I now know what socks feel like in the washing machine.
I am stuck on a fast spin cycle that’s no close to ending any time soon.
When you picture your life and the ups and downs you might face, never in a million years do you ever envisage yourself going through and coping with something like this.
It’s actually incomprehensible.
Just take a minute, imagine being one of the 1 in 3. Then imagine it being the person that you love, that you planned to spend the rest of your life with, the person that saved you.
Imagine watching them and knowing that they are in constant pain but pretending to the world it’s not that bad and there’s fuck all you can do to help.
I’m still waiting for someone to tell me they’ve got it wrong, actually this is all a big mistake, go back to your regular, boring, run of the mills lives. Make plans, go on holiday, live your lives and forget about all of this.
It’s a fleeting daydream I don’t dwell on. No one is going to tell me it’s all going to be ok, they can’t.
Just imagine for a minute, don’t think about it too long because it will physically make your heart hurt.
The past month Mr C has had what feels like 100s of appointments with different doctors, specialists at different hospitals who will treat him this next year. This week will hit an all-time high.
Today he had a kidney test and blood tests, he hates needles, tomorrow the GP, Thursday he is having his central line fitted, Friday lumbar puncture in the morning and heart test in the afternoon. They’re getting prepared for his chemo which starts next Tuesday.
Not knowing what is to come is difficult and worrying and all the other words associated when you begin to think about how tough this year will be. In all honesty I’m trying not to think too far ahead. If I break down what’s to come in bite size manageable chunks I might be able to well, not break down.
Things we do know are getting easier to say out loud, facts are much easier than feelings.
We do know that he has a cancer called Ewings sarcoma. It’s a rare bone cancer. There no more than 75 cases each year in the UK. He doesn’t do things by halves.
Not only is it rare, he’s an unusual case. The tumour is not in the area of bone Ewings is usually found, it’s usually found in adolescents (this does make this particular cancer any easier to treat) gout is not usually presented with it (turns out he has gout caused by the waste cells from the tumour.) It’s so unusual that they did a secondary biopsy to confirm the diagnosis as at one point they thought it could be Lymphoma. It was more likely for him to win the lottery than for him to get this type of cancer.
We know that there are no tumours in his lungs, the first place it would travel and up to now there are no other bone tumours anywhere else.
There is a treatment plan, although due to the rarity of everything, the plan will need to be discussed nationally at the Ewings treatment board thingy.
Mr C will have 14 lots of chemo every 3 weeks. He will go to Christies for 3 days/2 nights each time. Half way through the treatment he will have his leg amputated, more than likely above the knee and then the chemo will start again.
Facts not feelings, facts not feelings, facts not feelings.
We know about foods he can’t eat, what he has to do if he’s feeling feverish or like he’s getting a cold as his body won’t be able to fight infections.
We know his hair will fall out and we have been warned about the other side effects of treatment.
We know we will have to make the most out of well days.
There are dark days ahead. Within those days a certain degree of normality will have to remain for me and the kiddies. I will need to go to work even though every part of my fibre screams to be at home where I can deal with things in our little bubble. The kids will need to go to school and nursery, they will need to be children, they will need to have fun.
That’s what we know.
Everything else is unknown, unexperienced.