[AliParticipant]

Hi Craig and Etta

Thankyou for posting, I was wondering how you were getting on.

What a relief Ettas home. My Mum had the bile/sickness – (shes been home 3 1/2 weeks) she still suffers quite badly from acid and as a result has a mouth full of ulcers. I dont recognise the woman in hospital to the woman now, Mums doing really well, still tired in the afternoons etc but is out and about, mowing the lawn etc! Its amazing, I do hope that Etta picks up as my Mum has. Dont get me wrong there were a few tears on her return home as I think she expected to feel better than she did and she was pretty hard on herself. One day at a time I think is the order of the day.

Take care of yourselves

Love Ali xx

[AliParticipant]

Dear Cathy

Im sorry to hear that Ivan is having a rough ride of it.

As Eve says, try and catch hold of a Consultant and ask your questions (they used to do morning rounds with my Mum).

No wonder Ivan is feeling emotional – and you. Just stay as positive as you can (its so hard to look cheery when you visit and your loved one is soo ill isnt it?) most days I came out of the ward, burst into tears and cried my way home – not a good idea when you are driving , and I thought Mum would never turn the corner – but she did.

Please keep us posted

Love Ali xx

[AliParticipant]

Hi Chris

Wishing you the best of luck for today!

Paintballing sounds fun – ouch!:-)

I thought it was only me watching Dallas! Lets discuss after the next episode!

Hi Eve

I hope you had a lovely holiday. Thanks for the hair info. Will you just let Slims hair grow or will you give the "bumfluff" a mow?.

Love Ali xx

[AliParticipant]

Hi Michelle

Just a question about hairloss. When did yours start to make an appearance again? My Mum is 7 weeks post SCT.

Hope you are having a good weekend

Ali xx

[AliParticipant]

HI Vicki and Colin

Good for you with your questions!

Have you seen BikerChris post? hes just had funding granted for Plerixafor – good news:-)

Try not to think about it not working (just goes to show there is a plan d,e,f etc) you are going to get there!

Ps I am one of the ones that watched Dallas – loved it, can remember it from before, me and Mum used to watch it before I left home (though she said today she didnt like much!).

Have a lovely weekend and try to chill:-)

Love Ali xx

[AliParticipant]

Hi Chris

Firstly, congratulations on your recent wedding!

Its great news to hear you have been granted funding for Plerixafor-(did I read its about £5,000 per shot?). I am sure you will collect those lovely cells this time. It will be a good boost to Vicki and Colin as they are going through the process of applying for funding for it. It just doesnt seem fair as here in Nottingham its given if needed-no questions.

My Mum had her head shaved before the hair quit and her head gets cold too!

Wishing you the best of luck for the 12th.

Ali xx

[AliParticipant]

Hi David

Thats really great news – phew 🙂

Love Ali xx

[AliParticipant]

Hi you two

Right, good luck for today with the Consultant.

Questions at the ready?

I really do hope you get some answers and find out what Plan C is.

Im guessing that your consultant is frustrated he cant do his job and give what his pateint needs purely due to monetry restraints. The main thing though is Colin gets the treatment he deserves and I will be rooting for you.

Please let us know….

Love Ali xx

[AliParticipant]

Hi Joanne

Sorry you have had to join us on here:-( But on a positive note I dont know how I would have coped without this place to ask questions and have a good old moan. There is always someone that comes along to give friendly advice and encouragement and always someone who has "been there" before. Please use the info guides on this site also and be prepared.

My Mum was diagnosed last year in November had had RCD like Colin (above). Its been 3 weeks now since she came home from having her SCT, that was the thing me and my family were dreading the most. Have a little look at the discussin My Mums SCT under the treatment section. My Mum has a very positive attitute and once she gets her head around something she just goes for it. The SCT is not nice, no use pretending im afraid but it is do able (easy for me to say!).

I understand why you "hid away", I have been the opposite – im 38 years old and for the first time ever I feel like an adult (not sure if I like it though!):-)

I hope your Dad collects those lovely stem cells this time:-)

Please keep us posted

Ali xx

[AliParticipant]

Hi Tina

Im just wishing all the best for your Hickman line going in tomorrow. My Mum had hers removed on monday, and although she was glad to see it go it proved really a godsend, as you have lots of bloods taken and of course lots of iv drips.

No pain going in or coming out!

Love Alison xx

[AliParticipant]

Hey Vicki and Colin

Ditto what everyone else has said. Good luck for thursday and I hope you get some answers.

Love Ali xx

Ps look at your messages on your profile

[AliParticipant]

Hi Vicki and Colin

Oh no, I dont know what to say to you both. Im so sorry you have got this added worry.

So, let me get this right. You have got to go back and try again tomorrow?.

I am gutted for you. Glad you got some good info from Ellen. There has got to be a plan c.

Love Ali xx

[AliParticipant]

Hoorah Wendy

Its great to hear your lovely news!

Enjoy!!:-)

Love Ali xx

[AliParticipant]

Hi Gill

My Mums had Zometa infusions every 4 weeks since her diagnosis last November. Having said that she has not had one in a little while as she has just had her SCT. She was told she would be having it for 2 years. We go to clinic today so I will check if its still available for Mum in our area and let you know. Whereabouts are you?. It shouldnt matter a jot if you started as a private patient.

Ali

[AliParticipant]

Hi Dai

I am pleased the anti biotics seem to be working, but sorry you feel washed out still. Maybe a few more of Janets roasts will sort you out?:-)

Its awful having to vet people before you see them isnt it? in case they are germinated. My Mum had to tell my brother not to take his son (4 months old) as he had a cold and she felt terrible for doing so, but you just cant risk it. I got Mum some masks to keep at home, if in doubt she could ask visitors to put one on, but I doubt if she ever would- I think I would have to use them (just for the fun factor)>:-)

Love Ali x

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