Chemotherapy, Neuropathy, Disability and Me...everything you needed to know but there wasn't enough time to tell you.
A patient's journey through chronic pain, neuropathy, central pain sensitisation syndrome.
Before we begin…The Disclaimer….The information in this newsletter is purely for information purposes only and in no way is to be used as medical advice. I am not, nor am I holding myself out to be a medical professional in any way. This newsletter is purely from my own experience as a patient and a sufferer of chemotherapy induced neuropathy and chronic pain. Always seek advice from a qualified medical professional and do not delay in getting your symptoms checked by a qualified medical professional.
If you’re reading this, it’s because:
a) you’re about to undergo chemotherapy and the process of cancer diagnosis to chemotherapy is going so fast, that you don’t quite know what risks you will pay for taking chemotherapy, (and yes there are risks also for not taking chemotherapy). You’ll most likely sign a release form for the doctor/hospital before you take chemo but you’ll be too dazed from this huge catastrophe in your life that you’ll trust your doctor and hope for the best without fully understanding what you’re signing away, or
b) you’ve had or are having chemotherapy and are experiencing weird, awful pain in your body right now or weeks, months or years after you’ve had the chemotherapy (aka neuropathy) and none of the many doctors you’ve seen can give you any plan or cure, apart from pain killers in various forms, and at best they’re saying that you should be grateful that you’re still alive; or
c) you care about someone who’s going through a) or b).
I’m here to tell you that it doesn’t have to be this way. This newsletter is to give you the viewpoint of a patient who’s suffered through cancer diagnosis, surgery, chemo, radiation and hormone therapy and ended up with severe neuropathy. I am here to tell you that I have found ways to decrease the pain and I am taking back my life, one hopeful day after another.
I wish I had known six years ago what I am about to tell you. I would have asked a whole lot of questions and been better informed before I ended up living with neuropathy.
Let me start at the beginning.
In 2014, I was diagnosed with breast cancer, three tumours in the right breast and two in my lymph nodes. I had found a small indentation on my breast on a Saturday night two weeks before Christmas. There was no lump or bump. The skin was indented because the tumours were reaching up with their alien-like tentacles and pulling down the flesh to get into the skin. By December 22, I had been scanned, biopsied and operated on and told to come back in the early New Year to start chemotherapy and radiation. It all happened so fast. One day my life was a regular busy working mother of three and the next I’m staring up at a surgical lamp whilst the anaesthetist is getting ready to put me under.
Fast forward to February 2015 and I am in the oncologist’s office. He’s telling me that he got the results from my Oncotype DX test and although from a genetic analysis point of view, my chances of the cancer not coming back looked good, he strongly recommends chemotherapy. My husband and I go home. The mood is sombre. We are both in a daze. I think he’s freaking out because he’s unable to cook and how is he going to cope with small kids and a sick wife and I’m wondering am I going to survive and see my kids grow up. I really want to see my kids grow up.
I remember the oncologist making me sign a form, some type of legal release which means that if something goes horribly wrong, like death for example, my family won’t sue him or the hospital. Do you think anyone refuses to sign this thing? Not on your nelly! You are putting your whole life into the hands of this doctor and doctors are good, right? They are meant to be trustworthy pillars of society upon whom you can place your life, and for many of them, most of them, you can but there are also quite a number who you should not blindly trust. Anybody, even Albert Einstein, got it wrong from time to time. This is your life and once they pump the chemotherapeutic drugs into you, there’s no going back. Therapy has such a nice ring to it, doesn’t it? What they fail to tell you is that these therapeutic drugs are extremely powerful and whilst they can and have helped many cancer patients stay alive, they can also cause massively awful side-effects including life-long neuropathy and even death.
Don’t get me wrong. I’m not going to tell you not to take the chemotherapy. This newsletter isn’t saying I ate salad and cured my cancer. I just think that a patient should be trusted to have the information at hand to make choices over their own health. I was made to believe that I had no choice because if I didn’t take the chemotherapy, I wouldn’t see my kids grow up. Maybe that is true, I’ve met people whose loved ones refused chemotherapy and died and also people who refused chemotherapy and lived. I am only arguing for better, more transparent information before the cannula goes in. If you’re interested in the various ways people seek remission, a book I liked very much is “Radical Remission: Surviving Cancer Against all Odds” by Kelly A Turner PhD.
What this newsletter aims to do is to give you information from my own experiences that show that you do have choices and that when your health is on the line, if at all possible, be quick to find a second opinion. I wish I had. Maybe things would be different, had I been better informed, maybe not, but at the very least I would know that I had made my choices having taken all the risks into consideration. It would have been my choice alone for my body. I am now stuck with neuropathy and subsequently have had other oncologists tell me that they would not have treated me with chemotherapy and others who would have at least stopped treatment way sooner than happened in my case. I am advised that my condition is permanent. Is it? Perhaps, but I live in hope. There is still so much that science is discovering about the human body. It’s ironic that we can land rovers on Mars but we are still finding out about how exactly our bodies work. Look at the Nobel Prize for Medicine this year. How do nerve impulses work so that temperature and pressure can be perceived? Until recently, we didn’t have much of an idea! So, when a doctor gives you a diagnosis that doesn’t check out with all your symptoms, know that he doesn’t have all the answers. We’re still finding them out! I have made a lot of improvements to my health despite severe neuropathy. I should add that neuropathy, chronic pain and central sensitisation syndrome can all be caused by other factors, not just chemotherapy but that is how mine started.
The aim of my newsletter is to speak of my experience as a patient of neuropathic disease, of what I found worked for me and what didn’t. We’re all individuals. What works for one person may not necessarily work for another but maybe, hopefully, what I have learned may help you too.
It’s over six years since diagnosis and for the first three, I was mostly bed-ridden in excruciating pain, on opiate medications, all day, every day. The pain caused during chemotherapy was meant to go away after three weeks. When it did not go away, my oncologist could only say, “It is what it is” and continue to prescribe me opiates. Opiates that also have terrible side-effects if not carefully managed. It took me three years to find out how to manage them. I had no clue about the dangers of long-term opiate use. When I first asked how to reduce my intake because it was steadily going up because of tolerance, I was offered a place in palliative care…even my oncologist at the time wasn’t so comfortable with this option as I was in remission. I eventually found a clinic that helped me reduce the optiates and slowly but surely I took my first steps out of my sick bed and towards better health.
This is my journey, mapped out in a weekly newsletter. If I can help one person avoid what I went through to find real help and if my experience interests you, read on!
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