So pleased to hear you are a stable Mabel, long may it continue! Always good to hear such news.
Love Helen x
Just seen your post to Marie and I'm wondering if you put an emoji, or two, in your PM? A while back I couldn't send PM's even though I had sent them to the person before. By a process of elimination the digital team from BCC suggested this was the problem - and it was 😊 Emoji's on the main, public, forum are OK as you can see.
Janette, what fantastic news...keep celebrating.
Funnyface...hope you are feeling a little brighter now. I know its a worry but your scan could have shown a lot more so try and be strong...like Carolyn says yo have coped so well for so long....
Carolyn..i wish i had your sense of humour...your 'tissue' incident had me in fits.
Hope everyone is as well as can be and sorry if i've missed anyone. xx
Bit behind on this thread so forgive me.....Andrea what fantastic news...you were right to share it! I'm sure the fuzzy head the day after was worth it!!
Avrelia....sorry you have had to join us. I had fec as my first treatment for primary sb and was qite ill on it but i had an antisickness drug called aprepitant and i had injections for neutropenia so there is stff out there if you should need it. I found losing my hair very hard (been through it twice now and looks like a 3rd time may be round the corner) but , although i tried, couldnt face the cold cap after my first attempt, although many ladies find it ok. You will get through it though and hopefully have success. Keep posting. x
Hello Janette, congratulations! Well done, and long may it continue! Stable is a good word to hear in our situation - wonderful.
we are a couple of wimps arnt we ?? When I saw Oncologist six weeks ago .. and he said stable scan etc -- I burst out crying and he produced a box of tissues from no where and do you know what I thought .. ugh Tesco own brand .. surely I deserve some nice soft aloe vera ones or perfume ones after all the stress !!
What am I like ?
Hi Marie, thanks for the PM I've tried to reply but it won't let me?? Hope you have a wonderful day tomorrow, wishing your daughter every happiness for the future 💑👰👰
Hugs Janette xxxx
Hi Carolyn, no I don't see scans etc, really do not want to either! I know I have cancer and that is all the info I want thank you very much, that and my stable results every 3 months is enough for me. I know some ladies want to know all that's going on and fair play to them but it's not for me! No she didn't elaborate on the hole and I didn't either, I think she knows I'm a stress head so keeps thinks brief.
Well dropped Heidi off at the "hairdressers "she wasn't very happy so think she will be a sulky pooch when we pick her up!!
Hugs Janette xxxx
Great news Janette, huge sigh of relief I'm sure!
Enjoy your day with Heidi, the perfect arrangement 🐶😊
That is excellent news Janette! Learnt today of someone who's been on Letrozole for 10+ years! quote nice to hear!
Yes hats of to letrozole! Off to bed now I'll save my celebratory drink for the weekend, my head is still banging hoping it will be gone by the morning now results stress is over!
Night ladies Hugs Janette xxxxxxx
Evening ladies, well Janette is AKA "stable Mable" yeyyyyy! Onc very happy with tumour markers at 35 she said a person's normal range is 30! Scan shows still stable mets. I did mention my painful hip and she said at the Christie they are now very close (roughly 6 months) to targeted radiothary which could work for me, I've already had radio in that area so can't have anymore. Also took in a print off of some simvastatin info which she read and said that at the moment there isn't enough research and evidence to say that it would benefit us secondary ladies.
Hugs Janette xxxx
I know exactly how you feel Janette, I mentioned to my BCC nurse that I wasn't sure I could sit in a waiting room again, waiting for results and said to me, and I quote, 'I would be happy to see you outside of clinic time, at your convenience, to talk through the results, at least I can set aside dedicated time to give you and also I could discuss the results & way forward.
How lovely is that of her - these nurses really are the best.
I have bone mets in vertabrae L1, L2, L4 and T12, T9, T8 and T3 - so not good to read about the risk of paralysis
Keeping everything crossed that results today went well for you Janette.
Hi all, I am back from my first chemo, had been given two kinds of anti sickness tablets-domperidone and dexamethasone. Still not quite sure what the nurse said to drink first tonight, because the other one has to be started tomorrow. Anyway, I think it was the dexamethasone to start with today and go on 3 days. The whole chemo was not as bad as i expected, so, just to share to everyone who had not had their chemos yet-NOTHING to worry about. Be positive and all the side effects will be far away, except for the hair loss I think, but just think about the chance to have a completely new hair afterwords I wish I will not be blonde though.
Speacial thanks to nicky, I will surely book an appointment and check this out, although I simply want this country to give me my health back, no need of funds, really....
Andrea, when is this meetup in Sutton, share your experience afterwards please, where are you from btw?...
Carolyn, keep on moving and find something to keep ypur mind away from this ugly thoughts of paralysis, what do you like doing in your free time? Adapt this to your current state and you will enjoy, I am sure. Well, if you want to climb Everest, that might not be the ideal option, but ....
Sorry, if my humor is a bit strange, that is my usual way to get me out of the stress as well. I do like people to be happy and smiley, so please send me all your smiles and I am sending lots of love and good vibrations to you all ladies.
Hi ladies, miserable wet day here, just jumping on to say hello before I go to the hospital for results 😨😨 heads still banging, couldn't really sleep last night either......need it to be a few hours from now when it will all be over and done with! I said to hubby I wish he could just go for me and tell me results!
See you in a few hours, hugs Janette xxxx
Carolyn, I had a little snooze! I think what us freaking me out is that since this time last year mg legs got weak.I had been blaming it on the ibrance and letrozole. Chemo can weaken your muscles, metronome has made my joints so bad that I sit around more. The Dr said the steroid can weaken me. I read that with the T10 vertebrae that if can weaken your legs or paralyze you. So the weakness thing is flipping me out. I can't step up one step without a rail to hold on too. I have a friend that I don't see very often who is a physical therapist. She is making me up an exercise routine. Going to try and get leg strength back. FF
Very tired tired today! I have weaned myself off steroids. I'm sure that's why I'm extra tired. Bone scan results in. Only one met in spine at T10 and its stable. It scares me though. I guess I got used to my lung mets and adding something else t o the mix bugs me. Ok back to bed I can't hold mg head up today. I didn't get to read postings, everyone hang in there! FF
It is ages since I posted on here but have been catching up with everyone's news. We had a holiday over the 'other side of the pond' which we were lucky to take. It was for my brother's (second) wedding and was a lovely family affair with 14 of us travelling to New York to be there. Very exhausting as the weather was so hot and humid but great to share with them. Over the 8 years I've been living with secondary BC I have seized the day and made sure we do as many nice things as we can. We book holidays ahead ie in between scans(!) but always book them so we can cancel them, that way it takes away the stress and worry in case we have to cancel (which we've had to do on several occasions) but gives us something to look forward to especially whilst I'm feeling well enough and mobile enough to enjoy them. I agree with Andrea about the expiry date!
Anyway enough about why I've not been on here.
Janette, good luck for your appointment later today, no doubt you are a bag of nerves, as we all are, waiting for results. Fingers crossed for you. On a different note thanks everyone for the Hoover debate! I'm looking to change by older drag along one so any reviews have been gratefully read and will see what you think Janette once you get your new one.
Avrelia in answer to your question about benefits then yes you should be entitled to them. Patients having chemo can get ESA but I'm not sure of the actual rules, it may be if you've had to reduce your hours but it would be worth checking with MacMillan or another specialist advisor to find out. Also you should be able to get PIP whether you work or not, again they should be able to advise.
Helen12, sorry to hear about the osteonecrosis. I know this is a real risk when taking bone strengtheners but don't have any experience or advice I can offer. It's certainly not like the clicking that I know I have in my jaw.
Hi to all newbies and oldies, hope you are coping with with either treatments or the wait whilst you find out what treatment you will be having. It's a tough world is SBC ladies live in but this forum helps so much with support, advice and general chit chat which helos us know we're not alone.
Hi alay got out of hospital yesterday.. Pneumonia and a pericardial effusion (fluid around the heart).
Was a lovely ward and I quite enjoyed my time there! Feeling better but the heart thing needs monitoring.
Janette - fingers and toes crossed for you tomorrow :-)))). Hoover sounds good! Can't sleep so might go browsing in a mo.
Welcome to the new ladies, frightening times. I've been here since Jan 16 with bone and lung mets and once I got my head round things after a couple of months I've been having as many adventures as I can squeeze in.
Infact the next one is on Monday.. Me and new hubby are hiring a VW camper in Sidmouth and have 5 days of fun ahead of us but no plans. Carolyn or anyone who knows Devon/Cornwall.. Any ideas of where we could go.? I'm after quaint towns, nice scenery, not too bothered about shopping (as hubby gets too bored!) maybe a place of interest? Like a good museum.. Well he does! Happy to drive for a few hours each to get about.
Note.. I am in a wheelchair so no massive hills!
Any ideas greatly received.. Apparently I'm in charge of navigation.
Thanks Carolyn, results appt at 3.45 tomorrow so have got all day to sweat it out!!! I've had a banging headache all day think it must be the stress of tomorrow! Well, I have finally ordered a new vacuum 😆 oh Carolyn you won't believe what happened last night, I was getting square eyed keep googling hoovers and reading reviews I said to hubby I've had enough of looking now let's go to bed and watch TV , 10 mins into Law and Order SVU and the TV blew 😁😁😁 so now I'm on the hunt for a new telly too!!
Hope everyone is doing okay, hugs Janette xxxx