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

The nurse is very lovely. I think she just didnt realise and it all happened so fast. Ive started to wonder if my calmness when things go wrong makes them tjink things are less serious.it was scary but I did the panicing once the meds were in and a doctor on the ward and I could 'hand over' the problem. So i probably seemed less concerned than o was. Need to start panicing and shouting earlier. Though the adrenaline that drives me through it probably helped a lot that time. I really thought I was going to end up with adrenaline in my leg!

Feeling good but tired today. Kids coming later and going to curl up with a Disney x

Very magnanimous of you biscuits!

"Need to start panicking and shouting earlier"

Yup! Certainly need to start shouting at least! Sometimes the patient has to act as the missing synapse in hospital, don't you find? Bit exhausting though...

Yay for a Disney Day! Lovely to have your family with you. Hope it restores much-needed belief/positivity.

Enjoy your day with your kids - glad you're feeling good today.

I had the reaction to platelets, not as bad as you, but went to loo to to see swollen face & eye, was absolutely baffled. It's quite common just make sure you get the premeds next time!

Glad things are settling down, hopefully you'll be back home soon!

Stuff like that I thought needs to be monitored a bit closer... An infusion like that, set up in a side room, not hooked up to anything....hmmmm... That wasn't a bright idea. On the flip side, she did come in and did save you, so she's allowed her wine for the evening :) she'll be faster next time.
Really, she's never seen anaphylaxis creeping up?

I made brownies. Do you want me to drop you some?

Just been out for a walk with the dog and was overtaken by spotted some ramblers sporting red tshirts with "leukaemia lymphoma research" emblazoned on the front and "beating blood cancer" on the back.

Bravo them, and bravo you.

Wow biscuits, really glad you're OK now. Are you usually an allergic type? Take it easy and hope it all settles down for you.

Flipping heck biscuits, just as well you know what too look out for and are calm in a crisis.

I hope you've had a much less eventful day curled up with Disney and your mini biscuits

You don't do things by half do you biscuits ?!

Glad things have settled, hope you've had a lovely day with your family and that things continue along a more straightforward and smooth path.

Xx

I hope this week is calmner and less stressful. Are you half way through now? I can't recall best of luck for this week

Hope you had a great day with your family and enjoyed the film...best of luck for this week, and hoping treatment continues with less drama!

Evening Biscuits. Hope you enjoyed your Disney day yesterday x

Nearly home, one more night and am now off antibiotics so if my body behaves I can go home tomorrow inshallah.

Minor setback and mental note that I must check what the nurses are doing every single time as I only realised the anti sick drip hadn't been given before the chemo when i started vomiting violently. Everything is under control now. Easy mistake, there are so many changes and flushes and everything else I just assumed it had been done and I missed it.

I am now classed as severely neutropenic again. I've been here before but never at home and its scary. Previously I was mild to moderately neutropenic. Mild is under 2, mine today is 0.2

I'm on my last week pretty much of this stage. I have 4 more days of IV chemo, two more Lumbar punctures (cos Fridays didn't work) bone marrow biopsy and then they will I've me a plan ( I assume) :-)

Thanks for sticking with me. Baby R will be 4 months on Father's Day and I will be home in time inshallah to help the boys make their Father's Day cards :-)

Yey for last week of this tough stage.

Baby R's 4 month birthday, Father's Day and the end of this stage of chemo combined sounds like a great excuse for celebration.

I know nothing about being neutropenic but guessing that is what the chemo has done to you? Won't be too many more days until we are waving the pom-poms to encourage the neutrophils to grow again?

Missing the anti sick drip would be my idea of hell, I hate even feeling sick. Good to know you are on the mend after the infection

:(

Chin up, you'll get through this!

Just a setback Biscuits, not a pattern or a new journey, just a setback. You're getting through this and on your way home to your gorgeous family. That will be the best ever fathers day present for Mr Biscuits.

Hope you have a seriously strong day.

xx

Enjoy the card making and the first of many father's days with Baby R - still beaming positive (antibacterial) vibes through 'tinterweb aimed at you. x

Take care of yourself biscuits. You're precious cargo at the moment, marked "Fragile"!

Not for long though. Once this phase of chemo stops, presumably the neutrophils have their chance to fight back & increase again? Not long now, then. I'm with Hypodeemic, pom-poms at the ready!

Roll on the weekend. As for sticking with you, we're with you all the way! Can't get rid of us lot that easily!!

Not going home today
Yesterday that was the plan
Today its not
Apparently I can if I want but neutrophils are so low that im likely to be back im within a couple of days or maybe this evening.
Came as a bolt out of the blue.
They have been low for days. Noone has ever mentioned it as a reason not to go home this time.
Not until today.

:-(

On the plus side you are able to be monitored more closely during this delicate phase... unmumsnetty hugs!

Ah, the old goalpost moving. They're good at that in hospital! I suppose with the neutrophils so low, it must be for the good though. Nothing for it but to go with the flow. I hope the situation changes before the weekend but you must look after yourself. Getting better/not getting poorly is top of your list. Stay focused and stay strong.

Hi Biscuits

I have not posted for a while due to other commitments. Best to follow the plan. I have been out on low neutrophils only to have no control over what happens next and promptly being admitted to a ward in the back of beyond at 2.30 am in the morning and staying there (with no phone signal or internet) for 2-3 days. Very unsettling. You will be back up to >0.5 and hopefully out in time for the weekend and some sunshine it seems.

I tended to double the amount of time in my mind - ie if told its 72 hours for inpatient chemo then plan on 6 days, then if its shorter its a bonus. With the Methotrexate (next phase) it is definitely like that.

Stick with the plan because it does work.

I met another last week who had also been diagnosed with ALL T-Cell about 15 years ago. Now doing very well indeed and you see them on TV and you would not think they had ever got a sniff of anything other than a cold. Very fit and healthy!

Keep well and stay positive. And write a book because you are good with words.

Listen to Deserttrek....two steps forward, one back. Stick with the plan. You CAN do this.

Yep, Biscuits, listen to Desert - if you won't listen to me - write a book, you are good with words

Thinking of you often. I'm sorry about the hair raising allergic reaction and those pesky neutrophils, and I"m glad you're so near the end of this batch of treatment...keep on dunking, lovely.