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Original poster

Needles and Neutrophils: The Hobnob Chronicles

999 replies

biscuitsandbandages · 11/05/2014 07:15

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

OP posts:
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Original poster
biscuitsandbandages · 14/05/2014 11:16

Yay! weebarra good to hear you are feeling good. Tuna toastie mmmmmm

Neutrophils 0.96 I am only 'moderately neutropenic' rather than severely now which means a trip to the cafe is on the cards.

They want me to take a chair in case my brother has to push me back!

Bollocks to that!

Can walk will walk!

OP posts:
Only1scoop · 14/05/2014 11:21

Biscuits....cafe

What's on the menu....

Everytime I check thread now I want a Hob Nob AND a toastie....

Thinking of you

Hugs x

AWombWithoutARoof · 14/05/2014 11:37

I now want a shish kebab.

Kakaka · 14/05/2014 12:00

Glad to hear you are okay weebarra.

HypodeemicNerdle · 14/05/2014 14:02

Sounds like those neutrophils are coming up amazingly, didn't you have to get to 1 to be allowed to go home? If so they are getting very very close which is super exciting. Hope you are enjoying a cafe lunch with your brother.

Good news weebarra too, I'm intrigued by the bunnies from your window, I'm imagining a hospital crossed with a vets surgery which seems unlikely!

Original poster
biscuitsandbandages · 14/05/2014 15:00

Yay successful trip to the cafe although I am very tired now.

Annoyingly had a chat with junior doc who is sorting out my outpatients stuff for hopeful discharge tomorrow as we speak...... The boss isn't planning on giving me the bone marrow results until all the scans results from todmorrow and a blood test on tuesday is in..... Then I will get an apt to see him to discuss starting phase 2.

Are we not supposed to be starting it right away?
Come ON guys!

OP posts:
Original poster
biscuitsandbandages · 14/05/2014 15:14

Ok, calmer and have looked up the protocols myself.

They need to wait until my white blood cells are over 3. They are 1.8 ok.

That's fair enough but why can't they just tell me?

OP posts:
AWombWithoutARoof · 14/05/2014 16:00

Do you think it's one of those situations where they think someone else has told you already?

Glad the cafe trip went well, when will you know whether tomorrow is Home Day?

Original poster
biscuitsandbandages · 14/05/2014 16:39

No I asked the junior doctor who was on the ward what the bosses plan was...... He seems to think blood test Tuesday then clinic apt later in the week to discuss all the results and plan starting stage 2.

No if he is wrong it wouldn't be the first time......

I plan to try and get some info out of them tomorrow afternoon in big ward round day and then go home :-)

I suspect if it is bad news they won't want to tell me without my husband. Problem is that isn't possible due to the childen and after nearly 5 weeks here I would rather just have the info please.

OP posts:
ajandjjmum · 14/05/2014 16:57

I hope you can get them to talk to you biscuits - the waiting must be horrible. Glad the cafe went well - you've earned a rest now! Smile

AWombWithoutARoof · 14/05/2014 17:15

Fingers crossed.

blondepip · 14/05/2014 21:48

Great to hear they are busy sorting out home tomorrow. I generally found nurses could have the completely wrong info and even the registrars did at times. I was given blood results which an hour or two later had to be completely disregarded as apparently the lab had reported the test was actually flawed, very annoying but the consultants were always top dog and could have completely different news/protocol to what was apparently 'standard'. So you never know what the consultant will have to say. I have my endocrinology appointment tomorrow to sort out my lack of hormones since transplant, still to this day have no idea what my body is doing but suspect I'm fully menopausal! But it's an appointment a year ago I thought I'd look forward to because I'd be the other side, and here I am now going to it! Keep on going biscuits!! Hope to hear a post from home very soon!

Spinaroo · 14/05/2014 23:42

Evening Biscuits- an eventful day, it would seem. cant believe you are sloping off to lunch in the hospital cafe today when I think if what you went through yesterday- truly awe inspiring!

Great post blondepip- good luck for tomorrow. Hope both of you get good news- and that weebarra checks in again to let us know how she is doing. Quite the team!

olympicsrock · 15/05/2014 00:18

Hello biscuits, just checking in to say hello. Just wrote an email to the university for another Masters extension (midnight deadline now passed...) so I'd thought I'd distract myself by seeing if you had posted about any more sheesh toasties.

You are being so amazing and positive and brave. It puts all our problems (part from weebarra's and blonde pip's into perspective. You will soon be at home with your boys crawling and jumping all over the bed and snuggling up to you all soft and delicious. Sleep well and stay stale x

Original poster
biscuitsandbandages · 15/05/2014 05:39

Thanks everyone. Up early for breakfast as im fasted now until scans start at 9. I have a few different ines through through the day but can eat after the first set.

Going to try and get a little more sleep now but excited that scans may get us some more answers (information good or bad is useful whatever) and very excited about home. Have asked mr biscuits to bring me some shoes! To go outside after exactly 4 weeks and 4 days will be amazing! Ooh my own bed, a cup of tea in a normal mug, food and drink when I decide not when its feeding time on the ward, tv! My garden where the grass seed we planted together (even baby r did a handful) is now a lawn! And most importantly I can go and get into my sons bed with them and let them slowly realise mummy is there while they sleep.

OP posts:
SpottieDottie · 15/05/2014 05:49

Good luck for today

TarpalCunnel · 15/05/2014 05:59

Wishing you good luck for today Biscuits Thanks

Mumsfret · 15/05/2014 06:13

Awake early too, biscuits. Babyfret has me up for feed. You'll be doing that with Babybiscuits/Baby R soon! So pleased for you Smile Really hoping that the combined results due to come your way soon put you on an upward trajectory and give you more hope and positivity; you're doing so well. Was so pleased you got out into the (nearly) real world for lunch y'day. A good time to be homeward bound, too, as the weather's set to be really good for the next wee while. Not that that matters a jot, but the sun will do its best to get the grass-seed thriving & - who knows - might even have an effect on the old neutrophils! Sun always helps the soul, I find. A bit of Ruskin's old "pathetic fallacy" in your case, as I'm sure your soul will be dancing a jig to be back home anyway.

I'm not sure how you're feeling physically at the mo but I was very weakened & really lacking in stamina when I got out of hospital recently. I did find it hard at times to deal with the more difficult moments when the children (inevitably) became tired & fractious. It was usually easy enough to remind myself that I'd far rather be at the warm heart of the family home (warts & all) than languishing in hospital, but there was an understanding with DH that sometimes I needed to take myself off (into garden, bedroom, wherever) just to catch a breather until it all felt a bit less overwhelming. You may not need the same but just thought I'd mention it as family can be all-consuming & some of us (love it though we do) may need time for reflection, or just plain old rest!

Ooh just thinking of all the things you can do, but really it's enough to have a good old cuppa from your fave mug. Ooh, & a favourite biscuit. Delivered by a DS or DH! In the garden!! Bliss.

Hope it all goes well, biscuits. Keep us posted.

mumster79 · 15/05/2014 06:26

Good luck Biscuits!

Fideline987654321 · 15/05/2014 06:47

Waking up at 5 for breakfast!? I'd have to starve! Good luck Smile

weebarra · 15/05/2014 06:55

Good luck today biscuits, how wonderful to be in your own bed again.
I'm ok, hoping to go home today too. I know it will take a while to get used to the changes to my body. I suppose I will feel better once the drains are out.
I'm lucky in that I'm getting this done privately through DH's work, so have my own room and nice food!

Stuffofawesome · 15/05/2014 07:45

hope today goes well for both of you and you are home before nightfall

Panicmode1 · 15/05/2014 07:53

Good luck today Biscuits, and very wise advice from Mumsfret!

Only1scoop · 15/05/2014 07:54

Good luck today Thanks

Tootyfilou · 15/05/2014 09:28

Good luck today, thinking of you Thanks