The Lacies are back for cancer support thread 56 - all welcome!

[WhatWouldLeslieKnopeDo]

Hello again, and welcome to our 56th thread. Some of us have been here ages and others have just joined. I hope you've all made it safely over to the new thread.

An extra special welcome to anyone who is lurking and feeling a bit shy. We are all quite friendly and we definitely don't bite, so please do say hello if you'd like to.

All are welcome here. We started off as a breast cancer support thread many years back, but all cancer types are welcome and at any point in the "journey", even if you haven't yet been diagnosed. We have all had different experiences but there's almost certainly someone here who will understand how you are feeling.

Our previous thread is here.

I have started the new thread a little early, and I will explain why in a moment.

Morning Lacies. Hope everyone is feeling well/better

Thinking of you today Chewing. Everything crossed for a good result and hope you get the spots and pins & needles sorted.

Good luck today chewing

Waving feebly to everyone else from under my blanket!

phew finally had a chance to sit down and catch up on the thread, Hi all! I'm sorry others are suffering from the hot flushes and poor sleep too, i thought it might just be me being a bit odd! I'm getting less and less sleep every week, managed about 4 hours last night sigh..... I'm assuming it is the Tamoxifen.

Tutti, it sounds very full on for you at the moment with appointments and surgery, it does sound very optimistic of them to book your scan for the morning after the op, fingers crossed it all goes smoothly.

Chewing, good luck for today, will be thinking of you x

Good luck too to all those back at work / uni. I feel a bit jealous as i was supposed to be starting my diploma in counselling, but I've deferred for a year as my head isn't in quite the right place at the moment. Going to have my hands full though as picking up a puppy tonight - miniature schnauzer, don't have a clue what im doing though, never had a puppy before!

whatwouldLeslie - waving right back at you!

Well, I had a feeling my luck would run out at some point
The good news is that the lump has shrunk by around 50% and I won't need surgery but rads instead. The bad news is that there is a small area of cancer in the base of my spine. The chemo may blitz it but I will have more tests once chemo is finished so they can decide the next steps, possibly rads on it. Bit upset so I had a nice chat with the BCN.
Had to have another blood test as bloods are a bit low for chemo at the moment which is annoying. On the plus side at least the chemo is working.

Oh, onc is not too concerned about pins and needles at the moment but I'm to let him know if it gets worse. The nasty spots are due to chemo so can't do much about them.

Missy, would this be worth a try ? I know the whole body gets soaked with the flashes, but perhaps keeping the head (hypothalamus) cooler will help. This is a bit of Tutti's clutching at straws really good science

<a class="break-all" href="//!www.jmldirect.com/at-home/home-accessories/chillmax-pillow-cooling-gel-insert-for-all-pillows/?gclid=Cj0KEQjw0rm-BRCn85bm8uS-zK0BEiQAHo4vrJQhfUf-O8xRFbDd7PlVZQIJ5-KUHsRARjSQ5hfW0QkaAgYc8P8HAQ&gclsrc=aw.ds" rel="nofollow" target="_blank">Chillmax Pillow

Might be an idea for keeping hands and feet colder for those on chemo drugs with neuropathy side effects.

chewing a mixed bag there you have! As you said, it is reassuring that the chemo has been effective and hopefully will zap the bit in your spine. You managed to dodge surgery which is great,but I can totally understand that you are feeling upset. I hope your bloods behave and let you get on with the chemo. Best wishes.
leslie holding your hand as you snuggle up under your blanket.
Struggling with an extra bothersome sinus headache today, but after what I have been through this is nothing!
sleepy you are in my thoughts.

Royal, inhaling Rosemary oil is really good for sinus headaches,
but you shouldn't use it if you have been diagnosed with any heart condition; and I would check with the doctors first as well. If you haven't got oil, bruise rosemary stems/leaves and pour boiling water over.

Oh Chewing. I missed your posts as I was typing. Certainly not what you were hoping for, but we're in that twilight zone where "Not as bad as it could be" is often what we get.
Hopefully the bloods will pick up soon.

hello again, its been over a year now since i had my surgery -left mastectomy- i lurk here often, the wealth of information has made this past year so much easier!

i am now about to start reconstruction, taking from my stomach to recreate...loads of information thrown at me but today i suddenly started wondering whether i will need to wear 'big' pants afterwards !

Chewing - Must have been hard to get that news but once you've had time to mull it over then hopefully it will feel more manageable. Definitely some positives in there anyway! And come on bloods sort yourselves out!

Tutti - I've heard of those pillows and think I need to treat myself to one

Lookingforbaubles - I would be very interested to follow your progress as you go through reconstruction, I can't make up my mind whether to do it or not. I'm 8 months post surgery now and still can't face the thought of more. Was it always in the plan for you?

chewing I'm sorry about your news. Hopefully the chemo will do the trick, if it's been that effective on the breast lump you've got to hope it's being as effective elsewhere.

baubles I had a mastectomy and DIEP reconstruction 4 weeks ago. Yes you do have to wear big pants night and day for 6 weeks afterwards! Plus a supportive bra 24x7 for 4-6 weeks.

I'm not out of the woods recovery wise yet but so far I'm really pleased with the shape of my new breast. Not so keen on all the nerve damage in and around my armpit (had node biopsy at the same time) but have had advice/reassurance on here that I will get on top of it. Happy to answer any questions if you like

missy good luck with the puppy, sounds like you will have your hands full for a while!

Ah, bugger chewing not the news you wanted

Welcome to the extra exclusive and extra shit branch of the cancer club I'm afraid we don't have a badge or secret handshake or anything exciting like that

Good news about the chemo shrinkage and not needing surgery. Fingers crossed for the bloods too.

missy good luck with the puppy!

looking I wore big knickers for a while after my surgery (bowel) as my stomach felt so vulnerable

royal ouch, I hope the headache wears off soon

Keeping Sleepy and family in my thoughts

Thanks all
Missy I love miniature schnauzers. We plan on getting a puppy soon (not fully decided what breed yet) so you must let me know how you get on.

Afternoon all, chewing sorry it wasn't all good news and quite understandable to be a bit upset, I hope your BCN was helpful.
Hugs to anyone feeling poorly or low today.
I've been to work this morning! New office so new much shorter journey, none of the kit worked (obviously!) so I have some new friends at the IT help desk getting it sorted for tomorrow. I was so nervous but everyone was lovely but my brain now feels as if it has been run over by a bus
I had to lie down for an hour when I got home and I'd only done 3 hours..

Chewing I'm sorry that your appointment didn't bring the news you wanted. I'm glad the chemo is working and hopefully will continue to shrink the cancer. I hope your blood improves soon. I found that once my counts started to improve they jumped up quite quickly.

Baubles I have had a mastectomy without reconstruction, so I can't help. On a related but slightly different topic was drawn attention to a very disturbing NHS cut proposed in an Essex CCG of no longer providing breast reconstruction after mastectomy. They are doing a public consultation on this, but in their survey they simply ask Do you think cosmetic surgery should be available on the NHS? I think I lot of people will say no to this thinking it refers to improving the appearance of normal breasts and noses rather than reconstructing a very disfigured body. In fact the whole document of cuts being proposed is very disturbing. If that is the way the NHS is going I am very concerned.

Missy I would love to see a picture of your puppy. That's really exciting.

Outlaws I'm thinking of you for your results appointment. Is it tomorrow?

thanks for the big pants advice!

it was left very much open to me whether i wanted reconstruction - also which type i would like, i was given the options and allowed to choose after a consult with a plastic surgeon - im in south wales if that makes a difference.

i was in 2 minds about the reconstruction - the diagnoses and mastectomy were all done with in a matter of weeks in a professional whirl wind but this is now a choice of mine- im not looking forward to the drains again

ive been given a time frame of going in 'after October' - i was also told a second surgeon has to penciled in as they work in pairs for this type so a slightly longer wait.

Hi Chewing. I have been following your progress (not in a stalker kind of way). We both had our initial breast clinic appointment on the same day back in June. I was lucky though and just had cysts, which are still there and remind me daily of what could have happened. I'm sorry about the spine news but hopefully the chemo will kick it's arse to kingdom come.

Silly, you are so kind to remember, I can't even remember my name at the minute. I keep reading and rereading the same threads and posts repeatedly and feeling I've never come across them before. Sigh.
Yes, it's tomorrow (today rather, as it is 2:35am - am up with unsettled baby, though truthfully I am far more unsettled than he is!). In almost exactly 12 hours I'll know more than I know now. I am petrified.

Inwiththeoutlaws my thoughts are with you. Hope you get reassuring news.having a baby does not make it any easier I can imagine!
Leslie, thank you. seesm it is sinusitis as it has not aubsided. well DS2 is back to school now( massive relief!) just sniffles and nothing to worry about. Looks like I got the full hit!
tutti steam baths are sort of a part of my life! and I do add Rosemary yes every now and then, but it only gives me temporary relief. The thing is,because I have a thyroid problem, i can't take antihistamine, cold medication or sinus meds! Lovely eh?!
Wishing you all a good day!

Morning
pepper good luck with your second day back. I can imagine how tired you must feel - rest up where you can.
Royal hope you start to feel better soon.
Nervous lovely to hear from you again . I am also hoping that chemo kicks it's arse. I have been told that it will definitely come back though but obviously nobody can tell me when. It puts your life in perspective and I am trying to make the most of each day now and not worry about the small things any more.
I shall be calling hospital first thing to check my bloods. The onc said that if they are still rising it will be ok to have chemo but maybe delay it by a day or so. I am hoping to go away for a couple of days next week so don't want it delayed by too much.
Outlaws good luck for this afternoon . The waiting and uncertainty are the pits so at least you will know one way or another.
Hope everyone has a nice sunny day ahead.

Hi chewing hope there are no delays and i hope the docs are proven wrong about the cancer coming back. Why do they see so sure that it will anyways if you don't mind me asking!

Good question royal which I didn't think to ask at the time. I think it's because it's an aggressive type and I now have a secondary. The onc had previously said that it had the tendency to hide in the bones as has now been proven. It does respond well to chemo and I am pleased that it has shrunk by so much after just 2 sessions. I am a very unusual case and nothing has been straightforward with me so far though so any treatment outcomes are difficult to predict. I will ask more about this when I next speak to the BNC. As far as I know you can't cure secondaries - just keep them at bay for as long as possible but welcome any advice from anyone who knows more.

Keeping it at bay is at the heart of most cancer treatment for secondaries, very true. If they can control it and keep it contained which luckily the chemo has proven to be doing in your case-then it will be like Amber keeps saying, more like any other disease( hypertension, diabetes etc) ..and many many people have lived long lives like this, but I totally totally understand why you feel you need to rethink your priorities etc..
I am curious about what makes a cancer aggressive and how soon do they get to know? For example my tumour was small,much less than 2 cm, but I had A LOT of lymph node involvement and I wonder if that would be an indication of my cancer. Being "aggressive"? Sorry if I am being totally helpless and making things worse! I guess I am just thinking out loud here really.
I think there is much going for you because your cancer has responded so well to the chemo and hopefully the chemo will continue to exterminate what is left!