Pain with a cancer diagnosis is just expected and accepted. After death itself, the pain was the main fear I felt after my diagnosis. Due to the pain, I was experiencing at the time of my diagnosis, I could only see a future of me laid out on the sofa or in bed, high on morphine and other drugs to relieve my discomfort. In the early days, before I began chemotherapy, doctors prescribed various medications to help. They were extremely sympathetic, and I could literally have anything I wanted.
And I did!
Once I began chemotherapy, I found it relieved symptoms such as pain but does, of course, come with a whole host of its own side effects, some of which are extremely debilitating. However, it helped me enough to stop taking pain relief completely.
Pain, or lack of it, has probably been the biggest surprise to me since I found out I had cancer. Cholangiocarcinoma, as you may already know, is usually only diagnosed at an advanced stage. It is aggressive and “beastly” …a description I have read many times from those living with or caring for someone with it. And unfortunately, many people, really are in extreme pain, and it is so hard to hear of the suffering they go through.
When I heard that the focus of my diagnosis was to be “quality of life”, I mentally prepared myself for a journey of exactly that, pain, and suffering. For someone who is used to dashing around and generally being active, I found this a bitter pill to swallow….and the only one I had not asked for!
But honestly, as I approach my 1-year cancerversary, this has not been my overall experience. In fact, quite the opposite. Apart from a couple of months after my chemotherapy ended where I experienced a lot of pain and generally felt defeated, I have been well and “healthy”. According to those bloody statistics, I should probably be gone, so that’s another reason I refuse to entertain any of that nonsense. Sod that! None of us is a statistic. I have lost count of the times I have said to my oncologist, GP, or someone I am speaking to, that I don’t feel like I have cancer. I don’t know what I was expecting but it certainly wasn’t this.
Maybe it is because I have made many positive lifestyle changes to support my health and mental wellbeing, but one thing is for sure, I am so utterly thankful for this that I cannot even begin to find the words to accurately convey how this makes me feel.
Despite being diagnosed with this aggressive cancer, that takes people quickly and painfully, I still refuse to be another statistic. But I am only able to feel like this because I am not in pain. For me personally, when I have had periods of physical pain, I am unable to live the life that I want, unable to do the activities that bring me joy and then I get down, and my determination to beat this, does not just waver, it plummets spectacularly.
My aim, like anyone, is to “beat” cancer, or for me personally, to heal my body from cancer and get well again. However, I am certainly not deluded to the fact that cholangiocarcinoma could well be the demise of my life here. I just choose not to focus on that, no matter what I am told. I will never focus on “dying” from this. If, or when, that time comes, I will accept it. All I can do is to hope it is as quick and as painless as is possible, not only for me but for my children, family, and friends, as it is never easy to watch someone you love, suffer.
Let us keep this positive though. Right now, as I sit here, tapping away, I am feeling good. Like, really well. Not in any pain. I do credit my new treatment, Pemigatinib for most of this. Although, I have some negative side effects to contend with; hair loss, fatigue and, it would appear, the beginning of my nail beds lifting, I feel really good on it. It’s the weekend and the sun well and truly has his – or her- hat on, and there is not one cloud in sight. How blessed I am to feel like I do now?!
Oh, how I have gone off the point of this post. I had intended this to be about what I have found helpful when I have felt pain. But, as is just typical of me, I have waffled on and if I continued with this, it would be one lonnnnnng post. So, I will put together all this information in my next post – and I will try to get it completed tomorrow. Infrared sauna therapy and meditation are two methods I have found really helpful though, so I will go into these and a couple of others in the next post.
I sincerely hope that you are not in pain, or if you are, it is managed well, either through the right medication, treatments, or both.
Much love and strength,