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hair loss???

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Re: hair loss???

Hi everybody,
Just catching up. Prayers for you Jo, I am thinking of you.

Victoria, glad things are improving for you. Your hair looks brilliant in your photos.

Andie, I'm pleased you are not as stressed over your seroma and that you know it will heal. You really have had a rough time.

Caron, I saw the article in the Mail. I was definitely told my hair would grow back. But I agree that most of us would have had tax even if we knew the odds. Happy 21st to Jamie.

Gail, I hope all is well with you and the job is going well.

We're off to Turkey for a week tomorrow. Really looking forward to a good rest,SUN and WARMTH.

I've cancelled my appointments with the occupational therapist as I have so much on at present.

I'm seeing the surgeon when I get back with regard to my reconstruction and oopherectomy. Also I have to go to Guys to see various people about genetic testing result. I wonder if my brain can take in any more info!!!!

Love to you all,
Kathy

Member

Re: hair loss???

jo hope everything is alright with you x

Member

Re: hair loss???

Just seeing if there is any news from Jo yet,I do hope all is ok.

Eileen, yes it's a good idea not to stay long term on anti biotics because that in itself can cause other problems because the anti biotics also end up killing the good germs we need as well as the intended target.
I was on anti biotics for an ear infection (I think it was) anyway I ended up with serious thrush! not nice

Victoria sent me that article about taxotere,it was very intreasting
it's what I believed to be true,it did say that in a year you should have a full head of hair which I suppose is what Ive got now maybe still thin and eyebrowless but I'm woring on the proof that chemo is still working in my body (nails).

I wonder if the lady in the article would have had the taxotere or not? I would think 99% of women would have had the tax it's not worth the risk is it?

Gail I bet you are looking forward to the summer holidays?
I am I love summer.

We have my herceptin on wednesday and Steve's tests thursday.
Today is my eldest son Jamie 21st birthday, I bought him a little individual cake, and I put him in the telegraph,gave him the money so he could buy what he wanted.

A trawler after having water washed overboard and the plug was taken out to let the water out but they forgot to put it back so this morning the brand new juilee trawler had sunk !! haha someone is in serious trouble! haha
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Member

Re: hair loss???

Hi

Jo I hope with all my heart that you hear good news at your appointment.

When I saw my GP she was not happy for me to stay on what are evidently very strong antibiotics. She did consult with my hospital and they agreed with her. Instead it has been agreed that I can keep a course of tablets at home so at the first sign of an infection I can start them straight away, she also agreed that should I need to use them I can get a repeat prescription. She spent some time explaining why this infection is taking so long to deal with and why the wound is taking so long to heal. Her explanation was a bit too long to type here but it all made sense and she has stopped me worrying about it. It will heal given time.

Caron I know you have problems but in your photo you look good girl.
There was an article in the Mail on Sunday yesterday about some people who have tax and never get their hair back. I bet none of us were warned about that!

Gail Befoe you know where you are it will be summer and you can have your little one home for weeks on end to enjoy. The school year passes so quickly.

V glad that your wound is finally sorting itself out, and you are recovering from the surgery.I often suffer from tiredness but Peter maintains that age is catching up with me as well as continual health issues.

Kathy Hope you are OK

Take care

Andie

Member

Re: hair loss???

Jo,
you must be worried sick, we all hope it is just a cyst, I will be also sending you good vibes your way tomorrow,lets all pray it's nothing.xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

I went to complementry therapy again last thursday and the nurse who I see said, she has never ever seen anyone as badly affected by chemo as me,what sparse hair and no eyebrows and also now my nails!!
Just thought I'd share that with you all (I could have told her that!).
One girl who I was in hospital with cant now walk without a walking stick............... the plot thickens!.

Hope it good news tomorrow Jo xxxxxxxxxxx

Member

Re: hair loss???

Jo,

The very best of luck for tomorrow. I'm sending you lots of positive thoughts and hope you have the best possible results.

Hope you managed to stay on the antibiotics Eileen, and that the seroma is still healing, albeit gradually. Great news about your daughter's graduation. I know how tough that can be having studied for an MA with the OU, and that was without children. Your daughter did remarkably well.

Hope things are okay with you Gail and that you are still enjoying the part time working.

I'm still recovering slowly but surely from the surgery - though I'm struck by the continuing levels of tiredness. I'm going back to work for the first time on Tuesday as I've got a hospital appointment tomorrow.

Again best thoughts for tomorrw Jo.

Victoria xxx

Member

Re: hair loss???

Oh Jo - what a nightmare. You must be worrying so much. It doesn't matter how much they say things arem't anything to worry about. It doesn't stop the worrying! I will keep everything crossed. Why on earth do you have to wait so long for results?

Bright - Sorry to hear about the bone stuff. It all just seems never ending.

Hope you win your tablet fight Andie and congrats to your daughter. A great achievement!

Hope you're feeling well Kate and Caron.

Much Love all,
Gailxx

Member

Re: hair loss???

Hi
V I love the new photo.I'm glad that your wound finally seems to be on the mend. I have an appointment with the GP on tuesday to plead my case to stay on the anitbiotics that I am on at the moment until my wound if finally healed.Every time I complete a course and it appears to be OK within 2 weeks the infection is back and I am back to square one. They all agree that my wound is slow to heal because of infection so surely a longer course of tablets would be appropriate. We will have to see.

Jo I hope everything works out OK for you both. Life for all of us at the moment seems to lurch from one worry to another.The waiting for results gets no easier.

Gail I have had more problems with my nails since I finished chemo a year ago than I had whilst on it. They split and break and I have lost count of the times I have had to see the chiropodist for her to sort out cracked toe nails.

On a brighter note my daughter had her graduation ceremony yesterday for the degree that she has passed through the OU. No mean feat with a full time job, two young children and a husband who has to travel abroad a lot with his job.She is a glutton for punishment because having got a Bsc she now wants a BA and is partway through the study for that!

Take Care all of you

Eileen

Member

Re: hair loss???

Jo, so sorry you have this new uncertainty to phase. That wait times seem unreasonable, and hope more than anything that it turns out to be something benign. Is it on the side which didn't have bc?

I love the photo of Betty Caron - you should put it as your avatar on here. The vision of Betty with four sausage rolls in her mouth at the same time, is cute beyond belief. She has such a great personality, and all the more charming as she's such a tiny dog.

Well, my wounds have turned the corner at last and moved from sloughy to granulating. I'm still going to the dressings clinic to have them looked at twice a week, and the nurse seems to think they'll be healed over in about six weeks time. In the meantime I've got something new to worry about - as the bone density scan revealed that the Zolodax has given me osteoporosis, and I have an appointment in a couple of weeks for the HRT clinic who address hormone issues and damaging impacts more generally. Some helpful posts here though suggest that likely treatment will be tablets and or infusions with bone strengthening drugs, which doesn't sound too bad. I do feel that this whole bc thing though is consuming, it never seems to end. If it isn't one thing it is another.

Still, hoping everyone can enjoy something of the bank holiday weekend, even if the weather is letting us down.

Victoria xx

Member

Re: hair loss???

The Surgeon isn't sure what it is so sent me for an ultrasound yesterday morning! The nurse wasn't sure so got the main radioligist in the room who still isn't sure so sent me straight down for CT scan! Will get my results on 10th May!! Everyone telling me it's probably nothing to worry about, it;s all just to put my mind at rest!!! Yeah right! That's what they said last time!! Now I've just got to wait a very long 9 days!

Hope you all ok!

Jo X

Member

Re: hair loss???

Hi Girls,

I will write later - currently trying to meet some work deadlines (working from home as not up to going into office yet post surgery), and spending every other day at the dressings clinic it seems at the moment.

Just wanted to say that I'm happy to co-ordinate fixing a day for us to have lunch and theatre or whatever else we want in September time. We can decide on what to see a bit later. Look out for an e-mail from me shortly. I agree it would be nice to have something to look forward to. Having escaped the loss of any nails - my finger nails have become very brittle over the last month or so and tear easily at the top.

Victoria x

Member

Re: hair loss???

Hi girls,
So sorry to go quiet again. It's been a busy work time (my little lecturing job) and I've also been working at school 2 days a week. They are even paying me now. It's scary...but fun! Also had the best time with Kai over easter!! Just been so tired. I was in London lecturing last night and I'm not even dressed yet!
Saw my onc ...the top man...the prof yesterday for my 6 mth check. Happy with me. Still don't want to put me on zoladex though. Said new guidelines from NICE say women who have had tamoxifen and chemo...don't need zoladex too. He says no benefit to me...more side effects. But why some of you have it?? Is it just money again?? Or is this a clinical decision? I wish I could trust my medical professionals.
Jo, Caron ...My fingernails have got weaker...can't grow them. And my toenails look like they should be in a horror film. I have them...but they're not pretty!!
Need musical to look foward to too. can't remember who was sorting!
Love to you all,
Gailxx

Member

Re: hair loss???

Forgot to mention Caron, i'm still loosing toenails!!!

Member

Re: hair loss???

Yes Caron, you can get numbing cream apparantly, i seriously looked into the eyebrow thing before i even lost them!! Hope Steve gets on ok with tests, they’re not pleasant but obviously very nessesary. My husbands Dad also died of bowel cancer aged 51 so we panic every time he has a stomach upset! He must get it checked out!

Had a very bad day myself actually! Found a huge lump under my left breast last night so phoned breast nurse this morning. she got me in to see her this afternoon and a junior doctor saw me. Ive got an appointment to go back at 10:30am tomorrow to see my surgeon again, you know the one that misdiagnosed me the first time. The nurse and junior doctor have told me that they think it is a fatty lipoma but want the surgeon to confirm this! How can i trust him if he thinks it is nothing to worry about, he was soooo wrong last time! The nurse thinks that he may want to ultrasound it and has said I could get an appointment Friday. I think they should bi op it as well but she thinks he probably will not as it’s not normal procedure! Stuff normal procedure, I need to know for sure!
I’ll keep you posted!
Hope everyone else is drama free!

When are we doing our theatre trip to London by the way? It would be nice to have something to look forward to!

Jo X

Member

Re: hair loss???

Gooooorrrr has any of us got any good news??? we should change the title to unluckiest women on the planet!! (sorry how I feel).

V I know your having problems with healing (I read your other posts),hope it improves very soon.

This is quite absurd what I am about to tell you !! well you all remember I lost ALL my fingernails, well (when u have the chemo under your nails can turn red and other bits sides can turn white) Where the nail isn't attatched to the nail bed well my little finger nails have gone red and my wedding ring finger has gone white down the sides again !! This is madness I never thought it would do it again ! I won't lose them it's no where as bad as before, now this makes me think could the chemo still be in my body doing it's job?? Because this would explain my eyebrows and hair too wouldn't it.

V Steve said you can get numbing cream if I do decide to get tattoo's if there not back soon I will have to as were on holiday in 3 months, I know 3 month's sounds alot but when Ive already waited 11 months for them to come back ...................

Heyho Steve has got to have more tests done as his father died of bowel cancer when he was 54 so he's got to have a camera god I hope it's nothing just piles or summatss like that.

God someone just emailed me she had the exact same as me and she said how soon will she feel well again !! WRONG PERSON TO ASK !! lol Ive only just started getting up everyday.

hope everyone's ok xxxxxxxxxxxxxxxx

Member

Re: hair loss???

Hello girls,

I hope things are okay with Peter Eileen and that the seroma is still healing albeit slowly.

I know what you mean about school reunions Caron. There was one recently organised for my old school and I didn't feel like going. I really really hope your eyebrows grow back eventually. I have seen some brilliant results on women who have had them tattooed in - and it is very common practice in the Far East and seen as a sign of great beauty. I know you'd be worried about the pain - but I wonder if it would be possible to have the skin numbed first with a local anaesthetic. A few years ago I gashed my leg badly - and the doctor injected anaesthetic into the surrounding skin and I didn't feel a thing when he put the stitches in.

I've been out of hospital 11 days now - and still feel very tired and in discomfort still (though not really pain). I'm on antibiotics as when I went for my first dressings appointment the doctor was worried I may have a superfical infection on the implant side. Thankfully the pinkness is receding though still slightly visible. Next check-up is tomorrow. Some of my wounds are taking a long time to heal on the uplift side, and only just starting to scab over. I think I'll have some scarring as one of the wounds separated quite a bit after the operation. Though I think I'm prepared to live with this as I am wary of extra surgery now - in case it goes wrong.

It is a lovely sunny day in London so will go out in a while, though don't really have enough energy to do anything too challenging!

Thinking of you all.

Victoria xx

Member

Re: hair loss???

Hi Girls

Jo I really feel for you worrying about your OH.Life was not supposed to be like this for any of us. The only positive I can see for myself is that I know the seroma problem is a nuisance but not sinister and I am so worried about the implications of fits for Peter that I have for the moment stopped worrying about the BC returning.If it happens it happens and like our current situation I will just have to deal with it.

V I cann't believe your GP expecting you to be fit for work after only 1 week. Although I do remember many years ago my GP telling me that some people return to work within a week of a hysterectomy when I was struggling to even get out of bed.I hope that you sorted out the infection that you were worried about

Kathy I think you are brave having the genetic tests done. At the moment my daughters have got their heads in the sand and are saying that they don't want me to be tested because they don't want to know for themselves. I expect that situation to change at any time because I also have 3 granddaughters and they will want to know as they grow up.

Caron I sympathise with you over the eyebrow situation, mine seem OK but I fear that my hair will never fully recover. It has grown, but it is very fine and thin and refuses to lie in the direction I want. The hedgehog look is not becoming! I have arthritis in my spine and my hands. Tablets seem to control the back but together with the SE's of the Femara my hands are very stiff and painful first thing in the morning and then again if I sit with them immobile for any length of time.

Gail I hope you are keeping OK and the your little one is enjoying school

Take care ladies

Eileen

Member

Re: hair loss???

Hello all,
V really hope it is finally over for you and you haven't got an infection in it, fingers crossed.
Jo can really sympathiseabout your hubby with his back, as I have mentioned before I have a bad back but it is arthritis which has now moved to my hips and I think my knees will be next, as have had a couple of nights when my knees have been hurting so there next, it's no fun @ all a bad back, Gail knows too about bad backs.

Eileen about your seroma it is very unusual to still be having problems still but that is no help to you, sorry don't know what to say about it really apart from listen to the Drs, have they said it will go eventually???
I think the best thing John could have done is retire although it wasn't planned he needs to make time for himself now.

Ive just had another heart scan I hate them they tell you you can't go near your children because of the radiation.

My eyebrows have still NOT come back what is wrong with me???
I have managed to get up quite early all of last week so I'm now wondering id it's chemo still or herceptin making me fatigued??

It is now 25 years that Ive left school and there having a massive reunion for a few years not just my year , but I can't go I look like a bag of shit tied up slack I wish I looked like I did no matter how vain that sounds, can't go weighing 1 stone more still (than I did) and no pissing hair! (sorry bout swearin but u all have ur hair back and your eyebrows).

My nephews son died last night aged 3 months he was in hospital with a chest infection a few weeks ago, but they rushed him back last night but he died so yet more SHIT !!

Got Steve at hospital next week as he's been losing alot of blood when he's been to the toilet, I wish he'd have said earlier but he never told me only that he thought he had piles, but I was doing the washing and noticed all this blood on his boxers, I made him go then as I said that is not normal, even if you did have piles.

So expect yet more bad news (if that could happen?) from me ,xxxx

Member

Re: hair loss???

You have my sympathy Jo - my OH may have a health problem too though I haven't managed to get him to go to the doctor yet. It is all so stressful - like you just don't know what I'd do if anything happened to him.

I have a two week sick note from today which GP grudgingly gave me. He seemed to think I'd only need a week to recover. Nearly cried in the practice surgery as uplifted side is really painful and scars are really oozing.

Victoria x

Member

Re: hair loss???

Glad surgery is all over for you V. I May have mentioned before, but you should look into false nipple before tatoo or more surgery. I had mine done at st Georges and I swear to you it;s absolutely fantastic! It's so good in fact, that if i wanted to go topless on holiday this year, then no one would ever know!

Andie, hope you are well and i think your daughter is absolutely right. Peter was there for you when you were ill and now it's your turn! Hard to see any positives in your situation but I'm having to look after my rock at the moment as he has slipped 3 discs and is in immense pain all the time! I had a good cry the other day as I feel so hard done by and am asking the question when are our lives going to return to normality? He’s having endless hospital appointments , mri scans and is back in tomorrow for another epidural and if no improvement this time, then the next step is surgery. Usually he is so positive and up beat but because of the pain he is thinking that the way our luck has been over recent years, if he has surgery then he is bound to be one of the minority who end up in a wheelchair for the rest of his life!!! I’m usually the one who thinks the worst and he makes me feel better so i’m finding it incredibly difficult coping with him at the moment, especially as i’m still suffering with tiredness, joint pain and hot & Cold flushes all day myself. The only positive I can see in the situation is that, thank goodness this didn’t happen to him when i needed him most during my treatment, that really would have been impossible!

All good wishes to the rest of you ladies, and hoping everyone is having a better time of things!

Jo

Member

Re: hair loss???

Andie, I really hope things work out for Peter and that the tablets are the right ones. Such a scary time for you both.

Unfortunately I think my throat infection is developing into bronchitis but I'm seeing my GP tomorrow whom I hope will be able to advise whethether the antibiotics I'm taking are the right ones.

I'm having plenty of rest, in fact can't really do much else just now.

Thinking of you all.

Victoria xxx

Member

Re: hair loss???

hi

glad to see that you are home safely V. It sounds as if the hospital stay was traumatic to say the least but fingers crossed it is all plain sailing now. Please please do as you are told - i Would not wish seroma problems on anyone. Don't type yourself- dictate to someone else.

Peter has now given in his notice at work and agreed that the wisest option is to retire gracefully. He is 65 but until the epliepsy diagnosis intended working on. Life is hanging heavy at the moment because we are living with the time bomb of not knowing if his tablets are strong enough. We will only know if he has another fit.

Its strange how feelings change. I am now so very worried about him and caring for him while it is all sorted out that I have completely stopped worrying about myself. My daughter came up with the theory that we are never given more to cope with that we are able, well I would really like to go back to my quiet uneventful life please.

Look after yourselves my cyber friends, your friendship means the world to me.

Eileen

Member

Re: hair loss???

Hello girls,

Haven't meant to leave it so long writing. So lovely to read from you all and that we are all still here over a year on. Strange how expectations change with this dreadful disease. well at least mine have.

I know what you mean about the Zolodex Jo - but I'm willing to put up with the side effects if it gives me better odds of the bc not returning - I've read somewhere that there are quite a few recurrances at the two year point when womeon usually come off the Zolodax - and my onc is conscious of research on this, so reccommendation in my hospital is to stay on it for five years. My joint pains have eased up slightly after taking cod liver oil. But my still have a real problem with the flushes (hot and cold), dry skin, straw like hair and weight gain. I look at myself in the mirror sometimes and can't believe how much I've aged in a year. I see my mother staring back.

I was due to have surgery on 23rd March but it was cancelled at the last minute. I was feeling quite down about it - but then got a call on Maundy Thursday with a last minute cancellation for last Tuesday which I accepted. I was just at the point of booking a trip to Naples and was seconds from paying for the flights - so was grateful I didn't lose any money.

Initally when I woke up I didn't feel too bad - but by the evening I had a raised temperature, breathing difficulties and couldn't swallow properly or speak as my throat was incredibly sore and swollen (it looked black). I ended up spending most of the next four days sleeping and on strong antibos and oxygen. My temp at last was stable from Friday morning to Saturday and was allowed home yesterday afternoon. My throat is still sore but I can speak and swallow again.

It is such a nice spring day - just feel grateful to be alive and to appreciate the flowers and the world. I'm still at the stage where I feel as if I've gone through ten rounds with a champion boxer and feel sore and stiff. I've got quite a few seeping dressings where my skin has blistered. Apparantly my skin is thinner and more sensitive because of all the treatment - don't know whether any of you found that with surgery post treatment. I've still got my drains in but as they've reached the magic 30 ml I am going to have them taken out this afternoon.

In terms of the surgery it seems to have gone quite well and I am more or less matching now. It was a replacement of expander implant in bc side, and reduction and uplift on the other. I feel way too sore to wear a bra - but having to because the hospital insists on that. Hopefully things will become more comfortable soon.

The next stage is the nipple reconstruction which is done under local anaesthetic before tattooing. This sounds straightforward but the lady next to me was in hospital following a complication of nipple surgery. Her's died which ended up exposing the implant - so she needed the whole thing done again from scratch - at least there was just enough good skin left to allow a smaller implant. She's hoping to go back to have this replaced in time with a larger one. I'm thinking now I don't want to go back to square one - so may just go for the tattoo.

And in the bed opposite me was a lady who was dealing with her third recurrance. As the last one had affected her skin (she had IDC not IBC) she was having a replacement using tissue from the inside of her thigh - her stomach had been used on the other one. I'm not sure I could have handled a more invasive form of recon - though I'm sure the results would be better.

I was quite scared with going down with the infection straight after surgery - especially not being able to breathe properly or to swallow - but the staff were lovely and I cannot praise the hospital enough.

The views from the ward were quite spectacular - a panoramic view of London. Sometimes at night I'd look out at all the twinkling lights and watch the trains departing and arriving at Waterloo.

I've been told to avoid too much typing for next few weeks as that increases the risk of a seroma - I think with all your experience Andie, I'll be sure to heed that advice.

Hoping your heart scan was okay Caron.

Thinking of you Gail.

The only good thing about this whole disease has been finding you all. You are all such special friends.

I think Kathy is organising the September meeting - as its the theatre trip. Looking forward to that. And hoping to enjoy the summer first.

Victoria xxxx

Member

Re: hair loss???

Thanks Caron, for letting us know about victoria, hope she recovers well and quickly. Hope you are doing well yourself to.

hope everyone else is ok, Andie hope seroma is ok, what a pain for you. Hope your husband is well to, I know you've had a lot on your plate recently.

Kathy sorry to hear about braca gene, if its any consolation my friend had oopherectamy 2 years ago, she reckons best descison she ever made!

Gail, hope you are well and enjoying easter hols with Kai.

Im in a dreadful state with zolodex and in constant pain with my joints so seriously considering coming off it, but it's a very difficult call to make!

Im hoping we're all going to be able to get together for our theatre trip in september???

Keep well Ladies.

Jo XX

Member

Re: hair loss???

Thanks for letting us know Caron

Hope you are all OK. I am still dealing with the ongoing problems from my infected seroma. 5 infections since December and still having the wound dressed 3 times a week(although I am assured that it is healing-just very very slowly)

Good news is that oncology have made my next appointment for June 2011.

Look after yourselves

Eileen

Member

Re: hair loss???

Ah, that's good to know, Caron. x

Member

Re: hair loss???

Caron,
Thanks for letting us know about Victoria. I knew surgery was coming up but wasn't sure when. Hope you and everyone else is keeping well.
I'm fine, visiting grandchildren in Somerset til Sunday. I'm hopefully.today, going to find out when my surgery is. My only worry at present is that I have inherited brca2 gene and the possible implications for my daughter. Plus an oopherectomy for me.
Hope all things are good for you
Love Kathy

Member

Re: hair loss???

Hi all,
Just letting you know V has had her surgery and she is fine but very tired.

Hope you have a speedy recovery V. xxxxxxxxxx

Member

Re: hair loss???

Hi Caron,

I'll be writing on here tomorrow - just had a few chaotic days with work (and only just now finishing for the day). Hope you enjoy the book!

Victoria xxx

Member

Re: hair loss???

I had a appointment with the nutter Dr (gail I told her you called them that,she laughed her head off!).

She thought that all of a sudden that I had suddenly realised the enormity of what I have been through.
But that was b4 she met me and she said I seem to be at terms with it all (which I agreed yes I have come to terms with it all).
We worked out that it is only when I have appointments that I can't cope with and feel anxious etc (now she said that I know she is right cos I'm not normally everyday anxious).
She discharged me cos she thinks I don't need it.

I had a big chat with her about my sleeping, she said it sounds extreme (I slept 17 hours last week but I did have a bug as well.
She said it's just my way of coping and agreed it's got to be the herceptin cos after I had finished chemo my sleeping went back to 8/9 hours.

Steve seems to have caught the bug I had cos he feel's ill and he's really dizzy.
hope everyone is well? love caron x

Member

Re: hair loss???

Hiya everyone,
Hope you are all ok?
I had my mammagram in the end they asked me to wait there and then to give me my results! Everything is ok guess what I was really surprised they did it on my recon side too, they said they would normally do one on that side at the end of your precautionly mammagram but they do it as a matter of course now, it's a new thing and I said they should lower the age where women can have mammagram's and she said they are on about lowering the age at this minute,which I thought was good but I bet they don't lowerer it enough??

My recon has shrunk that much now I was having to pad it but now Ive been given a full prostesies to wear we are going on holiday in August I don't know what I will do then? cos you can see it,it comes well over the bra.

I have been really poorly with a virus it knocked me for six for over a week but I'm over it now.
Ive been doing a bit of gardening and I'm looking forward to the summer,this year I will be able to go in the garden unlike last year.
I am half way through herceptin now the only side effect it is giving me is yep you guest it more sleep!!

I can see a couple of brow hairs now but no where near enough so it looks like I have eyebrows.

I have been having some reflexology and Ive just had my first massage! that was bliss going to have that again next time, I can't lie on my stomach though because my back is too bad so I had to sit on a chair and lean forward on the table.

Eileen I hope your cavity is still healing. take care all love Caron xx

Member

Re: hair loss???

Good evening ladies,

Kathy it was lovely to see you again for the Chinese meal with the storm riders.

Andie, I've been thinking about you lots and have been meaning to call. Very glad that the seroma cavity is healing at last. Sorry about Peter though.. both in terms of his health and also that he may have to give up work. I know how much he enjoys his job.

Gail, sorry Steve's been poorly as well, and hope the lecturing gets better.

I've arrived back this evening from a short break in the North East, had to go up there anyway as I was booked onto a course in the area called 'knowing your customers'.

I've got a cold at the moment which I think I went down with after we were evacuated from our hotel at 6.30 in the morning - there was a fire in a nearby shop which set off all the surrounding alarms. It was so cold outside especially when not adequetely dressed (just coat over nightdress and no tights). Still we went on some nice day trips. The highlights were Durham (loved the cathedral and the statue of Neptune), Richmond and going on the castle walk, as well as Northallerton, county town of North Yorkshire and which has the best delicatessen I've ever seen. We also had a good look around Darlington where we stayed. The railway museum was really interesting and houses Locomotion the first passanger train in the world which was built by Stephenson (preceding the Rocket)

Going off to bed shortly to see if I can sleep off cold.

Hope to see you again soon.

Victoria x

Member

Re: hair loss???

Hi Everyone

Gail I finished Herceptin just before Christmas and felt as if my safety net had been taken away. Any plans I had to not go near the hospital for 3 months went out the window when the problem with my infected seroma occured. As far as BC is concerned I have no appointments now with the surgical team until August and I think my appointment with the onc on this wednesday will also be my last one for a few months.

I am still having the cavity wound (left after the seroma) packed and dressed 3 times a week but it is healing and hopefully the end of that problem is in sight.

My GP is super sensitive about my BC history. Due to the amount of anti biotics I have had to take in the last 3 months I have a persistant problem with oral thrush. He insisted on checking me out for diabetes and leukemia because they have the symptom of oral thrush. I drew the line on investigation when he suggested an HIV test!! If the medication I have at the moment doesn't work he is going to refer me to an ENT specialist.If its not one thing its another.

I feel OK though, just fed up with not being in perfect health - probably wishful thinking now at my age.

It looks as if Peter is going to have to retire from work. After 2 months off work following his fit while they did invstigations, he returned to work to have another fit on his second day back.He is off again while they try him on medication to try and control the situation.

Gail A & E is not the place to spend a pleasant afternoon.Is he also now off sick?

Kathy I hope you are now fully settled into life in your new home.I know what you mean about the mental side of all this. Most of the time I feel as if I have come out the other side, but every now and again this terrible worry takes over. I do feel as if I was DX as a middle aged lady and have ended up as an old one.That could be the femara but I think chemo has had a permanent effect on my skin.

Jo Caron and V I hope you are still reading and are OK, and getting on with your lives. V I believe your recon surgery is due soon. Let us know how you get on.

Love to everyone

Eileen

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Re: hair loss???

Hello Gail and everyone,
We all have been a bit quiet. I guess I assume that things are all ok.

I know how you feel when active treatment is over. We have gone through so much since initial diagnosis,surgery, chemo, rads etc and then nothing. I'm just happy to feel physically ok, but mentally at times it is a struggle. And I do wonder whether I will ever get over the tiredness.
Wondering who you are,is strange. But I know what you mean, I don't know whether I'll ever feel the same. I think I'm beginning to look like me a bit more.But I agree it is a weird feeling.

Hope Steve isn't suffering too much. Good luck with the lecture.
And how is Kai? Keeping you on your toes I expect.

Love to all Kathy

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Re: hair loss???

Hi everyone,
How are you all? I've had my last herceptin and it feels weird. I've gone from an appointment every week to a slight feeling of abandonment. I think I miss my treatment. I'm weird. Just feels quite scary and I guess I'm just meant to be getting on with things now, although it's hard isn't it? Not sure who I am anymore. Doing some teaching this weekend and dreading it. Thought it was going to be a seminar group of 20 and now it's a lecture to 80... yuck!!

Steve has been in wars. had labrynthitis (inner ear infection). Went for a walk on Friday, lost his balance and fell and has now broken his collar bone!!!! A&E for 4 hrs was lovely!

I miss you all. How are you all doing?

Much Love,Gx

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Re: hair loss???

Good evening ladies,

Very pleased you are feeling more upbeat Kathy, you are probably in Somerset by now.

Caron I remember you telling me about your grandad Arthur -and will click on the link after this post. I hope you get your eye appointment really soon and that everything turns out to be really straightforward.

Hoping things are improving for you Andie.

I've been been busy with work last couple of nights writing a presentation for Friday - where I'm delivering a 45 minute training session on customer voice. But did have time for a nap and watched Nigel Slater's simple suppers (I loved his book Toast story of a boy's hunger), and Relocation Relocation which showed impossibly expensive beautiful houses in Yorkshire.

Sunday was OH's heaven when we went off to look at bathroom suites in B&Q. It was the largest branch in the country.

I've got my appointment through for reconstruction surgery which is 23rd of March. Good to have a date as it is so difficult to plan for other things when the date isn't fixed.

Thinking of you all.

Victoria xx

Wishing everyone the best thoughts possible.

Victoria xx

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Re: hair loss???

Kathy ... yes I did think that you were triple- but just wanted to make sure as I am putting down my tiredness down to herceptin?
Or maybe it is the chemo or maybe we have been through so much were completley cream crackered!!

I had a lovely surprise today.............. my Grandad Arthur well he used to be a shepherd on Reeds Island (which has nearly gone now)
and after that he worked at Snowdon's and he had shire horses one named Peggy ( he later married my Nanna Peggy )!!
There was a picture of him in the bygones with one of his Shire horses he was collecting the christmas tree for Grimsby given by Norway.
It was lovely to see him young and one person wrote up about it and him he was Arthur Grey also known as wag and he had the stables.

http://www.thisisgrimsby.co.uk/news/Fond-memories-Cooper-Snowden-works/article-1580399-
detail/article.html?cacheBust=7eR0Aec93vcd&authid=slFE7uQo2KfXN8nwSEdl6sUzD3sKP6e6GnTqTSzVwDFmy71266269081515&successModeration=true#community

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Re: hair loss???

Hi girls,

Andie, oh dear,you have been in the wars. I'm so sorry you are going through so much and for so long!!

Caron, I have free eye tests every year as my father had glaucoma.
I haven't had any problems with it but it's worth getting checked especially as you shouldn't have to pay. You asked about my medication. I'm triple negative so i don't have to take anything relating to bc. From what everyone says, I'm lucky. I actually feel well and only suffer from tiredness. But tamoxifen etc, is a safety net and I don't have that.

I'm feeling upbeat today, I've seen my 6 grandchildren. My dla has been given to me, the lowest rate. I have had to wait a long time,their mistake, but it has been backdated to last june.

We're off to Somerset on Wednesday, to sort out the rest of our belongings. But it will be a break and a change of scene.

I hope everyone else is ok.

Love Kathy

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Re: hair loss???

Hiya all,
I was quite worried about my eyes if it could mean anything so when I went to pick my glasses up and ad to say something that when I had my eyes looked at at Chloe's appointment it must have been 10 years ago now so the lady was real nice and she said she understood why I was concerned so she had a word with the optitian, she took me into her room again and I explained and she said she will refer me then.
I said well in your opinion could it be CANCER? she said NO so I said "thats good enough for me then thats all I was worried about"
She said she will still refer me cos then they (optitians) will know that is normal for me.

So I am not unduley worried about it but maybe I should be worried about something else???
My Nanna Peggy (dad's mum) had glaucoma and now my dad is being tested for it.
For some reason I totally forgot to mention my Nanna Ethel who was completley blind at 60 years old (my mam said it was due to old age but like I said to my dad I don't believe that for one minute as she would have gradually lost her sight so it would have been well before 60) My dad agrees it was something to do with her optic nerve not getting a blood supply.

So thats that I was meant to have a mammagram when it would have been a year since being diagnosed, I found this out cos I haven't been called for one so I rung my BCN up and asked her if that was correct she said she would get back to me after xmas.
Anyway she did contact me by phone and said "yes" I should have had a mammagram last November and she would send me a appointment with a date probably around 8th Feb, so I have been waiting for this but never recieved one so last week I was at hospital so I went to ask again about it seen as I hadn't heard anything, anyway the receptionist said I am not even on the system ! (great or what! only my life in the balance here).
So receptioist spoke again with BCN Barbara who said I will recieve a letter in the week.
No I haven't though!!!
So we are now waiting till Wednesday then Steve is gonna ring them and tell them they are CRAP if I haven't heard anything!!!
Love Caron xx

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Re: hair loss???

Girls,

Happy Happy Valentine's Day. Am sending many kisses your way and will think of you all tomorrow. It will be more romantic than thinking about husband!!!!!!!!

Caron, Andie - Missed you on Saturday. I did bring chocolate hearts for you ...but guess I'll just have to eat them now ... it will be hard...but I'll get through it somehow.

Sorry to hear you're not well again Andie... no wonder you're getting fed up! You've really been through it!!
Caron - get your eyes checked. Not sure if it means anything, but just worth asking.

Wishing you all some good sleeps this weekend. I am on the wine already...so things lookign good for me.

Half Term next week and last Herceptin!!! Wow!!!

Love all,

Gxxxxxxxxxxxxxxxxxxxxxx

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Re: hair loss???

Dear all,

Eileen sorry to read that you are having yet more problems with seroma - I hope your medics can sort it out this time once and for all. And hoping you are not in too much pain.

Sleep is good Kathy and is so restorative so I wouldn't worry about the extra hours you are having just now.

It may be wise to get your eyes checked again Caron - don't know what it means to have dark spots... but perhaps you should just ask..

I've got my bone density appointment through for 8th March. I wonder what treatment I will get if I am losing density. I really hate the side effects of the Zolodex and the Tamoxifen but am willing to put up with them if they lower my risk of a reccurence.

Tomorrow we are going to look at bathroom suites for the Rye house and then have a look in Ikea as it's next door to the bathroom shop. I love the restaurant food there - especially the red cabbage salad and little meat balls.

Jo, Gail hope you are keeping well.

Victoria xx

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Re: hair loss???

oooh Eileen it never rains...................

Kate please update me are you on anything? ie herceptin etc
I was terrible today and yesterday (getting up) today I had to get up as I had a appointment at the optitians, but I was not a happy bunny I can tell you cos I was tired still, poor my household they all went through it!
The optitians had deleted me (charming I know!) they kept insisting I was new NO I'M NOT!! anyway they did all the tests and the optitian said that the backs of my eyes are very shiny (reflective) and also there are 2 dark spots now this has now got me worried!
She asked if anyone had looked at my eyes I said yes when they thought Chloe had macula degeneration disease,she said thats alright then, but now I know about the dark patches and I'm thinking Chloe must have been about 7 then so 10 years ago I wish I hadn't said that now I wish I explained properly.

No good telling my BCN I think she has forgotten about me???

At the school where Owen goes one of the girls has suddenly died she was found this morning everyone is shocked over it she was only 15.

all take care love caron xx

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Re: hair loss???

Hi

I had to have an emergency appointment at the hospital today. The area where they drained the seroma, where I still have a cavity wound, still being packed and dressed regularly, has become infected again. Back on antibiotics awaiting the results of a swab and must go back again next week. To say I am fed up is an understatement!

Eileen

Member

Re: hair loss???

Eileen, so pleased about Peter. That's one worry less for you.

Caron, the sleep thing is getting worse. I went to bed at 11 last night. Got up at 7, went downstairs, sat on the settee. John woke me at 12.30!!!
Victoria, good news on the mammogram. I knew you were having problems with the zoladex, but it does seem that they will be keeping an eye on you. Let us know when had you are having your op.
I saw my onc on Monday, she's lovely, I don't need to see her for 6 months, so on the surface all is well.

Tuesday was not so good. I have had,since chemo, dreadful problems with my teeth and gums. I had one filling which was ok. I was due root canal treatment on another tooth. I'd had antibiotics as the gum became infected but it never felt right. Thank goodness for co-codemol. But enough is enough, and I asked her to pull the tooth out.
Because of high blood pressure, she couldn't give me the usual injection and I ended having about6/7 injections and it still hurt. but the tooth has gone and I'm much happier.

Jo and Gail, hope you're not worrying too much. You both, and Victoria all looked amazing. As for you Caron, you look so glamorous in your photo.

Let's hope we can all make the next meet.

Love Kathy

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Re: hair loss???

hello everyone,
Eileen glad they can find nothing wrong with Peter will he have further tests??

KATE................

I was just saying I was the only one with this problem!! sleep
It seems you are the same as me I did start to sleep for 9 hours instead of my 13 when on chemo but I seem to have gone back to 12 again !!
I also can't sleep either then sleep forever.

No it's a good ob I never came cos we have had a bug Owen being worst hit with it,but think he is coming out of it now he's had 1 week off school, so I took him to drs yesterday who said he's got a bug ! (I knew that).

I don't think I look great yes better than I did (got to be better I looked like death before!) I just need to lose weight and grow my hair and of course my eyebrows!!
love caron x

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Re: hair loss???

Hello ladies,

Well my mammogram was clear and breast surgeon seemed happy with the bc breast after examination and is going to see what he can do to speed up reconstruction surgery as I need a smear test done at the same time. The fact I have fibroids means it is not possible to do them except under general anaesthetic.

My surgeon though is concerned about my bones as apparently the Zolodex actually sucks the calcium out of the skeleton and can cause osteoporosis - and works much more aggressively than Tamoxifen. I'm going for a bone density scan and then for possible treatment at the HRT clinic which is where osteoporosis is treated. I'm going to be on the Zolodex for five years as long the duration of taking Tamoxifen.

Glad Peter's tests were all clear Eileen. Hope he has fun on the electric bike.

Take care everyone.

Victoria xx

Member

Re: hair loss???

Hi Girls

Thanks for all the good wishes. I did miss you all on Saturday.

Peter saw the consultant Cardiologist who thoroughly examined him and had a heart scan done. He can find nothing that warrants further investigation at this point. So with the blessing of both doctors he can go back to work.

The problem of not being able to drive has been temporarily solved by him buying himself an Electric Push Bike!. It will get him to work and back every day and out and about locally to continue with all his community commitments. We have discovered that as long as there are no further problems the driving ban is only!! 6 months as long as a neurogogist and cardiologist give you the all clear, so fingers crossed.

Good luck today V

Caron you really are looking good.

Will post later in the week

Eileen

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Re: hair loss???

Good luck with your appointment tomorrow Kathy.

Eileen, hope all is well after yesterday.

I too had a lovely time yesterday - and it was so good to see you again. I woke up at 10.00 am this morning, so just beat you by an hour.

I had a quiet day today, just caught up with some housework.

Really looking forward to the special day in September with lunch and a show. Something to look forward to.

I'll let you know how tomorrow goes for me.

Victoria xx

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Re: hair loss???

Hi girls,
It was lovely to see you yesterday. I really enjoyed it and it certainly gave me a lift. Caron and Eileen, we missed not seeing you and hope things are ok with you both and that Peter's appointment went well.

I was exhausted by the time I got home, John cooked and I went to bed early. I woke about 3ish and went downstairs and fell asleep again. John woke me at 11, as we were going to lunch at my daughter's.

It was reassuring that I'm not the only one feeling tired, but I still have toally sleepless nights when my brain won't switch off.

I'll be thinking about you tomorrow, Victoria. I hope all your worrying will be in vain. I'm also seeing my onc tomorrow, its the usual check up, and hopefully nothing to worry about. Don't fret too much about your hair. Mine couldn't have been any curlier and as you can see it is almost back to normal. I used baby shampoo until recently, also Iwas advised not to apply any heat to it(straighteners or hair dryer). So don't lose heart.
Thank you again for organising yesterday!

Love to all Kathy

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Re: hair loss???

Good luck Eileen for Peter's appointment today.

Glad your scan was clear Caron and hope that you can get the pain under control from your hip. Oncs say strange and worrying things sometimes - I know mine does and I dwell on it for weeks.

Sorry you you have been feeling unwell Jo and hope the tests come back fine.

I have not had a very good week. I've been really busy at work, and my former partner who is old for his age (73) has been quite poorly and unable to go out. As he has few people in his life he can turn to for support, I have been going to see him and doing his shopping and housework. He is having difficulty walking and is beginning to have falls. I'm trying to get him to see a doctor - which is something he's resisting.

I've also had my first counselling session which went better than I'd envsiaged. I think I can relate to the brain being a complex computer which is more or less as the counsellor put it across. We went through some specific examples of when I was feeling anxious or depressed and she analysed them using a grid of four indicators: feelings; thoughts; behaviour and physiology. It made sense at the time - yet for a lot of the time since then I've been quite tearful. It feels almost as if something within me has been stirred up that I was otherwise coping even though I haven't felt carefree. My concern is what if I end up in worse psychological state than before.. any way I'll discuss my dark thoughts with the counsellor next week. And there are other counselling options of course.

Monday I have appointment with cancer surgeon where I should learn the results of my mammogram which I had last week. This one is just causing me a few sleepless nights.

I think your hair looks nice Caron and it seems silky. I really hate mine - it is dry, frizzy and wild. can't stand the sight of it and still cover it up when I go out. My plan is to have it sorted it if this is possible after my surgery.

Take care

Victoria x