CANCER SUPPORT THREAD 65 - for anyone with cancer or waiting for cancer tests (pets welcome!)

[WhatWouldLeslieKnopeDo]

Good morning everyone,

Welcome to the new thread, and the club that nobody wants to join. Our previous thread is here.

Anyone with any type of cancer is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you've got a loved one with cancer then you can get support here.

Please feel free to reintroduce yourself so we don't all have to remember from the previous thread!

I'm not even getting the boob off, so far at least. They are just focussing on getting the spine mets down.

Thank you ladies. Sorry for the pity party 

It really is all just utter shit and am sorry you're all going through this too.

KeepCalm, I'm so sorry you are going through this, it's unutterably shite. One thing I can be grateful for is that my two girls are grown. Please don't lose heart though- you could have YEARS.

I know @BitOfFun and I keep telling myself that and then when I see her sleeping I very selfishly think that even years isn't long enough.

Having traced my biological mother she's confirmed that there is no breast cancer history through her blood line and she still has her parents who are aged 86yrs......

There's no history of breast cancer in my family either, it's pure dumb bad luck. Although my mother did helpfully post on her Facebook that there was a link between it and heavy drinking . I sat on my hands, for which I think I deserve some kind of sticker!

I've had genetic testing and nothing showed up for me either (I'm 45). Bit your mum sounds really helpful 😣 I had a helpful pep talk from my BIL pointing out that no one really knows when their time might be up - look at Glen Hoddle and the Leicester City heli crash: er yes thanks for your 'help' 😳

Ah, she was just blundering about. It was funny though (being charitable). She's been tremendously supportive generally- she's just an embarrassment on social media 

No history in my family either keepcalm. I know what you mean about years not being enough but as my oncologist says the treatment paradigm is changing all the time with new drugs/treatments so who knows where we’ll be in a few years time. Hugs

That's absolutely right, Simmii. We are huge leaps away from even five years ago.

BitofFun - yes Herceptin has apparently been a real game changer for women with my kind of BC (HER 2 + and hormone negative). It used to have a really poor prognosis but now prognosis is quite good apparently.

Likewise with palbociclib, a recently-approved drug, used in conjunction with letrozole for oestrogen-positive breast cancer. It can massively increase the efficacy of treatment and give us a lot more time.

keepcalm that is absolutely not a pity party. I don’t have DC which is something that makes me very sad, but also means I can’t understand the absolute terror of risking leaving them behind. You are meant to be floored by that. Lots of people on here will understand I’m sure, but have some from me anyway. I hope you got some sleep.

Bowel cancer treatment has changed so much in five years which is one of many reasons I avoid statistics like the plague. It sounds like breast cancer is the same.

Thank you ladies you're all being very kind as always.

I can cope with the breast cancer and am very optimistic about that, it's the lung cancer that's terrifying me.

I remember my aunt hooked up to oxygen machines at home incapable of even walking up the stairs and it's just an imagine that's stuck in my mind.....

Fingers crossed it's a while off and my chemo is doing its thing.

I get the impression this might be the start of the ole hair loss too

Just when I was rocking my new quiff 😞

The irony of standing tweezing my fecking chin is not lost on me...... 🤣

Keep Calm

It is shit and there’s no better word for it

Why does hair never co-operate? I was hoping not to have to shave my legs again for the foreseeable but weirdly hair still seems to be growing on my legs whilst I’ve lost it everywhere else. Not that it really matters as I’m not going out with bare legs any time soon.

Hi everyone. I haven’t read through any of the posts yet but will do when things calm down.

You came up on active threads at the perfect time.

I was diagnosed with a grade 2 astrocytoma (brain tumour) in Aug 2015 after having a status eplilepticus in the middle of the night. My partner woke up and called an ambulance. The next thing I knew, I was waking up from a coma in ITU. I had my surgery very quickly after as it had to come out. It was very large and had probably been there for 10 years growing slowly unnoticed.

Fast forward to now. I have 6 monthly MRIs and got the news this week that my tumour is growing back, 3 sodding years after a full resection. I am absolutely devastated. I was warned to expect it to return but really thought I’d get many more years before that happened. I’ve been given an appointment with a neuro radiologist and am being advised to go for radio. But if I have radio now, I can’t have it again within the space of 10 years and knowing the bastard type of tumour I have, it will come back or maybe not even stop with the radio.

I’m now 32, with 4 young children and I’m absolutely gutted to be here. All I want is to see them to adulthood and that’s looks far less likely then it was a few days ago. I know you’ll all understand what I’m feeling, the anger, the despair.

I can’t tell my children this time. They were only 8,4,3&3 last time round and mummy put them to bed as normal one night and when they woke up the next day, she wasn’t there. They couldn’t visit me for the time I was ITU so they barely saw me for 6 weeks. My twin girls were young enough that they didn’t take much in, but my boys who were 8 & 4 did and it has affected them both. How can I tell them it’s back now they’re 11 & 8. It’s only going to be even worse for them to cope with now they’re older and understand more.

To make it worse, my mums been on holiday this week so I haven’t been able to tell her. I told her the results were fine. She’s back late tonight so tomorrow I need to break it to her. It’s going to destroy her again.

I’m off to London again today to see my specialist nurse armed with a page full of questions. I’m not sure I’m ready to hear the answers but what can you do.

Anyway, that’s the condensed version of my story up till now. I’m sorry you all find yourselves here too.

keepcalm I totally get that. It’s the lung mets that scare me.

woah glad you found us but so sorry you had to. Welcome

woah - so sorry to hear your story. Welcome and hugs .

Oh dear- another new person . So sorry you find yourself here Woah. I can see why this is such a frightening time. If it's slow-growing, can you put off treatment for a while?

Yet another tooth is crumbling away (I think it's two actually) and so yet another trip to the dentist is required. Anyone else suffering from tooth decay as yet another side effect of chemo?

@WoahBodyforrrm sorry to hear you story and see you on this forum. Life truly does throw shit at some people.
I hope your nurse can answer some of your questions, and I truly believe that as long as they can form a plan for you it's not as bad as first thought.
I can totally understand you not telling your kids till you have to.

Woah welcome but sorry you need to be here. Do you have a DH/partner to support you? As TQ says if it's slow growing so you need to start treatment right away?

TQ yes my teeth are getting worse despite using all the latest toothpastes and mouthwashes. One of my toenails is going yellow too so I've got manky toenails to look forward to. How are you feeling? Are you still getting stomach pains? Only 12 days to go although it must feel like a lifetime for you

Stomach's pretty good (touch wood). It's discomfort more than pain but I can still feel it spreading. So where it started as just lower abdo discomfort it's now more of a generalised full stomach ache, like indigestion. They did a scrape of my stomach lining last year when I had my radical hysterectomy but I'm assuming it's invading again...

I don't think the toothpaste makes any difference tbh, it's the whole structure of the teeth that is weakened - not surpising really as it's made of the same stuff as hair and nails. My toenails look gross but they've stabilised and don't hurt, which is the main thing.

whoa sorry you find yourself here, also with the fear of how to tell the kids and do so in the least scary way for them. I guess once you know exactly what the plan of action is, you can work out the best way of telling them. Are they likely to do chemo if it is so much smaller than last time? Good luck today with the specialist.

TQ as purple says the 12 days must feel an age whilst waiting. Sorry your stomach is causing discomfort and I expect as you recognise the feeling from before it is on your mind too. Are you sleeping ok? Can you get any sleeping tablets to help in that area if not? Are they likely to book you in for another scrape at all or was that just because you were being operated on before?
Glad your toenails are less sore though.

purple I hope your toenails are just discoloured and you are not joining the manky sore club. Apparently dark nail polish can help. I got a set with a foot cream, nail oil & dark polish in, but I only ever think I must paint my toes when I am not in a position to do it!

Lesley I hope you are feeling better and getting lots of rest & tlc in hospital. Thinking of you.

tahiti I worried after posting yest that I may have put you off the picc line. I think I was a bit of a wuss about mine at the start, I just wanted to reassure you that despite not being keen on it, I would have another in a flash if needed. I hope me detailing how it felt initially hasn't put you off, it is just how it affected me to begin with and other people seem to have got along with them better than me from the outset too. My job involves having a fairly strong stomach at times as I work with animals, who are sometimes injured, which I manage at work, but when it comes to me and my ailments to my surprise, I am a bit of a wuss about stuff it turns out!

Waves & hello to all, I hope everyone is feeling as well as possible

noodles it didn't put me off! I had a meeting about all my procedures and treatments today so I know what to expect, the nurse didn't pull any punches either. She said it might be hard to get used to.

I'm half asleep after a crap day so can't reply to anyone individually, but thanks for your reassurance. Lots of love to those who need a bit extra right now. Bastard cancer. Xxxxxxxxx

Thanks everyone. They advised me yesterday to hold off on treatment until I really need it. I’m just not sure I like the idea of trying to live my life knowing I have a brain tumour growing in my head with the potential to mutate to a fast growing GBM at any point and I’d be none the wiser other then my routine scans. My instinct is to get straight in and do something but understand that’s a knee jerk reaction so I’m taking some time to think through the options. I’m also being referred to a neuro-psychologist who she thinks will really help me learn to cope. She mentioned a Macmillan nurse to me at my results appointment but said today, Macmillan probably won’t give me one as I don’t actually have cancer because the tumour is benign. But benign in the brain still kills you. The specialists are fighting to get rid of the term benign/malignant for brain tumours and just use the grade to describe them. It would have been useful to see one to get advice with dealing with the kids etc if the time comes when they know.

I’m going to go and do my housework and then will get a cuppa, sit down and read through the posts here.