Experience of Treatment – Personal Advocacy

experience

What are you willing to Experience?

When I started my journey no one told me what I should expect.  Sure the nurse practitioner sat me down and told me a bunch of symptoms, but no one actually shared with me what chemotherapy is actually like to experience.

Detached and not involved would be how I would describe my oncology team’s role in my treatment.  I do not feel like I was treated like a person while in treatment.  Cancer was bad, surgery was horrible, but the chemotherapy and my oncology team made the experience unimaginable.

No one ever asked me what I was willing to experience or lose.  No one suggested a care plan that would prepare me for what I was about to live through.  I had no advocate, no mentor, no guide.

What do I want to do?

I want to change that experience for others.  No one should have to go through what I experienced.  If you are about to start chemotherapy you should have all the tools you need to make an informed decision.  Right now as it stands I don’t believe that patients are receiving the knowledge they need to make the life changing decisions they are being asked to make.

I want to use my communication skills to help others understand their choices. There are more options to you that what you think.  You don’t have to do what the doctor tells you to.  The environment of a doctor’s office and their power differential interferes with your ability to critically think.  You have the choice to say no and research all of your options.  You need to speak to people who have been in the shoes you are wearing right now.  These doctors and nurses have no idea how horrible treatment can be.  You need to make a decision based on all the information, not a small slice of it.

I want people to realize that they are their doctor’s boss.  We need to overcome the power differential between doctor and patient.  They are working for us, not the other way around.  A doctor is not a deity, they do not know everything and they do make mistakes.  They are human.  The sooner you realize this the sooner you will realize that they are not the end all be all option for your cancer.  You must feel comfortable with your doctor, you have to feel like you can ask them questions, and you need to feel like they are listening to you.

Treatment

I have said this in another post and I will continue to say it.  Chemotherapy can cure your cancer, but it might not.  Radiation can treat your cancer, but it might not.  Surgery can remove your cancer, but it might not. These treatments are incredible tools in the crusade against cancer, but they are not the only ones.

What can I expect to feel?

Nausea

When someone tells you that you’re going to experience nausea, they are going to fail to adequately describe what it might be like.

Imagine you need to throw up every moment of every day while going through treatment. If your cycles cover five months, your going to be sick for six.  The nausea is all encompassing, permeating every facet of your existence.  I had moments where I was taking a shower and I would suddenly throw up, while I was eating I would throw up, while I was driving down the road, while I was being intimate with my woman, while I was sleeping, I would throw up.  Imagine having the flu every day, every single day.  Once you have done that you will have just a fraction of an understanding what it means to have nausea while going through chemo.

Neuropathy

When someone tells you that you’re going to experience neuropathy, they are going to fail to adequately describe what it might be like.

Have you ever had the sensation of your hand or foot falling asleep?  Perhaps you’ve had some numbness in your extremities?  Maybe you’ve had moments where it felt like someone was stabbing you with a knife?  Maybe you’ve even been touched with something super hot?  Imagine all of these sensations, imagine them alternating from one to next in a friendly game of musical chairs. This is neuropathy, it starts off light but it is noticeable.  I told my nurses and doctor about it, but they didn’t care. To them the side effect wasn’t that big of deal.

Would these sensations be that big of a deal to you?  Maybe not, but let me translate them to real life situations.  Do you enjoy kissing?  Being intimate with the people that you love, say your significant other?  Do you enjoy the sensation of being touched?  Maybe you like how warm water feels against your skin?  Would you say that you like to feel textures, say of food or clothing or… well anything at all.  If you like any of these experiences you need to be willing to let them go.  Sure the doctor may say that these are temporary, but sometimes they are permanent.  Are you alright with losing the ability to feel the world for the rest of your life?

Infertility

Well for some this might not seem like that big of deal, but for most it is.  There is no experience like this one.  I don’t have any kids and maybe I would have never had any anyways, but it should have been my choice.  It should be your choice.  Are you willing to never be able to have kids?  It is important that you take some time to think about this before you are pushed into treatment.

Hair Loss

When someone tells you that you’re going to experience hair loss, they are going to fail to adequately describe what it might be like.

My father once said to me that my hair was a small price to pay for my life.  That is coming from a man who has never gone through chemotherapy.  Sure he may have lost his hair to male pattern baldness, but that is nothing compared to the experience of watching your hair fall out before your very eyes.

To wake up in the morning and see that your pillow is covered with so much of your hair it looks like a cat has just shed on it.  To run your hands through it and watch clumps of it come loose between your finger tips.

So much of your identity is wrapped up in your hair.  Its not just the hair on your head though.  Everything goes.  When my hair started falling out of my head it was traumatic, but when my body hair, eye brows and eye lashes started falling out it was horrific.

Of course this is just a temporary side effect, but I have read about some chemo drugs where it wasn’t.  Before you decide to start treatment, ask yourself if the loss of your hair is worth it.

Fatigue

When someone tells you that you’re going to experience fatigue, they are going to fail to adequately describe what it might be like.

I think the way it was described to me was that I was going to be really tired. Tired… well that doesn’t do chemo fatigue justice.  If I were to describe it I would say imagine pouring glue into your muscles while wrapping ropes of exhaustion around your bones.  Take those ropes and pull them taught, then tug on them back and forth so they would grind against your bones and tear against your muscles.  Imagine a sensation akin to your flesh ripping as you stand or walk. An exhaustion that keeps you out of breath,  causes incredible pain when you try to move and makes every activity unbearable.

I’d say it is similar to the body sensations of being up for days and days.  Its the sick lethargy you get when you have the flu or are incredibly depressed.  Its an inescapable, never ending horror.

Conclusion

These are just a few of the experiences you may encounter while going through treatment. You need to know if you are willing to endure them.  More importantly you need to know why you are enduring them.  What benefits does your doctor say you will gain from the treatment they are suggesting?  Are there any tests can be used to quantify these results? Is the time you could gain from these treatments worth the sacrifice in quality of life?

You are the only one who can answer these questions.   The choice you make needs to be yours and yours alone.  You are the only one who has to live with the side effects of the treatment, no one else can take that horror from you.  Live for you, live for your reasons.  If you don’t want to do chemo, don’t do chemo.  If you want to do chemo, do it for you.

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