I’ve been sat in bed for at least an hour staring at this blank screen. I’m trying to find the words that adequately explain my feelings and emotions. There is no single word that sums it up neatly. Chemotherapy is messy and I’m only just beginning to grasp how much of a gruelling endurance this is going to be. I’m scared. I’m only on my second cycle and I still have a long way to go.
Finding the words
There is so much I want to say about this second cycle of chemotherapy, but pins and needles keep attacking my fingertips, the swelling nausea threatens to spill and my mind feels like it has been wrapped up in cotton wool. Typing this post has become a battle of wills. I’m determined to get my words out. Since bowel cancer cruelly barged its way into my life everything has changed beyond recognition. I might no longer recognise my life but I won’t let this cancer rob me off my writing. I love it, my writing is for me, but I hope that it also helps others. It’s my way of finding something positive to focus on in the darkness. It keeps me sane when dark thoughts are trying to infiltrate.
The last couple of days of cycle 1 had been normal – a word I never thought I would love so much. Feeling normal means everything to me right now. Being able to step into a shower without the water stinging my body, being able to go for a walk without the cold air strangling me and being able to drink a cold drink straight from the fridge. There was no nausea and the tiredness was manageable. It felt amazing to feel normal again.
I’m not going to say it was all plain sailing. I’ve learnt that chemotherapy can be unpredictable. You might expect that a week off chemo tablets to be straight forward but it isn’t. I’m not just living with cancer physically, I’m also living with it mentally. After a glorious weekend with the family, I was hit with a major dose of reality on the Monday. The in-laws had gone back to the mainland, the children were back at school and Mr C was back at work. Yet, here I was. Still trapped by cancer. Physically, I felt fine, but mentally I was not in a good place. I was anxious for what the week would bring.
I had a busy week ahead: blood tests that would determine whether I was still healthy enough to start my next cycle of chemo, a meeting with my oncologist to confirm whether I was ok to start my next cycle, and then, hopefully, starting my next cycle. But, on that Monday looking ahead, I felt scared and out of control. I decided that it was completely the right time to clean my oven, in fact, the whole house needed a deep clean. I wanted everything sparkling and new. I wanted to claw back some control, but there was some grime stuck on the oven racks and it wouldn’t budge. Without warning I started sobbing, bent over the sink on an ordinary Monday morning, except there is no ordinary Monday when you are dealing with cancer.
Can I Do This?
Never have I asked “Why me?”, never have I complained, “It isn’t fair”. I know that cancer is indiscriminate, I know that it doesn’t care if you are healthy, unhealthy, pretty, ugly, rich, poor, male or female, young or old, cancer picks whoever it damn chooses and you have to just roll with it and learn to live with it. But that Monday as I raged I felt the prickle of doubt. Did I have it in me to roll with it through the highs and lows? At that point I would have said no, but that’s how chemo works. One hour you feel dreadful, the next you have moved on and you are ready to face the world again.
The very next day I did face the world. I had my blood tests and it was all fine, the day after that I had my meeting with my oncologist and again it was all fine. Everything was fine. I was fine. Fine is bloody brilliant right now. I then appeared on ITV Channel News to talk about bowel cancer. In a way it was the perfect way to end cycle 1. I was sticking my two fingers up at Phyllis and talking about bowel cancer awareness. Yes, I was going to be on live television but what was the worst that could happen? I already had bowel cancer ;-).
So, on the evening before I was due to start cycle 2 I found myself being bundled into the studio, sat before the two presenters, unsure of what I was about to be asked. Would I hold it together or would I end up crying on live television? Of course I didn’t cry 😉 I kept my composure and I answered all of the questions. I hope that it was useful and if it makes just one person think and go to the doctors earlier because of what I have done, then I have achieved something.
Making My Family Proud
Mr C said how he was incredibly proud. He was allowed to stand at the back of the studio and I know that it can’t have been easy for him watching his wife open up about her bowel cancer. It’s a position we never expected to find ourselves in. After the interview we headed out to dinner, determined to do something nice before the next barrage of treatment started. It was lovely to have some time together. However, it was also nice to return home to the rest of my family, my mum, dad and both of the girls who excitedly told me that they had watched me on the news and how they had loved it.
The next day was very different. I woke up with the usual panic clawing at my throat. It was time for cycle 2 to commence. I knew that once it got going I would be fine. The anticipation is worse. Once I arrive at the ward, I’m ready. The team are fantastic on the chemo ward and they always make you feel at ease. This time I’m in quite a private bay and if I lean forward I can just about see the sea. My nurse is lovely, although I am slightly worried when she admits that she has broken her glasses. She takes out her glasses frame that has broken in half and puts them over her eyes. “You aren’t going to miss my vein, are you?” I ask in mock horror. “Oh no” she reassures me, “I’ve done this plenty of times”. For some reason I suddenly have a vision of her throwing chemo needles at a dartboard.
The Chemo Chair
My time in the chemo chair is uneventful, tedious even. I’ve brought plenty of snacks, a vegetable sushi for lunch (fancy), magazines and comedy shows on my phone. It’s only when I come to leave that I realise how awful I feel. I stand up and my legs nearly give way beneath me. I panic, I can’t feel my feet properly. I have to sit down again and wait for the sensation to pass. Eventually I muster the strength to leave the ward and make my way downstairs, clinging onto Mr C. He carefully deposits me at the hospital reception so he can go and get the car and pick me up from the door.
Back home and I’m feeling really unwell. I feel as if I’ve been hit by truck and I’m surfing on waves of nausea, my legs keep buckling under me and my feet and hands are clawing. I feel petrified. I’m convinced I won’t sleep as the steroids are pumping through my body. However, by some miracle I do sleep. The following few days pass in a similar haze. Friday morning, I collapse at the top of stairs and find myself stranded as everyone is out. Eventually the sensation returns to my leg. Another time I go to brush my hair but I cry out in pain as my hands start clawing again. My mum has to brush my hair for me and again I’m reminded of the kindness of others and of my own vulnerability.
Sunday and my legs are finally feeling better and the clawing has passed. However, I take my chemo tablets and throw them back up. I nearly howl in frustration. I manage to have a shower and wash my hair. I make it out of the house, and yes I have to cling to my mum because my legs are still wobbly, but I’m proud for making it out.
The rest of the day is a mixture of highs and lows. Oldest returns from Brownie camp and I’m delighted to have her back home. Later, I have to retreat back to bed because my sickness becomes overwhelming again. A power nap later and I’m feeling ready to get up. I manage a yummy dinner but as bedtime rolls around I’m feeling sick again. I feel so sick that I can’t even manage to brush my teeth. Mr C helps me get ready and I gratefully tumble into bed.
1:30 am rolls around and I’m wide awake. I feel like I’m clinging onto a life raft in stormy seas. My stomach seesaws and swirls around. I bury my face into my pillow, groaning quietly so that I don’t disturb Mr C who sleeps next to me peacefully. The inky blackness of the night mocks me and I find myself going to dark places. I’m convinced that I can smell my cancer. The air smells dank and earthy. I think the cancer is leaking out of my pores, oozing onto my pyjamas and bedclothes. It’s just in my head, I mutter. Next, my head trips towards my funeral. What songs would I like played? Hymns? What kind of funeral would I want? What about after the funeral, what would happen to me? I start to panic. Then I chide myself again. I don’t need to think like this. Stop thinking like this. It’s the darkness doing it. It’s making me feel hopeless. I can feel the tears welling up, and I blink them away furiously.
It will be a new day soon and then everything will feel better. I impatiently wait for the sun to rise. Next to me Mr C stirs and he wraps his arms around me, pulling me close. I snuggle in and to myself I start repeating the familiar phrase “It’s going to be okay, it’s going to be okay”.
Please let it be okay.