Kym - just to say good luck for tomorrow (SLNB), hope you get a good nights sleep, don’t worry you will be fine, it’s really not that bad, if I can do it anybody can! lol
Shelle - best wishes for your 1st chemo tomorrow, hoping it all goes well for you you should know from our little niggles kindof what to expect! It really isn’t that bad, I’m on day 4, sleeping well, eating less but ok, not feeling sick, but unusually emotional!
PP - glad you’re doing well as well! Hope you get a nice haircut to match the other side lol :o
I don’t post on here much, but I’m reading all the posts and taking everything on board! In fact, I’ve got a list as long as my arm as re buying stuff just in case of this, just in case of that, so that I’ll be well prepared for whatever the chemo chucks at me! I suffered horribly with morning sickness when I had both my children, so I’m prepared for feeling pukey - even tho my Onc has said they will start me off right away with the most expensive anti-sickness drug, whatever that is?
Paula (aka Daysie), I hope you’re feeling better. Your boob sounds just like mine - I’m convinced it’s getting bigger, and it’s so sore’ with the odd jabbing pain. My Onc reckons it’s the breast tissue reacting to the cancer, which she thinks is actually much smaller on the scan - my surgeon says you can never tell until ‘you go in’ in surgery. Who knows? I will ask, when I have my 1st chemo next Monday, what reaction to the boob I should expect. But I don’t know how on earth your Onc could say your chemo wasn’t working when you only had your 1st last Friday!! My Onc said not to expect to notice any difference until at least after the 2nd lot! Xx
Gill13 - I’m thinking about trying the cold cap. My Onc thinks I should give it a go, but I’ll ask their opinion when I visit the chemo suite on Thurs. I don’t have thick hair, but lots of fine. I wouldn’t mind, but it’s only just started growing back after thinning after a particularly stressful 2 years or so. Sods law!
What do you think to it? Is it just about bearable to wear? Do you really have icicles on your head when you’re done? I know you are still liable to lose some hair - just not all of it.
Bonch - I am also having EC ( x 4, then Docetaxel x 4). I’m in Preston, and have no idea what the difference is between that and FEC, which is what most people seem to be having. Then it’s a mx, followed by radiotherapy.
I’m ready for Monday - then I’ll feel I’m on the positive side of this oribble journey, that something is being done to eradicate this b*****d!!
Best Wishes to everyone, so glad this forum is here - don’t feel quite so lonely!! Friends and family have been wonderful, but unless you are standing in a pair of these particularly nasty shoes, no-one can REALLY understand what you are going through!
Feeling a bit of a fraud after 1st chemo as haven’t had much in the way of SEs yet except feeling a bit tired this evening (no more steroid high).
Fairy I used a cold cap and it was by far the worst thing about chemo expedition. Very painful on forehead and uncomfortable with the rubber strap under the chin. It becomes more bearable after a while but it also adds 2 1/2 hours to the session. I wanted to try to keep my hair until mid December then do the switch to my wig over Christmas. I’m not sure whether I’ll use the cc again.
Linda I do have some inkling of what you are going through. Your Dx sounds quite similar to mine. I had a 2.6 lobular (well, some dispute about size being lob) and although lymph node palpable the original FNA came back negative. However from then on things went down hill. Had to have an MRI as it was ILC and that showed clusters of cells round the tumour which meant I had to have Mx and 2nd FNA showed node positive. It’s really easy to focus on the negative news - I have no vascular involvement, clear margins after Mx, ER+, but all I could hear was 8 positive lymph nodes. It may help to take it one step at a time and concentrate on what each piece of news means in terms of your treatment plan. There is so much that can be done.
Hi all,
Shouldn’t really be on this thread as won’t be starting chemo til Dec as I had mx first but as some of us were diagnosed about same time I feel at home here. Going to get results of my mx and node clearance tomorrow so fingers crossed it won’t be all bad. Am also hoping to hear more about wen I might get further scans as I have node involvement but no scans as yet, feel a bit left out as everyone else at least,seems to have dates for this hurdle.
Daysie - hope ur feeling a bit calmer now, it’s maddening wen so called health professionals don’t bother thinking about the impact of wat they say.
Linda - I have just had mx with node clearance, the op is really not that bad, and node involvement doesn’t mean it has definitely spread, just ur nodes r busy protecting u
Hope everyone has a good night
Herbi x
For those wanting risk reducing surgery there is only a low chance of BC in the other boob unless you have a gene mutation it’s about 5% chance in both boobs without a gene but -about 50% if you do have a gene… If you were under 40 at diagnosis you can request a referral to genetics or if somebody else in the family was affected with BC or OC.
I had vein damage from epirubicin after my first Chemo two years ago veins have never recovered and getting a Hickman line in on 5th Dec cos my veins are so rubbish… It did feel a bit like cording but wasn’t the same… Brufen gel helped the pain a bit.
First time round I shaved my head when it started to fall out cos it was really sore… But was still really sore after it was shaved too…like being stabbed all over… This time I’m letting it fall out itself… It’s annoying cos its getting every where and was still sore and prickly but because I was expecting it I didn’t find itvas bad this time… It’s now very fine like baby hair but I look like a mixture between beetle juice, scary Mary and a mad professor.
Linda I have two chest nodes positive and like you I was quite worried about spread but all my scans showed it was confined to the nodes and no spread was seen… Keeping my fingers crossed for you too.
We’re not exclusive so you’re very welcome to join us Hope all goes well tomorrow and they don’t send you back to the waiting room for too long. I didn’t have any scans after mx and pre chemo so don’t feel too left out.
Filosofie, don’t feel a fraud, celebrate do be careful though I was fine after No.1 then when I least expected it I hit my brick wall at 100mph so take it easy and be kind to yourself
Fairy, good luck for Monday may all your SEs be itsy bitsy teeny weeny ones
Audrey, I’ve been continuing the exercises just to make sure it doesn’t stiffen up. They did warn me Lymphodema(sp) could strike at any time so I’m trying to keep active and keep the muscles working (don’t know if it will help but worth a try) and I’m trying not to become a couch potato. I even went on the running machine today, okay so I only did 5 mins but every little helps and I did think it better to take it slowly and ease myself into it
I haven’t taken any steroids since Sunday pm so why has the sleep fairy abandoned me!! I could hardly keep my eyes open earlier and now I’m wide awake Oh well a couple of hours on the FT book should keep me out of mischief. Tracey, I’ll remember that, I do have NZ connections but not much detail so far, it’s one of the reasons we’d planned our holiday to NZ, research!
t.t.f.n
L4W
Just in case anyone doesn’t know **Shelly** is starting her chemo today so good luck and see you on the other side of No.1
and shelle, finally, you’re up. good luck today. i’ll be thinking of you.
this a quick one, like you lulu my hair is falling out in hand fulls, and i’m going back to work today! i thought it would be done by now but i can’t quite get myself to shave it off. am going to hold on for a while. quite nervous about work, i want to feel normal but i imagine there will be a lot of attention, everyone has been making a fuss. so it wont be normal. and how useful will i be?
Good luck and best wishes to those of you having chemo today. Hope your se’s will be minimal.
L4W - Yes I must try and keep up the excercises but I felt too ill to do them last week. I have started doing the warm up excercises again just to get everything going and I try and stretch my arm when it needs it. I have also been massaging my arm to try and ward off lympnodema. I’m afraid I did become a couch potato last week - chemo just seems to wipe me out for a week. I have a wifit so I think I will start using that again there must be games and excercises on there can help me try and keep fit.
Good luck at going back to work this morning. Don’t worry about it just do what you can. I know what you mean about fuss but everyone will just beconcrned about you and I am sure they will bevery supportive.
Fairy - i didn’t find the cold cap too bad really, it was a shock when it was 1st put on, i had real brain freeze, but the nurse tucked some wadding into the front to stop it touching my forehead. it didn’t add any extra time on for me, because i only needed it on for the Tax.
they gave me carboplatin 1st, which took an hour, so 30 mins into that they put hat on me, then gave me Tax, (took an hour too i think) then gave me herceptin, at the end of the herceptin the hat came off, so there was no waiting at the end, it seemed to work quite well
the strap was a little uncomfortable, but i just kept moving it from under my chin to on my chin, then back again. i don’t think i had icicles on my head after, if you are going to try it, i’d take a hat with you for when you leave the hospital as your head will be cold after (i didn’t last time, and it was freezing when i went outside)
Judes - good luck going back to work today
i have been humming and haaing as to whether i should go back to work, i’m going to see how i get on after chemo no 2, part of me just wants to stay away until treatment is over, i work 30 mins, so its an hour travelling to and from, to go in for a few hours, i’m not sure whether its worth the added pressure. i already feel i should go in because i have discussed it with them. i think it would be different if i enjoyed my job, but i don’t particularlly (maybe career change after all this)
if theres anyone on a manuka honey hunt, Tesco have it for £3.99, it a different consistancy to the Aldi one, it looks bitty, almost like theres honeycomb in it
oh and something i got from Tesco today was some yoghurt drinks, same size as actimel, but these are Tesco own make and are called “healthy immunity”, similar price to actimel too. i thought it was worth trying them
No chemo for me today, Still have a funny tum and feel fluey, quite ill in fact. I cant believe this! I have been so well up to now:(
Unit wants me to phone in the morning as it could be a 48hr bug. I think it will be next week now. I so badly want chemo but not if there are SEs on top of what I have now. Boy is my positivity being challenged, I have always ever tried to help others and Im getting rather bored with all this now and I am finally feeling very angry and asking Why me? (my mantra before was why not me) I have accepted the diagnosis had surgery now lets get on with things and get my life back!!!
Im sorry for this megga rant but I feel like I cant get much lower at this point, the only way can be up! Shellex
WHERE is my comment? Has it been axed because I ‘swore’? Gosh, what on earth possessed me? I put a lot of effort into that piece and now I can’t find it…!
Yes! I must have been AXED because I used the F word a few times, and the S word, and the B word. That is so BLOODY annoying because I now feel I have wasted precious time and there was good information in that piece too. We should be allowed to F’in’ swear occasionally, surely?!
OK secret police, if you have my piece that I worked on for an age this morning, that also included some good top tips and other heartfelt musings, just cut out the swear words and post it… PLEASE, pretty please and thank you.
Shelle sorry you have a bug and chemos been delayed again but it’s just not worth it if your feeling poorly… Fingers crossed it’s just a 2 day thing and your back on the mend again soon.
Judes good luck today… I think all you ladies working are very admirable I can’t even walk the length if myself without feeling like I’m gonna pass out… What kinda work do you all do? And how do you get round the being signed off thing? My gp signed me off till feb so can’t go back unless I get a fit for work note before then but she thinks I’ll be off for longer… Think I go to 1/2 pay on 1st march but should have annual leave to use so was planning to take all this years allowance and go back to work about April or may… Last time I had 11 months off sick and then 5 weeks of annual leave but was off from the day I was recalled and rads were delayed… It was a two hour commute each way and that’s what out me off mostly but now it’s only 20mins commute so that won’t be a problem.
Pleasant1 I hope your edited post can be found but sometimes if you post at the same time as somebody else you have to back page and submit again… Its annoying cos it doesn’t say somebody has made a new post since you started typing like it does on most other forums… But if the submission box appears again after you press submit this is what has happened.
Just a quick note about working, I never got my gp to sign me off, I was lucky that my work just told me to work when I felt I could and when I can’t don’t! I am lucky that I can and do work from home and keep in touch with work over the internet, but I’m a software consultant so it doesn’t really matter where I work.
I was a bit down this morning as it’s my 45th Birthday and I’m at home on my own… then my Mum came over and took me out to tea and cakes, I’ve never done that on my birthday before! Normally I just work! I’m so sad… I went out wearing my wig today for the first time, I don’t think it fits right yet when I got the wig lady to check it out she said it was fine… it doesn’t feel right but when I look in the mirror it’s ok so I guess she’s right, I’m sure she knows what she’s doing as it’s her job! It rather feels like it’s going to ping off, but it hasn’t done so yet!
I hope everyone’s se’s are small and everyone’s having a great day.
Shelle, I can’t believe it don’t worry you will get out of the waiting room soon. You rant as much as you like just hope it makes you feel better (I’d be screaming the house down) and takes your mind off the delay. Here’s hoping it’s a 24hr bug and you’re on the mend soon.
And especially for you (cos I started singing it as soon as I read your post:-))
weme - “happy birthday to yooooouuu!!!” luckily you can’t hear my singing i don’t think your wig should feel like that, have you tried adjusting it? i’ve not really worn mine yet, but it felt snug and secure when i tried it on.
Lulu - you GP can sign you back into work on amended duties or hours, but like you said, your job in a hospital is prob not the best environment for you at the mo. i’ve just been speaking to my friend about work etc, and i really think i should not go back at this time, i will just be adding more stress onto myself. My full pay runs out end March which is when my radiotherapy should be finishing. there are days when i feel a bit of a fraud, but then others when i’m so relieved to be having to go in
pleasant1 - next time you want to swear, change a few of the letters for **** we’ll know what you mean
Shelle - really hope you feel better soon, i know you want to get your chemo started, my OH was feeling like that at weekend, so he stayed away from me sat, but sunday he ws feeling lots better, so fingers crossed
L4W - ohh, i’d better check tomorrow, i just thought i’d be doing myself good drinking them. i’ll go and check out the songs when i’ve posted this
Hi All,
Been reading posts, so many of them, seems we all have similar worries it is such a devil this Cancer,
Throat still very sore, was prescribed anti-biotics just in case drove to Doc’s last night to pick it up feeling like hell, Doc had forgotten to leave the script…Grrrrh
Does" Lidles" have the" Manuka" Honey does anyone know? No Aldi near me.
Hair falling out on day 14, very depressing…think will have a No2 head shave this weekend, then scarf and Hat head, Do Not like the wig I got from the hospital Yuk! Wonder if I can return it ? never worn and probably never will be, feeling fed up, Sorry its the hair loss thing on top of awful week with throat, next chemo next week, just gets better and better…One step nearer to finishing I suppose. x
Hope all goes well tomorrow and they don’t send you back to the waiting room for too long. I didn’t have any scans after mx and pre chemo so don’t feel too left out.
Oh well a couple of hours on the FT book should keep me out of mischief. Tracey, I’ll remember that, I do have NZ connections but not much detail so far, it’s one of the reasons we’d planned our holiday to NZ, research!