Showing posts with label education. Show all posts
Showing posts with label education. Show all posts
Pre-Treatment Education

Pre-Treatment Education

So you get a crappy diagnosis, I have had a few, and you instantly want your body fixed! Quickly you rush to the surgeon and get the nastiness removed. With cancer, after surgery you usually get more fun with treatment such as chemo and radiation. Then pow, your body starts protesting and you instantly end up with multiple side effects, including ones that could cause permanent damage to your body and require additional surgeries.

This scenario is not that uncommon with breast cancer patients. Women want that thing out! They have surgeries and chemo and radiation. I have friends who ended up with problems with their mastectomies which required multiple more surgeries. Some have suffered through problems with the 'donation' site on their bodies where tissue was taken to create a 'foob' after a mastectomy. I have a friend with permanent cardiac damage as a result of chemotherapy. Me, and others, have lymphedema as a result.

The rush to surgery means lack of attention to potential side effects and body changes, both physical and emotional. Not enough attention is placed on the after effects. I have always thought that with both my breast cancer surgeries and treatment and many other medical procedures.

This morning I read over at Hen Backtalk and found a link to an article talking about what kinds of tests to request before treatment. While the doctor, author of the article, focuses on specific tests before breast cancer chemotherapy. But I believe this is true, I think this is a very valid point. Not enough focus is given to this part of the medical decision making process.

Doctors and other medical professionals usually can't give us all the details because they usually have not had the treatment protocol themselves. I think if you are facing a major medical decision, especially cancer treatment, find someone who has been through this themselves before making any decision. Cancer surgeries are usually focused on removing as much of the cancer as possible and getting clean margins. So with breast cancer, for example, you might end up very 'lopsided' due to the need to get the clean margins. You can't have enough information before major surgery.

This is where support groups and online forums can be so helpful. Don't be shy, get out there and ask your questions. Find someone who has gone through the procedure and decision process you are facing to learn about side effects and after effects in general. Education is always good.
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When Will I Learn?

The answer is not anytime soon. Yesterday I went to a craft show and had a booth. I had a blast. I sold tons of my stuff and had a lot of fun at the same time. I might have even made a new friend.

But obviously I am not the best candidate to leave home at 620 AM to get to the show at 7 AM, set up my booth, sit and stand for hours, and break down my booth, and drive home to get home at 530 PM. I also lifted things, dragged things, set up folding tables and a canopy. I pulled things out of my car and then put them back in. I did all those things my doctors are telling me not to do - lift, carry, twist, push, pull, etc.

Today I am paying the price. I am sore and achy. I am sore in places that haven't hurt in recent years. My right knee, which has a partially torn ACL for the last 15 years, is now complaining. Significantly. I think I need ice and elevation for a while to make it feel better. Then I can tell you about the place in my back which had injections on Thursday. Its very unhappy.

So when will I learn? I need to learn that my body is not built for any of this any more. I need to learn to be a nice sedate quiet person. (I almost typed 'sedate little old lady' but I am definitely not ready for that classification. I want my tombstone to say something along the lines of 'that was one hell of a ride'. And I doubt I will ever be called sedate, unless it was in the context of being sedated, queue the Ramones song now.)

I may need to sedate myself to get through the next 24-48 hours. 

But I really need to learn to stop over doing things now so I stop needing to recover from them. 
Medical School

Medical School

Although I was designated the office doctor last week, I am now going to medical school. It started yesterday and continues for the next 7 weeks. Someone referred me to it a while back and I registered at canvas.net and now it starts.

I was traveling yesterday so I haven't had a chance to start my first class on Anatomy and Physiology. It should take me an hour or so each week. I am looking forward to it. The other courses are a second week in Anatomy and Physiology, Cellular and Molecular Biology, Immune System, Infectious Disease, Neuroscience and (my favorite) Cancer Biology before finishing up.

Why am I adding to my busy schedule with mini-medical school? Because I hope it will help me understand my body and why it keeps on having so many issues. I figure I am a prime candidate to learn about medicine as I seem to have a lot of interaction with the medical profession.

What I really want is a cure for all that ails me but I doubt that will happen anytime soon. But in the meantime, I can be smarter.
Standing up to the idiots

Standing up to the idiots

Okay I finally have a real resolution for the new year. I feel I can sum it by saying 'standing up to the idiots'. What I mean by this is that I no longer feel the need to politely step aside and keep my mouth shut when idiots try to tell me what to do.

With my health, I get lots of  'advice' on how to 'cure' myself or to rest up so I can participate in an activity. Now I feel the need to stop being polite and to speak up and politely tell them to be quiet. For example, if I have a back procedure, it is not going to cure my back. Its going to relieve some pain for a while. I repeat, it is not a cure. There is no cure for me. I am stuck with my health the way it is.

My goals are to slow progression of my RA, keep my fibromyalgia under control, and hope there is no cancer reappearance. I think I have real expectations for my health.

The idiots don't understand. I don't get to go to a lot of events and do things that involve much standing or walking or much of anything. Their frequent advice on maybe resting up ahead of time doesn't work for me. If I do too much, I pay the price by resting for a few days to recover.

It is time for me to stand up to the idiots. Maybe I would do better if I consider it educating them.
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Why don't we all have cancer?

As a cancer person, do you ever have those 'why me?' conversations with yourself? Well apparently everyone should really be having the conversations with themselves of 'why not me?'

I found this video on twitter, thanks to Matthew Zachary of Stupid Cancer. Its nine minutes of worthwhile watching. The host is a fairly interesting presenter.


So what did you think? Why don't we all have cancer?
Trying to scare or educate us?

Trying to scare or educate us?

I like these little articles found all over the internet: "signs of  [insert disease name here]". I just found one this morning for signs of oral cancer.

Oral cancer is not something that has crossed my mind really. A few years ago I had a pocket appear in the back corner of my mouth and the dentist (stupidly) said to me "Well it doesn't look like cancer but you really should have Dr F look at it to be sure." Note: never say that to someone with cancer.

But these are the signs of it so you should see your dentist regularly:
  • A sore on the lips, gums, or inside of your mouth that bleeds easily and doesn't heal
  • A lump or thickening in the cheek that you can feel with your tongue
  • Loss of feeling or numbness in any part of your mouth
  • White or red patches on the gums, tongue or inside of mouth
  • Difficulty chewing or swallowing food
  • Soreness or unexplained pain in your mouth, or feeling that something is caught in your throat with no known cause
  • Swelling of the jaw causing dentures to fit poorly
  • Change in voice
Now that I have this list, what should I do? Of course there are little lumps and bumps inside my mouth that I can feel with my tongue. I don't have dentures so that one is out.

Now that I have this list I can obsess over it for as long as I can remember it.... That's the biggest problem. We get a list of signs to look out for whatever the ailment is. We read it. We think about it. Then our brains are full and it falls out, or we convince ourselves we have it and rush off to the medical professional insisting that we are going to die!!!!

Scared or educated? I'm not sure.