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Original poster

Lots of MN handholding please - relapse

180 replies

DashingRedhead · 28/09/2014 22:14

Hi everyone, some will have seen my posts in biscuits' threads and I know lots of you have very kindly passed on the word about my stem cell donor search. But now I need a miracle: the leukaemia is back but this time in my central nervous system.

This is not only very rare, it's also really difficult to treat: chemo intravenously but also to the central nervous system via the ventricles of the brain. It's really unpleasant, though I shan't care if it manages to cure it.

My husband and parents last week were told to start preparing for the worst. However, one of the consultants wasn't happy and I've been referred for a second opinion to the Marsden in the hope they may be able to treat me.

I'm so scared but at the same time feeling hopeful that at least they haven't given up yet. Any prayers, candles, support, good vibes you can spare, please please please think of me tomorrow. I have two DC who need their mummy and so much to live for.

OP posts:
wewillmendit · 29/09/2014 00:17

Sending strength and love Dashing. I hope the Marsden are able to help you xx

Browneyesblue · 29/09/2014 00:29

Prayers, love and strength x

theclockticksslowly · 29/09/2014 00:31

Thinking of you and sending positive thoughts to you and your family Flowers

flowerbombVR · 29/09/2014 00:42

Your in my thoughts and prayers x

Applefallingfromthetree2 · 29/09/2014 00:43

I am still up and am thinking of you now, and I will be thinking of you tomorrow too.

Sending you prayers and virtual hugs. It must be so difficult for you but as much as you are able keep strong and positive!

Original poster
DashingRedhead · 29/09/2014 01:08

I am so lucky with my DH and wonderful parents who are all coming with me. I feel stronger when we're all together. It's just all so much going on in your head and heart.

The website address is perfecttenmatch.co.uk/ and we're generally finding that the easiest way for potential donors to register (especially those over 30) is to use the Delete Blood Cancer site here: www.deletebloodcancer.org.uk/en

I do need to update the info given how things have happened lately but it's been hard to keep up.

OP posts:
Solo · 29/09/2014 01:24

Thank you...

Solo · 29/09/2014 01:28

:( they don't want me...chronic illness.

CatWitch · 29/09/2014 01:40

I am sending you masses of hope from the US. You will be in my thoughts..

I have signed up to be donor because of your thread. Xx

TheWholeOfTheSpoon · 29/09/2014 01:50

Happy to hold your virtual hand, OP and send as much positivity as I can. What a crap hand in life you have been dealt. x
As an aside, can you really only be 16-30 to donate to Anthony Nolan?!

ShakyTheStork · 29/09/2014 01:55

Sending positive and loving vibes straight to you.

Wishing you strength, courage and comfort for your journey ahead.

Hopeful and loving thoughts are being sent your way Flowers

wotoodoo · 29/09/2014 02:20

Umbilical cords and placentas can be used to harvest stem cells, could MN be asked to publicise this? If I had known I would have gladly donated all 4 of my dc's!

They only collect from 8 hospitals in the whole of the UK, surely this could also be the subject of a campaign? If there were collection points from more places that would help increase donations.

Wishing you great hope and strength op x

CariadsDarling · 29/09/2014 02:22

Im so sorry this is happening. xxxx

Roonerspism · 29/09/2014 02:25

Prayers, light and positive hope winging its way from me.

Another one v interested in the donating placenta part. I'm always amazed more hospitals don't do it.

marysafairy · 29/09/2014 02:26

Wishing the best for you and your kiddies xx

Original poster
DashingRedhead · 29/09/2014 04:21

Thanks everyone - I will win this. I'm not going to be defined by this thing. There is so much more in life.

OP posts:
HicDraconis · 29/09/2014 05:46

Found this thread from the one about donating placentas - which is a bloody good idea.

Wishing you strength and positive vibes from NZ to tide you through the night, and will light a candle for you when I get home from work to run through into the UK morning.

Panicmode1 · 29/09/2014 06:44

Thinking of you and praying. Xxx

Eyespy24 · 29/09/2014 08:15

So sorry to hear this & thinking of you and your family.

I've never looked into becoming a stem cell donor but have decided to sign up once I've finished bf my DS.
I hope you find a match.

SixerofthePixies · 29/09/2014 09:24

Have just signed up to be on the register for delete blood cancer, sending positive vibes

meerschweinchen · 29/09/2014 14:38

I've just signed up too, due to this thread. Really hope things are going well for you today. I have everything crossed for you

trulymadlydeeply · 29/09/2014 16:31

So sorry to hear this, Dashing. I saw your post on Biscuit's thread and had already shared your FB plea.

Stay positive, lovely. Keep going, keep going!

Lots of love and positive thoughts.

Xxx

Allisgood1 · 29/09/2014 20:03

I've been following your story red on biscuits thread. I am so sorry to hear this. But you are right, this won't define you and you'll beat it. I signed up to the delete blood register because if your plea. I hope you find a match soon Thanks

CatWitch · 30/09/2014 00:55

I'm hoping you had a good day today..sending love and hugs to you..xx

Original poster
DashingRedhead · 30/09/2014 02:56

Hello everyone. Not sure what happened to my previous answer, seems to have vanished into cyberspace.

Well, nothing can change the danger I'm in, but the consultant can definitely change how I feel and approach it! Really good consultant at the Marsden today. The immediate upshot is that he'd like me to get into radiotherapy as so as possible. This is because the spine and brain need treatment ASAP. Weirdly the disease is not in my bone marrow just at the moment. It's dangerous irradiating both head and spine but has to be done because that's where the disease is. He's also thinking ahead to possible transplant later (which the other lot had given up on) because it's almost inevitable the disease will come back in the marrow.

My parents and DH all came with me, which suited me best definitely but I was a bit concerned how he'd react to the invasion. He was great, said it's much the best for the family that way.

He has given me hope again. Yes, my survival is really problematic but he told me to keep fighting and we'll see how we get on. 'It's about time you had some good luck isn't it?'

It may all still go wrong but I feel like I do have even a little chance now.

Thanks everyone for the support. It really makes a big difference. And huge thanks to everyone signing up as donors. You could be my super hero - or someone else's! You're doing something amazing anyway.

Quick response to the PP about Anthony Nolan and age. Yes, they'll only register people aged 16-30 but will keep them on the register until they're over 50 I think. We're encouraging people to go to Delete Blood Cancer just because they take up to age 55 and that's more in keeping with the people we know. Also, if you're a blood donor you can register then up to age 50 any time you give blood.

Stay with me folks - Thanks to you all.

OP posts: