Forgot to add, heard from Christy, she askedto say hi to you all. She's been feeling rough emotionally and hasn't felt up to posting, but is a bit better now and hopes to be back with us soon
FEC 5, Day 13
Wow – not been on for a few days, laid low by usual ses (much better now, just mouth and blurry eyes) and I return to find lots of news from Maisies who’d only been using fb recently – it’s really lovely to catch up with you all!
Annie, fingers crossed for being able to really enjoy Christmas! Sounds like the green shoots of recovery re your hair!
Pendragon, if the counselling makes you cry that shows that it’s working – and once you’ve done the crying it might be easier to discuss things. Brilliant news that the chemo has finished, hope you will gradually start feeling better and can enjoy Christmas
Roller you’re right, daughters are wonderful. It’s a real problem about your parents – I wonder if it might be better to have them cared for separately, as you say their needs are so very different, and living together again might distress them both. But it’s important for them to see each other regularly, as sadly the time will come when mum doesn’t know dad anymore.
Lols, glad you’ve got support from son’s girlfriend. Sons are wonderful too, but it’s a girlie thing in the end! Great to hear about all your energy – but don’t burn yourself out. I had agonising mouth ulcers but cleared up after a few days almost overnight, hope yours are better soon.
Spikeyred, glad you can really look forward to Christmas!
Susie, Gilly, good to hear from you. I thoroughly recommend the LGFB pamper sessoions!
Chezz, thanks for setting the ball rolling with fb Maisies, lovely to hear from them all. Hope you’re stilldoing ok. Good old Steve, it’s heart warming when friends and family show so much practical support
Lynsey, glad you’re cping with tax so far. Nearly there!
Gilly, sorry you’re having so many complications. Good luck with results on Thurs
Anne-Marina, good to hear from you, best of luck with your recovery
Jacquie, may your wish come true. I’ve just made 2 Christmas cakes, one for us, one for lovely mum in law. Very pleased with myself! Fab fundraising, well done, and well done or having got through it all, and you too Tylerrose
Whiterose, enjoy your free December and best of luck with results and whatever surgery follows
Deb, yes Maisies are all nearly there, Hurrah!
Love and hugs xx
PS Ladies, I just had to tell you that this morning I noticed a tiny, new hair sprouting on my upper lip!
Rather than whip out the tweezers, as I would have done in the old days, I'm so thrilled to see it that I keep stroking it to make sure it's still there! Just wish the hair on my head would start sprouting as well...
Thanks for the support, Anne-Marina, strange how the different types of chemo affect us all differently! It's a really horrible feeling, isn't it, when it makes you so ill? I'm still recovering five weeks later - there was no way I would have had any more TAX.
Good luck with the rest of your treatment. x
Hi there everyone - just popped in from FB Maisies, haven't posted for a while but have been keeping an eye on the forum. I'm nearly there now, 3 FEC and 2 Tax under my belt with just one more Tax on 4th Dec. Hooray!!! I just wanted to say what sympathy I have for you Annie62. I had a terrible time with my first tax and really felt like giving up. I ended up in hospital with neutropenia and an infection for a few days and felt so ill from it I really didn't think I could face having any more and going through that again. But luckily, I did manage to get back to almost ok just a couple of days before my next was due and decided to go ahead. Mind you I was petrified I was going to be really bad again, but so far so good - touch wood! I'm on Day 5, and although I do have the bone aches, stomach ache, sore mouth etc., I really don't feel anywhere near as bad as last time. Maybe we were just really unlucky. But I just wanted to say Annie I don't blame you for deciding to stop, sounds like you had a worse time than me and I was sorely tempted. I don't think you bounce back as well when you are older, I've just had my 60th birthday (in hospital!) and am really feeling worn out now.Just hanging on by my fingernails now! And it certainly makes you wonder if it is worth going on after 4 - there is so much difference of opinion between different consultants. I think I'm just more afraid of not having the last than having it! Anyway, sorry its a long post - just wanted to wish all you forum Maisies good luckxx
Morning Maisies, my feet aren't brilliant either Ju, onc reduced the dose of my last 2 tax as numb toes and heels plus sore discoloured nails. Just hope it goes once chemo out of our systems.
Going round to my Mum's later to stir the Christmas puddings and make a wish! Had no idea what this year was going to bring when we did this last. Have a good day all of you xx
Morning maisies, good to hear from you Ju, your right we all need the push onwards from the support behind us, it all gets abit much sometimes. We are all nearing the end girls after a very long journey, none of which would have been possible without the wonderful maisies and your support. Csn't wait to see you all next year when we get our weekend organised love you all x x
Morning Maisies, forgot to say last night, held a fundraiser last Saturday for breast cancer care and made £250.00! My son in law works for a very big company who will match this so just waiting for approval but £500 is a good total for an afternoon's work! X
Evening maisies, sorry I haven't been on for a while. I hope you are all doing okay and nearing the end of your chemo now. I had my 5th last Fri and my last one will be the 29th nov yipee. Rads start on 20th dec but at least there will be no more chemo thank god. Fingers crossed se's have been kind to you all and not too vicious. Take care girls and I will keep in touch when I get back from Cyprus, but taking a break for a week and fit to go thank god love to all x x
Yes, indeed I did, Gilly - I've never felt so ill in my life! I was fine when they administered it, but three days later the back pain set in and my temperature soared. Had to be admitted with neutropenia and also had to have a blood transfusion. I could hardly walk when I left hospital and am only just starting to feel myself again some 5 weeks on.
My Onc did give me the option of having 2 more FECs, but when I said I was in two minds (although I'd have been fine havin 6 FECs without the TAX!) she said she'd be happy whatever I decided and that 4 was enough.
I'm glad I stopped when I did, but have such admiration for those of us who have carried on and reached the end. As they say, chemo affects everyone differently and I honestly think another dose of TAX would have killed me. xx
Hello girls founder member checking in! Just to say chemo number 6 done! Just as well as my left hand is black and blue, they put cannula in first time the 7 previous times but it took 4 goes today. I had to keep going with the 6 as herceptin given alongside it. If I had had such a bad reaction as you though Annie I would have not wanted more tax either! I think it sounds like the right decision for both you and Gill. Glad you got your Dad sorted Roller been a lot for you to deal with as well as chemo. Ju hope you're ok now one more to go for you as well? As I just said on fb it seems such a long time since we began this journey but I'm proud to have made it with you all lots of love xx
Annie, my onc said that there is no data to prove that 5 or 6 is better than 4 and even some oncs in the UK have now followed the states and only give 4. Some reckon that more than that does more harm than good. But I guess they all have different opinions.
My viens are cording and are painful. I have cording on my mx arm badly, but physio sorted that out. Breast nurse has said that if the cording in my arm doesnt resolve she will sort physio for that too.
Why did your chemo stop Annie? Did you have a bad reaction to the tax?
Good to hear from you, Lyndsey and Gilly R - like you, Gilly, I only managed 4 sessions of chemo, 3xFEC and 1 TAX. My Onc said 4 was plenty - thank you for confirming this! I also have shot veins and painful cording in my mx arm (which they insisted on using for the IV twice, despite my pleas...).
Have appointment for CT scan and planning for rads next Tuesday, then start rads on 2nd December, which means I'll have five days free before Christmas Day. I may be too knackered to do much, but at least it'll all be over, hopefully.
Hi girls. I, like Lynsey keep an eye on here every week or so. I have finished my chemo now, bowed out after 4 sessions, which is 4 more than I thought I would do!! Oncologist said that 4 was the magic number and if I was in the states I would only have 4 sessions anyway, so I was happy with that.
Had ct scan last night to see what is happening with these speckles on my lungs and we should know next Thursday whether they are cancer or not...eek! Its a bit scary but I need to know where I am at.
Then its on to herceptin and tamoxifen for me. I am doing the herceptin trial and getting the injections. Which is a good job as my veins are shot to pieces from the FEC. They are shut down and cording and quite painful.
Hope you girls are all coping as best you can. Lots of love to you all
Im going to go on fb and tell some of them to check in here as you miss them
jackie just finished hers today.
i went for the counsellin g session and felt good to just be able to cry for a bit. Going again in 4 weeks. Im much better todazy energy wise ran for 30 mins although was tired after.
has anyone heard from Christy? Gonna text her she seems to have disappeared.
Hope evryone else coming out of the SE black hole!!!!
thanks rollercoaster was beginning to worry it was something else to have major concerns about, the AF specialist had originall referred me in junly but that was around the time i was dx so i just didnt go was too emotional and worried atm. i know i should of gone but just couldnt face it, i thought it was another life threatening illness, thanks for explaining and yes i will ask questions of you dont mind!! as i said it nearly stopped my chemo today. thanks again angie xx
tax 12 day 1
just thought id let you all know finished chemo today just got to go back 3 weekly for herceptin, look good feel better next week then, radio planning week after.
nearly didnt go ahead today as calcium levels high again got tio see thyroid dr after finished rads, not looking forward to that.
hope everyones ok, feel really shattered today, back aches not too bad atm so having tea the early night maybe if steroids dont kick in.
love to all
hi im having counselling through macmillan and last week i just sat and cried, but still felt better when i walked out the door!! just go in with an open mind and see how you feel afterwards, my lady said was i getting anything out of our meetings i said well if i wasnt shed know as i wouldnt talk to her, seemed to satisfy her.
hopefully last tax tomorrow then week off with look good feel better, then rads planning. just hope no 12 goes ahead tomorrow xxx
good luck to everyone too xxx
How is Jacqui? I don't think she's posted on here since she decamped to FB - and how is Penny Crow? Such a shame we don't know how some of the earlier Maisies are getting on...
I'm still very low on energy, who'd have thought one dose of TAX could affect the body for so long? It does seem to be improving very showly, though.
Went to see Radiotherapist yesterday and had to wait nearly 2 hours to see her for 10 mins! Was not best pleased as poor old OH was waiting in the car - he prefers to do that rather than sit in the waiting room.
Anyway, will be having 15 rads after planning appointment, don't know when that will be, more waiting I suppose!
Good luck to everyone up for their last dose of chemo, and sympathy for those suffering from SEs and/or feeling a bit low. Onwards and upwards (though sometimes it just feels like it's one big long endless 'onwards' )
FEC 5, day 9
I’ve just emerged from a trip to hell on wheels with ses. But turned the corner now, can stay upright and back on laptop. Have just met a friend for lunch (a BC sufferer who’s now back at work) and that was lovely.
I know some of us are worried about money, spoke to a really helpful advisor on 0800 055 6688 who told me about 2 possible benefits, ESA and PIP – there might be a bit of help out there. Only one of these two, can’t remember which, is means tested.
Roller, really glad you had a good week and hope you’re now coping with the latest onslaught. Only one to go! I’m lucky, I’ve never had to have the jabs, and so far all treatments have been on time. Such a worry about your dad, but it’s good he’s realising he needs proper help. You just wait for the next crisis to happen don’t you? The photo album is a lovely idea.
Susie, you’re right, it’s great to know things are nearing the end – we all must have been dx about 8 months ago! Hope you had a lovely time with baby grandson.
Lols, been thinking of you and hoping no. 5 not too bad so far, nearly there now.
Annie, hope you’re feeling a bit stronger each day, it was awful all you went through
Chezz, thinking of you. Hope you feel brighter soon. We’re all bound to have ups and downs, we’ve been at this for a hell of a long time
Love to all long-suffering Maisies,
Ju Im ok bit more tired this week not managed to run or zumba but I went on a breast cancer walk today and we did about three and half miles and then I just had to have a hot choc with a shot of Baileys to warm up!! Hope you still doing ok and maybe rethink counselling. Im going tomorrow for my first session so will try and keep an open mind. Am scared if I start crying I wont be able to stop!
Roller what a lovely idea to do an album for your dad. Can they not be in the same care home???
Susie like the sound of shopping but dont feel I have the energy at mo!!
Everyone else is very quiet on here where is everyone??
Fran are you ok?? Meg how are you?? Annie I saw you had posted on July so know you are around
Tomorrow is last chemo for Tylerrose and Angie aka Pendragon and our founder Jackie finishes on Fri. Come on maisies the end is in sight