Yes, it's shocking isn't it, how many lives are being taken by this frickin awful disease. And very young ones too.
Hope you ok - have you seen anyone about the rashes on your skin? I thought they were a SE of your chemo as you really suffered with your skin big time on that.
BIG hugs xxxxx
Hope we are all well. I too am quite upset about Tina. She has been on a few threads ive been on, but i had a rash in m cleveage area fornthe last week and was obviously worried about skin mets, did a search and read alot about skins mets via tinas threads as she had skin mets. So to my horror when i saw the post that she had died, i was stunned, completely stunned and most upset. So very young. Its totally messed up. In fact, i feelthe has been quite a few deaths in recent months, i hate seeing the end of life thread come up but it is a reality check.
God i pray they find a cure for this bastard disease soon.
(((( hugs)))) to you all xxx
I was so very sad to read about Gingerbud. This bloody disease is so cruel, and she was so young, leaving a small child behind. ((((BIG HUGS)))) xxxxxxx I didn't know her, as I'm too scared to read the secondaries threads, but it's so awful when you hear news like that.
Thank goodness you insisted they look at the lumpy bit of your scar and it turned out to be an abscess! Doesn't exactly instill a lot of confidence in you, does it, when they think it's one thing, but you know it's something more! But yes, now you're well rid!
And well done to your son on his offer at uni too!
Gill, Amysmum, hmmm, yes, what a drag to keep having to get a repeat prescription for Tamoxifen every month. I just presumed you'd be given a few months worth at a time.
Gill, glad that work seems to working out well for you 🙂 coz I know you were a little apprehensive about returning. And I hope your daughter has a lovely 7th birthday painting pottery! x
Gail, in case I'm in rotten SE land next Monday - I'll be thinking about you on Monday x
Hope everyone who's having rads is doing ok. Can't wait or my blood transfusion next week, I'm sooo tired, and the SEs are starting to kick in well and truly, achy bones, etc.
Love to All xxx
Just stopping by to say hi.... Not been on much.... Don't really know what I have been doing but just not been hanging out here so much..... The lumpy bi on my scar was getting bigger so as t checked on Wednesday and they scanned it and decided it wasn't a cyst as first thought, and that it could hav been a suture irritating it from surgery but the scan couldn't confirm if there was a stitch there but surgeon thought best to leave it but I said I'd rather he removed it so he did a wee impromptu procedure on it. Some local, a scalpel and forceps later and I had an abcess removed and was glued and steristipped with a massive bruise but no lumpy bit. The prof seemed quite surprised it was an abcess. But glad to be rid.
My son had an aptitude test for an engineering apprenticeship on Monday and he's had a offer from uni in Glasgow to do electronic engineering.... So I'm very proud of him.
Anyway glad your finished kym and bet you are even more so.... Hope you don't suffer to much.
Gail good luck with your scan on Monday.
Big loves to everybody still reeling from the news about gingerbud.
Love lulu xxxx
the pharmacy have given me a form and they will collect prescription, but i have to take request to GP (i think, i'll have to check that) I'll let you know how I get on when i ask for 2 packs
Glad rads are ok for you, skin does continue to get redder even after rads have finished, my zapped area looks a bit tanned now! still a little bit itchy sometimes too
Hi Gill, I get Tamoxifen 1 pack at a time too. Not sure whether it is a rule or not. But the pharmacist at the local Asda will handle repeat prescriptions. I just have to give them a bell, they sort it with the dr's surgery and then 3 or more days later, I collect them when I am shopping. It won't be great having to remember every month, but it does reduce the hassle.
I have had the first 7 rads and seem to be coping OK. If I could just sleep better at night (partly hot flushes, partly no idea what) I would be a happy-ish bunny. I am starting to get a bit tender where they zap me, especially where I have a small mole, but I keep slapping on the aqueous cream.
I'm back on a bit quicker than i thought i'd be, I've picked up my prescription for my next lot of tamoxifen from my GP's and our health authority will only allow GP's to prescribe the one pack at a time, has anyone else had this? what a pain to have to request a repeat prescription every month for the next 5 years!
Receptionist has advised to put a note on asking for 2 pack next time and see if they acan do it.
afternoon all, hope we're all ok?
Kym - hope this last chemo is kinder to you, but at least you can keep in your mind thats it, all done, yay
I really can't remember who has posted what but to those thinking about herceptin only, i'll agree with Liz that its nothing compared to chemo, i hardly notice it, apart from the trouble with my veins last week, i had to switch hands half way through as my hand started to swell, so all future herceptins will be in "bad" arm, so long as no sign of lymphodemia Nurses are happy to use it.
I've been for heart scan today, that was ok, i'll probably get the results on next attendance. and i had an appoint with genetics dept too, they have said my family history, myself and a younger cousin affected, leaves rest of immediate family with a moderate chance of getting BC too, no further tests from them but my sisters should all be able to be screened earlier that aged 50 if they are concerned and want to be, one of them had already been told she couldn't have mammogram until she reached screening age.
i had another good day in work on monday worked 9.30 - 13.30 and the morning flew by, off today and back in same hours for the rest of the week, roll on the weekend, and a birthday party for my little one who is 7 next week
catch up again soon xx
Weme - Hope your onc has good news for you. When's the appt?
Teresa - Also hope onc appt goes well. I picked up a couple of the Primark vests. Wearing first one today and seems fairly good so expect I'll get a few more of them.
Paula - My nails still have the nicotine look. I'm now obsessively checking them for signs of turning white in case they go. I have visions of your wig collection taking over the house. Are they the same colour or different ones? Hope the wig lady was joking. I read somewhere that your hair is supposed to grow at the same rate as it did before chemo, but I expect some hairs take longer to start coming in again than others.
Liz - Good to hear the Herceptin isn't too bad. Does it make you tired too or is that just residual effects from chemo?
Kym - Well done on making it through last chemo and with most of hair intact too. Hope you don't suffer too much this time, but it's good to know it's the last SEs at least. Must have been great to have a proper bath. My MRI for the liver is next Monday so trying not to think about it too much this week.
Just a quick comment as I am meant to be working, Teresa, yes, it was Friday I have a rads appointment at 11:10 and then onc at 12 so will be around for a bit that day - do you have to go round to the worcester suite as well? How is Debbie doing?
Kym, well done for finishing chemo, just one more lot of se's to go through and a nice relaxing bath.
Got to go.
Congratulations! On the last chemo and the bath!
I don't have any real SE with Herceptin - just feel a bit cold on the day and my nose runs constantly! I can live with that compared to the chemo.
My blood count was over 13 at the end of March, which is OK, but I still feel really tired. So good luck to you with the transfusions.
Take care, Liz, x
Thanks Christine, LAST chemo!! Yes, just had a bath with BOTH arms in the water, yippee! Looking forward to transfusion, just to get some energy back! Interesting what you say as regards them dropping again in just 2 weeks tho. I was told that I'll be having my mx 4-6 weeks after my last chemo today. How are your energy levels now? xx
Just pop in to say CONGRATULATIONS to Kym. It is such a relieve to get that PICC line out, isn't it? I had two units of blood after last chemo and it did me sooo good. Funny enough, two weeks after that I had the OP and my HB was exactly like before the blood transfusion. I wonder how low it would have been if I wouldn't have got the transufusion! Big hugs girl
Teresa, hope Debbie is feeling better when you see her. Please send her our love.
What's rads like? Do you have to stay in a funny, awkward position for a great length of time? What do they give you to wear to cover your modesty? Please don't say a paper towel, lol! Gill got a very fetching purple gown!
And yes, it IS good to know we're not alone in the bedroom dept, isn't it, lol!
And thanks to both you and Paula as re what you both wore when you came out of hospital. I didnt know whether or not to go out and buy a button thru shirt, but I NEVER wear shirts. Think I'll do what Paula did and put a tshirt and cardi on, and one of the Primark vests I got that you told us all about - and hope I can manage to get it all over my head with a numb arm, etc! Paula, I'm still numb under my arm from my SLNB.
Paula, so glad you're starting to feel better! And don't worry about your hair. Everyone's grows at different rates - and I hope your wig lady was joking!
I'm intrigued to know - when ladies say they lose nails (yuck!), I always envisage just horribly bare, very tender and sore skin underneath, cringe! But when you say there is a new nail - how far grown is it? And is it hard or horribly soft?
I noticed only over the weekend that my bald patch on top is almost gone. The hair is about 2 cm long, but looks like bum fluff. No substance. In fact, my hair looks pretty sh*te, but it HAS been chemoed. I'll wait and see how much I lose over the next few weeks and then go and get it cut into something half decent. Needs colouring too. New hair is brown, like the rest of it, but it all needs proper perking up. Not sure how soon I'm allowed to do that. Gill, how long after your last chemo did you colour yours?
And yes, came back about an hour ago from my LAST chemo, yippee!!! Also had Picc line taken out, so will have a lovely bath later where I can get my left arm WET, yippee!!! Been so incredibly tired these last few weeks, just thought it was the accumulation of chemo. But my blood counts are very low, so next week I'm having a blood transfusion, and apparently I'll leave the hospital all bouncy and feel like a new woman. Yippee!!!
Liz, hope today went well. What SEs do you get with that?
Gail when are you going for your scan?
Love to everybody xxx
Good luck for your last chemo today, Kym! Yay!
Oh Paula! I do hope the wig lady was only joking, or you are having a laugh! 2 new wigs so you can now ring the changes and look however you like! My wig never really suited me and so I always wore beanies, but everyone now says my hair just looks like a normal style, but very short! Methinks too kind. When I took ds to get his haircut on Friday, they just trimmed the neck area for me, as it was kind of growing down both sides of my neck like 2 little pony tails! Paula I think everyone's hair is different. Mine has always been fast-growing and quite coarse and thick, so it's growing quite fast. They say after 6 months you shoul dhave about 2 inches.
Lisa I wore one of those vests with a hidden support (£2.50 in Primark) when I came home.
Glad we had the chat about bedroom activity, sometimes you just wonder if it's only you! Lisa the doll may be a viable alternative for a while!
Weme was it Friday you said you'd be in the same time as me? I can't remember can I still use the chemo brain excuse??!
I'm in for rads number 6 today, am now very bored with it, had enough thank you. That's at 11:50 then onc at 1:30. I had to ask for an appointment to see him as I have not set eyes on him since January!! My friend lives round the corner from hospital so I'm going for lunch with her, then she's running me home. Also popping in to see Debbie from the December forum as she had her last chemo 2 weeks ago and is stuck in overnight with low neuts. I was surprised the nurse said I could pop in but they are OK about it, apparently!
Gail, Gill, Sue, and anyone else I've forgotten hope you all well. No time as have to rush!
Good morning everyone
Kym a big Yeayyy for your last day of chemo! it really is good to start feeling 'normal' again once it's finished.
It's 3 weeks today since my Mx and the area is feeling much better, it feels numb, but I was told that if I keep massaging the area with some non perfumed cream it will help and the scar dissipate. I didn't wear a bra when I left hospital, just a t-shirt and cardigan. The BCN gave me sponge boob to take home and the first week I wore tops that were gathered underneath my boobs and instead of wearing a bra I put the sponge boob above the gathered area, it stayed in place ok. I wear my genie bras now as they are more comfortable than they were a couple of weeks ago, the sponge boob stays in place ok and the appearance looks fine under clothes.
I lost my thumbnail yesterday :o( whilst cooking the sunday dinner thankfully it didn't fall in lol, there was a new nail underneath, so that's 3 i've lost now and think all the others will be going this week. The old nails went a nicotine colour and then whiteish and feel like they are stuck on to the new nails under them. The ends of my fingers are also very slightly tingly, like they have been dipped in hot water, also the soles of my feet feel the same. My toenails are ok, haven't lost any of those.
My hair is still very thin, it's hard to tell if it's growing, but I think it is a little bit, I thought there would have been more of it by now, does anybody know how long it takes for hair to return to normal? I saw the wig lady on Friday and got 2 more wigs, as mine has seen the best of its days. I asked her if my hair was coming back and she said not sure as she didn't have magnifying glass... :o(
Hope everyone has a good week.
Liz, my chemo is at 11am tomorrow. I've remembered to take my steroids today - forgot last time and had to go back the day after, the dozy mare I am.
Good luck with your herceptin tomorrow x
My BCN told me that I'll only be in for one night when I have my mx, so will come home with drains in a little dolly bag 😞 oh well, looking on the bright side, I won't have to endure the hospital food for too long.
Interestingly, she also told me that my BC is only very mildly oestrogen positive and that the Onc has yet to decide if the side effects of Tamoxifen is worth me taking it or not. Which is odd, as Onc already told me that I'll be on it for 5 years. I'm herceptin negative. So a bit worrying . . . .
Gail, when are you going for your liver scan? I really hope it's nothing to worry about xxx
Kym: good luck tomorrow for final chemo - what a long haul for you.
Lisa: I wore a bra when I came out of hospital after mx. I was in 3 nights as I had a drain in and they won't let you out with it here. I was told to wear my bra for a few hours every day and build up until I could wear it all day but I forgot and wore it all day from the start. Didn't have any problems as the area is numb.
Gill: congratulations on going back to work. The very thought of that exhausts me even more than usual.
Paula: Great pathology results.
Gail: Hope the liver scan shows something minor.
Someone asked about losing toenails - I have lost about 5 or 6 but new nail underneath like fingernails - lost 7 of them and expect the others will follow. Just as long as they grow as fast as they did after chemo finished.
Hair is growing very slowly; have started taking pictures to record its progress. It was 5 months yesterday that it was shaved off and I intend to take a picture on 21st of every month to see how much it is growing - not obsessed or anything!!! LOL.
Hope you are all doing well and building up your stamina.
I have Herceptin tomorrow (changed to Mondays for the first time) and it was great to get a 5-minute telephone consultation on Friday instead of a trek to hospital. What time is your chemo Kym - I'm in at 9.30. and hopefully out in an hour.
Take care all, love, Liz, xx
Lol, yep, it's no wonder none of us are up for it in the bedroom dept is it! And it IS very reassuring to know we're not on our own isn't it!
Lisa, is that dolly on your OHs birthday prezzie or Xmas list, lol?
Thanks for all best wishes for tomorrow - it really feels like its been a long haul. We went to Liverpool to watch some of the Sea Odyssey - what we saw was really good. But shattered now, having a lie down before making tea. This constant fatigue after any exertion of any sort is pants isn't it' especially when I can normally quite happily do 10 hour shopping expeditions, lol.
Kym.....maybe he decade is a bit soon! Lol
Gill - yep, i took that picture just last week
Teresa - that sounds like my list of reasons why nooky is off the list of favourite activities. I may have to buy him a rubber dolly! Looooool
Weme - well he did say its highly unlikely i would need more chemo so heres praying.
What did everyone who had an MX wear home from the hospital after the Op? Did anyone wear a bra?
Phew! Am so relieved it isn't just us having no action in the bedroom department. Strange that with one boob extreme fatigue, baldness,menopause and piles I just haven't felt like it!
Knackered from rads and mild lymphoedema otherwise OK. Will write more next week.
Thanks Gail, not looking forward to it - but on the other hand, I am, coz it means its almost the end of nasty phase one! xx
Gail, I am finding that I can concentrate more now than when I was getting chemo, but I tire very easily - I had to go and visit a customer in Cardiff yesterday, it was a whole day visit and by the time I'd got home I was shattered, and my wound area was quite irritated with wearing a bra all day as well as I am quite large so don't go out without a bra on with softie in it. I am most likely trying to do too much too soon but it is beginning to get a bit busier at work so needs must, I'm hoping that it isn't going to cause me problems down the line but the tireness does seem to be gradually getting worse - only 2 more weeks of rads, 6 sessions left.
Lisa, that is pants if you have to have more chemo, I'm not sure what I would do if they said I had to but I guess you do what you need to.
I've got most of my arm movement back, I try to do the exercises but only managed about once a day at most - does anyone know how long we need to keep the exercises going? is it forever?
As for creams, I am using aloe vera gel which I got form h&b, I asked them to check it out at my unit and they said it would be fine, I find that it helps if I put some on when I get home from rads session but I normally use it morning and evening. I found some aloe vera deodorant which they also said would be ok to use but to stop if I find it causes any irritation, so far it's been fine.
Kym, good luck for your last chemo, well done for getting this far and I hope you don't suffer too much.
My Onc has asked to see me next week but I have no idea why, hopefully he is just going to tell me its going well.
Weme - Are you finding it's easier to work through rads than chemo? I'm planning to stop work until rads are finished as didn't want to be doing half days and rushing to get back to the hospital every day and not sure when I'd start to feel too tired, so thought it would be better just to stop altogether. Expect I'll probably log onto the laptop now and then to keep in touch with things though.
Lisa - You're new pic looks great. Is it a recent photo? Can't believe you could get more chemo after Mx. Hope you don't have to.
Gill - I'm glad you're doing so well at work. I think it does help to take your mind of things and feel there is life after BC. Funny how everyone's getting different advice on the 'tummy tuck' and c-sections. I don't have children but onc said I wouldn't have enough fat there, but I suppose there's time to go on a chip and pie diet.
Paula - That's great news from your Mx. No wonder you're on such a high.
Christine - Hope you're getting a bit more movement in the arm. I'm dreading that bit most of all after Mx as I had a frozen shoulder a few years back on the bad side and it took so long to get full movement again.
AmysMum- There does seem to be a lot of different advice on creams for rads. I forgot to make sure I got my list of approved products at my planning session, but I know Lulu said our unit doesn't like us to use any creams at all. Must try to remember to ask at my verification check on Tuesday.
Kym - Good luck for last chemo on Monday. Hope the SEs aren't as bad this time too.
Sue, I haven't started rads yet (last chemo, no 8, on Monday), then mx, then rads. But it's interesting what you say as re using cream. There really doesn't seem to be a definitive procedure; some are told what to use, others are advised to use something else entirely, others ask you not to use anything at all. VERY confusing! Some say aloe vera gel is great (and you'd use that for burns normally).
Gill, it is intersting to hear you report that your arm movement isn't back to normal (and getting worse again with Rads). I had my MX at the start of October with immediate recon and have intermittent problems with movement (getting stiffer now after a week of rads) and I put it down to the recon. Maybe I was mistaken and I should start bonding with my lump of silicone a bit more.
DH hasn't seen any genuine bedroom activity since October either. He has suggested it from time to time, but really I haven't had the spare energy or inclination. It must make my moodiness from tamoxifen all the more tricky for him to cope with.
I have survived my first week of rads. One of the machines seems far quicker to set up than the other - or maybe it is just luck.
I am a little confused by the advice on aqueous cream. Before my first appt the (student) nurse said not to use anything untill I get a reaction but then 3 days later the radiographer said it is great for removing the pen marks. They then said that I should be moisturising with it. ho hum. Better late than never I guess.
I am in denial about my nails. I keep them covered with varnish. I triedd 24 hours without and the pleasant nicotine colour changed to a scary white - I grabbed the nail varnish instantly. I will look again over this weekend as they are starting to chip.
Hope everyone is coping well.
I put my hand up and respect any of us who have had any bedroom action since last years diagnosis. My poor hubby......but then.....in sickness and in health - and we sure are being tested in our marriage vows!
I'll make up for it before the turn of the next decade looool
Hi Paula - great to hear from you, we don't hear anything for ages then theres no shutting you up 😉 lol Really glad that you had good news following your op, i'd defo go out with your work collegues, i feel so positive about things now that i'm back in work, i feel normal! whatever that is
Audrey - this week i've worked 3 days only 3 hours a day, next week I'm doing 4 days @ 4 hours (my normal working week is 4 full days) i think i'm lucky that i'm able to do my phased return over 13 weeks, i'm hoping to build up my hours each week, and i have to say work has been great, i've been broken back in very gently, next week i really need to get stuck in
Hi Christine - i had my mx and all nodes removed end of sept, your arm movement will improve, slowly but surely. i used gauge my movement by how easily i could wash my hair in shower, to begin with i could only used other hand, but i'm fine now to use both, although i still don't have 100% movement, rads has definately hindered it though
Kym - i think the surgeon who spoke at that session i attended said that they take everything into account if considering the tummy tuck recon (not sure if thats what i should call it) and the fact that you've had any other abdominal sugery doesn't necessarily mean you can't have it, but one method was a vertical incision 😞 i didn't like that idea, i think a lot depends on your hosp, and what procedures they are specialised in, if i wanted that i think he said i'd have to go to liverpool and it is a very big op, at least 7 hours
And Kym, last one on Monday, yay!!!! see it has come around, I know it felt like it would never come, but scary really, time is flying by, i'll be thinking of you for defo
hope that everyone else is ok, i'm heading off to my bed now (yes all alone, no gymnastics for me either, i like my bed to myself!! lol)
Night All xx
Paula, that is brilliant news - no wonder you're on a high!!! Yes, I WILL give you a ring before I have mine, if you don't mind 🙂
Re bedroom gymnastics, poor OH has'nt seen any action since last September I'm afraid.
But all these horror stories of nails dropping off is flippin orrible! I've got plasters on 3 of mine at the moment because they've split halfway down the nail bed and I'm frightened of catching them - this is bad enough. The thought of nails coming off altogether just fills me with dread.
Audrey, its rotten feeling so fatigued isn't it. I hope it starts to wear off for you. Apparently, it takes about 12 months before we start to get some bit like our old selves again.
I'm having my LAST chemo, no. 8 on Monday, and dreading all the SEs when I'm just completely wiped out. but it'll be the last time, yeay!
Enjoy your weekend away 🙂
Interesting what you say as re recon and C-sections, Gill. My surgeon more or less told me it was out of the question when we briefly talked about my mx before chemo started. I'm seeing him on the 8th May to discuss the mx, so I'll see what he says then.
Just lost my post so trying again.
Sorry to hear that your toenails are in a bit of a mess. It is my right thumb nail that is coming off at the moment. It is very tender to touch.
Sorry to hear you're still fatigued, it seems to come in waves, I'm on a bit of a high at the moment so not as tired, maybe some if it is being a little depressed, when I had chemo I lost the will to get out of bed, may not have all been chemo!
My finger nails have developed ridges that look like waves, they have split near the cutical and then become loose and eventually drop off, thankfully half a new nail is under it.
My toenails are a mess as well, they are cream coloured and feel like dead nail on top with new nail underneath. I went to the chiropodist as my GP's yesterday and she cut my toe nails as far down as she could, some were ok, but my big toes looked ridiculous after she cut them, hardly anything left, so she put 2 huge bandages on them with some iodene lol, have removed them today, they aren't as bad as the finger nails. I've also got a slight tingling sensation at the ends of my fingers, almost like they have been dipped in water that's too hot, very strange.
Just a quick post to let you know that I have had my appointments with my GP and Occ Health. I don't know what I worried about, both my GP and the Occ Health nurse were lovely and listened to everything I had to say. Both of them have said that I am not fit for work yet. See my GP again at the end of next month and nurse probably at the end of June. Also my skin is getting better everyday.
Paula - Lovely to hear from you again. That is really good news from your consultant. Take care. I am losing my fingernails as well,5 gone now, another almost gone and I know I'll lose the others. Worried now that I might lose toenails as well, one of my toenails is sore and another is going white part way down the nail. Don't know if anyone else has had problems with their toenails.
Gill - Glad work is going ok for you. How many hours do you do a day. When I do go back to work I will be on a phased return over 4 weeks.
Going to stay with friends over the weekend so really looking forward to that.
Hope everyone else is doing ok and that everyone has a good week end. Sorry can't reply to all individually , just too tired. I do wish this exhaustion/fatigue would go away.
Love to all
Hope you're doing well after your Mx, each day gets better doesn't it. I could lift my arm to put my t-shirt on the same day as my operation, but I can't lift it straight yet, but at least I can get dressed ok and do the ironing :o( LoL
I had my nodes removed last October and didn't need any others removing. My ribs have felt sore and were bruised the first week, but much better now, I think the surgeon may have kneeled on me lol.
The operation area still aches, but not as much, getting better each day, think it's important to move around to avoid stiffening up.
Not sure what a seroma is, fluid build up? If it is then no, I don't have that.
Relieved it's over 🐵
Hope your rads go well, I'm not too worried, can't be any worse than chemo!
...me again, keep thinking of things to tell you all, LoL, on a bit of a high after results this morning.
Regarding things in the bedroom department, lol - I haven't had the courage to show my OH my scar yet, only a little portion of it. He has told me not to worry about it, and that if we have shimmineyhoo I can keep my bra on if I want - lol, typical man!! I really don't feel like bedroom gymnastics at the moment, and I doubt I will for many more weeks! :o(
I don't even like cuddling without my sponge boob in place...
Paula that's very good news. All worth it in the end!! I'm just a week behind you with MX, got all my nodes out too. I think to remember your nodes weren't affected, did they leave your nodes in? Can you move your arm up again like pre OP? I find it quite difficult and wonder when I'm able to get my arm up again above my shoulder. I see my consultant next week Friday and have rads planning just one day after you. Did you have a seroma at all?
All the best,
Another PS: I've also got an appointed for the end of May at the Orthotics department, this is the place where I will be measured for a silicone prothesis (external boob). I have seen one, they look and feel like a real boob! I think they cost about £150 but we get them on the NHS.
Hope you are all doing well, so many postings to catch up on which I haven't managed to do yet!
I'm now 2 weeks and 3 days after my mastectomy and starting to get my life back to some kind of normality. The scar is healing very well and looks clean and tidy, although a bit lumpy. numb and tight although that feeling that should pass if I massage some E45 cream on it regularly, or any non perfumed cream.
I've started to wear the Genie bras with my sponge boob in the pocket, they were uncomfortable at first but starting to feel better as my scar heals, they look fine under clothes and hard to feel the sponge boob from the real boob that used to be there, I've even got a small cleavage! LoL.
All my dressings and steri-strips have been removed and a little boob has started to appear, it's probably just fat and skin, it looks weird without a boob, and without sponge boob I feel very uneven, I don't bother when I'm on my own, or wear a top to disguise missing boob.
I went to see my consultant surgeon this morning for the first follow-up appointment, I was worried about what he was going to say, especially the findings from the diseased tissue. He walked into the room with a big smile and said "it's all good news" the histology pathology reported that the chemo had worked very well and shrunk the tumour down to 25mm, it's all gone and he doesn't need to see me again until my annual check up in 2013 and then another in 2014 and another in 2015... I walked out on cloud nine, the BCN said he said I am a strong woman, coping very well, and he is pleased that he has done a good job on me!! LoL
I go for my first radiation planning meeting on 3 May and then within 2 weeks after that start 3 weeks of radio therapy, then that's it - no tablets or anything else.
Hope to have a holiday in June or early July then phase back to the wonderful world of work. My new boss has invited me on a tenpin bowling night next week - Big LOL - said I couldn't swing my arm, but think I will go anyway, just to catch up with colleagues and my new boss, he sounded very friendly on the phone and said that I just need to ask if I need anything at all - some sick pay would be a good start!!! LoL.
Trudi - I'm going to the Big C for 11am in the morning to get a new wig LoL, if you're there for anything, or would like coffee, I could do either before or after. Sorry for the short notice!! I'm also planning on going to one of the KeepingAbreast meetings where the women show off their recon boobs and talk to us about procedures etc. Looking forward to that, although my OH is banned! - he can ask all he wants, but not allowed! LoL.
Kym - if you'd like a chat about Mx nearer the time to yours, just give me a ring and I'll give you lots of reassurance that it isn't as bad as you think it's going to be, honestly!
So that's a quick update from me, sorry not been around much lately, but now my energy is returning I've been catching up on life!
Just off to have a large slice of lemon mergingue pie mmmm yum, I've missed food! lol
TTFN - Paula x
PS: Hair starting to return a little each day, very itchy scalp especially under wig, which is a clue it's returning! yeayy :o( My finger nails are wrecked, have lost 2 nails and the others are all going to come off, they are yellow and cream in colour, but there are new nails underneath. My eyebrows and eyelashes have all gone, no sign of them returning yet, I wear eyebrow pencil and eyeliner, so doesn't notice much. Lady garden returned first...typical! LoL
Morning, in work for 2 days and now i've got day off 🙂 off for hwerceptin in a bit so thought i'd pop in here
Maybe Kym needs Lisa's hubby to rub the vicks on her feet? lol
Lisa - i really hope that you won't need further chemo after, we'll all have fingers and everything else crossed for you
on subject of recon, I've also had 2 x c-sections and when i went to the talk on recon i asked about the "tummy tuck" recon and the fact i'd had the c-sections, he said it was still possible, but I was actually put off this method due to the recovery time. I was advised it would be 12 months following mx before they'd consider recon. I have an appointment in May with consultant about recon, i'll ask the question again
Portmeirion is lovely Kym, last time i went was last summer (pre BC!!) and it was a beautiful day, it was fab, gorgeous beach, gardens, buildings, i've got some pics on FB, not so sure it would be as nice in the rain.
off i go now, hospital for 11
P.S. hope to God you DON'T have to have anymore chemo Lisa, not when you've already had 8!! What if you'd had your mx first? You wouldn't know if the bad cells were still there. I always thought it was the rads that mopped up any stray naughty cells?!
Teresa, has the BCN got back to you yet about the cording? That is pretty bad of them. I must admit, I've not had much contact with mine, altho I'm seeing her on Friday. Last time I saw her, I could tell she didn't even recognise me (and I've still got hair! Well, just about). She always told me she'd ring me every 2 to 3 weeks to see how I was going (and I should ring her if I needed to) - think she's rung me twice since I started chemo last November.
Is Jude's doing ok? Why doesn't she come on here anymore? 😞
And yes, not at all looking forward to mx, but like you say, has to be done. I will definately go for some sort of recon in the future, coz I couldn't bear to just only have one boob. I HATE hospitals and I'm scared of operations etc, but then, I guess no-one wakes up saying 'Yippeeee! Off to be chopped up today. Hmmmm, wonder if I'll wake up after', lol. As yet, I'm not sure of my options, but I know I can't have the same one that Lisa can't have either coz I've had 2 C-sections. Shame, coz that's where all my excess weight goes, on my stomache 😞
I don't have much of a bum, altho with my excess weight at mo, it's looking half decent. But as soon as I lose weight, that'll be the first place it goes from. I'm hoping to discuss this sort of thing when I see my BCN on Friday.
Gail, sounds like your achy ankles are leftovers from the tax. So really pleased that you're not getting any really bad side effects from Tamoxifen.
Gill, I'm jealous. Prague! I bet it's fab!! oh, I hope we can manage to get away somewhere this summer! And thanks for the tip on the Jorvic centre. Like you say, £30 IS a lot for 3 of you for not very long! All I remember of it is trundling around in wooden carts. Hmm, think that may be of the menu then, next time we go. It's been a long time since we've been, but I remember the Castle Museum in York was really good and worth the money. I'll keep the World Museum in mind for next time we're twiddling our thumbs and wondering what to do. Have you ever been to Portmeirion? If you have, is it any good? I've always quite fancied going there.
Hmm, the Vicks. Well, my socks were very UNfluffy! perhaps yours WERE fluffy Lisa? And I sleep under a goose down quilt, lol. I was waiting for the waft of Vick to come up from the soles of my feet and out of my nose. But no, not a sausage. Did your OH shove the whole pot onto your feet? I'm very disappointed and was very sulky about it all when I was wide awake and up coughing and spluttering at 4am this morning! I thought you had found the universal cure for nasty nighttime coughing! You sure you not winding us up, lol.
looool - the vicks experiment could be funny!! I use a duvet, maybe Kyms socks were too fluffy? loool.
I did an internet search about the vicks thing, quite a lot of info out there actually which surprised me. There are a few websites which said it was a hoax, but loads of people came on and said it worked for them loool . Im sticking with my story!
teresa - yes I think I do want a recon. They told me 6 months after rads finishes, so I reckon it will be 12 months from now, I've got a good year to lose weight, get fit and research the various options. I can't have the fat transfer from my abdo as I have had 3 C-sections and also an abdominoplasty, but I've got plenty of spare on my ass, back and hips! loool
Got pains in my naughty boob the last few days, I hope its the last of the TAX killing the last of the invader. My surgeon did tell me that he hopes to find no live cancer cells on pathology after the Mx. He said on the rare occasion they do find active cells they occasionally recommend 2 or 3 more doses of chemo - I PRAY TO GOD that doesn't happen to me. He did say it was the exception rather than the rule though.
Kym - i just remembered that someone had asked about the Jorvic centre, so looked back to find out who. I went there years ago too, not really sure whether a 12 yr old would enjoy it, tbh i was a little bit disappointed, it cost nearly £30 for the 3 of us and you couldn't spend a whole afternoon there so not really value for money, it just seemed a bit dated in the museum sense compared to The World museum in Liverpool which had so much interactive displays.
I didn't get copies of the consent for for chemo or op but I did get a copy of the consent for for the rads, they said take it away and if I had any questions about any of the side affect to ask them next time. I am sure that one of those sSE's was swelling in the arm, I will check when I get home.
Got another rad tomorrow so working from home then but back in the office on Friday, it's been good to see everyone in the office rather than just talking on the phone.
on the vick front, perhaps we should see what the difference is between LL and Kym, do you both use duvets or blankets? perhaps it's the vicks wafting up through the covers and one of you didn't have your feet tucked in! It's got to be all scientific like you know!
Lisa - Good to hear the Vicks on feet did the trick.
Kym - Sorry it didn't work so well for Kym. I'm not really having too much bother with Tamoxifen. A few hot flushes and slight aching in the ankles at night, but that could just be lingering SEs from Tax.
Trudi - Glad you're finished rads too now. Let use know how you get on with the Evening Primrose.
Teresa - Hope you've heard from you BCN by now. As you say it's not life threatening, but it does seem to make a difference if they get on top of it quickly. Also not looking forward to having to go to hospital every day for rads, but I know I'm lucky being able to get to the hospital within 1/2 hour compared to some who have to make a long journey so I shouldn't moan too much about it.
Weme - Hope the new ABs work better. Did you get copies of the paperwork? I've signed a few consent forms for chemo and rads, but was never given copies of anything.
Gill - Good to hear you're getting on well being back at work. It helps that you already know some of the people there. That'll be lovely having another holiday to look forward to as well.
Hi Ladies, well i've done 2 half days in work, i had a lovely welcome in work, especially considering it wasn't my usual office. I do know a couple of the people there quite well and most of the rest i've met a couple of times.
An it has made me feel that i'm getting my life back to normal, even though i've only done 3 hours each day, next week i'll do 4 hours a day, off tomorrow as in hosp for herceptin, then next week i've got my 2nd heart scan and an appointment with the genetics dept.
Lisa glad to hear the vicks on feet worked for you, sorry that it didn't for Kym though, no cough here so i can't test the theory
Trudi - glad to hear you had a good weekend away, it sounds idylic
Teresa - hope you BCN finally contacted you, its frustration when you are waiting to hear back from someone, i have to say my nurse was very good for getting back once you'd left a message
weme - i'd definately get some time away booked, its something to look forward to and also something totally away from BC and work!!
and on that note, i'm going away with my sisters in aug, to Prague, it started off 3 of them who were going, now its all 6 sisters going away together for the 1st time since we were kids, i'm a bit wary of leaving my little one, but its only for 3 nights and my parents have offered to have her, something else to look forward to 🙂