Now I realise that this image could have many meanings when it comes down to it, but it fits what I have been trying to put into words for a few days. You see when it comes to people there are a certain group out there that I would like to refer to as 'the half listeners' that drive me absolutely nuts! So this shovel is for them.....
I understand that all people show concern for a loved one, friend, frienemy, acquaintance, family member, etc differently. Some people have no idea how to deal so they distance themselves. There are others that you suddenly hear from that you haven't been in contact with for years. Then of course there are the people that have always been there for you and always will be no matter what is happening in their life or yours.
Those that I wish to hit with the shovel can fall into any of these categories. It isn't that they are being fake, or at least I hope that isn't the case. What frustrates me the most about the ones I have in my life right now are that they are people very close to me that like to talk. Some, I would even say, are gossips. That doesn't make me love/like/care for them any less. What drives me so mad about this is that they are telling people things about me that aren't complete; they are spreading half truths which to me might as well be a lie!
If I tell you that I am going to have 4 injections of ipi each one being 3 weeks apart how hard is that to understand? How many times do you have to keep asking me about when I am done? Can you not count? Is what is happening to me not important enough for you to pay attention to the answers I give you after you ask the questions?
I know that I have to repeat information about my life to many people over and over again. The hardest part for most to wrap their heads around is what the treatments do and how it is that the drugs work on Melanoma. That doesn't mean that if you are a person that I talk to on a regular basis that I want to answer the same 5 questions all the time!
No surgery is not an option, and may never be! I am not planning on going back to work anytime soon, it isn't something high on my priority list to think about right now so stop asking! Yes I am done my current treatment, this doesn't mean I am done all treatments it is just a break until we have a scan and see what has happened! They haven't told me how much time I have, all I know is I have time so I want to use it the best I can! I had a steal rod put in my right femur, this doesn't make me a cripple it makes me bionic!!
The thing that annoys me the most is if they have to ask these same questions over and over again then what have they told the people they talk to? How many people that are their friends think I am on deaths door with no other treatment options? That I am incapacitated with 2 young children because I had to have surgery on my leg and that now that I am alone for a few days since my mother has already flown to NB I will be helpless without her? How many of these people are then seeing other people I know and then asking them if it is true? Oh wait I know this happens because I get phone calls, emails, text messages, facebook messages asking me if these things are true so I do know it is happening. And guess what? I want it to stop!!!
These half listeners are going to make me stop telling them things just to save my own sanity!! It also makes me wonder if they have always been like this or if it just their way of coping with all of this or if for some it is just an age thing? All I know for sure is that it is infuriating to have people ask me questions about my health and well being and then not care to listen to the answers!! How bloody hard is it to actively listen to what you are being told?
It is obviously really hard for some people or I wouldn't be wanting to hit and bury them with my shovel!! I know what I am telling them is important and the facts as I know them. I know that is what they have asked about and that is why I am telling them the information. I know that a lot of it is over the common persons head as it is over my head until I look it up or ask follow up questions. I also know without a doubt that if the half listeners don't soon get their shit together and actually LISTEN to what they are being told then I am going to stop answering their questions because it is just futile.
I may not be responsible for you to understand what I have said but I do deserve the respect of you to listen to the answers you have asked for!!! If you can understand that then maybe you best think before you ask another question for the millionth time and still don't have the courtesy to listen to the answer! I want for it to be known that I am going to start asking if you listened the first 50 times before I decided whether or not you deserve to hear it again, because this is getting ridiculous. Not to mention a waste of my time and breath!!
Hmmm.... the thing with drug companies is that they are a double edged sword. Without them I wouldn't have the drugs that I need to take to beat this horrible thing that I have inside me (I would say disease or cancer, but they are other things I want to hit with a shovel and will save for another post another day). They are the place where people work to create medicine to save lives. They are also the place where I think greed is, well I will let you draw your own conclusions.
So far in my Melanoma Journey I have taken 2 cancer drugs. Neither of these drugs are free really, as Alberta is not a province that picks up the tab for them like some others in Canada now do. I was lucky that my private insurance covered 85% of the first drug and that the remainder of the bill was eaten up by the drug company itself. For 3 boxes of the pills the total cost on the bill was just over $9000.
Those wonderful little pills gave me more then just medicine. They gave me hope. They may have came with side effects that made me itch to the high heaven, caused hair loss to the point that I shaved my head so that I didn't have to deal with the amount that was falling out on a daily basis, but like a said they also gave me hope. Zelboraf was my first line treatment, my life line and when all else fails it is something I can come back to for that hope again.
While taking them I never thought of the cost of them. Not once did it cross my mind how I would pay for them if my insurance didn't eat up as much as it did of the big price tag. I was just thankful that they kept arriving at my door and that I was able to take them. That they were giving me time that I might not otherwise have.
When this medication ran it's course and I had to start a different drug that I started to see the dollar signs and do the math. You see this second treatment I get to take as a 90min infusion every 3 weeks for 4 infusions. I did not have to pay for this drug either as a qualified for compassionate use. Thankfully the drug companies see that this is a drug that is necessary for possibly extending the lives of the people that need it, so they pick up the full amount. You my want to sit down before I tell you what 90ml of this wonderful little treat is.
Are you ready? I am not sure that you are. I was told by one of the persons in charge of the Medical DayCare Unit as the TBCC where I receive my infusions that it is one of, if not the most, expensive drug that the hospital has. So here it is 90ml = $35,000. I kid you not! For what each infusion costs I could be buying a high end car. If is saved up the cost of each infusion I could have half of a townhouse paid off. For the cost of one infusion I could cross off the most important item off of my Bucket List without a worry.
So here is where the drug companies gain their spot on My Shovel List. Now don't get me wrong I am very thankful that they cover the cost of the drugs that I have had to take over these last 7 1/2 months. But think of what life must be like for those that need drugs like the ones I have taken and the cost is not covered? Why does a drug need to cost $35,000 for 90ml? Why do 135 tablets have to cost over $9000?
In North America there is a person diagnosed with Melanoma every 65mins, approximately. Each of us diagnosed has the chance of getting to the point of needing these drugs and I sadly don't think that the drug companies are going to continue to be as generous with all the possible medications that a stage IV patient may need. How can anyone that goes into a profession to help save lives put such a huge price tag on a life? How can they do that with good conscience? How can making money be more important then saving a life? This is why I want to hit them with a shovel and bury them in my backyard!!
So drug companies I have an idea that can save you from being buried in my backyard, and it isn't even asking you to make the drugs for free. Tanning Salons in the US are a 5 billion dollar a year industry. It is a know fact that they are part of the reason why Melanoma is on the rise with youth, especially with females 15-30.
How about this? How about the governments get their act together and tell the salon companies, and the bed and the light manufactures that they have to pay the drug companies that make the drugs that we need to extend our lives. Doesn't that make sense to you? I mean tobacco companies have to do something like that don't they? So why not make tanning do the same? Make them foot the bill for the epidemic that they are feeding? Drug companies should be lobbying the governments to make this happen and they shouldn't be wasting a minute in doing so!
In the spring of 2008 I had my first brush with melanoma. A brush that left me with a battle scar on my left collar bone. A brush that taught me to be sun smarter then I was. A brush that changed my life forever.....
I guess this brush is what began my wanting of this outlet that I didn't think I could actually put on there, keys to fingers, words to screen, and strangers reading. Well at least not until I started reading Marian Keyes latest novel of the Walsh Family sisters, The Mystery of Mercy Close. In this book she is writing about Helen and her adventures as a struggling PI in recession hit Ireland. Helen is the youngest Walsh and probably the quirkiest of the 5 Walsh Girls, not always my favourite character in the previous books but that changed when I read this on the back cover. "I employ this thing called the Shovel List." "A shovel ......?" "No. A Shovel List. It's more of a conceptual thing. It's a list of all the people and things I hate so much that I want to hit them in the face with a shovel."
From this perfect description the only thing I add is then burying said person or thing in the backyard. I take this idea from one of my oldest friends, Cassie. You see she and her husband my have only been married for the last 10 years, but they have been a couple since 1995. They are that couple that has come to the realisation that no relationship is perfect and that agreeing to disagree saves marriages. However, that doesn't stop her from occasionally wanting to 'bury him in the backyard' when he gets to that point of over bearing assholeness that most men can.
I will admit that I may have needed this Shovel List before I met Melanoma. I am a person of opinions, some that get me in trouble. I am that person that just can't keep their mouth shut, which also gets me in trouble. The one thing I can say for sure though is that Melanoma has made me even more of that person with an opinion that just can't keep their mouth shut. So I am hoping that this Shovel List will keep me out of trouble; well at least a little bit any way.
This is my outlet for dealing with Stage IV Metastatic Melanoma. This is My Shovel List. This is my Life. I hope that it helps everyone reading just as much as it helps me to get out there those things that life and this horrible disease make me want to hit with a shovel and bury them in the backyard!
