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

Hi hobnob, hope you're being good. :)

Hello Biscuits, just popping in to say I'm thinking of you and that I hope you're doing OK.

Morning biscuits. Hope you're doing ok?

Superking, you are indeed a lodestar doing this to help other stars like biscuits I ought to have mentioned earlier but forgot to do so in my haste to post while I had a hands-free moment! I'd like to help but fear my Crohn's condition would mean I'm probably not eligible . Bravo to people like you.

Hi Biscuits. Thinking of you and hope you have a peaceful weekend x

Hi biscuits, hope you are feeling better and you are getting good care.
Thinking of you loads too xx

Hope you are doing ok OP.

Thinking of you hob nobs xx

Hey biscuits,

I know you've graciously refused offers of help up to this point, but do shout if you need anything. Chances are that someone is near to you.

Hope things are going okay.

Xx

Wow? Where to start!

Superking
.. what a ????????? star!

Thank you and I do hope it's you but so glad uoi can give some one a chance. Its just so amazing thank you!

Such a lot has happened but ive not been well enoihh to report in. Next time will at least put a blank post so you know alive. Should have thought of that before.

So I got moved to a side room on the haem ward in the early hours of thuesday morning. Very relieved indeed to be back 'haem sweet haem'

By Thursday morning I was less happy as the iv antibiotics clawed out my bowel until there was nothing more to take. Agonising pain npt absorbing my tablets as they travelled through top fast and such sickness only ondansetron controlled. Couldmt eat or drink anything and had to have my chemo anyway

But it also hit the infection and ive not had a fwvwr since then and my infection markers are starting to improve. I slept ok Thursday still witj iv fluids running as they had been since tueaday and woke on friday feeling much better.

Friday morning I negotiates some drip free time for a shower and change of gown and risked half a slice of toast.

They set up my platelet transfusion and I started to reply to some pf the messages from people over the last few days.

Towarda the end (about 25min in) I developes a sry cough and felt very tired. I decided to get back onto the bed from the chair. A nurse popped in by fluke to check my obs. O told her mu xhest wqa tight and o couldn't breathe and then I watched a nettle rash develop om my arms and legs and everywhere in between in front of my arms. O tols her I was developimg a severe allergic reaxtion. She said she would bleep the doctor. I told ww didn't have time. By now I wqa drowsy and my lips were swollen and eyelids so swollem I could barely open my eyes. So I told her he must have written up iv piritom before the transfusion and I needed 10mg now and to stop the transfusion. So long story short, I had ananaphylatic reaction. Was minutes at most from nnewdingr adrenaline but am now ok.

So they gave me the next set while I was coveree by the piriton and by then steroid iv.

My platelts came up to a reasonable level to do an LP which we had to abandom as a failure aftee 5 painful but unsuccessful attempts..

So I could have just left the platelets anyway.

Had two units of blood overnight and a quiet day with a gentle introductiom to eating and drinking today.

I wonder what tomorrow will bring.

And as you can see, the numb fingers are really starting to affect my typing and typos. Sorry!

Oh biscuits it's great to hear your voice!

Sounds shit Biscuits. Hope tomorrow is brighter.

How bizarre (and how lucky) to be able to identify your own anaphalaxysis.

Fingers Xed for tomorrow x

It was weird. . It felt like it was gradually dawning on me but in reality it was apparently all sorted in only a few minutes. Really scary and floaty at the same time. My arms were awful jist. Lookes like they belonged to a michelin man who had been burned then chucked in a nettle rash

Scary - I had no idea it was possible to get a severed allergic reaction from a transfusion . Thank goodness you're ok! And yes please to the odd blank post if you're not well enough to 'say' anything - think off it as the MN equivalent of a brief smile and bit of eye contact . Still sending those positive vibes.

How scary for you! I hope today is a less dramatic one for you!

You're on a haem ward and she did not recognise anaphylaxis???!!!! Wanted to BLEEP? You see her again, do give her a short lesson in hitting the f***ing red button if she's out of her depth, will you?

Glad you're better today. Hope you get lots of cuddly visitors if allowed. Lots of love.

Crikey, Biscuits, what a scary few days!! I cannot believe the nurse...
Glad you were on the ball so to speak!!

and for you.

Stay stale xx

Wow, good job you have medical knowledge eh. That's scary stuff. Well done for keeping calm enough to let nurse know....

Oh god, so sorry biscuits. You simply do not need this. You poor biscuit! And the nurse's - erm - complacency (? a euphemism at best!) just beggars belief.

I'm sure you are already doing this, you strong & sensible lady, but try and see it as all part of the same bloody convoluted (neutropenic sepsis-related) setback. Praying for a
an upward trajectory for you to start, like, IMMEDIATELY!

I hope you are feeling ok psychologically despite the physical battering you're having to endure.

Hugs to you, and lots more of these:

Great to hear from you although sorry for yet more shit you're having to deal with. Well done for basically sorting yourself out though - has the nurse been spoken to? Big hugs.

Biscuits,

Wow! What a rough time you have had! Glad to hear you are feeling a bit better and well enough to type. Hope today brings food and rest- and like mumsfret says, an immediate upward trajectory.

Oh my god biscuits. So glad you are ok. Please educate that nurse on anaphylaxis. Scary. Hope you are feeling a bit more human now.

Oh dear Biscuits What a rough ride. Glad you were are able to update but keeping us in the loop is not at all important in the scheme of things. Your recovery and treatment comes first.
Thinking of you still.