Early on in the process of trying to find support online from others with Trigeminal Neuralgia, I found out that chronic pain sufferers use the word HOPE as an acronym, Hold On, Pain Ends.
Really? How?
How is this pain going to end? How can this pain end when there is no known cure or long term treatment, yet? When healthcare professionals question our symptoms? When we are treated as drug seekers just because we go from one doctor to the next to try and get relief? When trying to find help requires time and finances that we don't have anymore?
How am I supposed to be positive in the way I think about how my life has changed when those changes have forced me to give up on dreams and aspirations for my career, friendships and relationships? How can I hold onto HOPE when I keep on being shown the door as yet another surgeon or specialist says, ' sorry, there's nothing else I can do?'
Every time I have asked myself these questions in the last week, I think about something I heard. A short while ago, I watched an episode of "Grey's Anatomy" in which one of the characters has been diagnosed with a supposed inoperable brain tumor. Now I know that the medicine on the show is not exactly science and don't watch it for that, but rather as a show I really love. What hit home in the episode was a monologue by that character after being told that a colleague felt that she could successfully remove the tumor: "Can you name the single worst most malignant symptom of terminal cancer? It's hope. It's recurrent, and it keeps creeping back in no matter how many times it gets ripped apart … And every time the hope goes, it takes chunks of you with it, until you can only find comfort in the one thing that you know you can count on: that this thing is going to kill you."
Please DO NOT think that I am equating Trigeminal Neuralgia to terminal cancer. The point I am trying to make is that HOPE, for me, is like that. It's the worst possible thing I could have right now.
Do you know why?
I have spent thousands of Rands seeing specialists, taking medication, having tests, having two surgicial procedures in the past year. With each Rand spent, with each doctors visit, with each test or procedure or new medication prescribed....do you know what came with that? Yes, HOPE. Now, after both surgical procedures have failed to relieve my symptoms, even for a single day, I can tell you that I do not have HOPE. I cannot Hold On until this Pain Ends. If I did, I would probably allow myself to sink into a serious state of depression that would allow me to reach the point of submission to my pain and ignore my guilt about wanting to end it all. If I continue to hold on to the HOPE that the post-op visit to the surgeon tomorrow will bring me anything more than a " well, I told you there was a chance it wouldn't work" coming from across the table...then I am an idiot. I would be an idiot to think that being HOPEful that this pain will end is going to be around the corner.
So now what? How can I get up every day and go about my life? Well, I don't know. I don't know how I get up and how I will go back to work next week. I don't know how I will find the strength to make it through the next bad attack. What I do know is, I'm still here. Even if the rest of the world (i.e. my friends/acquaintances/colleagues) has become tired of me sharing my story, of raising awareness, of 'complaining' about my pain....my family is still here. We have adjusted to a different way of living. We are pushing through the difficult times and emotions this causes for our daughters and for our marriage. I'm still here. I don't know how, but I am.
One day, I know, I will again find the courage to fight and look for another option in my treatment. Today though, that is not going to happen. I need time to adjust to this new level of pain. I need time to deal with the fact that my HOPES have been shattered yet again.
So with this I say, give me time. This Is Momentarily Excruciating, but those moments are coming in thick and fast right now. So give me TIME to deal with it. I may not respond to messages or calls, because it is hard for me to respond to a "how are you" with an " I'm fine/ok". I just need TIME.
There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License.
Subscribe in a reader
I have been following this website for more than 2 years now, admin kindly post and share this to give other brain tumor patients hope that they can get a cure.
ReplyDeleteThree years ago I was diagnosed with GBM after a CAT scan. I went through neurosurgery, radiation, and 14 months of chemo treatments but the symptoms all remained and even doubled, the constant thundering headache, seizures was twice than it was before, i could no longer think straight and i had constant mood swing and trouble speaking i was almost feeling at the gate of hell because these symptoms were unbearable. I am retired but very active spending my time to make the world a better place. I retired from a career in law and non-profit administration, and judging from how active i was this new life was not working and i was patiently waiting for when i will give up the ghost. My husband never accepted the fact that he will lose me to the cold hands of death which was what made him to seek other treatment options and that was how he came across "elixir" a herbal medicine treatment which i took for 12 weeks and it gave me a second chance in life, gave me a new life and totally cured me of my cancer. My neurologist had told me before then while i was at the hospital that i had less than 4 months with the rate at which the tumor was growing and expanding. I am happy today because i am completely free of cancer because i have ran several tests and diagnosis because i am still in shock on the efficacy of elixir. Never give up hope or rely only on chemo or other surgical treatments because herbs work too, i never believed until now that i have experienced it. You can contact doctor Rahul personally for advise, counselling and how to get elixir on drghandiherbs@gmail.com I am grateful for every day that I am still alive and well.