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.)

Even if you cannot hear my voice

For those who have not survived this year.  For those we loved and have lost.  For the parents who will never hold their child again.  

http://www.youtube.com/watch?v=jS8IZcx7tJY

I have linked to this in a couple of places.  It is a song that, when I hear it, makes me think of all of us, huddled in hospital bays, praying that our child will get better.  It is cannulas in feet when there are no more veins in arms.  It is feeding tubes.  It is bone marrow transplants and months in isolation.  It is what we go through, sitting by their side, hoping.  And sometimes that isn't enough.

Much love to all of you, and such, such sadness.

The end of childhood cancer awareness month.  Please be aware, please don't be fobbed off by inadequate GPs or dismissive consultants.  If in doubt, FIGHT.

False Sense of Security

I think we have been lulled into a false sense of security by a couple of 'normal' weeks.  I've been working full time, as normal.  Daughter has been managing a more 'normal' couple of days at school.  Son started nursery. Husband working.  Everything as it should be.

And then, she comes home on Monday from her Dad's with back pain, it hurts when she breathes in, and she needs checking over at hospital - is the chest infection coming back?  Are we setting off on the road to pneumonia again?  They think it's just the chemo.  Everything is just the chemo until her temperature spikes, her counts drop and we are back in hospital again.  

Then son starts vomiting with a bug he's picked up at his new school.  And husband has to use his last days of holiday/unpaid  leave to stay off, to try and keep me in work  (He hasn't had a holiday this year at all - all time off was to cover illness).  But we are now on Day 3 of the bug, I am off as husband has got to go in.  Daughter has been taken back to her Dad's to get away from sickness.  

I am feeling fed up, like we are on the precipice of things going downhill again.

I managed 13 days in work without a day off.  

7 months of chemo still to go.  I just hope I am still sane at the end of it all as the continual worry/guilt/sense of failure is taking its toll. 

Difficult silence

We have lost many children over the past few months who we'd met through hospital.  

Just now I have found out another girl, who was on the ward when my daughter was first admitted and given her diagnosis, has passed away.

She was doing so well too.  

I am devastated.

Her Mum was so kind to us.  Imagine how it must feel to have to share a hospital bay with a family who have just been told their child has cancer.  She was so very kind, and thoughtful, to us that evening and her daughter was a very brave girl who had been through so much.  I will be forever grateful to her Mum for those early days we spent in hospital.  And I cannot believe that she, too, has now been cheated out of her child.  

This thing is horrendous.

And why is this post called 'difficult silence'?  Because she passed away a couple of weeks ago and we didn't know.  Because we don't get told.  Because nurses and consultants and hospital staff have to maintain this difficult silence of confidentiality.  We become like a little community, and the only updates come via the grapevine.

Don't get me wrong, I completely understand why they protect the patient and their families.  

It just makes me so sad that we couldn't do anything at the time to show how sorry we are that she has gone.  

How we have changed

We are ticking on along nicely at the moment.  

Husband and I had a conversation the other day about how cancer really has put us on a different path.

In terms of work, he was looking for opportunities away from where we live now.  This could have resulted in a move.  I was on the path to a job with much greater responsibility and pay.  Thanks to Money Saving Expert (which I can't recommend highly enough for people struggling with money/debt) we were on track to sorting our finances.  We were giving serious thought to having a third child.

Now, money is chaotic.  I'll be honest, I struggle to get a grip with it and can be very over generous with the kids and family.  I am trying to reign this in as I need to save for holiday next year.  I am trying desperately to keep the job I have, let alone get a promotion.  That won't happen whilst we are still on treatment, and not for a while afterwards.  Husband feels unable to apply for jobs further away in these uncertain times.  I don't think baby 3 will ever happen now.  I am tired to my bones.  This makes me feel so incredibly sad.

It feels like we have had so much taken from us.


Of course, I am grateful we have a house, and an income.  And most of all, I am grateful that I have two children here with me.  We can hope for good health in the future.

I would still rather it had never happened though.

Teenage Cancer Trust

Please sponsor this wonderful lady as she runs in memory of her daughter:

http://www.justgiving.com/Billiegirl

Advice for parents of newly diagnosed children

This is advice for parents of newly diagnosed children.  These are some things that I have learned:


Seek out some support for yourself where you can be completely honest about how you feel: you will hold back your fears, around your child (of course), but possibly around relatives too.  If you want to question, and deal with what-ifs (if you are that kind of person, some of us are, some aren't) then you don't need to be told not to think about that, or to stay positive.  It can help to have somebody who will listen to your fears.  Voicing them will not make them come true.  But it might help your head.  We were given a CLIC Sargent social worker, who has been wonderful support for us.  But, a counsellor could also be helpful.  See your doctor.  Or, find a spiritual ear.  All hospitals have non-denominational chaplains to talk to.

In fact, see your doctor anyway.  You will need that kind of support.  As time passes, you may need sick notes, or help with forms, let alone any medication that you might need.  I'm not saying that this is a given, but please remember pills (sleeping/mood) are there if you do need them.  

For the stay in hospital you need plenty of water to drink and hand cream.  I dried out so much from alcohol hand gel that my hands got covered in a big rash which cracked and bled.  Not much fun.  Also, try and get out for some air at least once a day.  It is scary to leave - especially if you are waiting for doctors/treatment/tests/test results - but the nurses are there, and possibly other staff - like social workers, play workers, etc - so try and get yourself a break. 

Keep a notebook.  You will get told different things by different people.  For me, it was the most difficult and frustrating part of being in hospital.  I was sharing care with her dad, and each time I'd come back in, something different had been said.  For example, a consultant would say, she needs a transfusion, then Sister would come along and say they couldn't do it that night, so they'd wait, then she would order blood tests and say she didn't think she needed one (even though counts were same and consultant wanted it doing), then consultant would be back two days later wanting to know why it hadn't been done...  Believe me when I say, I fought and argued, but you get sick of being looked at like the difficult parent.  And I could have taken it further, it is easy to think back over the things that happened and say, I should have complained (the example I gave is mild), but you feel beholden to these people, you essentially have to live there, and the next thing always comes along before you get a chance.  I should have written everything down, so I could clearly argue my case should I have chosen to.  It would have given me more control in a situation where I felt powerless; it would have given me a record for when I wasn't there (if dad had done it too), and it would have been helpful to have my own notes to look back on as treatment progressed.  

If you do need somebody to speak up for you in hospital, contact PALS.  Every hospital should have this patient liason service.  They are there to act as a mediator if you feel staff aren't listening to you.  

Get ear plugs.  I wish I had.  Hospital bays are very noisy places at night. 

Take some creature comforts for you: your own towel, perhaps your own pillow and blanket.  We bought a mattress topper from Argos to cover the fold-out bed.  It made it a little better.

You should be entitled to DLA.  Get a form, get somebody to help you fill it in.  This will enable you to apply for a blue disk later if you need to.  It is extra money, it is disability benefit.  Forget how you feel about claiming benefit, if you are against it, as you will need it.  Hospital stays get expensive.  You will miss work, and if, like mine, your child has leukaemia, treatment lasts for a long, long time.  People's sympathy does run out, and days off become unpaid quite rapidly.  Apply for everything you can get.

Charities can also give you some financial support.  They raise money to help people like us: it is the reason they are there.  If you need some more help, ask them.

CLIC Sargent also have volunteers.  When you get home, if you need someone to stay with your child so you can go to an appointment/the shops/just have a rest, then they have CRB checked volunteers who can do that for you.

Obviously, you will tell your employer, but tell your union too.  If you aren't in one, and can be, join one.  You might need their help in the coming months.

If your child has leukaemia, which is a critical illness that lasts for longer than 12 months, you are covered under the disability act as their carer.  This is important to know for entitlement at work.  You are entitled to 18 weeks off, unpaid, and this can be taken as daily increments, although you are supposed to give 21 days' notice.  But, you are also allowed to take 'emergency' dependent's leave.  A reasonable amount.  What that means is unclear, but you do have some rights and protection from the law. I hope your employer is compassionate and stays compassionate, but in case they don't, you do have some support.  If you don't have union, try charities or your social worker.  And remember you might have legal advice through your home insurance.

This sounds quite serious in places, but these are all things that I have worried about or encountered over the past 18 months.  If I think of more, I will update.  

Side effects?

Daughter has become swollen.  They've put her chemo up to 80% and her counts have plummeted.  We are at home waiting the results of lots of tests.  They are looking at her thyroid, her kidneys and tomorrow she will have an ultrasound of her liver.  She had a scheduled MRI at the start of the week to test the state of the iron overload she has in her blood - whether this is affecting her organs.


They have to have the medicine, but the medicine is dangerous.


I keep looking around me and wondering how the heck this is now our life.

Update

I've not posted for a bit because it is difficult to at the moment.


Daughter's chemo was reduced because of repeat infections.  She's been better in herself, but her counts are now higher than doctors would like, so dose will be going back up.  It is a roller coaster of numbers; a fine balancing act trying to get them in the correct range.


I can't talk about work now.  I have to go; I wish I could afford to stay at home.  The guilt is difficult and the pressure is starting to make me ill.  I do wonder where I will be when we finish treatment in a year.  


It is a long, hard slog, the treatment of leukaemia.  It is always there, being a darkness in the corner.  However normal I can pretend life is, it is only ever for a minute.


They say we have the worst of times and the best of times.  I hope this is her worst of times.  She deserves to live a charmed life from this point onwards, after all she has endured.


Sending love and best wishes to you all.

For my friend

Please have a look:

http://www.youtube.com/watch?v=wKvqp1LILRM&feature=g-upl

The internet empowers daughter

Much of this blog has been one point of misery and despair after the next.  Unfortunately, this has been our journey.  It does not mean that another child will have the amount of infection/hospital stays that daughter has had.


Anyway, one thing that has been a positive side of the last year is the internet.


I am incredibly thankful that, throughout huge periods of isolation, daughter has essentially become something of an internet celebrity in her own right.  


She plays on an much-advertised, international game.  She has been on the leader-board for months.  Though, in fairness, she does have a lot of hours spare!  I remember reading a book about excellence being cultivated by so many thousand hours of time spent honing a certain pursuit.  She is very, very excellent at it!


I will give you an example: she created a profile page on there 3 days ago, and so far it has had 93,000 page views.  That's a bigger circulation than my local paper... although, her profile is probably more interesting (sorry paper ;-) ).


She has a blog (89 followers, 13,000 page views) and she and I have started to write some short stories for teenagers as her peers seem to like that sort of thing, and we both enjoy writing.  (I will admit, she is much better than me!)


If you want to read, shameless plug, it is called 'dark days and dreadful nights': 


http://darkdaysdreadfulnights.blogspot.co.uk/


These figures I am citing may seem like small fish in the international waters of the internet.  I am pretty impressed by them though.


So, take a girl with cancer and give her a laptop.  She now has people fighting to be her friend; she has gained confidence and self esteem; she has hardened her shell too when she gets the occasional nasty comment or situation.  She is far from stupid: she knows the rules of internet safety.  This experience has allowed her to develop her own likes and dislikes, to formulate her own moral code (she has written blog posts slamming evidence of discrimination against women, racism), and to give her back her self-esteem after what has been a horrible time for her.


I am also proud of the comments she gets from peers, who tell her she is "kind and approachable" unlike other leader board figures.  (Ah, the politics of a virtual world.)


For once then, might I be a parent who is happy her daughter spends hours on the internet?  I am thankful for it.  It has given her a social life that real life has tried to take away from her.  


It has empowered her when she feels most powerless.

Sick, sick and more sick

I am off again today as I have tummy bug, thanks to daughter who picked it up at school yesterday.  
We've been ticking along recently.  Her counts are a bit higher, but they have dropped her chemo dose down.  I'm not sure what this will mean for her leukaemia though.
We've booked a huge holiday to celebrate the end of treatment next year.  We're taking kids to Disneyland, Florida, staying in Animal Kingdom Lodge.  I was so excited when I booked it, although a touch daunted about finding the cash.  We will be living on beans for the next 15 months!  We wanted something to be excited about after what has been the most difficult couple of years ever for all of us.


On a sad note, we lost a little boy who we knew from clinic.  I am so very sorry for his parents.  he was a lovely, lively little chap and it once again reaffirmed how cruel this illness is.  We've also heard of other children who have had bad news in terms of relapse and survival.  :-(


It is difficult unless you are a cancer parent to understand the stress you go through being surrounded by this world.  My life is a mixture of pretending to be normal (attempting to go to work, shopping, cooking, washing) juxtaposed with a stream of hospital stays, extreme worry and bad news.  


I feel a little bit sick most of the time.


Except today, when, because of the bug, I feel a lot sick.  

No shit

http://apps.facebook.com/theguardian/society/2012/apr/30/teenage-cancer-trust-survey-delayed-diagnosis


Read with interest.  This has been a problem for nearly every patient that I have met, both from the teenage and children's cancer wards.  It is not good enough.  So many of the parents are dismissed by their GPs as overprotective loons.


I realise it is hard to identify cancer in a child.  However, if you have a parent repeatedly telling you that something serious is wrong, it might be an idea to listen to them and trust their judgement.  True, some might be attention seekers.  However,  if pandering to them means that genuine cases are referred quickly, then it is a cheap price to pay.

Pneumonia and a very sad loss

We are on day 6 of the very heavy duty antibiotics.  It seems that daughter's temperature has calmed down a bit, though her chest is still very noisy.  She does have pneumonia, so she is going nowhere until we know it's beaten.


A girl on the ward died.  We knew her and her mum.  I held up in front of daughter, but as soon as I left hospital to come home (it's her dad's turn to stay), I cried all the way back in the car and for a good couple of hours after that.  She was a child - a beautiful girl with everything in front of her.  She had fought with this illness for years.  It is so very cruel.  


My thoughts are with her family and her friends.  I am very, very sorry for their loss.  

Tough time for cancer parents

I catch myself on the verge of tears all the time with things that don't normally bother me, and that's on the 40mg of prozac!

One thing I will say is that we have had a horrific time. It's like at the moment, hospital downplay it so you don't feel like it's that serious. But the reality is DD has febrile neutropenia and pneumonia, 4 bags of blood, 1 bag of platelets, feels shite, keeps throwing up in spite of anti-sickness, backache and headache requiring codeine. It is pretty serious. I feel like a zombie at the moment, I'm so out of my head with lack of sleep. 

We are chugging through these experiences for months and months with our children. I'm surprised more cancer parents don't have total breakdowns when the coast is finally clear and you are allowed to focus on yourself again. It is a toxic situation: we are storing up untold amounts of stress. I keep dreaming about the time DD had to have cannulas in her feet because her arms were too bruised to take any more. It's shit. But you repress these experiences and don't deal with them because the next thing to worry about crops up before you get a chance. 

Update

We are very much in hospital then; they are testing her for a number of things including pneumonia. They've told me not to worry, but she is feeling pretty grotty and every time the paracetamol wears off, her temperature shoots up. She has what is called febrile neutropenia, which is why she has to stay in. They have yet to get to the bottom of what is causing it. 


They are currently loading her with antibiotics and taking loads of blood samples. I'm still waiting to get a date for an MRI of her organs in relation to other new condition she might have, so I might try and wangle that whilst we are here as it's more likely to get squeezed in if she is an in-patient. 


On the plus side, after 3 bags of blood she is looking much pinker, and she's having another one tomorrow so she'll be practically glowing by then!  

Blummin bugs and chest infections

So, the bug that daughter had has persisted beyond 10 days of antibiotics and once again we are back in hospital.


They think she has a chest infection.  Her temperature had gone up to 40.4.  They want to do an Xray, but we have to wait until all the drunks have gone from A&E.  Doesn't it make you despair?


I think we are looking at at least 5 days in on IV antibiotics (the routine for patients if they have infection and are neutropenic, which daughter is again at the moment).  


I've had two hours' sleep as I was doing work until gone midnight.  Joanne Blogger: surviving on tea, pizza and sheer bloody determination since January 2011.

Race for life

Just because it helps me to feel like I'm doing something:

http://www.raceforlifesponsorme.org/team-abigail

A glimpse of what it is like

When they are ill enough to be in hospital, it is clear cut, but when you are trapped in that limbo of normal temperatures but feeling really rough it is so difficult to know what to do.


Daughter went to stay with parents on Saturday.  We stayed overnight too, but came away Sunday morning.  Left son too.  My Mum works full time, so has precious few holidays to spend with them.  Phone call on Sunday night at 8pm to say daughter was running a very high temperature.  So, 2.5hr round trip to pick her up and take her into hospital.  She was finally allowed out at 2.30am as counts weren't too bad and temperature had dropped.


I went to work on 3 hours' sleep on Monday.  (I've also done a total of over 20 hours from home on evenings and weekend since Friday, so a very, very busy week.)  Worked Tuesday too, only to get call from hospital to say that a bug has grown in cultures taken and she will need antibiotics.  Is she ill enough to be admitted?  They ask me.  I'm so very qualified to make that decision!  I say, she's been well enough to leave at home, just very tired.  So, 1hr round trip to hospital to collect a course of antibiotics for next 10 days and she can stay at home.


Get up this morning to get ready for work (I don't get paid for days off), and she looks shocking.  I can't leave her here all day by herself.  Maybe she will need to go in after all.  Temperature is still normal though.


I run into work quickly to drop things off.  And I am so jealous of everyone who can take for granted how they park up, come in, work a day, get paid, go home, work or relax or spend time with their family (their call) and not have this constant grey cloud hanging over them.  The continual worry.  Am I letting her down by going to work?  How will we pay the mortgage if I don't go to work?  Am I letting work down by staying at home?  How will I ever catch up and get back on track, as when this is finally over so many pieces will need picking up and putting back together.  We have to regather this fragmented life.


And poor husband is already on 10 days off.  That leaves 15 for the rest of the year.  Will that mean, once again, no break for him?  Our life is one big sickness and it is unrelenting.


Clinic tomorrow though, and waiting for news on liver.  They want to MRI her (again, I think this will be 3rd or 4th now) to check her heart.  Worrying.  Hopefully they will shed some light on what is happening.


I am going to intersperse this blog with jokes or pictures of Garfield as it is far too gloomy.  Sorry.  Big fat pity party.


 

Bad juju?

I am once again starting my day having to phone in work.  Daughter has some kind of virus; she is feeling really wiped, sick, and her temperature has been creeping up.  I need to keep a close eye in case it goes past 38, which is the 'warning' level for cancer patients and it means that we need to contact hospital.  If her counts were low too, it would automatically mean hospital.


Son is still getting over the chicken pox: we've had some nasty ones that won't heal.


Husband now seems to have crappy virus too, so I can't leave him to look after them in case there is a problem with daughter and she needs to be taken in.


Sigh.


I must have some bad juju in my house.  I'm wondering about getting a priest in to exorcise it.  Or about waffing some sage about for a good cleanse.


I have no idea how we manage to continually attract such crappy health.  I could understand it if we ate piles of rubbish (ignores two pizzas from last week... bad example) and were really unhealthy.  We aren't.  We eat lots of the 'right' food (plenty fruit, veg, OJ, wholewheat, largely vegetarian with some fish) and get out and about when we can.  


Perhaps if I was mainlining vodka, smoking and eating Chinese all week, things would be better?  :-D

Feeling fed up

I really wish money wan't an issue.  I feel so rough this morning; I think I have a throat infection, and I feel very, very run down.  However, I've already missed two days at work with son and his chicken pox so I must go in.  I'm going to try and get a doctor's appointment later today.


I would love to run away somewhere hot for a few days and just be.  Maybe read and swim, and watch the sunset.


No chance.


How do you pull yourself out of a funk?  Prozac doesn't seem to be cutting it.  Eating a super healthy diet and exercising hasn't touched it.  Multi vitamins, omega oils: nothing.  Fresh air: not really.  I am being proactive, I am trying to feel better.  Why am I run down all of the time, and why, when things do let up for a second or two, does something else shitty happen that puts me back again?


It's very frustrating.

The dreaded chicken pox has finally landed

Son has the pox.  Poor little guy.  I'm going to have to come out of work unpaid whilst he's poorly, and I was only just getting re-established.  We were just getting into the swing of toilet training too.


Anyway, the hospital aren't too worried as daughter still has evidence of the antibodies in her blood from when she had it as a child.  If they don't have these, cancer patients can face several days of IV antibiotics in hospital in order to ensure they don't catch the disease.  It can be fatal.


I'll still be watching daughter like a hawk though as she did develop shingles recently - as did several of the children with cancer at our clinic - and that meant lots of antibiotics at home.


I am keeping my fingers crossed.

Liver problems

Daughter definitely has issues with her liver.  We are waiting for a biopsy so they can figure out what's going on.

I'm on half term already, having done my first week back at work.  I certainly feel more human than I did a couple of weeks ago.  I've lost about 17lbs in weight now, although I'm flagging a bit at the moment with my exercise as it's been an emotionally draining few days.  It's probably a good job it's the holiday, although I have a monkeyish 3 year old to entertain.  We are going to have a trek to soft play this afternoon.  Think of me please, it could well finish me off!

Happy half term to you all.

Liver specialist tomorrow

We are at the liver specialist tomorrow to try and figure out what else is going on with daughter.

It has been lovely to be back at work - busy, a touch stressy, but lovely.  I've had a purpose other than hoovering for the first time in months, and it feels great.

I'm not including my role as carer for daughter in the above observation.  That I will do whenever she needs me, as often as she needs me, without complaint.  That goes without saying.  And if she becomes ill again, then I will look after her again.  At the moment she is doing okay.

I'm just worried about what else might be waiting for us in the morning.

A stone down

I've managed to lose a stone (still 3.5 to go though), I've had my hair done and my nails.  I've not had my nails done in over a decade.  I wanted to feel a bit better for restarting work.  I've aged so much this year and I never make any effort with how I look: scruffy black clothes, hair in a bobble, old trainers, naff coat.  I don't think how you look should influence how others see you, but of course it does.  I want to return to work looking like I mean business, even though I'm going to be in knots inside.
Daughter is due to go and see a liver specialist at the end of next week.  We will hopefully get to the bottom of whatever is the other condition that she has.  Her counts remain low, but she's been put back on chemo so I don't know how she'll get on over the next few weeks.  I think her counts could drop lower still.  This will make her tired and possibly result in transfusion, let alone make her vulnerable to infection. 

Please keep your fingers crossed for us as we attempt to try and regain a bit of normality in out lives.

Getting ready to restart work

So, I go back to work on Monday.

Daughter's counts are still low.  She's okay in herself, but this makes her very vulnerable to infections.  They've put her back on chemo still, so I'm suspecting that this might make her counts drop further.

I think, when I go back in, I'm going to be worrying about her endlessly.  I'm already a bit of a depressive/anxious wreck as it is.  We need the money so I have to work.  We can't afford for me to be out of a job.  My employers have been so good with me, supporting me, and I've had over a year off now.  It's not their fault that the nature of the illness that daughter has means that she will need another year of treatment yet.  This is my problem, not their's. 

I just hope it goes okay.  I want to work for my sanity too.  Spending so much time in these four walls is not doing my mental health any good either.

The long, slow, painful, punishing burn of treating leukaemia...

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.

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 :-(

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.

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.  :-)

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.

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.

Misery?

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.

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.