71692members
376052posts
cancel
Showing results for 
Search instead for 
Did you mean: 

hair loss???

mjjje
Member

Re: hair loss???

Caron, gutted you wont be there today, was looking forward to seeing you!You're looking good girl! Try not to worry about dizzyness. If you remember I suffered with this quite seriously about 6 months ago and was devestated when they told me I had to have a brain scan, but thankfully it turned out to be nothing! likely cause they reckon is medication side effects or/and hormone reactions! Hve to say it got a lot better but has recently returned with a vegence! Am still seeing Onc regularly so they can keep an eye on me but am having such a rubbish time on zolodex that they're talking about me coming off it? have had a load more blood tests done this week as not really feeling myself at the moment so living in fear of results yet again! Get well soon and hopefully see you soon to!

Andie, best of luck for Peter's appointment today!

Other girls, c u later!
Jo X

caron_caron
Member

Re: hair loss???

Well I will miss you all tomorrow and Eileen I will be thinking of you and Peter.

I have been to hospital today and I got the results of my bone scan that I had last November now it showed nothing apart from arthritis which is why I wanted it, he seemed concerned that my right hip is also hurting me now so he manipulated my leg this way and that!!

He said to Steve that cancer can hide behind underlying problems which has got me worried now and I have been going dizzy as well so that is also worrying me now.
If the dizzyness carries on I will have to see about it.

Kate I was talking to someone the other day and it is 8 years since she had BC she is also triple - and she is doing just fine just thought you would want to know we all hear about the scare stories why arn't there more success stories??

This new photo was taken today by Steve 8 months now since chemo Eileen I agree totally about yes the hair grows but mine is still thin especially in other parts of the body I have not had to shave under my arms still! and elsewhere is alot more sparse as well,and still I have no eyebrows.

I will envy you all tomorrow whoever has the lemon tart!!!

Nearly forgot to say Dr. George was looking for my mammagram I should have had last November!
I told him I had to ring BCN up about it and he said make sure you get on to her, so after I finished in the mac suite I then went to pink rose suite to leave a message for Barbara my BCN ,she must have forgotten because I wasn't on the system still and I was meant to be having it on the 8th Feb or there abouts,anyway I have been told again I should expecting a letter! (we'll see).
love caron xxx

katemate
Member

Re: hair loss???

Hi girls,

Sorry Caron, we'll miss both you and Eileen. Health comes before anything else and perhaps we can meet soon when you both and PEter feel better.

I see onc on Monday as I missed my appointment due to snow. I'm doing quite well at the moment and have had dna test for brca gene as cancer is on both sides of family. Will not know results for a while. My mother died of ovarian cancer so surgeon may do an oopherectomy when he does reconstructions in July. Tummy tuck also included. Needs to be as I'm the heaviest I've ever been!

Hair cut has helped wonders with my disposition. The frizz has gone, and I have a good overall covering of dark brown, gentle wave. I'm not looking quite myself but am happy as the curl is disappearing.

I won't be having mammogram Caron as I had a bilateral mastectomy although cancer was only on right side. So I can forget that one although BC is linked to Ovarian cancer and I worry for my daughter and grandaughters. A bit of a worry is my daughter does not want to talk about it. Should it be a hereditary gene she does have a lot of thinking to do. I'm triple negative and the percentage of hereditary gene is higher.
I'm going down to Somerset at half term, we still have things instorage which is costing a ssmall fortune. So we're going to sort that out. I'll probably stay longer to spend time with my "precious
ones". Last time I was there I was snowed in!!

LOve to all. I hope Eileen, all goes well for PEter on Saturday. Perhaps we can meet up when I come back from the West country. I'll give you a ring.

Love to you all,
Kathy

caron_caron
Member

Re: hair loss???

sorry ladies will not make the meet either,I have a appointment at the hospital and plus I haven't been well this week Owen got sent home on Monday with a virus and think he has given me it?

I am gonna ask tomorrow about when I am having my mammagram bcn said it would be 8th Feb but since then heard nothing at all.
Hope you all have a nice meeting hope to be in the next one. xx

Gemdancer
Member

Re: hair loss???

Hi everyone,

Sorry to go so quiet again. Have not been on PC much at all. Have also felt a bit down ... January blues and all that!! I think I also put off lots of decisions and things until "after Christmas" and I can't face them at the moment. Kathy - I hope you feel brighter soon. I still see my nutter doc. have a list for him this week. He keeps me sane. I hate looking at myself in the mirror and would rather not... I know where you're coming from.

Have been working (volunteering) at Kai's school one day a week and it is much fun. I start doing a bit of proper work in March and am feeling nervous already. It's only a short contract, but I just feel like such a different person now.

Andie - caught up on all your news. You've both been through it! i remember spending last New Year in hospital and it is not something I would like to repeat! Glad to hear you are on the mend. I have heard there is an open MRI here in Oxford at the Nuffield Orthopedic Centre (NOC). Just for future ref - not sure if you could have been referred! Maybe too far for you?

Caron - jury service...fascinating!! Hope all your gang are doing well!

Bright - I had to organise conferences as part of my previous job. I don't envy you, but it can also very stimulating and exciting! Good Luck!

Hair is growing...curly and grey. (Almost one year post Tax!). My patches seem to have grown over. Still have short bits, but I think it is gathering pace now. Just not sure what to do with it.

Only two more herceptins!

Much love to you all,

Gxxx

smelltheroses
Member

Re: hair loss???

Hello ladies, just butting in to wish Victoria well with her conference. I take my hat off to you! I've done both and prefer children........ Also, Caron, I did jury service a couple of years ago and loved it. I was on a case every day and they varied from a policeman to a hardened, small time crook. All fascinating and would love to do it again!

Best wishes, Sheila x

brightlight28
Member

Re: hair loss???

Hello ladies,

I hope things will calm down now that uncle Jack is returning to Canada tomorrow. It has been good seeing him and we've been on some interesting days out in London but has left me with very little free time. Today we took the river boat outside the Tate Britain to Tate Modern and looked at the surrealist art galleries. I'm a big fan of modern art. We had lunch in the pub just outside the gallery and looked out onto the Thames while we ate. Trying to stick to the diet - lost 2 pounds so far - I reluctantly ordered the lentil stew and looked longingly at my uncle's roast beef and OH's sausage and mash... only to undo some of the good work by succumbing to almond and banana cake for afternoon tea!

Tomorrow I've got a big conference at work which I've more or less organised myself and the thought of running the day, and wondering whether people will turn up has caused me a few sleepless nights!

Sorry should have written before to say I was sorry about your cat Eileen - the thought of anything happening to Felix makes me very sad. Hoping the remaining four go on a long time.

Caron - you have made me want to do jury service at some time, it sounds so exciting!

Looking forward to our tea on 6th Feb - really close now!

Mary - I hope your hair grows back properly really soon. Lengths of time can vary from person to person. I had very long hair at the time of diagnosis, and used the cold cap. My mistake was not washing or brushing it for the duration of chemo. I was lucky in that the cold cap worked quite well and I kept lots of hair but had to cut it as ended up in a tangled mess. It has started growing again and it is down to top of my shoulders but the texture isn't very good. I bought some expensive wigs at the start of treatment and still wearing these as I hate the look of my own hair, but plan to have it coloured and some possible extensions put in after my reconstruction surgery which is happening anytime from Feb onwards.

Jo, Gail - hope you are okay.

Kathy - hope you had a good weekend.

Victoria xx

AndieT
Member

Re: hair loss???

Hi Topsymo

I finished tax 12 months ago and although my hair has regrown it is nowhere near like it was before chemo.My hairdresser, who cuts it regularly insists that he can see new hair growing, it just takes time.I keep it very short to disguise the fineness. I also had a year of herceptin which I am told affects the rate of hair growth and I am also on Femara which again causes thin hair.I suppose I am just glad that I have some hair now.

Good Luck

Eileen

topsymo
Member

Re: hair loss???

Hi Eileen-many thanks for your response.
I guess I should have realised that it was a 'long" thread when I saw the date of the original posting. Maybe there ought to be a way of altering the title when a particular thread has evolved to become a more general on-line 'support' group?

I have actually been in touch with others who share my problem -long-term bald patches/thin hair following the lovely Tax, 14 months ago!) I just noticed a recent message on your thread and then found it wasn't actually about what i expected.
Best wishes
Mary

AndieT
Member

Re: hair loss???

Hi Topsymo

Sorry to confuse. If you go back to the start of this thread you will see that it was concerned people starting out with BC and concerned with SE's including Hair Loss.

Over the months time has moved on and those at the beginning have stayed in touch as they have gone through all their treatment.

We are a very friendly bunch and if you have joined us looking for help and advice on hair loss or any other situation involved in BC treatment just ask and we will do our best to help, or just join in because you can-welcome

Take Care

Eileen

topsymo
Member

Re: hair loss???

I am wondering why this thread is called hair loss???- am I missing something here....?

AndieT
Member

Re: hair loss???

Hi Caron

My cat who died was actually a pedigree British Shorthair Bi Colour called officially Tuftibuton Casual Colin, known by us just as Colin.

Some years back I used to breed and show Pedigree cats. He was the only male that I ever kept from all the kittens I bred. In his prime he was HUGE. He was 17 years old and had a good life. His friend Paddi(Tuftibuton Paddipaws)is actually now 18 and still going strong.

Now I only have 4 cats.

Take Care

Eileen

caron_caron
Member

Re: hair loss???

yay your all coming back in droves!! hahaha

Kate I hope your new chic look will cheer you up?
you must get as much help for your depression though. hugs xxxx

Eileen am so so sorry to hear of your moggy you must be really upset what was your moggy called??
And I never fell in the snow there was none I ust fell even worse cos there was no snow! bruises almost gone now.

When id your uncle going back V??

Completed mmy jury service now really enjoyed it.
Where is Gail and Jo ?
much love to all xxxxxxxxxxxx

brightlight28
Member

Re: hair loss???

Eileen I'm so pleased to see your post. I was really worried about you and Peter.

I've not started the counselling yet - only been for the assessment session. It begins next week and I'll let you know how I get on.

I'm tired tonight as have spent the day with my uncle and find it tiring trying keep up with him on our days out in London as he has so much energy. Today was the National Army Museum on the Chelsea Embankment which I actually preferred to the Imperial War Museum.

I hope you are recovered from your fall Caron and that you are enjoying week two of Jury Service.

Nice to read from you Kathy - good luck with the hair cut. I am still not happy with my hair but plan to sort it out after my reconstructive surgery.

Hope everyone else is okay.

Victoria x

AndieT
Member

Re: hair loss???

Hi Girls

Nice to see you posting again, I was beginning to think we had all hibernated.

I am still having a daily visit from the hospital nurses to repack and dress my open wound, that's 3 weeks after the op and they tell me this could go on for weeks yet. Unfortunately the nusres have visited me at home for as long as they are allowed to and now I must make arrangements to have it done by the practice nurse at my doctors surgery. That would be OK if I was allowed to make appointments in advance for the weeks ahead. I must phone on friday afternoon to book appointments for 1 week! Also while the nurses have visited they have supplied all the dressings, gels and sterile packs that I have needed. Now I must get a prescription from the doctor and collect it all from the chemist to take with me.

Peter is still off work. The GP refuses to let him go back to work until the ongoing investigations have been completed to try and find the cause of his fit. He is not allowed a referal to a neurologist until an MRI has been done, he is severely claustrophobic and can't get into the MRI machine. Catch22. We have had to pay privately for him to go to a centre in London where they have an upright MRI machine where you just sit between the plates. Now we have the results (All clear) the GP has sent off for him to be seen back at the hopital by the neurology department. It is all frustrating, phoning gets us nowhere we must just wait for the appointment date to arrive.

I hope your bruises are healing OK Caron, this snow has a lot to answer for. What does Betty make of her first snow?. Unfortunately one of my older cats died at the weekend. He was 17 years old and he just curled up and went to sleep, never to wake up again.

Kathy I reached a point that I was embarrassed at the number of times I was reduced to tears that last year I went for counselling. It really helped, in fact with the uncertainty with Peter and myself at the moment I have considered going back. I am not proud I will accept any help I am offered,I am past caring who knows that I am struggling.

V how did your counselling go?. When will you get a date for your next surgery and will you have to be off work for long. So many questions, sorry.

Jo I find it hard reading on the site when people have problems-it must be even harder when they are real people you know and care about.

Take Care all of you, please carry on posting

Eileen

katemate
Member

Re: hair loss???

It's not just you and Victoria, Caron.
I wrote a long piece earlier today and then lost it!!! So exasperating.
Happy belated New Year to all. I have been separated from my laptop as I should have taken it to Somerset with me. Got stuck by snow there and missed my oncologist appointment. Eventually got back here and the snow hit again and had to cancel my dental appointment.

I'm so sorry Andie to hear of yours and Peters problems and hope you are well on your way to recovery.

I am not feeling too good at the moment. I have suffered with depression for many years and I'm going through a bad patch. I ahve an appointment with the "head woman" on Monday. Isaw gp today and he is going to try to bring it forward, as the tears are flowing too readily. I also have sleep problems, which do not help my mental state.

I don't envy you jury service,Caron. I've also done it twice and found it such a huge responsibility, it made me feel quite ill. After the last one my gp said I shouldn't do it again as it was compromising my health.

I'm having 2 or 3 weeks eating carefully, Victoria. I know Ive put on weight and I hate that roll of fat around my middle. It has been ther afew years now and it has to go. But the surgeon has told me now is not the time to lose weight, as I'm having reconstruction in June. But a few pounds won't hurt.

I'm off to Guy's next week. They have agreed to see me over the hereditary gene issue. There has been quite a lot of cancerin my family and I have concerns for my daughter and granddaughters.

Tomorrow is a big day for me! My first haircut in 18 months. The curl is still strong but it is beginning to go straight at the roots. I just hope it helps to pull me out of this depressive state.

Sorry to whinge, especially as I know we all go through bad times.

On alighter note, are we still on for the6th feb!

Love to you all Kathy

caron_caron
Member

Re: hair loss???

I can't believe noone has written!
I thought I would be catching up with you all.

Well as V said I have been on jury service I would not like to say openly what the case was about just in case but it was a very serious case (not murder) and was very intreasting to work on, I must admit I knew right away who was telling the truth and who was fibbing!!
It has been a very long case as most of the defendants were polish and not english so they had to translate every word.
I am still on jury service so tomorrow I may start a new case,all depends if I get picked or not.

I had a really bad fall last Thursday, the path was tarmac and obviously so was the road I wasn't looking where I was going and thought I was treading on the path but my foot went further so making me fall arse over tits! (or should that be tit? lol).
I am ok now mainly bruises isnt it nice how you fall in the middle of the road and not one person helps you (thats british for you!).
Please all write summats soon it will be boring if its just me & V !!
xxxxxxxxxxxxxxxxxxxx caron xxxxxxxxxxxxxxxxxxxxxx

brightlight28
Member

Re: hair loss???

Hello ladies,

Eileen I hope you and Peter are recovering now - I still can't believe the awful time you've both been having. Lets hope this will be the end of the seroma problem.

Jo I hope things are not too difficult for you supporting your friends in the clinic. I can well believe the real-life contact with women who have gone on to develop secondaries must be so difficult. We all fear it - and yet cannot imagine how brave people are when they get the diagnosis. I think about them and Shelly and just hope..

Caron, my mind is like a sieve - so nothing new there! Completely forgot you were on jury service when I tried to call. Hope it is an interesting case. My mammogram is 1st Feb and I'm beginning to panic (quietly) but this is something we all have to get through.

Kathy, I too am tired for much of the time and worry a little as other women in my clinic who were diagnosed the same time as me seem almost back to normal. Hoping your energy levels pick-up.

Gail - hoping you are okay and having a good new year with Kai.

I have my uncle Jack staying at the moment - he's my father's twin brother and lives in Canada. He's an absolute bundle of energy and I feel quite tired after he's dragged me around London for a day. This week we went off to an exhibition on the Aztecs at the British Museum. It was specifically about Moctezuma the second who was their last elected leader. He didn't seem to do much of any great interest except make lots human sacrifices and create lots of wars. What was quite striking though that considering he died in 1520 there are so many artifcats remaining that had been his personal belongings including stone boxes and tablets. They definitely belonged to him as they bore his gylph: each of the Aztec rulers had their own design. Moctezuma or Montezuma as he's better known in English died under mysterious circumstances - possibly at the hands of the Spanish who had entered Mexica in order to convert the population to Christianity.

Uncle J loves London cafes - and really wanted to have a traditional fish and chip shop meal this week. This meant I had to break the new diet for one meal. I'd not been for fish, chips and mushy peas for ages and hadn't realised what I was missing! My latest diet strategy by the way is to buy the ready meals in the Sainsburys basic range. For some reason they taste better than most calorie controlled meals but have very few calories themselves. On average around 250. So what I'm doing is having Oats so simple for breakfast, one of the Sainsburys' meals for lunch and dinner, and then a small tin of fruit salad and dried apricots for snacks. I am managing to stick to it and don't feel hungry but so far not showing too much difference on the scales! If I lose the weight - I may celebrate by making those coconut tarts you describe Caron.

Hoping everyone is okay - and looking forward to our February meet-up.

Love Victoria xxx

caron_caron
Member

Re: hair loss???

Hello ladies,HAPPY NEWYEAR...........
doesnt anyone like my Betty pic?? (she got dressed up specially).

Eileen,I'm so sorry for you and Peter the troubles you have add over Christmas.
Your seroma I was told that they don't like to keep draining it as everytime they do it can introduce bacteria I suspect this is whats happened to you? Is it all gone now? I hope so ?
Peter had a funny turn before didnt he, was it the same syptoms I cant see without going back and finding your post.

The kids party was a roaring success as ever crickey my pickled onions are hot!! and the coconut tarts V were lovely I got the recipe online cos I couldnt find mine but they were even better!!

Jordan is in the process of moving out starting out in his little flat (boo hoo their leaving me).

Mammagram I have just heard from my BCN and she said she can't ask anyone other than the person (my surgeon) who told me my first one was next September,so she asked the girls who do them and they said yes I should have had one last November (great only my life here!)so I am getting sent a appointment now for Feb.
I have just had my 6th herceptin gorr was I cheesed off or what they put the cannula in after 1 hour 30 minutes my bag ran out nurse comes and says " is this your herceptin"? I said " I hope so Ive been sat here for 1.1/2 hours, then she said " well why hasnt it got a label on" I said " I don't know,hang on who did my check"? then the penny dropped !! BLOODY SALINE !!! sat there for 4 hours that day.!

Jo my Owen was praying ohh so hard (obviously not hard enough) that his school would be shut but his was more or less the only one open in Grimsby/Cleethorpes/Immingham and all the little villages,he was so mad lol.

If it doesnt get better then Steve will not be able to work next week as its all in valleys etc and they get snow loads worse than here and it's really bad here,so he will have to have next week off.
Monday I start my jury service (2nd time!)

I have had to put off my second swine flu jab as I am busy the next 2 weeks.

We had a really nice christmas much much much better than last year we invite Jamie and Emmy ( DIL ) and the dinner was one of the best I have ever made,put it this way Jamie said how nie it was ! lol.

love caronxxxxxxx

mjjje
Member

Re: hair loss???

Hi Everyone

Just to say hope you are all surviving the Artic conditions! Must say day 3 of kids off school and i'm starting to get a bit fed up with it, beautiful as it may be!

Andy, hope you're feeling better and that Peter is on the mend to!

Thinking of you all girls, wrap up warm and drink plenty of mulled wine with an extra splash of brandy, it really works, i'm the only one in the household who's not yet had a cold!!! (maybe it was flu/swine flu jab???)

Jo XX

brightlight28
Member

Re: hair loss???

Eileen,

So very sorry indeed to read about your troubles and those of Peter. I hope at the very least this will mean your seroma is dealt with once and for all and the rest of this year will be brilliant. Id there's anything I can do plese just ask.

I'll write with an updated on my low key last couple of weeks tomorrow as feeling very tired tonight.

Hope everyone else is okay.

Victoria x

mjjje
Member

Re: hair loss???

Eileen, you poor sole. Best wishes to both you and Peter, what a rotten time you are having and now is supposed to be a chance to wipe the slate clean and put all the troubles of last year behind us all! Get well soon both of you!

Happy New Year to everyone else, Lets hope it's a better one for each and every one of us!

Jo XX

AndieT
Member

Re: hair loss???

Hi

I just wanted to wish all the wonderful people I have met both in person and via cyber space over the last year a Happy New Year.

Here on the Hair loss thread we have all had a really tough 2009 and I can only hope that 2010 is better.

I actually ended 2090 back in the hospital where I had my original MX having a small but emergency operation. I had been really poorly over christmas where the persistant seroma had become infected, but as far as I understood the antibiotics I had been given should have been dealing with it and the way I was feeling was down to the strong SE's of the tablets. On new years eve I saw my consultaant in clinic who took one look at my poor swollen non breast area and insisted I was admitted immediately and operated on that night to clean out all the pus and gunge from the infected area. Not quite how I expected to see in 2010 from a hospital ward.

I am now back home having a nurse come in every day to clean out what is actually quite a large hole. They opened up a small area of the MX scar but because of the infection cannot stitch it back.It has to be cleaned and packed daily and I am told it will eventually heal from the inside out, but it will probably take several weeks.

Just to add to the traumas of 2090, 10 days before Christmas Peter had a fit which, as he has never had anything like that before, meant a 999 call and a blue light trip to A & E. He is OK and they are investigating what, if anything, caused it, But the law of the land states that if you have a fit you cannot drive for 12 months. We are now in a position that we have 2 cars and 2 motorbikes but I am the only legal driver. He is distraught because it may mean he has to leave work because of the problems of getting to his office and he is a very independant sole who will find it very hard to rely on other people.

Lets hope that 2010 is better!!

Take Care

Eileen

katemate
Member

Re: hair loss???

Happy Christmas everyone!

Also a happy 1st birthday to Betty!

Victoria, I know the hotel you are talking about in Sudbury. It certainly is very pretty. I recall seeing the mummified cat encased in the floor. It is many years since we went there.

Spain was considerably warmer than here. Unfortunately I wasn't particularly feeling too good. Our return flight was cancelled, which meant Ihave been busy trying to fit everything in that Christmas requires. My energy levels are very depleted and I seem to tire easily still,

We're spending today with friends, so hopefully it will be relaxing.
I spent yesterday preparing food, cooking hams, making gravy etc.

We're calling in to see my grandchildren en route. Last year they had a very bleak Christmas as son in law was in hospital and my daughter had to cope with it all on her own. I had finished chemo a few days before and I was unable to help her, and was stuck in Somerset. So we're leaving them in peace to enjoy a normal Christmas with their children. Although we're spending Boxing Day with them.
My youngest son will also be putting in an appearance then.

My eldest son lives in Spain, so we spent the week with him. The only one I haven't seen is in Somerset and weather permitting I'm hoping to go next week.

Enjoy the day everyone and try not to work too hard. My thoughts also are for Shelly and my friend Diane. May they shine forever brightly in our hearts.

Love to you all, Kate

brightlight28
Member

Re: hair loss???

Happy Christmas my special ladies - we have come so far this last year. Meeting you has been the best thing that has come out of having this disease.

I'm sorry Jo that the women in your group are not doing so well, and can imagine it must make you feel really nervous yourself. Hope you can enjoy Eurodisney.

I too remember Shelly saying about the number of sleeps until Christmas day and her holiday to Egypt. So very sad. Sending Simon and the boys good thoughts - if you are reading this strand.

Caron - my hair is also resembling the 100 volts look first thing in the morning. It is growing normally but has been ruined by the treatment. Still should be greatful I'm still here.

Andie - you look wonderful in your clown outfit.

Gail hope you enjoy your break in Norfolk for New Year.

Kate hope you enjoy Spain.

I've been quite busy and rather tired the last week or so. The weather has made things difficult, and the pavements were still treacherous here until yesterday after all the snow.

Earlier this week I visited my father in hospital: St Georges, in Tooting so not far from me. He was having scheduled glucose tolerance tests which are usual after the removal of part or all of the pituitary gland. As it was a fasting test he couldn't wait to consume the chocolate biscuits and lucozade which the nurse gave him in order to bring his sugar levels up to normal again once the tests were completed. My mother is a diabetic and very health conscious, and keeps them both on a strict healthy diet, so being handed a whole packet of chocolate biscuits gave my father the very rare and legitimate chance to indulge in food he is usually prevented from buying or going anywhere near in other people's houses. After the tests we all went for lunch in Battersea and the first flakes of snow were beginning to fall. I felt sorry for the market traders, especially the two men selling Christmas trees as it really was unbearably cold and they weren't even wearing gloves. The small restaurants and pubs were overflowing with Christmas parties so we ended up going to a large Italian place that I've walked past many times, and always meant to try out. The food was very good and it was lovely and warm in the restaurant - the kind of place that is a wrench to leave on a cold dark afternoon in mid-winter! I chose the duck with roasted vegetables and shared a portion of tiramisu with my mother, whilst my father opted for a steak dish and a whole slice of chocolate fudge cake. Then after seeing my parents safely on to the bus to Richmond I went on a book buying spree in Waterstones for OH. As we have been together so much of the time recently I had not managed to buy him anything for Christmas. All is okay now though as I found three books I think he will like: one about a journey on the Patagonian Express through South America, another on the history of quantum physics, and a final one on lost railway lines in England. On the way home the snow started to fall with a vengeance and quickly deteriorated into blizzard-like conditions. In fact it fell so quickly that the cars couldn't cope which resulted in a long line of stationary vehicles on the road. In the end we had to abandon the bus and I walked the rest of the journey home. It was quite magical in a way as there was that kind of muffled silence and glaring whiteness that seem to follow after a heavy snow fall. As I traced a particular set of footprints of someone who had gone before me up the steep hill, I thought for a moment of King Wenceslas. I also thought of my uncle and aunt who run a cross-country ski club in Montreal and who are always trying to persuade me to take up the pursuit! Wish now I had listened to them, skis would have come in useful!

When I was waiting for an underground train the other day there was a large poster with a quote from the German playwright Goethe printed on it: "Nothing is worth more than this day. You cannot relive yesterday. Tomorrow is still beyond your reach". Sometimes we read things or see things, even small things that for some reason lodge in the mind. In this case Goethe's words seemed to fit perfectly with my mantra about making the most of each day, which I have endeavoured to stick to post diagnosis. And on the disease front I was pleased today that my first counselling appointment has come through for the beginning of January. I asked at the clinic to see someone because I'm finding living with the fear of a recurrence quite unbearable at times. I spokes to the counsellor and she seems really nice and approachable, so I do feel I will be able to talk to her about things.

We are spending Christmas in Suffolk and arrived this afternoon in Sudbury. The hotel is lovely with its own duck pond and working water-wheel. However, we have learned that it is meant to be haunted and indeed is a stopping off point on ghost hunting holidays in the region - so I'm wondering now what we have let ourselves in for! Another peculiarity is the hotel's mummified cat on display behind glass in the floor in the reception area. It is meant to guard against bad luck, and apparently when the owners tried to remove it during the 1970s various bad things happened so they restored the cat and everything returned to normal!

Caron, those coconut tarts sound wonderful. Could you let me have the recipe some time. Give Betty and Marble a hug from me.

Victoria xxx

caron_caron
Member

Re: hair loss???

Thankyou all for answering my questions, I have no hair under arm pits at all,but I was told I had the strongest chemo I could have had as my tumor was huge.

she if I don't have a mammo till next september then it would be nearly 2 years from dx.
BCN is ringing me back today.

DO YOU LIKE CHRISTMAS BETTY????
It was her birthday yesterday and she had a little cake with 1 candle!

We went shopping yesterday to get some makeup as well as food well we got the food and forgot the makeup! so we ended up going back at 1230 am we had to ask for assistance cos all the makeup was locked up.
So we waited ages we got it in the end went to a self service check out I was scanning the makeup and a operator was hovering over me (my eyes are too close together)so she had to keep putting her card into the scan cos the weigh bit wouldn't recognise the weight of small items anyway she went off I clicked pay now BLOODY Steve went and pressed own bags used I said why did you do that? (we never) and machine said WAIT FOR ASSISTANCE (great!) I could have killed him! She said " well you haven't used your own bags have you"?
I felt like a shop lifter!!!

well lots to do today coconut tarts to make for kids party they have upstairs

ALL HAVE A FAB CHRISTMAS AND NEW YEAR .........love Caron xxxx

mjjje
Member

Re: hair loss???

Yeah Caron, definitely chase, had my 1st mamo back in septem ber, one year after dx! Also i have to have second swine vac in Jan, 4 weeks after last one! With ref to shaving, have to say back to normal in all depts, even under dodgy armpit!!!
Funnily enough was only saying to kids today, 1 more sleep to go! Bless her I think of Shelly so often and have recently heard from Simon, he seems to be coping really well, but obviously missing her dreadfully.
I think of you all daily but really don’t feel up to posting often, really going through it at the moment with two of my girl friends from the support group so finding it impossible to feel positive and don’t really feel it’s right to inflict it on all you girls. We’re all trying to move on in our own way and I really hope that you are all managing better than me at the moment!
Gail, you put it so well in your latest message!
Caron, much love to you and your family and here’s hoping that despite Marc’s passing, you manage to try and enjoy part of Christmas.
I don’t suppose I’ll get another chance to write now as life is manic over next week as we’re taking kids to Euro Disney for New year to make up for the last shitty year!! so here’s wishing you all love and best wishes and I’m praying that everyone has a wonderful Christmas and puts the last one well behind you! I’ll take this opportunity to also wish you a happy, peaceful but above all healthy new year to!
Look forward to catching up in feb!
Jo X

notyetinthebox
Member

Re: hair loss???

Hiya Caron - yes, definitely another mammogram after only ONE year - chase them up!

And yes, only have to shave one armpit - nothing there on the node clearance side.

MERRY CHRISTMAS!!! xxxJacqxxx

Guest user
Not applicable

Re: hair loss???

hi caron,I had my first mamograme one year after treatment had finished.It may of course be different in other areas.Hope this helps. Best wishes mel xxx

caron_caron
Member

Re: hair loss???

hahaha I always knew I would be famous! (pic)

caron_caron
Member

Re: hair loss???

thankyou all for your thoughts over Marc,don't want to dwell on it as it's nearly crimbo and a good posibility it will be white!!

I have done most my crissie shopping maybe a few bits and bobs to get and the big food shop to do.

Cass this time last year I had just had my first EC (horrid horrid stuff that!).
Can ppl answer this question pls...
How is everyones hair now? ie do you have to shave under your arms?
Just asking cos I don't have to shave both arms.
My hair every morning looks like I have had a 10000 volts running through it every night!
I have only had to shave my legs twice since chemo which is now 7 months ago.

My friend Christine has had her mx now and I went to see her last Saturday, she was very pleased to see me she is recovering well (she looks better than I did at that time!).

Well we had some wallpaper for the kitchen well it did have artex on the walls (bloody stuff who invented it? they need a good slapping!) so it's took ages and ages to get it off the walls but then it was getting too near xmas to do it but I finally got round to doing it yesterday (can't move now I might add!).

Ooh yes I had some spotting last week I am wondering if my periods will return?
I was sure it didn't matter if they did for me as I am only ( I say ONLY!)her2+ but Steve wanted to make sure as we don't want to take any risks so I asked my nurse and I am right it doesn't matter to me.

Now for another question can ALL ppl who read this answer if it is relevent (ie has been over or abouts 1 year from dx)
Is it the rule that you have your first mammagram after 1 year from dx???

My BCN told me I needed one as it was 1 year (nov) but when I saw surgeon he said my first mammagram will be next September, so now I don't know who is right? if she (bcn) I need to be chasing it up.

Swine Flu jab first I wasn't getting one as I wasn't in criteria (yeah right, nice try!) then I got told I could have one (nice of them to let me have one)when I had it I was asked did I get told I needed a second vaccination I said all I know is I need one,she said she might be contacting me again about the second dose (I only heard of ppl having one)anyway it appears we do need 2 so everyone who has had chemo you need to follow it up if you haven't had a second dose.

V I am not certain if it has to be a certain time scale or not, I was told it was 3 weeks though.

I am still having lots of trouble sleeping (actually that's a lie it's waking up I am having trouble with!) I could sleep and sleep and sleep if left alone I was told it's still from the chemo and could be 18 months after finishing it.

This time last year I remember Shelly saying 5 more sleeps to go 4 more sleeps to go etc etc I asked what was she on about and she said she is pissing her pants to me (makes me smile that).
love caron xxx

Gemdancer
Member

Re: hair loss???

Hello all,

Just wanted to wish you all a very Happy Christmas! I don't have your addresses so haven't sent any cards...although always so disorganised I might not have sent them anyway. kai and I make them and don't send them!!

Saw Kai as a king in nativity last week. The tears flowed. This time last year, I had written myself off. I'm so emotional this year. I thank the lord and the medical profession that I am here. This time last year...sick for Christmas...in hospital for New Year!! Hoping not to repeat that this time!

We are staying home for Christmas and off to Norfolk for New Year. the house has more fairy lights than one girl should own! But... I am just giving in to my inner sparkle.

Steve off work now, as took him 6 hrs to get home last night (a 45 min journey). We don't want him stuck anywhere as he is cooking Christmas Day!!

I think about you all often. I know we are having up and down times and there has been some very sad news this year and more recently. But I hope there will be a moment for you to find some peace over Christmas... to feel good that we are still here! We may look different ... we may have bits missing...we may have poodle hair... we may not be able to lift our arms... we may have raging hormones, headaches, back aches etc etc. (Or is that just me??) But we are still us. Grab your loved ones and give them a big hug and lots of kisses. Grab strangers if you like...just don't get arrested!

Thank you my lovely girls for being here. Looking forward to seeing you all very soon.

Many Christmas kisses to you all,

Love,
Gailxxxxxxxxxxxxxxxxxx

cass141
Member

Re: hair loss???

Eileen,

What a fab pic! It made me smile, so glad that all is well with you. What a great fund-raising amount, really impressive. I too have been thinking a lot about where I was this time last year - just about to start 6 chemos and absolutely terrified. This year I'm back at work and have regained a certain amount of normality. Oh, and the hair growing back has been soooooo exciting! Tears never seem to be far away though but I count my blessings every day. Christmas is a really emotional time anyway but it is nice to be able to get into the spirit of Christmas and actually look forward to it.

I wish you, and the family, and all the lovely ladies on this thread a good christmas with your families - and who knows it could even be a white one! That would be just great.

love Pat x

AndieT
Member

Re: hair loss???

Hi

With Christmas approaching I thought you could do with a laugh, or a smile at least. Hence the picture of me dressed as a clown. It was taken a few years ago when OH and I were heavily involved in a fund raiser for our local hospice.The community came together and we raised over £25,000.

I hope you are all keeping well and looking forward to the Christmas and New Year festivities. This time last year I was on Tax, just started Herceptin, had no hair and was suffering from a cold which caused me problems right through the holiday season. In fact I had no reason to think I would still be here a year on.But here I am with no ongoing appointments for the next 3 months, hair regrown, Herceptin finished and next years holiday booked.

Really looking forward to Feb. to meet up again.
Take Care

Andie

katemate
Member

Re: hair loss???

Hi girls,

Just a quickie. Very sudden decision to go to Spain for a week. We're
going tomorrow morning and won't be back until Tuesday. In case I don't get round to my card writing today I'd like to wish you all and your families a very happy Christmas. I'm sure we're all hoping for a better year next year.
Love to you all,
Kathy

Gemdancer
Member

Re: hair loss???

Caron,
So so sorry to hear about Marc. So tragic. Sending lots of love.
Gxxxxxxx

mjjje
Member

Re: hair loss???

Caron, thinking of you and your family and i'm so sorry for you all for your loss particularly as it is so close to Christmas! It was supposed to be a good one for us all this year?? Life is so cruel!

Lots of Love

Jo XXXX

AndieT
Member

Re: hair loss???

Caron

I so wish, as friends ,we lived closer to be there when you need a big hug.

Marc will suffer no more. You and your family must hang on to that.

Take care, phone if you need a chat

Eileen

katemate
Member

Re: hair loss???

Caron,

I'm sorry to hear your sad news.

My condolences to you and your family.

Kathy

brightlight28
Member

Re: hair loss???

Caron, we've spoken and you know I'm thinking of you lots. At least Marc's not suffering anymore, that's the best I suppose you can think about it. And hoping the herceptin tiredness wears off soon.
Victoria xxxx

notyetinthebox
Member

Re: hair loss???

Oh, Caron love .... so, so sorry to hear your sad news. How devastated you must all be.

I always pick up on your posts 'cos you seem to have a similar sense of humour to mine, but not tonight sweetie.

Hope you all manage to find some peace, like Marc has now.

Take care lovey, xxxJacqxxx.

caron_caron
Member

Re: hair loss???

No won't be a good christmas again, Marc has died on 4th of phumonia my sister said she knew that would take him he's had it so many times.
It was cos of the tumor pressing on his heart though,Cheryl held him as he died.
One thing at least the poor sod will suffer no more,he's had such a tragic life.

My mother isn't one for tact never has been she's never been very maternal and thats why Cheryl can't understand her.
love Caron x

brightlight28
Member

Re: hair loss???

Hello ladies,
I meant to write yesterday but was feeling the effects of the swine flu jab: aches, pains and general lethargy. I set off for work in the morning but in the end turned back as I thought: I’m not feeling well and I need to put my health first. The work life balance thing can be difficult at times, but reading posts on here, particularly those from Debsincornwall remind me that it is important to fill our lives with good things and good thoughts as we just never know what happen somewhere down the line. All too often I find the kind of wisdom Debs imparts is learned to late; and wouldn’t it be wonderful if we were all as wise as those who have already lived through a particular experience. On a lesser scale there is the hair loss issue. So many ladies lose their hair on chemo because they do not know about the cold cap, or do not think it will work. But having lived through the experience and used the cap, I would do so again, because it removes at least one unpleasant occurrence that happens with this disease.

Time seems to have flown by this week and my travels from last week seem an almost distant memory. The last six weeks before the end of the year are the busiest times at work as it seems everybody is trying to cram as much into the diaries as possible, in the fear perhaps, if we don’t do something this year, it may never happen. It is about immediacy and the present. The whole cancer diagnosis and living in the knowledge of the disease certainly makes me think far more about achieving those things that matter, but now I look at some of the meetings and think: I’m not sure what the purpose is here; or where it lead to. The disease seems to sharpen the mind, once the fog of chemo has lifted.

I have not been coping too well on the hormone therapy and now take three drugs for this, making a grand total of five different drugs if I include the two for asthma. I think I escaped the hot flushes and the extreme temperature changes on the chemo and now I see what you all mean. The evening primrose oil produced a nil effect so now I’m on these sinister looking tiny blue pills called Clonadine. The list of side effects is scary but I will stop if I start experiencing: hallucinations, extreme depression or hair loss. In the meantime I hope they alleviate the temperature issue, as it is making dressing in the mornings a nightmare. Too many clothes and I fear I will melt and too few and I wonder whether I will be heading for hypothermia.

On the travels last week: I enjoyed part of a morning in Manchester before a meeting. The city has gone through a sympathetic regeneration programme, and there are still handsome terracotta buildings as well as some wonderful new ones. And it is good to see the trams running again through the centre. I went to Primark which is the largest branch I know of in the country. I tend not to buy the clothes but I do love the accessories, sparkly tights, scarves and gloves. I bought a fluffy pink scarf for only £2.50 and some gold lurex tights for just £6! We also go to the shoe department to look at the outrageous designs, and not quite sure who could ever wear the six inch heals and platforms almost to match. OH encouraged me to try some on as we were both curious as to whether they actually could go on to a human foot. And my conclusion was: I'm not sure they could. But of course some women must like them or Primark would not sell them.

Last Thursday I travelled across from Manchester to Newcastle for a "Narrowing the gaps through leadership conference" organised by a local authority. The event was inspiring and the authority managed to attract almost every headteacher. I do like to get out and visit teachers and schools where I can, as it makes my work seem more real somehow. In the evening we went out to The Gate which is a big shopping complex that includes a fourteen screen cinema. We went to see Paranormal Activity which was a big hit in the US grossing billions of dollars and was made for just 11,000. The principle was scary but I was less convinced by the execution of it. I'd recommend it though to someone who enjoys films of this kind. Afterwards we went out for a meal to an American diner where they played hits from the 1950s including lots of Christmas tracks. I enjoyed the meal but for most of it was going through a 'cold spell' so had to keep my coat, scarf and gloves on which I'm sure the other diners thought was a tad eccentric. On the Saturday morning I went to look at the stalls of the German Christmas market in the centre of Newcastle on the corner of Grainger Street, near the column and close to where the lone piper stands. I bought two bead bracelets from the market that look like they are made from liquorice allsorts. One was for me and the other is for my friend C.

I have watched a few programmes on television this week which I've enjoyed. I tend to have the television on in the background if I'm working - which has been a lot this week especially when I was writing the newsletter. I really liked the Delia Smith Christmas programme where Delia revisited her favourite seasonal recipes from her iconic series which must have been shown about 20 years ago now. I am planning on making the Caribbean Christmas cake which includes tropical fruit, though may not add the marzipan or icing.

And I was gripped by a programme on BBC4 about ghost stories on tv which showed clips from various dramas, documentaries and films that have been shown on the channel over the years. They showed footage from Ghostwatch - not sure if you remember this which was a mocumentry featuring Michael Parkinson, Sarah Green and a family in a haunted house in Enfield. I won't write too much about this - but you might want to look it up on wikipedia which gives an interesting account.

Today I am going out to look for Christmas cheer in the way of shopping and decorating the tree. I am grateful that I can do these this whilst I know others are not so lucky.

Caron I am hoping everything is okay with you and am worried about you. Derek Accorah featured in the BBC4 programme about ghosts. I really want to come along to the next one you got to where he’s present.

Thinking of you all and hoping that you can enjoy Christmas a bit more this year, as last year I think for all of us was all rather a nightmare.

How are you coping Jo on the Xoladex: here I am just now with the fan on!
Gail I imagine you are being taken up with all things Kai and Christmas
Andie wish I had your card making skills. They’d come in handy just now. And I hope the new approach to the seroma works. I'm on that three month wait now too!
Kate enjoy your curls, from what I’ve read they eventually grow out.

Lots of love

Victoria xxxx
Our February meeting is something really lovely to look forward to in the new year!

AndieT
Member

Re: hair loss???

Hi Girls

Thought you would be interested to hear my surgeons latest opinion on my never ending seroma.

He wants it drained again under ultra sound and then a tight dressing attached to try and stop the fluid refilling the cavity. When I asked if the final surgery option was always successful he replied with perfect honesty ' No-it really will be a case of do it and pray!'

I have been in clinic every wedesday afternoon for the last 4 weeks, it begins to feel as if this problem will be with me forever.

Good news is the oncologist doen't want to see me now for 3 months, and in fact has said that her part of my treatment is done, only get in touch if I suspect a further problem.

Take Care

Eileen

AndieT
Member

Re: hair loss???

Caron

Life is tough sometimes. I was so sad to hear the latest news of Marc. I sometimes think that family are the hardest people to deal with and yours sound like no exception. Sending you all my love

Take Care

Eileen

katemate
Member

Re: hair loss???

Caron,

So so sad to hear about Marc. I know how fond of him you are. It is enough for you to go through, without family making matters worse and creating more problems. I don't think family are the most sensitive at times, mine have given me a hard time in the past. My thoughts are with you right now.
Kathy

brightlight28
Member

Re: hair loss???

Caron,

Going to write properly tomorrow and we've spoken. I am so sorry about Marc, just hoping he doesn't suffer too much. Sending you both good thoughts.

Victoria xx

caron_caron
Member

Re: hair loss???

BAD BAD BAD NEWS

You all remember my nephew Marc with the tumor (and cerebal palsy)
He ha been in and out of hospital since then my sister Cheryl got some antibiotics for him last week as his breathing was bad,he was getting worse the next day so he was admitted to hospital but they have said it's not a infection but it's his heart.
He is on oxygen and different meds but none of them have worked so they gave him one more lot of medicine and have said if this doesn't work then there is no more they can do for him.

My sister doesn't talk to my mam my auntie doesn't talk to my mam so my sister won't let my mam see Marc,I have been trying to get cheryl to let mam see him anyway on Sunday Cheryl said to me that I could tell mam that se can see Marc.
But there were some guidelines to follow ..
1) that my mam was not allowed to visit Marc while Cheryl was there.
2)that my mother was not to talk to others about her (cheryl).
3) my mam was allowed up to hospital after 4pm yesterday.
So I told my mam this (not about the conditions though) then my brother rung my mam telling her (mam) that Cheryl said my mam was not allowed up till 6pm now,then yet another message later on saying no visiting at all allowed on the Monday now.

Then at 6;20pm my mam got another message from cheryl via Paul my brother saying she said (cheryl) that they (mam & dad) can go up now till 8pm my mam said she couldnt get the bus and she hadn't had a wash to which Paul said your grandson is dying it doesn't matter if you haven't got a wash just go,to which she said BUSSES!! so he said TAXI,anyway my mam didn't go cos she said by the time she got there she would have to go cos it would be 8pm and cheryl would be back.
So my mam never went which really annoyed cheryl even more.

Anyway I spoke to Cheryl last night and she said are they coming up?
I said no,I said they are going first thing in the morning,cheryl said no there not,I am not giving them permission, so thats all I knew now all last night I was thinking about Marc how much suffering he has had all his life,I remember waking up from a dream about Marc.

I got my kids up this morning at 7 am I went back to bed and next time I looked at my watch it was 3;30pm (time for Owen to come home!)
My phone was ringing I picked it up it was my mother she said " can you do me a massive favour" I said "what" she said " well cheryl has rung and she said we can see Marc",so I said "good" then she said " there is no buses well the number 13 is not running and the 16 is only going from town (town is what we all the top town shops bus station etc) so I said " what do you want me to do"?
She bellowed "I'M JUST TELLING YOU" I never said anything she said " a taxi will be 1 hour" there has been loads of accidents" I said " why has it been icy"? She said and Jake is coming at 5pm (it was 4pm then) " will you ring Cheryl and tell her "
I said " why didn't you get the bus from town"?she shouted OH IT DOESN'T MATTER I WILL ASK PAUL" then she put the phone down on me!!

This is why evryone doesn't want anything to do with her! god she blows hot and cold constantly.

I had a message (text) from Cheryl it said Dale is coming home from the army (dale is marcs broter).
I rung Cheryl she said they have said she can take Marc home tomorrow , I said " oh good " but then I clicked on to what she meant to die,I was crying throughout this call, I had woken not 10 minutes since with one almighty headache (probably stress).

My mam rung again later and said " everything is sorted now" I said good,and I said please don't shout at me it's not my fault all this is happening, she said DON'T YOU START THAT AS WELL (she meant cos Cherylwon't talk to her), I said " I'm not you did shout at me she said well I was in a panic".

It's horrible watching Marc go through all this I have been crying since I have got up,I'm trying not to think about it but my mind wanders back to Marc.
So now it's just waiting for him to die aged just 22.
Marc has a special place in my heart he was the first born in our generation and he was also the first born after me & Cheryl had our stillborn baby boy's.

My friend Christine came yesterday she has just finished chemo and is due to have surgery next it was booked for 6th Dec but she has had a message saying her op has been put on hold as she said she needs a CT scan (she had one at beginning like all of us) as she had had a xray and so now they want her to have another CT scan,she's worried sick now.

Did I say I had been to see Derek Acorah?? yes I did he never came to us but after he signed for people who wanted his autograph and I had a photo done with him !! hehehe lol xx

katemate
Member

Re: hair loss???

Oh dear Eileen, you are having a rotten time. You're right, how our emotions swing with this. At the moment I'm in Somerset so being with the children takes my mind off things to an extent.
With regard to swine flu, my doctor told me exactly the same. However, last week, I received aletter from the surgery, saying due to my supressed immune system I was eligble.
John will also have it in the next wave in order to protect me.
So I'm booked in for the 7th Dec, also I've got another mri next week which involves a trip to Brighton.
Hope all are doing as well as possible under these awful circumstances.
Kathy

AndieT
Member

Re: hair loss???

Hi Girls

How quickly our emotions swing backwards and forwards. This time last week I was one happy chappie, after quite a fight the seroma had been drained, I was comfortable and the whole area was flatish and soft. Today the seroma is back with a vengance. If anything larger and harder than it was previously, and consequently very uncomfortable verging on painful.

Seromas seem to be no ones specialist subject, all the health professionals agree that what is happening to me is unusual but that doesn't help at all. The surgeon is beginning to make noises that point to further surgery. What that involves at the moment I have no idea. For the time being the BC has been dealt with, this is an ongoing inconvenience and although it affects my life enormously I really feel as if I have fallen through the cracks and there is no way out!

Sorry I'm moaning again.

By the way Caron my GP also says that I don't fit the criteria for the Swine flu jab, although to be honest I'm not sure that I want it anyway.

Take Care everyone

Eileen