Life doesn’t stop when you are sick

This year, 2017, has been a heck of a year for me. While I’ve been in a fog of grief, illness, surgery, chemo and hospitals, life has carried on as normal. I thought that I would describe what life is like when you’re seriously ill.

After I lost my baby, Leo, I went to Florida to see my parents and stayed for a month. It was such a hard time as the loss was still so raw and I was still counting how many weeks pregnant I’d be. Mom and Dad would find me crying occasionally. I went to bingo with Mom and read books in the pool. Chris and I would go cycling together and on one occasion, we had to make a stop so I could puke up my pancakes and maple syrup.

Amy Mattingly at bingo

Chris and I drove down to Key West to spend some time together. We’d go out for nice dinners and I’d struggle to eat a salad, only to come back to the hotel room and chuck it all back up. I couldn’t keep anything down except for virgin piña coladas and milk-based fruit smoothies. Chris began to insist he wasn’t hungry at dinnertime due to the heat, but I could tell it was a sympathetic hunger strike.

Amy Mattingly in Florida

(I vomited the eggs benedict)

We’d go for romantic walks along Duval Street and I’d get a whiff of grilled meat and start retching. We’d go for happy hour and I’d sip my tap water while Chris had a mojito and I’d wish that I could feel better because I was ruining our trip. I haven’t even told Chris that I pooped my pants three times on that trip. We ended up having to leave early as I was miserable and couldn’t eat.

Amy Mattingly in Key West

I felt a bit better once we got back to my parents and I could control what food I was eating. Crest Whitestrips started to induce vomiting. Orange juice, too.

I went back to work in March and would often have to go and have a lie down on the couch after a painful vomit / poop session (my nausea was closely related to bowel movements). The nausea meds that I got from my emergency hospital visit helped, but they’d make me so drowsy I would have to nap. If the meeting room with the couch was in use, I’d lie on the floor of the office. I was so sick. I began to miss critical client meetings and commitments.

There were weeks at home when I was unable to get out of bed to do anything but run to the loo. I would update my friends on Snapchat. Chris would come home and try to get food into me and try to coax me out of bed. We’d sometimes go to the grocery store and I would retch in the dairy aisle at Sainsbury’s. Eventually, I had to wait in the car.

The week before surgery, I was busy managing some renovations at our house. We had an IKEA Pax wardrobe built into our bedroom. Then we had a new hardwood floor put in the top bedroom and we exposed and repaired the stone wall. I managed a few ‘good’ weeks while this was happening.

My brother and sister-in-law arrived with my baby niece while I was in hospital. It was a trip they’d planned ages in advance, but it just so happened that I was in recovering from surgery when they arrived. I had planned to show them all of my favourite places but I obviously couldn’t. My two baby nieces met each other in my hospital room and I could barely enjoy it because I was in so much pain and my abdomen was swelling with ileus.

In the week home from hospital, my car was backed into out front of my house. I still get calls from insurance companies who want me to sue the guy. I see the unknown number on my phone and think it’s the hospital. I tell them I am dying of cancer and ask them to remove me from their lists but they still call.

On the day after I had the news that my chemo didn’t work, my cat came home limping with a bad sprain and we had to take her to the vet.

Since January, I’ve also been managing a massive home renovation that has been in planning stages for years. This is the dream house; the one we bought to start a family in… It’s been a welcome distraction but an expensive project and I feel guilty about the amount of debt Chris will be left with if I die. On top of that, the house is noisy, full of dust and often cold. Not exactly the ideal rest & recovery environment! I’ve given instructions from bed more than once.

During the days, I hang out with a lovely friend of mine who is also unable to work. We have coffee and go for nice walks and talk about treatment. We also talk about pets, crafts, homemaking and our dreams for the future: dreams that seem so far out of reach now… Still, they are what drive my determination to carry on.

I feel like I’m on the sidelines watching while my friends celebrate birthdays, announce pregnancies, take lovely vacations, start new jobs and go out partying. I wonder if I’ll see my next birthday. I wonder if my fertility will ever return. I can’t travel on chemo. Parties make me tired and there’s cancer in my liver so I don’t fancy a drink.

I am celebrating the small victories: a good blood test, getting out of the house, putting on 1kg, getting my Panitumumab rash. I feel as though I am stuck in quicksand as life carries on around me.

The tree outside my window is a spectacular shade of red which I have to appreciate each day because I wonder if I will see it like this again. I won’t allow myself to become excited for Christmas; it’s too far ahead.

I’ve been out of work so long that I don’t hear much from my colleagues and when I do visit, the office is full of new faces. I miss work. I miss having small problems to solve. I miss my routine, being good at something and having a creative outlet. I mourn for my professional career.

Volvo has texted me a reminder that my car is due for maintenance. Bills need to be paid. Walls need to be painted. Roses need to be pruned. I need to have treatment every two weeks.

I’ll leave you with these words from a wise friend which describes it perfectly: “This is why we are fighting to stay alive. Just to live normally.”