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

Hey Buscuits-!i agree with HypedeemicNerdle- if the chemo is giving you a battering it could be a positive sign it'll be knocking you into remission.

Livelaughlove90-amazing to hear another positive story- although I can't deny 2.5 years of chemo sounds gruelling.

Stay strong xxx

Just tried to eat some hobnobs on an insomniacal larder raid, but apparently hobnobs are now people in my head and eating them is not a very nice thing to do.

Hope you are bearing up

Was thinking of you today biscuits, not sure why but you popped into my head. Wishing you strength for your treatment, top of the class in test results and a fast and furious back to normal

Stay stale biscuits. Still rooting for you, still thinking of you. This round may be tough, but you are tougher!!

You can do this!!

Hope you are ok too weebarra.

Stay stale, both of you xx

Morning biscuits.

I hope you're feeling ok today. I was wondering how much longer you've got to go on this second phase, and what will come after. I hope a bit of a chance to rest and recuperate? Any more news on BMT, etc.?

Good to hear an ongoing and positive story from livelaughlove90. Another amazing and strong lady.

Your MN cheerleaders are all still here, cheering you on, holding your hand and confident that your body (& mind!) will beat this!

Keep going; a day at a time.

Morning biscuits, thinking of you today. I'm currently on the train to hospital for my first radiotherapy session. Might pop into the Maggies Centre if I am early.

Hello Biscuits, another one sending good vibes your way. Keep going.

Hello weebarra too

Good luck for the first radiotherapy session today. Do let us know how it goes. Thinking of you.

Good luck weebarra!

Sorry been a bit quiet. The effort of looking at a screen has been hard as the anaemia has resulted in a stonking headache! Also managed to get some nausea reduced appetite and then just whe I thought that was passing I ate a chocolate cream cake in a fit of "im not neutropenic today so I will eat what I want" and promptly threw up. 4 hours later I was in a&e with a fever they cant find a reason for but is probably viral and now im having a couple of units of blood. A haemoglobin level should not less than 8!

So a lot happening but nice bits too. The consultant gave me the article she had promised me and its very thorough. One wonderful line "these patients should be treated agressively and can be cured"

Another couple of weeks of this chemo that im struggling with then a bone marrow biopsy again and if im in remission (I have to be please God I have to be) I get two weeks to recover and then start another month with 3 brief inpatient stays flr high dose meds and then bone marrow transplant is supposed to be within the next month ideally. Still not heard about a donor but apparently should in the next two weeks.

Biscuit is got a little soggy but thats what happen when you dunk me in tea... it just leads to something better

Livelaughlove90

Wow
Thank you and im so pleased you are doing so well. Late effects worry me but I will take what im given :-)

Hope bits of you don't drop off in the dunking.

"these patients should be treated agressively and can be cured"

This is for you. Say it over and over. You have grown babies, you can do anything.

x

Couldn't have put it better myself Hazlenut. Thinking of you & wishing you the best.

Good to hear from you biscuits - and to know that you're doing as well as you could! Now that chocolate cream cake was pretty ambitious, you know! Hope the next couple of weeks fly by for you. x

Thinking of you x

Slightly soggy biscuit - it's lovely to hear that you're pushing in with the treatment.

What a perfect phrase in the research article - sums it up nicely!

I've not seen my colleague who's down to the last 4 for someone's BM match for a week and a half to hear it it's going any further. I've got this lovely mental image of his strong, healthy BM being given to you to fill the space that this chemo will have left once you're in remission.

Onwards for now with this gruelling journey towards the rest of your life.

Xxx

Morning Biscuits! Today is one step closer to cancer- free xxx

stay stale biscuits! Soggy is Ok too. xx

Readmitted with neutropenic sepsis.

Currently no side rooms so on an open bay with 0.7 neutrophils (bad) and 5 coughing patients. Am freaking out. Nurses just smile and seem amused by my concern. They say no side room no side room, nothing they can do. Stick me in a cupboard or send me home, I would be safer.

Nurses are like commandos aren't they?

Does anyone have any idea how long it will be?

Hopefully not too long

That's awful biscuits - hope you're over this hurdle soon. x

Oh Biscuits ((((hug))) hope there's a side room pdq. Express your concern about the side room frequently and repeatedly: you must be one of the top priorities for a single room, surely?

Ooh, mr biscuits wandered off and appears to have politely thrown his toys out the pram (also local HCP and very used to hospital ways) I am now in a side room. Apparently they were just cleaning it. .... Well why did you laugh and tell me the bay was fine and if there were no side rooms there was nothing you could do... 10 min beforehand?

Am just relieved to be honest.

They are also going to try and get me onto my friendly haematology ward. I am 1 on the list for a side room there