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

checking back in. I am sorry i haven't posted for a while.

Am thinking of you and willing you on Biscuits. You are a strong lady, and if you're feeling alone, then so be it, you are entitled to. I hope that came out ok, but you are in my thoughts and i wish i could do something positive for you.

xxxx squeezes hand

Hobnob, it has to be done. Given the distress it is causing you, you might ask for some proper sedation, not just midaz. As in stomp your feet and call in favours.
Hope the baby is feeling well now.
Hugs.

I'm sorry I can't add anything groundbreaking but you just eat my dear. And you must have someone else do the biopsy. Whoever did number 2 by the sound of it! Millions of prayers my dear and hope cell count starts to rise tomorrow

I had a really bad manicurist once who used to hurt me and make my cuticles bleed regularly. For all sorts of very silly social reasons I stayed with her much longer than I should have.

An LP is NOT a manicure. He sounds untalented at that procedure. Please don't suffer his ministrations again just to be polite biscuits

Have just read through your thread, biscuitsandbandages.
I've recently started another thread on here, as I'm coming at this from the other side of the fence, as it were, as a stem cell donor. My brother has a lymphoma and I've turned out to be a full match. Don't have any dates yet but have been told to keep some dates in August free.

Every now and again I feel a stab of anxiety because it seems strange to be preparing to go through a medical procedure when I'm healthy. But reading your thread, and thinking about what you, my brother and countless others are going through, puts it in perspective, and it feels quite humbling to know I'm playing a potentially life saving role in his treatment.

You sound like an amazingly strong woman. Hope this weekend goes smoothly and that the 'no rews' quickly turns into 'good news'. Limbo is a tough place to be, but as others have said, it's surprisingly common with health issues, and you're going through complex and highly technical treatment so I guess it's inevitable that sometimes there will be stops, starts and 'don't knows'. Hang onto the fact that its all part of the journey.

Take each hour and each day at a time. There are going to be tough hours and days. There will be better ones ahead.
And post away here even if it helps a micro mini bit. We're here to handhold xxx

(Come on those neutrophils!)

Hoping for a better day today biscuits. You must be worn out with the limbo, the anxiety and all the family stuff running through your head. Holding your hand.

Thank you everyone and well done Lines for being your brother stem cell donor. I wish my brother had been a match. I didn't realise until a week or so ago that he hadnt really taken in what they had explained about the donor process and still thought he would need an anaesthetic and bone marrow biopsy when he asked to be tested. He said I had had two by that point and chemo so although he is scared of needles (like me) he would overcome that. I was so touched he would go through that for me. I hope it is successful for your brother.

Im eating and drinking today. Out of bed, stopped aobbing and staring at the walls. Trying to pick myself up and start again.

The inconclusive test showed some markers that could be early bone marrow regeneration. ... ot could be a previously hidden type of leukaemia. We wont know until the next test which will ptobably be in about 10days.

What a lovely brother you have.

Sending you strength for the next 10 days

I think of you so often, biscuits.

Keep stale & keep strong.

Sending prayers for the next ten days for a clean and whole bone marrow

Biscuits - my brother is in a similar situation to you in that this illness hit out of the blue. He was just a normal healthy guy, and then - wham. Suddenly diagnosed with this awful disease. It still seems unreal that in within a couple of months I'm likely to be in hospital donating stem cells. It never crossed my mind for a moment not to though. It's nothing compared to what he's going through. And it's potentially curative which is amazing. Thinking of you biscuits.

Thinking of you and sending you a hug. ((Hug))

Here's to early bone marrow regeneration, biscuits!

Living with uncertainty is so hard but I hope you can stay positive and find a way to navigate through the next ten or so days.

You have a wonderful family.

You are one strong lady. I have followed your thread and think of you often.
I am amzed by your positivity and strength and will be praying for you.

Erm......

I feel well today, all the fluey achy low energy symptoms have gone, so has my sore throat and cold symptoms

Neutrophils starting to creep up though still deeply rubbish.

However I may have accidentally condemned myself to 5 days of strong, not very nice and very expensive iv antibiotics by heating my room to sauna like proportions.

The chemo has made me cold intolerant and this room is drafty. I felt well enough to sit out in the chair and wanted to do things without a blanket wrapped round me so the nurses have been mocking me about making them sweat. I had a one off temperature of 38.3 and since we turned the heater off it has settled. But but neutrophils so low they can't take the risk!

Oh no! Drafty rooms are very annoying. Glad you're feeling better though. Have you got one of those funny blankets with arms in them?

I had a stay in hospital last week, and surgeon likes these devices called "bear hugs". Basically a thin lilo, which goes over you, and is kept constantly inflated with hot air. Idea to keep you warm so that wound heals better. I sweated for 24 hrs, and just kept telling myself it was like a crazy spa treatment.

Hope neutrophils start behaving themselves....

Hopefully now that you're feeling better, and the fluey symptoms have gone, the neutrophils will start to behave properly. One more weekend closer to being well again!

Great news that you are feeling better and neutrophils creeping up....all steps in the right direction.
Thinking of you

Hey Buscuits- just catching up as have not been around for a few days. It's a real pain your results were inconclusive and you have to go through the procedure again. Hadn't really considered that . You are still doing an amazing job and deserve for your next procedure to be pain free and with super positive results. Hope today is a better day for you- eat, drink, stay warm and post. Hopefully baby R and the boys can make a visit too. X

Sorry to hear that you weren't able to get your results on Friday, it must be frustrating beyond words.

I am happy to hear you are feeling better today though. You are one strong woman.

Come on neutrophils, keep going up, up and up some more.

Thank you.

Still here. Bored out of my mind! Still on IVantibiotics for what I still think is an imaginary infection but I'm not taking any risks so going with it.
Still haven't had a temperature since we turned the heater off!

Yay for not having a temp at least! Glad you are feeling well enough to be bored IYSWIM.

What are you doing with your time in the hospital? Reading? dVds? Crosswords/puzzles? Craft? I'm sure us onthread can bore you rigid inspire you with some daft suggestions of things to do.

Something I did when writing to my cousin (she was in chemo isolation) was balloon letters. Get a packet of balloons and a sharpie (permanent fineliner), write a letter on a blown-up-but-not-knotted balloon, then let it down and post it in an envelope. Might be fun to do a few for your DC? mr Biscuits could hand deliver them I'm sure....

Oh and if you like scifi of the vaguely buffy/superhero variety I highly recommend Dr Horrible's Singalong Blog (it's a one off mini film starring the guy who used to be Doigie Howser, plus the fit captain bloke from Firefly!)

I love the balloon idea! I'm annoyed as I should have mentioned before that apple iBooks have been giving away a free book a day for the last few days. Maybe they are still doing it? My mind is a complete blank for interesting things, but I am sure that other people will have some good ideas. Hope the neutrophils are rising.