By Alysabelle Resident.
Finally they both came in, I look at them there was introductions and they pointed towards picture of themselves, I thought and shrugged we are reduced to looking at pictures of doctors, specialist and nurses because of the mask wearing due to the pandemic. I nodded. I was anxious for them to tell me my prognosis. I said, 'What are my chances?' My Chemo Oncologist said 30 percent.' Now I wasn't just shocked about cancer, I was devastated. My life as I knew it changed from that moment on. I was barely able to continue any conversation, and all I could think of was 'I'm going to die.' This was it, a death sentence hanging over my head and nothing and no one can do anything about it. After all 30 percent was a horrible outcome. I disliked him of course at that moment, that was my emotional feelings inside. I started crying so much so and I look at him upset that he just dashed any hope I was clinging to.
He talked about treatments. 'Treatments,' I thought, 'why bother?' And he walked off to get papers for me to sign. I thought how do I leave here without falling apart, even before I even get to the exit? I couldn't even fathom walking at that point. I was sitting there rooted to my chair 'shocked' He came back and explain to me that some people, even thought not a large percentage, can live 5 to 10 yrs, and he even had a patient that still living, and its been over 10 years since his treatments. It may or may not happen to you. So he talked about a plan with both Chemo and Radiation treatments. It was to start in two weeks. It will be aggressive, three chemotherapies, one from the start, one in the middle somewhere, and one in the end of the six weeks period. And radiation everyday except weekends.They talked about the side effects and the medications I would have to take prior and during and after the treatments and watch for any sign of a fever. I was told ' stay positive.' I thought, "are they are out of their minds, 'positive'? What is positive about cancer?" I later learned for me it was focus, not positivity, during treatments. They both told me that they will be there every step of the way, they gave me several leaflets with information and a phone number for the Cancer Center whenever I needed, which I did. And I was told 'get your affairs in order just in case.' I now had a Cancer Team.
While I was sitting there I look at both of them and realized that I don't want them to know me with a mask, my name with a mask, no thanks. They couldn't see my true expression and I couldn't see theirs, who could? So I stood up and I said, 'Look at my face.' I removed my mask and I said 'this is me,' and quickly put my mask back on. And surprisingly they stood up and removed their masks and their face guards and said 'this is us.' That small gesture meant a lot to me. Soon after, I got a call to come in to get a scan done and the technician placed four tattoos. They really are called markers for radiation. I cried. It hit me the realization that soon the treatments were about to start.
For my family and friends in real life, that was difficult of course. They were stunned, but their support and and love and prayers meant a lot to me. I also picked one person to give my updates to everyone else. I knew I wouldn't have the energy to speak to each one individually, or so I thought. And I was correct. There came a time where I actually just texted the person because one of the side effect of the radiation would be difficult speaking because of the location of the treatment.
For online friends, I did the same, picked one person who meant the world to me, my partner, to tell a few selected friends. I also couldn't tell everyone on my list. It was way too much. And even still today, some don't know what I have been through. Then came the morning of my first chemo and a few hours later my first radiation. I can't speak for every one going through treatment. For me it was 'rough.' My second treatment of chemo was worse, 'Hell,' and I felt like death was on my doorstep. I understood then and there, quite clearly why some people going through treatment would want to stop completely. I even thought to myself after several weeks I wont go through the last chemo treatment that was planned .
But I forged on, and did it after all. Also I found difficulty in standing without help or holding on to some kind of piece of furniture or even a wall. One memory I had, I recalled standing in the kitchen just trying to make myself a sandwich holding on to the counter for support, because surely I was going to fall. I managed to butter a piece of bread. I didn't fall, but that's how weak I was. Radiation was a different process, the more you receive the more you start feeling the symptoms of radiation, the sunburn feeling on my back which I got cream for, the fatigue also associated with chemo and radiation combined, the nausea, the difficulty swallowing. I even had to have an IV drip at times so I can get fluids down. I didn't think water would have been an issue swallowing. I thought if anything food would have been the most difficult, that came later.
At some point I was determined they would both get to know more then just ' I'm a cancer patient.' I finally had my chance. I had an appointment several days later with the Chemo Oncologist. I wanted to feel some kind of human connection with him. I didn't feel any up until that point. So I decided to show him two pieces of poetry I had written. I figured what better way to get to know me but through my poetry. There were two pieces, one was light-hearted, the other one more profound. First poem, he smiled. The second one he understood it quite well and pointed at the poem and started at me speechless. I told him 'I know 'and smiled =. I told him I understood that he faced not death personally, but those who are dying and if not dying then those who like me, are receiving horrible news. That couldn't be easy for him and the distance emotionally is key. He talked about his family, wife and children, briefly. I looked at him far differently then I did before and I knew he looked at me far differently now.
Then came the day of my last treatments. Tired as I was, I was elated. It was over. You're told for many months the treatments will still be working in your system. It was longer for the radiation. Two months after the treatment. I ended up with a fever and had to stay at the hospital overnight and start antibiotics. More times than not, your body can start an infection. But not always do they know where its coming from. Then they started talking about immunotherapy. It would have to start within 14 days after the treatments were over. There are benefits as well risks involved, and side effects. Not everyone is a candidate. I wasn't one of them, after all . My last physical appointment with both Oncologists, after talking a while we all stood up. It was time to go. I thanked them. And as I was going to shake their hands, but instead I was soon engulfed in bear hugs from both of them, Pandemic be damned. After that, communication between all of us was to be done virtually.
After three months, I was going for my very first scan to find out how the treatment worked. I was anxious and stressed out for the findings. I was happy they both told me that they saw a decrease in the size of the cancer. For a while the scans are every three months, and then eventually its every six months, and then yearly, if all goes well. So far I have done all the three month scans and the cancer continues to decrease. I just finished my first six month scan, and again with the same results. I'm fully aware that some people, depending on their treatment and the length of their treatments, how difficult it is. Truly my heart goes out to them and in some ways I am fortunate because my treatments, although aggressive as it was, wasn't as long as some people that have to go through it longer than I. There is always someone worse than you. During the time you're going through treatment, you have your cancer support team, you depend on them where I always depended on myself and been always there for others. But this time it was different, to learn to lean on people. It was so foreign to me. You also don't realize how focused you are through treatment, till you don't have to be anymore. It's a huge relief, but at the same time you say to yourself 'What now?' Emotional therapy is the key before during and afterward treatment. I would recommend it highly .
Will I always be a cancer patient? Yes. Do I still have cancer ? Yes, although I'm in remission . Will cancer ever return full force? It could. Will cancer always be part of me the rest of my life? Yes, if not physically, emotionally. Do I have a scar from the radiation location lung? Yes Did my voice change due to radiation ? Ye . Do I want pity from anyone ? NO! I never wanted that in my life and certainly not now. I was victimized by cancer, but I refuse to be a victim. Did I ever question at times 'Why me about my cancer?' I sure did, but then again....why not me?
Writing about my journey, my cancer, it was difficult at times. But if it helps anyone, then it was all worth it. Although in my real life my family and friends know what I have been through, online there are still friends on my list that aren't aware of what I have been through. Perhaps now they will.
In closing ...
I also like to mention a place in Second Life where I attended a meeting, at the American Cancer Society's Hope Haven Survivors & Caregivers Support Group in Second Life.
http://maps.secondlife.com/secondlife/American%20Cancer%20Society/37/148/23
The lead person at Hope Haven is Sandie Slate (sandie.loxingly). They try to get together every other Sunday if possible. The meeting starts at 12:30 pm SL time.They have Survivor Moderators as well as Caregiver Moderators. There are others I met briefly, the most amazing courageous people I ever met. I was grateful to them for hearing me out. I was overwhelmed with emotions. It was several months after my treatments and I walked in and felt the immediate feeling of belonging. I'm also grateful that I listened to others and what was happening in their lives and how they were coping. I didn't feel alone.
When you have cancer, I understand people sympathize and give you hugs and so on. But there is nothing like someone else with the feelings associated with cancer. Sometimes you want to talk about it, sometimes you don't, sometimes you just want to listen. It's all okay. We are with friends who have either been there or still there. For news and updates, click on the terminal that is placed at the entrance that says' American Cancer Society ' Survivor and Caregivers Info Net.' It's on the ground. Once you click on it, a notecard will appear. It will explain everything you need to know. There is another one at the side of the building with the names and how to contact the Survivor Moderators and the Lead Person as well as the Caregiver Moderators. Cancer is Cancer no matter who you are and where your from. Everyone is welcome. I read a poster that was on the wall in the other building that made perfect sense to me. “Hope .. is not a wish it's a belief." So true (smile).
Thank you (smile)
Alysabelle Resident
