I have finished chemotherapy. I was going to write ‘completed’ but this is not wholly true. I was due to have six cycles. But my body started to shut down after four. So I made the decision along with my oncologist to stop as the risks were outweighing the benefits.
I haven’t wanted to write for the duration of this leg of the journey. I shared this with a very good friend who reaffirmed that for an experience to have authenticity you have to move through it first; to understand it. I didn’t want the opinions of others while I was trying to stay afloat. You are free to those as I am free to share. Once information has been shared, it is not up to me how it is received and I have to respect that. But I couldn’t entertain the idea of hearing other people’s personal views around my own journey until I had found my own.
So here we are, I find myself in front of the screen once more to try and make sense of the madness before I am able to articulate myself verbally.
Chemotherapy is a bastard. The end.
I had three cycles of FEC, an acronym with each initial standing for the drug name. The infusion would happen on a Tuesday. The first 72 hours I would be floored and then very gradually I started to come out of the hole, at least physically. The steroids had an entirely surprising effect on me which rendered me useless for a further 4 days. But after that, week two and week three of each cycle were a breeze in comparison. I am keen not to dwell too much on details. For a number of reasons but mostly because it is very individual and personal. Although I suffered in the immediate term, my body seemed to bounce back remarkably. I was working and salsa dancing in my recovery weeks. I put this down largely to luck but those around me would disagree and state my disciplined approach to nutrition, wellbeing and a shit load of acupuncture accounted for far more than I give credit. Also, this is a time of my life that I am happy to forget. Not the learning and growth that has happened as a result but it has been the most traumatic, challenging time of my life and I would like to not relive these past three months upon rereading this in years to come.
We approach chemotherapy cycle four. Of course, it should fall on the first anniversary of my mother’s death. I am already anxious as the treatment plan changes at this point. You are shifted on to a different cocktail of poisons with a different array of fun side effects to contend with. Not to mention the steroid situation. I will come back to this another time.
Two days post infusion and I’m feeling OK. A little sensitive but I think I have walked this one. Smug pants on. Ahha! The side effects you all talk of have passed me by. I even manage an hour or so of salsa dancing with friends. Granted I sense something isn’t quite right and I can’t make it through a three minute dance without nearly throwing up. But I am still standing and I can totally cope with this new drug, due to my resilience, my strength, my…FUCK ME. By day three my skull feels like it’s stuck in a vice, my ears are agony and my teeth feel like they are falling out. By day four I can barely breathe from the pressure my chest is under and day five we call 111 who promptly send an ambulance. I request not to be taken in unless I am not given another option as I would rather feel like shit at home than like shit stuck in a hospital corridor all night.
So after an hour of being hooked up to wires and monitors in my living room in front of my very new boyfriend who has watched me deteriorate before his eyes, my heart rate finally stabilises and the pain eases. Temporarily.
But over the next two days things go downhill. Combined with sleep deprivation that I have never known before (I’m a mum…I know sleep deprivation) an inability to eat anything and a consistent crushing pain across my ribs, lungs and heart, I am almost beaten.
I strongly sense that something isn’t OK. I am barely functional. I have an appointment with my oncologist just after the peak of the cycle. Who takes one look at me, assesses my ECG and other results and gives it to me straight.
“Sam we have two options. Stop now and get the ball rolling with radiotherapy. Or we put you back on to FEC for the remaining two cycles but because your veins are compromised now, we will need to go through a port in your chest. There is no evidence to suggest any more will be of benefit but we know you can tolerate that drug.”
(I could only tolerate FEC in comparison to Docetaxol-the later drug. If you had asked me about my tolerance to FEC while I was in it, without having anything worse to frame it against-I would have told you to shove it up your arse)
I broke down in the office and started to ask all the important statistical questions. I asked if I could have a couple of days to think about it as in that moment I just wanted it to end. I was beyond exhausted, alone, emotional and in pain. I would have agreed to anything. I needed to find the ground again before making that call.
Two days later I made the call.
So here we are. I am not having any more chemotherapy. It was having a detrimental effect of my kidneys, heart and lungs and deep down I knew that there would be some serious longer term damage to my vital organs if I continued.
The whole way through my breast cancer journey I have had decisions to make. Many people don’t need to make any choices. They choose not to make any choices. They just do as they are told without question. Which is fine by the way. Sometimes I wish this could have been my way. But it isn't. For the duration I have been the patient who has challenged at every corner. Not because I am trying to be different or make waves. But because this is my story. It is my body. And if I have a question or am unsure about something then I (nicely) demand a discussion around it. Every doctor, consultant, surgeon I have encountered, although have the best intentions for me, are under so much stress, pressure and restrictions that it is not enough. I have to be my own advocate because I am walking proof that things go wrong. Things get missed, misdiagnosed and oversights happen. If I hadn’t questioned at stages in the last 18 months I would be telling a very different story right now. If I hadn’t made waves at times because I wasn’t convinced enough was being done for me, my life expectancy would have been dramatically reduced. So yes I trust the doctors. They are very knowledgeable and I am grateful for the care, support, treatment options. But I trust myself more. I can not analyse a CT scan, I do not know what shadows are on MRIs, I don’t know about the tell tale signs of an abnormal biopsy. But I know me. I am responsible for me. I know my bones and my heart. I know my resting pulse and I know my lung capacity. I know how those things feel. I know my body instinctively better than anyone else and I know I have had enough poison. What I need now is rest and love before the next phase of treatment.
I wanted to clear something up. I am not dying. Unless you are someone who believes that we are all just working our way through life until we use up our quota, then yes, like you and everyone else, I am dying.
I have had a very aggressive form of treatment but it is ADJUVENT therapy which means basically it is a mop up job. There was no evidence of cancer upon starting chemotherapy. But for cancer to show up in imaging it has to be of a certain size and so due to the extensive lymph spread there was always a chance that there were further cancer cells around other areas of my body. The chemotherapy was to kill those potential cells. There is no measure of success / progress for adjuvant therapy because there was nothing to measure to begin with, so you are sent on your merry way and hope that it did what they said it should do. But you don’t know. Because you didn’t know before. But I am OK. This is something I am going through now but that doesn’t define me and certainly wont be the end of me.
I don’t want to be known for breast cancer, nor flatness forever. This is my story now but it is only part of the story of me. I have chosen to share my story to shine a light on all of our vulnerability, of the importance of being your own advocate and knowing yourself enough to trust your intuition. And most importantly to show that even when you are on your knees, you have the strength to stand again. I chose to share my story because it helps me make sense of everything and because I love life. All of it. The love, light, rainbows, darkness, sadness and fear. The ups and downs, shocks and peace. It is all in there. And I refuse to pretend that it doesn’t exist in all of us. So just because you see me laughing, smiling, dancing, playing, you also know now that I cry. I fall. I grieve. I make mistakes and learn from them. I have mountains to climb. Just like you. We are not so different after all.