Last weeks clinic was so hard.
Not hard for any reason other than the fact that I woke up in the mood from hell and I didn't want to go.
I didn't want to drive the the hospital in the early morning rush hour traffic, I didn't want to make polite conversation with a bunch of people that couldn't give a shit about me and I didn't want to play nice with stupid baby doctors.(Consultants only attend clinic occasionally)
I just didn't want to go !!!!!
Now, I am sure that everyone reading this and in the world in general, has had a 'play hooky day' -
A day when you ring in work or school saying you're 'sick' when you're not actually sick but just want a day off ?!
or just a day skipping generally whatever you were supposed to do in life! -
Just take it easy Bro.....
Well in the cancer world - you can't
Why?
Because avoiding hospital checks is a life threatening decision and it's not my life I'm playing with.
So Tough luck !!!
We were on the road by 8 am and arrived at hospital about an hour and half later after a very fraught and stressful journey. (The journey takes 25 minutes in civilised times).
Whilst in clinic - I nearly battered a new doctor - with words not deeds.
I kept my lips firmly buttoned.
But, as my mum has always said, I show what I'm feeling on my face and even by being a silent movie, everyone around was well aware I wasn't happy.
The little lady doctor was busy trying to assert her authority and amazing knowledge but instead ended up looking like a half-wit with PMT and an over inflated ego.
'Sweetie, the village has called and it's missing it's idiot - go home' -
But I swear I only thought it - I didn't say it ..... I just wanted too.
I knew more about feckin Leukaemia then she did ..............Anyhoo,
I don't think people can ever get what we go through unless they go through it themselves.
But here's an analogy for you:
Having a child with cancer is like being imprisoned for a crime you didn't commit.
But at the same time, your biggest fear is parole.
You don't want parole - there are plenty of other families who have had an early release and that's a very bad thing...simply because they don't all get released together.
Cancer families serve their imprisonment in the hope that on release day everyone who has been sentenced, walks in to the sunshine together.
It doesn't mean that occasionally it doesn't make you mad though, sometimes whilst serving that sentence, you have days when....
Its just not fair.
Monday, 25 March 2013
Tuesday, 12 March 2013
Post Transplant Day 100 and Still Waiting
Brett's first T-cell test has came and went in a flame of fizzling disappointment.
His cells were 0.00, when 0.3 is the figure that will give us all our life back.
Hey Ho.
Day 100 was last Saturday.
I'm not trying to sound depressing but it is a very slow climb back to recovery and life, and its littered with constant, tiny setbacks.
Sarah at the minute just said 'OK' and carried on drinking her coffee.
I am so tired.
Tired of battling
I am happy spending time at home with my family just watching the boring telly.....together
Hey Ho.
Day 100 was last Saturday.
We didn't celebrate.
I'm not trying to sound depressing but it is a very slow climb back to recovery and life, and its littered with constant, tiny setbacks.
Brett is still Platelet dependant - which just means he has to have a Platelet transfusion every week in clinic.
The transplant specialist came into clinic to see Brett last week and said that they are really hoping that his blood count starts to rise by itself in the next few weeks and they will be monitoring him closely in the meantime.
Now, Sarah - Mummy, Warrior of old would have asked a plethora of questions - What does that mean?
The transplant specialist came into clinic to see Brett last week and said that they are really hoping that his blood count starts to rise by itself in the next few weeks and they will be monitoring him closely in the meantime.
Now, Sarah - Mummy, Warrior of old would have asked a plethora of questions - What does that mean?
What are your fears?
What happens if the blood counts don't come up?
What's the next step?
Sarah at the minute just said 'OK' and carried on drinking her coffee.
I am so tired.
Tired of battling
Tired of cleaning the house and everything that enters it.
Tired of the stupid 'clean diet' restrictions
Tired of setbacks
Tired of - What NOW?
Tired of - "For the love of do-nuts, Give me a feckin break!"
I am, on the other hand, very happy.
I am, on the other hand, very happy.
I am happy spending time at home with my family just watching the boring telly.....together
eating tea....together
talking about the future....together
arguing......together
The novelty of simplistic day to day life has definitely NOT worn off.
Life is great...its just hospital visits and test results and stupid doctors that is crap.
X
Sunday, 10 February 2013
Still Pottering Along
Last weeks clinic was interesting.
The doctors want Brett to try and stay off steroids because there's an order to which the drugs can be removed and reduced and they cant start reducing the other drugs until the steroids are finished which would mean the GVHD has gone.
it stands to common sense really - the next drug to be slowly reduced would be the transplant anti-rejection drug, and the doctors aren't going to reduce that until their happy the GVHD is under control.
Just to recap, GVHD is when Brett's old cells and the donor cells fight, we need the donor cells to have won before the doctors reduce the anti rejection drugs.
We think the donor cells have not only won, but are marching at speed through Brett's body.
He has new hair growth which is much darker than his previous hair colour, he has his old finger nails being pushed out by his new finger nails. That is driving Brett mad actually.
Its similar to when you knock a nail badly and it wants to fall off and often does.
We don't want his old nails to fall off yet because they're not far enough up his fingers and it would be an infection risk and we certainly don't need infection risks at this stage.
Brett is also shedding his skin in great volume.
Again, it is freaky to look at his skin and see shiny new skin under his flaking body - Its like a sci-fi movie that gives you the creeps.
Brett's feeling slightly better in himself, which is great.
We are living the quiet life, we've had some visitors but a lot have cancelled. I don't complain at all because I think that's very caring of them.
If someone wakes up feeling a little under the weather, its far better they cancel a visit to us then risk Brett catching anything.
His immune system remains gone - he is having his first T-cell test this week, the day before Valentines Day - Ahhh!
I hope for his sake he has some T-cells but they have to be over 3 before normal life can resume.
Another teenager who attends the same closed clinic as Brett, had his transplant in September and his T-cell level is still only 0.09.
It does and doesn't matter, if you know what I mean.
Yes, T-cells and a full and active life back for Brett and all of us would be great and is going to happen soon, but for now, its great spending time with each other, no sickness no hospital stays, just watching the telly and having a giggle together as a family.
Its all good in the hood. X
The doctors want Brett to try and stay off steroids because there's an order to which the drugs can be removed and reduced and they cant start reducing the other drugs until the steroids are finished which would mean the GVHD has gone.
it stands to common sense really - the next drug to be slowly reduced would be the transplant anti-rejection drug, and the doctors aren't going to reduce that until their happy the GVHD is under control.
Just to recap, GVHD is when Brett's old cells and the donor cells fight, we need the donor cells to have won before the doctors reduce the anti rejection drugs.
We think the donor cells have not only won, but are marching at speed through Brett's body.
He has new hair growth which is much darker than his previous hair colour, he has his old finger nails being pushed out by his new finger nails. That is driving Brett mad actually.
Its similar to when you knock a nail badly and it wants to fall off and often does.
We don't want his old nails to fall off yet because they're not far enough up his fingers and it would be an infection risk and we certainly don't need infection risks at this stage.
Brett is also shedding his skin in great volume.
Again, it is freaky to look at his skin and see shiny new skin under his flaking body - Its like a sci-fi movie that gives you the creeps.
Brett's feeling slightly better in himself, which is great.
We are living the quiet life, we've had some visitors but a lot have cancelled. I don't complain at all because I think that's very caring of them.
If someone wakes up feeling a little under the weather, its far better they cancel a visit to us then risk Brett catching anything.
His immune system remains gone - he is having his first T-cell test this week, the day before Valentines Day - Ahhh!
I hope for his sake he has some T-cells but they have to be over 3 before normal life can resume.
Another teenager who attends the same closed clinic as Brett, had his transplant in September and his T-cell level is still only 0.09.
It does and doesn't matter, if you know what I mean.
Yes, T-cells and a full and active life back for Brett and all of us would be great and is going to happen soon, but for now, its great spending time with each other, no sickness no hospital stays, just watching the telly and having a giggle together as a family.
Its all good in the hood. X
Monday, 4 February 2013
GVHD Rules
Brett has been unwell since his Bone Marrow Test last Thursday.
We did end up driving home in the manic Birmingham rush hour traffic.
And I DID end up drinking half a bottle of wine later that evening!
Oh the stress.
I hate driving in busy traffic with all the lane jumping crazy half wits.
Brett has been sore after his procedure - Obviously!
Bones don't like being rammed with needles and do grumble a bit.
But its more an unwell feeling then just the pain and he's sleeping ALOT.
The sleeping could be a delayed side effect from the Radiotherapy he had during his transplant conditioning.
We were warned of this great long sleep the teenagers have.
It normally occurs around the 6 week mark, but Brett was fine then.
His steroids have been slowly reduced, in the hope that his Graft verses Host Disease has gone.
But it seems as though the GVHD is rearing its ugly head again.
He has stomach ache and has lost his appetite which is major bad news.
The new cells need lots of calories to convert to energy just to be able to function.
Tomorrow is another clinic day and we shall see what the great and mighty oracles say this time. Or Doctors as they prefer to be called.
But hopefully it will be along the lines of:
"Bone marrow test results are great and here's a magic pill to alleviate the GVHD"
Well you've got to be optimistic haven't you.
We did end up driving home in the manic Birmingham rush hour traffic.
And I DID end up drinking half a bottle of wine later that evening!
Oh the stress.
I hate driving in busy traffic with all the lane jumping crazy half wits.
Brett has been sore after his procedure - Obviously!
Bones don't like being rammed with needles and do grumble a bit.
But its more an unwell feeling then just the pain and he's sleeping ALOT.
The sleeping could be a delayed side effect from the Radiotherapy he had during his transplant conditioning.
We were warned of this great long sleep the teenagers have.
It normally occurs around the 6 week mark, but Brett was fine then.
His steroids have been slowly reduced, in the hope that his Graft verses Host Disease has gone.
But it seems as though the GVHD is rearing its ugly head again.
He has stomach ache and has lost his appetite which is major bad news.
The new cells need lots of calories to convert to energy just to be able to function.
Tomorrow is another clinic day and we shall see what the great and mighty oracles say this time. Or Doctors as they prefer to be called.
But hopefully it will be along the lines of:
"Bone marrow test results are great and here's a magic pill to alleviate the GVHD"
Well you've got to be optimistic haven't you.
Thursday, 31 January 2013
First Bone Marrow Test
Sitting in Transplant clinic at the minute. It's going to be a long day.
We were up at 6am so Brett could have some breakfast.
He had until 7 am to eat and drink and then he's starved for theatre this afternoon.
The little clinic is very cosy.
Just patients who are post transplant and one parent/carer per child.
It's nice because you know everyone here and it's great watching the other kids getting stronger just as Brett is.
So this afternoon Brett has his first bone marrow test to see how everything is going.
I should be nervous but I'm not.
I gave up worrying over tests some time ago. Worrying is a waste of time.
It is what it is - is my philosophy.
If you worry for results and all is fine you've worried for nothing. What a waste of energy. And if the results aren't too good, well, worry then.
I just hope Brett's not too far down the theatre list. It takes him ages to wake up after a general anaesthetic.
I don't want to be driving home at rush hour.
We were up at 6am so Brett could have some breakfast.
He had until 7 am to eat and drink and then he's starved for theatre this afternoon.
The little clinic is very cosy.
Just patients who are post transplant and one parent/carer per child.
It's nice because you know everyone here and it's great watching the other kids getting stronger just as Brett is.
So this afternoon Brett has his first bone marrow test to see how everything is going.
I should be nervous but I'm not.
I gave up worrying over tests some time ago. Worrying is a waste of time.
It is what it is - is my philosophy.
If you worry for results and all is fine you've worried for nothing. What a waste of energy. And if the results aren't too good, well, worry then.
I just hope Brett's not too far down the theatre list. It takes him ages to wake up after a general anaesthetic.
I don't want to be driving home at rush hour.
Saturday, 26 January 2013
Transplant and the Freaky Nails
The hospital did not warn us about this!
Brett had been complaining to me about his nails for about a week or so.
I, being the diligent calm and caring mother I am, vaguely replied 'Just leave them alone or put on some hand cream'
Brett finally shoved his hands into my face last Wednesday and I have to admit I nearly jumped out of my skin.
His nails look as though they are falling off.
He has yellow nails, a heavy ridge and then pink nails below.
They are revolting!
Sorry sweetie, but they are!
Brett questioned the consultant about his nails when he attended clinic last Thursday. The consultant nonchalantly shrugged his shoulders and said
"Yes that is a normal part of the transplant process.
When you went through your chemotherapy and radiotherapy conditioning a week before the stem cell transplant, your body effectively died.
The yellow nails are your old dead body and the new nails are the donor cells that took your own cells place.
As a consultant I can tell how far along on your transplant you are, just by looking at your nails."
OMG - Gross and as usual,
Thanks hospital for the heads up... Not !
Brett had been complaining to me about his nails for about a week or so.
I, being the diligent calm and caring mother I am, vaguely replied 'Just leave them alone or put on some hand cream'
Brett finally shoved his hands into my face last Wednesday and I have to admit I nearly jumped out of my skin.
His nails look as though they are falling off.
He has yellow nails, a heavy ridge and then pink nails below.
They are revolting!
Sorry sweetie, but they are!
Brett questioned the consultant about his nails when he attended clinic last Thursday. The consultant nonchalantly shrugged his shoulders and said
"Yes that is a normal part of the transplant process.
When you went through your chemotherapy and radiotherapy conditioning a week before the stem cell transplant, your body effectively died.
The yellow nails are your old dead body and the new nails are the donor cells that took your own cells place.
As a consultant I can tell how far along on your transplant you are, just by looking at your nails."
OMG - Gross and as usual,
Thanks hospital for the heads up... Not !
Thursday, 24 January 2013
Busy Bees
It has been a happily busy time, which is brilliant to be able to say.
I get so tired of repeatedly recounting my tales of woe but now its great to be able to say 'its all good'.
Brett celebrated his 18th Birthday last Friday - what an amazing achievement.
I had only ever dreamt of Brett reaching that age.
He received many many cards from around the world. All wishing him happy birthday and saying how well he had done to make it and how brave he was.
We had planned a little house party with a few of Brett's chosen close friends and family. There were to be about 15 in total. The invitation went with the usual strict stipulation - You can only attend if you're well.
I knew we wouldn't have the final head count until the day itself.
It is very usual to wake up with a sore throat or a bad stomach but what is so unusual is the requirement to then have to cancel your attendance at someones party.
Most of us at some time have gone out feeling a little under the weather, as we wouldn't want to let the person down by cancelling, but to Brett the risk of infection is massive, so the kindest, nicest thing a person can do, is to cancel immediately.
If in doubt - stay away.
In the end Brett had just 8 people attend his little party.
It was a lovely evening.
I had prepared a small buffet but I just couldn't keep it totally in-line with Brett's strict 'clean diet' so on his 18th birthday there was part of his party buffet he couldn't eat - Bad mother or what ?!?!
He couldn't even have a birthday cake.
Well he could, he just wouldn't be allowed to eat it.
So instead I designed a cake made totally out of individually wrapped cake bars and biscuits, which he is allowed.
I have promised Brett and 18th 1/2 birthday when his T-cells are up i.e when his immune system is fully working.
The whole birthday weekend was lovely. Brett read his cards and inspected his presents, Poppy counted the money that people had generously given him and we all watched TV... together....an absolute dream come true.
Happy Birthday Superman. X
I get so tired of repeatedly recounting my tales of woe but now its great to be able to say 'its all good'.
Brett celebrated his 18th Birthday last Friday - what an amazing achievement.
I had only ever dreamt of Brett reaching that age.
He received many many cards from around the world. All wishing him happy birthday and saying how well he had done to make it and how brave he was.
We had planned a little house party with a few of Brett's chosen close friends and family. There were to be about 15 in total. The invitation went with the usual strict stipulation - You can only attend if you're well.
I knew we wouldn't have the final head count until the day itself.
It is very usual to wake up with a sore throat or a bad stomach but what is so unusual is the requirement to then have to cancel your attendance at someones party.
Most of us at some time have gone out feeling a little under the weather, as we wouldn't want to let the person down by cancelling, but to Brett the risk of infection is massive, so the kindest, nicest thing a person can do, is to cancel immediately.
If in doubt - stay away.
In the end Brett had just 8 people attend his little party.
It was a lovely evening.
I had prepared a small buffet but I just couldn't keep it totally in-line with Brett's strict 'clean diet' so on his 18th birthday there was part of his party buffet he couldn't eat - Bad mother or what ?!?!
He couldn't even have a birthday cake.
Well he could, he just wouldn't be allowed to eat it.
So instead I designed a cake made totally out of individually wrapped cake bars and biscuits, which he is allowed.
I have promised Brett and 18th 1/2 birthday when his T-cells are up i.e when his immune system is fully working.
The whole birthday weekend was lovely. Brett read his cards and inspected his presents, Poppy counted the money that people had generously given him and we all watched TV... together....an absolute dream come true.
Happy Birthday Superman. X
Subscribe to:
Posts (Atom)