Not really sure how to start. Perhaps I should start at the beginning. Isn't that where you're supposed to start? What's the saying? Begin at the beginning and end at the ending?
Well, I don't know where this will end, but here's where it begins.
In August 2016, my grandmother slipped down the stairs. I bugged her into going to a doctor so we could know if they were broken or not. That's how we work. As a team.
They did the x-ray, and found a mass on the opposite side to the not-broken-just-bruised ribs. Another x-ray, more antibiotics, and another x-ray, and another CT, and a PET scan, and a biopsy.
In November 2016, my grandmother was diagnosed with Stage 4 Lung Cancer. I say that with capital letters because from that moment on, it was the headline in our lives. The first consultant oncologist told us she had 6 months, even with chemo.
We left that appointment feeling like the world was crashing down, like a wrecking ball had been swung through my chest.
The next day, a woman called Pat called the house. She was Nan's Macmillan nurse and she was very excited. She needed Nan to go for one more test (because the dozens she'd had weren't enough) and meet with a specialist consultant. So she did and we did, and that was the day we met the incredible Dr Leonard.
Dr Leonard was so bouncy and happy and excited to meet Nan, and I began to hope.
Nan had advanced non small cell ALK positive lung cancer. In ten years of studying it, and eight years of specifically screening for it, she'd never actually seen a case of it, it was so rare.
Here's the thing of Fred, as we have affectionately called the cancer.
Fred will sit there and do nothing, and while he's doing nothing, we do nothing. But when he does, treatment comes. Until there was a change in Fred, treatment couldn't be applied.
So we lived for over a year without a change. Nan saw Dr Leonard once every three months and had an x-ray, and every visit was a reprieve. No change.
And then the day came, in February 2018. Fred had changed. I knew it was coming. She'd been tired and weakened and just not herself. That was also the coldest month London had seen for years, hit by the Beast from the East. I wanted to put it down to the weather. I wanted to put it down to the long winter and the short days and the heating that wasn't working the way it should.
But when we saw Dr Leonard, I knew.
Two weeks passed and the day came when Nan started the treatment.
It's a pill called Crizotinib. Technically it comes under chemotherapy. It's one little pill, twice a day, for as long as it works.
It's now seeing the doctors and having a blood test every month. It's now watching and waiting for side effects, which are terrifying on paper and devastating in person. It's knowing the hospital blindfold and the nurses by sight.
The chemo ward wasn't as scary as I thought. It wasn't like in the movies. It was just a room, radio playing, people chatting. They just happened to be hooked up to the machines. The nurse outlined everything, and scared the shit out of me. Everything came with a warning of calling an ambulance, everything now carried dangers. Paperwork weighed me down, and I cannot touch these pills in my handbag, and I cannot breathe.
Watching Nan take the first one was hell. I can't be there when she takes them, it's too hard.
It's been two weeks. She's had two weeks of the pills and gone for the first check, to make sure she's tolerating the medication, that it's working. Things are better. She goes whole hours now where she's awake. She manages to get dressed every day, as opposed to the first four where she could barely lift her head.
It's been two weeks, and I can sort of breathe.
Here's what no-one told me before.
Well, I don't know where this will end, but here's where it begins.
In August 2016, my grandmother slipped down the stairs. I bugged her into going to a doctor so we could know if they were broken or not. That's how we work. As a team.
They did the x-ray, and found a mass on the opposite side to the not-broken-just-bruised ribs. Another x-ray, more antibiotics, and another x-ray, and another CT, and a PET scan, and a biopsy.
In November 2016, my grandmother was diagnosed with Stage 4 Lung Cancer. I say that with capital letters because from that moment on, it was the headline in our lives. The first consultant oncologist told us she had 6 months, even with chemo.
We left that appointment feeling like the world was crashing down, like a wrecking ball had been swung through my chest.
The next day, a woman called Pat called the house. She was Nan's Macmillan nurse and she was very excited. She needed Nan to go for one more test (because the dozens she'd had weren't enough) and meet with a specialist consultant. So she did and we did, and that was the day we met the incredible Dr Leonard.
Dr Leonard was so bouncy and happy and excited to meet Nan, and I began to hope.
Nan had advanced non small cell ALK positive lung cancer. In ten years of studying it, and eight years of specifically screening for it, she'd never actually seen a case of it, it was so rare.
Here's the thing of Fred, as we have affectionately called the cancer.
Fred will sit there and do nothing, and while he's doing nothing, we do nothing. But when he does, treatment comes. Until there was a change in Fred, treatment couldn't be applied.
So we lived for over a year without a change. Nan saw Dr Leonard once every three months and had an x-ray, and every visit was a reprieve. No change.
And then the day came, in February 2018. Fred had changed. I knew it was coming. She'd been tired and weakened and just not herself. That was also the coldest month London had seen for years, hit by the Beast from the East. I wanted to put it down to the weather. I wanted to put it down to the long winter and the short days and the heating that wasn't working the way it should.
But when we saw Dr Leonard, I knew.
Two weeks passed and the day came when Nan started the treatment.
It's a pill called Crizotinib. Technically it comes under chemotherapy. It's one little pill, twice a day, for as long as it works.
It's now seeing the doctors and having a blood test every month. It's now watching and waiting for side effects, which are terrifying on paper and devastating in person. It's knowing the hospital blindfold and the nurses by sight.
The chemo ward wasn't as scary as I thought. It wasn't like in the movies. It was just a room, radio playing, people chatting. They just happened to be hooked up to the machines. The nurse outlined everything, and scared the shit out of me. Everything came with a warning of calling an ambulance, everything now carried dangers. Paperwork weighed me down, and I cannot touch these pills in my handbag, and I cannot breathe.
Watching Nan take the first one was hell. I can't be there when she takes them, it's too hard.
It's been two weeks. She's had two weeks of the pills and gone for the first check, to make sure she's tolerating the medication, that it's working. Things are better. She goes whole hours now where she's awake. She manages to get dressed every day, as opposed to the first four where she could barely lift her head.
It's been two weeks, and I can sort of breathe.
Here's what no-one told me before.
- The sound of Nan puking will not turn my stomach the way I thought it would. I will run towards it instead of away.
- Food becomes a minefield when treatment starts.
- Sleep becomes illusive, and it's amazing what you can get done when exhausted.
- Cancer infiltrates everything you do now. It is in every decision, every choice, every move you make. It is in every single thing you buy at the supermarket, every hobby you practice, every time you have to leave the house.
- The world still keeps turning, even though for you it has stopped. the world will keep going even though you're standing still, stuck in this quicksand called cancer.
I'm not sure why I'm writing this, I don't know if anyone will read it. I guess I just wanted for someone else going through this to know, it's not just you.
Until next time.
XXX
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