Needles and Neutrophils: The Hobnob Chronicles

[biscuitsandbandages]

Four weeks today I woke in my own bed with my 8 week old daughter in my arms and waited for the inevitable sounds of approaching 4 and 6 year old boys. I had everything I had every dreamed of. Life was difficult and tiring but we were getting there and I had plans for the summer and dreams for our family's future together.

Twelve hours later I was on CCU plugged into a monitor with fluid around my heart secondary to a diagnosis of adult T cell acute lymphoblastic leukaemia. I've not been home since.

Statistically my chances aren't great but statistics don't apply to individuals and leukaemia hasn't met me before. My personal survival statistics calculated by me and based on stubbornness, amazing support from family, friends and my mumsnet backup crew and the healing powers of 3 small children are 100% and I won't accept less.

I have superpowers. I have grown three entire human beings. Piddly little leukaemic cells haven't got a hope.

But.....at times I am very scared. This should not be happening to me. It's was not how I planned to spend my maternity leave. My precious year when I was just going to be their mum and nothing else.

This is my second thread but I'm not going to link back as I'm moving forward. Thank you for moving forward with me.

Biscuits x

Biscuits you redefine roller coaster! Can't post much as am traveling but am thinking of you.

Thinking of you biscuits, hang on in there. It's awful when the goal posts move. But you can do this, you are doing this.

Another sorry to hear about the setback although Deserts words sound very wise & I'd definitely second you writing a book!

The plan is sounding a bit more sensible now I've got my head around it. There have been tears and quiet tantrums but I have something to focus on and a particular reason not to get ill this week of all weeks.

On Friday I'm going for an appointment at the transplant centre to discuss things a bit and apparently there are potential donor matches (matches! Plural!) which gives a little hope.

I have a really annoying pain in my jaw and the fluid around my heart still hasn't gone on the follow up scan today which is worrying me (its stable but it's been two months) the problem is main treatment is antiinflammtory drugs.... Just the sort I can't take when my bone marrow is beaten into submission.

Baby r came for a visit and have been watching videos kind friends posted of Bs sports day, very important when you are 6. W had quite a behavioural blip the week before I came in but one thing I did the day before, despite feeling quite unwell, was spend some one on one time with him cuddling and talking about things and he hasn't had a bad report since so hopefully turning a corner there. Being 4 is hard and very hard if you are a big brother for the first time and then suddenly your mum is unwell and has to go away.

I've had a quiet day today but I will get back on the horse!

Oh and what I wouldn't give for a cheese and apple sandwich (something neutropenic safe I found when I was home) it's not salad. It it has a crunch and I can eat it if peeled.

Mr biscuits is going to try and bring one in tomorrow. Hospital stodge is getting me down and no fridge in this room so I'm really limited.

Matches plural?! Wey hey

Well there's some good news! Now you just need to get yourself transplant ready (why does that make me think of plucked chickens?). You know you can do it.

(Lots of offers on mini fridges at the moment, thanks to footie - loads of them in Sainsburys. How snippy are the NHS about their electricity? )

'transplant ready' isn't sounding any better with time. Is it as soon as you get your remission and a match?

Hi biscuits im still reading your story and sending best wishes. Great to hear about your potential matches. Not so great to hear about the nursing mistakes.

I saw a hobnob flapjack today when buying food for a picnic and I thought of you and how much I take my own health for granted.

Is your hospital room ok in this humid weather and not too warm? Its been thunderstorms every day this week so far here. Perhaps mr biscuit can get you a fan? Mr biscuit sounds fab in all your posts, practically chocolate covered in fact!

Matches plural?! Good news!
I watched videos of 6 year old DS1 doing sports day too. Came last in everything with a big grin on his face.
Saw a programme with Nigel slater about the history of biscuits the other night and thought of you. Stay stale!

Biscuits, sorry to hear you missed sports day as know you'd been looking forward to it, but great to hear the good bits of news, that you saw your son on video, at least, and that there are potential donor matches (plural). The rough with the smooth. You're doing brilliantly and continue to be an inspiration to so many of us.

To borrow a phrase others keep using on here, the significance of which has just dawned on me (d'oh), stay stale.

Good luck tomorrow and hope the donors are perfect matches!

So glad things are moving forward for you - love your donor matches! You'll be there next Sports Day - use your energy where it's most needed at the moment. Sending you love and lots of positive vibes!

Matches plural is brilliant news!! Keeping everything crossed it all goes according to plan and you are heading down the transplant route!

Stay stale Biscuits, and you too Weebarra xxx

Matches!!

Delighted to hear there are matches!!!! This is going to happen! Hope the annoying jaw pain goes- and before you have a well deserved cheese and apple sandwich. Looking forward to hearing how you get on x.

Did you get your cheese and apple sandwich biscuits?

Tomorrow's meeting will be interesting - multiple matches sounds brilliant.

Hope your neutrophils are ready to start making a come back now.

Xxx

I love your posts biscuits you are so very determined...such a rock for your lovely family. Good luck & I hope you are home soon.

Brill news on the 'matches' BTW!! All fingers crossed!

Have just devoured cheese and apple wraps (he thought would be safer than sandwiches and probably right) , cuddled baby and started introducing mr biscuits to series 1 of Babylon 5!

Must remember these days I have are already time bought by the chemo and I can't sit moping. I have to use them properly. It's been two months. If there was no chemo I would be dead in all probability. But there IS chemo, it works, it's free in the uk and I've had nearly two months of it almost every day and am still standing!

biscuits I have been lurking and actually have decided that is rather rude, so wanted to say hello.
And thank you for being so generous with your feelings and your time. I think you are a tiny bit fabulous.

God no norks, thank you all for listening to my rambles. It feels better to get it out in a semi coherent manner when sometimes the alternative is rock in a corner ads cry or just lie and look at the wall and give up. X

I read your post and started to sing!

You could never know what it's like
Your blood like winter freezes just like ice
And there's a cold lonely light that shines from you
You'll wind up like the wreck you hide behind that mask you use

And did you think this fool could never win
Well look at me, I'm coming back again
I got a taste of love in a simple way
And if you need to know while I'm still standing you just fade away

Don't you know I'm still standing better than I ever did
Looking like a true survivor, feeling like a little kid
I'm still standing after all this time
Picking up the pieces of my life without you on my mind

I'm still standing yeah yeah yeah
I'm still standing yeah yeah yeah

Not bad words huh!

Great tune Swex! Good singing too!

And it's Behindlocknumbernine to whom I should have attributed the "stay stale" mantra. I must admit that I didn't completely understand what it meant until I looked it up. (My only excuse is that I'm not from round these parts!). Anyway, for those who didn't know, apparently it means to tell the person not to change their personality or attitude, in the same way that stale bread is rock hard (stoical?) and unchangeable. I hope I've got that right? If so, it applies perfectly to Biscuits.

Biscuits, as ever, great attitude. I reckon everyone is living on borrowed time but for some of us it is perhaps less palpable? A great reminder to enjoy and "be" in the present moment, as that's all we really have and none of us can really know what's to come the future. That said, I have great hopes for yours! And with an attitude like yours, I'm as certain as one can be that you will have many more happy "present" moments to spend with your family and enjoy life's little comforts and joys, like apple and cheese sarnies

Have been away & just caught up with the last 2 weeks or so. Sorry you missed Sports Day but am so thrilled to hear about the matches. That's great news.

And it's lovely to see you've still got your fighting spirit, biscuits.