[AliParticipant]

Hi Lyn

My Mum was also diagnosed last November (11.11.11 appt time 11.10am) will not forget that date in a hurry 🙁

You have not rattled on….thats what we are here for.

I think we all feel the same re SCT, its scary stuff, but then when you read things like Eves post you know its got to be worth it in the long run.

Keep in touch

Ali xx

[AliParticipant]

Hi

Fingers and toes crossed for tomorrow for you. Will be thinking of you.

Im going with Mum to have her hickman line out tomorrow – she will feel a bit more like herself without her tassles!.

Will check in tomorrow night to see whats occured 🙂

Love Ali xx

[AliParticipant]

Hi Vicki and Colin

Just checking in to see how you are both doing? Hope you are having a restful weekend.

Love Ali xx

[AliParticipant]

Hi Andy

Nice to hear from you, the pps are going in the right direction for you.

Brollies and wellies I reckon, have a lovely break away 🙂

Love Ali xx

[AliParticipant]

Hi Amanda and Bob

Sorry you have had to join us, but we are a friendly bunch!

My name is Alison, its my Mum with MM. She was diagnosed last November aged 57. We had never heard of myeloma. Shes also on Myeloma XI trial. RCD for 5 cycles and shes just out of hospital having had SCT.

If you have any questions, ask away as im sure that there will be someone come along to help.

Ali xx

[AliParticipant]

Hi Andrea

My name is Alison and its my Mum with MM (shes 58), I just wanted to "welcome"? you to the forum. I have found all the people on here so friendly and willing to share their experiences, its made the whole thing much more bearable:-)

Good luck on your journey and lets hope you carry on smouldering for a long time yet.

Love Ali xx

[AliParticipant]

Hi Mari

I was wondering what was occuring with you two, but dare not ask! Steves SCT was originally set for before my Mums and shes been home for 2 1/2 weeks now.

I think the time you have had to wait is ridiculous – and all down to funding?! makes my blood boil.

Still, you have a date now for next week – just as you are back at school (go figure) and I hope its all plain sailing from now on.

Did you enjoy your holiday?

Love Ali xx

[AliParticipant]

Hi Cathy

Im Alison, my Mum had her transplant 2nd August so I know how you must be feeling right now. I had read all I could about the procedure and thought I was well prepared, but im afraid nothing could prepare you for whats happening to your husband right now. Please understand though that it will get better and as soon as my Mums blood counts started to rise she felt alot better. As Helen suggested please read my threads "Mums SCT", I asked lots of questions and got alot of good advise.

Take care of yourself and please keep us posted if you can.

Love Ali xx

[AliParticipant]

Hi Vicki,
I hope the stem cells are causing Colins "under the weather ness". The ironing is all done and kids are good to go!

Hi Helen,
What an awful thing to happen to your neighbour and certainly helps to put things in perspective doesnt it? You are right, at least we have the chance to show each other how much we care. My heart goes out to that poor family.

Do you ever think you will forget about MM for more than a couple of hours? I sincerely hope so. Im only the daughter of a sufferer and I cant switch my mind off to it completely. Its nice that you are seeing patients again, but I bet you are cream crackered by the end of your shift.

My Mum is doing ok, if only she could get rid of the blooming acid, its really painful and is making her vomit every now and then. She says she even feels her tears have an acidity to them. Shes been prescribed another tablet to see if that helps (cant remember the name!). I hope it goes soon as if it were not for this blinking acid she would be doing brilliantly.

Love Ali xx

[AliParticipant]

Dear Eve and Slim

That is such fantastic news, and like Jean it has made me well up with tears of happiness for you both. I know you have had a tough time of it and I cant tell you how happy I am for you. Do go and have a fantastic time on your holidays, you really deserve it:-)

Love Ali xx

[AliParticipant]

Hi Dai

I am really sorry to hear you have been having a hard time lately. I do hope you are on the mend now.

Thank goodness for nurse Janet, shes worth her weight in gold.

Take it easy and rest up

Love Ali xx

[AliParticipant]

Hey Vicki

If only you could have seen my mountain of ironing – I think I would have prefered doing the painting!

Pain I think on day 4, please dont start stressing about not getting pain though, as you know everyone is different. It wont mean no stem cells, im sure:-) Keep us informed xx

Hey Tom

I think Mums going to have a try at driving tomorrow and like you say will be better without the line as thats the side of the seatbelt rests.

As for the cyber hugs I do feel you deserve one or two back as you are always there for us all, thankyou xx

[AliParticipant]

Hey Vicki

We all worry, I worry that I will always be worrying – will I ever be able to not worry again? – does that make sense? – I just keep thinking if only I could turn back time:-(

Glad you have been able to have a nice couple of days together:-)

I am rooting for Colins stem cells!

Love Ali xx

[AliParticipant]

Thanks Craig,

Its a busy time for you – hang in there!

Poor Etta, hope its not too rough for her. Just remind her it will soon be over. There were a couple of days where my Mum asked me not to visit (she just wanted to sleep) and she felt really poorly. My Dad still went though and sat with her. We refer to this time as the hibernation!.

If you get time:-) take a look at the thread Mums SCT and look at the end ones, I cant believe how far my Mums come and Etta will be the same:-)

Love to you both Ali xx

[AliParticipant]

Hi Helen, Vicky and Tom

Yes, im so proud of Mum, the difference in her from last week to this is amazing – even she is noticing the small things.

So, yesterday we went to clinic. They are happy with bloods, hickman line to be taken out next Monday and then she will be discharged from Nottingham back to our local haematology unit. She will be randomised at the 3 month stage, there is now a new drug that may be available on the Myeloma 11 trial (version 5) called Verinostat. to be used in conjunction with Revlamid? so we will wait and see which arm shes randomised for. We were told that the effects from Melphalan do not stop for about 8 months and so we will not know if its all "worked" until the 3 month mark.

Cyber hugs are definately allowed and I will pass them on later!:-) as are real hugs from people without bugs! Out and about is fine at "off peak" times. One thing we didnt ask about is driving….when did everyone start again?

Am going to fetch some jelly beans for her Helen, I wonder if she will wrinkle her nose up?! If she does I know 2 kids that will eat them with gusto!

Right, off to iron the mountain of new school clothes, roll on tuesday for the new term:-D

Love to you all
Ali xx

Helen, hows work, are you up to "full speed" hours yet? x

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