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

Another day down, biscuits. xx

Great to see you are feeling positive mentally and that lots if people are on hand to give you good practical advice. Take it easy xxx

You don't need to sail through it, you just need to get through it, which you will!

Sorry you're feeling rough though

How far is the hospital biscuits? Are there any patient transport options? Have you a McMillian nurse? They should know.

morning biscuits - sorry about the nausea. My oncologist reminded me that nausea is not necessary and to ask for all the drugs! I had fairly bad morning sickness and yes, it's very similar.
I'm getting used to life with no boobs, doing my exercises diligently! Still pretty sore, especially when it comes to lifting DD, who was 9 months yesterday. Boys are off school today as their school is a polling place, so I'm taking DS1 for a haircut - amazing what you let slip going through treatment!
Have a good day!!

Morning biscuits! Still hard as dwarf bread, I trust! Sounds like the advice is to do/take everything you can to avoid the nausea. You're probably one of these women who doesn't bother with the likes of painkillers, normally, but in this instance don't suffer needlessly - especially if there's another way! Hope you have a day positively littered with good bits...

Good to hear your update, weebarra. That's tough for you having a 9-month-old in the post surgery state. 9 months is a clingy stage in my experience! Good to hear you getting on with it but hope you're taking care of you, too!

Just checking up on you after a few days away. Your body is using all its energy to heal you - nothing else is important just at this moment. Sending love and respect to you and all those here who have done everything to recover their health. x

Hmm a trixkyt tearful day for no good reason. Perhaps im nervous for the lumbar puncture tomorroe. Im not sure but all I know is my brain keeps throwing me down and when my heart helps me up again my brain puts the boot on to get me back on the ground.

"Hello there! Dont mean to interupt but just wondering if you actually realise the implications of this"

"Its fine! Dont worry, one day at a time, im feeling well today and that's all that matters"

"Erm... but you know this is going to kill you right? Maybe not now, maybe not this year but one day it will sneak back in and you will relapse"

"People can live for years, why not me? Ive seen stats for 10year survival and one guy is at 20!"

"10 years? 20? You really dont get how bad this ks do you? Wake up woman! You are hoping for 10 years? You are 34! You have had 40-50 years stolen, your grandchildren, possibly your children growing up"

"I will be the one in a million, stats dont apply to individuals and I wont listen to negativity"

"Oh ffs. Are you brain dead? Ok.. giving up with logic. .. time to start on the emotions. .. feel that? Its fear, pain, heartbreak. NOW you are getting what I mean"

Hmm a trixkyt tearful day for no good reason. Perhaps im nervous for the lumbar puncture tomorroe. Im not sure but all I know is my brain keeps throwing me down and when my heart helps me up again my brain puts the boot on to get me back on the ground.

"Hello there! Dont mean to interupt but just wondering if you actually realise the implications of this"

"Its fine! Dont worry, one day at a time, im feeling well today and that's all that matters"

"Erm... but you know this is going to kill you right? Maybe not now, maybe not this year but one day it will sneak back in and you will relapse"

"People can live for years, why not me? Ive seen stats for 10year survival and one guy is at 20!"

"10 years? 20? You really dont get how bad this ks do you? Wake up woman! You are hoping for 10 years? You are 34! You have had 40-50 years stolen, your grandchildren, possibly your children growing up"

"I will be the one in a million, stats dont apply to individuals and I wont listen to negativity"

"Oh ffs. Are you brain dead? Ok.. giving up with logic. .. time to start on the emotions. .. feel that? Its fear, pain, heartbreak. NOW you are getting what I mean"

biscuits . So sorry you are struggling this evening.

If you can imagine the fantastic advances cancer treatments is going to make in the next 10 years, how different things will be. When I was at Uni in the late 80s, AIDS was a death sentence. Now it isn't thanks to medical advances. So much can be achieved in cancer research while you are hanging in there, buying some time. So much progress will be made. x

Oh biscuits...

I'm sorry, I haven't been where you are and I don't have any real advice to give. But I'm here and listening and my heart is aching for yours.

((Biscuits))

Have you considered giving in to the fear for ten minutes and getting properly snottily hysterical? Holding it in check must be exhausting. Or have you done it already?

Sorry you are having a rough day today, Biscuits. But I agree that if the stats suggest 20 years just now, you can bet that'll have at least doubled with all the advances they will make in your lifetime.

I know a 16 year old boy who had a heart transplant last year. If you read the stats about that it certainly looks as if he has had time stolen. However, he looks to the future with the confidence of someone who can see a long term. I don't believe thus is the arrogance of youth or ignorance, as he can describe his condition upside down and inside out. I think his confidence comes from the fact he has seen what medicine can do- and is confident it will continue to do so. You just need to get through this part and leave the scientists to assure you are here for the great grandchildren xxx

Really sorry you are struggling this evening Biscuits. I follow your thread every day and you are going through so much, I admire your strength and focus. Keep focusing on those good statistics, as one day you can look back and think..."that was me...this is me now!!" You can do this and you will. You must be so exhausted from the chemo and traveling etc...it's no wonder your mind is playing tricks on you. Keep focused...you have a lovely family and a strong support network here on mumsnet. I hope tomorrow is a good day for you all. Good luck with the lumbar puncture too.

For catharsis..

and for endorphins xxxx

You know that talking to yourself is the first sign of madness, and I think you have enough on your plate to add that into the mix

You are doing amazingly well, take one day at a time and use your energies to fight the day to day battle, not worrying about a future which hasn't been written yet.

Stay stale

Biscuits I know those thoughts, I used to do things like flip it and think well there's a ton of people who consider themselves fit & well who will die tomorrow out of the blue, a guaranteed future is nice but actually no one in the world has that luxury they've just not really realised it as we live in such a 'safe' society now. I think I would blow the thing up so big I could then retreat back into my safe space and forget the bigger picture because it was too bigger picture. Not sure if this makes any sense but I would try to remind myself I was safe in the here and now, and that's all any of us have really! And then also comes in the keep this brain busy any which way coping mechanism, watch box sets continually, or read lots, put yourself into a space where you can block it out even if it's just for a while! Have you been prescribed anti depressants yet? They help too!

Oh biscuits - I know those thoughts. I have a nasty type of bc which doesn't have the survival rate of hormone +ve bc (I have the BRCA2 gene). I don't know what the stats are as I refuse to look at them. I am very much trying to do the mindfulness thing! I'm living my life as though there is nothing wrong with me and I have all the tine in the world!

Hope you are feeling better today biscuits

I'm assuming it's another chemo day?

Hope the lumbar puncture isn't too awful today biscuits.

Sorry you've been feeling rubbish. Wish we could take the nausea, pain and worries away! We're keeping positive for you. Hopefully the weekend will bring more joy & less anguish.

Popping in with a hand to hold

Hope the lumbar puncture is ok today

Sending you some positivity today and an unmumsnetty hug

Ah biscuit I hope the heart is winning today...
Masses of luck for the lumbar puncture.
Xx

Good luck for the Lumbar puncture ((cwtches))

Oh weebarra that sucks. Yeah we need a way of wipjng memories.... I wish I didn't know mg prognosis but being a hcp I knew the second they told me my white blood cell result what I had in store.

Feeling on top of the world at the moment though as survived another LP it really hurt this time as they couldn't find the right place then then consultant took over and it was done. Yay only 3 more to go.

So im currently lying flat drinking coke through a straw and listening to my ipod.

And I have 3 days off now as its a bank holiday so we are doing all 5 days chemo over tues to friday.