A thought

It may seem a random thought but, I am an avid reader of history. Many years ago in my teens I studied epitaphs at school. I wonder what type of epitaph bureaucrats would like receive, those who ‘followed the rules’ and the people who did not care, those who do not care.

 I wonder what thoughts went through the famous dictators of this world. What did Joseph Stalin think as he lay slumped in pool of his own urine for hours on end calling for his body guards to help? They did not come for fear of disturbing the dictator. Lavrentiy Beria, Stalin’s henchman,  had to have a rag placed in his mouth to silence his bawling before he was shot, I will not describe the deeds the man did they are so vile.   

Even the most harden, demonic people in history have had to face themselves in the moments before death.

The broken silence

This blog was and is meant to share with the world what life is like living with a child with cancer and ALL its consequences. I have many reasons for not writing since last last Thursday, the reasons range from emotional  pain and strain through to stress and feeling low.

This time of year is hard, for me it as time of reflection, a time to look back and look forward, I have have no idea what the year ahead will bring, it will be hard, challenging, tiring, frustrating and so much more. I only hope we have the strength for it. 

I live in a world where every word, expression, pause, look, can and will be read. Actions or in actions will be noted. I live in a world where every phone call, movement, change in temperature, breath is noted everything is under the microscope. Everything my family and I do is measured. I try not to look back and think what have my family and I have done to deserve this. As a wise woman said, this is an unhealthy and destructive way to think. As a woman said 2-3 months in is when things start to hit home.

Swap, see what it is like to suffer from sleep deprivation, live on nerves, yet have to remain calm in every situation, be measured in every response. I find it ironic that few people now give advice, it is easy to suggest, state, infer, what would they, you do? What would you do in my, our situation?

Here is glimpse into the past of 10 days. My wife has been suffering from severe headaches. A few nights ago we were up EVERY half an hour until 11.55pm checking our daughters temperature watching it creep up from 35.9 to 37.4 degrees dreading that another 0.6 of a degree and it would have meant phoning the local hospital, our fear was that if it gone to 38 degrees and held there for 1 hour our daughter would have gone to hospital. Added to that within the past 10 days MLG have 3 blood transfusions (red and platelets), one CT scan and a phone call to discuss IF Mlg will be having radio therapy. Mlb a has had a cough and cold which he gave to his sister, Mlg has had a bad cough, her immune system has been zero. My daughters Hickman line has been mucky and oozing (a sign of possible infection and not healing) the dressing has had to be changed regularly and I have heard the distress she has been under every time the dressing has been changed. There have been other things that have been going on which I choose not to share, they are too close to heart.  My question to you is how would you cope? Cancer spreads and its many effects are hidden.

As I read this back I see the frustration and fear that is in side me, inside my family. My daughter is well at this moment in time, yet who knows what the next second will bring.

Anyone want to swap?

Going to the bank for a withdrawal

Some people go the cash point to get out money, yesterday evening I went to the blood bank with my daughter to make a withdrawal from the bank, the platelates were transferred within the hour, then back home for TV and cuddles.

Brotherly love

The family was waiting for my son to come home from his second day at school, as soon as he entered the house he took off his shoes and ask where his sister was  (she was on the sofa sleeping). He then ran to her, climbed on the sofa, gentley stroked her head and gave her warm kisses, she woke up and then she started to scream for her mummy. Still he persisted and gave her a warm gentle cuddle, with a few minutes they were playing with a train set togther.

'I am already better'

I was watching TV with my kids, gave my daughter a kiss a said to her 'You're gonna get better', she replied 'I am already better'.

It has lifted, slightly.

And so the Sword has moved away, slightly, the CT scan was clear. Our Little Girl and Boy sleep at home.

No words or emotions ....

Over the past few days the family has noticed that Mlg has been losing her balance (and that’s where it all started) a call was made to GOSH and we were ordered to go to our local hospital. My daughter was assessed and she had a CT scan. I am not going to explain or describe the emotions my wife and I have been feeling, only say that once again the Sword of Damocles hangs heavily over our head as we await the results. Our little boy returned from his first full day at school not to be greeted by his parents but by others and now sleeps not in his home but another while we await the results.