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

Biscs - if you do lose your hair then I can truly recommend this company for wigs:-
www.internetwigs.com/

I have alopecia and have used them for years. They are 100% fantastic. You can ring them for advice and pre-booked visits are welcome (I know your over 100 miles away so it may not be feasible).

If you decide to choose a wig I'd definitely recommend them xxxx

A man caring for his own children? Alone? I'm surprised you didn't get a blue light HV

Do you get a cold cap for this type of chemo?

Total aside- have you read Nanny Ogg's cookbok recently?

My favourite recipe in there is the Librarian's contribution...

"take one banana"...........

Hey Biscuits!

How are you feeling today? Hope a chemo- free day means a little more energy for you to enjoy some family time xxx

I don't get the dwarf bread thing
Having said that I am after book recommendations so it sounds like there is another one I need to add to the list.

When my FIL lost his hair through chemo it grew back fine and soft like a baby so maybe you and baby R will have matching hair for a while

Hypodeemic. www.goodreads.com/quotes/672595-the-dwarf-bread-was-brought-out-for-inspection-but-it

No I can't cold cap as the chemo needs to get everywhere. I thought I would want to stick with scarves but the longer the process drags out the more I wonder if a wig could work.. I'm not sure....

Not the best of days... Took the boys out for a wlk and the heavy tight feeling got worse and worse.

Just got back from A+E, the fluid around the heart s getting worse but my heart is holding up ok, my blood counts are good and the lymph nodes in my chest continue to improve even compared to last weeks ct so I'm home on the proviso I take it easy and the haem team have been contacted to expedite cardiology follow up.

I'm really upset it's getting worse as I don't know why and the feeling is horrible in my chest. It's probably just as I'm off the steroids now and it's not as bad as it has been.

Hugs to you biscuits x

Try to take their advice and take it easy

You,re doing all you can fighting this, your strength and determination is touching us all, and helping many of us too....i just wish i could help you, but trust in your team, they sound wonderful

You are amazing and you are going to be fine. I along with hundreds of others are praying, willing and wishing you a complete recovery xxx Keep fighting xxxx

Hang in there biscuits. Be strong. Things are shit at the moment but you have the love of Mr Biscuits and the crumbs everything will be ok in the end.

Aw, Biscuits- it's hard to read your disappointment as you have been doing so well and deserve to feel better. You do seem really pragmatic though, and can accept what the doctors are telling you about the fluid etc. - but I can appreciate it just be very hard to feel the very same feeling that took you into hospital that first time.

You do understand- and have helped me and others to do so too- that there is no quick fix to this- it's a journey of many steps. There will be physical and emotional challenges ahead but you can look around you tonight and know its a journey worth making! Stay strong xxx

Keep your eye on the positives, biscuits: lymph nodes improving & bloods good. Hopefully the cardiology will provide/expand explanation for the fluid/pain, as soon as poss, & you will feel reassured. Until then, stay strong and keep going. X

How about hats rather than scarves? A friend had a wig but never wore it, just had a mixture of wonderful hats. She couldn't really get on with scarves and said the wig was too hot, but she had lots of fun deciding which at to wear each day - gave her something else to focus on.

Focus on the positives - and I hope cardio can give you some answers soon. Xx

Sorry yesterday was not so good biscuits - but good news on your blood count and lymph nodes.

Sorry yesterday was not a good day. Hope today is better. I am now 5 weeks post chemo and I have baby hair! Except babybarra's hair is longer. I have a wig but dont wear it much. I mostly wear Handybands from Seasalt - don't need to faff with scarves!

Hi weebarra nice to hear your update. How are you feeling after surgery?

Hi Spinaroo. Pretty much fine though have had fluid build up where breasts were and will have to get drained. Feels exactly like milk engorgement!

Do you have to go into hospital for that or can it be done at Gp surgery? Hope you are having a lovely holiday weekend and can take it easy x

Hospital . Surgeon was planning for Thursday but it's pretty bad so hoping he can do it before. Not a holiday here in Edinburgh - we had last Monday off.

This is so hard.
Its almost harder being home and being back in their lives.
Hard not to dwell on the chance I wont be forever.

Holding your hand today biscuits

It sounds like this round of chemo is very intense but it's killing those bastard rogue cells

One day at a time, you've had shit days before and got through them to brighter days, today will be no different

Aw nuts, sorry it's been a tough day. Baby steps. Take each hour and day at a time. The DC will love you just being with them and doing things, no matter how little. every day, every hour, every hug is a bonus.

I agree that the fact that this chemo is knocking you about so much more than round 1 did should be seen as a positive.

Your body is far too busy fighting the rogue cells to give you much spare energy.

I can understand that being at home must bring mixed feelings, but sleeping in your own bed and resting on your own sofa with biscuity cuddles on tap has to be good for you.

Much love as ever.

Hand holding and sending strength and prayers Biscuits. Xx

Me too x

And me too. Hope tomorrow is an easier day. xxx