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

Hope you are ok biscuits x

thinking of you too biscuits x

Another one just checking in to let you know you're in my thoughts. Hope this week's a good 'un!

Thinking of you too biscuits. Hope you and the little ones are having cuddles at home in the sun.

Thank you.
An amazing weekend which felt like normal life and 'goodbye' at the same time. Eating ice cream on the beach and going on public transport with only minimum fear of infection. That won't happen again for a while.

Tomorrow I'm going in to start FLAG-Ida chemo which looks pretty brutal and certainly stronger than what I've had before. Top ALL person in the country doesn't think my results are good enough so far for a transplant to improve my chances. Have to zap it some more. Alternating between positivity that we have access to such good advice, and what feels like starting to give up hope.

Dearest Biscuits, I know you must be so disappointed not to proceed directly to transplant. This does not mean however that you won't proceed to transplant. I have just looked up the protocol and happened on a blog of someone in London who had ALL and that protocol and is now day 100 after transplant. Stay stale - all is not lost. all my love Orangey

So happy you enjoyed a normal family weekend.

So sorry you're facing another, more brutal, round of chemo. It sounds like you're in good hands, but gosh, what a long hard slog.

Thinking of you and sending lots of stale vibes.

Oh bollocks. I am glad you enjoyed your weekend. I hope the new protocol knocks it for six. Life is a total and utter bitch sometimes understatement of the year

Oh bollocks indeed! But, at least the consultant has said your results are not good enough YET and with a bit more zapping they may well be?
So that is hopeful!!

I hope the next round of zapping does the trick.

Stay stale lovely biscuits xx

Top Man knows what he's doing, so you know that he's right to push for better results - even if it's shit short-term. You aren't allowed to give up hope - there's still far too much going for you, including the best brains in the business, and the might of MN!

Oh Biscuits, bollocks about sums it up. It all sounds so utterly relentless.

Thinking of you and also sending lots of positive vibes

Sorry you didn't get the news you were hoping for biscuits. New chemo regime sounds hardcore.

Gah! That must feel so frustrating and demoralising - really unbearable for you - but they're obviously only suggesting this FLAG-Ida aggressive chemo because THEY have hope it will work and that it'll do a better job than what you've undergone thus far. They simply wouldn't try it otherwise.
You can feel sad/angry/fed up to the back teeth - & indeed it sucks that you have this additional hurdle to overcome - but do NOT give up hope, Biscuits. Your healthcare professionals, your friends, your wonderful biscuit-family - & we Mumsnetters - simply won't allow you to do that.

Good luck with the new chemo regime and so sorry you didn't get the news you wanted today. But the fact that they want to zap you some more to enable a transplant means that they haven't given up hope and nor must you.
Stay stale.

Trying not to just curl up and die but feels like saying goodnight and doing bedtime this evening is 'for the last time'

Started weaning the weean, went down a storm. It's earlier than I usually would but what's the point in waiting, she is formula fed, ready for food and selfishly I wanted to be the one to do it. I videoed it for her. This is shit.

No no no, don't give up hope. There's always hope. But this is a much better place to rant than in real life, so you do whatever you need.

Top ALL man in the country thinks it's still worth doing chemo etc, so he hasn't given up, and neither must you.

What can you be doing to get ready for tomorrow, have you got some distractions prepared?

That's true. Top ALL man says it's worth carrying on and not just palliatively - in pursuit of a cure via BMT.

Do you have support from Macmillan?

Bag is packed, having a final decent meal with salad and spices and things I cant usually eat. In the morning DH will take the kids off to nursery and school and when they come home I won't be there. I've told the boys. Ds1 is very upset, ds2 is more cross with me than I keep crying.

Have a nice Cns at the hospital but she isn't very hand holdy. Did speak to the Macmillan lot but they weren't very knowledgable. I'm a tough cookie to please... Have to be hand holdy AND know chemo and ALL inside out to be able to help me . Stroppy moody cow today arent i.

What would really help is to find a friendly haematologist who will let me cry on their shoulder and who will then tell me it will all be ok, not that the will cure me but that they will keep trying. That's not going to happen.

Biscuits, I've been following this thread. Just to say you will be in my thoughts tomorrow, and I will be sending you lots of strength when you hug your children in the morning and go through your treatment.

You're very much allowed to be a stupid moody caaaah today and forever after if you feel like it.

Is the haematologist at your hospital not very good? Shall we see if we can find you another on recommendation? Would that help?

Thinking of you biscuits, hope tomorrow goes ok xx

I've only just seen this and just really wanted to post to send you massive support and positive thoughts. You are such an inspirational woman.

Oh arse! But at least the new regime sounds like it may work: and that is the "keep on trying" approach that you do want.
Keep the lovely weekend as a finish of one chapter, the next chapter will be this chemo, the next will be a BMT, and the next will be your journey towards remission.
One page at a time, lovely biscuits. You have lots of virtual readers and can shout, whinge and be however you want to be on here. Glad your LO liked her taste of solids!

If chemo doesn't make you feel too god awful, could you do some photobooks? I try to do one a year for DD and DS. They are time consuming and require concentration, but good once done.

How long will you be in for? Does it all depend? Have you found any new apps to stave off boredom? We could probably bombard you with daft ideas if it would be useful. Books, DVDs etc. have you got some nice writing paper?

Don't reply tonight though, keep enjoying your evening at home. (Said in a not bossy voice!)