The rash is beginning to start clearing up, the heat has gone from the worst part now but it is still quite itchy and red but nowhere near as bad as it was yesterday. I'm not sure what has help clear it up, the new ab's (can't beleive they work so fast!) the new antihisimine (but it is still very itchy so that not working well either) or the fact that I spent most of yesterday evening with cool wet cloth on arm trying to cool it down. Anyway, today I'm very tired and had to go and have a lie down on my bed this afternoon, only the 2nd time I've done that since diagnosis.
I too am strugling with bras, although I've found one that's fairly comfortable I find it iritating under the arm so only wear it if I am going out or expecting visitors, I've just ordered another off the internet along with a camisole to see if maybe that would be a bit more comfortable to wear. I'm not sure whether I can wear anything after rads start next week and i didn't get any purple gown to wear either, also haven't been told about creams - maybe that is all to come with my first zapping next week, I had my planning last week.
I hope you're enjoying the weather.
Gill I take my tamox at nightand don't get any bad side effects from them you can take them when you like it makes no difference to the effectiveness... This will be year 5 for me.
My skin is red on my chest and my back and quite itchy I have been putting a sneaky wee covering of aqueous on and was given my 'official' tube of cream so I'm now allowed to do it.... Final zapping tomorrow woohoo!
Your lucky you get a gown we get a square of paper roll.
Lisa - i struggled with bras after my mx, i struggled with 1 tatty old thing for a while until i finally got some from M&S online, (my local store doesn't stock post surgery bras) I ordered and sent back more than i kept! but eventually found some i was happy with, in the evening I still change into a sports style bra from peacocks, very cheap and comfy, £6 for 2, doesn't give good boob much support, but these are stretchy enough to step into and pull up, rather than put on over head, immediately after surgery i went without for about a week I think, it just wasn't comfortable.
Lulu - my skin is a bit sore now, and quite red, but bearable, how is your skin now? did you sneakily use any cream? I had 15, and i was glad to throw my sexy purple gown into the laundry bin on way out on weds
Gail - thanks for that, i have PM'd you back
Weme - hopefully your rash will have cleared by tues, and apparantly the weather is set to change for the worst
Trudi - how are you getting on with Tam, i had my prescription today, what time of day are you taking them, i've been told morming but i know someone who takes them at night? i wonder if it really matters
I also had Herceptin, now that by itself really is a walk in the park compared to full chemo treatment, all done in less than an hour, great
Off to make tea now, hungry child harrassing me lol
Lulu - I'm so pleased your Mum's mammo was fine. Good luck for your final rads tomorrow and have a great break after it.
Weme - Hope the heat rash clears up soon and glad it wasn't anything more serious. Makes sense the skin would be more sensitive to these things after chemo.
Gill - Thanks for the comment on PMs. It reminded me I'd still to PM you about the link for your Race for Life form so I've finally done that.
Just back from my post-chemo mammogram and ultrasound. Mammo shows there's still a lot of fluid (which I knew anyway) but ultrasound more positive that the lumps are smaller. Sounds a bit mixed but am taking the good news over the bad. I had a different radiologist for the ultrasound this time who told me it took her a while to get through my notes as there was so much in them. CT scan tomorrow then back to the clinic on Tuesday.
Gill well done finishing rads.... How is your skin doing? How many did you have altogether? Only 2 more for me..... Looking forward to last one on Friday!
Lisa you sound very like me in terms of the exhaustion.... Don't be worrying about having to walk you have worry about recovering first..... It took me almost 6 weeks to the day to be able to walk any distance but I still get easily fatigued and have to walk slowly and sit down if my car is too far..... If I'm on a slope it completely knackers me but I'm not so bad on the flat.
I didn't have chemo the first time as that was a different cancer it was a grade 1 stage 1 with no nodes so had rads and tamoxifen.... Had E-CMF chemo with next tumour as it was a triple negative grade 3 but had no nodes so didn't need tax but then I had this recurrence so had tax and carboplatiin. You can only have certain amount of certain chemos like epirubicin..... But in terms of numbers some people especially those with secondaries may have chemo for years and years.
Trudi well done getting back to work.... I'm probably going back some time in may on a phased return when that gets sorted out.... My work has forgotten to pay me sick pay and been on full pay but should have been on half pay since mid Jan as I had sick leave in the 12 months before I went off this time 😞 now I'm due them back over 1 months salary.... Should have kept quiet lol.
Weme hope the rash gets better soon and isn't too annoying and doesn't interfere with you starting rads.
Sofie I agree that the rads are a walk in the park compared to chemo.... But I guess for some it might be more troublesome if they have side effects from the rads and didn't get any with chemo or didn't have chemo... It's not really a walk in the park compared to not needing to have any treatment all LOL
Gail my mum had a normal Mammo she got her results last week.
Kym I don't think I have been through any worse than anybody else..... For me it's easier going through it for a third time as I know what to expect more than I did the first two times and I know that there are others out there who have a much worse time of it. Don't diss your own experience as it is shit!
I have put for you below the link to BCC's publication relating to bra fitting and clothing. Hope it helps.
Kym & Gail, I'm still having treatment too. Two more chemos to go, next one on Good Friday. Should be finished by mid May. I'm having rads at the moment too, no. 8 today so 7 to go. Haven't had any SEs from rads yet. I would say it's a walk in the park compared to chemo, but we've all been told off for using that phrase before. I'm feeling very tired but have been for the past 6 months so not sure I can blame rads.
Lisa, you should talk to your BS or BCN about bras, or if you're having immediate recon or temporary tissue expander, your PS or PS nurses. I would be surprised if someone doesn't talk to you about this when you go for your appt. I have a couple of sports bras which fasten at the back which I've never had a problem getting on even with ALNC. My more comfortable bras are post mastectomy bras, even though I don't use a prosthesis. Whatever you choose, remember you never have to pay VAT on bras again. I went to John Lewis in Solihull before my Mx and though they are not the cheapest they do have a specialist assistant who was fantastically helpful. Once you have got the fitting right, you can always shop around for cheaper suppliers. People also talk highly of the bigger M&S stores which also tend to have specialist staff. What ever you decide, do buy some bras before your Mx.
An update... I've been to see BCN and she thinks it could be a heat rash as she checked me over and said it is spreading over my back, chest and on my other arm so she has changed the antibiotics (just in case it is that causing rash in other areas, not reacted to ab before but you never know) given me a different antihistamine as the one I was taking didn't have much affect and told me to ring her back on Friday and let her know how it was. My doctor did ring me but I told her that the BCN had decided I had better go in and see them rather than my GP. So, watch this space.
I hope everyone else is enjoying the hot weather, seems that might be the cause of my demise although I've never suffered with heat rash before apparently the chemo can make you more likely to get these things.
My Rads are meant to be starting on Tuesday, I am really hoping this rash wont stop me from having them as I would much rather just get all the treatment over and done with.
LL - I found sports bras really comfortable but bear in mind they go over your head and I found it difficult to raise my arm for a while. Front fastening is ok too but you won't want uinder wired as digs in.
I am day 3 on rads today and so far so good, feels a bit tight on my chest wall but using plenty of cream. Doing lots of stretching exercises at gym to try and stay supple.
I have gone back to work part time ish, try and just do mornings only but sometimes get carried away, hazards of running your own business I guess.
I started tamoxifen same day as rads as I was told to start it when se's from chemo had worn off, so will wait and see what se's I get from that. One of the worst se's has been hot flushes, every hour or more especially through the night and it has just started to improve so fingers crossed the tam doesn't do that as well. !!
Fairy - I will still be about on this site as I like to keep up to date with how everyone is getting on.
Kym and gail.....im still in the treantment camp too. I have an MX and rads to go through too, so i cant see my active treatment ending before june/july. I have the appointment to see me breast surgeon on 17th April, so i dont know how long after that he will do the MX, im hoping its in April, just want to get it done now as t he longer it takes the more i sit here worrying about what else may happen. Still got one more chemo to go next week.
Weme, hope all is well and the AB's do thier thing.
Lulu....did you have chemo for each occurence? Isnt there a lmit to how much chemo we can have in a life time?
Also, did any of you have to buy any specific bras before you had your mx at all?
Im in bed......i cant seem to shake off the tiredness with this tax, it takes so much effort to do anything. Im supposed to start walking in the evenings with a friend...but i get knackered just walking down the path lol
weme - i think you should phone your gp's back and tell them you really need an appoint, its not like you've got a cold or a bit of sore throat, do they not do a rapid appoint, where you can get a 5 min appoint to disciuss 1 problem only?
Lulu - like you said, what thet don't know 😉 just don't put any cream on just before going when they could smell it lol
And i will think of you on my 1st day back in work, it certainly has been a long journey for you, funny how you will always remember the date (sept 6th!!)
Kym glad to see you on here again, i go through phases of not coming on for days then on here loads, but message me anytime on FB.
and to Kym and Gail, if it goes a bit quite on here, just send me a PM then i'll get an email, something of a "oi, we're still here"
Last Rads, done and dusted, i felt better about this than i did with last chemo, because i knew last chemo effects would still be around for a week or so, i know effects of the rads will to but its a bit of an unknow for me.
I am sat in back garden and it is baking, i back on to woods and its great at the mo because no leaves on the trees, come summer, i'll have no sun at all, theres one huge tree i'd like to chop down.
i'm signing off now, i've whittered enough, have a lovely day all, all the best for last rads tomorrow Lulu
Thanks for your support, the jury is still out on what's wrong with my arm, BCN rang and talked to me about it and said I should get my GP to look at it, she will also talk to my surgeon about it (she isn't in today) and ring me back, GP hasn't any appointments this week so have left it that she will ring me and talk to me about it. Hot off the press, BCN just rang back and said they want me to go and see them as they may change the antibiotics - ho hum, off to Gloucester we go... better go grab a bit of lunch and go. I will update you later.
Gill - Hope last rads went well. Looks like you have a good plan for returning to work. That would be great if you could get a permanent transfer.
Linda - Can't believe you feel up to going to the builders so soon. Fingers crossed you get good results on Friday.
Weme - Hope the infection has cleared up.
Lulu - How would they know if you used the cream if you don't tell them? Has your Mum heard about her mammogram yet?
Kym - I also found it difficult at the stage between 6th and 7th cycles as I'd been told at the outset I might only have to do 6 and I kept feeling like I could have been finished. It must be tough feeling like everyone else is moving on but it's amazing how quickly the last 2 cycles passed. I still have mx and rads to get through too so am not too far ahead of you.
Lulu, you must be so fed up of all of this as its your third time around and it's been part of your life for the last 6 years. I feel pathetic wingeing in the circumstances. It's those awful few days after chemo when you're laid low that are hard, when you feel you'll never feel well again. This last time was especially bad, but I think next time I may start feeling more positive because I can say, 'only one more to go', and then, 'yippee, last one!' Chemo no 6 seemed such a long way from the finishing line.
I was hoping that my Onc would reduce the dosage of the last 2, especially as, when she had another good ol prod about yesterday, she said that she couldn't feel a thing in that boob at all. (the lump disappeared and my boob returned to its normal shape after turning very distorted, after chemo 2) but she said she didn't want to compromise the effect of the treatment. So, I'll just get on with it. But I may go and see the doctor as re taking some antidepressants. The counselling didn't really work for me - she said I was a very positive/realistic person, which I am, when I'm feeling well, lol! (plus, I'm not good at showing my true feelings to somebody who is 'trained' to analyse me! If I was talking to someone who had BC themselves, then that's a different matter, coz they truly know how you feel).
I hope and pray that this is the very last time you ever have to endure all of this and that you can just get on with your life!! I hadn't realised that you are a midwife too. Are you returning to work as a BC nurse?
Gill, last dose today, yippee!
Weme, have the ABs done the trick?
Hi to everyone else - hope you're all very quiet because you're either back at work or out enjoying the glorious sunshine 🙂
Linda good luck on Friday..... I'm on tamox too restarted is about 3 weeks ago..... Hot flushes aren't any worse for me on it.... The flushes from tamoxifen are nothing compared to the ones i got on chemo and after my hysterectomy... But every Is different. Linda your commute will be hard going if you go back to work too soon... Do take it easy.
Weme hope your infection clears up and you don't need to be admitted tomorrow.
Gill it's good that OH are supporting you..... 17th April is the 6th anniversary of when I was diagnosed the first time.... It was Easter Monday in 2006 and the same day as I registered as a midwife.... Good luck for your final zapping tommorow..... I'll be right behind you on Friday...... My skin is quite read on my chest and my back.... Think my back is worse and it's a bit itchy.... But they still say no cream (but what they don't know won't hurt) LOL!
Kym you will get there.... Your last two swampings will fly in I'm sure but it does feel hard that everybody is rushing ahead of you..... I'm not planning on going back to work just yet...... I'm signed off till 1 April but as I just finish rds the day before I think I'll get another month off to get back on my feet and I have all last your annual leave so think I will bolt it onto the end of my sick leave so it's likely going to be about June before I'm back to work and going on a phased return to start with. If you are feeling low it's worthwhile speaking to our GP and she can help organise counselling or if give you medication if she feels that's appropriate. I have been on antidepressants since diagnosis and was planning to stop them but then remember the last two times I got really down after treatment so gonna stay on them for a few months longer.
Take care pretty ladies xxxx
Evening Ladies (or should that be Morning!),
Gill and Lulu - brill that you're both finishing rads this week, and then you can both try and get back to some sort of normality, apart from Herceptin treatments (does that have side effects?) And yes, that seems weird Gill, that your skin will get redder after rads is over and done with? Oh no, do you reckon that Tamoxifen makes hot flushes even worse? I've noticed that my hot flushes are just awful about days 3-8 after chemo, after that, they're far less fierce and I get fewer of them.
Weme, hope your ABs work so that you don't have to go into hospital.
Linda, hoping your results will be fine on Friday, but it's no point me saying try not to worry, coz I know I know when it's my turn, waiting for results, that I won't take my own advice!
Well, I still have 2 chemos to go (really suffered this last time and I was worried I was sinking into depression), and I'm feeling pretty lonely because everyone on here is nearly all done with treatment and will be returning to work when I still have a mx/auxilliary clearance and rads to do. Where's Judes? I think even most of the December ladies are done with chemo too. I'll be Billy No Mates!
By the way, love your new profile pic, Gail. I must change mine!!
forgot to say, i'll be starting tamoxifen on thursday, that will be exactly 6 weeks after finishing chemo, not looking forward to that either. dreading that hot flushes will get worse x
hi linda - i know once i get back into work i'll be fine, at the moment its just the thought of it, don't envy you that drive to work, i know the doc would have signed me off for longer but to be honest once my treatment is over i would feel a fraud staying off, i certainly think i'm well enough to break myself in gently.
My skin is feeling pretty sore after todays rads, thank goodness its the last one tomorrow, i've been warned that the redness / soreness may continue to get worse after rads has finished, I was a bit surprised about that
its understandable to worry about the results, I know i was a bit of a wreck when i got mine, fingers crossed for you for friday
Good luck with the wall, i hope you're not building it! 🙂
Good Afternoon ladies
I am just loving the sunshine 🙂
Gill - I think my rads finish in May and I know i will have to go back to work after that,part of me just cant wait but the other part is pretty scared. I have a 38 mile drive to work along motorways which I am also dreading, you are lucky having a local office. I do have UNUM involved who help getting you back into work so I think i will be on a 3 - 6 month phased return. Great as my 2nd grandchild is due in June 🙂
Weme - I hope too that those ABs work for you.
Lulu and Gill fab that you are finishing you treatments.
Are you taking Tamoxifen ? I started a couple of weeks ago and not sure if its a side effect but I am so desperately tired all the time.. Could be the effects of the operation, and not sleeping well , just dont know..
I am starting to worry about friday and the results from the operation and node clearance... nothing I can do though..
Well off to the builders now to buy some bricks to build a wall in the garden - The joys of being at home 🙂 I love it.
have a lovely day
weme, hope those AB's sort you out very quickly
Lulu - i don't really feel ready to go back to work yet either, physically i think i'll be ok, but needs must, 17th April, i will be back. I've jsut spoke to occupational Health and he has said he would support me staying in local office (4 miles) for 3 months, so i don't have to travel 22 miles to work, so thats a relief, after that i'll probably have to go back to my office, but a lot can happen in 3 months (a permanent move, i hope)
End of phase 3 tomorrow, yay 🙂
It's been pretty quiet on here lately, it's good to see some sign of someone talking. I've had to go to the hospital today as my arm on my op side has a very large red area which is very hot and itchy. bCN has given me a high dose of ab's to try and get rid of it with strict instructions to ring on Wednesday and let them know how it is. If it isn't any better I may ave to be admitted to get ab's intravenously. Hopefully it will get better with the tablets.
I hope everyone's enjoying the sunshine.
Gill I had no 16 today I finish them on Friday.... I did ask again today why no cream as I'm red and itchy on my back more than around the clavicle.... They said it was still this theory that people would use the wrong cream so they advise none..... Good luck for your return to work.... I don't feel quite at the going back to work stage just yet
Gail loving your new pic and loving the sunshine.... It's been fab.
well i caught up on posts pretty quickly today, lol
Lulu - i looked at that report, it was quite interesting to see the results, the diprobase has definately helped the soreness for me, my skins not too bad now, only 2 rads left, you'll have finished yours now won't you? I had appoint with the rads doc today, she said she was happy with the way things are going and didn't need to see me again
Gail - like your new pic, i certainly have been enjoying the lovely weather, really hope it lasts esp over the easter hols
i'm looking forward to easter hols, but dreading it too, as i go back to work the week after, i'm bit worried about it, i'm sure i'll be fine but its a scary thought to go back after 6 months off, i'll be doing a phased return in a different office which is nearer to home, i do know staff there but i don't know who knows what about my circumstances, gulp!!
hope everyone is enjoying the sunshine, and those who have recently had surgery are recovering, those still on chemo not suffering too much and those on rads not too sore
Linda - Hope you're recovering well.
Not too many posts here for once. Hope that means everyone else has been out making the most of the weather. I don't quite have the energy, but it's nice to see the sun anyway.
Have finally updated my profile pic. Hair still a bit scarce but was getting a bit fed up with the old photo.
Theresa I'm sorry but your pink wee story made all my family laugh.
Gill my unit don't like you to use cream as research had shown it doesn't actually do anything to improve the skin.... But using the wrong cream can cause extra damage so their view is use none while your having treatment but aqueous cream is provided for after treatment. I think more recently there have been a few studies which have shown that some creams are ok but my unit still says no!
This us a table of outcomes showing no real difference from a paper produced in 2010 reviewing studies relating to using cream.
Linda glad your through surgery and hope the drain comes out soon.... My drain was removed the day after surgery even though it drained 100ml in 24hrs.... I did get a wee bit of a seroma afterwards but nothing Major.
Hope your all doing ok ladies
hope you feeling ok, the numb / tingling feeling is normal, for me the feeling slowly began to return to normal, and 6 months on i still have some numbness under the arm and breast area, i'm sure eventually this will go back to normal too
I had drains in for about 5 or 6 days, i also went home with them in, your BCN should go through the excerises with you, have you gopt an appointment booked with her
hope you enjoyed your cake, remember to take things easy
Hello lovely ladies
What an absolutely beautiful day its been today.
I went in on Wednesday 21st and had my surgery, starting with the guided wire, then lumpectomy and anc. I had to stay in over night but that was coz the operation wasnt til 4pm and it was about 6.15 when I came out.
Thursday back home with a drain fitted. To be honest I just feel really battered and bruised which is sort of to be expected !
Its now saturday and the drain is still in tact, Im still losing too much for the district nurse to take it out... though not looking forward to that bit.
I wasnt given any instructions on what exercises to do when I came out but found a leaflet which is for after breast surgery so can only hope the couple of exercises I am doing for week 1 are the right ones. Real tingling like pins and needles in my surgery arm - assuming thats normal ?
I have been reading through the posts and can see a fair few are already now on Rads, I think thats a good 4-5 weeks away for me...
I hope those that are having side effects have all been minimal.
Has anyone else started tamoxifen yet, I started mine a week ago. Nothing really has happened that I am aware of but I suppose it takes a while to get into our system.
Lisa - my hair watch is that my family say it looks like fuzzy felt !!! its all coming back slowly but surely. No new bottom eyelashes yet ...
Trudi - oh fantastic about the holiday - It will do you good to go away.. and the gym... wow - good for you.. slowly but surely does it 🙂
I hope everyone has a lovely evening, I have my daughter in law coming over to cook tea... lovely and she has made me a cake...
Lulu - It was great to see you again. Hope you keep your energy and your skin doesn't get any worse for the last week of rads.
Teresa - The comment on pink wee made me laugh too.
Just had the last neulasta jag, so waiting for final SEs to kick in now.
hahaha....pink wee, that made me laugh!! 🙂
Lulu - why are you not to use aqueous cream? my unit gave me diprobase and have told me to use plenty of it, up to 4 times a day if required, when i asked for another tube, they said they were only supposed to give 1 tube and did i have any other cream, i said i had aqueous ( i bought in readiness for rads) they said that was fine.
my legs seem to be aching quite a bit over the past couple of weeks, i feel like an old woman when i get out of the car or off the sofa, can you get this se's after you finished chemo? i didn't really suffer like this whilst on chemo
have to agree that a bit of sunshine lifts the mood, can't wait for easter hols for some days out with kids, even if it brings return to work closer....
haha lol what an idiot I am I thought you had written "turn wee a bit pink" but no you had written "turn a wee bit pink" phew!! Thought that was a new side effect...
Theresa no pink wee on rads... Just got a wee pink patch of skin on my chest and back where I'm getting zapped.
Gail lovely to see you today..... Hope the SEs are gentle on you for your final swamping.
Trudi I'll see if I can find that leaflet I have tried insure pink in the past and it wasn't that good for me but will have another look as its different circumstances again.... I had mine from getmy insurance in the past which was very reasonable and covered m or cancer.
LL re hair watch.... I have fuzz on my head all varying lengths of short! But averaging about 5mm.... Sparse eyebrows and lashes. Leg hairs are growing back in but just fine hairs... Very very fine on the foof although still have a few straggelies at the edges which never fell out.
I had a bit more nergy today and my legs weren't aching so much.... Six weeks today since my final chemo so maybe iv turned a corner or maybe I ws feeling better cos t was warm and the sun was shining!
14 rads down 6 to go.... Seen by the onc today was happy with my skin even though it's going red I'm still not to use aqueous cream.
Take care ladies
I just watched that little documentary that Lisa recommended a few pages back - it was lovely. My one regret is that I didn't take any pictures of my breasts before the mastectomy. Really wish I had!
Hope you are all progressing well.
Linda: hope your op went well and you're feeling relief that another phase is over.
Weme and Theresa: great news about your results.
Audreytoo: well done on completing rads.
Lizzy: enjoy your holiday, you deserve it.
Lisa: thanks for the link - she was very honest about the mx. Good luck with last Tax and hope SE are minimal. You are right about a new positivity on this thread, coming with nearly the end of treatments and the sunshine.
Trudi: enjoy your holiday ion Malta. Congratulations on feeling well enough to go to the gym.
Kym: hugs and sure you'll find the strength from somewhere to get through the last two.
Lulu: Great that your rads are nearly done.
Been feeling more energetic this week and managed a walk to the chemist today - only about half a mile round trip but it is another achievement. Have also baked this week and found it quite therapeutic - chemo brain had gone for that.
Not going on holiday abroad this year as I assumed I would not get travel insurance while still having active treatment (Herceptin) and also can't predict how I will feel later on in the year. Will go down to son's in Surrey when baby is born.
Hair is still about 1mm of fluff but not patchy - doesn't seem to have grown much this week. Difficult to tell what colour but probably grey!
Onwards and upwards on this journey!
Take care all, love, Liz, x
Trudi - thanks for that info re- insurance, i'm not planning anything abroad this year 😞 but its useful to know, and your gym instructor does sound good
Lulu - lucky you too going somewhere warm, i think we all deserve a holiday.
Teresa - excellent news re- your lymph nodes
Lisa - you are so right about what you have said about the past 6 - 7 mths, i certainly now feel there is hope for the future whereas there have been times that i was thinking about my funeral, as yes it was secretly. I may not be going on holiday this year, but i will next year, and year after, :))
Gail - hope your last chemo went ok today
Kym - you made me laugh at the thought of you lying down and wait for the dog to come back to you
hope everyone else is all doing ok xx
Lisa, it's a strange thing but i had 3xTAC first, my hair started falling out after 2 weeks so I shaved it like you did. Then I noticed before my last FEC (2nd of 3) I had a little re-growth. 3 weeks after my last FEC, it started falling out again (Weme will tell you there was a lot coming out in hospital) - I thought it would all fall out or I would get bald patches but it didn't, it shed for a week or 2 then stopped, and what didn't all out carried on growing, so I now look like I've got a reaasonable head of (very short) hair - quite dark, but short - I suppose the longest strands are about 2cm long, but most around 1cm. I shall have to put a new photo up, as this one was 2 weeks ago and there has been a substantial amount since then. Luckily my hair is very thick and coarse and grows quickly! Quite hairy legs, but not much re-growth on LG.
Christine, thanks yes healing OK - but the cording is not very nice - I'm going for some manual lymphatic drainage next week, private health paying as lymphoedema nurse appt will be about 4 weeks, which may be too late! Can't wait that long, need to get more movement in my arm. There is still a little fluid behind my wound, but it is fine now, still feels really strange, but honestly with a softie in I don't think anyone would know. Please try not to worry too much, but plan on needing a week totally resting afterwards. Dressing totally fine and I started cooking after the first week off. You will need to arrange for someone else to walk the dogs that first week, and maybe the second as well.
Trudi another insurance company supposed to be very good is insurewith. Did you try then? I must arrange cover for our week in Spain. I wasn't going to bother to get cover for pre-existing but apparently if you are on tamox and you get a DVT (more likely with tamox) when you fly, you wouldn't be covered.
Also, re flying - advice from a friend of my Mums who had BC -she always flies with a lymphoedema sleeve on her affected arm, even though she doesn't have lymphoedema, just to help prevent any swelling. Worth doing I think.
Lulu does your wee go pink on rads? Why?
GTG and get some tea in the oven or no-one will be eating tonight.
hows everyones hair doing now most of you have finished chemo?
Mine started to grow back a while back, however the taxotere has started to make it fall out again but not near as drastic as the FEC did....its just a few hairs falling here and there, but no bald patches thank God.
Trudi the gym sounds a great idea. It sounds like you have found a very good instructor and so there shouldn't be an issue of doing the wrong thing and overdo things either.
Gail all the best for today! Nice to see Lulu in real 🙂 Lulu maybe you could pop in too next time I'm in hospital haha.
Teresa, good to get your results. Must be a big weight off you now. Great they have been very positive 🙂 How is everything healing? Still getting Seromas? How much can you move your arm around? Are you handicapped at daily tasks like dressing, cooking?
Have a MX date for the 11 April, just don't know what to expect re recovery from that. You read all sorts of different stories on the forum.
Christine xx (Dec Darling)
Hiya ladies, more posts going on now, takes a little longer to read again.
Fairy - I haven't heard anything from Paula, I hope she is ok, I start rads next week so I will keep an eye out for her. Can't really remember what stage she is at, think she is waiting on the mx.
Lulu and Gill - I got a leaflet from Macmillan which has a list of insurance companies in that cover ladies in our situation. One of them was called Insurepink (I think, will check) and wasn't much more than normal insurance but have to wait 2 weeks after rads finished before I can take it up. Its a risk but I will mull it over. The rest were around £200.00 to cover all of us which I would be happy to pay for peace of mind. I go 3rd July for a week, the radiographer (?) said this would be fine as long as I use strong SPF.
The gym went well, I started with 10 mins on the bike which killed my thighs as still got leg ache from the chemo but improved as I went on. The chap who runs it was really good, he had done loads of research into our condition and had changed all the exercise accordingly so as not to put too much pressure on my mx scar and to avoid lymphodema. Hopefully then I can just build it up so bigger exercises.
Lulu - I'm in at 1pm today, so should be there is you're Rads are at 2. Would be good to see you again if you can make it. Can't believe you're getting so near the end.
Lisa/Kym - Hope you're starting to feel better. I really hate it when food tastes so awful. When you tell people who haven't been through it I don't think they understand how horrible it is. I find the back pain lasts longer with each TAX and am still getting the odd twinge but I'm also putting it down to chemo and not anything sinister.
Gail good luck for your last one.... What time are you in? I could pop over to see you if your still there when I go for rads at 2pm
Good results from your surgery ladies.
Lizzy and Trudi I still can't walk along and inclining path without it really hurting my muscles so no idea when ill be fit enough to consider exercise but do seriously need to lose the stone I put on although already lost half stone from stopping the steroids and going back on my water tablets.
Trudi when are your hols? Lizzy have a fab time skiing. I have just booked a holiday too... Well not me exactly I'm going away with my kids and sister and my parents.... It was our Christmas present from my folks and we are going to Minorca in June and we are all looking forward to a bit of sunshine.
LL sorry your still suffering.... My fingers aren't numb but still tingly and tender and feel butterfingersy... And yes fizzy! Ask if you can get biotene saliva replacement gel... It really does help.
As for discussion with surgeon you might want to know what the options for reconstruction are if your planning to do it? If you are needing rads then they often dont want to do a recon until at least 6 months afterwards and often you have to be a certain weight of your getting a delayed recon so maybe you could ask a few questions relating to those issues.... Good luck.
Debbie hope your not feeling too bad after your second taxing.... Guessing the side effects will be kicking in for the weekend.
I'm now 13 rads down 7 to go... Starting to turn a wee bit pink but not too bad really. Off to Aberdeen on Friday for the day with my mum, sis and daughter as its daughters 21st next week so we are doing some celebrating.
Love and hugs ladies
Fizzy fingers - BRILLIANT!!! Cause thats EXACTLY how my finger tips and my toe tips feel.
I keep eating ice cream! Because its sweet and cools my dry cakky mouth. My mouth is so dry, like my tongue has no moisture. There are worse side effects i know. - but jhezz this foul mouth and foul taste is just horrid, my mouth taste seems to have got worse today. My hand rash has returned with vengence, itch itch itch!
As for a holiday, im really keen to move house so any cash i have i want put towards that so im prepared to forego any holidays this year, however we have already discussed a caribbean cruise next year, i did a caribbean cruise in 2009 - truly awesome, anyone who is friends on FB with me, i have some pics in my album of that cruise - i went with my mum on that occassion as she is a seasoned cruisaholic! But we will see what happens as perhaps a long weekend wouldnt go amiss - however for me, it HAS to be somwhere hot,i gave up holidaying in th UK ages ago after several holidays were always ruined by weather.
Good results for weme and teresa post MX, pleased that part is over for you both....onwards and upwards. I have had the letter to see my surgeon to discuss my MX on 17th April. I have no idea what to ask him......any ideas? Should i do any research before seeing him, id like to think i can have a mutual discussion with him rather than feel like im being told what i must do because i know no different or any better.
Can you all remember just 6-7 months ago how we were all just starting out, look how far weve all come. Many have seen the back if chemo with new hair sprouting forth, some are just coming to their last dose, some through thier surgeries, some just starting RADS. A few months ago, some or most of us felt like our lives were over, secretly, a few of us were planning our funerals, heck, i know i was. But look at us, the majority of us are still here, still supporting each other, but now we see that there IS a life after breast cancer. Yes We still have down days i know, but there is defo an air of positiveness in here.....I likey!!!
Just wanted to wish you good luck for last (?) chemo tomorrow.
Will catch up with everyone tomorrow.
Take care, love, Liz, x.
Linda, I hope your op went well today and you are back home in your own bed, recovering.
Weme, great news that only 2 nodes were affected! (when I had a SLNB last November, they took 5 out, and 4 were affected, so I'll be having a full auxilliary clearance when I have my mx. My BCN said that if only one was affected, that they would still take out the whole lot).
Teresa, great results too!
Lisa, you sound as exhausted as I've been with this last lot of tax. It's taking me a lot longer to bounce back this time around, and I'm worried about the effects of what 2 more lots of Tax will do to me. At this rate, I'll only be getting back on my feet the day before I have to go and get my next lot! Thankfully, the hot flushes have subsided a little - they are always horrendous about days 3 to 7, and I don't sleep well. My back has really hurt the last couple of days. I'm putting that down to the nasty tax tho (coz sinister thoughts have started to raise their ugly head this last week, but I know that that is because of the chemo, it's SEs and coz I'm so tired I can't think straight). I watched the prog you attached a link for, and it was really poignant, made me both laugh and cry. I shed a few tears when she had her mx. I haven't thought too much about my own imminent mx, only as another hurdle to get over, and that it will be easier than this horrible chemo. But it really IS a big thing, isn't it. I know I have no choice but to get on with it, but even so . . . I still can't quite believe its happening . .
And I've read your blog too. You write very eloquently!
I dread to think how much I weigh. I'm eating a lot more than normal, only in the hope that it may taste better than what I last ate! Everything tastes b****y awful!! And it just sits in my tummy like a brick. Plus I am getting hideous indigestion after everything too, the lanzporozole isn't really working! I can't wait for a simple glass of water to actually taste cool and refreshing and not like it came outta the swamp!
Gill, love the 'fizzy fingers' term - that's exactly how they feel, lol.
Good for you, getting to the gym, Trudi. At the mo, it takes all my energy just crawling round the fields with the dog. When he goes running off after a hare, it takes all my willpower not to just lie down in the grass for a nod and wait till he comes back (he NEVER catches them, dunno why he bothers!) Are you in touch with Paula at all? Is she ok?
Lizzy, great to hear that you are getting back into some sort of normality, and that you feel your energy is returning. There is hope yet - yippee! Coz I think the tiredness is the worst, isn't it - when you are tired, there is a knock on effect with everything else. Have a great holiday!
Gail, last chemo tomorrow, brill!! And best of luck to anyone else having last chemos too. I think most of the November girls are on rads now?
Weme/Teresa - I'm so glad you're results were good.
Linda - Hope the op went well today.
For everyone planning holidays abroad, would be interested to hear how you get on with travel insurance. Would like to either have a holiday later in the year or move house (that's probably a bit ambitious though).
Had my blood tests done this morning for last chemo tomorrow. Fingers crossed will be OK as really want to get this one out of the way. I've been trying to work out who else hasn't finished chemo. Have a note of Kym, Judes and Filosofie, but can't remember anyone else. Hope Judes is doing OK with the weekly chemos - I thought before I started Tax it would be good to have smaller SEs but at least I can still have a good week to look forward to when I'm miserable.
I got my results too!
They took out 12 nodes on clearance, none of which were affected (but of course the chemo would have killed the cells off if there were any in there - on SLNB one was affected with macromets). The tumour had shrunk down to 5mm, but there was still extensive DCIS (about 7cm!) but generally that is unaffected by chemo as the cells aren't very fast growing. The tumour was grade 1 and showed no lympho-vascular invasion, so I think that's quite good news in general. Radiotherapy planning next Monday and starts 10th April, so Weme a little bit ahead of me.
Still very low in energy, but managing to get out and do more. Have asked for referral to physio now for cording rather than waiting, as there is bound to be a massive long wait!
Lisa you have had a hard journey - good on you for keeping your spirits up (I read your blog post today!) and being open - it's funny isn't it how we're all so different, I have been telling everyone, and some people are very private - my sil didn't tell anyone other than immediate family. Could you not get a holiday this year, later in the summer? Even if it's just in this country? I have booked something up in Spain for the last week of the summer hols - I MUST get away! I am going to watch that show tomorrow. I wanted to watch the other one you recommended, Five but not on terrestrial TV 😞
Lizzy you and me both with the hot flushes! Darn things 😞
Gingersmithy yay! Must sort out meeting soon.
Filosofie good luck with the rads
Hope Linda's op has gone OK.
Sorry to anyone I've forgotten, no more posts to scroll down to in my little scroll box on here.
Lisa - i've just spent the last 50 mins watching that program, it was strange going through the whole journey with her, it was almost like watching a precis of the last 6 months of my life! (luckily little one had art club after school so had some extra time before i have to pick her up) She was very brave, i would have been crying a lot more early dx, i couldn't even say Breast Cancer wtih out crying at first
Lizzy - good on you back to running, and to Trudi going to the gym, i keep thinking i need to get motivated to do something but haven't as yet, maybe i need to book a holiday to give me the incentive.
Trudi, have you got your insurance yet, and did you have any trouble finding any?
i don't have numb fingers but i do keep getting pins and needles (or fizzy fingers, as little one would say) thing probably happens 20 times a day, it doesn't last for long but i wish it would stop
Hope all are well 🙂
Oh and I must sort out a picture, my hair now growing back as well, still quite sparse and a lot of it white so not sure what it will looklike on a picture........
Fairy - PICC line came out very easily and no pain, did get stuck, but a bit of pushing and pulling sorted it out. I expeected it to bleed loads but is didn't at all. They just put a dressing on it for a day and then I could remove it. Now a week down the line and its comppletely healed.
I have just booked a holiday, so excited, I had two weeks booked off last year, beginning and end of August with a view to having a holiday abroad, ended up having lumpectomy first week and mx second week so that was that! Hence now very excited, it will just be nice to escape for a week. Going to Malta which we haven't been to before.
Now off to first gym session, have told the instructor he has got to treat me like an extremely unfit person and take it really easy as I am still not even 3 weeks past last chemo and feet and hands still extremely sensitive, although having caught up with the posts, I have been extremely lucky compared to a lot of you ladies with the se's.
Only a few days till rads start........
Glad to hear you are feeling much much better, i know that numb digits feeling - I'm still suffering with my hands and feet too - yet I still have another TAX to go. Have a great great holiday, kick back and enjoy it fully and try to forget what you have had to endure over the last few months. Im so looking forward to a holiday but I doubt it will be this year.
Just watched an hour program about a woman in Ireland who had breast cancer, she was very open about her treatment and how she felt and so much of it hit the spot with me. Its only available to watch online until Monday so grab a cuppa and have a watch. Some of you may have seen this already.
Hope everyone else is keeping up well.