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Original poster

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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Thread gallery
7
Tootyfilou · 08/07/2014 22:21

Think of you every day biscuits, hope today has gone well xxx

ssd · 09/07/2014 10:16

hope yesterday went as well as it could biscuits, you are one step closer where you want to be

am thinking of you xxx

Princessdeb · 09/07/2014 14:16

Dear Biscuits,
I have been keeping watch and thinking of you but not posting much. As you said sometimes you don't need reminding (as if you could forget!). I hope yesterday went as well as possible and that you receive more positive news on Friday. Thinking of you and yours. Take care xx

Original poster
biscuitsandbandages · 09/07/2014 20:04

I hurt.
Ive had enough.
I have nothing positive or cheery to say.
The antibiotic drip they gave me yesterday is making me feel sick despite tablets.
I dont even know when im getting the results.
Ive had enough.

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OrangeyTulips · 09/07/2014 20:09

We're here for you Biscuits. All across the UK and further afield. Take it slow.

BehindLockNumberNine · 09/07/2014 20:13

You don't have to say anything positive or cheery. You are not here to entertain us.

You are however very much in our thoughts and if we could all take a little piece of the burden you are carrying then we would!

Keep your head down, keep moving forward, one small step at a time.

You can do this. You are doing this. It is ok not to be cheery or positive. Just keep going.

Stay stale xx

OrangeyTulips · 09/07/2014 20:15

It must be very frustrating not to know when the results are in. At least yesterday has now gone. Can you contact them about the drip still making you feel sick? I thought of you all day.

LEMmingaround · 09/07/2014 20:31

I have lurked on your threads and think of you often. You are an inspiration with your strength and positivity. But its allowed to feel scared and angry and like you have had enough. Hoping for good news for you this week x

ajandjjmum · 09/07/2014 21:38

It's ok to feel shit - the stress and the treatment are bound to knock you around. Just know we're all still thinking and praying for you and yours, and hope that in some small way, that makes you feel brighter. Although you're quite entitled to say you don't give a monkeys at this moment in time!
x

Fairyfellowsmasterstroke · 09/07/2014 21:50

Another lurker stepping forward to offer support.

You may not realise it but you're proving an inspiration to many of us.

I've got the usual work and family problems which, at times, threaten to get on top of me. But then I think of what you and your family are not only enduring but actually getting through (and yes, that is how I see it) and I feel humbled.

When you started your thread I bet you never knew that you'd have so many people who not only worry about you but also admire and gain strength from you.

You have my support and respect Thanks Thanks Thanks

Princessdeb · 09/07/2014 22:12

Dear Biscuits,

You are absolutely allowed to be fed up, pissed off, angry and scared. Your strength has astounded me but sometimes all the positive self talk in the world isn't enough to lift you. Know that this is a safe space for you and when it all feels too much and it feels like you can't put one foot in front of another then you can come here and tell us that especially if it is difficult to say that to your wonderful family.
Nearly 15 years ago I read an article in The Guardian that was so powerful that I cut it out and have still got it today. It was about courage and argued that bravery is not about not being scared or managing great feats it is often simply opening your eyes in the morning to a day that may be the worst of your life and getting out of bed anyway. Right now you may not feel like you can do this, like it is all too much but the courage you are displaying is astonishing. And on those days when you really cannot get out of bed and face the day (whether physically or metaphorically) know that we are here to help hold you up.
With love xx

Original poster
biscuitsandbandages · 09/07/2014 22:31

Thank you.
Thats what its like sometimes.
Waking up to another day, I dont even want to say in this nightmare because often there is at least one child snuggled up or standing at the door asking if they can come for a cuddle. My life is wonderful..... except for the leukaemia.
Getting up, taking my tablets, choosing to eat and drink (and I have to admit sometimes I gain 'control' by choosing not to but it only lasts a few hours before I remember I want to live and stop being stupid). Every little normal act can sometimes feel like resistance and sometimes feels like a prison cage.

Im going to call them tomorrow and find out what is going on. The drip is a monthly thing to protect against a type of pneumonia. I havent haf it before but man it is vile.

Baby R keeps headbutting my sternum when she triee to get to sleep. Bless her she doesn't know it hurts.

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Original poster
biscuitsandbandages · 09/07/2014 22:35

Should probably explain. They couldnt get a good sample from my pelvis so ended up taking it from my sternum instead. My 6 year old was very impressed by my number of war wounds this morning and showed me the plaster on his knee where he fell over in the plqyground

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HypodeemicNerdle · 09/07/2014 22:47

So they poked you in 2 places and stuck a drip in you, no wonder you are pissed off and fed up.

Can you get a couple of flannels or similar to buffer baby R's head so it's not quite so sore or your sternum?

Aethelfleda · 09/07/2014 23:42

((((Gentle non-sternum-bashing hugs)))))
Jeepers, that sounds sore no wonder you're teed off.
Lovely to hear the petri dishes are providing cuddles.
Vent away, this is your thread you have so many virtual friends on here, there is no need for trowelled-on make-up and pretending to feel fantaaaastic.
Hope the nausea improves and if not, badger them for different tablets, there are tons of anti-sickness pills, maybe a different one will work...

Swex · 10/07/2014 01:11

Ah b. it is okay to RAGE. I would be. And you are immensely brave to keep opening your eyes and get up. Your sternum sounds so sore - what a hideous experience. Xxx

Original poster
biscuitsandbandages · 10/07/2014 09:41

Argh! I am so ANGRY!

This is not fair.

I'm too sick to have baby r at home today, can't find the motivation to label the school uniform or do her scrapbook as both things make me cry. What a waste of a day. I just want to shout and rant and cry.

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ajandjjmum · 10/07/2014 09:47

Be angry - it bloody well isn't fair. Is there anyone around who can help you?

Original poster
biscuitsandbandages · 10/07/2014 10:00

No :-(
Though to be fair I would probably bite their head off anyway.

If I can pull myself together and keep some food in I could pick her up at lunchtime but I'm not sure how well I would cope and she is safe and happy at nursery at the moment.

I'm just not a good mum to any of them right now.

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Florabeebaby · 10/07/2014 12:09

You are a good mum, you are just going through some serious shit right now. To put it bluntly.
Thinking of you here in the south on a daily basis.

Aethelfleda · 10/07/2014 13:04

You are a bloody great mum, but you need to look after yourself as well. If the day is spent looking after yourself physically then that is valuble too. From the point of view of your kids, every single cuddle, every smile, every tiny interaction is a positive thing. Just in itself. Focus on every thing being a bonus extra rather than comparing with how it was. When you feel able, sure, pick up little one, but if you can't then no guilt is allowed. Anger is natural- this is very unfair and you're doing such a job with this- but leave off the guilt, you're being too hard on yourself. Flowers

Original poster
biscuitsandbandages · 10/07/2014 13:20

All I'm doing today is crying.
Not very productive at all.
Loads of useful mummy things I could be doing instead but I just keep crying.
I want to go and get my youngest two from nursery. I will buck up when they are here, I always manage somehow. I just know as soon as I do the nurse from the hospital will call and my mobile reception is rubbish. I need to know when I'm going to get these results.

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LEMmingaround · 10/07/2014 13:44

Can you call them? At least to tell them not to call at pick up time and get them to chase the results

Original poster
biscuitsandbandages · 10/07/2014 14:00

Yeah I need to do that. I tried at 1pm before the ward round (big weekly one today) but no answer and I'm a bit scared of interrupting that. They won't give me the results over the phone but I should have an apt to go in to talk them through. They are important. I wish they would just give them over the phone to be honest. We have done the breaking bad news thing a few times now and all we are finding out is whether its more really bad news or just a little bit more bad news.

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ajandjjmum · 10/07/2014 14:05

I think crying is productive biscuits - although it might not feel so at the time. Get your tears out of the way, and goodness knows, you're entitled to shed a few! Then you'll have your DC around, and know that'll buck you up. They will know how much you love them, and that is the most useful and important mummy thing you can ever do.

Sending love. x