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

Lol.. I will continue to grump on then :-)

No I have some wonderful haematologists and access to advice from the people, at he top of the ALL field (I have been freed 2nd and 3rd opinions if I want them but seems a waste to travel when my consultant at the transplant centre is willing to liase with them anyway)

It's just that none of them are particularly cuddly :-) I an be honest with super transplant guy but the others start to look panicy if I admit to anything other than 100% emotional robustness.

Can I just say I'm so lucky. My baby girl is sleeping next to me all snuffly and snuggly. She is 5 months tomorrow. I've had leukaemia for 3 months now, more than half her life and when I was diagnosed I never thought I would live to see her sit up, reach for toys, try food and babble at me (though she prefers to growl and stuff my fingers in her mouth)

Hope tomorrow goes ok biscuits, I'll be thinking of you.
Hard to believe it's 3 months already. x

Hey Hobnobs. I am glad that you have had such a lovely weekend with your family. All these precious moments will give you strength for your treatment. The next round of chemo is to beat that bloody bone marrow into submission to prepare your body for a successful transplant. It is carefully designed to hurt the cancer much more than it hurts you. I am sorry you are going through so much, you should be very proud of your strength and forbearance.

Biscuits, not hobnobs. Sorry!

Dearest Biscuits,

I am so sorry that you didn't get the news you were hoping for and that you face another tough round of chemo. I can't imagine how tough that was to hear or how hard it must be not to fall into despair. You face a new leg on your journey, longer than hoped for but still with the same destination in sight. Know that we will be with you every step of the way and while our hugs may be virtual they are still real because of the love they come with. Take care xxx

Dear biscuits what a huge and unfair and bloody big mountain to climb. Know that we are all holding you in our thoughts and willing you on. I hope that this thread is a place for you to let out your feelings and rant about anything.

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.

That's you, that is ^

Enjoy those healing snuggles.

xx

Yep, you are all right.
I have to just keep going.
Have kissed and waved the crumbs off for the day and now to potter about until its time to go in.

I wonder when I will sleep in my bed, walk around my house and sit on my sofa again. Will I?

You WILL sleep in your bed again. This is a temporary diversion on the road to your cure. It is a pain, it is frustrating, but you will get to your goal.

Biscuits, keeping you in my thoughts. And Mr Biscuits and the crumbs too.

Did they give you any indication how long this round will last and how long you will need to be in for? What can we send you in the way of diversions? Please please do ask, pm if you prefer. Happy to post a 'biscuit-activity-box'. xx

Just want to run and get my kids and barricade us all in the house :-(

I know that wont make this all go away.

It will be 7 days of drips but cant go home until blood counts recover which usually takes 24/25 days but can be over a month.

I wish we could make it go away for you

Still thinking of you Biscuits but can't post often as little Internet access at moment. Have just caught up on your story- yes, it's shit but we all have everything crossed that this bout of chemo is the super strong stuff that can prepare you for transplant. Stay strong and rant away x

What Swex said.

I really do wish we could make it all go away.

We can hand hold and provide a safe space for ranting!

As ever, one step at a time, dear biscuits. You are doing so well. Keep going, strong lady. Stay stale.

I have to go in at 2
Just wandering around the house.

ARGH!!!!

I don't WANT to!

Right.

How are you going to spend the rest of your time at home? Torturing yourself is not a permitted activity.

Is there a RL friend you could call to come round for a coffee?

Of course you don't biscuits - and it's beyond cruel that you have to go through all of this. But you will because the reward is so great - seeing your DC grow into adults, and having a wonderful future with Mr. B.

But scream now.....you're quite entitled to!

Sending love. x

sending love from here too xx

Sometimes the 'waiting for the inevitable to happen' is harder than the reality of the inevitable when it actually happens. If that makes sense? That said, I feel your frustration about having to go back to hospital understatement of the year It'll be ok, though, biscuits. You'll feel better again soon.

Thank you.
I've tidied, I've eaten, I'm going to unload the dishwasher.
Mostly I'm just crying and shouting but there is something therapeutic about finally being allowed to. The house is empty, no one to upset and I won't be able to once I'm on the ward.

I just want to live, to live my life, to have a break from the drugs and the pain and the needles, the restrictions, the hospital beds the relentless hot glop, the separation, the loneliness, the fear and frustration.

OH bugger it biscuits. Here's hoping that this 25 days is they key to buying you decades ahead with your dh and dc's. Be strong, we're rooting for you.
It's truly shite. Be however you need and do whatever you need.

Still thinking of you here, still sending positive thoughts to you, still believing totally that you will get through this.

You are doing so, so well. Stay stale Biscuits.

Oh and definitely come on here to grump as much as you like.

Biscuits, it's all so horribly, horribly unfair.

Every hideous, awful moment of the treatment ahead is a moment closer to you coming home and getting on with living your life.

Sending love x

Hi Biscuits

I've been lurking on your thread but not posted as I had nothing new to say and I still don't but wanted to add my words of encouragement. You really have been dealt a shitty hand but you are coping amazingly. There is no choice but to keep going, one day at a time.

I will be keep everything crossed for you and following your story til you get better. No other outcome is allowed!

Good luck this afternoon and for the next few weeks. Hang in there x