CANCER SUPPORT THREAD 58 - New thread, new year, but the lacies are still here! Please join us if you have any sort of cancer, or are waiting for test results

[WhatWouldLeslieKnopeDo]

Happy New Year! may 2017 bring health and happiness to us all

Welcome to oldies and to newbies. If you've just been diagnosed then this is the place for you. And if you're waiting for test results then please pull up a chair. We will hold your hand while you wait, and hopefully we will be able to send you on your way soon enough. If it isn't the news you hope for then we will be here for you.

Our previous thread is here

Following on from royalmama's suggestion (see, you're not just famous for typos!) I have compiled some of the excellent advice from the previous thread and I will post it below. I've divided it into sections to make it a bit more manageable. Please give me ideas on how to make it better for the next thread! :)

Can I have a bit of a rant? I've been using the cold cap during treatment, and it seems to be working so far. But it went a bit wrong today. There are only two working machines available (and this is at a big cancer centre) - the rest are standing gathering dust in corner. According to the nurses, some have been there for over a year, the person who's supposed sort them out has done nothing about it - and neither machine was working properly today. The nurses did their best with caps from the freezer, that they've been using instead, but I fear they just weren't cold enough, and only lasted about 20 mins before they needed replacing.

I'm cross because the nurses said they keep asking about it, apparently there is 'plenty' of money available to repair or replace them (which there will be, as the charity that supports my hospital is one of the most successful in Scotland), and it takes up loads of their time trying to sort it out. There's thousands and thousands of pounds of equipment which has been paid for by public donation just lying in a corridor :(

I have emailed the charity that fund them and taken to social media about it all! But I will be truly devastated if today means I lose my hair after slogging away with it for six treatments.

The good news is that I'm now more than halfway through chemo though :) Five weekly treatments left.

Rant away Flippy that's what we are here for. How frustrating. And what a waste to have them all sitting there waiting. I hope that today's session hasn't done too much damage. Well done on being nearly finished :)

I saw mention of a charity called Don't forget the kids for children with a loved one who has cancer. I tried to look at their website to see what they do, but it's being updated at the moment. I thought it might be useful for you and your DS.

freddie not ridiculous at all. I felt like that when I was waiting for chemo last year. My oncologist said I should go on holiday beforehand. I enjoyed it and managed to relax a lot of the time. But I kept having these moments thinking there's cancer inside me and I'm not doing anything! Even the most aggressive cancers don't grow that fast and if it were really risky then they wouldn't delay, but sometimes it is hard to be rational about it. If your son is traumatised now just think how he'll react when you've had your lip fillers

Deutsch I'm glad you've had good news I hope you can relax a bit now while you're waiting for the surgery. I know it feels like ages now, but it'll fly by. Have you had any surgery before? There's a list up the top of things that might be useful to take and also some surgery tips from javabean

rocket that sounds reassuring I hope you aren't too sore but that the radiotherapy has well and truly zapped all the cancer

LittleGreyCat a girl, how lovely :) I hope she's not waking you up too much at night

My surgery is booked for next week! I've got my hospital bag mostly packed now. Just a few last minute bits and bobs to organise. I don't know how long I'll be in for or anything like that.

Thanks Leslie - it feels good to be over halfway through active treatment for sure. And thanks for flagging up that charity - they're not UK-wide yet, but I wonder if it's a model that could be expanded. Do you go in for your surgery on Wednesday or the day before? Hope you're feeling ok about it.

I got a very quick response from the CEO of the charity that funded the machines, that was both positive but awful too - they actually fund the maintenance, repair and training for years afterwards, so all anyone needed to do was to let them know. She said she was horrified to hear about it, but she's on the case. One phone call is all it would have taken to have sorted it out months ago!!

Oh FFS what a complete pain in the bum! How frustrating for the nurses too that all the lazy person had to do was phone them so much wasted time and effort and presumably that means people may have been unable to have a cold cap if they wanted one. Well done to you for getting it sorted

I'm sorry the charity isn't available to you.

I'm going in on Wednesday morning :)

Hi Lovely Lacies

Just popping in to send everyone positive vibes and , , , , - the full monty.

I'm not a cancer patient but its is a subject close to my heart and to lots and lots of people's, so please know that there will be lots of lurkers rooting for you all and also doing practical things behind the scenes - volunteering, fundraising, raising awareness etc. You're not alone.

Also, special good wishes to you Leslie for your op on Wednesday, I hope it all goes smoothly, your recovery is swift and you feel the benefits very soon afterwards.

Good morning lacies. It has been a while since I last interacted with any of you, but I do pop in every other day to check on you all. I am hlad the support is as great as always. I have a terribly bothersome upper respiratory viral infection which is causing me a terrible cough, but otherwise I am ok.I wanted to wish leslie all the best for your upcoming surgery. I hope it makes a big difference. thinking of you and all those awaiting procedures, test results and the like.

Morning all,
I've had a really positive time recently. My DB, although severely brain damaged is on track to be moved to a specialist unit with 1:2:1 help. The staff at the hospital have been amazing and so supportive.
I met up with a group in RL of women with breast cancer, which was so helpful and they were lovely.
Counselling for my DD will start in the next couple of weeks. We spent yesterday doing a long cycle ride, which although tiring was good fun and very bonding too.
I've booked a henna crown for the week of my last chemo, which is at the end of this month so feels like the end is in sight!
So sharing some positivity as I feel all I've done is moan recently!
leslie good luck with your op. I crochet as my knitting is too slow! I've got to package up my squares for Chernobyl then I'm going to start some smaller ones for Candy hugs.
royal nice to hear from you again, hope that infection clears up soon
flippy well done on getting the cold cap issue sorted, hope the next 5 weeks fly by for you and is trouble free, but not hair free!
freddie waiting is always the worst! As Leslie said it's unlikely to be growing. Funny about you DS reaction my DD (6) is a bit obsessed with my boobs and has names for them she is most upset that one of them will be taken away!
deusch hope you are having some time to relax before your op- javabeans tips are great.
rocket sounds like the radiotherapy has been working better than you expected. I hope you are not too sore
to all

Halfbaked it's great to hear so much positive news I'm glad you've got real life support and that your brother is making progress. I hope he gets on well at the specialist unit. The henna crown sounds fantastic!

royal it's lovely to hear from you. I'm sorry to hear about the infection. That sounds nasty I hope you feel better soon. It's been a bad winter for infections. Lots of people seem to have had colds that turned into chest infections or lingered for months. Hopefully the warmer weather will put an end to that just in time for hayfever season

1234hello thank you for your good wishes. It's lovely to know that we have a network of lurkers willing us on. And good luck with your fundraising you're fabulous

I hope everyone's having a relaxing Sunday. I've got really bad stomach cramps. I think it's a side effect of my antibiotics. I've tweaked my other drugs and smothered myself in Tiger balm so hopefully it'll resolve itself soon! I've been sitting out in the sunshine but with my head in a bucket as I've been retching all morning. Hopefully I didn't spoil my neighbours' enjoyment of the good weather

I'm indoors now watching a monkey documentary. It's very relaxing and totally fascinating.

mrsrhod are you still lurking too? I hope all is well with you :)

Hello everyone!!
I've just got back from weekend away...which was blissful....long walks in the countryside somehow very restorative and peaceful...got thoroughly over excited when I heard a woodpecker... I'm such a soft townie!!!

Flippy...hope cold cap is still doing it's stuff despite them buggering you around. And er advice from someone going thru the same is v v welcome to me...please tell me more about vitd and iron etc etc and any supplements you'd recommend.

Half baked...so glad end of chemo is within clear sight and slightly (er very) intrigued as to what a henna crown is...i have princess images!!!. Also v sorry about your brother but glad he's being well looked after. blimey you're going thru a lot at the moment.
laughing about your dd naming your boobs..soooo sweet...

Leslie...the very very best of luck for your op

Chewing...thinking of you.. .

And everyone else too. Hope everyone is as well as can be expected...im so glad to have "met" such a supportive group.....

Xxx

Happy Sunday evening everyone.
It sounds like some good weekends have been had which is lovely to hear. The weather has been warm and nice here. Dd is all recovered. Spent yesterday pottering at home and at a local cafe with our neighbours and kids. Today was my turn for a lie in and the rest of the time was spent making an entry for the Easter egg competition with DS and a quick trip to the local pool with him and pottering in and out of the garden. So it's been lovely.
Been feeling a lot more relaxed since the CT results came back and very grateful to the posters who have said they hope I can relax and enjoy Easter. Far from being trite or silly, I feel like it's given me permission to let it go a bit. I need that sometimes, otherwise I feel like I'm tempting fate by being too cocky. Anyway, I have my birthday, the end of term and a few days of family holiday to look forward to before the op so the next 10 days will be nice.
Right, here goes. If I get mixed up, I apologise in advance.

Leslie - hope you're feeling a bit better now and the run up to the op goes smoothly. I have had surgery to removed a 2.5cm kidney stone, which was longer than this op will be but I think the most difficult part of this will be the emotional impact/significance. I am grateful for any tips so thank you for pointing me in the right direction.

Freddie - glad you've had a nice weekend. I'm sure your son isn't too shocked by your scar. Did you get any of the info about talking about breast cancer with your kids from the nurse. I was given a load of stuff from breast cancer care and it was useful to have a read through. I think it's all downloadable.

Chewing - hope you are enjoying some sunshine and a different space.

Flippy - I am (or was) a teacher of German, before I had DS, although embarrassingly there is a mistake in the username; it should not have a capital L. I created the account when I was pregnant and of all the things, pregnancy interfered with my linguistic capabilities! Glad that at least, you managed to get in touch with someone to sort the issues. It shouldn't have been down to you but good for you that you did.

Rocket - glad to hear the skin is looking better and the consultant is instilling confidence.

Little grey - hope you've had a good weekend with your little ones.

Almay and Royal and anyone else who's been feeling grotty, I hope you're feeling better soon.

Halfbaked - I saw someone having one of those henna crowns on Facebook! They look brilliant. I hope you enjoy the experience.

If I've missed anyone, I am sorry but here's hoping for a good Monday xxx

Hello everyone
I posted here a year ago when my sister in the Uk was diagnosed and everyone was so helpful now its my turn unfortunately I got diagnosed about a month ago so been very stressful all the endless test etc
I am in Australia but now have started neoadjuvant chemo FEC to try and shrink the tumour , I have only had one round so far and feel fine so much so that I hope its really working , I also did the cold cap which I didn't find so bad but that was because i was sweating so much I couldn't feel it at first .
I was really dreading telling family in UK especially poor Mum now she has both daughters with BC but my sister has been an amazing support
I have been reading throughout the year to get tips for my sister but now for me too , Thanks everyone

Oh Aussie, what a rubbish turn of events. I'm glad that you have been able to start treatment. I hope it does exactly what it's supposed to. It's good to hear you've felt OK so far and you have support from your sister. Hope you have a good day xx

Hello again. Thanks ladies.
Aussie, I remember you. So so sorry you have been diagnosed as well :( I totally understand how you feel about telling your mum especially you not being in the same country as her, but seems you are coping well which is very helpful. Hope all goes well.
Have a good day all.

I don't know if its because I haven't had surgery or the enormous amount of meds they give you in case of side effects that so far I feel fine, I didn't even find a lump but it showed up on routine mammogram which I thank my amazing GP for making me go to yearly , otherwise I wouldn't have gone for another year, My sister said her oncologist doubts any genetic link just bad luck and so common ,
Here the funding for BC is big and I have been sent a massive load of stuff and have had lots of calls from breast care nurses so I feel quite well looked after which is good, Hope everyone has a good day its very wet and miserable here in Sydney today!

Morning all.
I am back from my hols but not caught up yet. Had a lovely time in the sunshine and was feeling very relaxed
The feeling has not lasted as despite being told I could start the next lot of treatment in 1-2 weeks it now seems to be 5-6 weeks I am absolutely furious as with my very short prognosis I cannot afford any delays. I have sent a strongly worded email and my specialist nurse is currently looking into the various points I have raised. I have had enough now as there's been too many problems since the start.
Hope the rest of you are having a better day than I am.

Hello lacies - best wishes love & hugs to all of you. Just came back for the first time in a while and saw the henna crown. Googled it and wow!! I would love to have this done (I think!) but don't know how to find someone to do it. I'm not far from Birmingham so plenty of henna artists around but mainly for weddings etc. How did you find yours halfbaked?

Best of luck for your op Leslie. Thinking of you and all the others here.

Hi leslie, I'm still around. I check in a couple of times a week and am not as in touch as I used to be. I hope your surgery goes well and life is more comfortable afterwards. You're amazing for keeping this thread going, I wish I had your memory.

I'm waiting for my 3year mammogram next week. Last year I managed to get the results by the end of the week but this year it will be Easter weekend so I expect a longer wait. The actual letter took nearly a month to arrive, I can't wait for that.

Aussie I'm sorry to hear your news. Fwiw, my cancer couldn't be felt either. It appeared on a mammogram when I was being checked for a different lump which turned out to be nothing. I was between mammograms and things would have been very different if I'd waited for the next one. As it was the lump was only eleven mm and very treatable. Of course, that doesn't help with the anxiety especially at check up time.

Very best wishes to everyone else especially chewing, I'm pleased to hear you're still up to fighting the system but so cross that you are having to. You are a textbook case for things going wron, it shouldn't happen.

Hi Royal, hope you're feeling better too.

Hi mrsrhod everything crossed for your mammogram it's rubbish timing with the Easter weekend

Argy how have you been?

chewing I'm glad you enjoyed your holiday but not the news you wanted to come home to they've really been messing you around. I hope your nurse can get things sped up. Would you consider changing hospital? I know it would delay things, but probably no more than your current team

aussie welcome back, but I'm really sorry about your diagnosis I remember you and your sister. How is she now? I'm glad the care is good in Australia

Deutsch definirely relax as much as you can. I know the feeling about tempting fate. But cancer doesn't know or care if you're cocky or anything. Not that you are, I'm sure! :)

freddie your weekend sounds lovely. I saw a Guardian article about lip fillers and thought of you

Thank you everyone for your good wishes for my surgery :)

Good luck for Wednesday Leslie

Following my rant my new treatment now starts next week . I have considered changing hospital and that is still an option if there are any more delays and faffing. I am not a happy bunny.

Good news, but sorry you had to fight so hard for it!

Im new to this thread and still waiting for my official diagnosis but have been told that as my tumour is very fast growing and (probably) rare I may need a mastectomy.

Ideally I'd like to have a double mastectomy even though the other breast is currently symptom free. This is partly preventative and partly cosmetic as I'm not 100% sure I'd want a reconstruction and don't want to be left with one 34E cup breast.

Can anyone tell me if it is likely the NHS would agree to a double mastectomy rather than single? How about privately?

Daxaki welcome, but sorry you need to be here hopefully someone else can give more helpful answers shortly (I don't have breast cancer)

Do you have a specialist breast nurse? They would hopefully be able to advise on the policy/process at your hospital

I've been pretty good thank you Leslie. Had one lot of chemo, 7 to go then radiotherapy after. Seems like a long haul but I expect I'll get used to it.

Daxaki I wouldn't assume that your team would be negative but it may be a good idea to float the idea early on. They should certainly be able to talk you through options - and remember there are many many options nowadays. Best of luck.

Evening all, aussie what awful luck, I hope you continue to feel fine.
leslie all the best for your operation on wed, I hope it goes all to plan and you feel much better afterwards.
chewing I'm aghast at your terrible treatment , so glad you can start the treatment next week, but it's just grim that you have to spend precious time fighting for every step of the way.
daxaki I had breast cancer but have no experience of the mastectomy question. I'm sure someone will be along soon who has though.
mrs best wishes for the mammogram, I think you asked me if there were any other side effects from the letrozole? Apart from the half a stone in 3 months (That effect after a few years could be traumatic...!) This last week or so my fingers have swollen on my right hand, I have a suspicion this might be cording related (hopefully not lymphedema) but I may need to speak to the BCN. I usually wear a ring I inherited from my lovely grandmother a good 25 years ago on that hand and can't at all at the moment which is upsetting me irrationally.
it's 13 months since my lumpectomy and sentinel node biopsy and I still have a blue breast. That's not really something you can share in real life so I thought I'd share it here...
Waving to everyone I've forgotten!