I’ve had the chance to relax and enjoy christmas with family and friends feeling relatively well albeit a little pain and with the loom of treatment casting a small shadow over my head.
Now begins a new phase of endless waiting, endless needles and drips and my daily 15 minutes of embarrassment where I have to let everything from the waist down hang out for the medical world to see and crisp with their radioactive laser beams.
I have completed week 1 of 5 of my chemo radiation treatment which in theory involves an hour of 5FU each day plus 15 minutes of radiotherapy but in reality has involved anywhere of between a 4 and 7 hour day as I wait endlessly to be seen by my various doctors and chemo nurses who are stretched to capacity. I’ll give radiotherapy credit, they’re pretty on the ball and if there is a delay another ‘room’ will take over and help out with excess patients.
I know I sound pretty ungrateful but starting chemotherapy is a scary time for all cancer patients. On my first day there was an influx of patients who needed to catch up on treatment from over the Christmas break and I was placed in an overflow bay on the ward where normally fluid, blood and platelet transfusions would happen. After being ignored for about 30 minutes, I was approached by nurses on 3 occasions who asked me why I was there. I did wonder if it was a trick question but replied ‘5FU chemo’. All 3 nurses stared at me in abject horror and ran off saying they ‘couldn’t do chemo drugs’. I was very confused and very stressed, this was my first time on the ward, I had no idea what to expect and nobody seemed to know the reason why I was there. After about an hour and a half, a chemo nurse came along, asked me the same questions again and finally started the infusion.
I’ve got used to the daily vagueness that I’m shown on this ward, where nobody knows your name, where you’re kept waiting 2 hours past your appointment time, where you’re asked over and over what you are doing on the ward and where over stressed nurses shout at each other across the ward and publicly shame each other to the patients for any misunderstanding or hiccup in anybody’s treatment. I can imagine that it is a stressful job, these nurses are tasked with administering toxic drugs into someone’s system which with careful balancing can either cure or kill a patient… but it is also their trained specialism. I feel disappointed that I feel the need to write about the under par care received at a vital point of my treatment as it is the first time I have ever experienced anything less than outstanding at my hospital.
On the plus side though, the radiotherapy team has been magnificent so far. They are super efficient, I rarely have to wait longer than 15 minutes to be seen, they show they care and they will have a laugh and a joke with you making the whole ‘uncomfortableness’ more comfortable. Above all, they have bothered to learn my name. I don’t get called out now, they come up to me to let me know they’re ready and they seem to spend every day chasing the chemo ward to find out where I am (which usually results in the chemo nurse saying who!?).
So learnings from my first week – all it takes is for someone to acknowledge you by your name, to make you feel less of a chemical lab rat and more of the person that was there before the cancer. Radiotherapy – you have this down. Chemo – you need to get your shit together.