At this point in my journey I’d finished my two cycles of chemo. I was given a second PET scan after the completion of my chemo to see if my body had reacted appropriately or not. Basically, if the scan came back clear, I could move straight onto two weeks of radiotherapy. If it came back with residual disease, I would have another two cycles of chemo.
I seem to remember not having to wait too long for the results of the scan. I think it might have literally been the day after. Either way, I received my results sitting on a train into London, sitting opposite my mum.
My phone rang, I answered and about 20 seconds later, I received the best news I could have been given at that point: my scan came back all clear. To be precise, the exact term the woman on the end of the phone used was that I’d had a “complete metabolic response”. As you can imagine, I thought it must mean something positive but I wasn’t totally certain of what that term meant, so I asked her to clarify.
“It means you can go straight on to your radiotherapy. You won’t have to have chemo anymore and you won’t have to see us again.”
It was amazing. It meant that I could finally start recovering from the two months worth of constant nausea and just generally feeling awful. I was told I was to start radiotherapy a couple of days later.
Unfortunately, my feeling of ecstasy would be short-lived. It was a couple of days later that I got a call from the hospital again.
They wanted me to have another two cycles of chemo before I started my radio.
It literally came out of nowhere. Everything was going according to plan yet for some reason my doctors felt like exposing me to more chemo.
To say I was pissed off was an understatement. To me, my doctors had just completely gone back on their word and decided to change my treatment plan for no reason.
I relayed my thoughts to the person on the end of the phone in, well, let’s just say, not the politest of ways… I passed the phone over to my mum after a while who has pretty much the same reaction as me. I remember going up to my bedroom and crawling back into bed, breaking down into tears out of pure frustration.
About an hour went by before my brother came into my room. He said that after the phone conversation with the oncologist, my mum thought I should have another two cycles of chemo, but that ultimately the decision was mine to make.
It was horrendous. I had gone from a feeling of pure ecstasy to feeling utterly betrayed in the space of a couple of days. How could my doctors do this to me?
After a short conversation, my will to not have more chemo caved and I agreed to two more cycles. I didn’t sleep well at all that night.
The next morning, I’d changed my mind. Why should I have more chemo when this was the plan all along? It just all felt unnecessary.
So that’s what I told the CNS when she rang me in the morning to find out my decision. I made it clear that I felt betrayed by my doctor and that there didn’t seem to be any logical reason for me to have more chemo.
The CNS was slightly taken aback and suggested that I come in and speak to my oncologist in person the get a better grasp of why he had made this rather bizarre suggestion.
I remember walking into my oncologists office ready to explode with anger – but I knew I had to hear him out. This was my life after all. It wasn’t something I could make and ill judgement over based on my emotions at the time.
I sat down in the chair next to my doctors desk and prepared for a lecture. He looked pretty nervous as he began his explanation.
It turned out that his reasoning to give me more chemo was two-fold: 1) a new study had come out right at the end of my original plan for chemo had finished suggesting that people with my stage of Hodgkin’s lymphoma had a slightly better (and I mean marginal) survival rate; and 2) I was young so although my original treatment plan would suffice, my body would be able to take another two cycles of chemo and therefore a greater chance of eliminating any stray cancer cells.
After what felt like about a half hour-long speech justifying this new treatment plan, I still wasn’t convinced.
Not only were there MANY things I picked out about the study – such as a marginally better 5-year survival rate (which for Hodgkin’s is incredibly high at around 92%) not really making that much difference to my prospects – but I also argued the fact that I really didn’t want more chemo and therefore a higher chance of damaging my healthy tissue even further. So what I was young! What’s the point in exposing myself to more chemo for an extra 2-3%?!
My doctor continued to try and talk me into it but after a while I simply said “I’m sorry but you really haven’t convinced me that this is a good idea. If you’ve convinced me of anything it’s that I’ve already done enough.”
To my surprise, the CNS in the room with me was nodding. She agreed with me and so did my mum.
Frustrations to this day
The worst part about all of this? My doctor made out that the additional chemo was all part of the plan from the start.
That’s right – apparently I was supposed to have 4 cycles and then two weeks of radiotherapy all along. This is despite the fact that during the conversation regarding my second PET scan I was literally told that I’d fulfilled my chemo treatment and that I wouldn’t have to have anymore. And this is despite the fact that my own CNS phoned me after the meeting with my oncologist to confirm that the plan was to have two cycles and, dependent on the results of a second PET scan, I would either move straight onto radiotherapy or onto two more cycles of chemo. MY OWN CNS CONFIRMED THE ORIGINAL PLAN.
Even so, every time I go to for my now bi-annual check-ups, I am told that I refused to complete my chemo. Like I was the one that changed the plan!
The whole scenario means that I now have to live with the decision I made for the rest of my life – a decision I don’t even know was the right one. I have to live with the fact that I had to go against my doctor’s decision which in itself feels very alien (because you always trust a doctor’s judgement right?). I went with what was originally promised yet my doctor made me doubt myself so much to the point that I don’t know whether I should be blaming myself if, God forbid, my cancer were to ever come back.
You’d think that maybe losing my hair or feeling like shit 24/7 would be what I found the hardest part of my time with cancer. But no – THIS was by far the worst part of my entire cancer experience.