28 days post SCT

This topic contains 33 replies, has 14 voices, and was last updated by  tom 13 years, 2 months ago.

Viewing 15 posts - 16 through 30 (of 34 total)
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  • #91213

    Helen
    Participant

    Ha ha what was it like before? There is no photo of me because I need my daughter to load stuff onto this IPad as I am so technically incompetent
    Helen

    #91214

    tom
    Participant

    Hi Helen

    Erm Now do I post a photo of me with hair?? and do I post the one with a side parting? or the one with a middle parting? or the one that was after My young Bride Elaine gave me a perm that I tried to comb out ha ha ha.

    What was my head like before kids made me bald? well it was Long (past my shoulders) Jet black and wavy 😀 😎

    Now wait and see if I post one with hair lol and which one he he

    Love

    Tom "Onwards and Upwards"

    Have a great week end you all xxx

    #91209

    Elizellen
    Participant

    Wishing you an uneventful recovery, Helen!

    I had mine just over a year ago and though my hair didn't all fall out while in hospital it got fairly sparse in places and very thin and straggly, so when I was allowed home I made a stop on the way at the local barber's to have it all taken off down to the wood.

    It was weird not to have any hair after 30+ years of long thick wavy hair, but after a bit I got used to the look, and was quite comfy wearing one of Bridget's famous hats when out and about till after Christmas.

    By then it had started to regrow as I went from a slaphead to a suedehead and finally saw little curls develop. Now a year later I am at the stage of having to decide if I am going to get a haircut or start having to "style" it instead of just running my fingers through it to make it tidier.

    My latest photo was taken a few weeks ago and is in my profile.

    Has anyone else noticed that other people who know you want to touch the new barnet as it grows? We go to an ex-army association lunch once a month and several of the gents there can't resist patting or ruffling my hair when they pass my chair!!

    Luv
    Elizabeth
    XX
    X

    Hoping your hair starts back strongly soon.

    #91210

    Helen
    Participant

    Hi Elizabeth thanks for this I have no sign of new hair yet, have left the old sparse hair and was thinking I'd wait until some new hair starts to grow then get the hairdresser to sort it out. in the meantime I have wig which I think looks wrong but the family think it's a good match looks too neat to me but hey ho got to put up with it
    Helen

    #91215

    Debs
    Participant

    Hi Helen,
    I never bothered with a wig I have to say. My mum bought me one (over £200!!!) as I was worried how the kids would react, but they were brilliant and I just found the idea of it too hot, and not me. When they didn't react to the hair (other than saying it felt like a hamster :-/ )I never bothered wearing it, and now find myself apologising to my mum for having wasted so much of her precious pension money!
    My hair has hardly grown since I came out but I was told it could take a few months and that it would then grow around 1cm a month….doesn't seem to be coming back curly yet so am keeping fingers crossed. Sadly the grey is still there!
    Does anyone else find it still keeps falling out even a couple of months post SCT??? Not loads but if I rub my head loads of little bits come out!! Urgghh!!
    Debs x

    #91216

    tom
    Participant

    Hi Deb's

    As you know I am a fiar few months Post sct and as for hair growth (and am sure you wont have this problem) facial hair? if I dont shave for a day or two I get a Pencil tash ? seem to have a line of "None Growth" around the mouth and chin? but am nearly used to it by now? so will let it grow as it comes 😎

    Tom xx

    #91217

    Helen
    Participant

    Debs are you wearing anything on your head? My problem is that I haven't told a lot of people what is happening to me so I feel obliged to maintain the pretence, my daughter chose my wig so she likes it and my 2 are much older than yours and don't seem bothered either way. Did you have your sct at the end of July? We will have a hair growing competition. I'm amazed at what you seem able to do, I feel too weary to do anything and just sit and look at housework! I'll know I'm better when I start gardening again.
    Tom I'm really hope I grow no facial hair! But i was surprised that no leg hair fell out. I wonder why hair round your mouth did not regrow, did you have a very sore mouth after your sct?
    Elizabeth has a fantastic mane of hair.
    Helen

    #91218

    tom
    Participant

    Hi Helen

    Its only some time that it still leaves a "Pencil Tash" other time its Normal.

    And Yes I had a sore mouth but was nearly all cleared up about two weeks a month after SCT:-( which in itself wasn't that good but was still off my food and that helped.

    as for the hair loss all I had left was my Eyelashes and that was it :-0 .

    Tom "Onwards and Upwards" xxx

    #91220

    Helen
    Participant

    Funny how it's so different for everyone my mouth was ok, very dry and my lips constantly peeling but no ulcers but the gut problems are still bothersome though gradually settling
    H

    #91219

    Debs
    Participant

    Hi Helen,
    I've been a bit different to you…I have told the world what I'm going through – stemming from when I did the Yorkshire 3 Peaks to raise £15k for MMUK. I sort of had to tell my story for that.
    So, no, I don't wear anything on my head at all! Very refreshing and people assure me I have a nice shaped head (?!).
    My SCT was on the 18th July (2 years to the day from my diagnosis)so I am a bit ahead of you and believe me, every week makes a difference. Two weeks ago I was hardly capable of anything and couldn't imagine coping with the early morning school run….now it doesn't phase me 🙂
    Up for the hair competition though I think everyone else might win…my sister came today and thought I had shaved it again since the transplant – I haven't….it just hasn't grown at all!!!
    Debs xx

    #91221

    Helen
    Participant

    Debs That is an impressive amount of fundraising, well done. I'm going to have to keep the wig on then! It was a bit un nerving yesterday when I went out in the wind and I was trying not to hold on to it and terrified it would blow away.
    Bit soul destroying for you if sister thought you'd shaved head again.
    I'm much better this week thought it was never going to improve but I'm good, mouth is nearly normal at last and gut is settling down too, hurrah!
    Helen

    #91222

    brocho
    Participant

    Hi Helen and Debs I love to hear how well you are both doing and you are so right it is day by day , sometimes hour by hour ! Helen it must make you feel much better now your mouth doesnt hurt so much, nothing makes me feel so wretched even a single cold sore !! I have lost my hair 3 times now and I knew from the outset I was too untidy for a wig ,instead I wear hats scarves and frequently nothing on my head As Debs says people are very kind and they dont stare anymore than they do when you wear hats or scarves! If you would like one of my knitted hats just e-mail me your address and any colour prefernces , cant do exact colours but will try Theres no charge by the way , sorry but havent beeb very with it lately otherwise I would have mentioned it sooner( my e-mail is bridget.rochfort@btinternet.com,( dont forget your postcode) Debs it might be a bit slow growing but just wait once it starts it will grow like wild-fire Almost there girls and it will be so worth it love Bridget xx

    #91223

    wendyduffield
    Participant

    Hi all,
    I haven't been on the site for a while as waiting for my SCT which took place on 1 September and out of hospital on 15th September which I was pretty pleased about and I seem to have got off lightly compared to some people. Mouth relatively ok, mild diarrhea and sickness and nausea. I was expecting to have no appetite but after a couple of days it returned and I was ordering off the halal menu in hospital and was getting some great curries! As I had been fattening myself up prior to transplant I am now faced with the unusual dilemma of watching my weight post transplant as I didn't really lose any weight and am now relatively inactive.

    My main problem 2.5 weeks post transplant is fatigue, sooo tired all the time and depression. It is all a bit of an anti climax after this year of treatment focusing on having the SCT, now it's over what now? Don't know if this is a common feeling and I take comfort from the fact that those a bit further on post SCT are gradually feeling better with more energy. On the hair front I went to skinhead a few weeks before transplant and was told I looked like a Buddhist nun. Post Melphalan it is now falling out and looks patchy so I may shave all off and wear hats and scarves. I got an nhs wig but dont really feel comfortable wearing it. I wish unwanted body hair had fallen out but no such luck!

    Wendy

    #91224

    tom
    Participant

    Hi Wendy

    Well done on your SCT, and it sounds as if you sailed through it:-D , only in 15 days you beat me by one day 😎 and to be fair mine was an all out attack of bowels and mouth:-/ 5 of those 16 days was nearly comatose :-/ but hey ho am better now 😀 .

    Still get tired but am learning that what I used to do prior to MM I cant do post SCT.

    As for the Hair all mine cept eyelashes left for a few weeks but back now,

    Good Luck on your continuing health

    Love

    Tom "Onwards and Upwards" xx

    #91225

    Helen
    Participant

    Aww Bridget thanks very much, I know what you mean about being too untidy for a wig, I think that is my problem too, I'm normally very lazy with my hair and in fact when my boss asked me when I'd be back at work I had to reply, 'only when I've got my hair back' then had to explain that I'd be the person who was waving her arms around and suddenly the wig would fly off and land on some unsuspecting student in our very large open plan office and I or they would be frightfully embarrassed. He thought I had a point!
    Hope your pain has all settled now.

    Wendy, I never shaved my legs before the sct thinking all hair would go but no such luck. Now I don't have the energy to do it. Saying that I'm much better since last Friday but the 'what now' feeling is normal, what now is getting better then living as much as possible around the mm, hang on in there as Tom says 'onwards and upwards'
    Helen

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