The NHS - I feel like I am walking through treacle.

I am so tired.

It is like we have been transported back 18 months with some of things that have been happening.

As far as hospital is concerned, because daughter is so far into maintenance chemotherapy she is considered to be at low risk.  At low risk of what, I'm not sure.  But her low risk-ness has not stopped her being very, very poorly over the past few days.

She has run a fever for over 3 days now.  They give her a paracetamol which brings her temperature down a bit, but then when the paracetamol wears off, it shoots back up.  She's never had a temperature this long in her treatment.  She's already had a week of oral antibiotics, and now 3 days of heavy duty antibiotics.  She's been very sick, and I've been transported back to some pretty heavy going caring duties.  

(NEVER do give paracetamol at home though, cancer parents, unless you have consulted your hospital as it masks temperatures and if you are at home and dose them, you can hide fever which is a serious symptom, especially in neutropenic patients.) 

Unfortunately, there was no room in the teenage unit for daughter, so we are in isolation in the children's ward.  They are so overstretched, and I am once again finding myself frustrated over her care.  I know this is not their fault, but it does not make it any easier to be on the receiving end.  Some total idiot in management has decided to cut 3 beds on the unit, essentially removing a nurse.  The problem is, the unit is always full.  Daughter sent them over numbers, and a night into her stay they were full with 6 more patients coming in for treatment.  Management might think this is just a fluke, and that it will drop off again.  Except, I have been on this ward at all times of year and it has always been full.  The nurses say the same thing.  

Let's hope the person that made this decision never be in a situation where their immuno-suppressed child is left sitting in their own waste whilst their parent tries to frantically sort them out in a room with no curtains to protect their teenage modesty, and nobody able to stay longer than 2 minutes to help as they are too busy with far worse cases on a children's cancer unit, eh?  Maybe if they diverted some of the funds that they spend on infection control posters into nursing staff, they would find that infections decreased.  

I work in education, so I am always amazed at what government controlled institutions, like the NHS, can find money for when the one thing that none of them ever seem to be able to afford is more on-the-ground staff to make the whole experience so much better and safer for everyone.  Buffet lunch at the meeting, anyone?  Artwork for the offices?  Let's employ another twelve matrons/leaders/mid-ranking managers on 40-60k salaries who do nothing hands on, but are very good at directing all the people who do to spend even more time filling in pieces of paper.

It was crazy, I was running around trying to get help, accutely aware that last time daughter became seriously infected it was a life or death situation, but the doctors were too busy doing paperwork (I'm not stupid, I know this is important, but surely there should be a rank system in terms of urgency?), and I saw some of the nurses making patients' breakfasts.  I would have thought having a healthcare assistant to do that would be a better use of resources.  If daughter ends up critically ill, that must be more expensive to the NHS that employing someone on a Sunday to make the toast?

I have relatives who work in the NHS.  Everyone know it is SHIT if you are in there ill on a weekend.  I was told I couldn't have an epidural in labour on a Sunday because the anesthetist would not be available, except in emergencies.

Britain: a national healthcare system not to be beaten, 6 days a week.  We all rest on a Sunday, and that includes you, sick people.

I am hugely appreciative of National Health.  It should be global.  But I am not hugely appreciative of the people taking home the massive salaries who make decisions on how to run it, who seem hell-bent on running it into the ground.

Anyway, I must go.  I am sorry this is a rant, but anyone who has spent as much time in the system as me would surely start to see the very obvious flaws.

Nurses, I salute you for having to work in the conditions that you do.  I am sorry, it should not be like this for you.  If I was the emperor, you would have far better pay, there would be better working conditions, and you would not have fifteen bureaucrats above you making your job increasingly ridiculous.  They would be too busy being trained to give practical help and lending a hand in the busy times... 

Back in hospital

We came in on Thursday night as daughter had a fever and had been confirmed neutropenic earlier in the day.

We've had a very rough couple of days where she has run a fever in spite of medication, and been sick also in spite of medication.

I am just hoping that they work out where this is all coming from and that we see a change in her today.  She's now on some IV antibiotics after they kept changing their minds about what to give her.

Hospitals are not much fun, and I am carb-loading like a marathon runner.  Stress is the enemy of my diet.

Worried, tired and wishing this wasn't our lives.

Eek

7 months until we go to Disney, and I have so much to sort out between now and then.

We are staying here:

http://disneyworld.disney.go.com/resorts/animal-kingdom-lodge/

It looks amazing.  It is our 'once in a lifetime' holiday to celebrate daughter finishing chemo.

I am lucky I have not had to sell a kidney to pay for it.

Yet.

Gah

We are home and facing one of those days where I have to find homes for the ton of stuff that we got given at Christmas.  I am sure it multiplied in the car on the way home.

The district nurse came at 8am to take daughter's bloods.  She has a check mid-month to make sure that her chemo doesn't need adjusting.  This was a bit of a shock to the system as we've all got into that dangerous habit of going to bed at 12 and getting up at 10 or 11.  Normally, we settle in at 9pm as husband has to be up at 5am.  Last night was interesting - lots of under-the-breath swearing as he couldn't get to sleep.  Then you fall into that dangerous pattern of over-thinking why you can't sleep, and counting down to when you need to be up.  He must feel pretty shocking today.  I struggled and made myself get up at 7, and now I am procrastinating as there is so much to be done, but I'm tired and want to sit on the sofa finding creative inspiration and doing as little as possible.

Daughter had her bloods done and went back to bed.  Ah, to be fourteen with none of the responsibility.

I managed to do a little crochet yesterday in a nod to my do something creative every day.  I will make some time today.  If I manage to get sorted out, I might get a chance to open my sewing machine.  I must admit, I am a bit afraid of it.  I am a complete beginner and my brain struggles with new things at the moment.  However, I am determined to learn and now that I have a shiny new machine, I have no excuses.

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.