Today is Day 14 of Cycle 1 which means two things. First, it means that tomorrow, all being well, I’ll be back at Mount Vernon Hospital tomorrow to begin Cycle 2. Second, it means that I have made it through the first Cycle. 16.6% done. So how were those 14 days?
Day 1: Infusion Day
Unless you’ve been in a chemo treatment suite it’s hard to describe the atmosphere. I’m sure they’re not all the same and I’m sure they don’t always feel the way they do on Christmas eve. But that’s all i know. Imagine a ‘seen better days’ church hall filled with recliner armchairs and the constant hum and buzz and whir of medical machinery. Not the nicest place you’ve been but not the worst. warm. Gently lit. For the most part calm. I spent 7 long hours there.
Everyone was very friendly and chatty. A friend who has been through chemo warned me not to worry if the treatment turned me inwards, away from others and focused only on self. I’ve found this to be true. It is hard to look outwards when you are so hyper aware of the things that are going wrong with your body, or could be going wrong, as well as trying to maintain your mental and emotional well being. I can imagine this is true for most people. But not in that room. In that room everyone was on the same side, seeking comfort and solidarity from strangers on the same journey. Everyone smiled as new people walked in, wished those leaving well and chatted as though we were all stuck in a lift together – you don’t want to be there but conversation will pass the time. People exchanged magazines, PICC line tips and compliments on hair loss covering solutions. The mood was hopeful. As i was waiting to go in a man in his late-70s walked out and cheerfully exclaimed to me and the others that “only one more session to go and this bastard on my bone will be done for and i can get back to all that bungee jumping and hang gliding the brochures tell you you’ll be able to do”. Then he threw a scarf around his head, laughed with pure joy and strode out the door.
Most of my time in the room I was consumed with practicalities. How do i plug my iPad in? Can the 80 year old man next to me see the screen? If so, can i still watch the downloaded show that i know has a sex scene in episode 1? what’s the etiquette? How do you do you get to the loo with two pumps on stands attached to you? Why did i drink so much water when i’m also having litres of saline pumped into me?
Beyond those practicalities my main thoughts were: “i feel so young” and “how do i think I’m doing compared to everyone else?”. The former I’m getting used to slowly. Most people there were 30 years older than me. There were three others of similar ages, one close enough to talk to who slept through her time and two too far away but close enough for a held gaze and a supportive nod. Thank you.
It is invidious to compare but how do you not? Nobody i heard ever mentioned ‘what they were in for’. Some people looked worse and some better. But how to know prognosis and treatment plan? Some people were there for an hour and then done. Others, like me were there for hours. What does that mean? Is anyone there on the same treatment as me? how are they doing? how am i doing? Why does my machine beep some times and others don’t? How are some people managing to sleep here? Did i plug my pumps in when i came back from the loo? Be quiet. Don’t worry. None of that matters. You’re all on the same side. let the drugs go in and do their magic. Deep breath. Deep breath. Deep breath.
In the end the 7 hours were relatively uneventful. One of the drugs renders you hyper sensitive to the cold. As that was being infused i went to the loo, where it was slightly colder, and that kicked off some nausea, muscles spasms and paralysis of my throat. All of this had been covered in the many “what to expect…” briefings and so did not feel as dramatic as it my sound. flag down a nurse. tell her what’s happening….”don’t worry, i’ll get you some hot tea, that’ll help”. And help it did. Couldn’t be more British. While i was there two fellow travelers had adverse reactions. One vomiting on the floor then apologizing extensively to a nurse who was matching her apologies for not anticipating and being there with a tray. Again, very British. The other was one of the youth element and was having at least one of the same drugs as me. He had a similar, but i assume stronger, reaction to the cold as i did. Team of staff round him quickly, oxygen mask on, heart rate, blood pressure, doctors not nurses. A stern instruction that he was fine and just needed to breath, that the shortness of breath was just anxiety. Then calm. The doctor letting him know that the effects were worse on second cycle than first as the drugs were infused quicker and that he needed just stay calm. And a final note to him that the pain in his arm was because he had chosen not to have a PICC line. I looked at him, knew that was where i could be in a few weeks and then looked gratefully at the line inserted semi-permanently into my arm.
I arrived home having traveled in a double layer of down jackets, scarf and arctic hat. I was dripping sweat from my brow and went to get changed. Rookie mistake. Big temperature change, light-headed, ashen-faced, retching. Straight in bed with hot tea. Better in 20 mins. Hungry and wanting to see my in laws i went down to the kitchen. The kitchen that’s colder than the rest of the house and has marble floors. With me in thin socks. Wash your hands before dinner i remember. Tap on, hands under – ah it’s ice cold. Light-headed, I’m going to be sick, grab the sink – ah it’s marble and freezing. Now I’ve been sick. Retreat to a warmer room and get under a blanket. Tea. Better in 5 mins. Remind those in the kitchen not to touch my toxic vomit – “don’t worry we weren’t planning on touching it”. Ate three portions of dinner. Winning.
Day 2 & 3
Christmas day with family. Boxing day with family. Both nights the steroids kept me up for hours and hours meaning i didn’t get out of bed until near midday but i still managed to help get Christmas dinner on the table and to watch my children open their presents. Winning. Three portions of Christmas dinner. winning. Splash of wine. Winning. Drove myself to and from the hospital to get unhooked from my take home pump (more on this next time). Winning. Drug tracking via an app, alarms going to to tell me which pill to take when.
Day 4-6
Like a middle of the road hangover after a very dodgy kebab. Nauseated but not being sick. Tired, very tired, but able to function and get out of the house for increasingly long walks each day wearing clothes designed for 20 degrees colder. Bought myself some slippers – apparently a critical ally in the war on cancer. Symptom logging and temperature tracking.
Day 7
The first day of feeling fully human. An outing to a farm with the kids. Obviously shit, but normal levels of shit because it’s fundamentally dull and we’ve been there three dozen times before. Not shit because of chemo. Winning.
Day 8-10
Normal. Sleep pattern slowly coming back to normal after the disruption brought on by the steroids.
Day 11
In for COVID swab and pre-cycle bloods. Very much felt like eyes had turned from Cycle 1 to Cycle 2. Am i ready to do this again? Yes. Home for and honest to God workout in the garden. I felt strong. This was also the day most people went back to work. Not being there i felt sad to be missing out and oddly lonely. I miss my work and the purpose it gives me. I miss my colleagues more.
Day 12
Standard phone call from the oncology team. Hows everything going? Ok, well all those side effects sound pretty standard and acceptable. We can give you this to help with that. Now you know how to deal with that by doing this. One of my bloods is below threshold to start Cycle 2. But the doctor is confident it’s “nothing to worry about”. Bloods are now being taken earlier in the cycle (due to covid) when that bit of the blood count is lowest. She’s confident that when they re-do my bloods on Friday morning we’ll be good to go. This was the first time i felt like i was losing. Despite her reassurance it made me feel like i wasn’t holding up my end of the bargain – they were bringing medical miracles and all i needed to do was generate some white blood cells. Was there anything i could do? No. What if i exercised more? or less? or changed my diet? or slept more? No. Nothing to worry about – just let your body recover. Suddenly the prospect of having to delay Cycle 2 by a week makes me desperate for it, hungry for the poison and the side effects to begins again.
Day 13
A call from my specialist nurse to check in on me. 30 mins chatting. Comforting like an old friend. Yes, still looking at May for surgery but take it one day at a time. One day at a time.
Day 14
Childcare. Family returning home. Making my chemo sandwich and packing my bag. This time I know what i will and won’t need. Fewer books. Less water. A lighter mask. Fewer shows downloaded. Last infusion was the most text messages I’ve ever received in one day. There’s no time to catch up on Netflix when there are so many people to thank for their support. Thank you.
On to Cycle 2 (pending bloods…..)
Oh Well Here We Are... 