Got up this morning after a relatively good night. Brett only got up 4 times for the loo.
So I felt really perky!
I had a nice cup of coffee and whilst Brett was still asleep I decided to go outside the hospital and call my dad to wish him happy birthday.
I saw lots of other cancer parents on the way and enjoyed many pleasant chats.
All good yes ? no!!!
I've just been to the bathroom and noticed I'd left my hair up in a very roughly done high ponytail which I do late at night and expect no one to see (except nurses)
And if that wasn't enough I noticed I had a stream of white sleep dribble down my face.
Oh the glamour I project.
Note to self :::
look in the bloody mirror once in a while.
Tuesday 28 August 2012
Sunday 26 August 2012
Peaking Intensive Chemo
Brett was admitted back to hospital last Wednesday.
Today is Sunday and we can see no sign of release for him.
His blood count has crashed due to the intensive chemotherapy.
To anyone who understands;
HB 8.4 (you have a blood transfusion at 8 so he probably will tomorrow,
White cell count 0.01, neutrophils 0 - no immune system exists!
But weirdly enough platelets 150, which is in average range, this is because Brett has been bleeding and the Dr has ordered platelet transfusions twice a day for 3 days.
Brett has mucisitus which means the lining of the mouth and throat has been burnt off by the chemo (we've seen this before) but this time it appears that it has continued throughout his body, all the way through, hence the blood in his urine - well LOTS of blood actually.
I haven't blogged before because I have been very tired even though my husband and I take turns staying each night.
I haven't been able to do much even on my nights off at home. Just ironing cleaning - the bare essentials to enable me to get organised for the next days hospital 'shift'.
Brett has been grouchy - I know ....'No Shit Sherlock' your probably thinking....
I would be evil if I were in his shoes, but I'm not even tired because of that.
I think it is just a very intensive hard road we're on.
And a very frightening one too
and sometimes, just sometimes, being brave all the time becomes a little too much....Its so tiring.
I don't want to be brave
I don't want to put on a permanent smile.
I want to scream "Its not fucking OK....this is not alright....This is Bollocks..."
But I don't, I can't .....So I just go quiet and put all my energy into basic survival mode.
"Smile at the Dr and say Hello Sarah." my mind says to me.
why ? when I would like to punch him? comes the reply
"Because that's not etiquette" what a shame.
xxx
Today is Sunday and we can see no sign of release for him.
His blood count has crashed due to the intensive chemotherapy.
To anyone who understands;
HB 8.4 (you have a blood transfusion at 8 so he probably will tomorrow,
White cell count 0.01, neutrophils 0 - no immune system exists!
But weirdly enough platelets 150, which is in average range, this is because Brett has been bleeding and the Dr has ordered platelet transfusions twice a day for 3 days.
Brett has mucisitus which means the lining of the mouth and throat has been burnt off by the chemo (we've seen this before) but this time it appears that it has continued throughout his body, all the way through, hence the blood in his urine - well LOTS of blood actually.
I haven't blogged before because I have been very tired even though my husband and I take turns staying each night.
I haven't been able to do much even on my nights off at home. Just ironing cleaning - the bare essentials to enable me to get organised for the next days hospital 'shift'.
Brett has been grouchy - I know ....'No Shit Sherlock' your probably thinking....
I would be evil if I were in his shoes, but I'm not even tired because of that.
I think it is just a very intensive hard road we're on.
And a very frightening one too
and sometimes, just sometimes, being brave all the time becomes a little too much....Its so tiring.
I don't want to be brave
I don't want to put on a permanent smile.
I want to scream "Its not fucking OK....this is not alright....This is Bollocks..."
But I don't, I can't .....So I just go quiet and put all my energy into basic survival mode.
"Smile at the Dr and say Hello Sarah." my mind says to me.
why ? when I would like to punch him? comes the reply
"Because that's not etiquette" what a shame.
xxx
Tuesday 21 August 2012
Waiting for platelets
Still on clinic after 4 hours.
Brett needs a platelet transfusion today and probably Friday too.
I didn't think he looked too bad until a little boy asked Brett if he had been in a fight.
What was he talking about?
Of course Brett hasn't been in a fight.
Oh, now come to think of it Brett's hands do look a bit red and bruised.
Gotta laugh.....someone once said.
Brett needs a platelet transfusion today and probably Friday too.
I didn't think he looked too bad until a little boy asked Brett if he had been in a fight.
What was he talking about?
Of course Brett hasn't been in a fight.
Oh, now come to think of it Brett's hands do look a bit red and bruised.
Gotta laugh.....someone once said.
On the way to hospital
Just taken Poppy for an orthodontist appointment (which makes her freak, she's a nervous dentist patient)
Dropped her at mum n dads and now we're in the car off to the hospital.
It's supposedly for a check up but I have packed a case anyway.
Experience has taught me to never expect an ordinary check up.
Brett's chemo effects will be peaking today and tomorrow, he feels like crap and has blood in his urine.
Not sure where I will be sleeping tonight, home or hospital ?
If we do manage to get home, I really want a drink -wine!!!
Who else thinks of alcohol at 10.25 in the morning? I'm not an alcoholic, just stressed beyond measure.
When I worked as a senior manager many moons a go, I used to come home saying I was stressed.
I really laugh at those memories,
Coz I had no idea what true stress was.
I won't be drinking tonight anyway because it's Kev's turn.
We can't share a bottle of wine anymore like normal people, as one of us has to be available to drive Brett to the hospital at any moment night or day.
Such is life! I'm not complaining.
Better to be battling than not.
X
Dropped her at mum n dads and now we're in the car off to the hospital.
It's supposedly for a check up but I have packed a case anyway.
Experience has taught me to never expect an ordinary check up.
Brett's chemo effects will be peaking today and tomorrow, he feels like crap and has blood in his urine.
Not sure where I will be sleeping tonight, home or hospital ?
If we do manage to get home, I really want a drink -wine!!!
Who else thinks of alcohol at 10.25 in the morning? I'm not an alcoholic, just stressed beyond measure.
When I worked as a senior manager many moons a go, I used to come home saying I was stressed.
I really laugh at those memories,
Coz I had no idea what true stress was.
I won't be drinking tonight anyway because it's Kev's turn.
We can't share a bottle of wine anymore like normal people, as one of us has to be available to drive Brett to the hospital at any moment night or day.
Such is life! I'm not complaining.
Better to be battling than not.
X
Monday 20 August 2012
Cancer familys and friends?
Brett did achieve remission (yeah)
and then was hastily hit with more very intense chemo.
I haven't blogged because 'intense' wasn't the word.
My poor bab and what he's been through....I couldn't write most of it.
The suffering is so intense and that's just from the side effects.
It was horrific to watch his mouth, tongue and throat just melt ....
Morphine was the state of play and it didn't touch it... omg!
I am so tired. I didn't sleep much either at hospital nor at home.(who can relax?)
He was very ill and my daughter was totally ignored. (Parents of the year, not!)
She made a comment that she only got the tired grotty parent who had left Brett's side-
Which was totally true - unfortunately - (out of the mouth of babes)We put on a huge brave face for Brett and then come home utterly spent. --- (So True... oh crap....)
So Kev and I decided to make a huge attempt to come home nice and not allow our adrenalin to drop too low as too allow us to ignore her, or worse, be grumpy with her.
She knows its hard on the healthy child .... but that doesn't make it OK in our eyes.
I have two children not one,
although its only one that could .....
Back to Brett:
A bone marrow match has not been completely found because he has a rare element to his tissue type - Oh shit....
Back To Poppy:
Poppy continues to have a horrid summer holiday being farmed off to family (I would add friends but they seem to have completely disappeared into the wood work, as have most of my family too, even my own blood line)
Back to me:
Hey fucking ho - screw em - fuck em - coz I'll never forgive em.
--------------------------------------------------------------------------------
Poppy has been so great with Brett this time round.
The first time Brett had cancer she was normal, ha, ha -
arguing with her annoying big brother and so on.
This time she has been soft and very understanding.
Which totally freaks me out!!!
No, she's really been lovely.
She knows her life will resume as soon as his life does.
She gets it!, which sometimes makes me even more sad.
I am angry, again...very angry.
This time I'm angry at my family and friends, not at the cancer so much.
Yeah sure cancer creates the situation but its the family and friends deserting you that makes it so lonely.
"Let me know what happens"
"I dont know what to say",
"I dont know how you do it" they bleat
- "Well I'll be doing it without your help and support, it would seem!" We think.
The only consolation is that were not alone in being left alone
Talk to any cancer family and your contact list suddenly contains drift-wood.
All the time I wasted on people who cant give nothing back to me...what a shame!
And what a waste of my time in even bothering with them in the first place.
My message to wasters:
"Be There for others, or live a sad and lonely life"
Coz in future all cancer parents will test you to see if your worth their spit and
99% of you wont be.
1 % of you will have a true friend for life.
and then was hastily hit with more very intense chemo.
I haven't blogged because 'intense' wasn't the word.
My poor bab and what he's been through....I couldn't write most of it.
The suffering is so intense and that's just from the side effects.
It was horrific to watch his mouth, tongue and throat just melt ....
Morphine was the state of play and it didn't touch it... omg!
I am so tired. I didn't sleep much either at hospital nor at home.(who can relax?)
He was very ill and my daughter was totally ignored. (Parents of the year, not!)
She made a comment that she only got the tired grotty parent who had left Brett's side-
Which was totally true - unfortunately - (out of the mouth of babes)We put on a huge brave face for Brett and then come home utterly spent. --- (So True... oh crap....)
So Kev and I decided to make a huge attempt to come home nice and not allow our adrenalin to drop too low as too allow us to ignore her, or worse, be grumpy with her.
She knows its hard on the healthy child .... but that doesn't make it OK in our eyes.
I have two children not one,
although its only one that could .....
Back to Brett:
A bone marrow match has not been completely found because he has a rare element to his tissue type - Oh shit....
Back To Poppy:
Poppy continues to have a horrid summer holiday being farmed off to family (I would add friends but they seem to have completely disappeared into the wood work, as have most of my family too, even my own blood line)
Back to me:
Hey fucking ho - screw em - fuck em - coz I'll never forgive em.
--------------------------------------------------------------------------------
Poppy has been so great with Brett this time round.
The first time Brett had cancer she was normal, ha, ha -
arguing with her annoying big brother and so on.
This time she has been soft and very understanding.
Which totally freaks me out!!!
No, she's really been lovely.
She knows her life will resume as soon as his life does.
She gets it!, which sometimes makes me even more sad.
I am angry, again...very angry.
This time I'm angry at my family and friends, not at the cancer so much.
Yeah sure cancer creates the situation but its the family and friends deserting you that makes it so lonely.
"Let me know what happens"
"I dont know what to say",
"I dont know how you do it" they bleat
- "Well I'll be doing it without your help and support, it would seem!" We think.
The only consolation is that were not alone in being left alone
Talk to any cancer family and your contact list suddenly contains drift-wood.
All the time I wasted on people who cant give nothing back to me...what a shame!
And what a waste of my time in even bothering with them in the first place.
My message to wasters:
"Be There for others, or live a sad and lonely life"
Coz in future all cancer parents will test you to see if your worth their spit and
99% of you wont be.
1 % of you will have a true friend for life.
Tuesday 7 August 2012
Back in hospital
Yes!!!!! yeah us!
We are back in lovely hospital for more delicious chemo and with a theatre visit on top, too, whoop whoop.
Yeah ... I'll cut the crap.
That's what fake positive feels like don't it?
Yeah my poor son - intensive chemo with all the associated risks- vomiting, temperatures, infections, feeling complete crap, the joy of being connected to a pump stand for days.
Grrrrrrr
I am not miss perky today, instead I'm battling to keep down, Miss don't piss me off.
I am feeling cancer mum precious !!!
My family are all fed up and seriously trying to hide it from each other.
My son has chemo and theatre today - not just any theatre but the BIG theatre test that tells us how treatment is going. Good bad ugly !?!?!?
My daughter was supposed to be on a theatre summer school this week. She did it last year and loved it. It has been the only thing she has looked forward to the whole of her summer holiday (well the only thing she was able to do , gotto fit round brett, sweetie) and it was cancelled at the last minute.
My husband and I are trying to be the family clowns, 'ha ha ha, he he he nothing really bothers me'
Come on kids let's make the best of it .... Blah blah blah
What's the point? We should give up sit down and introduce our teenagers to the modern world equivalent to faking it
Alcohol sex drugs gambling shopping eating.
Yes please! All of the above.
'Come on kids lets choose your life long crutch'
Only joking. It's the lack of sleep!
I should stop being grumpy after all
It is what it is ....
And it's shit.... Plastic smiles all round now.
We are back in lovely hospital for more delicious chemo and with a theatre visit on top, too, whoop whoop.
Yeah ... I'll cut the crap.
That's what fake positive feels like don't it?
Yeah my poor son - intensive chemo with all the associated risks- vomiting, temperatures, infections, feeling complete crap, the joy of being connected to a pump stand for days.
Grrrrrrr
I am not miss perky today, instead I'm battling to keep down, Miss don't piss me off.
I am feeling cancer mum precious !!!
My family are all fed up and seriously trying to hide it from each other.
My son has chemo and theatre today - not just any theatre but the BIG theatre test that tells us how treatment is going. Good bad ugly !?!?!?
My daughter was supposed to be on a theatre summer school this week. She did it last year and loved it. It has been the only thing she has looked forward to the whole of her summer holiday (well the only thing she was able to do , gotto fit round brett, sweetie) and it was cancelled at the last minute.
My husband and I are trying to be the family clowns, 'ha ha ha, he he he nothing really bothers me'
Come on kids let's make the best of it .... Blah blah blah
What's the point? We should give up sit down and introduce our teenagers to the modern world equivalent to faking it
Alcohol sex drugs gambling shopping eating.
Yes please! All of the above.
'Come on kids lets choose your life long crutch'
Only joking. It's the lack of sleep!
I should stop being grumpy after all
It is what it is ....
And it's shit.... Plastic smiles all round now.
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