Yesterday was Boxing Day and with nothing on the agenda, gave me too much time to think. I needed the day to recover from the activities of a large family Christmas Party at the new home of my eldest son and his family. Being busy would be a welcome distraction, but I am not well enough to have much on my agenda anyway.
The isolation that having cancer renders one is a lonely road to travel. Having to make a difficult decision is so overwhelming at times. Even though I am surrounded by people who love me, there is still a feeling of being disconnected or separated from everything going on around me.
There are not many who understand the fear I have of being totally deaf. Growing up profoundly deaf (about 20% hearing)I have always had to struggle to be accepted. I lip read very well and manage to be able to join in the 'hearing' world especially when I can control the auditory environment, ie is how much noise it going on. For example a dinner party of 6-8 is ideal and large party where everyone is talking at once, bamboozles me. I have also been isolated by people's perception of me. Maybe they think I am rude because I didn't respond whereas I probably didn't hear them. Maybe they think that because I heard but didn't understand them therefore I must have a mental disability. I had to fight to be accepted into schools and sports, often becoming twice as good as the average just to be accepted by them. And I could go on.
Now with the Andenoid Cystic Cancer in my nose and sinuses requiring radiation treatment which is so near my ears that it could very likely cause some permanent hearing loss. The thought of the repercussions is affecting me very strongly. I feel so alone. No one else can begin to make the decision for me and not many will understand my fears or even try to. Already I have been brushed off by people who think "So what, just get a cochlear if it happens." I already have one and I know that a cochlear will help me hear sounds, but it doesn't/hasn't helped me to understand the sounds that I hear! It will be better than nothing, but nowhere near as good as the little that I already have.
Again and again I am trying to draw comfort from the Bible 'I am with you always'. Matt 28:20 is one bible verse I rely on... actually there are many others too!. But this one when I feel all alone even when in a crowd.
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The isolation that having cancer renders one is a lonely road to travel. Having to make a difficult decision is so overwhelming at times. Even though I am surrounded by people who love me, there is still a feeling of being disconnected or separated from everything going on around me.
There are not many who understand the fear I have of being totally deaf. Growing up profoundly deaf (about 20% hearing)I have always had to struggle to be accepted. I lip read very well and manage to be able to join in the 'hearing' world especially when I can control the auditory environment, ie is how much noise it going on. For example a dinner party of 6-8 is ideal and large party where everyone is talking at once, bamboozles me. I have also been isolated by people's perception of me. Maybe they think I am rude because I didn't respond whereas I probably didn't hear them. Maybe they think that because I heard but didn't understand them therefore I must have a mental disability. I had to fight to be accepted into schools and sports, often becoming twice as good as the average just to be accepted by them. And I could go on.
Now with the Andenoid Cystic Cancer in my nose and sinuses requiring radiation treatment which is so near my ears that it could very likely cause some permanent hearing loss. The thought of the repercussions is affecting me very strongly. I feel so alone. No one else can begin to make the decision for me and not many will understand my fears or even try to. Already I have been brushed off by people who think "So what, just get a cochlear if it happens." I already have one and I know that a cochlear will help me hear sounds, but it doesn't/hasn't helped me to understand the sounds that I hear! It will be better than nothing, but nowhere near as good as the little that I already have.
Again and again I am trying to draw comfort from the Bible 'I am with you always'. Matt 28:20 is one bible verse I rely on... actually there are many others too!. But this one when I feel all alone even when in a crowd.
Only you can make that decision to go ahead some people need to take a step back and think-truly I understand where you are coming from.I hope it is also helping you writing/typing about ..you are so true when you say the Isolation that having cancer renders one.I felt like an alien..All the best to you and your family with your decisions.cheers Vickie
ReplyDeleteWe all cope differently. Some are surprised that I have been so open. Some are annoyed that I write personal things on what used to be just a crafting site and many are very encouraging. I think of this blog as an extension of me, we are both still evolving and I write of my life's journey with it's bumpy roads and getting side tracked too! It is what you make of the trip that makes life interesting. I can hide away or I can face forward. Now that's not to say that I don't want to bur my face in my pillow or my husband's arms sometimes. but I can't stay there for too long. Thank you for your support, Vickie
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