I remember being really pleased I had a ‘window seat’ when I was told my bed number. And it was a really sunny day and weirdly I felt quite perky and calm about the whole thing.
I’d had my Hickman line fitted (Though that had been a gruesome experience where they made a cut in my neck and another in my chest and then fed a tube into my jugular and back out.. I felt the whole thing.. they only used local anaesthetic for the cuts. I never want to experience that again.) So the line meant I could get the chemo and fluids directly into it and save me the trauma of nurses trying to find a vein.
And it all began quite easily with acres of paperwork to fill out first and then a few hours of fluids. So it was evening before I got my first bag of chemo. I remember being surprised ‘cos it was bright orange like Irn-Bru and that made it scary ‘cos it looked toxic. And when it was attached to my line, I could see it creeping along the tube.
Then I got that momentary panic, wanting to rip it out and run (actually crutch) away. But I didn’t and the toxic orange liquid went up my line and there was no going back. And the nurses removed their protective gloves and placed a red bag over the chemo on the drip stand (no doubt a warning to other nurses that it was chemo and not just fluids) and walked away.
I sat there wondering how soon I’d want to throw up and waiting to feel that lurch in my gut and cold sweat. So I guess eventually I must have fallen asleep. I spent 3 days in hospital that time, being given chemo and fluids and anti-sickness meds including some pretty strong steroids. And when it was almost time to go home I was starting to think maybe I was one of the lucky ones who wouldn’t get sick. But then on my last half day I started throwing up…
I still got discharged though, with a ton of anti-sickness meds and I was elated to be leaving that awful place.
It was the next morning that it hit me like a tone of bricks. I felt so sick and completely dizzy and unable to move. I remember telling my mum that I couldn’t handle it and that I was going to tell the oncologist that I wanted to stop it all. I felt so deflated physically and morally.
But a couple of days passed and I felt marginally better. And on the Wednesday that week saw the oncologist and didn’t tell her I was stopping. It was only when I saw her that she explained I’d been meant to regularly take all the drugs I’d been sent home with. As opposed to what I was doing – taking them just when I felt sick. I guess the overworked nurses didn’t make the time to tell me that. And the doctor confessed that one of the anti-sickness drugs had side-effects including dizziness (I later learned that they start you off on the cheap drugs and only give you the good stuff if you demand it…)
Thanks to having such a nad reaction this first-time, I was prescribed a ‘syringe driver’ for all future cycles. This was a massive comedy syringe filled with a cocktail of drugs that was attached to a battery pack releasing the drugs into my line over 5 days. Great for sickness control. Not great when you already have crutches and drip stands to monoeuvre.
Looking back I have no idea how I managed to shower and dress with all that. I guess I must be more imaginative than I think…
thank you for sharing Al
xo
so honest – so heart-beaking
Alan, I worked at the same agency as you while working on the Fringe website with Louise. I was deeply saddened to hear of her passing and how much you’ve both endured over the past number of years through reading her blog very recently. In the time I knew her, she never let on how seriously ill she was. Her strength and courage are inspirational and her writing so powerful and honest. Thank you for sharing such a personal and difficult time. I did the Race for Life 10km today and thought of Louise and her bravery. Hope you continue to find the strength you need. Jen
Tonight I was thrilled to see Lou in the Grazia magazine of 25th June. I’m sure she would have loved that!!
Everything will be fine. Just keep that hope intact 🙂
Another comparative stranger but our daughter worked with Louise on the Fringe and your blog has given real support to many. With every best wish to you and Lou’s family