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

Big Yey for DS2! How fabulous.

It sounds like you have had a wonderful weekend together as a family and like others want to raise a little glass to mr biscuits too. There are so many threads about the awful men around its lovely to hear that quietly behind the scenes mr biscuits has been keeping the home fires burning.

Your lovely family shines through on your thread biscuits and it's great to hear that you've been back where you belong doing normal family stuff

He is amazing. I dont think I could have managed half as well as he has. He was pretty cool before though.... im very lucky :-)

In the morning I start chemo again.

Its hard not to worry. The unknown rears its head again and the semblance of normality, the pretense of an assured future (short term at least) ia being taken away again as they poor the next concoction into my veins.

Im still unreasonably upset at not being im remission. It doesnt help that all the prognostic tables list wbc >100 and failure to be in remission by day 28 as such a big deal.

Logic dictates that they are linked. Someone whose bone marrow is so packed with cells to start with is much less likely to get to remissiom than someone who has only a few cells. I dont really understand why but some how my bone marrow was making just enough platelets and red cells to keep me from bruising or being noticablr anaemic....... that let the leukaemia hide and gather forces for a few weeks. I wish I knew when it started but I never can.

When baby r was born and they took blood from me I asked if they would check to see if my iron levels were better. There was no clinical reason. It was just idle curiosity and a hope that perhaps I could stop taking the tablets.

What if that could have shown it earlier if I had insisted? I didn't and they didnt check as there wasnt a good reason.

But it couldn't have been there 8 weeks. It could nt. I would have been far sicker and I really was ok. The pregnancy anaemia wasnt related and actually when the leukaemia was diagnosed my red blood cell level was almost normal again.

What if? Not helpful. Sleep would be helpful but I cant turn my brain off.

Very scared again. Worried I might die.

i don't have the right words to help how you're feeling but i have read your latest post and i am thinking of you.
try and get some rest.
tomorrow never knows and you are not alone right now. x x

Holding your hand. Try to look forward rather than revisiting the past. I know forward is scarey but you can't change the past. There is a lovely thread on here ATM about words of comfort in dark times. Will try to link. How lovely to share the joy of the bike riding! I too am a fan of mr biscuits. You are clearly surrounded in real life by people who love you very much.

Can't link from phone. It is in chat and called something like give me your best it will be all right saying. Xx

Just prayed for you Biscuits. Hope you can get some sleep. Xxx

I hope you got some rest in the end, fears are always much bigger in the night, so I hope they are more manageable now the day is breaking.

How wonderful to witness your DS's triumph. My 6 year old refuses to try any more and it's driving my cycling nut DH bonkers!

Good luck today. My thoughts and prayers are with you. Xx

Biscuits, it was lovely to read of your sunlit weekend with your family. I'm so pleased for you in that respect, though so sorry to see you worrying in the wee small hours. Entirely understandable when faced with this new reality, of course, but I and many other Mumsnetters just wish we could take that anxiety away from you.

It's hard not to have an eye to it, but we can't tell the future; none of us knows what's round the corner. It's an illusion we're all living with: the pretence of an assured future, short term or otherwise.

The past is also a bit of an illusion. We often rewrite it so our "script" sits easier in our understanding/acceptance of ourselves. I'm very sure they would have put down low haemoglobin/ferritin down to the pregnancy had they tested your bloods after Baby R was born. It's so common to be be anaemic at that time, and in diagnoses they always "think of the easy first" (Martin H. Fischer). Don't beat yourself up thinking of the past, and what you could have done differently. It doesn't help the present and it may have made no difference.

I can't stress enough how much lighter I felt on reading "The Power of Now" and trying to harness/practice Tolle's teachings (or musings, if you like). Another Mumsnetter (stuffofawesome) mentioned mindfulness which is very much along the same lines. And many other posters have suggested the idea of taking it all one step at a time and trying not to look too far ahead.

Mindfulness and Present-dwelling aside (and I am sorry to sound so ethereal. I don't usually! My own recent health/hospital experience was very transformative), there remain many logical reasons to be upbeat. As you say, it makes perfect, logical sense that one who has bone marrow so densely packed with nuisance/naughty cells will take longer to get into remission. The 28 days can only ever be a rule of thumb. Your clinician wasn't surprised at your current situation and felt that - in the circumstances - you'd be more likely to achieve remission after the second phase/hurdle. Right? I hope I've remembered that correctly.

I also hope you feel more positive/less scared this morning. Nighttime is a dark time for thoughts. Good luck with everything today and please continue to draw on the support and handholding.

By the way, Mr Biscuits sounds amazing; someone who deserves for his wife to get better. Keep going, strong lady.

Hello Biscuits,

Hope you managed to get back to sleep after your fretting. Are you able to talk to the consultant today about your fears that you haven't 'come up' to the statistics? Would that help you?

How long will you be in hospital? A few hours? Hope it passes quickly.

Oh, and well done to Biscuits The Younger on his cycling triumph. Great that you'd already got home and you could be part of it.

This is the thread of uplifting words. it will be alright

Mumsfret, that is a very uplifting, heartfelt post.

It is very hard to 'harness' mindfulness, isn't it. Yet once you get that thought of thinking about mindfulness, it is a self loving and nurturing tool.

28 days, maybe you are 35 days, or 2nd lot 28 days.

Will check in later, sending hugs. xx

Your age alone must be a huge factor in your favour biscuits, surely women in their prime don't make up the bulk of ALL patients? Are the stats you are looking at age stratified?

In any case, you really need to be your own con-woman. Distract your own thought process. Dwelling on the darker side won't help you.

What happened to "the statistics don't apply to me". You were, in the most mathematical sense, correct; they don't.

Being an HCP is a double edged sword for you, I think. Can you make a pact with yourself to step away from the papers and the protocols for a week or two?

Hope chemo went ok

Just checking too to see how chemo went

Hi, no Internet access in outpatient chemo and I was there for 6hours!

Just got home.

Knackered, hot and hungry (no food suitable for neutropenic patients either) but the chemo didnt make me explode so far so I'm feeling a lot more positive.

Funny you should mention mindfulness mumsfret... That was my reading material for today :-)

My age is sort of good and sort of bad.

Over 35 is poor prognostic indicator but of course this includes 35 and 1day aswell as the 70 year olds so it's a heterogenous group..... And I'm not quite 35 (few months off) so on my good days I can look at it as a good point.

I find it really helpful reading the papers and protocols just so I know what is ahead. For example apparently there is a two week chemo break after this month.. It ties in beautifully with sports day so I'm quite excited.... But the problem is the stats are always included. Doesn't mean I have to listen to them.... They don't apply to individuals and therefore they don't apply to me......

I need to remember that.

It sneaks in when I'm low....

Food and being home is making me feel less rubbish than I was. Lets see if a cup of tea can finish off the job of making me feel human :-)

no food suitable for neutropenic patients either

How helpful

And I'm not quite 35 (few months off) so on my good days I can look at it as a good point.

It IS good

But the problem is the stats are always included.

I'll come round with a marker and redact them all for you

Food and being home is making me feel less rubbish than I was

Good!

Yay for marker pen!

How can there not be any suitable food?!

Hope the tea is helping, and hope you win the mothers' race in a few weeks time

I know! Live yoghurt and salads on the cart. It was nice of them to offer free food.... But I would have been happy to pay for a shees toastie I can tell you! ;-) I will be better prepared with snacks tomorrow :-)

Well tea and baby snuggles helped and I feel pretty normal again. Reassuring to know the chemo isn't affecting me too badly yet. If I can stay as well as I did last month I might actually have a nice time. It's restful and I can finish my blanket, read books and then come home to my children :-) inshallah inshallah (if God wills it- Ie don't be cocky and count your chickens :-)

inshallah inshallah (if God wills it- Ie don't be cocky and count your chickens

I love freestyle translations

Just checking in & am another one with a great belief in 'inshallah'.

And your age & attitude.

Go! Biscuits! Go!

The power of thought from all these random strangers here is going to help - for sure.

Yay for restorative cup of tea and baby, and yes yes to the marker pen idea!
And being under 35 IS a good thing!

Stay stale biscuit yone, you can do this!!

biscuit yone ????

Hell no!!

I meant (of course)

biscuity one!!!