Friday, 27 January 2012

Scary times

Daughter had a collapse at home: pain, couldn't breathe, went bright white.  Took her to hospital and she had another episode in the car.  It was very scary, and I was on the verge of pulling over to call an ambulance.  It didn't help we were driving into the city in rush hour.

Anyway, by the time we got there she was feeling better.  They still kept her overnight and scanned her to check her organs, but there wasn't any evidence of anything that had caused it.  Some of her bloods were a bit raised though.  She's been sent home and we have to keep a close eye on her.

It was scary.

I am pretty certain that whatever it was might show up again.  Over the past year I've learned that pain usually transpires to be something.  It doesn't just disappear never to be an issue again :-(

We are still waiting for an appointment to see a liver specialist for second potential condition she has.

Rough times again, and I'm due to attempt work again in just over a week.  They are keeping her off chemo for another week as her counts are still low, so hopefully she will have a chance to feel a bit better.

Lumbar puncture on Wednesday with spinal chemotherapy.  The fun never stops for her.

Monday, 23 January 2012

One step forward, two steps back...

I've had a call this morning to say they think daughter has another condition on top of her leukaemia.

There are no words :-(

Thursday, 19 January 2012

Back to work?

I had a meeting with work and they have agreed to me phasing back in.  They were incredibly lovely and supportive.  It is a big weight off my shoulders as I was getting worried about my job and future income.  We need me to work; I don't have a choice.  I asked the consultant about parents working, and she said that many still do through maintenance chemo. 

I think it's the luck of the draw really.  Whilst she is well, I'll be fine to go in.  As soon as she gets poorly it will all grind to a halt again.

She had her bloods checked yesterday and she is once again neutropenic.  Her platelets are also low and she's getting a rash.  They have taken her off chemo for a week to give her body a chance to recover.  If her platelets stay low, then it will be transfusion time again.  She's actually okay in herself, just full of cold which is the virus that's probably knocked her neutrophil count so low.

They still want her to go to school if she feels up to it.  Many of the infections chemo patients get come from bugs in their own bodies, although they do need to be careful with external sources.

She still had her vincristine yesterday, so she'll be feeling pretty shocking today.  It gives her back pain, sore mouth, joint pain and makes her feel very sick.  She does get 5 days off steroids alongside it to boost her.  Cheese strings beware!  The monster appetite will be back in a couple of days.

Sunday, 15 January 2012

Another week

So, she has managed a few bits of days at school.  We were feeling positive until I picked her up on Friday.  She looked quite tired then.  I think it will take her a while to manage full time again.

She is due to go to hospital for her vincristine on Thursday, so another few tired days to come.  It wipes her out, makes her feel sick and sore and hurts her mouth.  Teen girls are particularly affected by it for some reason.

I am trying to sort myself out still.  I've managed a week of good eating and regular exercise, although I've managed to pull my back a bit as I'm so unfit and unused to it.  I'm feeling quite lost at the moment.  I've been reading threads about letting yourself go, and I haven't made any effort on myself for the past few years.  The only time I look nice, with nice clothes, is when I go to work.  So, because I'm not working at the moment I've just looked a state for the past 12 months.  It doesn't help that I've regained lost baby weight and I'm in fairly naff clothes.  I haven't got the budget to go and buy more, plus I'm doing that thing to myself where I refuse to buy clothes whilst I'm fat. 

Resolution: to make more of an effort with myself for me.  It will make me feel better.  :-)

Wednesday, 11 January 2012

One Year Down

At around 6pm this evening it will be one year since daughter was diagnosed.

It was the worst day I've ever had.

I am just so, so, so grateful she is still here and doing well.  And however stressed I am about money, and work, at the end of the day this is all that matters and the rest be damned.

Monday, 9 January 2012

Trying a different approach

School went okay, although she only managed 2 of the scheduled 4 days as she was very wiped out with a nasty cold, and now she has platelet rash.  This means I need to keep an eye on her in case it spreads as it can indicate that she needs a platelet transfusion.  This has been a pretty common thing over the year.  The chemo nurse said it happens a lot in the taller, older children.

I am trying a different approach to try and sort myself out.  I have rejoined Weight Watchers, am blasting myself daily with Paul McKenna's CD to try and change my emotional eating, and I'm attempting to get some exercise.  So far I'm 3 days in and feeling a bit better, which is helpful as I'm very housebound at the moment with daughter, and son has a very nasty eye infection so he can't be around other kids.

One day I will wake up, and everyone will just feel well and happy.  It WILL happen.

Wednesday, 4 January 2012


Am I becoming one of those people who only ever talks about how rubbish their life is?  I think I am.  In fairness, I was already heading that way before daughter became ill.

I remember my Grandad being in hospital with cancer.  He had managed to overcome it, but he was a very stubborn person so as soon as he got out of the hospital he tried to ride his motorbike up to his allotment (his passion).  He fell off and broke his hip.  The cancer set in again.  He used to have various visitors as an inpatient, but one lady always used to wind him up.  He was very poorly, yet she would sit by his bedside and complain about how bad things were for her.  He used to laugh after she'd been.  I want to be like him: positive in the face of adversity, and yet I think I am more like her.  I am becoming a victim and I don't know how to stop myself.

I'm trying to be more positive, but it is difficult when you feel like you have so little to look forward to, and when things are so uncertain.

I am grateful for my husband.  He is lovely and kind and he puts up with a lot of rubbish from me.
I am grateful for my children who are both brilliant, funny and bright.
I am grateful that we have a roof over our heads and enough money to pay the bills.
I am grateful for my family even though they live away from us.
I am grateful that daughter is still here and I am grateful to the medical professionals that have made this possible.

I do have many things to be grateful for.  I need to keep reminding myself.

This too shall pass.

It will all come right in the end.

Tuesday, 3 January 2012

Back to school

Daughter went back to school today.  She is supposed to try and lead a normal life for the 18 months that she is on maintenance chemotherapy.

She's doing a phased return.  She was there for 4 lessons today, so most of it.

She's had to go back into the year below because she's missed so much school, although she has been put into a form group with another girl who had ALL when she was younger and was held back a year.  At least she's not alone.

I picked her up and already her joints are starting to hurt her.  Last time we tried school, her joints hurt, then she got a virus, then her leg swelled up so much she had to have the fluid drained off it in theatre.  She obviously wasn't up to it.  I'm really hoping this time is different.

I feel a bit fed up today.  Being stuck in limbo, not knowing whether I will be able to resume my normal life or not, is taking its toll.  I'm trying to throw myself into being a good housewife, especially now that our income is getting tighter, but I'm not great at keeping with it.  I start something, then keep finding myself sitting on the sofa, on the internet, eating Christmas biscuits.

I need to get some self control.

I could also do with a friend; I'm getting rather sick of my own company.