The Chemotherapy Diaries
I’ve spent the last week of this cycle dodging covid. Someone somewhere seems to have struck a deal with the disease and it has been hot on my tail ever since. The most hurtful detail is that the people hired to carry out the job include my own fiancee, one of my best friends and members of my own family. I’m still winning so far… I would estimate that I have done 10 lateral flow tests and a single PCR this week, and all have come back negative. It’s been close, though.
The first attempt on my life came on Tuesday. Anna and I have been feeling a bit under the weather, both of us waking up with dry throats and feeling more tired than usual. None of the symptoms were too bad, but Anna woke up feeling slightly worse that day so wanted to make sure it wasn’t covid. This was all going on upstairs, unbeknown to my mum and me who were downstairs watching trash tv (Come Dine With Me – the only trash TV worth watching), blissfully ignorant of the situation unfolding upstairs.
“Daaaaaan,” I heard from upstairs, there was obvious concern in the tone. “I’ve just tested positive. It’s only a really faint line but there’s definitely one there.” Mum and I ran into the hallway to find Anna standing at the top of the stairs, worry in her eyes. She showed us the test. There was a faint impression of a line. She did another test, which confusingly came back negative. No sign of a line whatsoever. We thought we’d take a final punt, a decider test. It came back negative again… not a great reflection on the lateral flow tests that everyone is relying on (which we are going to be charged extortionate amounts of money for in England from April 1st). We agreed to keep our distance and sleep in different beds until we could get a PCR to provide a more reliable result, which we got on Wednesday. It came back negative for both of us.
The next hired gun came in the form of my friend Drew. Well, his girlfriend Em was delivering the bullet, but I’m sure he was getting a cut. Tuesday was his 29th birthday, and we had agreed to hang out that night so I could give him his present and the sponge cake that I had baked for him. Pure unadulterated love went into the baking of that cake, and he still tried to take me down with covid. You can’t trust anyone these days. He called me at about 17:00 informing me that Em had just tested positive. I told him about Anna, as this was pre PCR test. Seeing as both of us felt equally at risk of being days away from testing positive, we decided to meet and have a distanced cup of tea. I drove over to his place and stood in the kitchen for an hour, catching up with him and his parents and eating a slice of the cake. It was delicious, if I may say so.
The last attempt came from my own blood. My mum and I went to Nottingham to drop off some stuff for my brother, Alfie. We took puppy Lucy along for the ride. Once there, we decided to take Lucy on a walk around the local area, Beeston. Beeston is where my dad grew up and all of his siblings still live locally. Alfie is doing his PhD at The University of Nottingham, so he has lived there for a while, eventually settling very near to where my dad grew up, and where his siblings mainly still live. Whilst on our walk, we were going past my aunty Jane’s house. We decided to try our luck and knock on the door to see if Jane and her husband, Roy, were in. At first, we thought they weren’t as no one seemed to be responding to our knocks. We then noticed Jane’s figure peering out of the window, gesticulating at us. She then came to the door and informed us that Roy had just tested positive for covid. “Oh, what a coincidence,” I thought to myself, knowing full well that they were part of this ploy to infect me with covid. We stood talking to her for a while outside the door before Roy came outside and joined us. I’m not scared of no covid; that’s what I was showing them. It’s a dog eat dog world, you can’t cower away from these situations.
My immune system seems to have proven too strong for these weasels and I’m still testing negative at the time of writing. I did hit a roadblock today, though. It wasn’t covid who had the last laugh, but my blood. My own blood betraying me, and I’m not talking metaphorically about my family this time. My actual blood, in my actual veins.
I had my blood test scheduled for today at 11:05. As always, I arrived at The Christie 5 minutes early to ensure that I get through the covid questions at the main entrance, and can check into the relevant department in time for my appointment. Punctuality is my middle name, although my actual middle name is James, which is far less interesting. All was going well. I sat down in the waiting area, armed with my novel. These days I know the drill, and I know that these blood appointments never happen when they are scheduled to. Me and my book had a score to settle, as I’ve been ignoring reading lately. The book was feeling lonely, and I was actually excited to spend some time with it. Four minutes into waiting, at approximately 11:09, my name flashes up on the screen. I’ve barely read 2 pages. How things continue to go so well for me, in such a strange way, I don’t know. I reluctantly closed the book and stood up. “What else can go so well for me this week?” I thought to myself as I made my way across the hospital floor and into the bloods office, begrudging their lack of lateness for once.
The nurse who did my test was sneaky. She immediately started chatting to me about whether I had plans for the weekend. I told her that I have treatment the next day so my plans were pretty limited. Just as she was telling me about how she was planning a quiet weekend, she said “sharp scratch” mid-sentence, at the exact time that the needle pierced my skin. I almost jumped out of the seat. It was fantastic. I didn’t have time to do my normal routine of dramatically looking away and saying something pathetic like “oh I don’t like to watch!”. 30 seconds later, I was putting my jacket back on and thanking her. It all just happened so quickly – the waiting time, the extraction and now I was taking my leave. I felt like I’d been given back an hour of my life, on the same weekend as the clocks go forward in the UK, marking the start of British Summer Time. Everything was coming up roses. I had gained an hour back on the weekend where we frustratingly lose an hour in Britain. Covid was failing at hunting me down and now I was leaving the hospital early. Perfect.
I decided to try my luck and track down a nurse to ask whether my oncology team had managed to write a report on my health. I’ve previously mentioned some difficulties with returning to work. Essentially, my employer would not accept a plan I put together for me returning to work without Occupational Health (OH) getting involved first. OH did a phone interview with me where they asked me some fairly basic questions about my condition and the status of my treatment. From a purely medical point of view, the situation looks quite bleak. I’m on chemotherapy that is considered extremely toxic, with a cancer that has an extremely high mortality rate and I am currently classed as inoperable. The report they produced essentially warned any employer to run as far away from me as they can. At one point, the report actually states that I may need to be considered for ill-health retirement… What on earth would the point of that be? I’ve been paying into a pension fund for 5 years max, the first 3 of them with serious reluctance. The only reason I paid into it at that time was to keep my dad happy, who is pension-mad and manages to force them into any conversation about anything. Seriously, try it with him. Talk to him about ANYTHING, and I guarantee within 7 minutes of engaging he’ll be telling you about how important pensions are.
Anyway, to counter this OH report, I agreed with my line manager that I would get a written report from my oncology team. This report would support all of the things I suggested in my return to work plan. Not an unreasonable ask. Getting my oncology team’s time to create this report is difficult, though. Now, I’m not complaining per se, these people are doing incredible work to save people’s lives, including my own. The nurse who told me that they would do this, however, made it sound like an easy task. 2 emails, 3 voicemails to the specialist’s secretary and 3 weeks no luck in getting any contact would disagree.
I stumbled around the oncology department’s corridors looking intentionally lost. A nurse spotted me and came over to ask if I was Ok. Boom, the plan was working. “I’m looking for a member of my specialist’s team. I haven’t been able to work for half a year and want to return to work, but need a report from the oncology team to help my argument that I am healthy enough to return,” she then cut me off. “This is the breast cancer unit. I imagine you’re in the wrong place,” she smirked; I already liked her. After I explained that I have pancreatic cancer and gave her my specialist’s name, she said that his team were in today. She offered to track them down and speak to them and asked me to go back and wait in the waiting room. 5 minutes later she emerged again, recommending that I contact the secretary again, but giving me the details of the 2 head nurses in case I still didn’t get a response. A bit frustrating, but it’s progress. I counted it as a win and left the hospital with my head held high. Things were doing well, until about 17:00.
I was back home when I got a phone call from ‘No Caller ID’. Nothing ever good usually comes from these calls. What you quickly learn if you are being treated at The Christie is that these calls are almost always from the hospital. The other 20% of the time, however, they are from Carphone Warehouse and they’re trying to convince you that they can better your current phone deal. Luckily, this was the former. I honestly would choose a cold call from The Christie, the contents of which could be quite literally anything regarding my cancer, to having to speak to the random call centre operative from Carphone Warehouse. I’m 99% sure it is a scam anyway.
“Hi is that Daniel?” Not a great start. Who doesn’t know that I am, indeed, Daniel? My ego was already bruised. “Yes, speaking,” I heard someone say this on the tube once and have imitated them ever since. It feels so cool. “It’s one of the nurses at The Christie. Unfortunately, your platelets are too low to go ahead with treatment tomorrow. The bottom limit is 75 and yours are 72. We’re going to have to delay treatment by another week.” Well, that’s annoying. Anna and I had planned to go to Dorset next weekend, then I was going to spend a few days the following week in London before my next treatment. Chemotherapy is king, though, and I know I’m lucky to be getting the treatment I am, so I’m trying not to dwell on the minute details of how my plans need to shift slightly to make way for my potentially life-saving treatment. I can be a little frustrated though, right?
It is strange as after a tough few days initially, this has been the best cycle I’ve experienced by a long way. I’ve had very few side effects, I’ve been running a lot and doing some good times, and I’ve barely felt ill at all. It’s almost tempting to say I have managed to forget I have cancer at times, apart from the constant quips I manage to force into most conversations about having cancer. “Dan, can I watch this programme that I’ve been looking forward to for weeks?” an innocent bystander in my house may ask me. “I’VE ALREADY GOT CANCER AND NOW I CAN’T EVEN WATCH COME DINE WITH ME FOR NINE HOURS A DAY,” I respond, tears streaming down my face. I may as well milk it seeing as it is happening to me whether I do or not.
More seriously, though, I have been cooking and baking a lot again this week. One of the major benefits I’ve found of having cancer has been that I can go about doing things I enjoy, like cooking, running and baking, and people look at me with admiration for doing them. “It’s amazing what you’re managing to do considering what you’re going through,” people say. I have to feign some sort of achievement as I respond saying that I’m only human. The honest truth is that I love doing all of those things. I’d rather be doing them than sitting around feeling miserable. I also have a constant sous chef now as my mum is retired and has a vested interest in my cooking endeavours – she gets to indulge in the final products (unless they have chocolate in, as she gave this up for lent; why on earth someone would do this to themselves is a mystery to me). This allows me to summon my inner Gordan Ramsey. “IT’S FUCKING RAW,” I shout at her as she hands me the chopped carrots. It’s fun for both of us, honest.
Whilst discussing my mum, I have a funny little story from this week. We were out walking the dogs together on Wednesday. The sun was out and it was a clear day, so she decided to take her binoculars to indulge in a spot of bird watching (she isn’t eating chocolate so what else is there to indulge in?). At one point, she was looking through the binoculars whilst holding a bag of dog excrement. I’m not sure if she had forgotten it was in her hand or just didn’t care, but it was hanging right next to her face. I tried to get a picture, but she had just lowered the binoculars by the time I had my camera out. I was do disappointed to not have captured the key moment, but I got pretty close.
Anyway, back to my low platelets… with this being such a good cycle, I do find it strange that it is also the one where my platelets have fallen by so much. The nurse told me it means that my body is still working through the chemotherapy drugs and that it may be doing so at a slower rate because of the accumulation of drugs in my system. The result of the platelets dropping is that my blood doesn’t clot well. It helps to explain why when I removed the cotton bud after my blood test yesterday, it was covered in blood, and why it has left the below mark ever since. Gross.
So, although chemotherapy takes the overall victory this round, I do get another week of feeling good. Better just crack on and enjoy it, even if I won’t be able to go to the beautiful Dorset coast for a little bit longer. Lucy and I have been on a few road trips recently. The below picture was taken as we went to see my best friend Luke in Huddersfield. She really is a little heartbreaker.
I hope everyone has a lovely weekend. Here is a vibey song that reminds me of dancing in the sun at Glastonbury in 2019, before I had ever heard of Covid and when I would have bet every penny I owned that I wouldn’t be fighting cancer before the age of 30!