Sending lots of love to you all today X
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Hi @ChrisCKW icky posting is definitely allowed, you might well help others who have similar problems and who might feel very isolated and lonely and think they are the only ones.
However it sounds as if you are going through a really rotten time and as for the visual aspect.
I am so sorry to hear about your sister in law, life just isnāt fair is it. Also what a poignant day to have her funeral.
You must be absolutely exhausted as well with your back and fourthās, I know I would be.
Donāt be a stranger when you have downbeat news, otherwise how can we support you.
Be kind to yourself.
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Gosh @Summertime I remember you saying about the anniversary of your sonās death would be in November, it will not be an easy time for you, especially next Wednesday.
I will be thinking of you, have you thought about how you will spend the day?
We and the Blood Cancer UK support line will be there for you, and it is OK to grieve, it has been such a year for you.
Be kind to yourself and yes, families are priceless.
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Lovely to hear your encouraging news @Summertime and hope that you continue to make great progress.
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Hi @ChrisCKW,
Iām so sorry to read your post. It sounds as if youāve had a really rotten time of it and yet you still have a sense of humour which is admirable. Also, what sad and sudden news about your brotherās wife. I really hope that your stitches and bruises will heal up well and for much strength for you and for all of your family in the days ahead.
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@Erica Unfortunately i will still be here in hospital. My girls are going to spend the day together which is nice. My husband will come over to see me but only allowed 1 hour. I will be ok, I have to be. Actually, spending so much time alone does give time for processing. Thank you for your kind words xx
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Oh thatās so sad @Summertime: life does throw some 
at us 
Today was ok but running very late so was there hours!
Need to go back for dressing change on Monday or Tuesday xx
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Are you still on the cyclophorine or whatever itās called? Iām really struggling to get it down 
Xx
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Hi @Summertime I agree that being in hospital next Wednesday might give you an opportunity for processing, and perhaps reflexion, but I have also found it can feel a very lonely place.
You donāt have to go Wednesday or any day alone, we are all here for you @Summertime.
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Hi, yes I am. I really struggled too, and for a while in hospital they moved it to IV, but you need to be able to take oral before they discharge you.
There are 2 main sizes, 25mg and 50mg, and for a while I found it easier to take 2 x 25 rather than 1 50mg. So double the tablets but they were smaller. Also you do sort of get used to the smell, so a smaller pill is easier for a while.
Honestly I really understand; sending big understanding hugs xx
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I am taking a 100 mg and a 50 mg
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To be honest I think I was on 200mg a day, so 4 x 50 tablets. But I honestly canāt remember exactly, I came out taking 200, and itās gradually phasing down.
I am sending huge hugs and sympathy though xxxxx
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You sound like youāve been through the wars @ChrisCKW . I hope things get better for you.
Good luck to those still waiting or undergoing their transplants.
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@ChrisCKW, what a week, Iām so sorry to hear about your sister in law, how devastating for your brother and the family.
Hickman lines are great when they are in but a nightmare to come out. I ended up back in hospital for 6 days when mine came out due to an infection. Trial drug on top of being a blue boobie is not a good combination.
At least some hair is growing, youāre so lucky itās coming in blond. Mine is a dirty grey, didnāt realise I was so grey but I guess Iāve had it dyed brown/blond for years. Canāt wait to have it coloured but I think you have to wait until itās 1/2 inch. Like you, still wearing the wig when out, it was always better than my real hair anyway! Do look after yourself my best stem cell buddy, thinking of you and sending hundreds of very gentle hugs 
xxx
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@summertime, so sorry that you lost your son last year. You must be dealing with so many thoughts and emotions right now on top of having a stem cell transplant. Sounds like you are doing well though and hopefully getting home isnāt too far away now, hang in there. xxx
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Thanks @Lyn99 to be quite honest this past year has been a bit of a blur. Iām focused on getting through this and back home.
@Lyn99 and @ChrisCKW what advice weāre you given re isolating?
xxx
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Continue! You have no immunity to anything and the immune suppressant continues until day 100. Gradually being weaned off then vaccinations can start
I found this vaccination schedule
So nothing until day 100. Think they start with Covid etc, but no point in vaccinations if body wonāt produce antibodies in response to vaccinations
Xxx
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really? Not even close family? I was kind of hoping I could see my girls, obviously with masks and social distanceā¦
Thatās an interesting schedule, looks like we will be pin cushions for most of next year 
Oh well, at least we have that option.
Night night xxx
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See your girls, wear masks , keep windows open. My daughter does a Covid test before she sees me. She wont visit if she has a cough, cold or cold sore. (Thatās on the advice they gave)
But youll have to go to clinic where there are others, not all of whom wear their masks properly; so I figure I trust my family more than people in the waiting area xx
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Yes thatās exactly my thinking too. Hows your chest feeling? xx
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