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Needles and Neutrophils: The Hobnob Chronicles

999 replies

biscuitsandbandages · 11/05/2014 07:15

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

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biscuitsandbandages · 27/06/2014 08:33

Im going to the transplant centre again today. They will tell me if im in remission or not as all the results from this weeks tests have been faxed there.

I havent told any family or friends. Mr biscuits is taking me but I dont want anyone asking me whar the results are.... just in case

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Fideliney · 27/06/2014 08:42

Crossing everything for you.

ajandjjmum · 27/06/2014 08:59

Hope today brings you the news you need. Smile

Mumsfret · 27/06/2014 09:02

Honestly biscuits, you'll be in my thoughts all day. Stay stale Thanks

biscuitsandbandages · 27/06/2014 09:08

And I have zero neutrophils.
Zero.

So the right decision from biscuits but very annoying.

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Fideliney · 27/06/2014 09:14

At least it's proof the chemo was good stuff.

Fideliney · 27/06/2014 09:16

A sudden resurgence would be nice though if you are listening biscuit's neutrophils.

Fideliney · 27/06/2014 09:19

(DH asked me what I was doodling yesterday. I got a very funny look when I absentmindedly replied neutrophils for someone called biscuits.)

Swex · 27/06/2014 09:35

Masses of luck and prayers. I'll be thinking of you

Mama1980 · 27/06/2014 09:37

Good luck today, will be thinking of you x

allisgood1 · 27/06/2014 10:20

Best of luck for today biscuits. Thinking of you! And naughty neutrophils!!

Legionofboom · 27/06/2014 10:20

Thinking of you today Biscuits and keeping everything crossed for the best possible news.

Panicmode1 · 27/06/2014 11:20

Everything crossed for you today Biscuits. Xx

Nocakeformeplease · 27/06/2014 13:01

Everything crossed here too for good results today. Stay strong my lovely xx

Aethelfleda · 27/06/2014 14:13

Praying for you biscuits xxxx

trinners88 · 27/06/2014 15:30

Thinking of you Biscuits.

biscuitsandbandages · 27/06/2014 17:14

Frustratingly I have to have another bone marrow biopsy and the wait for all the results will start again as my marrow hadnt recovered enough to interpret (well we know that now dont we given I have no neutrophils! )

Have to wait for counts to rise again.
Stuck in limbo. Scary limbo.

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ajandjjmum · 27/06/2014 17:18

I'm so sorry Biscuits - but hopefully those neutrophils will start to behave soon, and things will pick up for you.

Are you at home now, or will you be in hospital this weekend?

trinners88 · 27/06/2014 17:20

Gosh Biscuits I had hoped you'd hear today. Channelling positive thoughts and prayers.

StillProcrastinating · 27/06/2014 18:37

Keep going Biscuits, you're doing an astonishing job of seeming to keep it all together. It's just another hurdle to jump, sending lots of positive thoughts x

Mumsfret · 27/06/2014 19:48

Argh. That's very frustrating, biscuits. But on a positive, you know what they say about no news being good news...

It could have gone one of three ways today. I'd almost forgotten how common is the third way (inconclusiveness) when it comes to hospitals and treatment! Limbo certainly brings about an uncomfortable uncertainty but it's something you get used to - even good at - when it comes to this game. Limbo does not extinguish hope. And let's not forget, "where there's hope, there's life. It fills us with fresh courage and makes us strong again".

Do you think it'll be the nice Dr who's gone out of his way for you who'll be doing the next BMB? I hope you achieve more certainty (of the positive variety) soon Thanks

biscuitsandbandages · 27/06/2014 20:04

No it will not that be that doctor.
I like him, he is funny and kind.
But he has massacred me twice now on last experience it turns out he even tried giving me extra midazolam to stop me screaming.
I think the memories of the first time with hm, his voice, how he does it without telling me what he is doing means I fight the sedation.

My second bone marrow was someone else. My husband was in the room and apparently I chatted quietly and didn't whimper. I also didn't need any pan relief afterwards where now I'm still in pain and it was done on Tuesday.

I will be telling the medical team I will not, I cannot, go through that again. I do not know what I will do if they say hard luck. Probably pay for someone to do it privately somehow. But he is not coming near me with a needle again.

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biscuitsandbandages · 27/06/2014 20:06

I'm finding it hard to force myself to eat and drink. Just sitting in my room on the Internet. It all seems so pointless. Mr biscuits will be here soon. No baby visit tonight. She threw up this morning. Probably just a super large posset but we can't risk it.

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Hazelnut55 · 27/06/2014 20:22

Mumsfret has such wise words, and of course she is right. No news means no bad news, so that is good. Allow yourself some down time, then chin up and face the world. You can do this and you are doing it. Fight, fight fight!

Much love and hobnobs.

magimedi · 27/06/2014 20:39

Stay stale, lovely biscuits, stay stale.

Thinking of you more often than you would realise.

Flowers