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

Good singing :-)

Weird meeting At the transplant centre. Probably encouraging I think as was more encouraging about the chances of my surviving the first year that I thought...... Overall 50/50 chance of a cure.... But that's a cure!

Very difficult to talk about it though no new information really and desert has already prepared me for some of it which was good as it was less of a shock. This is going to be brutal.

It's over an hour each way from home. Kids won't be able to visit more than once a week I don't think, it's just too far for midweek and they don't want to spend. All weekend on the motorway either.

A bit worrying that he is worried about the impact of the fluid around the heart and whether this could mean I might not be in remission if it is still hanging around. I've been saying this for weeks but had kind of resigned myself to being a kassandra while forgetting that kassandra was actually right! He is also keen to transplant ASAP as even a few weeks delay risks relapse. Again something I worried about but when it was dismissed by the team here I felt falsely reassured.

But they have the matches, and that gives you a good chance! But we'll go for the cure, so if you could continue working on that please. How long would you be in for - did they give you any idea?

Glad you found the meeting encouraging - are you home again now, or was it back to hospital?

Another step forward Biscuits. Well done you. The next step is bound to be daunting; it's a huge deal, this transplant business. But this mention of a potential cure is hugely heartening. So glad desert did some preparatory pre-warning & helpful handholding.

I know you said it's hard to talk about it (completely understand) but - if you're able - same questions as ajandjj here, really. Also, how will they decide what to do about the fluid around the heart; will they be able to do the transplant notwithstanding that and whether or not you're in actual remission? You've got to keep on pushing for answers to your questions and telling them your worries! Your instincts count for a LOT in hospital (as I'm discovering to my dismay in my own personal health situation). Don't worry about being Cassandra; someone's got to listen eventually if you're persistent enough (exhausting though it can be).

Stay strong, & stale!

I've left the heart issues in his hands. He seemed concerned. It's his job to look into it and we are meeting again I. Two weeks by which time we will have a little more information including (if they pull their finger out) a bone marrow result. If its just reactive but not completely going away then it makes the transplant more risky but they will proceed. They can't proceed unless I'm in remission.

I would be in for about 6 weeks but everyone's course is different. Then weekly outpatients for 8 weeks. Quite worried about that as its an hour from my house each way and commuting 30min in for chemo has been hard.

I'm back in the hospital now having the worlds speediest blood transfusion so I can go home for the weekend. If I can stay fever free when im home with the wee petri dishes I'm back to outpatients on Monday.

Had a tour of the ward so at least I know where I will be. It's weird when the best you have to look forward to is high dose chemo some irradiation and a bone marrow transplant :-)

Biscuits, you are very good at being both positive and realistic in terms of your treatment it seems.

You will get through it, 30 mins daily replaced by 1 hour weekly commute will be a breeze to a woman like you.

Enjoy your weekend with the Petri dishes (love it)- they are what you have to look forward to xxxx

Thinking of you. Funny how the ones that do the plain talking can actually be more reassuring.

Thanks for filling us in biscuits. Absolutely praying for a state of remission for you. You've left your heart in this guy's hands so I hope he'll do his bit to look into it all carefully and that, in any event, the next few weeks will see the fluid recede and the risks lessen/dissipate.

The setup does indeed sound brutal, with the distances and length of stay so much greater, etc., but this could be curative biscuits so - my god - it's got to be worth it for that relatively short period of time, in the grand scheme of things.

Hope by now that blood's all been transfused and that you're home. Enjoy your cuddles with the Petri dishes but stay fever free, stay strong & stay stale!

More prayers for remission from here too

Praying for remission for you Biscuits. Stay stale!

Thoughts and prayers, biscuits xxx

Hey Biscuits,

Hope you have managed a nice sunny weekend at home courtesy of the wee Petri dishes keeping their germs to themselves.

Hope Mr. Biscuits and all the family have a well deserved lovely day today xxx

Lovely quiet and internet free weekend :-) apart from a couple of people who insist on calling for daily updates and keep calling until we answer we were able to live in our little bubble of pretending life is normal and mummy is just a bit tired. Nice just for a couple of days not to have to think about things.

Last day of iv chemo for this phase today so am back at outpatients. Bit of a waiting game now. Waiting for blood counts to climb enough for bone marrow waiting for bone marrow results and waitinf for counts to be stable enough for phase 3 chemo.

Would be easier if we werent also going back and forth to the transplant centre and fitting in lumbar punctures childcare husbands work occasionally sleeping... that kind of stuff :-)

I want a fast forward button.

I want to be in remission and be having the transplant. I know it might not work but everything else feels like treading water

LAST DAY!! Woohoo

Good to hear that you've been able to escape for the weekend and have a normal weekend. Do you think Mr Biscuits could have a little word with the daily callers if it's annoying you? Or arrange a daily text for them that just says alls well?

Time to start cheering for your blood counts to come up.

I don't blame you for wanting a fast forward button, and maybe a pause one too so you could have a few days off. You must have done about 9 weeks by now? You are doing awesome

Last day of this phase? That's good.

Onto the boosting up of you and your neutrophils then? That certainly isn't treading water.

Sorry to hear of the annoying people needing daily updates - they need sorting. Either by you if you feel able to explain how intrusive they are being or by mrB.

The trips to the transplant centre sound a pain to plan but it's still got to be a better situation to be in than being an in-pt. At least you get to be with your lovely family and sleep in your own bed.

Stay stale.
Xxx

Woo hoo - last day of the phase - that's moving forward, even if not fast forwarding....

I agree with Hypodermic about asking the daily callers to stop for a bit - whilst expressing that you welcome the support, it is possible to have too much of a good thing .

Stay stale, and here's to a good blood number!

So pleased you had a lovely w/e.

Just get Mr B to tell the daily callers not to do so. It's very thoughtless of them.

Stay stale!!

XXX

Good luck Biscuits. Everything crossed for you here. Thinking of you often!

Still here cheering you on! Glad you got some home time

Well done on reaching the end of the phase 2 chemo, biscuits. Praying for you that neutrophils rise, that a bone marrow transplant is feasible and that you get good news of this soon to cheer you forward.

Somewhat pointless day todat. Kids in childcare and im at home. Not well or strong enough today to look after all of them. Cant just pick one and even one I would struggle with on my own I think.

So worried about mr biscuits. He is so tired but hust keeps going. We do have people helping but he wont make use of the time to rest.

Have spent a while cleaning. Im so neutropenic I shouldnt but even though we do now have a cleaner (desperation) mr biscuits has a lifelong inability to see dirt or adequately risk assess. It has always driven me up the wall but he does oher stuff that im rubbish at so we just share. I can't safely eat when the kitchen isn't clean!

Please don't put yourself at risk. Any one of your friends would come and blitz your kitchen - I'm sure they would jump at doing something practical to help. And of course, Mr. Biscuits is forgiven everything at the moment!

Hope you can enjoy having some peace and quiet today.

I second asking a friend to come in & help clean. Try one of those who rings daily! If I was a friend of someone in your situation I'd be so pleased to be able to do something practical to help you.

They would need to do it every day :-( and he would ve mortified. He is so tired but all I seem to do is nag him. I darent eat anything I havent taken out of a packet myself. He cant make the link on his own that if he doesnt wash his hands when he empties the dishwasher then whatever wqa on his hands will be on the plates! And the clutter!

Whinge over :-)

I promise if I can ever live a normal life where people being messy doesnt put me at risk I wont moan for a second!

God I want a normal life

Cant even take advantage of child free time and go out for coffee.

I miss him and the kids.

Need to start baby rs scrapbook but where to sit that doesnt need hoovering (definately cant do that as stirs dust up too much)

Im a real mardy cow today! Nothing is going to make things right is it? Somehow need to dust myself off and get over it.

This (kind of limbo) part sounds really tough, Biscuits. Go easy on yourself. Normal will come soon enough, & you'll appreciate it all the more having been through this purgatory. I wish there was something I/we all could do to help - cleaning is a favourite pastime (saddo that I am)!

I'm sure Mr B is tired & emotionally a bit frayed, but this difficult phase won't last forever & I'm sure he'd do anything to support you & the family through the tough times. He has my hugest respect & no doubt that of countless others. More "man" than most! You'll both emerge stronger biscuits for it. And The Biscuit Tin will flourish again!

Keep going strong lady, & stay stale X