Katy post sct

Hi Judith 

Thank you so much for replying.  It's such an emotional time for 4 of us especially with Chloe donating. I agree it can be very lonely at times. 

Transplant journey is another unknown part of this up and down road.  Sometimes it just seem real. It's one of those things you see happening to others. I guess we are now those others. 

Are there any tips you can give us pre transplant as in what things for nicholas to take in with him. 

Please keep in touch. 

Hayley x

Hello Mike 

I agree there is amazing support from you all on here. (I have to pinch myself though sometimes when I find myself on this site)...does that make sense ?

I guess the whole transplant/isolation is very surreal 

Hayley 

Hi Moomy 

Yes I know what you mean us as carers remember a lot more.  Don't think I will ever forget parts of our journey since mid August. Day of diagnosis plays in my head a lot. I can't stop going over it. Just want all our lives back.

Thanks  for listening 

Hayley x

Hi Hayley, 

there are two long threads in the group about ‘items for your checklist’ and ‘Melphalan and ice’ (I’m sure Mike will be able to link for you).

not sure if Melphalan will be used, but it’s often a drug of choice for the final bit of conditioning pre-transplant, and is pretty strong!

the checklist thread is pretty long but does give quite a few ideas about what to take in. Bear in mind that concentration will be down, plus interruptions well up (obs etc) so books are not that easy, but shorter items like magazines can be useful, IT  a must for youngsters! 

hugs xxx

Hi Hayley

Just klick on the green text

Checklist for SCT Unit

Melphalan and Ice

Yes the whole SCT journey is surreal, that is a good word for the Magical Mystery Tour as I call it.

I would suggest one the process start properly that you set up your own Discussion as this will keep all your support in one place ((hugs))

Hi Hayley,

katy took in the usual IPad with loads of films downloaded because the WiFi wasn’t brilliant- she even took in a jigsaw and a couple of books - she was able to watch films etc before the transplant but once she had it she couldn’t be bothered and just slept a lot . The room isn’t that big anyway to have loads of stuff- she took a comfy pillow, a familiar blanket as she was always cold. She made a photo board as her little girl was only 6 months and of course couldn’t visit- and she took loads of comfy clothes because they want a clean set every day for infection. 

hope this helps a little x 

Your own special pillow and duvet but plenty of cover-changes, as daily change and laundry is needed. One of the dangers is, oddly, from your own skin! 
and yes, daughter slept a lot; she explained later, that whole asleep you don’t feel ill, that’s just when you’re awake. Trashy tv helps too. 

hugs xxx

Hi Judith 

We better start stocking up!....nicholas thinks we should both start back to work when he goes in as he may not be up to seeing us some days.

I just want it all over. It's something you don't think you will ever go through  

Thank you for the advice 

Hayley

Hi moomy

His own pillow and duvet sounds excellent something from home. 

Did your daughter eat much 

Hayley 

Hi Hayley,

She enjoyed small meals before the dreaded Melphalan hit, she hated hospital food so we kept bringing in tinned stuff and microwave meals that we knew she liked, as long as everything was well in date they could serve them from the ward kitchen. They had a sweet lady who served meals like that so beautifully it tempted folk to eat. They always had a stock of Heinz baked beans and soups which they would rustle up any hours of day or night! It was a specialist transplant unit of 18 room suites in Manchester’s Christie hospital. 
In the end the dietician prescribed Fortisips and we found that these were better when some ice cream was whisked in. 
As soon as counts properly show recovery the eating problems just vanish and then hunger returns too. 
Hugs xxx