Approaching the new year

2013 will be the year that daughter finishes treatment.  She will have a final bone marrow in April to check the disease has gone, then that will be it.  Done.  2.4 years later.

Then we pick up the pieces of our lives.

It is interesting to me that people keep giving me 'lucky' things.  I have been given lucky trinkets and a beautiful little waving cat that I think is Chinese, and I am now the proud owner of two rather splendid laughing Buddhas.  I have been told that I need to feed my Buddhas in order for them to be lucky.  That figures: I don't function brilliantly without food either.  

I have been on a bit of a journey this year.  Having something so dark happen to your family forces you to reassess.  I hope that you aren't reading this and eyerolling at how cliche it sounds.  It is cliche, but I am finding it is because it seems to be the truth.

I have been reading self help books and popping ADs, I've even delved into the muddled depths of spirituality.  One thing I am noticing is that many branches of thought -whether mindful and rooted in the present, goal-orientated and aspirational on a material level, or tapping into the wavelength of some higher authority through religious/spiritual connections - all regard people as more fulfilled when we are being creative.  We do best when we are making things.  I see truth in this too.  (Don't laugh.)  I taught myself to crochet this year and it has been very soothing to sit and hook through some difficult times.  Last year, I really enjoyed making little felt decorations in hospital with daughter when she was in with a nasty infection just before Christmas.  

Of course I am not saying that your child has cancer so you should take up knitting and all will be well.

What I am trying to say is that having bad things happen to you takes so much away.  Sometimes it is nice to try and put some things back for yourself.  The things that you make aren't of comparable value to what is happening, but the process of creating something is another therapy, another thing you can do for yourself to weather the horrors around you.  Leukaemia treatment is a slow, painful process.  It is nice to feel like you can do something, anything, when most of what you feel is powerlessness.

So, I am being creative.  My new year's resolution is to try and create something every day.  I am not promising to be faithful to this if anything else bad happens - I can only come to this resolution 2 years down the line.  I would not have been able to do this in the early days .  I couldn't even read a book in hospital when she was first diagnosed as my brain would not let me.  This is the end of our journey (I pray) and us moving on from this thing that has tried to take away so much of us.  

I have been bought a sewing machine for Christmas, and I haven't ever really learned to sew properly.  I also write occasionally.  I am looking for something to add value to my life as I feel fed up a lot, and these past two years have shown me that getting all of my sense of accomplishment through my job is unhealthy.  I could lose my job in a heartbeat, and where would that leave me? (This is not about my family - of course I love and enjoy my children, but I have always wanted something for myself too.)

Hoping 2013 is a kinder and more creative year for all of us.  Happy New Year.  

Back to work and hairy issues

I have returned to work, thanks to medication and a rest.  I am hoping that this time will be better.  I am still very up and down in myself: the stress is working its way out.  I have been living on edge for months now and it has finally taken me over.  I think I am on the mend though.

Daughter's chemo is now at 75% of a full dose as this is all she can tolerate without her counts repeatedly dropping below what they need to be for her to keep taking the pills.  She is looking a little better and her hair is crazy now.  It is very dark and thick, and difficult to tame.  She loves having it back though!

Last week we were worried that she was losing it again - this can happen, even later into maintenance chemo.  However, we think it was just the fact it is longer now so when she naturally loses it it is more noticeable.  I am relieved as I wouldn't want her to have to go through that again.

4.5 months to go.  

Today I am grateful for:

Leftover mushroom stoup - yum.
All those kids I know ;-).
My excitable 3 year old getting mentally prepared for his birthday.
Nurse Jackie - I bloody love Nurse Jackie, although I am sad that the season has ended.
Crochet.  I taught myself in Summer and my first big project (after the one I rejected part way through) looks like it is coming together.  It is bright, colourful and soft.  I love it.


I am not grateful for the fat cat who has taken up residence on my ironing board.  So, I have a hairy daughter in the best possible way, and a hairy ironing board in the worst possible way.  

The cat is looking very pleased with himself.   

Remember when I said I was grateful...

... for my parents picking the children up and taking them away so I could crack on with the Christmas prep?

Remind me of that in a couple of hours when I am firmly into present wrapping territory!!

It's also son's 4th birthday on the 16th and we shall be descending into overcrowded, chaotic soft with approximately twenty 1-6 year olds merely 9 days before Christmas.  It will be mental.  I will need to lie down afterwards.

Daughter won't be allowed to come to soft play.  Don't pity her, she is nearly 14 and is much happier at home.  I am a little jealous!  It is too busy and we want to avoid big crowds near Christmas so we don't risk her catching an infection and being an inpatient over the holidays.  

This year we are going back to the parents, over an hour away, for Christmas so am hoping that 1) she stays well and 2) it doesn't snow.  Driving there in snow a couple of years ago taught me I never, ever want to do that again.  I am a snow wuss.

Hoping everyone else is enjoying (ha ha) their Christmas prep.  If we manage to get on today, I will be treating myself to Christmas Market - without nattering children - and hot chocolate tomorrow, followed by Christingle.  

I am not religious, but I love the Church at this time of year.  I see Christmas as a time for gratitude and reflection, as well as hope for the year ahead.  I also think it makes me feel part of something bigger, and that often gets a bit lost among the present buying/food shopping/wrapping/celebrating.  I like to be connected.  Without wanting to sound trite, I am someone who hopes I show that I genuinely care about other people and I try to be a good and kind person.  Being in a place with peace, and candles, and community where we remember a figurehead for this - real or not - is a nice reminder of my values.  It is also a bonus that son will still be with my parents so I will not have to beast-wrangle for the duration of the service as I did last year.

A peaceful and joyful pre-Christmas weekend to you all.  May your present wrapping be swift and painless and your Baileys' glass full.  

Gratitude

I am trying to drag myself out of my miserable place. One way is daily gratitude. Yes, things are pretty shitty for us but I have to remember what we have that I should be grateful for. 

 So, 

 1. My children sitting with me, lit by twinkling Christmas lights, in a warm home watching a film together. 

 2. Good food cooking on the stove for tea later. (Vege stew, yorkshire puddings and quorn sausages. One of daughter's fave teas.) 

 3. My cats going insane for the new catnip toy I bought them, that was supposed to be for Christmas but they were after it the moment that I brought it into the house earlier. 

 4. My parents are picking up the children tomorrow so that husband and I can have a weekend together prepping Christmas. I am very excited about this, even though I am paling a little at the number of presents I will be wrapping by myself. I've no doubt that husband's contribution will be tea-making and mince pie consumption. I might go wild and have another Baileys. 

 5. Baileys. I am very grateful for that. With milk, over ice. 

 6. I am also very, very grateful for mince pies, although I am not sure the scales will be when I get weighed on Saturday at Slimming World. 

 7. Mumsnet. I love it, especially the wonderful people who try to keep me afloat on the children with cancer thread. I started it nearly a year ago now. Part of me is sad that there is a need for it, but I am very grateful for the company of some amazing women on there. Strangers brought together in adversity, sharing the best and worst of times, there to listen to things we can't say to our nearest and dearest. I am praying for wonderful Christmases for all of them, that their children get some respite from illness so that families can be together in their homes, where they belong. 

 I have a lot to be grateful for. 

Being forced to reassess

We are approaching the two year mark since diagnosis, with 5 months of treatment remaining for daughter.

At the moment, she is worried as she seems to be losing hair from the sides of her head.  I know it is possible to lose hair again later in treatment, and am praying this isn't happening.  Her hair is finally growing down around her ears so it is the longest it has been since the beginning.  I'm just hoping that the hair loss is normal, but more noticeable to her because of its length now.  She's already lost her hair twice and her eyelashes several times.  She also gets a huge amount of grief at school: 'is it a boy or a girl?' being a daily occurrence.  Teenagers can be such a delight.

This whole situation has hit me hard, and I have finally given in to some pretty serious anxiety related illness.  I'm currently dosed up on a different AD and trying to settle down.  It is making me have an existential crisis. What do I really want out of life?  The places I was heading to and the things I wanted to achieve have been swept away and it has left me feeling quite down.  

Don't get me wrong, the most important thing is always, and has always, been my family.  If I lost everything, it could be replaced, but daughter couldn't.  Many parents also lose their own health during this time, and I have been told many marriages fail when a child goes through cancer treatment.  I can understand it as it does change you all.  I am very, very lucky to still have both my children, my health - to an extent, and my lovely husband. 

However, I can't help but feel very sad that our family will be punished for years to come because my daughter has had this illness.  I have already lost earnings and potentially could lose a lot more.  I have already taken a backwards step in my job and now might have to take another.  I am scared to death that in a profession that favours the young and dazzling, I will be left behind and never get back what I'd achieved, let alone move on from that.  We should, at this point, be doing really well financially and we should have been able to move out of the house where we live into something bigger.  Now, all we have is a big mess to sort out.

So, I am looking for a readjustment, a rethinking of how I view my life.  I've even been searching out some spiritual advice and have found the writing of Eckhart Tolle very helpful.  I am trying to be more mindful and trying to stay in the present.  Perhaps me fighting against the inevitable is what has made me ill, and if I just tried to accept and act as things arose, life would be easier for me, and, in turn, my family?  

I've also found a lovely counsellor and it is helping me to see I still have some choices in the situation I am in, even if they aren't all easy ones.

Anyway, I will leave you to enjoy your Saturday evening.  The Christmas tree is up, and son and I are watching a naff reindeer film by the twinkling tree lights.  THIS is what matters.  (But I'll still hope for that lottery win.)