My insomnia has returned. I find myself awake in the darkness and my heart is hammering against my ribs. Next to me Mr C sleeps on, his rhythmic breathing helping to calm me down. I’m not alone. I roll over, my eyes adjusting to the darkness. I can now make out the outline of Mr C’s face.
He looks so peaceful. I wonder what he really thinks about our latest news from the oncologist. Mr C is a man of few words: a bit of an enigma. He isn’t one for sharing his feelings and that worries me. All through this process I’ve worried about how he is feeling; how he has no family physically close-by. Who does he have to support him when I’m having a bad day?
I know his family reach out over text or phone but he still doesn’t really share how he is feeling. It makes me wary of telling him how I’m really feeling. How some days the fear is so all consuming that it feels like it’s strangling me. It then occurs to me how we are both probably putting on this act of bravado because not only does it protect the other one, but it also protects us as a unit. Sometimes we really do have to pretend to be brave in order to be brave. I’m sure that was the line in the Pets 2 movie. FYI I cried like a baby during that film; my children were slightly bemused. At the time, Youngest had leant over and said, “Mummy, this is a funny film” I’d made an excuse about there being something in my eyes. It turns out that those dogs are very wise ;-).
I remind myself that we are doing okay, we have each other. I snuggle in close to Mr C and, like I always do, I try to match my breathing to his – It’s going to be okay, it’s going to be okay.
The eye of the storm
We are the ones in the centre of this sh*t storm. It’s us that sits in the appointments and it is us that has to listen to the experts tell us what they think. We end those appointments feeling weary. Then comes the discussion about how much information we share and with whom. The relaying of information can be painful. People want to offer support so they will often rush to reassure us with positives. We appreciate that it comes from a good place but it often makes us feel more alone. Alkaline diets, juices and positive thinking aren’t enough to beat this cancer alone. They might help but they won’t beat it. The chemo, the poison, is the only real chance that I have. We wonder if they haven’t been listening to what we have told them. Emotions are harder to convey over the phone, gentle inference is lost over text. They can’t read our body language, they can’t see how broken we are feeling. They can’t offer us a hug.
Earlier that day
As we are shown into the now familiar office, I find myself trying to analyse my oncologist’s body language and sense something isn’t quite right but chide myself for being pessimistic. Although to be fair, I have always approached these appointments with a healthy sense of pessimism in the hope that I will be pleasantly surprised.
My doctor shuffles his papers and immediately launches into the fact that I need to have more chemotherapy. “Right, okay then” I mutter back. My oncologist explains that we need to continue to throw everything at it. I feel my heart sink. Capox again. 4 three week cycles of combination chemotherapy starting with an infusion. I explain that the veins in my left arm have given up. How I still get vein pain in them now. How the arm swelled up in protest in the hospital because it objected to the cannula. I enquire about a picc line. He asks me to tell the chemo nurses to just use my right arm. I want to cry in fury. That’s my writing hand and the veins are hardly great in that arm. Instead, I just nod at him.
Why do I need more chemo?
The oncologist carries on talking at me and I struggle to focus on what he is saying. Apparently, I need to start sooner rather than later. I snap my head up “Why?” I bluntly ask. He looks at me confused. I carry on, “I mean all 36 of my lymph nodes are clear. There were clear margins. Why do I need more chemo?” The question hangs between us. He looks down at his desk. Then back up at me. Finally, he replies “You have vascular invasion”. I look at him confused and then speak, “Do you mean that the cancer is now in my bloodstream and could be rushing around my body?”
“Yes” he nods.
I want to scream “f*cking great”, instead I sit in stunned silence. The oncologist explains that my cancer was high risk and still is. Now that it’s in my blood there is no way of really knowing if and where it’s going to appear. He talks about not knowing how much the chemo will buy me. I hone in on the words buy me. Does he think this cancer is going to kill me? Is he gently trying to imply that I won’t beat this? I should ask him but I’m too scared. I just pray that it’s a poor choice of words.
A waiting game
The oncologist explains that after the chemo it will be a waiting game. Constantly waiting to see if one of the seedlings has popped up anywhere; waiting to see if a Phyllis baby tumour will grow somewhere else. Waiting, always waiting, whilst inside of me a war is raging on. I feel angry but I interject with “But I surprised you before, I can surprise you again” He just nods and I don’t know what that means. I don’t know what any of this means. But then I realise that they, the experts, don’t know what any of this means either. There is no way of knowing now that it is in my blood. I feel furious at Phyllis, furious at myself, furious at the world. I need to aim for 2 years first. If I can get to 2 years surely then I stand more of a chance. I’m mentally working out when the girls finish school. I’m reminding myself that I need to fight this.
To add insult to injury
I am told that I need to be weighed before I start my next lot of chemo in a couple of weeks. I’m not happy when I’m told that I’ve put weight on. I was told to keep my weight on; it appears that I have excelled. I nearly punch the oncologist when he suggests I don’t put any more weight on. Instead, I remind him that I exercised and ate healthily before all of this. I point out that chemo gave me a sweet tooth, something I never had previously. I also haughtily inform him that I walked 4 1/2 miles the previous day. I’m not happy at all. Phyllis really is taking the bloody piss now.
We talk through everything. It’s explained that at the end of the chemo I will wait 6 months for a scan. That’s to see if a tumour has popped up somewhere else. Then it will be continual monitoring, bloods and scans. It doesn’t feel right. Surely there must be a way of seeing where the b&stard seedlings have headed. Surely we can try and stop them. Then I chide myself for being silly as that’s what we are all hoping the chemo will do: eradicate it all. This isn’t a mop-up or belt and braces, this chemo is not a choice – I need to have this chemo.
How likely am I to survive?
I then ask my oncologist what my survival rates are. He looks stunned. “Are you sure you want to know?” he asks. “Yes,” I reply firmly. “You don’t want to know,” he states. “Yes, I do,” I almost shout, my voice rising. The oncologist looks uncomfortable, he makes a lot of erm and ahh noises before dropping the bombshell. My mouth drops open in shock. He gently says, “I told you that you wouldn’t want to know”. I look at him, “I’m glad I know” but my voice sounds hollow. A part of me wonders if he has been optimistic with his prediction or has he erred on the cautious side. I knew that due to the advanced stage of my tumour it wasn’t going to be amazing, but I’m still surprised. Again I say, “But I surprised you last time”. I realise that I am now mostly reassuring myself. The words sound weak though, I feel weak.
I leave the appointment feeling weird, it’s not the best news but it could have been better. The next day I go back to my oncologist with more questions. I don’t like the answers, again I remind myself that it could be worse. I google incessantly. Again, I don’t like what I read. I slam down the lid of my laptop and I repeat the now familiar mantra: it could be worse.
It’s time for Phyllis to do one
I might not know exactly what I am dealing with but I am going to do my hardest to beat this. I’ve surprised them before, I’m hoping I can surprise them again. I have my surgeon’s appointment coming up and my fingers are crossed for some good news, more optimistic news. That vascular invasion can do one. Phyllis and her cronies can do one because now I’m angry and that isn’t good for anyone.
Just bloody piss off Phyllis.