Great news! I have finally decided I may not be doing this website justice. Not keeping it up to date doesn't help you newbies. So I have put out the word that having others look over each page and edit, add, make sure all links work and are current would be great!
So already I have members from the amazing facebook head and neck schwannoma site offer to help!!!
This will no longer be my website,, it will be OUR website. I'm pretty excited to get this going.
Ok, so I am reading my old posts and it was over a year ago that I last posted. Well.. time flies.
I still can't believe it has been a year but I guess the computer doesn't lie. :)
Over this past year all has been good. Life is good to me with a very supportive and loving husband. Even tho I do not wear a wedding ring because I still feel like he is my eternal boyfriend,, but yes,, he is also my husband.
This past week, THE TRAGICALLY HIP played their last concert. It was an emotional concert. Gord Downie has been diagnosed with terminal brain cancer so he and his band decided to do one last tour. He broke down during the concert and cried out loud... in anger, in hate, in despair, the fact this was his last concert and what lays ahead? The what if's....
I had been there. When first diagnosed, I felt all that. I get it. Mine ended up being the less of the worst and here I am today, but it all starts the same way with the same emotions. My heart goes out to Gord Downie and his family and friends.
So, over this past year, what has happened? I'm aging. Just turned 50. Past menopause YEAH!!!! :) Getting clear lines across certain parts of my face.. YUCK! Age spots on my hands and arms... What the Heck! lol But I was so happy to be turning 50. When most women abhor it, I enveloped it. Why? Because I was turning 50 when many women who have walked this earth had not had the opportunity to do.
Lately over the past couple of weeks, I have noticed a change in my memory. I am now calling my cat the name of my old cat I had 15 yrs ago. I do not recognize people that I should. I cannot remember names of people I should easily remember. It is troubling to me. Naz just says it makes me interesting lol
If you are new to reading this and finding this site, please join the facebook vagal schwannoma site where you will find over 300 plus more people who have been diagnosed with a vagal schwannoma. It is a closed group so no need to worry about others seeing your posts.
Below are a few pictures from the weekend during the last Tragically Hip Concert. I have one thing to say,,"Some may call me crazy, but I call it, me being me"...
Life is a gift so enjoy it!
I have not been on for a while. As far as my health and schwammy, nothing has changed much. I am due for an MRI (my last one was over 1 1/2 yrs ago) but I cancelled my last appt not wanting to travel so far. Now I have changed my mind and I am back on the MRI list in Ottawa :)
I want to say that I never knew how much this site helps people. I know I get weekly emails, but my latest reader has made me feel so much like this has all been worth every letter I have written in this website. Every emotion I have left on these pages.
Speaking of stuff on these pages. My brain is a wonderful thing in that,, I have limited memory for certain things. Such as that last post. I had absolutely NO recollection of writing that post. None at all. I read it for the first time just now. I obviously wrote it because no one else knows how I feel inside but me. No one else knows these stories. I'm almost afraid to go back and read past posts... it would be like reading a book for the first time.
Anyway, I am writing here to thank those people who thank me.
We are all brave together. Unless you are hit with the words "You have a brain tumour"... you will never know the extent of tunnel vision and echoey talking coming to your ears. Everything becomes a blurr... your life insurance, house, kids, husband.... life... all come to your thoughts at once,, not knowing what will come of everyone.
My heart goes out to those with malignant tumours. Where their journey is unknown. Big hugs to you!
I am sharing with you a song... it is about being grateful for all we have. Sometimes I will bitch about Bell Canada, or the many calls I have to make after work, or slow drivers.. ect.. but in reality, some people can't even have a cell phone, some people can't even afford a car and some don't have a job that they even can complain about. Here is the song, close your eyes and listen,,, then open them to a new day and a new you! xo
This has absolutely nothing to do with my site here... but I have to share because something tonight hit me. A song, by Miranda Lambert. "Get Over You".. it is a song Blake Shelton wrote about his brother who passed away. His brother was killed in a tragic car accident.
My brother as well passed away at the age of 9. I was about 5 yrs old so didn't know what was going on. I was sheltered from everything. All I know is my brother no longer was around or talked about but I did not know why.
It was not until I was 12 yrs old and at a funeral for my grandfather that I saw my brothers grave. It was a very sad, very slap in the face, very humbling experience. I fell to my knees. A moment that I will never get over or forget.
The song, "Get over you" is so emotional for me... as well as a certain line in the song.."It really sinks in, you know, when I see it in stone"... that is the line that gets me everytime. As I did not realize my brother Robbie had passed away until that moment.
I had to share because some things need to let go.... xo
Wow, it's been a while since I have posted! That is a good thing obviously because I usually post when I have junk going on and need to vent ect.
Not this time, this time it is only about ... nothing.
My health has been very good in fact! I seriously have had no real issues from my schwammie for a while now.
Can't say this for many other vagal schwannoma tumour sufferers. They are facing daily head/neck pain, swallowing difficulties, palsey of some facial muscles, headaches, ect....
There have been the odd lucky few and for that I am very thankful! But for a general rule, all I can say is I am so glad I did not choose surgery. Regardless of the outcome from the radiation, my quality of life is amazing. What I mean by that is my post radiation symptoms are so few. I have had some issues over the past few years, and when they occur, I vent. But I feel very lucky to be where I am today.
Unlike surgery, I am still stuck with the tumour in me. That was the hardest thing to accept. As I have stated and most of us tumour people say is... I WANT THIS THING OUT OF ME! Nothing would have pleased me more. I can still feel it at times causing resistance to surround areas. Especially when I get a cold, the area swells around it so there is pressure. But, that is all I am contending with so I can handle that much.
I am glad to get over January because to think of it, it was an awful month! Seemed like there were so many people I knew passing away or someone I knew had a close one pass away. It was really getting me down as nothing was seeming bright.
Now it is March and I had already forgot about the first few weeks of this year.
Speaking of forgetting things... that is something I have to deal with on a daily basis! My memory. Doesn't get any better. I am dealing with two reasons why this could be such a problem. Firstly, radiation on the brain can cause memory issues and early onset of Alzheimers. Yeah yeah,, I'm actually thinking of getting checked. The second thing would be menopause... that causes memory issues. So I am double whammed for memory problems.
This past weekend we went to a St. Pattys euchre party. Was a great time! I'll post our pic as we decked out in green. After all, I am a true blue Irish lass! :)
That is my question of the day to myself. Would I be ready to die??? I mostly would say yes... but then there is a selfish part of me that says no.
That part is the one that enjoys seeing our children every day and sharing in their lives everyday. I would miss that.
I would miss see my beautiful husbands smile.
I would miss winter,, yup, can't believe I said that because I loath winter.. but when it suddenly would be taken from me... I know I would miss it.
I would miss seeing my future grandchildren and playing with them.
I would miss my friends and customers. I would miss my pets.
I know I would not be around to miss any of these, but it is the unknown that I would miss.
Therefore, I am glad that I am alive to enjoy it all. To know there is no near future expire date on me that I know of anyway. We all have an expiry date and I actually had one 5 yrs ago when I was first diagnosed. I faced all of this and I felt ready because I did not have a choice at the time.
Now, I have that choice and if faced with it,, I am not ready to die.
I still have too much to do in my life. Too much sharing to be had. Too many laughs to be laughed. Too many hugs to be hugged.
I want to tell anyone facing death, that I totally admire them and learn from them. Learn to appreciate love and life on a daily basis.
Been a while since I last blogged. Happens that way :)
My memory sucks. Just gotta say it. So embarrassing to be out and have people talking to me that I have no idea what they are talking about! I can only pretend so long and then I have to say... "sorry, but I don't remember you, but if you give me some details it will come to me" Wow, talk about making a client of mine feel special... :P
Then there's my throat and voice. Been having troubles. Maybe just temporary but am definitely looking forward to my dr. appt this coming Monday! Will post more details next week when i get them. :)
Hi, My name is Rhonda Edwards. I was diagnosed with an in-operable brain tumour in 2009. I will blog my journey so follow along and enjoy, share and learn.
Needed some humour here!