Monday, 8 April 2013

If you ever want to ask me anything

I know that a few people read this.  If you are ever here looking for information about anything or for a particular experience of something, just leave a comment.  Even if I can't help, I might know people who can.  

Crawling to the finish line

So we have just over a week of chemo tablets to go.

Daughter had her final spinal chemotherapy and bone marrow last week.  We haven't heard back from the bone marrow, which is a good sign.

We have to have a meeting with our consultant to talk through what happens next, though I'm aware she will remain a patient for at least 6 months.

I'm starting to actually look forward to our holiday now, even though I still have to try and find some travel insurance for us to go.  We have certainly earned it.

These past few years have been really, really tough.

Wednesday, 27 March 2013

Today is the day then

Today she has her final spinal chemotherapy and bone marrow aspiration to make sure the leukaemia is definitely gone.

I see no sign of the disease now, although we are all a little nervous still I think.

She has another month of chemo tablets to take, then she's finished.  Next, we attend a big meeting about what happens in the future.  I know that for the next six months, she will still be considered very low immunity and be under the care of hospital.

I will be very glad to see the back of chemo, but also very thankful that it has saved my daughter's life.

Thursday, 14 February 2013

10 weeks to go

We are on a 10 week countdown to the end of treatment.

Keep everything crossed that her final bone marrow will show that she is finally clear of leukaemia.

I am very much back at work at the moment, hence my lack of posts.  

Sunday, 13 January 2013

Ah, so that explains it

Daughter was diagnosed with Influenza B on Monday, which did explain why she was feeling so shocking.  However, she was a bit miffed that she'd had to have a flu jab that didn't work.

She came out of hospital on Wednesday, but she had to go with her Dad so that I could work.  I've not seen her since, but she is apparently still feeling very, very tired.  I suspect it will be a long time until she feels more normal.  It will not help that she is due to have vincristine and have blood taken off her this week, which I think will really wipe her out.

I'm struggling with all of the things that I have to do.  There seems to be so little time and life is relentless.  I could sleep for a month!

Trying to run a house and family, work full time and deal with a child with cancer really takes it out of you.

Oh, for a fortnight in the sun.  By myself.  ;-)

Tuesday, 8 January 2013

Influenza B

We have a diagnosis then.

It's amazing - as soon as they said flu, it all fit into place.  We just didn't look for it as she'd had the flu jab.  She's through the worst now, but she's still in hospital for another day so they can make absolutely sure that her temperature stays constant.  Then she will go with her dad.  She's so weak, and I think it will be some time before she's more normal.  This will not be helped by the IV chemo that she is due to have next Thursday.

I am feeling so fed up for her, and for us as a family.

I am wishing with all my might for a windfall so that I could take some time away from work and care for her, rather then shipping her off to her dad's because I've missed too much time and I can't afford to take more.

I am feeling run down, tired to my bones and like a dreadful excuse for a parent and employee today.  Once again, I can do no right.


Sunday, 6 January 2013

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.

Thursday, 3 January 2013


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

We are staying here:

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.


Wednesday, 2 January 2013


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.