Today I rang the bell on the radiation floor. Without question, it was a great moment – much better than ringing the bell in the chemo suite. The difference is that this time really is the end of treatment. My daughter was away and not able to attend but my grandchildren asked to come with us. It makes it much more of an event when there are a few more people. The radiation therapists who have worked with me all came down, took photos for us and cheered along with everyone on the floor.
Ringing the bell and finishing at radiation is bittersweet. For sure I am happy that treatment is done but attending radiation every day brought with it a sense of purpose, belonging and a whole new community of people. The atmosphere in the waiting room of the radiation floor is one of camaderie, a “we’re all in this together” kind of feeling. Because you are there with the same patients everyday (and those that accompany them), you get to know quite a bit about them. This means that there is lots of conversation and it is conversation that is pertinent to where you are at the moment. We all speak the same language, so to say. You’re with people who “get it”. It is almost like you gained a whole new family, even if the group changes regularly as people move on.
One of the confusing feelings about being finished with my treatments is that it requires finding out what life is like now without the hospital schedule. For eighteen months now, we have been at the cancer centre often. For the first year it was at least two to three times a month. For the next four months it was at least ten to twelve times a month. Now for the last two months, it has been every day. I’ve had this conversation with many patients, doctors and nurses. We talked about the fact that this became our new normal. Our lives revolved around the hospital and all the follow up appointments at clinics and doctors’ offices. As my oncologist said, “it is time to find out what your new normal is”. There’s a piece of me at a loss as to what I do with my days.
I must quickly add that life is not normal yet. I still have many lingering side effects of chemo. My leg muscles and joints are very sore, achy and it makes walking very difficult. My appetite is almost completely back but not all foods taste the same as they once did. I don’t care for a lot of foods that I used to like a lot. I think I want them and after a bite or two, I just can’t eat any more. I am still very tired most of the time and find that I still nap during the day. Apparently the effects of chemo can take months or even up to a year to wear off. My radiation oncologist says that radiation is largely responsible for the fatigue. One of the interesting things about being finished with radiation is that you’re really not. He explained that the effects of radiation will continue for about two weeks and this may be the most painful time for side effects as it is the accumulation of them all. This means that my skin is burned and raw with sores and I have a lot of pain from soft tissue inflammation. He then told me that these side effects will begin to diminish within the next month or so and then I can no longer blame him for my aches, pains or fatigue.
The other day I was talking with a neighbour and he asked, “so are you in remission now?”. I have to say that I didn’t really know what the word remission means so I looked it up.
The term “remission” means that cancer treatment reduced or eliminated the symptoms and signs of cancer. Remission may last for months, years or the rest of your life. Some oncologists/health care providers who specialize in treating cancer consider cancer to be cured if people have no signs or symptoms of cancer for at least five years after finishing treatment.
It was most helpful to know that.
I will be starting a new drug this week that I will need to take for the next five years. It is related to the two medications that I took before my surgery and I had very unpleasant side effects so I am nervous about how this will go. We’ll see. There are also a couple of other medications I have to decide about as they too have side effects that can be scary. One of the women I was speaking with in the radiation waiting room talked about all the decisions to be made. Do I want to take this drug? Should it have this procedure? They are such important decisions and you so want to do the right thing but what exactly is that?
The other disconcerting thing about being finished is that regular contact with the whole team that has been treating you is gone. I had a conversation with a counsellor from the cancer centre and she was saying that this can be the most difficult thing. You see, in your head, you’re seeing the doctors, they are looking at your blood work regularly, checking in on all your symptoms and checking things out for you. Somehow it feels like you can lessen the constant worry because they are right there making sure for you. Now, my next appointment with the oncologist is six months away and that’s scary!
The last thing is that your head starts with “what if it comes back?”, “when will it come back”, “will I know if it comes back?”. I had this conversation with one of the therapists at the cancer centre. She said that of course in the beginning you think about this all the time but as time goes on, life begins to normalize and you think of it less and less. As she said, you also have to have it in your head that for some people it never comes back.
I am going to spend some (no, lots of) time clearing my head by tapping into my shine. It is a much better scenario that my head is filled with thoughts of shine filling my body than cancer being in my body. Shine radiating throughout my body in whatever colour I feel that day! Makes me smile just thinking about it!
