Tomorrow the conditioning chemo starts.
Today Brett is trying to fit in visiting as many people as he can before lock down.
He's also trying to eat as much junk food as possible as that flys out the window with his freedom.
I sit here looking like a Buddha but with hair. I have joined in the takeaway gorge with Brett and am also quitting junk food as a way of supporting him.
I have to say I can't wait.
I never thought I would crave vegetables.
The nerves are building in the house. We are all twitching and snapping at each other.
Although I'm dreading it, I also can't wait to get started.
This horrible event has been hanging over us since his relapse in June.
You gotta get started to finish but as Brett says "that's easy for me to say. "
Wednesday, 31 October 2012
Thursday, 25 October 2012
Radiotherapy Consent
Brett is still at home but has had a plethora of meetings and tests to be completed before transplant conditioning starts.
I write this as Brett is at his ECG and Echo-cardiogram.
You may think its odd me merry blogging away whilst my son has an important test well firstly, he's not alone he has gone with his dad, secondly, he's had quite a fair few of these scans before so not only knows what to expect but could possibly perform the scan himself and thirdly I am typing as I wait for paint to dry in the grotty down stairs toilet.
Kev and I have managed to paint the upstairs bathroom and the downstairs toilet which we didn't entirely think through, as where are the kids going to go when they want to the toilet?
The weirdest meeting this week was with the Radiotherapy specialist.
He was a very nice chap but that detracted little when he started his 'speech'.
The meeting room contained myself, Brett, Kev and then the transplant specialist nurse, the radiotherapy specialist, the paediatrician radiotherapy doctor and another woman who was introduced but I cant remember why she was there.
The chap started talking general stuff, you know, the beige conversational starters to make everyone feel as ease. We're pretty used to those conversations in fact we very often start chatting first to new doctors who haven't quite mastered the art yet.
So the conversation eventually turned to the matter in hand -
Full Body Irradiation.
The good points are it destroys the body therefore helping the new stem cells take up their new residence. It should reduce the risk of his bodies rejection of the stem cells.
The bad points are it destroys the body.
The risk of dying increases numerous side effects later on in life can include, cataracts infertility, memory loss and reduced brain function and it increases the risks of developing other cancers.
Yes like chemotherapy, radiotherapy causes cancer.
Blimey.
At the end of the meeting there was the normal time for questions although we feel its better to sit quietly at the minute as we are definitely suffering from a bad case of too much information.
I don't care what could happen in the future, I just want Brett to have one.
Finally Brett went through the formality of signing the consent form.
We laugh about these consent forms, I know they are for legalities and ensure the hospital doesn't get sued but in our case what's the choice?
Well in Brett's case it's death.
We have the transplant consent to sign on Monday....just pass us the pen.
I write this as Brett is at his ECG and Echo-cardiogram.
You may think its odd me merry blogging away whilst my son has an important test well firstly, he's not alone he has gone with his dad, secondly, he's had quite a fair few of these scans before so not only knows what to expect but could possibly perform the scan himself and thirdly I am typing as I wait for paint to dry in the grotty down stairs toilet.
Kev and I have managed to paint the upstairs bathroom and the downstairs toilet which we didn't entirely think through, as where are the kids going to go when they want to the toilet?
The weirdest meeting this week was with the Radiotherapy specialist.
He was a very nice chap but that detracted little when he started his 'speech'.
The meeting room contained myself, Brett, Kev and then the transplant specialist nurse, the radiotherapy specialist, the paediatrician radiotherapy doctor and another woman who was introduced but I cant remember why she was there.
The chap started talking general stuff, you know, the beige conversational starters to make everyone feel as ease. We're pretty used to those conversations in fact we very often start chatting first to new doctors who haven't quite mastered the art yet.
So the conversation eventually turned to the matter in hand -
Full Body Irradiation.
The good points are it destroys the body therefore helping the new stem cells take up their new residence. It should reduce the risk of his bodies rejection of the stem cells.
The bad points are it destroys the body.
The risk of dying increases numerous side effects later on in life can include, cataracts infertility, memory loss and reduced brain function and it increases the risks of developing other cancers.
Yes like chemotherapy, radiotherapy causes cancer.
Blimey.
At the end of the meeting there was the normal time for questions although we feel its better to sit quietly at the minute as we are definitely suffering from a bad case of too much information.
I don't care what could happen in the future, I just want Brett to have one.
Finally Brett went through the formality of signing the consent form.
We laugh about these consent forms, I know they are for legalities and ensure the hospital doesn't get sued but in our case what's the choice?
Well in Brett's case it's death.
We have the transplant consent to sign on Monday....just pass us the pen.
Saturday, 20 October 2012
Unsociable Networking
I am in a funk.
I am angry and don't really trust myself around people.
'How's Brett today?' they text - when they can be bothered -
Transplant looms closer each day and hangs over us all like a huge dark cloud.
I am a huge dark cloud. I am finding it harder and harder to maintain my plastic smile to the world and fake that all is ok.
It's not ok........It's pants.
I am fed up with everything.
I have cancelled my twitter account because its a benign waste of time really.
I have closed my facebook account because, frankly, I am worried I will have a huge four letter word torraid to some pillock who moans it's hard doing the Christmas shopping.
I am angry and don't really trust myself around people.
'How's Brett today?' they text - when they can be bothered -
what could I reply...
"Ace, he's ace! he's so excited about all the excruciating pain and misery he's going through but your text takes all the pain away.
To think you've thought about us for 1 minute out of your busy life makes me swoon with gratitude.
So glad you texted, what's up?
Did you just finish the sudoko and have two minutes left of your coffee break? you dumb ass, you complete arrogant fuck wit, you poor excuse for a human being,
coz, if you really cared, you'd be here, if you really cared you would have visited at some point over the last 5 months, so lets drop the niceties and just go and stick your phone where the sun don't shine LOL :) X "
LMAO at the thought of it.
LMAO at the thought of it.
Thursday, 18 October 2012
We're home for a while
We got home yesterday evening after many doctors debated the best course of treatment for Brett - IV antibiotics or oral.
Eventually the microbiologists had the last word. Tablets in hand, we made a sharp exit before they could change their minds.
We got home, had an indian takeaway and watched lots of rubbish that had been saved on the telly box thing. (I'm never really aware of its existence until someone has a hissy fit because the memory left is at critical - whatever!)Brett woke up at 5am and marched into my room to announce he was awake.
If you think cancer mums are angelic think again
My gentle response to him was to yell loudly 'what the flam dunkit do you want me to do about it, and when did you lose the ability to knock?'
Brett decided to make a retreat to the comfort of the living room and watch more junk on tv.
Poppy was awoken at 6:30am and at 7 am was vomiting in the bathroom.
She quickly flopped back into bed leaving me to make the, all to regular call, to her schools attendance line.
Note to self - No takeaway food on a school night at 8:30 pm and expect Poppy to still go to bed at 9pm.
So by 7am I was sitting on the sofa in my fluffy dressing gown desperately clutching a cup of coffee, talking (well listening really) to a teen who had already been up 2 hours, whilst silently wishing I had opted for the 'lie in' today.
Bloody psychic husband.
I have spent most of the day on the sofa. I managed to get dressed, to make toast and to make numerous cups of coffee. Each cup held the hope of giving me some much needed energy.
Alas the energy didn't come.
I seem to collapse when Brett comes out of hospital. Brett walks in the door and the adrenaline I've been living off for so long, walks straight out.
I have some much to do and so little time to do it before transplant starts on the 1/11.
Never mind, must go, they're putting on more Big bang theory - today is definitely a day off.
Eventually the microbiologists had the last word. Tablets in hand, we made a sharp exit before they could change their minds.
We got home, had an indian takeaway and watched lots of rubbish that had been saved on the telly box thing. (I'm never really aware of its existence until someone has a hissy fit because the memory left is at critical - whatever!)Brett woke up at 5am and marched into my room to announce he was awake.
If you think cancer mums are angelic think again
My gentle response to him was to yell loudly 'what the flam dunkit do you want me to do about it, and when did you lose the ability to knock?'
Brett decided to make a retreat to the comfort of the living room and watch more junk on tv.
Poppy was awoken at 6:30am and at 7 am was vomiting in the bathroom.
She quickly flopped back into bed leaving me to make the, all to regular call, to her schools attendance line.
Note to self - No takeaway food on a school night at 8:30 pm and expect Poppy to still go to bed at 9pm.
So by 7am I was sitting on the sofa in my fluffy dressing gown desperately clutching a cup of coffee, talking (well listening really) to a teen who had already been up 2 hours, whilst silently wishing I had opted for the 'lie in' today.
Bloody psychic husband.
I have spent most of the day on the sofa. I managed to get dressed, to make toast and to make numerous cups of coffee. Each cup held the hope of giving me some much needed energy.
Alas the energy didn't come.
I seem to collapse when Brett comes out of hospital. Brett walks in the door and the adrenaline I've been living off for so long, walks straight out.
I have some much to do and so little time to do it before transplant starts on the 1/11.
Never mind, must go, they're putting on more Big bang theory - today is definitely a day off.
Monday, 15 October 2012
Will we get home before transplant?
Well the title kind of sums up the subject of the blog
Brett has been greedy. He has two forms of e coli. One would have been enough surely?
Both are deadly in their own right and both are created from his inside own body again.
The micro biologists have advised the doctors that he'll need two weeks of Iv antibiotics. That would have us in hospital right up to when Brett's bone marrow transplant conditioning starts.
Not good.
Luckily we have a brilliant Dr who acknowledges that Brett's mind has to be as strong as his body, so he is working hard to find a way to get us home for a few days.
Brett seriously needs to get some rubbish take away food in his belly before transplant, as he won't be allowed any take away food for at least 6 months after transplant.
Least of my worries but important to him.
Teenagers. Tut.
Brett has been greedy. He has two forms of e coli. One would have been enough surely?
Both are deadly in their own right and both are created from his inside own body again.
The micro biologists have advised the doctors that he'll need two weeks of Iv antibiotics. That would have us in hospital right up to when Brett's bone marrow transplant conditioning starts.
Not good.
Luckily we have a brilliant Dr who acknowledges that Brett's mind has to be as strong as his body, so he is working hard to find a way to get us home for a few days.
Brett seriously needs to get some rubbish take away food in his belly before transplant, as he won't be allowed any take away food for at least 6 months after transplant.
Least of my worries but important to him.
Teenagers. Tut.
Wednesday, 10 October 2012
The best laid plans of mice and men
I have had three hours sleep in the past 48 hours.
Brett had to be taken back to hospital at 12 last night.
He had gone to bed feeling very happy to be home and relatively well.
He later woke up feeling cold (always a bad sign) and when I took his temperature, it was the magic 38.
He was admitted at 3.45 am to a strange ward as our usual cancer ward was full. We spent the rest of the night sleeplessly sandwiched between a extremely vocal toddler and poorly new born babies. Oh yay!
This morning it dawned on me that I was sitting in this strange ward whilst Kev conducted our house inspection.
The bone marrow transplant is looming fast and one of the many checks the transplant team do is to check your house is up to a good standard that is able to happily support Brett's little frail immune system when he finally gets released from hospital.
The house must have no dust, damp or mould. I was confident I had no damp but I couldn't swear on oath about dust and mould.
I had cleaned like a banshee yesterday and only had a few finishing touches to do early this morning.
I had meticulously planned how best to 'stage' the inspection rather like you do when your selling your or having it valued.
All my confidence disappeared when I realised Kev wouldn't do my final touches, he's only a man, they don't see dirt and mess let alone deal with it.....was my house good enough without the early morning blitz I had planned?
I am glad to say the house passed and with that, so did Kev, divorce averted.
or so I thought.
I arrived home this afternoon expecting to find a prime condition show home. I walked around each room saying things to myself like "holy shit, you bastard!"
It was so not to my standard I wondered if he even knew me.
He had failed to tidy Poppy's clutter away, the kitchen worktops hadn't been freshly polished and worst of all....I am so ashamed to say this, the mould ridden shower curtain that I was swapping early this morning to a lovely fresh white one...not only hadn't been done BUT he had left the mouldy one fully extended for the inspectors to see in all its grimy splendour.
I forgive him. He's a man and he did well. We are so tired and stressed at the minute we need to give each other a break whenever possible. Perfection has always been my thing not his and we did pass the inspection so no harm done.
Which led me to this realisation - Crikey if my house passed all I can think is how bad do they have to be to fail?
Brett had to be taken back to hospital at 12 last night.
He had gone to bed feeling very happy to be home and relatively well.
He later woke up feeling cold (always a bad sign) and when I took his temperature, it was the magic 38.
He was admitted at 3.45 am to a strange ward as our usual cancer ward was full. We spent the rest of the night sleeplessly sandwiched between a extremely vocal toddler and poorly new born babies. Oh yay!
This morning it dawned on me that I was sitting in this strange ward whilst Kev conducted our house inspection.
The bone marrow transplant is looming fast and one of the many checks the transplant team do is to check your house is up to a good standard that is able to happily support Brett's little frail immune system when he finally gets released from hospital.
The house must have no dust, damp or mould. I was confident I had no damp but I couldn't swear on oath about dust and mould.
I had cleaned like a banshee yesterday and only had a few finishing touches to do early this morning.
I had meticulously planned how best to 'stage' the inspection rather like you do when your selling your or having it valued.
All my confidence disappeared when I realised Kev wouldn't do my final touches, he's only a man, they don't see dirt and mess let alone deal with it.....was my house good enough without the early morning blitz I had planned?
I am glad to say the house passed and with that, so did Kev, divorce averted.
or so I thought.
I arrived home this afternoon expecting to find a prime condition show home. I walked around each room saying things to myself like "holy shit, you bastard!"
It was so not to my standard I wondered if he even knew me.
He had failed to tidy Poppy's clutter away, the kitchen worktops hadn't been freshly polished and worst of all....I am so ashamed to say this, the mould ridden shower curtain that I was swapping early this morning to a lovely fresh white one...not only hadn't been done BUT he had left the mouldy one fully extended for the inspectors to see in all its grimy splendour.
I forgive him. He's a man and he did well. We are so tired and stressed at the minute we need to give each other a break whenever possible. Perfection has always been my thing not his and we did pass the inspection so no harm done.
Which led me to this realisation - Crikey if my house passed all I can think is how bad do they have to be to fail?
Monday, 8 October 2012
The newbie next door
A newbie has arrived and I am busy trying hard NOT to listen to the stream of health professionals that are explaining what will happen to him.
Impossible not to hear - its a curtain dividing us not a wall.
They make it sound so nice.
Mum is asking millions of silly questions, just as I did.
Dad has just arrived and is consumed by the local parking situation (anything to avoid the real conversation).
The professionals are very clinical, very X Y Z
But I really know what's coming for them.
I want to cry for them I am sitting hugging my cold cup of coffee thanking god we have our curtains shut.
I am not in the frame of mind to smile and confirm to 'mum' that indeed everything will be ok and this is a great hospital.
I only have enough strength for me today. I will have to make a run for it soon. I need more coffee.
Head down, no eye contact.
Impossible not to hear - its a curtain dividing us not a wall.
They make it sound so nice.
Mum is asking millions of silly questions, just as I did.
Dad has just arrived and is consumed by the local parking situation (anything to avoid the real conversation).
The professionals are very clinical, very X Y Z
But I really know what's coming for them.
I want to cry for them I am sitting hugging my cold cup of coffee thanking god we have our curtains shut.
I am not in the frame of mind to smile and confirm to 'mum' that indeed everything will be ok and this is a great hospital.
I only have enough strength for me today. I will have to make a run for it soon. I need more coffee.
Head down, no eye contact.
Sunday, 7 October 2012
Who will stand beside me
Who will stand beside me through my darkest days
with nothing to receive in lieu of pay
But stand there anyway
Who will stand if front of me with quivering heart and state
I don't know what to say
But speak to me anyway
Who will turn in silent horror hide their face away
'Just tell me when its over and
you've had your judgement day'
Whosoever remains will have a friend till death and further
For those who turn, you do not matter
Who will offer me their calm and stillness
when my world is torrid and screeching loud
to those who stay know this
you're a friend true and proud
by me x
with nothing to receive in lieu of pay
But stand there anyway
Who will stand if front of me with quivering heart and state
I don't know what to say
But speak to me anyway
Who will turn in silent horror hide their face away
'Just tell me when its over and
you've had your judgement day'
Whosoever remains will have a friend till death and further
For those who turn, you do not matter
Who will offer me their calm and stillness
when my world is torrid and screeching loud
to those who stay know this
you're a friend true and proud
by me x
Still in Hospital
Brett is still in hospital, he has had a rough ride again.
The past week has been a bit of a blur.
Brett has e-coli and something completely unpronounceable that ends in cockle.
I'm not dumb just tired. why bother to learn the name of some vile bacteria. - Doctors just kill it now!
the bacteria is from his own body - good that saves me calling in the health inspectors to my house.
On intensive chemo the linings from different areas of your body are stripped away which enables your own bodies 'bugs' to be released into your blood stream. I don't know much more than that because I get sidelined by the phrases 'potentially life threatening and 'extremely serious' and my favourite 'intensive care again'
Thankfully the bugs are responding to the iv antibiotics - die little critters, die.
Still its been a very testing time, who would think that the nurse taking a set of obs (temperature, blood pressure, oxygen levels) could make your heart beat out of your chest with fear.
This also has been the week of the start of bone marrow procedures.
You hear nothing but bad news for ages then -Bam
We have meetings and appointments booked incessantly for the next three weeks.
All the baseline assessments are extremely important (apparently) as they help the medical profession ascertain how the bone marrow transplant has effected his general health in the years to come.
What ? did I hear that right -
Yes.
Our wonderful bone marrow transplant can come at a high cost in the future.
You know what, if we worried about the future and listened to all the never ended stream of negative overtones we would have had a mass family suicide 4 years ago.
Truth is, lets get Brett to that stage and we'll worry then.
If and when he has any long term health problems due to transplant we'll have to cross that bridge then.
The only energy we have right now is just to get to bone marrow, have a successful transplant and get home again.
The past week has been a bit of a blur.
Brett has e-coli and something completely unpronounceable that ends in cockle.
I'm not dumb just tired. why bother to learn the name of some vile bacteria. - Doctors just kill it now!
the bacteria is from his own body - good that saves me calling in the health inspectors to my house.
On intensive chemo the linings from different areas of your body are stripped away which enables your own bodies 'bugs' to be released into your blood stream. I don't know much more than that because I get sidelined by the phrases 'potentially life threatening and 'extremely serious' and my favourite 'intensive care again'
Thankfully the bugs are responding to the iv antibiotics - die little critters, die.
Still its been a very testing time, who would think that the nurse taking a set of obs (temperature, blood pressure, oxygen levels) could make your heart beat out of your chest with fear.
This also has been the week of the start of bone marrow procedures.
You hear nothing but bad news for ages then -Bam
We have meetings and appointments booked incessantly for the next three weeks.
All the baseline assessments are extremely important (apparently) as they help the medical profession ascertain how the bone marrow transplant has effected his general health in the years to come.
What ? did I hear that right -
Yes.
Our wonderful bone marrow transplant can come at a high cost in the future.
You know what, if we worried about the future and listened to all the never ended stream of negative overtones we would have had a mass family suicide 4 years ago.
Truth is, lets get Brett to that stage and we'll worry then.
If and when he has any long term health problems due to transplant we'll have to cross that bridge then.
The only energy we have right now is just to get to bone marrow, have a successful transplant and get home again.
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