http://www.mdspatientsupport.org.uk/forum

Hello all
quite a conversation we have going
Sarah hope your daughter has a great time scuba diving i am impressed at her going around the world so to speak by herself independent my daughter is only 17 but in a few years i do hope adventure sets in and off she will go (yes i shall cry)
I am starting to feel normal but its the tiredness which has been unusual the last 4/5 months naps sleeping up to 12 hrs even takes me a few days to recover after a transfusion have spoke to the nurse says this happens others have mentioned it reason for youve guessed unknown
Bugs think there are a lot about we have had no sun/heat to kill off the winter ones sure they are stil hanging about
Chris so pleased the signing went well and cry i am sure it was emotional esp thinking of jayne and john as we worry about them but at the same time the worry i believe is about ourselves as well as we all could all end up in their situation ...But they will be fine
here we are again this year talking about your home grown veg wished i lived nearer have just been to local fruit shop today i got blackberries still with leaves on oooooh i can feel a double cream moment coming on later you tube do post the link i will have a go but cant promise anything ...please tell how is john Watson
Jayne sorry to here through Chris that you had a bad day yesterday do hope you feel better today the sun is out here so York area may have some too i really must get this blog thing sorted having said that i accidently earlier through the links page ended up on Richard Barkers blog i love his description of himself....your blog address is it the same as before ......
well my fingers are tired, have a couple more posts to read so i will leave you all in peace and hear from you soon take care Janet

Happy Birthday Sarah......the restaurant sounds wonderful. I'm sorry to hear you are feeling somewhat under the weather. Try not to worry until you know you have something to worry about! Even when I feel really crap I dont worry because I just believe in my doctors to make me well.

Janet - so sorry to hear you have been under the weather too and for such a long time. Like mentioned the weather really cant be helping.

And Chris, wow what an amazing Friday you had. I thought of you and can perfectly understand you shedding a tear, such an emotional time. I would love to see you all singing at the opening ceremony although I suspect that is all planned....but you can pp the petition for me!

I've felt rubbish for a couple of days but I am hoping to have turned the corner.

Love to all
Jayne x

Hi Jayne, just a little note to send my love and say hi. Chris suggested i get in touch with you as we are a similar age. I've read 'your story', and it sounds like you are amazing and going through so much at the moment x i'm 44 and have 3 children ( Molly 14, Annie 12, jack 9) ... I've just been diagnosed with MDS at intermediate level so need treatment straight away so am going to the Manchester Royal Infirmary on Monday to see a specialist consultant. You and your lovely family are in my thoughts and prayers as you bravely fight this... Sending strength and positivity to you. Lots of love Fiona x

Well here I am rather sheepishly posting a reply as I feel guilty that it has been sooooo long. I am sorry. I think because I write on my blog quite frequently (daily when in hospital and about twice a week when I am not), I dont write on here, which I should!

So here goes with a little update. I am day 75 post my stem cell transplant and I feel quite marvellous really. I do get tired very easily, but I had 2 units of blood last week and they have boosted me and I feel much better.

So far I have not had any GVHD (fingers crossed it remains the same), my chimerism test showed that I am 100% donor and that their is no diseased bone marrow left. I have just been booked in for a bone marrow biopsy on 12th October (day 98) to get a better feel and understanding of how my bone marrow actually is. I have not had any issues with my mouth, and therefore have kept eating and managed to put weight on (bit p'd at this as really would have appreciated losing a few lb's!!!)

So a quick update I know, I really hope you are all doing well and look forward to hearing from you all.

Lots of hugs
Jayne xoxoxoxo

Hello Jayne
SO pleased to hear from you and at day 98 has it been that long ? might seem longer to you But great news all new Bone marrow and no old just what the doctor ordered i am sure you are so happy about this
you have had 2 units of blood guess this not up to normal count yet or is this for another reason
GOOD LUCK for the BI-Op rooting for you
Hear from you soon i hope Janet
p.s sorry i never got around to your blog can i have address thanks

Hi Janet

Lovely to hear from you. How are you? Hope you are doing good, it's an absolutely rotten day today isn't it?
My blog is www.caringbridge.org/visit/jaynesnell

Take care,
Jayne xxx

Hi Jayne

Good to hear from you on the MDS site too - though I do read your caring bridge blog quite avidly!! I'm sure it will be good to have a bit of "spare" in case of any time when you cannot eat well but it all sounds as though it's going as expected and hope all shows good progress in the bone marrow biopsy - not my favourite procedure but you seem to sail through them!! How long will the results take ? Do you have to wait for chromosome results again?

Hope you are not having any problems with floods up your way - Janet too? Even the dry South East is suffering a bit.

Take care

Chris

Hi Jayne,

I, too, have been following your blog as we are waiting to hear if a donor has been found for my husband (oh that feels strange - first time I have written it since we got married a couple of weeks ago!!). It has helped to follow your story to see what we may have to go through when a donor is found. Fingers crossed for you and that you soon feel better.


Janet