The Thread for the Dread and the Not Yet Dead? Everything you need to know about Cancer but didn’t want to know

971 replies

LemonDrizzle10 · 24/02/2024 17:59

Shiny new thread.

OP posts:
Thread gallery
25
Tilllly · 12/03/2024 17:29

SewingBees · 12/03/2024 14:38

@Enigma52 You are absolutely categorically not talking crap. You feel how you feel. You are going through what you are going through. Your lived experience is real and valid.

I've started actually rolling my eyes when people tell me I'm strong, or they're pleased to see me 'fighting' the cancer. I point out that I'm not strong nor am I fighting - I have a choice to take the treatment offered to me or not, that's all. There's no fighting, and limited strength, and a lot of tears.

DRIVES ME INSANE!

No one says it about chicken pox or tonsillitis

Tilllly · 12/03/2024 17:32

Zoopet · 12/03/2024 16:23

Now have some weird kind of rash on my hands.
Apparently it's a side effect of chemo.
Cancer,the gift that keeps giving ffs!

Nasty

Is it on your feet too?

Aveeno or cera ve moisturiser might help

Enigma52 · 12/03/2024 17:33

@Tilllly yep, just reading a bunch of messages from November to now. The number of sentences containing the words STRONG, POSITIVE, and YOU'VE GOT THIS, is mindblowingly fecking annoying!!

Tilllly · 12/03/2024 17:50

And don't forget the anecdotes about people they knew who has exactly the same, who made a recovery

there's always somebody who was given minutes to live and lived to be 176

Enigma52 · 12/03/2024 17:59

Tilllly · 12/03/2024 17:50

And don't forget the anecdotes about people they knew who has exactly the same, who made a recovery

there's always somebody who was given minutes to live and lived to be 176

🙈🙈 oh yes!!
Forgotten about them!

And " this will be over soon"
" You look so well"
" Just have the other breast removed"
(but it's no longer in my breast!)

SummerCycling · 12/03/2024 18:12

@Tilllly @Enigma52 I also really hate it when anyone says 'be positive' 'keep positive' 'positive mind set' or any words attached to the appallingly inappropriate 'positive' , given the horrific treatments, fear, suffering and everything else cancer brings with its evil self. It gives me the RAGE 😡 It is extremely patronising apart from minimising truly awful suffering and fear. When I was at Maggies, the psych there said they prefer to say "be kind to yourself". Yes, 100% better.

I'm not so bothered by being called 'strong' which I have often been called. At least it acknowledges that what I've been through / am going through is horrendous (unlike the "be positive" shit).

I dislike any warfare terminology too, such as fighting, warrior all that dreadful business. I am not a soldier or in any similar job in the army, navy or air force or even a spy. So that gives me the rage too 😂

Well exactly, @Tilllly it doesn't get said to people with other medical conditions does it. Although maybe it does to people with awful degenerative terminal disease like MND or Huntingdon's Chorea - I can imagine it being said to people with those diseases and in those situations it's just as warped and rage triggering as it is saying it to a cancer patient.

@MothralovesGojira

How stressful they keep changing what they'd agreed without actually saying they've changed it the accusing you of 'refusing' an appointment which is actually a very strong word.

It's wonderful news your CT scan is clear. I thought staging also included a bone scan though, in addition to CT (it did in my case anyway). Presumably because the bone scintigraphy is more sensitive to identifying bone issues than the CT is, whereas the CT is good for checking eg organs. Maybe they're just really confident your bones are clear; I am not medically trained at all, so I don't know these things and can only go on my own experience.

You asked if anyone had a full mastectomy. I did, plus full lymph node clearance all the nodes they could possibly reach. But I had this after months of chemo and was a wreck, which influenced my recovery a lot. I had no pain though, and was home the following day. No reconstruction.

About the surgery date, my hospital were good with that - it was within the timeframe advised post chemo and they let me choose which week. I think it's amazing they're offering you so soon; waiting for my initial appointment and to start chemo was the most stressful wait of my life and my cancer definitely progressed during all those weeks.

If removing your other breast is only because you have large breasts, then I find that weird reasoning. Maybe they think it's medically advisable? I am 34DD so is that middle sized breasts? Not small in any case and I wear a weighted silicone prothesis from the NHS to balance out. I bought the Amoena one for swimming as recommended by @Penguinsa because the NHS keeps telling us to swim but won't provide the necessary prothesis and I am not going swimming mono-boobed! The Amoena one is also more natural looking than the NHS one. I bought it with 30% off, they often do sales.

xxx

SummerCycling · 12/03/2024 18:18

@Tilly yes! when they say someone had "exactly the same" and is fine, in fact they went bungee jumping in New Zealand straight after their skiing break in the Alps. But "exactly the same" is actually not the same at all, completely different subtype, stage, grade, gene, driver, etc etc etc just approximately in the same or close by body part and under the diagnostic umbrella of "cancer"

INFURIATING and IGNORANT!!!!😡😡😡

Enigma52 · 12/03/2024 18:28

Well said @SummerCycling
You've covered everything I haven't the energy to say!! 👏

Just cut my own weird kink ridden fringe, in semi daylight. Now that WAS brave!!! 😂

MothralovesGojira · 12/03/2024 19:01

@SummerCycling
The problem is that each breast weighs 3+kg each - as I said very dense and heavy. My 'good' boob is always incredibly painful and is very full of cysts and to be honest I always hated them and now hate them even more. I'm going to insist that it is put in writing that they've agreed to remove both as the 'good' one is not very healthy anyway.
In our area they nearly always do surgery first then chemo because it is two separate hospitals and it probably works for them.

tothelefttotheleft · 12/03/2024 19:09

@MothralovesGojira

"They plan a mastectomy on the left breast and have said that they'll do the right later as my breasts are dense and heavy I can't be left with the one. I'm not interested in reconstruction. I hate them and just want them both gone now. "

I'm a 34jj. They would not do a mastectomy on me despite it being what I wanted. The surgeon said the very most they would do would be to take one boob. How could I live like that?!

Zoopet · 12/03/2024 19:10

Tilllly · 12/03/2024 17:32

Nasty

Is it on your feet too?

Aveeno or cera ve moisturiser might help

@Tilllly thanks for the tip
Currently using cetraben so I look like an oiled fish!

Tilllly · 12/03/2024 20:26

Oiled fish look is all the rage now @Zoopet

MothralovesGojira · 12/03/2024 20:49

@tothelefttotheleft

Why would they do that to you? It's bloody barbaric. The BC nurse said that I could use a weighted prosthesis so that my spine isn't pulled out of alignment but that is effectively sticking a 3kg weight in a bra. I can't see how that's going to be comfortable as it will be like strapping a bag of flour to my chest. Regardless of the fact that I wear a very good fitted bra I have huge grooves in the top of my shoulders from the weight of the breasts and I can't remember when I last slept on my front.

demivolte · 12/03/2024 20:54

I've just looked at some prostheses (is that the plural?) online and have been shocked by the cost. This is probably a stupid question, but do they fit in a normal bra? I'm a bit confused about what I need ahead of surgery.

Pacifybull · 12/03/2024 20:57

demivolte · 12/03/2024 20:54

I've just looked at some prostheses (is that the plural?) online and have been shocked by the cost. This is probably a stupid question, but do they fit in a normal bra? I'm a bit confused about what I need ahead of surgery.

You don’t have to pay. You get given them by the hospital. Mine gave me a bra as well.

demivolte · 12/03/2024 21:00

@Pacifybull that's good to hear, thank you.

tothelefttotheleft · 12/03/2024 21:33

@MothralovesGojira

With a lumpectomy I was told not to sleep on my left side. With a picc line I'm not supposed to sleep on my right side

I can't sleep on my back cos my boobs try and drown me. Found the lack of sleep really difficult to cope with after the lumpectomy. I had massive swelling,cording, seroma and an infection.

SummerCycling · 12/03/2024 22:24

@demivolte I finally got my prothesis a few months after surgery once someone somewhere else told me the NHS gives everyone who's had a mastectomy (without reconstruction) a free silicone weighted prothesis. So you might need to fight a little to get one, but they have to give you one that is the correct size and skin tone - well, sort of matching skin tone vaguely!

As for bras, I bought mine from Nicola Jane and Amoena. My hospital doesn't give anyone a bra. It's up to each trust what people are given apparently (a friend who works for Nicola Jane told me). They are special bras with pockets for the prothesis and come with pockets both sides.

I was given the normal silicone prothesis, but had to buy my own swim one. The Amoena one is great, as recommended by @Penguinsa

@Zoopet I'm another Aveeno fan, also MooGoo is good.

Enigma52 · 13/03/2024 06:33

What a night!
Boiling hot at midnight; do I ring Christie hotline I ask myself? Take paracetamol, down flat lucozade and take temp religiously until normal.

Then freezing, but normal temp.
Starving but nauseous.
Sore mouth.
Headache.
Then I just cry!

Is this the ribociclib that I'm just not tolerating? Menopause being an arse again? I feel like buying a bottle of oestrogen gel and slathering it all over my dry body!!

Hoping oncology ring this week with scan results, so I can rant. These symptoms are brutal and my quality of life precisely zero!

Sorry for moaning again.

Tilllly · 13/03/2024 09:00

@Enigma52

I think you need to ring them, I think you know you need to ring them.

Sorry 😙

Dinoswearunderpants · 13/03/2024 10:48

Sorry to jump on this thread, hoping it's available for those who are supporting people with Cancer.

My Dad was diagnosed with prostate cancer last week. He had bowel cancer last year. He also needs a bone marrow biopsy so suspect leukaemia too.

I feel so helpful.

TopOfTheCliff · 13/03/2024 10:57

@Dinoswearunderpants sorry to hear about your dad. I hope he is getting speedy investigations and a plan for treatment. There may be a Maggies or Macmillan or other Cancer support centre at your hospital where you can go for help. This thread is really for people who might/ do/ used to have cancer.
The MN thread for family is here:
https://www.mumsnet.com/talk/life_limiting_illness/4729740-the-storm-part-3

The storm part 3 | Mumsnet

Continuing the thread, mostly supporting partners of people with cancer - just in case it's needed. The previous thread is [[https://www.mumsnet.com/...

https://www.mumsnet.com/talk/life_limiting_illness/4729740-the-storm-part-3

demivolte · 13/03/2024 10:58

@Enigma52 sorry to hear you've had a rough night. I think it would be a good idea to ring the hotline as you are feeling unwell even though your temperature is normal. I hope things improve.

@SummerCycling thank you for the info, I haven't heard of Nicola Jane and will look them up. I'm an awkward size which makes bra shopping difficult and expensive at the best of times.

@MothralovesGojira I meant to say yesterday that I'm having a mastectomy towards the end of next week, so will report back about recovery. I asked to put back my surgery by around a week for childcare reasons which my hospital agreed, but I was told not to leave it any longer in case the tumour started growing again. I hope you are able to speak with oncology soon and make a plan.

lucysmam · 13/03/2024 15:33

Soooo, I had my review today after my absence meeting & have been told I'm not allowed time off (apart from medical appointments) for 6 weeks. So, presumably, if I suddenly get diarrhoea or some sort of sick bug, they want me in school to share it round 🙄🙄 Or if anything happens to me & I have to have time off, it'll be a stage 2 meeting.

Brilliant.

Starting to feel like they're doing their best to get rid & I don't know what to do about it. Right now I could cry. Makes it even worse that they've approved time off for someone to get....a fucking boob job! Fucking cosmetic shit's ok but cancer treatment isn't!??? What fucking dim-fucking-witted-fool decided on that nugget of genius?!

I didn't want 6 months off for chemo. I don't want to spend every day next week tootling to appointments. I don't need extra fucking stress from work. I'd like to jack it all in but why the fuck should I do what they want. I'll do what I want, what suits me, not them.

& we've all had a bollocking for those quick conversations in the hallways - you know the how're you?...yeah, ok, you?...type ones with colleagues we might see in passing once a week? Yeah...not allowed apparently.

That's how they want it...I will toe the line To. The. Letter. until someone moans I'm being rude. They won't know what's going on with me because no one's gone scurrying to tell tales that I might have expressed behind closed doors that I'm finding being a 1:1 isolating & don't feel like part of any fucking 'team'. Nope, they won't know a thing in future. Because I will share nothing beyond the minimum. With anyone.

I shall be permanently "fine" if ever anyone asks. & I shall decline to share anything medical when asked, unless it directly impacts my working hours.

They'll also find I no longer arrive early, or leave later than my hours. No extras. Fuck all.

<practises poker face> Shame I can't do make up - I'd like to have make up to match my not talking to anyone resolution.

Was going quite well too - no-one had pissed me off in a while.

Enigma52 · 13/03/2024 16:11

@lucysmam oh my fucking god. I've read your post and am gobsmacked!! What the actual hell; a boob job??? Seriously??

Wait a minute though. Are we not protected under some kind of disability discrimination act? Are you in UNISON?

I've got my occupational health review next week. God alone knows what they will report back to the Head!

Sending you a big MN hug. The sheer fuckery of our situation and your schools attitude; it stinks!!!

A boob job.. FFS!!! 🤦‍♀️

Swipe left for the next trending thread