Not a good day. leukaemia diagnosis.

[biscuitsandbandages]

When I woke up this morning I was a mum of 3 with an 8 week old baby.

Now im a cancer patient on thr coronary care ward.

This cannot be happening to me.

Just checking in to say GO BISCUITS, you are amazing. I now have a vision of you sitting up in bed in mask, cape and underpants over your tights. What are a few rogues cells here or there when you have the power of mumsnet behind you.

Just checking in to say GO BISCUITS, you are amazing. I now have a vision of you sitting up in bed in mask, cape and underpants over your tights. What are a few rogues cells here or there when you have the power of mumsnet behind you.

I've no idea why I keep double posting!

Evening Biscuits!

You're quiet today- hope you have been resting and seeing family- and remissing (not a real verb it would seem) xxx

Good evening people making, elephant eating biscuit. I an truly hoping and praying that today has remained bright and breezy for you. Stay strong x

Hi :-)

I had an odd but rather lovely day with a visit from my family doing homework and spelling practice, cutting the kids nails and generally being domesticated.

Then when they went home we turned on a skype window and had dinner together over the internt and I put them to bed virtually. It was weird and sad to see my house but rather lovely.

I just need someone to make me a robot body now :-)

I am full of fears that the chemo isnt working and im going to be one of the small numbers who they cant get into remission at all. There is no reason to think this but its almost as if the closer I get to thinking I can survive the bone marrow and be cured.... the more my brain throws up these fears that I will never get to that stage and I will die first. Almost to protect me from the inevitable crash if I am to hear that bad news. I even started scripting in my head how I would break the news on facebook that we were going to a palliative aim rather than curative.

Now thats not very positive is it? Bad brain. Naughty brain. Yet the fears still creep in unrequested.

Oh biscuits. It is normal to have fears and your brain is processing them as hard as it can. Try to think of the bad thoughts as like cars driving past you. You can note them but you don't have to jump in.
So glad you had a lovely family based day. Must be completely weird to be skyping to your house.
You're up late - try to close your eyes and get some sleep and then you can tick off another day.

Fears are twice as bad at night - must be especially so when you're stuck in hospital, and don't have anyone on hand to share them with. And there's nothing else going on to distract you from your thoughts.

Wish I could give your brain a good talking to!

Good you can be part of everyday routine back at home, even if only remotely - for the moment. I pray that soon this will all be a horrible memory for you, although no doubt in someway positive, because you'll never take the simple things in life for granted again. Probably many of us here have also learned that from your thread - it's certainly made an impact on me - wondering how you're doing at different times of the day - or night, when I can't sleep!

Hope you have another lovely day. x

Morning Biscuits, glad you had a nice domestic time yesterday, I bet your boys really enjoyed the novelty of the Skype Mummy.

Hope you managed to quell the scary thoughts and get a good night's sleep.

In case I've misunderstood, is the aim with chemo to get you well enough for a BMT? Or are they already looking for a match?

How is Mr Biscuits? Do give him our love.

Morning biscuits, so glad you had a lovely family day yesterday.
I hope you got some sleep in the end?
When you wake it'll be a new day, a day closer to home hopefully. You can do this, you are doing this. I have everything crossed for good news, I don't pray but am sending many many positive thoughts and wishes.
X

Hi biscuits. Just popping in to say good morning

Try to stop listening to brain when it's being 'naughty brain', biscuits. Many fears are borne of tiredness and loneliness. Ignore, ignore. Keep thinking of the here and now; just "be" in the present moment & try not to think too far ahead. If you do glance ahead, think positively. Remember the elephant! One bite at a time! You can do it - keep on going.

So pleased you got a taste of domesticity. I regret all the times I found it mundane; it's the stuff of life. I appreciate it all so much more post-my own hospital experience. I hope you get much more of it, and hopefully soon back in the warmth of you own home.

Thinking of you...

Brains are naughty things but not as naughty as damn leukaemic T cells!

The idea as I understand it is they have already tested my brother and sent to the bone marrow register to find a match and we are waiting to hear about that......but...

The bone marrow transplant is not the curative procedure.

What the transplant does is increase your chances of surviving the extremely high dose chemotherapy that they can only give you IF they have extra stem cells that match you to restore bine marrow function after irradiating and chemoing it into deep submission.

So before the transplant it's several months of intense chemo to kill of the leukaemic cells. If they manage and I'm remission they give more and different chemo to seek and destroy any remaining cells they know are probably the but hiding. Only after that and if they have a transplant to give me afterwards will they give the ultra high napalm chemo. But it's a bit like reinstalling a computer operating system. You don't press restore factory sessions unless you know where the boot up disc is!

Daddy biscuit is struggling practically and emotionally but I am so so proud of him. I am doing all I can from here but it's very limited and he has no time to process what is happening so it is taking him longer to get to terms with.... Well as much as you can get to terms with all this ever...

The imbalance must be frustrating; he has no time to think and mentally catch up, you have far too much time to think.

FWIW I think the dark thoughts are a Darwinian way of planning for trouble (like a mental rehearsal of what to do if wild animals attack the tribe). Bit redundant in your situation though - hopefully it will wear off a bit.

It sounds like you are settling in for a treatment marathon rather than a sprint. Will you be able to arrange more distraction? Even do a bit of remote work? Or is 'bandages' in your NN a clue to your job?

Goodness, Biscuits, that is a lot of treatment! Never has the bite sized chunks been more appropriate- its goid to know there is no fast fux but you need to be able to take each day at a time. Each chemo is a step closer! Remember we are always here.

How bittersweet for you to be able to see your house, although I'm sure it would have made the kids' night. Hope you get the chance to go this as often as possible.

Hope your husband manages to get the support he, too, needs both practically and emotionally. xxx

Only started reading this at the weekend.What a remarkable woman you are Biscuits.My medical history prevents me from giving blood but both DC's donate and are on the bone marrow register.They're both in their 30's.For my part,I'm starting a 9 day Novena which is a prayer said after my daily Rosary.I know that you're not Christian but you seem very spiritual and we all believe in one God.Right;enough religious stuff.Best wishes to you and your lovely family. Mx.

Yikes- read that back and the many errors make me appear somewhat drunk! I am not, promise!

Thanks for explaining that, Biscuits. When do you think you'll hear about your brother?

I'm too old for the register and have been asked to cease and desist donating blood due to terrible veins, so am instead sending unstinting good vibes.

I am also too old for the register, but give blood.

Cheering you on, Biscuits, but I realise you can't be cheerful 24/7 - no one can. Weep if you need to & then blow your nose & carry on with looking after your lovely family - even if it is by Skype.

I may post sporadically but you are in my thoughts regularly.

Hi biscuits,

Just reading about your understanding of transplant. A stem cell using your own cells would be as you described a way of giving high dose chemo without killing you. An allograft ie. a donor transplant potentially has an effect called graft versus leukaemia, the donor cells/immunity would hopefully recognise any 'naughty' cells and kill them. It's a riskier process as the donor can attack other parts of you, it's called graft versus host and causes bad skin & other issues. A related match has less risk of this reaction than a non related, but the process of a donor transplant can be curative. I had an allograft/donor transplant, I could feel it clearing the remaining cells/glands as my new blood counts rose - weird!! There are some good documents about this out there if you want links sending. Hope your doing ok?

Yep that's the plan..... Allograft for both benefits.... Hopefully graft vs leukaemia effect and not graft vs host :-) and links very gratefully received! I'm lucky to have a biology background so have been working my way through research articles.... Is fast moving stuff isn't it!

And good news today.... Excellent news that has made me really happy.

There is a virus that can cause this type of leukaemia and this particular subtype only. It is a bit like HIV and we are still learning about it. But my results finally came back today and I don't have it! Which means this is just bloody bad luck. No unnoticed needlestick at work or poor choice of a previous boyfriend.... Just damn bad luck. Not my fault in any way at all...... And most importantly.......... No risk that my kids have a virus that could give them this awful disease. The greatest relief a mum can have.

Thank you for the prayers maras... I agree and am so grateful for mosques and churches and people of all faiths and none who have told me they are sending prayers and positive vibes. X

I should hear about my brother in the next couple of weeks..... A 1/4 shot but would be amazing if he was a match. I'm not pinning my hopes on anything. Gotta get into remission first. Yep biscuits for the crumbs down my sofa on mummy days and bandages for the other days ;-)

I love you guys x

The greatest relief a mum can have.

Probably what I said is that the BMT is not the only curative procedure. It has an effect with the chemo.... But also allows for much higher chemo doses. Blondepip explains it better from first hand experience