Wow, after I finally publishing that last post about living with tumours ("Sometimes everything is not okay.."), Huffington Post published an interesting article called "Why You Should Stop Calling Thyroid Cancer 'Good Cancer'". After reading it I realised how this is similar for many people with paraganglioma.
Apparently thyroid cancer is nearly 100% curable. While paraganglioma have a much lower cure rate (malignant paraganglioma and recurrent paraganglioma are incurable), there are many similarities between the two in how they are viewed as "Good Cancers".
The Huffington Post article says that judging cancers based on their cure rate trivialises the issues faced by people who live with them. It is the same when people look at the 'survival' rate. As a member of an international support group for paraganglioma and pheochromocytoma (paras in the adrenals) I can testify to that. We have many people who are living with paraganglioma and dealing with all the associated costs. These "costs" are not just financial, they are also mental and physical.
Most people with genetic mutations and paraganglioma have to go to specialist centres for scans and blood tests between 1 and 4 times a year. For those who live away from the big centres, the cost of accommodation and travel adds to any medical bills their insurance won't cover. Add to this the anxiety about being away from home, the travel, and the disruption to routine. For many the travel can increase any pain or symptoms caused by the tumours. For all, there is the worry about results from scans and blood tests; that flip of a coin that lets you know if you can forget about your tumours for a while, or if you have to start treatments or go in for surgery, again.
As with the people discussed in the Huffington Post article, people who survive paraganglioma and have a genetic mutation will live with the worry of having the disease for the rest of their lives. Recurrence is common when there is a mutation involved. For some of the mutations, metastases are also common. These people are often told how lucky they are, how they should "buy a lottery ticket" as they have obviously shown they are a winner by having such a rare disease, that they should be thankful it is not a 'real' cancer. Really? I wonder if they would say the same thing if it was them or their child or spouse who was dealing with this.
Here is the article:
Why You Should Stop Calling Thyroid Cancer 'Good Cancer'
Sunday, February 8, 2015
Saturday, February 7, 2015
Sometimes everything is not ok.....
I will start this with an apology. This is not very politically correct. I am not going to cover up what I want to say with things you want to hear. Sorry, but if you don't want to hear this, please turn away now. If you want to hear that everything is going to be okay, that I am happy with my lot, you are in the wrong place.
I have a degenerative disease. It is made up of numerous slow growing cancers, called paraganglioma. Normally paraganglioma are a simple benign disease. Add to them the SDHB genetic mutation and you have a deadly cocktail. We have all seen the pictures of people dying from cancer. That’s me… except in slo-mo! After years of surgery and radiation the doctors are now telling me there is nothing they can do, unless….
People tell me how lucky I am to have a slow growing cancer. They even question if it is a ‘real’ cancer. Yes, it is eating away at my body. Yes I am going to die from it. “Unless you get hit by a bus beforehand”, says another well meaning friend. "I mean none of us really knows when we are going to die. You are lucky as you have had a warning. And you could get hit by a bus before hand, anyway.”
Yes, how lucky am I. I know I am going to die a long, slow agonising death, which will probably involve me suffocating as a result of tumours eating away at my lungs. Yay! You should be so lucky. Perhaps I should step in front of a bus. It is quick and painless. But then, there is the guilt that stops me. Someone has to clean up that mess. I couldn't possibly do that to my family or the street sweeper. Also, the insurance won't pay-out for that. I have to die a long, slow, lingering death to get a cent.
I know I am alive. And I know that, regardless of how bad it gets, I will always be able to find someone who is worse off. But please don't tell me I am lucky. It is really hard to start each day with a smile and be grateful when I know what is ahead.
That “unless” from the doctors that I mentioned before. That ‘last straw’ that I cling to is called the “Lazarus effect”. I was told that there is a treatment that may work for me, but it is a ‘last minute’ sort of reprieve. IF my tumours start to grow quickly, “they” might be able to use a really cool treatment called Lutate. It is where they inject radiation into your veins and IF your tumours are big enough, and IF they are growing fast enough they take it up and are killed, at least until the next ones grow. But… and here’s the but, they have to be fast growing and big for it to be successful. Hence the name, “The Lazarus effect’. You might remember from bible stories the story of Lazarus and how after he died, Jesus healed him and brought him back to life. Gives you an idea of how close they are cutting it.
I have a degenerative disease. It is made up of numerous slow growing cancers, called paraganglioma. Normally paraganglioma are a simple benign disease. Add to them the SDHB genetic mutation and you have a deadly cocktail. We have all seen the pictures of people dying from cancer. That’s me… except in slo-mo! After years of surgery and radiation the doctors are now telling me there is nothing they can do, unless….
People tell me how lucky I am to have a slow growing cancer. They even question if it is a ‘real’ cancer. Yes, it is eating away at my body. Yes I am going to die from it. “Unless you get hit by a bus beforehand”, says another well meaning friend. "I mean none of us really knows when we are going to die. You are lucky as you have had a warning. And you could get hit by a bus before hand, anyway.”
Yes, how lucky am I. I know I am going to die a long, slow agonising death, which will probably involve me suffocating as a result of tumours eating away at my lungs. Yay! You should be so lucky. Perhaps I should step in front of a bus. It is quick and painless. But then, there is the guilt that stops me. Someone has to clean up that mess. I couldn't possibly do that to my family or the street sweeper. Also, the insurance won't pay-out for that. I have to die a long, slow, lingering death to get a cent.
I know I am alive. And I know that, regardless of how bad it gets, I will always be able to find someone who is worse off. But please don't tell me I am lucky. It is really hard to start each day with a smile and be grateful when I know what is ahead.
That “unless” from the doctors that I mentioned before. That ‘last straw’ that I cling to is called the “Lazarus effect”. I was told that there is a treatment that may work for me, but it is a ‘last minute’ sort of reprieve. IF my tumours start to grow quickly, “they” might be able to use a really cool treatment called Lutate. It is where they inject radiation into your veins and IF your tumours are big enough, and IF they are growing fast enough they take it up and are killed, at least until the next ones grow. But… and here’s the but, they have to be fast growing and big for it to be successful. Hence the name, “The Lazarus effect’. You might remember from bible stories the story of Lazarus and how after he died, Jesus healed him and brought him back to life. Gives you an idea of how close they are cutting it.
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