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're already in bed and sleeping, Biscuits. Tomorrow is another day.

Hi biscuits ,

Hopefully just your body reminding you that you really are supposed to be resting and allowing it to focus on getting better. Maybe the walk was just a bit much, and you can find something that requires less exertion. I guess even if you don't feel it at the time, your body is working harder than normal. It must be so frustrating.

Thinking of you xx

A late one for me tonight, Biscuits, as I can't sleep- but hope you are resting well as I write. Your mood is bound to fluctuate as wildly as your energy. Allow yourself to acknowledge your fears and then know you have every reason and every medical and emotional support to ensure that can allow yourself to face the challenges of each day.

If each of us on this thread could take away even a part of your pain for you, we would. I pray that you have a more peaceful day tonorrow xxxx

weebarra- sending you thoughts and prayers too. Hope you manage to be seen before Thursday, and get some relief. Have you started radiotherapy? Xxxx

Morning. Just a quick hello to wish you luck for tomorrow and chemo restarting. And a hi to weebarra

Oh biscuits, I know where you are. I am currently sitting at the breakfast table with the chaos that is three small children on a school day. If I die, only the oldest will remember me - he is only 6.
On a lighter note - managed to see surgeon yesterday and they drained 1.5 litres of fluid from my breast area.
Radiotherapy starts on monday so they can't continue to drain as it will affect the measurements.

Weebarra. I'm glad you got to your surgeon and hope you are feeling more comfortable.

just to pass on very much love and heartfelt prayers
I have followed your story, just joined, and think the way you continue throughout all the terribleness is just mazing...truly.
You have achieved more by this than anything I can ever imagine
Well done, you special human being

Hugs weebarra x

More chemo today and a heart scan.

They think maybe it's just the position the fluid is in thats the problem. It seems easier than it did on Sunday.

Half term... another week stolen by this evil disease.

Gotta get into remission. Gotta get a transplant. Gotta not die. Im going to be the one that got away. It cant have me.

Great last paragraph, Biscuits! That's fighting talk!

And weebarra glad you have had some relief. Send

Apologies- sending positive thoughts for both of your sets of treatment this week xxx

biscuits - loving the fighting talk.

One of my colleagues is a potential bone marrow match for somebody. He's down the the last 4 and was arranging last week to go for further blood tests. Immediately you sprang to mind. It would be amazing if it was him that ended up donating marrow. He's young, fit and amazed that he might be the right match for someone!

Too true it can't biscuits - the might of MN is on your team!!!

Hope you have a good, peaceful night with your family.

Fight the good fight, biscuits.

And you too, weebarra.

How old are your wee ones weebarra?
My eldest is 6 too. A difficult age to understand all this. My 4 year old seems much less affected. He is still very much at the age of taking every day as it comes whereas ds1 worries about the future.

Hope your day is ok today. When im low I console myself that even if baby r doesnt remember me every interaction I have helps shape who she will be. Same with the boys and the years mr biscuits and i have spent parenting together means he knows my wishes for how they should continue to be brought up so they will very much continue to be our children and my legacy even if im gone. Hard to think about though and even writing that has be sobbing silently in chemoland waiting room.

Today will be a good day inshallah.
I have decided.

Biscuits - DS1 is 6, DS2 is 4 in August and DD is just 9 months. DS1 is a sensitive lad and takes everything in, it's been hard for him. DS2 has a surprising awareness of the situation. He wants my hair to come back ginger like his!
I hope your day is going well!

Inshallah indeed.

Keep going, Biscuits and weebarra.

We are in such a similar position weebarra. Ds1 is my sensitive soul ds2 is more matter of fact and will happily tell anyone that mummy is going to get bald and fat because of the doctors medicinr trying to make her better. He seems disappoint I still have hair! DD is not yet 4m. I really hope I get to see who she will be.

Had my chemo and now want to sleep. It appears from the echo report that ive had pericarditis (heart lining inflammed) although none of the doctors have used that word. It is a lot more comfortable today so hopefully its settling. The treatment is antiinfamatory medicines that I cant take because of the chemo so it had better settle down.

Morning Biscuits and weebarra. Hope today is a good day for both of you xxx

Another sending best wishes for a good day.

Things have been a bit hectic in RL so sorry I've not posted lately. Just wanted you and weebarra to know you're not forgotten. Sorry to read that you're struggling with difficult issues and thoughts. I hope the sun shines brightly again for you both, and soon.

Thoughts with you, as ever.

Hope you're both enjoying some peaceful time with your families.

IV chemo and intrathecal (spinal) today. Not sonething they normally do but needs must due to the bank holiday messing everything up.

Ive asked for a proper sit down discussion about my treatment as I have so many questions and dont deel ive had adequate answers. They better not try and do it when ive had the lorazepam or o might be more honest than I mean to be!

Good luck for the big guns today and I hope you get the chat you need. Shall be thinking of you

Hope the treatments go as well as they can today Biscuits. Good idea to ask for a meeting, make sure you have someone with you as it's always hard to keep up with the jargon and take everything in. I would make notes too (but that's because I'm a control freak!).

You are doing so well, the whole of Mumsnet is proud of you.