Hi everyone, I have come on to the forum a few times to read the helpful and reassuring posts that are here but have not quite felt ok to post. I kind of deal with things on my own and talk about those things afterwards rather than during. But I did jot down a few words here and there throughout our journey which developed into a poem. I keep changing it and should really stop now. so, I thought I would post it here. I hope its ok to post. It makes me feel sad to read it back but i think it will help to move on a little if i share it.
Please excuse any mistakes! And my different fonts and italics haven’t come through. But here you go. I’m not sure what to call it…other than:
From the moment the poison hits: They ask ‘is he ok?’
From the moment the poison hits: I ask ‘are we going to be ok?’
From the moment the poison hits: I wonder, ‘how will we get through today?’
You were so brave to walk back in there
Willingly hand yourself over for another course
A stronger one they said, freshly prepared.
And we had to wait patiently
For a more horrendous time than before.
From the moment the poison cursed through your veins
From that moment you were in so much pain
We could visibly see the path it took…
Your veins rose high, your eyes went dry and your skin burned purple, your breathing became restricted, your organs were saturated.
Every cell was destroyed
Every day was a battle
Every day took its toll
And not just on you.
So many Nurses
So many Doctors
So many people caring
So many people scared for you.
You nearly died
when a blood clot arrived.
Infections from the lines and an allergic reaction to the meds that they gave to help.
Your organs were spiking
Your body was battered
Your soul became weak – it had been so strong and determined
But this treatment was brutal indeed.
They asked me how you were today?
But, they ask when I am with our children
And when I look into their eyes
Although I am screaming inside, that you nearly died.
I have to say out loud
That today, you are ok!
And we are going to be ok!
And when they ask if your hair has fallen out
I think about your eyes
And your hearing
And your body shaking
And the vomiting
And yes, your hair has fallen out
Your nails have stopped growing
And you are being burned from the inside out.
Some side-effects still remain
Is it fatigue or chemo brain?
I walk on eggshells as I navigate around you
Trying to build you up and reconnect you…
Helping you to make sense of what we have been through
But you resist and I carry on…
On my own,
I have never felt so alone.
And then when they see you and they say you look so good today
They look so happy and are so content
Your hair is black and your skin is no longer grey
But I cannot smile, I cannot agree,
It’s such a conflict for me
Your body is still fighting to survive
Your blood is at war
There is so much more…
And it is all going on inside!
And when I try to explain
again and again
They ask, ‘What is GvHD?’
And I get really disappointed
Because I’ve told them before
HOW CAN THEY FORGET???
How can they not know!
So maybe it is best
to just agree and say yes…
Yes, he’s ok today
Yes, his hair has grown back
Yes, yes, yes.
Yes you survived
Yes you are alive!
There is so much more going on inside!
And you are still fighting.
And we are still surviving.