For people that live with a CA & the family members of someone with a CA, life is changed FOREVER. The below is a great explanation from his point of view of living with a CA. Somedays you just can't be positive:(
“I’ve got this stabbing pain in my side, its numb and tingly. What is wrong with me?” After some tests the specialists that have seen you diagnose you with having a knife sticking out of your body. It has missed the spleen, but is slightly inside your heart. They tell you that the condition is rare, and that surgical removal of the knife is too dangerous and the risks of more permanent damage are high if they attempt to remove it. They tell you they will monitor it and just to “wait and see”. There is no medication and there is nothing that they can do. They tell you to just continue with your life forget about the knife and pretend there is nothing wrong.
After hearing that: Would you not wonder what is wrong with your specialists? How can you forget about it and just pretend nothing is wrong?
Do you agree that your life would have altered dramatically because of this knife? Would you not feel anxious, stressed and depressed with this kind of news and treatment option?
It seems that when a doctor and/or specialist does not have any real treatment option for you; in fact they really don’t know how to deal with you, that you somehow should just move on and pretend nothing is wrong. I wonder….. How should a doctor respond to such a situation?
Should health care not respond more to the emotional needs that arise from such diagnoses? Everyone seems to be so concerned with mental health these days, yet when a serious patient has no treatment options – a major cause for future mental health issues – they tell you to just go away and pretend nothing is wrong! BUT … something is wrong – YOU HAVE A KNIFE STICKING OUT OF YOUR BODY!!
Off course you all know that I don’t have a knife sticking out of my body. This was an analogy for the vascular tumours in my head known as Cavernous Angiomas. There are no medications and no treatment other than surgical removal. Here in Canada they have not offered me any kind of treatment. They have told me that it is all in my head. I look fine on the outside so I should be okay, and should move on with my life. They don’t even believe me anymore when I say that my cavernous angiomas are causing me much pain and discomfort. They have the nerve to tell me that these vascular tumours don’t cause headaches?
Even the physical evidence that I have in the form of MRI films that show recent bleeding from my right occipital lobe lesion is ignored here by the radiologists. Their report says no new bleeds and no new lesions, while a top specialist in the US indicates a recent hemorrhage. They feel the bleeding lesion is asymptomatic. Do you think when a cut in your arm is bleeding, it is asymptomatic? Is bleeding not a symptom? Does it not indicate that there is damage to a blood vessel underneath the skin? Why then would they say that a bleeding cavernous angioma is asymptomatic?
I feel alone….very alone!!
I feel I am fighting an uphill battle against an established medical field that is too short sighted and dismisses a patient when there is no treatment. Is it my fault that they have not been able to figure out how to treat me properly?
Is it my fault I have a rare disease?
If I had cancer, they would offer surgery, chemotherapy and radiation treatments in the hope to cure me. They would even offer psychiatric support to deal with the diagnosis.
Did I ever get any of that? NO I didn’t…and why not? My family has additional stresses, because they know that what I suffer from, is something that I could have passed on to my children. Each of my 4 kids has a 50% chance to have inherited this disease.
Is there no psychiatric support available to help me and my family cope with that?
Why do I have to fight so much?
I am sick and tired, and I am so sick and tired of being sick and tired. I wish the medical field…”health care” became more caring.
I know this is a bit depressing to read, but I need your help in figuring out on how to make the health care professionals understand this issue better and how we can help to improve their standards of care.
I hope you can come with some brilliant ideas and perhaps I will feel less alone. Thank you.
Henk van der Wilt
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It is mind-boggling! Truly mind-boggling! I sometimes feel like I have to be my own doctor/therapist/research scientist and patient advocate all at once. And you know what else drives me crazy? It's that look the doctors give you when you tell them something they can't imagine is true. Yes, a CA can be very painful. It causes swelling when it bleeds and it presses on nerves. I hear you and I DO understand!ReplyDelete