Starting Chemo in Nov 2011

[Lulu34]

just a reminder that quite a few of us are meeting in birmingham on the 22nd if anybody fancies joining us.... send me a pm her or on FB... my fb accout details are in my profile xx

[Daysie]

If anybody is looking for us we have migrated to Facebook under 'Calendar Girls' there are about 48 of us, it's a Private Group but easier to use. PM if you would like to join us!
Paula (aka Daysie)

[Guest user]

Hi L4W, good to hear from you again. Was beginning to wonder what had happened to you. Sorry you're having problems with Herceptin, but hopefully you'll have had enough benefit from the reduced dose.
I finished rads on 24 May and was hoping the next step would be my Mx, but had developed skin mets while on rads. I'm now looking at doing another chemo Capecitabine. Waiting for a CT scan as well to check for any other mets, but as I had one at the end of March I hope it won't show anything new. If just dealing with skin mets and primary tumours in breast then I can still hope for a good few years with a relatively normal life if the new chemo works.

[gill13]

Hello to any ladies still posting on here, was nice to read the catch up from L4W, Hi L4W 🙂 sorry to hear that you're not getting on with Herceptin, but like you say there are trials going on where they're only giving 6 months, And hello again to pleasant 1, it was beginning to look like Pleasant1 and Weme forum lol
The facebook page is good, there are quite a few ladies from different stages and its not all about BC, I found myself too frustrated on here, trying to get on for starters then I lost a really long post, so went off in a strop! lol
Pleasant I would try not to beat yourself up about your previous mammo, I can understand why you are but I know for a fact, if it had been me I would have been leaving there relieved that there was nothing wrong.. I often wonder how long my lump had been growing away, and I only found it by pure chance, I wasn't a regular checker.
So long as this posts successfully, i'll pop back soon Gill x

[weme]

Hi Pleasant
Yes it was a biopsy that they did from 3 directions behind the nipple, but you could see the cancer, I had inflammatory BC which made the skin look like orange peel, all pitted and what I could feel was a thickening of the skin which they could see on the ultrasound they did. I think they knew before the tests came back that I had cancer but wouldn't say for sure until it was confirmed from the biopsy, they sent me for a mammo after my first appointment but it didn't show anything up at all, I guess they do a mammo for everyone who they suspect and there could have been lumps that they weren't aware of I guess. I am glad they did the tests as some people with IBC just get sent away with ab's to start with as it can look like an infection, luckily they decided to do biopsy straight away as it is an agressive type of cancer.
It must be possible that it wasn't cancer when you first went to them 2 years ago, can they tell whether it was there then or not? I've never asked how long they think I've had mine, is that something that they can tell do you think? I guess you don't want it to be cancer so if they tell you it isn't you are so relieved you just want to leave it. Hopefully they've got it all now, did you have a mx? Glad you got your rads over and done with before your birthday, I was going through chemo for mine, I had it a week before my birthday so had a rotton one last year, hopefully it will be better this year.
Weme

[Pleasant1]

Sorry Weme; I'm still not understanding how they realised you had it if the mamo didn't show anything. How did they then diagnose it and believe you? I'm guessing they also did a biopsy; which they should have done with me at Salisbury. Instead, age 41, I simply got a pat on the head and sent away with a BC leaflet! I'm 44 now by the way and finished rads the day before my birthday. x

[weme]

Hi Pleasant
I found my cancer myself, I can't say lump as there wasn't one! I am too young to be on the mammo screening (45), I found what I thought was a lump behind my nipple during my regular check the breast at home, went to see my GP and she referred me to breast care clinic and it all took off from there. As part of those checks, they did a mamo but it showed nothing so my concern is, if the original cancer didn't show, how will they know if it's come back with just a mammo?
I read your first link and it is so right, spot on. I've even put my house on the market as I feel I need a change of scene!
Good luck with your checkup next week, I think mine will be a bit of an anticlimax as I can't see him saying much but you never know do you? Let me know how you get on.
Weme

[Pleasant1]

Hi Weme
Good to hear from you. Mine wasn't picked up two years prior to diagnosis either and by the time I was diagnosed it had moved to three large lumps and lots of nodes affected. So surely something must have been there two years prior when they mentioned: 'hmm, CLOUDY area' but never took biopsies!!! I'm still kicking myself I didn't push for a check one year later and bloody annoyed that, if there was any doubt, they didn't suggest I return to get checked in six-12 months! How did you discover yours and any ideas why it wasn't it initially detected?
It seems we must muddle on without knowing what's what, keep everything crossed and trust to luck. Perhaps they take blood tests as part reassurance. From what I can gather we only have an annual mamagram but not other scans. I wonder if everyone's letter with nodes affected says: 'high risk of recurrance' as well as 'the cancer is curable' and if this is said to cover all eventualities. It so does your head it! Here's a link to a very good recent addition of a blog that sums up pretty much exactly where we are (i.e. in no man's land!) at this stage:
http://keepcalmandkeepon.blogspot.co.uk/2012/06/different-life.html
Also, I received an ear bashing from a cousin about doing this, that and something else yesterday; which also did my bonce in. Luckily I have a partner with superior brain power and, as well as the above, he also dug this up for me (re Alkaline diet and lots of hooey!)
http://sciencebasedpharmacy.wordpress.com/2009/11/13/your-urine-is-not-a-window-to-your-body-ph-balancing-a-failed-hypothesis/

[weme]

Hiya
I have my follow up appointment with onc next week as well and was wondering the same thing regarding has it gone. I've had no scans or anything since before I started treatment so how can they tell whether they got it all or not? I would be interested in what others will be asking at this stage, I guess I want to know what is done monitoring wise to keep a check on things. I have a mammo in march next year but that seems so far away, and they never picked up my original bc on the mammo I had during original diagnosis. I guess it is a worry that stays with you forever in the back of the mind.
I'm back to work full time but still mostly working from home, I'm trying to increase the number of days I go into the office each week but it's easier just to stay home and work!
I hope everyone is doing well.
Weme

[Pleasant1]

Hi All - hope you're all doing well. I'm not so keen on the fb thing as am wary of my fb becoming mostly bc related. I'd rather keep it separate as need some light relief in my life but am missing you all!
A quick up-date on me is that I've finished rads and have my follow up appointment with the oncologist next week. I've got to prepare some Q's but other than 'am I free of cancer?', which obviously they can't answer, I'm not sure exactly what to ask. I'll take my supplement list and get info. on what safety net checks are in place. How do we know how well treatment has worked for us and how do we keep calm and carry on? x

[Pleasant1]

Hi All - hope you're all doing well. I'm not so keen on the fb thing as am wary of my fb becoming mostly bc related. I'd rather keep it separate as need some light relief in my life but am missing you all!
A quick up-date on me is that I've finished rads and have my follow up appointment with the oncologist next week. I've got to prepare some Q's but other than 'am I free of cancer?', which obviously they can't answer, I'm not sure exactly what to ask. I'll take my supplement list and get info. on what safety net checks are in place. How do we know how well treatment has worked for us and how do we keep calm and carry on? x

[Daysie]

Hi L4W - good to hear from you. A lot of us have migrated to Facebook, c/o Teresa's FB page. It's user friendly and good for sharing photos and easier to post messages etc. I think we pop in here from time to time, but nowhere near as often as we used to since the Forums changed over and all the difficulties with access that followed.
I have sent you a PM and hope to see you soon!
Paula x

[Lost_4_Words]

Hi Ladies

OMG what a nightmare getting on here has been, I tried to come back just as the site changed and just couldn't get logged in, then when I finally did I couldn't post so I gave up for a while. At least it gave me chance to catch up although we all seem to have gone very quiet, hope that's cos we're all becoming ordinary again 🙂

Trudi, well done on stopping smoking and hope the diet is going well too 🙂

Liz, those heart scan results are brilliant, my first was 34%!!

Well not sure what happened after chemo finished but I disappeared into a black hole for a while and just hid away from the world. 😞 Rads went well with no problems and I've had my follow up, bit of a waste of time travelling 20 miles for a two minute appointment, quick look at area and off I went. It was just after the B/Hol and it was chaos so i was nearly 2 hours late going in. Unfortunately Herceptin is not going as well and I've been told they will stop it soon. I've had 6 (of 18) and I had to beg for them to give me a few more. My onc has agreed to give me 2 more then review it again, my latest heart scan was 42% and they are worried that if they continue they may damage my heart (if it isn't already). They've reassured me that some is better than none and I know there are lots of trials using only 3 or 9 but (and I know it sounds silly) I wish they hadn't said at the beginning that I'd have 18 then I wouldn't feel like I'm not getting something I need. Am slowly getting my head round it all. Once I've finished Herceptin I have to go back to see my cardiologist for tests to see what's causing the problem and if there's anything she can do. They've told me all I can do is gentle exercise and rest when I need to so as I still get very tired just pottering at home I've decided not to return to work just yet. My onc did make me laugh when we were discussing it, he said 'well to be honest you'll probably be neither use nor ornament and more of a hindrance than a help', cheers for that!! 😉

Tamoxifen is hopefully doing its job but the SEs are yuk 😞 think I've got the hot flushes under control with evening primrose oil, they haven't gone completely but they seem to have reduced. One weird thing I've noticed is when I have a hot flush I get a really cold patch on the back of my neck, strange. 😉 My joints are really painful and the cod liver oil doesn't seem to help (maybe needs longer so I haven't given up on them yet) it's mostly hands, hips and feet so I hobble about like an old lady and have to be careful not to sit about too much. One tip I got from my onc, if there are any natural remedies you want to take you can ring the hospital pharmacy and they have a list of what's ok and what's not recommended. I need to get fit and lose some weight (put on about 2 stone) but found the running machine was making my joints worse so OH treated me to a cross trainer and it's going really well, I've lost about 9lb so far, I have to be careful not to over exert so only do 5 mins (3 times /day) at a time and will slowly build up. And of course the beautiful weather we've had lately has meant salads are back on the menu, we had our first new potatoes from the garden at the weekend and they were delicious 🙂

On the upside, hair is growing (everywhere), even had to shave my legs! Don't wear Wendy (the wig) at home but still not brave enough to go out and about without her. Has your hair changed? mine is now dead straight (even LG) and very grey. Am wearing my prosthesis most of the time now and the more I do the better it feels, only problem I've had is stopping it creeping up to my shoulder when I wear bra tops and with the warmer weather I've put it in its soft cover as I found it a bit sweaty. I've decided not to go for recon, think my body has been through enough lately and until they sort the heart prob the thought of an 8 hour op terrifies me so I've been looking at different options for prostheses and think I'll probably go with a stick on as they seem more secure and reduce the movement and risk of falling forward when I bend. My nails are slowly getting better, they keep peeling in layers but those that came off fully are starting to grow back nicely.

Sad to hear you're all moving over to FB hope you'll still pop on here every now and again to keep in touch and if you do arrange a get together let us know cos I really would like to meet up with you all.

t.t.f.n.
L4W

[Guest user]

Hi Ladies,
PM me too please, Theresa.
Agree with you Paula about the brain - I seem to be getting worse. But sleeping longer that normal and still feeling fatigued. I cancelled my appointment for a prosthesis as I didn't want to take my wig off and it was still too cold to wear a blouse. They called me the following day to make a new appointment and I declined for at least 6 months. To be honest I am quite happy with the softie and I don't fancy having one that causes problems.

Went for my 3 month review today. My bone density scan was fine so not to have another for 2 years instead of annuallly. The heart scan still excellent at 74 but with a + or - 10 so considered no change from previous 2 of 80 and 79. She said the 'down' on my face will sort itself out like everything else! Feel a bit like I'm marking time!

Onwards and upwards and hope to see you all on FB soon!

Take care all, love, Liz, x

[keepthefaith]

Paula I have PMed you too.
T x

[Daysie]

Hi everyone, managed to find my way back here could somebody also PM me with the link to our Facebook page as I think it will be much easier to navigate!
I'm doing OK, although awake very early again, 4am seems to be usual these days, had distressing dream and woke up crying - haven't done that for a very long time :o(
It's weird, you think you're fine, trying to carry on as normal, then feel very down. Some days I've been very short tempered since chemo finished, wanna have a go at anybody who whinges about little things that don't really matter after what we've been through. For example, my neighbour, a few doors down, put a note through my door, politely asking when I was going to do something about my big tree. I've never seen or spoken to her before, she left her home phone number. So I rang her. She was aggrieved that my big tree was blocking the sunlight from her garden. I don't know how I kept my cool grrrrrr - she offered to contribute to have it felled. I was planning on chopping top half of it down last Autumn, then priorities changed, obviously. This neighbour sounded very drunk on the phone, ended up pouring her heart out about her husband leaving her, etc etc. I told her my situation. It turns out that she works at my hospital doing the chemo mixtures in pharmacy!!! What a small world. Then I thought, omg, I hope this woman isn't psychologically unstable and gets the mixtures wrong...what a huge responsibility, although I'm sure it's double checked lol. I told her that I will be doing something about the tallness of my tree, but not my priority, it will be done in several weeks time, probably in the Autumn when the leaves have come off again. A whole year after diagnosis...
I went to the Orthotics department at the hospital yesterday and had fitting for silicone prosthesis, I was surprised to be given new boob there and then and walked out with it in my genie bra. It is the same size, shape and feels very realistic. I think the nurse who issued it was expected me to be elated, but it's very sad to be given new boob in a box :o( I just want to be normal and not have this black cloud following me around. It's very stressful trying to act happy when inside I was want to shout and scream. I think chemo affects your ability to think - maybe that's part of the plan, zombie state to numb the emotional pain.
So now I have a new friend - in the box, silicone boob, to go alongside my wig, my denture, my glasses and contact lenses...lol. It feels surprisingly heavy, slips inside my bras, it's too big to fit in the pocket part of my bra, and it slips a bit into my cleavage area, and when I bend forward you can see the gap and scar :o( Guess I will have to buy one of those bras with a lace insert, or sew some lace in an old bra. Have to be careful not to puncture it, and extra care that my cats claws don't go through it lol, so best cuddles without it!
Hope everybody is doing as well as can be expected. I start my radiation therapy planning on 6 June and then daily sessions from 13 June for 15 days. Haven't studied what to expect, just going to get on with it, can't be worse than chemo, so should be ok.
Getting sleeping again, going back to bed - hope to see you all on Facebook 🐵
((hugs)) Paula x

[keepthefaith]

Diane and Trudi, I've PMed you. If it doesn't work get back to me.
Anyone wanting to join up on FB is welcome, Kym, Lisa, Lulu and I are on there along with others, so just PM any one of us.

[Guest user]

Hiya guys, finally at last I can post, I have been trying nearly every day, can someone tell me how to join the facebook posts please as Iam finding this site very frustrating now.

I have given up smoking now for 8 days and its going really well. I am getting a lot of support which is good from the local surgery. I am on Weight Watchers,can't remember who asked me now but I find that the easiest diet as I always feel full.

Trudi

[keepthefaith]

Hi Lizzy
I will PM you...

[Lizzy1977]

Diane
Sorry to hear you need more surgery 😞 hope you have a lovely holiday though.

Ladies, how do I subscribe to the Facebook groups?
Lizzy

[gooseberrygirl]

Hi Ladies,
Havnt been on site for ages, and well its all changed! How do we Join the facebook site and what do we search for on Facebook? cause i'm really rubbish at that too. But would like to keep in touch with all the fantastic women who kept me going through Mastectomy, Chemo and Rads, we all deserve a medal.
Feel much better, energy levels up, Rad damage not lookin too bad, toenails lashed on 'literaly' with surgical tape at the moment, pains in knees and awful hot flushes, but still goin and feel positive despite needing second mastectomy, to be done in September as have abnormal cells not destroyed by the Chemo and to prevent more problems in the future, Sigh ! one boob or two does it really matter?? Tamoxofen should sort the rest out.
Off to Spain later today, want to swim in the sea and enjoy a glass of wine in the sun, i will raise a glass to all you wonderful ladies and wish us all health and happyness x
Thankyou everyone, Love Diane x

[Guest user]

Good Evening Ladies,
I have tried a few times to come on here and write something but Im afraid it was all alittle confusing at the time. I think I still had my Chemo brain... not saying that hasnt left me now.
I am doing okay my surgery of WLE and ANC back on 24th March has all healed nicely now and I have completed 5 of the 23 Rads. Travelling to Cheltenham is a bit of a nightmare, 2 hours to be in there for 5 mins... but I am not moaning, if it all does the job then I am one happy lady.
Lisa, I had a seroma and had to have it drained I think up to 4 times, it was nearly as big as a Tennis ball under my arm, if it continues to fill up I know there is a steriod which can be given which apparently stops it.
Hasnt it been the most fantastic weather this last week .
Unlike alot of you I havent yet managed to get back into the office, its 40 miles away in Warwick so Im going to wait til after radiotherapy then take a phased return back.. I feel tired now so Ive no idea how I will feel when I am travelling and working.
I joined the Snowdrop group at St Richards Hospice which has been really nice, there are 5 of us ladies who have had breast cancer and treatment over the last 12 months, its just been going speaking to someone else face to face.. When I want to ask those silly questions , I just ask away..
I hope everyone has had a lovely weekend ,
Linda
xxx

[Lulu34]

Well done all you working ladies.... I just feel completely zonked all the time and then wake a stupid times but still feel sooooooooo tired.

Kym... My weight is still much higher than im happy with but have dropped over half a stone since finishng chemo.... So hopefully it will keep going inthe right direction for you too.

You should be able to send a pm by clicking on the persons profile pic on their post and takes you to their profile where is has a send message button.

Lisa glad you bumped this thread up again i had lost it..... Hard to believe how quiet we are on here now when were a very chatting bunch before.... But like you im doing most of my chatting on FB.

Sorry your getting pain from your wound hopefully the seroma will die away abut you can get it drained if its uncomforatble i had one in my chest and was such a relief when it got aspirated.

Hope you hear about rads soon..... And you may find that the prostethis would bother you even without a seroma during rads so might be better sticking to your softie for a wee while.. Good luck with the fitting.

Im still getting pains in my feet and fingers.... If i dont take a painkiller before bed i wake in the night (more than usual) and the aches really bother me.... Not sure how long this goes on for.

Oh well the sun is shining and im yawning again must be time for an afternoon nap xxx

[Libralady]

Just thought id say hi, not posted on here for ages as the site is running really slow for me, plus i seem to be spending alot of time on the FB groups loool.

Hope everyone is ok, im doing ok. Still quite a bit of pain from my mx wound which is disappointing as most of you guys seemed to have breezed through healing from mc. I have a seroma on breast area and under arm and the fluid underneath seems to be putting pressure on the scar if that makes any sense.

The external scar looks clean and dry though, but just underneath the scar constantly itches however.

Went into work this week for 2.5 days, took it easy, no pressure. No appointment for RADS yet?.. Have my fitting appointment for prosthesis coming up this thursday but am worried how it will work with this swelling ive got.

Ohhh and the nerve pain........is MAD

[Guest user]

Hello Girls,
Thank you for your Birthday wishes. I had a lovely day, altho it was exhausting having visitors in and out all day. But you're only 50 once! OH and I went out for lunch, and in the evening we went out for an Italian with son, daughter, and daughters BF. There's no way I could have handled a party. (I should have been on my way to New York for the trade show, but nevermind, there'll be chance enough next year). I got lots of lovely prezzies, cards and balloons, plus masses of flowers. OH has organised for us to go to Bath next weekend. I'm a lucky girl! (can I be a girl, at 50?) I hope you had a relaxing birthday, Gail. Thankfully you had a break from rads and didnt have to get up early! Hope rads is still going well for you and you're not sore or too tired.
I've been shattered since, altho God knows why? I feel I've run a marathon, I hurt all over, especailly my legs, and I'm sooo tired. I weighed myself tonight and was horrified to see I weigh 11 stone 1lb. A pound heavier than the day I had my daughter, and the most I've weighed in my entire life. So I'm on a real downer. I need to start exercising, no matter how much I hurt!
Lizzy, hot flushes are truly awful arent they. Mine are bad enough now, so dreading starting the Tam! Mind you, they're not as bad as a friend of mine who lierally drips when she has them! 😞
Trudi, I'm not liking the sound of the excess facial hair! 😞 But well done for losing the weight! Did you go on any particular diet? (Didnt you start at Weightwatchers?) And Best of Luck to you stopping smoking! You going to start tomorrow?
I'm off to see my surgeon on Friday morning. I had my mammogram last Wednesday, so I'll have a better idea of what sort of surgery I'll be having. A WLE if they can find evidence of the tumour (with the understanding that I will have to go back and have a mx if they dont get clear margins), or a mx straightaway - plus an ANC either way.
Gill!! Well done on doing the Race for Life today!!! You have done brilliantly, and I'm sure everyone here is as proud of you as I am!! xx
Liz, it must have cheered you up no end seeing your beautiful new granddaughter! It made me laugh tho - you putting on your washing machine when it was empty 🙂
Paula, great to hear you are healing well after your mx and that your consultant is very happy with how things have gone. I dont like the sound of your fingernails coming off tho! (I dreamt last night that half of mine fell off) Were they sore? I've also got that horrid peripheral neurolgy going off in my toes and soles of my feet. Its like hot burning pins and needles, but numb at the same time. Its quite difficult to walk at times. I was ok all the way thru chemo, it was blasted no 8 that did it!
And yes, am I daft or what! There was I asking you to give me your number again coz I'd lost all my PMs, but you'd lost yours too, derrr! Lol. We can't even send PMs now, can we? Or am I being particularly dense?
Lulu, how are you these days? Do you still tire easily, or is that much better now? I hope you manage a phased return to work. I don't believe ANYone can just go straight back into a normal working week after all of this!
Kym xx

[Daysie]

Oh yes...I keep thinking of things to say...I think I've got LibraLady's appetite, can't stop eating, anything and everything, my appetite has returned big time!, I guess I've put on about a stone since final chemo :o(
I must go on a proper diet lol, but it's soooo good to be able to eat again without worrying about toilet effects lol
x

[Daysie]

PS: Still hoping we can all meet up one day or weekend? later in the year.

[Daysie]

Hi Lulu
Good to see you again! You look well (cliche!) and hair returning yeayy! How are you doing?
I'm ok thanks, can't believe it's been over 2 months since the last chemo, the weeks are going very fast. My mastectomy was on 2 April and feeling like I'm healing well physically, but emotionally not so good, I can't bear to look in the mirror at my operation scar, it looks horrendous, although healed well, I feel a great sense of loss. Not too bad when I wear a bra with sponge boob, I've got a couple of very pretty bras from NicolaJane website (I can recommend a black and cream embroidered one code 7021) I've got 2 of those!
After the mastectomy for about a month afterwards I felt like I'd been kicked in the ribs by a horse, especially the side and back, then I started stretching my muscles with some exercises and it's much better now. Somebody said maybe the surgeon may have to go in between the ribs to access things - I don't like to think about it too much lol. My scar area is very numb and there are a few bumpy bits and small seronoma, but the consultants have said everything is good and healing very well, the tumour was shrunk from 9cm to 2.5cm and the surgeon was very pleased, said chemo worked extremely well, and histology pathology report was all good news. Consultant said he doesn't need to see me again until next April and then annually after that.
I went to see the consultant radiotheraphy doctor and he said that there is no rush to do the radiotherapy treatment, he said in fact the longer the gap the better, I got my schedule of appointments yesterday, the planning session is on 6 June and treatment starts on Wednesday 13 June for 15 treatments.
My hair has started to come back, although probably only a couple of milli-metres at the moment, and it's mostly grey :o( I can't wait until Sept when I can colour it!
My eyelashes have returned - all of them look really nice, although only about half as long, still growing fast, also eyebrows have half returned, some leg hair returned and lady garden lol.
I've lost all my finger nails :o( but new ones were growing under the old ones, and they are returning, but very fragile and have wave ridges, think they will take quite a while to grow out, I was thinking of putting false ones on there, but decided to let them breath! My toe nails not too bad only slight damage. I have tingling at the ends of my fingers and the soles of my feet, but remember a consultant saying that is normal. My friend had tingling fingers a year after her chemo!
I haven't returned to work yet, still don't feel well enough to return to old job, although energy levels much better. I'm planning on having a couple of language students as I have plenty of room for them, have bought some twin beds and hopefully will be ready for them in a weeks time. I've done a couple of car boot sales recently, and really enjoyed it, made more than I thought I would!
All in all feeling better, even though still on the 'journey' to recovery, it is good to feel better and going out and about with friends and family a lot more than I have for the last 6 months - very nice to be out of hibernation!
Looking forward to hearing how everybody else is, and where they are up to?
Group ((hugs)) to all who have managed to find their way back here!!
Paula x

[Lulu34]

Yay paula

Great to hear from you again... How are you getting on?

Lxxx

[Daysie]

Yeayyy at last I've found you by doing a Google Search as the search facility on this site doesn't seem to be working yet, very disappointing and difficult to navigate 😮
HAPPY BIRTHDAY KYM for yesterday, sorry missed it as I couldn't find the Nov group. I've lost your phone number as it was in my private messages which BCC have grrrrrr waiting to hear where all our private stuff is!!!!!! Hope you are having a Fab Fifty Fun weekend!

I hope everybody is ok - I will catch up with all the posts as soon as I can, it's been 3 weeks since I've been able to get this forum to upload grrrrrr.
Paula x

[Guest user]

Afternoon Ladies,
Came home yesterday after visiting new grand-daughter who is gorgeous! I had been a bit worried about airport security but it was absolutely fine. Although I cheated a bit and got a wheelchair as it is a very long walk at both airports to the gate.
I'm still very fatigued and like you Troodles I have a lot of fair 'down' on my face - just hope it disappears soon as I don't want it to turn charcoal with Herceptin! Head hair is growing slowly. Nails are a disaster but growing slowly too. Onc nurse told me it would be at least 6 months after final chemo before I would begin to feel better - so another 3 months to go.

Lulu: I have regressed again to chemo brain like you. I put the washing machine on with no clothes in it on Monday - that's definitely the daftest thing I have done.

Hope everyone is doing as well as can be expected.

Take care all, love, Liz, x

PS Happy Birthday to Kym, xx

[Guest user]

Not sure how I ended up with all the font description stuff on my last post. I copied and pasted from Word as have been so frustrated with not being able to do paragraphs when typing directly in the new comment box so seems to be a weird translation. Have since found out via one of the feedback threads that I need to do shift+return and not just return.

Trudi - Must be so frustrating to have the facial hair growing when you want it on your head instead. Hope onc can sort out the hot flushes.

Gill - My birthday was on Monday. I'm doing OK on rads so far. I haven't been adding anything in the Subject box and it still sometimes posts and sometimes doesn't. I left it out as wasn't sure what it would do.

Lulu - Phased return sounds like a good idea. Hope you can sort that one out.

[Lulu34]

Hello folks.... This still isnt very easy to navigate hey.

Lizzy your hairs looking good.... I have flushes too but i just kinda ignore them but mine tend to be during the day rather than the night.

Kym birthday wishes for tomorrow.

Trudi well done for the weight loss and stopping smoking what a wee star you are.... I lost a bit of weight immediately but its only slowly coming off but probably cos im still a bit of a sloth... Im sure it wil get better when im back at work.

Gail hope your rads are still going ok.... Im still signed off at the mo.... Until 1st june but might go back on a phased return then.

Lulu xx

[gill13]

Hi Trudi I must have posted as you were posting, good to hear from you, flushes are pants aren't they, i was taking evening primrose which seemed to help but they started gradually creeping back again, so i've stoppped the ev prim to see what effect that has. Well done on shifting your weight, i have lost a little, but thats only because of not eating so much junk, still got more to go, but i really need to try harder, and ditto to you about the FB group xx

[gill13]

hi ladies, i tried posting on herre the other night but because i didn't put anything in the subject box it cleared everything, boooo, so i gave up again. Liz, i have continued to dye my hair all the way chemo, just wash in wash out whilst on chemo and now i'm using semi permanent colours, so not sure what effect herceptin would have on my head!! Nice to hear from you Lizzy, and i feel like you that life is getting some normality back. Gail - hows things going with you? is it your b'day on friday too? Audrey, we've all struggled with the new site, and for any of you who aren't aware there a facebook group been set up, a mix of quite a few different starting months ladies, so a few of us Nov ladies have joined, how about you all, Liz, Gail, Audrey, Lizzy? Lulu is there, so is Lisa, Kym, teresa, weme, to name a few! Let any of us know and we can add you to the group Right i'm off back to FB now, speak soon xx

[Guest user]

Have finally figured this site out, its not anywhere so easy to get around as before which is a shame. Lizzy - my hot flushes on the Tamoxifen are awful, I am going to speak to the onc in June about it and facial hair is increasing. I kinow that its good and it means its working but I don't want to have a beard!
Hair still slow growing, not far off taking my scarf off, have a no 3 all over but still thin on top so will wait a while.
Skin from rads is all peeling now, did have very sore patch in armpit but that has cleared up.
Weight has gone now,it hasn't taken long which is a relief. So I have chnaged my diet, joined the gym, lost the excess weight, I am giving up smoking on Monday, doing it through the smoking cessation as I feel ready for it now.
Trudi

[Guest user]

Sue – Hope you’ve managed to find a May
thread to join. Waiting for treatment to start can be the worst time and you’ll
be amazed in a few months how quickly the time passes during chemo.

Weme – Hope you don’t have lymphoedema and it’s
just the healing from rads. Swelling was listed as one of the possible side
effects in the booklet my unit gave me. Hope you can get a good fit for your
prosthesis tomorrow.

Kym – Have a great birthday tomorrow. I know
what you mean about not feeling like celebrating yet, but try to do something
nice anyway. I didn’t do much but as OH was off at least the alarm didn’t wake
me too early and I had a day off from rads.

Liz – Hope you had a great visit to see your
granddaughter.

[color=black; line-height: 115%; font-family: "Arial","sans-serif"; font-size: 9.5pt]Gill – Can you blame Herceptin brain now?

Audrey – That’s encouraging being told the
hot flushes mean Letrozole is working. Just about makes it worth having them if
it’s true.

Lulu – That’s good news being discharged by
rads onc. Are you still signed off just now? Good luck for son’s exams.

Lizzy – Nice pic. Good to hear you’re getting
more back to normal.

[Lizzy1977]

Hi ladies, I've not been on here for weeks and now the new forum website has thrown me! I've updated my profile pic as my hair is coming back. I will soon stop wearing my wig at work. I'm still not sleeping due to hot flushes but other than that am slowly getting back to normal. I will read the posts when I've figured out the new website!Lizzyxx

[Lulu34]

hi Audrey the new site is a bit confusing right now hopefully it will improve in time
a lot of people have moved over to facebook as its much easier to use and keep up with whats happening.... if you (or anybody else for that matter) wants to join us send me a pm.
glad your skin has recovered so has mine and im still uber tired with intermittent insomnia.... as you can see! and was so bad on sunday night i spent the whole night awake... read boring journal articles to put me to sleep but that didnt work tried playing colitaire and sudoku as that usually does too but nope ended up just getting up about 7am.

gail hope you had a lovely birthday... that was my 3 year anniversary of being diagnosed with BC no 2 and its my dads birthday too.

liz hope you have a great time meeting your grand daughter.

gill my chemo brain is much worse now chemo is over... i mean like really bad... i click on a new tab on the pc to look something up and have no idea what??? completely lose my train of thought and stop speaking mid sentence cos i havent a clue what i was saying! very confusing and disconcerting to say the least.

BF has his first exam tomorrow and my son has his first next week.

i had my review from my radiotherapy oncologist on monday and shes happy with me so iv been discharged... said my armpit is tight though and need to regular stretching otherwise might need physio.
off to bed now as i think the sleep fairy she is a comin!
nanite love Lulu xxx

[Guest user]

Hello All

Haven't posted for a while because I have been busy. Just logged on and found the site has all changed. Took me ages to find this forum. Unable to read all the posts so just hope that everyone is doing ok.

I'm doing ok but still really struggling with this fatigue but have been told by onc that it could take another 3 to 4 months to recover. I am on Letrozole and seem to be getting lots of hot flushes. GP said this meant that the Letrozole was working. Skin now fully recovered from radiotherapy. Eyelashes and eyebrows are back and I have a full head of hair but don't feel comfortable going out without hat, scarf or wig.

Not sure I like this new site struggling to find the sites I posted on, as don't seem to have saved posts/discussions.

[gill13]

Hi Ladies, my 1st post for a good few days, i gave up trying due to frustration (Kym, a perfect profile pic lol) Happy Birthday to Gail for yesterday, and Kym, not till friday I know (same day as one of my best friends, right back to primary school!) For some reason I can't scroll back to read the most recent posts to refer back to 😞 Liz, i laughed at your comment about the hair, I have been naughty all the way through treatment and put colour on mine, my hair hasn't been its natural colour since i was about 14!! Sue, sorry to hear what a bad time you've had, I'll send you a pm too. Really sorry can't remember what else has been posted!! can't even really say chemo brain anymore 🙂

[Guest user]

Evening Ladies,
Firstly Happy Birthday to Gail and Kym on Friday. Probably better to have a huge celebration when all active treatment is finished and you will enjoy it more.
Thanks for all your good wishes on the birth of my grand-daughter, Lucy. I am off to Gatwick tomorrow until Thursday and I can't wait to see her (and her big brother)! I usually take hand luggage as I have toiletries and make-up in their house but I have so many presents from family and friends I have a full suitcase to check-in!
Sue, I thought being widowed and going through the menopause was bad, but for you to be undergoing chemo must be horrendous so soon. You will still be in the depths of your grief and that in itself is tiring so take extra good care of yourself. I am away for a few days tomorrow but will PM (private message) you when I get back when I can work out how to do it on this new site - any instructions gratefully received (chemo-brain-proofed please). Or you can PM me and I will reply. Huge hugs to you from one so much further down the line - it does get much, much better, thank God.
Good luck to you all having treatment and hope you are all as well as you can be.
Take care all, love Liz, xx
PS For Gill and those on Herceptin - was speaking to the hairdresser in Maggie's today and she asked me if my new hair was charcoal coloured. I was amazed as it is and she told me the Herceptin does that. She said I won't know the real colour of my hair until H is finished.

[Guest user]

Happy Birthday Gail! xx glad to hear you're getting a respite from chemo for a couple of days! Are you doing anything nice?
It's my 50th on Friday, but I really don't feel like celebrating it, not yet anyway. Not whilst I'm waiting for surgery, etc.
I'm still pretty tired, even tho chemo has now finished. But I guess it would have been worse if I'd not had the transfusion. I think this will be the norm for a few months now, won't it, especially after rads.
Sue, I'm so sorry, you've had a hell of a year haven't you. You WILL get through it, with the help and support of your friend and sons.
Like Lulu said, there is probably a starting chemo in May thread, where everyone is at the same stage as you, and they will be a fantastic support for you too. Make sure you are given Emend, no-one should be sick anymore with chemo. I wish you all the very best xx

[Guest user]

Thanks, so grateful for a friendly word, I'm a nervous wreck too tho' a friend who has been through it says it's not so bad, to cheer up, stay smiling...I'm trying, know you are too, wish you lots & lots of luck...

[weme]

Hi Gail
Tamoxifen isn't too bad, I can't say that so far I've noticed any difference or side effects other than being a bit depressed but it's difficult to tell if it is the tablets or if it is just natural after coming to the end of the treatment. I have had my 6 week check up appointment come through with my onc on 20th June so if I still feel the same I will talk to him about it.
I'm still suffering badly from the rads but my armpit is much better than it was and it is starting to heal, it's still quite bad all across my rib just below the wound which has been quite painful. I am also wondering if I'm getting a bit of lymphodema there as there appears to be a bit of fluid retention behind that area, I've an appointment with the nurse at my GP's tomorrow so maybe I will ask her what she thinks.
I also have an appointment on Friday to sort out a prothesis, I'm hoping that the rads wounds will have healed enough to be able to have a proper fitting, I am quite aware that the softy isn't anything like my other breast and I'm hoping that the prothesis will be more of a match!
Must go and do some work, I'm still working from home at the moment and intending to do so for a bit longer, certainly until I can wear my bra more comfortably, it really hurts at the moment and only go into work if I really have to! I've stopped wearing my wig now, the hair is still very short but there is hair there which is good enough for me.
Weme

[Guest user]

Kym – Love your artwork. Hope you’re on the way up from
the last chemo now.



Lulu –
Hope you can find a way to get your messages back. It’s a bit of a pain losing
the Saved Discussions functionality, but at least there is a way round that.
Would be awful for your messages to be gone for good.

Weme - How are you getting on with Tamoxifen?

I’m now down 13 of 20 rads. Get a break until Wednesday
for machine servicing. Luckily coincides with my birthday tomorrow. Just too
bad the weather doesn’t look so promising but OH is off too so don’t have to
set alarm early.

[Lulu34]

hi sue i think there is a starting chemo in may 2012 thread so you might find that more useful as al the ladies will be in the same boad from the start... we are now all finished chemo and many finished rads so may not have the same issues as yourself.

gail my rads are was worse after rads finished.... i hope it does something to that persistent bugger you have there.

kym great pic xxx

[Guest user]

Posts keep going missing, so sorry no individual replies as trying another quick update. 11 of 20 rads done now. No sign of improvement in firmness of skin and swelling, so starting to worry a bit. Have been told it's still early days as rads should carry on working for a few weeks after I finish.

[Guest user]

Starting chemo in 2 weeks, trying to keep going but feeling just terrible most of the time (lost my beloved husband to cancer last Oct. - this has been the most dreadful year ever)...I was so low this morning only just managed to get going, I'm new to this site, turned it up & read quite a few posts - this really steadied & calmed me & I can't thank you all enough...Like everyone, it's the sickness I dread most, must remember to ask about emend, any more "tips" wd. be appreciated. Thank heavens I have a wonderful friend who has been through it - successfully - & she's a rock. My sons are so worried - & they've had so much to deal with recently, they're desperately hanging onto jobs too like everyone today - life seems to me at the moment to be a random, bitchy mess. Any cheer-ups wd. be great!

[Guest user]

Congratulations Liz, that's great news!!! Beautiful name! Both of mine weighed 7lb 3 oz too!'

Yes, pic is one of mine Gill. Just a frazzled lady - that's how I feel at the mo coz of the gremlins on this site, lol.