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hair loss???

caron_caron
Member

Re: hair loss???

Eileen glad you got your seroma drained yours is unusual as it doesn't tend to stay that long mind you if they haven't drained it,Ive still got some in my back which BCN said if it's still there at Christmas they will see about draining it but she doesnt think there is much fluid there.
My reconstruction has settled as after radiotherapy you could see every pore but looks like it's gone back to normal skin.

Kate it will be cos of her heart condition it will tire her out alot more than the other childern better her having rest than putting her under stress.
Kate I would recommend having reconstruction any day I was trying to get my friend to have it as she is still young but she has decided against it, It is everyone's personal choice but I would hate for women not to have reconstruction just because of fear, as they might regret for the rest of their lives,but then again some women quite rightly decide they don't need reconstruction.

Gail I am wondering still about your back (not cos I think it's owt I am thinking about my own back) wondering if mine is from muscles? I know they go into spasm,I just wonder what can they do for that?
Cos my back has been like this for over 5 years now,but then I wonder is it arthritis cos now my hip has started to hurt when laid on too.
I have had my bone scan but I have heard nothing yet and I have had to have a blood test at the Dr.s at his request (the nurse made a right mess of my arm!! she put the tight sleeve thing on and it was really tight she then started to put the needle in but my arm started to go a nice shade of red then blue!! I don't mind having needles at all never have done but she was hurting a combination of the ligature being really tight and her moving the needle to try and scrape up my blood (which was not playing ball).

HAIR >>>>>>>>>>>>>>>>> what can I say? except I feel really stupid saying this but I don't see why V you have a problem with your hair?
I know it's not what it was but at least you have a head full
I don't at all and I have now been told that my eyebrows may never come back now as there is still no sign of them.

I dont have to shave my armpits no point with only 4 hairs!!
I do have hair other places if you get my drift but not like it was.

I have just had the anniversary V too last Sunday not a good place either at the mo.
You were right btw V I have my herceptin tomorrow.

Laryngospasms I have managed to stop 2 or 3 simply with a antacid It's deffo worry that causes most of them as I nearly had one when I went for my blood test.

SWINE FLU has anyone had the jab yet?? my Drs rung for Jamie to have one as he's got asthma I said I should be having one she said I don't fit the criteria!! hahaha she is obviously jesting!! what with all this and asthma I think she ought to recheck.

Betty's infection has gone now she wee'd in the house twice but vets said it was probably from the pain of the infection,she hasn't done it since and tonight was a total nightmare we have just had some security gates fitted anyway I went to take the bin round and Betty was coming with me but she went back in the house so I took the bin round went in my house the front way I said " wheres Betty"? I went to look for her I went out my gate to the alleyway there was Betty with her head and shoulders firmly stuck in the gates!!
I could have died! I shouted Owen I was thinking of ring firebrigade! that would have been good the gates have only been up a week!! lol I managed to get her out !!

DEREK ACORAH went to see him last Saturday he was really good and even after it finished he stayed there to sign for everyone who wanted his autograph (he must have been there hours).

VICTORIA can you remember the made batternburg you got me?
It is pinned to my yellow fleece and Betty thought she would see if it tasted as good as it looks ! hahaha.
Thats all my news for now hope you all have nice weeks, by the way what happened to Susanne????

I heard from Shelly's Simon the other day they havent been well with a virus but it was really nice to hear from him I like to think he is ok.
xxxxxxxxxxxxxxx caron xxxxxxxxxxxxxxxx

brightlight28
Member

Re: hair loss???

So glad the February date is good for you Gail - that means we will all be there (going to touch wood at this point - just hate the thought of tempting fate).

The craft fair sounded sparkly - I'm always attracted to glittery things, lace, beads etc. The new bag sounds really pretty.

This is my second of two busy weeks. Off to Manchester tomorrow but getting a sore throat so hope I'm not going down with something.

I had a hospital appointment yesterday to join a five year study of bc patients in terms of impact of diet and lifestyle on survival rates. When I was there I mentioned to the oncologist that I'm having a very hard time on the Zolodex in terms of hot flushes and the evening primrose doesn't seem to be working - so now have a prescription for drug to help with these.

Wishing everyone well.

Victoria xx

Gemdancer
Member

Re: hair loss???

Hi all,
Thanks for the birthday wishes. Had lovely time. We went out for dinner in Marlow at the Cheerful Soul (the owners won The Restaurant last year). It was fab and we stayed down the road in another fab pub! Went back to breast clinic and they still think lump is innocent. Took another needle thing and will get results next week, but they have assured me it is just fat necrosis. Relief! 3 hospital things this week: Echo, Herceptin and nutter doc, but all doable!

Went to Blenheim Craft show on Friday. It was so fab. So much glitter ... so little time. Had terrible experience... this little turquoise leather handbag (with purple heart lining!!) just jumped into my shopping bag and wouldn't get out... even when I tried to force it out with a very pretty little fused glass dish that I had to have!!! . Wicked little thing!!
The sun was shining and the views were beautiful too. Amazing what a couple of good test results can do to a person!

Good news Andie! What relief you must be feeling. Are you lighter?

Kate - these little ones are such a worry. Even though Kai went to nursery for longer days, he is totally knackered by school. Sometimes he passes out on the sofa! Hope she feels better soon! The MRI images were probably not clear enough. It is such a delicate procedure to get good results and they need exact images for your procedure!!

V - have put Feb date in diary. You are such a busy bee!

Missy Caron. These attacks sound scary scary. I hope they sort you out. Doc things my back thing is muscular... probably due to sitting on my arse for 5 months and then trying to move in the Summer!!!

Jo - hope you're all well

Thank you girls for being here. It's so hard all this crap and you all just understand the fear.

Really going to throw myself into Christmas now!!! last year was a nightmare. This year I am going to bathe in glitter!!

Love all,
Gxxxxxxxxxxxxxxxxxxxxx

brightlight28
Member

Re: hair loss???

Hello ladies,

That is good news Andie and nice to read from you Kate. As to the hair no advice to give really. I guess my hair is about the same length - mostly to the top of the shoulders and quite wavy. I cut my hair short in March - probably a bit longer than a posh, finished chemo end of May when it really started to grow again. I hate it though as the top part sticks up and is still quite dry from having used the cold cap. I am using a French shampoo and conditioner called Belle hair that is meant to cause hair to grow longer. Just been using a month - and it does seem to be growing a bit faster. Still cannot bear to see my hair on days where I want to look reasonable so pin it up and wear my wig. I am used to it - but may relent when I dare to colour it in a few months time. Just don't want to do that at the same time as using the special shampoo.

I am home now from the brief foray into the South West for a conference on technology. Yesterday though I had the day off and went to Bath stopping off at the Sally Lunn house. I do love sitting in the upstairs room there, aptly named the Jane Austen room and watching the street scene below through those small-paned windows. After sharing a Sally Lunn bun between us with ginger butter we went downstairs to visit the cellar kitchen which is now a tiny museum. I was fascinated by the section of old road lined with beautiful pinkish stalactites and stalagmites, that is visible from the cellar and which is below ground after the road levels were raised some two hundred years ago to guard against flooding.

In the afternoon we looked at the stalls in the indoor market and I bought various items from the haberdashery including thread to mend OH's shoes where the stitching is coming loose near the toe (but otherwise in perfect condition) as well as some lace and beads that I will use at some stage to personalise clothing. I do love to sew when I get the time! We were lucky with the weather, the sky was brilliant blue which emphasised the honey-colour of the Bath terraces and there was just enough chill in the air to make it feel seasonal. I have never visited Bath outside the summer months before and was quite taken by the Christmas window displays and bought a few items including a new bauble for the Christmas tree.

Just writing this now, it is hard to believe that Christmas is barely a month away. Tomorrow I am planning on assembling the tree after having located the base, baubles and lights last week (from different corners of the house!). Early I know, but to be honest this time last year I did not think I would be here.. so wanting a hasty start to the season - just in case.

Today the weather was terrible. We had set the morning aside to look at Bristol old town but did not want to do that in the rain. It was serendipitous then that just as we brought our suitcases down to reception that the rain stopped, so off we went to look at the town square, Corn Exchange and the St Nicholas Market where I bought yet more lace and some minature rose earrings for just a pound!

I was feeling really tired and after the market trip was really ready to go home. I did get my laptop out of my case to do some writing on the train but in the event never even got to raise the lid as I fell fast asleep - in fact OH had to wake me up when we reached Paddington. At least though I stayed awake for the taxi journey home back through London. I do like to see the London streets go by and the districts merge into other districts and areas.

It is another varied week for me - a rest tomorrow, hospital appointment on Monday at Guy's to complete baseline survey for the ten year study on lifestyle and breast cancer I'm enrolled in - followed by shopping for former partner in the afternoon, then Tuesday I've got the Dell people picking up my netbook (it has broken down - and I've bought a new laptop) then work, Manchester on Wednesday leaving to go across to Tyneside on Thursday - before heading home again on Saturday.

Hoping everyone is okay

Victoria x

katemate
Member

Re: hair loss???

Eileen,
So happy you are getting some relief from your problem and that someone has actually listened to you. Fingers crossed it doesn't build up again.

I feel sometimes it's all one long haul. You get one thing out of the way and something else happens. Last week I had a mri as part of my reconstruction journey. We had to go to Brighton for that, it went well, they wer on time and it was relatively short. I thought nothing more about it until I had a phone call yesterday saying they were recalling me as the images weren't clear. So, of course, my mind has gone into overdrive again. Has the cancer spread, are the blood vessels too narrow?
The last few days I'd actually been in a good place, now I've plunged back to where I was.

I'm off to Somerset tomorrow to take my mind off things. Charlotte started school in September, since which they have discovered she has a heart problem. Also they've cut her days at school as she is getting so tired. Is this because of her heart? I'm so worried about her health. It never rains but it pours!!!

So it's really good to hear some good news, Eileen.thanks for sharing it with us.

Our original 'hair loss' title is probably inappropriate now, and I just wonder how everybody is doing. Well my hair started growing back 11 months ago. Its thick, strong, dark brown, very little grey, about 5 inches in length and curly. So curly that when I visited my aunt she didn't recognise me,even though she knew I was coming!!!!

Ihave been tempted to straighten it, but feel its best to keep the heat from it, as it is so soft just like baby hair. I look like I'm stuck in a time warp.

Advice from anyone would be most welcome.

Love to all Kathy

AndieT
Member

Re: hair loss???

Hi Girls

We share our worries and concerns so I feel it only fair to share some really good news.

I was in such a state last week with pain from this swelling of mine that the BCN managed to bring next weeks appointment forward to this afternoon. My surgeon is on holiday so I saw one of the registrars. He examined me and immediately said that I had a seroma which needed draining(I have been saying this for the last 4 months). He offered to do it himself then and there or refer me to have it done under ultra sound.

I opted for the ultra sound because I knew that they would actually be able to remove all the fluid. I went to make the appointment and lady luck was shining on me. They were quiet and there had been a cancellation so they agreed to do it then and there. Not only has the whole area now reverted to normal size - they removed 160ml, of fluid but I could see on the screen that there was nothing sinister lurking underneath.

It may refill but only time will tell. At the moment I am one very happy person.

I hope you are all OK

Take Care

Eileen

AndieT
Member

Re: hair loss???

Oh dear what am I doing!!!

AndieT
Member

Re: hair loss???

Another mistake, user error again****

AndieT
Member

Re: hair loss???

Mistake see next post

brightlight28
Member

Re: hair loss???

Hello ladies,

It is a lovely sunny day here today after yesterday's storms - sometimes such a change in the weather is enough to lift the spirits if only s little.

So it looks like the 6th of Feb is a viable date - so assume it is set.

Really sorry that you are still having the seroma problems Andie - and must be so unsettling to have such a divided opinion from the experts as to what should be done. I just hope they sought it out soon so you get your quality of life back.

Laryngospasm seems terrifying Caron and is all you need on top of dealing with BC - again just hope the increase in the medication will prevent any future attacks. So sorry Betty has been battling an infection too.

Gail I hope you have been have lots of wonderful shopping trips and buying those things we often spot and would like - but then sensible hat takes over and puts the frivolous item back on the shelf.

Kate - hope your dark days will soon be filled with light.

Jo, hope the Zolodex is kind to you. I went for my second injection yesterday and the chemist had filled the prescription with a cheaper brand that involved all kinds of preparation that tested the intellectual capability of the practice nurse and two doctors before they could adminster it. I still had a period this month but was told that these should gradually go after a few months. No menopausal symptoms except for vague pains in joints this morning - so I guess the new implant is working already.

I have found the last couple weeks quite difficulty - seeing the anniversary date for BC diagnosis come and go as well as the anniversary of the life I used to have before BC. I do find it difficult to deal with the aches and pains coughs and colds that we all go down with from time to time and not immediatly think that it is a return of the monster. At my last clinic appointment on Wednesday I mentioned my anxieties and as a result I'm going to be referred for some kind of psychological counselling. So I hope that will help.

Also been trying to do something drastic about losing the stone I gained from the treatment and have been following a slightly modified cabbage soup diet that seems to have been devised by a hospital in America to recommend to patients who need to lose weight rapidly before heart surgery. But after a week on the diet I seem to have only lost just over a pound. So obviously not working for me. Next course of action will be to increase my exercise!

I've had a very busy time at work and often not going to bed until the early hours. But at least I know there is an end in sight by the first week of December. This week I'm off to a conference in Bristol on technology in education and then next week I'm going to Manchester for meetings and then on up to North Tyneside for another conference organised by the local authority. It is taking place in Wallsend - which I think is the start of one end Hadrian's Wall.

Wishing everyone well

Love Victoria xxx

caron_caron
Member

Re: hair loss???

ps Betty has got an infection where she was spayed so shes on antibiotics now and shes being naughty for some reason she has weed 3 times now inn the house good job ive got laminate floor!

caron_caron
Member

Re: hair loss???

gail good news for you but did they say what your pain in your back is then?

Please everyone be assured I was not concerned one iota about my bone scan, I am more concerned with this larygospasms which are very very frightening (watch youtube then you know how serious it is).

I can't remember what I said last so here goes excuse me if I repeat myself but you all wrote about the bone scan and I said I'm not worried by that infact the only reason I am having it is to see if I have got arthritis in it (I bloody hope so something is wrong with it and now it's started to affect my hip (probably all that dancing I did?)).

Right these attacks I have as does my mother and auntie well it's only cos I had 3 attacks one after the other (I have never had 3 before) and it was only the paramedic saying it sounds like a spasm which made me search again and I know it is laryngospasm's it's like writing about me and I swear I would stake my life on it thats how certain I am that that's what Ive got.

My Dr told me it was my asthma (crap it's not) I tried to explain it's not from my chest but from my throat closing he just repeated again bronchial spasm, and said GOODBYE .
I and Steve were really annoyed at him he is a rubbish dr even if it was asthma (which it's deffo not) he never even gave me a steroid inhaler!!

So I had to go about it another way I wanted my amitriptyline increased by 1 tablet as this is how you treat laryngo it's just coincidence I was already having 1 tablet a day so obviously 1 tablet never stopped me having the attacks.

Now I know what it is called I am not going to leave it as it is so serious so I told my trial nurse as I can talk to her.
So she said well have 2 a day I said yes but then I won't have enough will I, so she said she would come in with me to see onc and explain to him,which is what I did he said yes I am having the spasm's but I'm not suffering from the syndrome (this does not make sense to me Ive either got it or not) he was quite willing to let me have 2 a day and he said and anything else that would help me ( he means cos I suffer with my nerves really bad and the way to treat that is with amitriptyline! (so 2 birds with 1 stone spring to mind).

So we told my dr's that I am allowed 2 anyway they rung me (drs) and said DR is not prepared to increase my dose !! GOD so I had to get hospital to ring them up!

So I am now having 2 a day and also joining in the tradition of seeing MY NUTTY DR !! lol
She is going to help me not be so nervous (yeah right,you can't help who you are can you)

What else ohh yes my DRS rung up again yesterday and reception said DR wants you to go for a blood test (I'm thinking why? is it cos I am having 2??)

Steve rung them back and asked what the test was for and reception said that a heart specialist had been in and saw the ECG the paramedics did on me and it's him who had ordered my Dr to do the test,so I don't know if my Dr is in trouble now as he just sent me on my way (bloody serves him right if he is!)
So Ive got that next friday to look forward to.

And today was my bone scan and the dr couldn't get the needle/line in my veins and he said " I can't believe this he said he does babies and everything lol my veins are very small ! haha he tried 3 times.

I kept my eyes shut when it was near my face (this is the gamma machine that you have the heart tests with).

Steve's birthday today and also would have been Shelly's 😞

love caron xx

AndieT
Member

Re: hair loss???

Gail such a relief that your MRI was clear.

V For me 6th Feb is clear and I have marked it in the diary to hopefully keep it that way.

I won't go into details but am having problems with my ongoing swelling which has got me caught between the opinions of the BCN the Surgeon, the onc and now the Lymphoedema nurse - they all see the situation from their own specialities and nothing is helping resolve the situation which is currently causing me a considerable amount of pain/discomfort. I see the surgeon again on the 25th and Peter and I hope that he is a bit more sympathetic than his previous comment of leave it alone and it will sort itself out - it obviously hasn't.

I hope you are all keeping well and avoiding the current round of coughs and colds

Take Care

Andie

mjjje
Member

Re: hair loss???

Gail, that's fabulous news, really pleased for you, now we can all get on with looking forward to christmas etc! you shop girl!!!
Jo X

brightlight28
Member

Re: hair loss???

Excellent news Gail - I have been thinking about you every day.

I will write tomorrow as only just finished work for the day!

But - on dates - Jo can't manage any Jan dates and Kate the same in December - so here's a final go at setting a date before picking an earlier one where not everyone can attend.

6th Feb (which I know Jo can make).

Victoria xx

katemate
Member

Re: hair loss???

Really good news Gail!!

Ihad mri today, it should have been a blood test with iodine but I'm allergic, which rules out ct scans as well.

It is all to do with reconstruction which I'll be having in June. I've seen 3 plastic surgeons and I feel happy with the last one. They've all said different things, but at last I feel confident about it.

It has been a busy couple ofweeks, with sick grandchildren and visits away. I'm still trying to visit Somerset, but the weeks just fly by.I miss the little ones terribly and I must get down before Christmas. I've done lots of shopping online. The internet makes gift buying so much easier.

Victoria, I will be in touch re dates. I know I've got a few things on in Jan, but I should be able to sort something out. I really want to make this meet up after last time.

Hope all are well. My energy levels are low at present. I slept 3 hours this afternoon!!!

Love to all Kathy

Gemdancer
Member

Re: hair loss???

Hi girls,
Just a quickie to say my scan was clear!!!!!!!!!! Hurrah!!!!!!!!!
It showed mild arthritis in my neck (not in my thigh where it hurts!), which I am blaming on too much headbanging in the 80s. Got a really thorough looking over today by a very good onc. He also put my mind at rest a bit more about the lump...but have to go back to breast clinic on Monday anyway about that. Fingers crossed it's OK!

Tomorrow ... I shop!

Hope you are all well! And all your scans/ treatments/ appointments are ok!

I will check dates and get back to you V.
Much Love,
Gxxxxxxxxxx

mjjje
Member

Re: hair loss???

Sorry girls, just a quickie to say I'm afraid I can't make January date, but please don't change if everyone can do it, I'll catch up with all on the next one!

Jo X

AndieT
Member

Re: hair loss???

Hi

I saw the Lymphoedema nurse on monday and she is of the opinion that the swelling I have should definately show some improvement with treatment i.e. massage, Kinesio taping and gentle excercise. She has shown me some simple massage to do at home(Most of which I had forgotton by the time I got home) and referred me to a person to do MLD which is professional way to do it. The waiting list is evidently horrendous so I am seeing a lady who does the first few sessions for free but then you can carry on on a private basis if you feel you will get some benefit. Before you ask what the Kinesio taping is I have very little idea at the moment, other than they put special stretchy tape on the affected area for 4 days which should help move the fluid along. I have a small piece of the tape on my arm at the moment to ensure that I am not allergic to it. I am seeing the nurse next tuesday for the first lot to be applied. I will ask for a recap of the simple massage at the same time.

I'm not too sure about going back to exercices because I was told to stop by the BCN because she was of the opinion that the movement could be causing some of the fluid build up. Yet again different professionals with different ideas - all just trying to help, with me in the middle.

I will let you know how I get on

Eileen

brightlight28
Member

Re: hair loss???

Hello ladies,

I am back at work now after a gentle introduction yesterday when I worked at home as had dermatologist appointment in the morning. My arm is still healing apparantly and will be as good as it gets (from chemo burn) next March - at which point I will be having some injections (sound a bit like Botox) to even out the lumpiness.

Have been feeling quite emotional this week as it is a year this week that the whole bc thing begun with the referral to the clinic. When I look back everything seemed so carefree then and now I know that I have to make the most of every day. Just something I have to get through. I am beginning to think the Tamoxifen is making me feel depressed - I seem to be in a dark place much of the time, but I'm scared of saying anything in case I am taken off them - and I see it as the only measure now attempting to keep bc at bay.

Hoping your scan is okay Caron - your injury sounded very painful.
Gail still thinking of you re your results.
Hope your appointment went well Andie.
Jo, Kathy - sending you good thoughts.

I'm planning on writing up the Paris trip in a bit more detail - and will post here when I've finished.

take care
Victoria xxx

brightlight28
Member

Re: hair loss???

******MEETING UP*******

Well spotted Andie - meant to write 16 January.

Looks like January date is better.

So can we confirm 2pm on Saturday 16 January - usual place.

Victoria xxx

AndieT
Member

Re: hair loss???

Hi Girls

Just back from spending half term week with eldest granddaughter in Dorset.

Gail there is no point is saying don't worry because we all know that is impossible waiting for results. Trouble is we all look for the worse case senario now, when in fact it could so easily be something simple.

V so glad that your dad is doing well, and that you did get away to Paris. I went there many years ago as a schoolgirl, and yes despite my senior years I can remember most of it!

Kate glad you are back posting after your recent bad few weeks.

Caron I had a recent bone scan because of unexplained pain;but it showed nothing sinister just arthritis in more places than I care to think about.

Jo how are you.

I am of to the hospital this afternoon to see a Lymphoedema nurse for an assesment to see if the ongoing swelling of the surgery site may be lymphoedema of the breast/chest area. I will let you know.

As for our next meet unfortunately I can't make the 5th and although I have something planned for the 12th I could probably reorganise. January 15th is a friday but at the moment all January saturdays are clear.

Take Care

Eileen

caron_caron
Member

Re: hair loss???

Gail,
I would think they did another scan because one wasn't clear too (this is the first thing to pop into my mind) hope they don't let you fret too long. xx

V so so pleased your Dad is a new man and he can read print again, I know the awfulness of being blind as I said my nanna was blind from about the age of 60 (she wasn't totally blind then,it's when it started and I'm sure I heard it was due to measles?).
I know how she struggled and she was deverstated when she could no longer pick a winner in the gee gee's!(she loved doing that!).

Kate glad your able to write how you doing?

I am also having a bone scan (well BCN told me to ask for one when I see onc this week) since radiotherapy my shoulder is really painful in certain position's BCN said I have now got a frozen shoulder from the radiotherapy (they know it's this because I had really good movement in it and got discharged so quick from physio).

I said it just felt like my bad back pain and said I was hoping the ct scan would have picked up arthritis but she said it wouldn't and I need a bone scan she thinks I'm too young for arthritis but I explained what happened to me, I was doing some gardening for a friend and her hubby had filled a wheely bin with soil well I went to move this bin but it just fell down as it was so heavy I managed to stop it hitting the ground with both arms and one leg ie: it fell on my thigh, I can honestly say it was the heaviest thing I have ever known, I ended up with a massive bruise on my leg and next day one of my arm's was like paralysed !
I had to have it strapped up for 6 weeks as I had damaged carpal tunnel anyway a few day's later I couldn't turn , sneeze,cough anything without extreme pain, I should have gone to dr's but I never and I never connected the two as it was day's later it was only after a while I read that if you damage your back it doesn't show right away as it takes day's for the swelling to happen, anyway ever since then Ive had a bad back.
If you damage your back it can start arthritis last week I was sat on a chair and I could feel spasm's in my lower back but hopefully I will have some diagnosis soon?
They want me to have bone scan as if I think "oh it's my bad back" then I might miss something more sinister.

Also I had to have an ambulance called on Saturday night, ever since I have been ya high I got these episodes of not being able to breathe it's very frightening and it's the reason I stopped smoking as I was getting more and more of them,I have got asthma but this is different it's like my throat closes up, My mam and auntie also have these episodes but I put it down to being part of asthma and smoking ,I haven't smoked for over 10 years now and I still get them on Saturday I had one attack then I got out of it and it started again, and again, so Steve called a ambulance by the time they came and they were very fast 3 minutes! I had got myself out of it again,this is also the attack I had on the way to hospital (surgery) and then after, These attacks can also happen at night when I am fast asleep they are horrible.
The ambulance said they don't think they are panic attacks but a spasm of my throat, I did think that it might be obstructive airway disease but I had another look and I FINALLY KNOW WHAT IT IS AFTER ALL THESE YEARS!!
It's laryngospasm that is your vocal chords shut without warning if it detects any water or whatever so it shuts to stop you drowning!! but nearly kills you in the process!!
And they can give you amatriptylene but I am already taking this and it hasn't stopped mine, so Ive got to go to dr.s now to explain and see if he will up the doseage of it but he might want to send me for test's first?
Mine is obviously genetic as my mam and auntie have it mam only said last week " I didn't think I would be here today" I said why? and she said she had one of these do's and had a second one soon after,I said "Ive had 2 before" but she has only ever had 1 before.

Poor Jordan's girlfriend was frightened to death on Saturday!!

Thats all my news ! lol love caron xx

katemate
Member

Re: hair loss???

Gail. I had to have repeat scans as the results weren't clear. Everything was fine, Unfortunately, the worrying and waiting seem interminable. Just to let you know that you are in my thoughts.

Victoria, so glad you enjoyed Paris. I know what you mean by the depleted energy levels, Somedays I'm incapable of anyrhing. Good news about your father.

I'm fine for a December meet although the 12th would be better for me, but will go alomg with the majority

Love to all Kathy

brightlight28
Member

Re: hair loss???

Meeting up

If we want to go for a December meeting - think only the first two will be possibilities..

5 December
12 December

If no good - we could try for January..

15 January

Let me know what which date/s you could manage.

Thanks

V

brightlight28
Member

Re: hair loss???

Gail, you know as I wrote to you how worried I was - as we all are.. and good to see you here. Lets just hope the extra scan was because they wanted to pinpoint the part where you have been having pain - or because the first scan wasn't clear. That was certainly the case for me with my first bone scan. Had to have it repeated. Very pleased you managed to get away for a few days.

I am having a good time here in Paris - but have nothing like the energy levels I had pre cancer and seem to get weepy or upset at almost anything. Today it was because OH wanted to go into a tool shop. Just didn't want to have to wait outside. Okay in the end - he spotted what he wanted to buy quickly and we were on our way again.

We went for a walk this afternoon along the linear park called Promenade Plantee that runs high above the Paris streets from Reuilly to Bastille- built on a former series of viaducts. Some wonderful vistas along the way - including a repeated set of statues of Michelangelo's dying slave across the top of a building.

My father is much improved by the way - and is being released from hospital tomorrow. My brother in law (Peter) who went to see him today described him as a new man - and I certainly thought that too when I spoke to him yesterday. He says he can even read news print again.

Victoria xx

Gemdancer
Member

Re: hair loss???

Hi guys,

Had MRI which was awful. Hate it! They worried me because they said they needed to do extra scan so am now convinced it's because they saw something nasty. Won't get results for a couple of weeks.

We have just been down to Devon for a few days. Was on the beach today paddling and collecting shells with monster. It was such a tonic to be away, but as soon as i got back ... felt all the worry come back. Sigh!

Much Love to you all and V ...hope you're having a lovely time.

Gxxx

caron_caron
Member

Re: hair loss???

Gail any news yet? were all getting worried now.

caron_caron
Member

Re: hair loss???

V so glad your dad is over the worse now, have a lovely time in Gay Paris! x

brightlight28
Member

Re: hair loss???

Good evening ladies,

Just to let you know my father has been fine so far today - and his blood pressure remained in normal range. He was actually sitting up and talking quite normally and was talking about all the things he would like to do when he's well again.

We are away now in the Paris apt - not far from Plsce Italie and the Latin Quarter and only 2 hours from London so it means I can get back quickly if needed. I thought quite hard about whether I should go away and if he hadn't come through the operation as he has done I would have cancelled. But he said he really wanted me to have the break.. so I've gone. My mother and sister and his friends are all visiting though - so he's not short of company - and I shall speak to him each day - now he's mastered the hospital phone.

Gail you are in my thoughts - do let us know how you are when you can, but equally know what its like to be in a dark place.

Victoria xxx

mjjje
Member

Re: hair loss???

Oh Victoria, I'm thinking about you and your Dad all the time and sending you and all your family good and positive wishes!
Lots of Love
Jo X

katemate
Member

Re: hair loss???

My thoughts and prayers are with you and your family at this worrying time.

It seems you have so much to deal with at present, but we're your friends and we go through things together. You're not alone!

Love Kathy

brightlight28
Member

Re: hair loss???

Thank you Andie.

My sister has called as the surgeon phoned her. My father is currently in intensive care after his second operation. He has woken up and spoken to staff. The consultant said the bleed was caused by his blood pressure rising dramatically after the first surgery - but the bleed did have one good result which was to loosen much of the remaining tumour - which he's now removed. The surgeon thinks he is in better shape this time post operatively and is not expecting another bleed (this is where I don't want to tempt fate). He did say though it would be too risky to operate again - so can only hope this time it will work.

Victoria xxx

AndieT
Member

Re: hair loss???

Hi V

Not sure what to say but as always I send you my love and want you to know we are here. Keep as positive as you can, he is being treated now and will hopefully have a good outcome.

Andie

brightlight28
Member

Re: hair loss???

Thought I would give you an update on my father. He has experienced some bleeding in the cavity where the pituitary gland was removed and possibly some more tumour is in the space that was not removed originally. So this means he is being operated on today essentially to save his sight. The surgeon is going through the less risky nasal cavity route again - but if it is not possible to clear the area he will have to use convential brain surgery via the skull. We last rang the hospital an hour ago and he was still waiting to go into theatre - and told it would still be today. I rushed over to see him this morning and took a friend with me from work. He seemed more or less fine mentally and had a conversation about the Middle East and old Highbury - as that is where my colleague lives - and was where his father first lived when he moved here from overseas. He was quite tearful at times - but I was able to reassure him that he would be bound to feel emotional after all the drugs he's receiving - especially high levels of steriods. The surgeon did say the tumour (though classed as benign) has been caught very late and he had never operated on one its size. I will let you know how he gets on - as I say I wasn't sure I should write... but then thought well we do share news the bad as well as the good.

Thinking of you Gail.

Victoria xxx

brightlight28
Member

Re: hair loss???

The healing mass sounds very positive Kathy - and I'm sure I felt the good vibes from it.

Doesn't sound right about your friend caron - thought the idea was for all lumps to be checked out - hope she went back.

I came home early today still suffering after affects of flu and pneumonia jabs. Not been to see my father post op yet - but going tomorrow. My mother and sister went today - and as soon as my father saw them he burst into tears. He thought he was breaking the news to them for the first time about the tumour and was worked up that the operation had failed. But this was because he is still a bit confused - and the medics reassured him that all was well. And apparently he is already beginning to see better. He is being kept in for a few more days as he's developed a haemotoma somewhere near operation site - though this will go on its own and is not unusual

The electric circuit for the central heating and kitchen appliances has broken - so feeling very cold at the moment. Still not long to wait as an electrician is coming in the morning.

Going off to Paris on Friday for a week - so a lot to fit in before workwise and on a training course tomorrow morning.

Gail - hoping you are okay - imagine the waiting is very difficult xxx

Victoria xx

katemate
Member

Re: hair loss???

So pleased for you,Victoria, it's such a worry when a parent is ill. Here's hoping for his speedy recovery.

Gail, I hope things went well for you. This waiting is the very worst. I'm thinking and praying for you.

Caron, I'm seeing the surgeon next week about my reconstruction. I'm having 2nd, 3rd and 4th thoughts about it. I might sound you out in the next few days.

I hope Jo and Andie, things are ok with you.

I've been to a healing mass today, I prayed for us all. It was such a lovely place, so peaceful, quiet and prayerful. It seemed to take all my turmoil and worries away. They have healing masses several times a year so I will try and go again, as I feel it has done so much good, emotionally for me.

Love to you , Kathy

caron_caron
Member

Re: hair loss???

evening all, no news from worried Gail yet.

I know of a lady who's mother has had bowel cancer (twice) and her dad has just died of cancer anyway this girl (woman) found a lump on her breast she got referred by her gp she went to hospital and they said they are sure it' a cyst but can't do a mammagram as she's under 35!! have you ever heard of ths before?? it's ludacris to add insult to injury the girl is 35 in 2 weeks time! so they told her if she still has the lump in 2 weeks to get referred again ! madness.
I know they never did a biopsy as far as I know they just examined her.
But I have read other younger ladies on here are they not entitled to a mammagram? (I don't mean entitled) you know what I mean.
So how do they diagnose younger women then?
love Caron xx

mjjje
Member

Re: hair loss???

So relieved for you V, wishing your Dad a very speedy recovery!

Thinking of you Gail as I'm sure you won't yet have the results of your MRI so I know how worried you will be feeling right now! Really hope they won't keep you waiting too long!

Jo X

caron_caron
Member

Re: hair loss???

V well done on your dad's op just recovering now.

Gail how did you get on ? please let us know asap thinking of you xx

Auntie Margaret was being sick from the medication she was on for her broken leg, makes me think though they only told me to give Owen paracetamal !!
night xx

brightlight28
Member

Re: hair loss???

Hello ladies,

Hoping everything went well today Gail - at least with the scan.

Thank you all for your good thoughts. My father is now in recovery after the operation. It was a much larger tumour than the surgeon imagined. He thinks he managed to get most of it out - and is not too worried if there is a bit left as they can get at it later through conventional brain surgery or through treatment with rads. It is a localised tumour therefore not classed as cancer as it is not spreading through his body. There may be a slight improvement to his sight. He is currently quite confused - but this we are told is because of the high levels of steriods and other drugs he is on - and not due to brain damage. He should slowly improve over the coming months now that the pressure is lifted away from the brain.

Thinking of you all.

Victoria xxxxx

brightlight28
Member

Re: hair loss???

I will write more soon - but have had a very long day - and glad when my father's had his operation tomorrow.

Just wanted to wish the very best of luck for tomorrow GAIL - thinking of you such a lot. xxxxxx

Victoria x

mjjje
Member

Re: hair loss???

Thanks everyone for your good wishes and kind words.

V thinking about you and your Dad and hope all goes well with the op!

Gail, good luck with MRI, another tense moment but I'm sure it will all be fine, just a shame we have to keep going thru these grusome scans and appointments, but that is the nature of the beast!!!Fingers crossed for you!

Kathy, hope you're starting to feel a bit better!

Andy, I got real probs with my big toe and recently had antibiotics for an infection but I don't actually think that it was one that I lost though, but am sure it was caused by TAX. Seems to have gone black now!

Caron, hope Auntie Margaret is ok?

Take care everyone and once again all the best Gail and Victoria, big days tomorrow for you both but in different ways!

Jo X

caron_caron
Member

Re: hair loss???

Forgot to say on Saturday Jamie was having his car looked @ by Steve when Jamie was looking out the window and said " oh yeah and thats not nicked is it" I said "what" he said "there is some chav on a moped riding it with no helmet on".
So the chav just stood the bike up and walked away so I went on the front Steve said ring police and he gave me the reg for it so I rung police up said we suspected this moped had been twoc (oh yeah I know the language! lol) anyway copper says "can't tell you if it's been reported or not" so I said " well maybe the owner might not know yet"
So that was that then 4 more chavs went past looking @ the moped .
Steve went up to the moped and he said it's definetly nicked all the wires are out of it,so I rung police back said it's deffo been stollen.
Yes it was pinched the night before from Waltham (outskirts) and we reported it stollen before the owner had!!
Dont know if it's much good now they (chavs) had ripped a panel in half to get to the wires.
So I'm off to cop station Friday to view photo's! only last time I had to view photo's it was so embarrassing cos I was looking @ ppl I knew!! only I didn't know what they had been up to!lol
love caron xx

caron_caron
Member

Re: hair loss???

GAILGAILGAILGAILGAILGAILGAILGAILGAILGAILGAILGAILGAILGAILGAILGAILGAILG

Will be thinking about you tomorrow and hope all will be well and it's JUST (haha only kidding know how painful it is)arthritis.

KATEKATEKATEKATEKATEKATEKATEKATEKATEKATEKATEKATEKATEKATEKATEKATEKATEK

Know your not in a good place and who can blame you just take it easy Kate and our thoughts are with you, take all the time you need Kate (((((((( hugs )))))))).

I have got Owen off poorly today he started to get ill yesterday going hot and cold he is very pale and he's not eating today aww , he's wrapped up on the sofa now he's ok.

My Mam and Dad are having a new bathroom fitted today so my Mam asked me if it would be ok if they could use my loo.
OHHH how the tables have turned!! our boiler broke and we couldn't afford a new one right away so we had to save up for 6 weeks to be able to get one which meant we had no heating (no probs it was autumn so not that cold) and no hot water for 6 weeks!
Then after the 6 weeks we had a boiler fitted THEN ny mother said " oooh you should have sent the kids to mine to have a bath" (very convenient she never said in all of the 6 weeks! there was me carrying pans of boiling water up the stairs!

Just had news on the said Margaret (auntie) who is not allowed to be spoken about in our house! (or my mother will go ape if she knows I have seens Margaret)She had a fall in Scotland (@ someones wedding) and hit her head and she broke her leg now she is home and has been sick all night so she has been rushed to hospital as in Scotland they just put a temp cast on and never xrayed her head.
Let you all know later.love Caron xxx

brightlight28
Member

Re: hair loss???

It is good to hear from you Gail as I was getting really worried about you. Sorry you have been feeling unwell this week - do you think any of it could be down to anxiety with the job interview and MRI in quick succession? I will be thinking of you on Tuesday and hope it isn't too unpleasant - but most of all just praying it is good news. Let's just see if we can all escape this diesease. Distance is what we need. Having said that I am in doubt about how you are feeling - my stomach has been in knots all day - just thinking about my father - and that was before he even set off for the hospital. He is now safely in his ward at St George's and they are going to observe him tomorrow with the op now on Tuesday. Thanks Caron - for letting me know about the procedure, hope it is the same for him. I find it heartbreaking to see him struggling to see: he used to love reading so much. Think I am going to buy him some talking books.

Tomorrow I am due to have a flu jab - and then will go off to visit him in the afternoon. In the evening I'm going to a meal with four bc ladies from my clinic - we are all at the same stage on the journey.

Thanks for the offer of seeing your quilting Andie - I would love to do that - and to see your cats again of course!

So pleased all is well with you Jo.

It was good you were there for your friend Kathy.

Caron - I'm thinking I may just take up Bingo!

This afternoon we went off to visit Trellick Tower in North Kensington - a place I've always wanted to see. It was built as an experiment in social housing in the 1960s - and is very stark - a plain concrete tower with just an external lift shaft and walkways on each floor as the only adornments. Despite the plainness however there really was a beauty about the place. The only tall building in the area that is just beyond the market of Portobello Road.

Thinking of you all.

Love Victoria

Gemdancer
Member

Re: hair loss???

Hi girls,

I'm so sorry I haven't been here to support you all. Have been feeling crap this week. Got very worked up about stupid interview...did the worst interview I had ever done . Also have just felt pretty crap all week - real real fatigue and a bit dizzy with it. I think I need more naps! have MRI on Tuesday so playing on my mind!! But had herceptin this week and I suspect it is just starting to get to me a bit. Caron - you can feel sick from herceptin. Someone I know does and I have light nausea these days if I don't eat!

Jo - glad to hear everything is OK. Mine is fatty tissue too. I think they would be very very careful with us, so try not to worry. If you are worried... just get them to check you again in a month or so like I am.

Bright - you are really going through it. Hope your dad is Ok. You must be worrying so much.

Caron - interesting story!!!!! I think you've still got it though girl!!

Love to all and sorry to go quiet. I'll probably go quiet again soon until MRI done!

Gxxxxxx

AndieT
Member

Re: hair loss???

Hi

Jo So pleased that you have a good result, why is it that this far down the line we are all so suspicious of good news? I had a bone scan so know that for the moment my bones are OK - did that stop me worrying, NO WAY - now I would like a CT scan just for reassurance. Onc won't play ball though.

V Sending all my love and support to your dad. Saw on another thread that you fancy having a go at patchwork, next time you are here I will show you my meagre attempts. I really quailfy as a technique junkie- I love trying new things, they are a challenge until I can do them and then I go onto something new.

Gail Where are you, I am beginning to get worried.

Caron You and your family antics make me laugh. Have I ever mentioned that we live next door to my ex son-in-law(was married to eldest daughter) who has now remarried to my youndest daughters best friend, and we all get on like a house on fire. The waltons have nothing on us!

Kate Life is tough, we just think we are coping and then something like losing your friend comes along and knocks us for six again. Be strong.

Yesterday I had to visit the chiropodist. Where I lost my big toe nails to chemo, one has grown back most peculiar and has been causing an ingrowing toe nail now for weeks. The GP prescribed antibiotics to try and deal with the infection but the pain remained.
I got very brave and yesterday had half my toe nail cut away from the tip to the nail bed to try and make it grow back normally. Then yesterday evening (Very much as hop-a-long)Peter and I were in charge of a Quiz night organised for our Street Residents Association.Such a busy little bee.Today we are basking in reflected glory because everyone had a wonderful evening and we made a really good profit towards the Christmas Party.This evening it will be Strictly in front of the TV and see if I can stay awake.

OK I have rambled on for long enough to have bored everyone silly. Wishing you all a quiet weekend

Eileen

katemate
Member

Re: hair loss???

Sorry girls,

I have been following, but haven't been up to commenting but you've all been in my thoughts.

Jo, thank God its alright. I have been praying for you. You are so right, when is the tide going to turn?

Victoria, life is so tough for you and your family at the moment. If only anxiety could just be taken away, we could deal with life so much better. I hope and pray things turn out positively.

My friend was eventually cremated on Wednesday, and after a brilliant day and evening on tuesday, I just crashed. I haven't got to grips with things yet and feel rather low.
When I get like this I can't do anything but have got to get myself together as I'm babysitting tonight.

Hope everyone else is doing ok.

Love Kathy

caron_caron
Member

Re: hair loss???

Oh JO that is such such good news! yes belive them they know what thinga are they see them every day!
Its like when I told my mam I had been dx she didnt believe me (why I don't know but every serious thing my mam seems to think it's not happening?).

We again went to bingo tonight after going to b&q to buy wallpaper for hallway, I won a house (should have bin 50£ but someoe else won as well so got 25! then steve got a line he won 10 then again steve won 10 ONLY he squeaked that low noone heard him apart from me and the women opposite so he called again and i heard the woman opposite say " he's missed it now! sure enough he didnt call it in time so he lost 10!
Oh well he will learn.

V i'm sure your dad will be ok thank gos after Sunday is over.
love caron xx