Cancer support thread 63 for a handhold or advice and anything in between

[purpleunicorns]

Continuation of the lovely Leslie's thread here as it was nearly full

If you're worried about symptoms, waiting for test results or just need a safe place to vent then pull up a seat, we're a friendly bunch and we don't bite too much

There's quite a variety of cancers on this thread so hopefully one of us will have some advice and hopefully you don't need to stay for long.

I'll start with my story:
Diagnosed with stage 2b cervical cancer in October 2017, 25 lots of radiotherapy, 4 internal radiotherapy and 5 lots of chemo. Was told last week that it's spread and is incurable, palliative chemo starts on 16th July

PS year do exactly what you need to for your sanity and also to make life as easy as possible

Thanks for all the thoughts and good wishes today. It was bad news. I have invasive breast cancer. I think it is all hormone positive, so quick growing. I haven't really taken in all the info yet. It is grade 3 as cells so different to usual breast cells and I misunderstood staging & grading and got them muddled up.
I see the oncologist next week, after that I have a CT scan and bone scan and then start chemo before the op to reduce it all. They found cancer in the tumour and the node, so the lump & all my lymph nodes in my armpit will go. I have the book "Mummy's lump" to have a scan through. The nurse taking bloods saw it sticking out of my bag and the look she gave me had me burst into tears after holding it all in quite well.
Not quite sure what to do now with myself! I started painting the lounge yest as a distraction and I may as well finish it so it is a nice place for me to recover/crash out when I feel rough. I feel totally numb though, I was convinced by the consultants reaction to the US and what she said to me that it was cancer, but it is odd to have it confirmed.

I'm so sorry Noodles. It's shit news for you and a huge shock, even though you weren't expecting a positive outcome. I don't know the ins and outs of breast cancer but I too had chemo to reduce the size of my ovarian tumour. Once the treatment plan kicks in you'll feel better but right now you need to rest and be kind to yourself. It's hard to absorb it all in one go.

noodles sorry it wasn't better news. Even when you think you are prepared it can still be a big shock. Hopefully you'll feel a bit better once you are having treatment. It's difficult waiting and feeling like you're not doing anything.

Grade 3 sounds scary. But it means that the cancer will suck up more chemo. If it's hormone positive then you'll presumably be able to have targeted drugs as well as the chemo.

addle I hope the side effects are less extreme this time round

Oh noodles I am sorry and I think you’re right to keep up with the decorating - to have somewhere to chill while you go through all the bits and pieces that are coming. You’ve obviously taken lots of info on board which lots of people don’t manage with the shock so sounds like you are doing well and just be kind to yourself and speak to people when you’re ready and and and a little too x

Aw Noodles it really is shit but the faster the cancer grows the more effective it sucks up the chemo which makes it more effective. I've also decorated my house. It takes your mind off things and will be somewhere to relax if chemo makes you feel a bit crappy.
I hope you have someone with you right now

Congratulations on the house Addle! I'm one of these weirdos who loves moving house

Oh purple I so wish I did! This is third move in a year!!! but this one will last longer (that’s the plan anyway )

Noodles sorry it's not good news and it's totally ok to feel sorry for yourself right now. How old are your dc? That book sounds good but it must be incredibly hard to read it with your child. Only do it when you feel up to it. And sorry your ex is being a prat. Some people have a knack for making it about themselves like my mum and we just have to ignore it.

Adle yay for being home and puke free for now. And congratulations on house move.

Been very wobbly today and feeling sorry for myself. Dh was told his uncle has been taken to hospital and found out he's got lung cancer. They're not really close but it didn't help my emotions.

Thank you purple, addle and WWLKD.

I'm sorry you've had such scary news noodles.

Sorry addle I managed to miss about the house congratulations!

Sorry you're feeling wobbly Dulce

Thanks everyone - no moving house just yet. Thankfully we are in rented so can go slow! I am no use and texts take forever with the shakes and muscle cramps making silly numbers of typos!!

dulce what day of cycle are you? Is this the steroid come down part? If so tell it to go away! It’s hormonal not real, though I can see how more bad news is not helping and sorry to hear that don’t forget - no more poxy oxi!!! No more! Just keep that thought...

2:30 in the morning and I can't sleep for over thinking things I've been on Jos Trust (cervical cancer forum) and speaking to others who have had the same chemo mix as what I'll be having and some had it a couple of years ago and are still stable now. One even had the treatment in 2014 and her latest scan was clear

Not sure if I'm trying to convince myself it's fixable but when the oncologist spoke to me I assumed I only had months left.

Don't even know why I'm posting, just need a rant and a crystal ball so I can see how long I actually do have and make plans

purple I am awake too. Night time is always weird and lonely (except when your rowing neighbour fits have woken you up).

The way i see it, everyone is completely individual and there are always cases of predictions of prognosis being wrong - why shouldn’t that be you feeling it is not great and then being clear?! It’s so important to have hope and as much positivity as you can (harder at 2.45am!!) so you just do everything you can to make you be the one with the clear scan and we will be here listening to any rants and hand holding along the way

Gits not fits!!!

Purple it's impossible not to feel scared and wonder what will be. But the truth is that nobody knows and we have to try and enjoy life, however long we have left. I say this when I can't actually do that myself yet and am permanently consumed by panic, but I know it's what we have to do. I hope you are feeling better this morning and managed to get some sleep. When do you start chemo?
Adle how are you feeling apart from the insomnia?
I'm on day 5. Slept sort of ok and I think I feel a little better this morning although I'm a bit nauseous and have a sore bum.
How's everyone else?
Noodle hope you have a good night, how are you feeling today?

Thanks Addle and Dulce. The early hours of the morning when everyone else is sleeping certainly is a lonely place. I go from feeling positive than I can get through to sheer terror and panic at the thought of leaving everyone.

Feeling a bit better this morning and I'm going to Whitby for the day tomorrow which will be nice

My kidney function test is on Monday then chemo starts 16th. Luckily it's only once every 3 weeks so I'm hoping I don't feel too rough the entire time

Hi everyone,
Thanks for all the messages. Sorry head still not with it enough to name check. I had a major stress/info overload headache yest. Was home alone with the kids & went to bed not long after them. Then woke up in the small hours, so have been awake since 1am & am caught up on reading some of the leaflets whilst watching a comedy.
My children are 4 & 7 years old. I put the youngest into preschool as an extra day so I had some time to myself today. I have met one of my besties and we've had a coffee and a giggle. I am so lucky to have some brilliant friends, but 3am is a lonely old time on my own.
I have just had a phone call from the CT dept and they have a cancellation for Monday evening, so hopefully I will find out pretty quickly if it has spread or not (this is what I am worrying about mainly) so I feel really lucky and tearful all over again.

I hope you are all well, so sorry as I haven't really taken in much detail and have totally forgotten who posted what and need to head off for the school run. I will catch up properly later, I think a friend will take the girls for a few hours tomorrow if I need extra sleep, so am planning to just rest as much as possible. I have taken leave with work until treatment starts as there are many aspects of my job that may be hard to do and it means I can do long dog walks and get straight at home whilst my youngest is at her usual preschool sessions.

Sorry for the epic. to all and thank you so much for the warm wishes. X

Ooh purple are you a Yorkshire lass too?? Hope you enjoy Whitby - we are due a visit soon!

year my kids are v similar ages - there is quite a difference in understanding between them and the older one hears everything. The younger one only got the basic facts like not being well, having special medicine and an operation to take out a lump. They are pretty resilient though

purple I'm always wary of comparing to anyone, good or bad, just because there's so much variation. But there's no reason to think the treatment won't work well for you too. I tend to try and aim for a balance between optimism and preparation. I don't want to be blindsided when I deteriorate, but I don't want to spend all of my time waiting to die either. It's very early days for you and it's a lot to get your head around. But you will adjust sooner than you think and life will carry on around the cancer. I'm always very grateful as I tend not to experience the middle of the night worries, but I know it must be horribly lonely and everything always seems much worse at night. Could you try distracting yourself with music or an audiobook or something if you can't sleep? Have a splendid time in Whitby :)

Dulce sorry about the nausea and sore bum - do you have cream for it?

noodles good news that they've managed to squeeze you in for the scan quickly, and I'm glad you've got supportive friends. Don't worry about name checking or anything like that. You're in shock. Be gentle with yourself

Waving to everyone!

Noodles it's good you have friends to talk to and just have a giggle to take your mind off things, accept any offers of help that can just so you have a bit of time to yourself.
I'm back to work Sunday but luckily only a 4 hour shift and I'll be back home by lunch time

Addle I'm County Durham way, about an hour from Whitby. Kids are a lot more resilient than we give them credit for. Will you be moving far? The kids will love having a new bedroom

Leslie I've just downloaded loads of books onto my kindle, the problem is once I start reading I can't stop and end up getting nothing else done
I think I just have to hope for the best and prepare for the worst. The fact that I have days where I feel absolutely fine really messes with my head though

Sorry year that comment was meant for noodles (damn chemo brain )!

I’m moving across the road! So not far enough to justify making someone else do it (thereby saving money) but probably too far for a nauseated chemo person to carry stuff - hoping a magical house moving fairy will appear like magic and do it all while I’m resting

noodles so sorry to hear your news, I'm a breast cancer poster, mine too was hormone receptive. I think the wait to find out if it has spread beyond your lymph nodes is actually worse than the wait to find out if you have cancer itself, so big hugs, keep busy and cry as much as you need to, is my advice. The scans are pretty speedy so it shouldn't be too long.
My kids were 7, 9, 11 when I was diagnosed and they all read Mummys Lump, (I downloaded it onto their tablets so they could read it whenever) I was as honest as I could be, and answered all their questions as factually as I could.
They will probably know if it's HER neg or positive as that's something they can treat as well. I was neg so don't know much more than it involves herceptin!
I had some good news today, histology results after my op, there were no bastarding cancer cells in my ovaries and tubes, so either there are none left at all (plan A obvs) or the letrozole was still working. Phew.
Lovely cool evening here, DH and I are in the garden drinking wine, the children are keeping quiet indoors hoping we've forgotten they are still up

Pepper that is fab news! I'm so pleased those bastard cells have fucked off.

I went to see the newest Jurassic Park earlier - not as good as the last one but you've got to love a good dinosaur movie. Flipping long. We came at 8pm and luckily it was only a 10 minute walk home to chicken pie and cheesy brocc.

Purple being given a timeline may not be helpful (IME). I'll PM you if you'd like more info - I'm shy of posting all the details on here as I think my DDs lurk...

waving to addle and dulce - hope you can both relax a bit this weekend.

Leslie I've had ulcers for the last few months too - so painful - and what deity decided that chocolate should be the WORST thing ever to try to eat? !

In other news, DD3 made Pioneer Woman's cinnamon rolls today (at my instigation). OMG - heaven! so light and fluffy. If you fancy baking them make sure you halve the quantities and then quarter the icing ingredients! They like things big in Oklahoma.

pepper fabulous news enjoy your wine!.

addle I hope you can get someone to do all the hard work for you :)

purple yes it's weird isn't it. You imagine you'll feel different somehow! I feel fine most of the time. And even when I don't, it is always temporary so then I can shrug it off

Well done lacies we've made it through another week!

Sorry you're suffering with them too TQ are they constant? At least mine come and go. It's weird, it's like my tongue has swollen there's dents all along the sides of my tongue from the backs of my teeth digging into it