The proverbial 'they' always talk about cancer patients and success stories either in generalities full of percentages with lots of big words - 37% of patients with diagnosis A tend to show positive responses to treatment protocol Q while 82% show positive responses to protocol ZB37. Then you hear stories about individuals who had this outcome or that one.
But what if it could all be consolidated into a big pie where it could be dissected and analyzed? Then the data could be better understand and prognoses could be better predicted. Patients might even handle treatment better. Who would have thunk? Individualized medicine could be better understood and more wide spread. Cancer research will become easier and faster.
Public Health England is going to do exactly that - develop a huge public cancer database. I think this is a great idea. Statistical analysis aside (as well as statistical paralysis) it would provide so much information about existing patients that the benefits are unimaginable.
Now England is a much smaller country than the US with approximately 350,000 new tumors diagnosed each year so its is more manageable. In the US, the number is 1.6 million so it would be that much more difficult.
Oh CRAP, I did do that!
I am not a creative person at all. I can draw stick figures, barely. At one point I was in 4H and Girl Scouts and learned to sew, knit, crochet, embroider, and needlepoint. I might have won a 4H ribbon or two but they were given to all entries. That phase of my life changed around Junior High when I moved on to more esoteric pursuits - boys, figure skating, etc.
A few decades later, my brother and sister in law started having children. She, my sister in law, is a very crafty person. I enlisted her help in picking out yarn and a pattern to make a baby blanket for her second child - my nephew who is now 14 and nearly 6' tall. That baby blanket was never finished and now would only be of use to him for his children in another 15 years or so. It is now in a bag somewhere....
Then I got married, life got chaotic, I got cancer andI guess I was annoying my friends so much while I was home dealing with chemo, that one of them, Judie, said to me 'you need a hobby'. I agreed, calling friends while they are at work, reading bad novels, and watching bad reality television wasn't going to get me through chemo any easier.
I went back to crochet. I got some yarn and a few crochet hooks. Then I got more yarn, some knitting needles. I discovered the evil benefits of the sale section of yarn stores. Everyone in my family got a scarf for Christmas that year. Then all my friends got a scarf for their birthday.
Then I discovered I am addicted to yarn and knitting and crocheting. I have bags of finished products. I have more bags of UFOs (unfinished objects). I have even more bags of yarn (an unofficial member of SABLE - Stash Acquired Beyond Life Expectancy). I have switched to larger projects to slow down my production as I have enough scarves and cowls knit for a couple seasons of holiday craft shows.
I am finishing a knit crazy child's blanket where I will sew together a multitude of triangles and finish with a pale yellow edge. I am just starting a patchwork blanket for our bed which will be in squares of the same yarn knit in different patterns sewn together. This should take me most of the rest of the summer.
I like knitting and crocheting - its relaxing and non-fattening.
Some where along the line I would often see information on creative arts classes to help people with cancer heal and cope. I would say that is so not me as I only draw stick figures. Besides I am not someone who feels the need to scrap book, decorate my house with handmade 'what-nots' (or dust collectors). I am not creative. I don't need those classes.
Slowly it has dawned on me. CRAP, I did do that. I did use creative arts to help heal and cope. And I didn't need a class for it. I just need more yarn stores for more yarn to fuel my addiction and increase my stash.
A few decades later, my brother and sister in law started having children. She, my sister in law, is a very crafty person. I enlisted her help in picking out yarn and a pattern to make a baby blanket for her second child - my nephew who is now 14 and nearly 6' tall. That baby blanket was never finished and now would only be of use to him for his children in another 15 years or so. It is now in a bag somewhere....
Then I got married, life got chaotic, I got cancer and
I went back to crochet. I got some yarn and a few crochet hooks. Then I got more yarn, some knitting needles. I discovered the evil benefits of the sale section of yarn stores. Everyone in my family got a scarf for Christmas that year. Then all my friends got a scarf for their birthday.
Then I discovered I am addicted to yarn and knitting and crocheting. I have bags of finished products. I have more bags of UFOs (unfinished objects). I have even more bags of yarn (an unofficial member of SABLE - Stash Acquired Beyond Life Expectancy). I have switched to larger projects to slow down my production as I have enough scarves and cowls knit for a couple seasons of holiday craft shows.
I am finishing a knit crazy child's blanket where I will sew together a multitude of triangles and finish with a pale yellow edge. I am just starting a patchwork blanket for our bed which will be in squares of the same yarn knit in different patterns sewn together. This should take me most of the rest of the summer.
I like knitting and crocheting - its relaxing and non-fattening.
Some where along the line I would often see information on creative arts classes to help people with cancer heal and cope. I would say that is so not me as I only draw stick figures. Besides I am not someone who feels the need to scrap book, decorate my house with handmade 'what-nots' (or dust collectors). I am not creative. I don't need those classes.
Slowly it has dawned on me. CRAP, I did do that. I did use creative arts to help heal and cope. And I didn't need a class for it. I just need more yarn stores for more yarn to fuel my addiction and increase my stash.
Tellling the honest answer
So you run into to someone you know and haven't seen in a long time. They greet you and say 'how are you? You reply 'fine, and you?'. Or should you answer honestly? They say honesty is the best policy but if it makes someone stop in their tracks, fall over in shock, or run for the hills screaming, is that really the case?
I mean if I gave the honest answer to that question I could say 'well, after two cancer diagnoses, rheumatoid, fibromyalgia, and degenerating disks in my back, I'm feeling just fine'. I think that's a little too much information. Maybe I should stick with the high points, 'I have been happily married for eight years and we bought a house we like.'
Or there is always the ever so polite which reveals absolutely nothing, 'just fine, how are you?' But if they are/were a true friend, wouldn't you want to tell them a little more? But then you find out they weren't the friend you thought they were and you never hear from them again? Yes that happens, more frequently than you might think.
The same can be said of living the ups and downs post cancer. Your doctor always wants 'to be sure, because your more medical history, blah, blah, blah'. So you live from appointment to appointment waiting for those little magical moments where they say its not a cancer related thing. Sometimes there are little detours down the devious side paths of procedures and tests where you might 'feel a pinch' - both physically and emotionally.
So how much do you disclose to everyone? Do you tell everyone about each little test and 'medical adventure' so they can support you and help you through it? Or do you keep it quiet and wait until you know more. But then you may be hiding at home with your scanxiety and pretending everything is fine?
Its a fine line to negotiate. The well meaning people may be suffocating you with their good intentions. They call and ask how you are doing so you tell them fine even if its not so good. Just to avoid the suffocation. Or you think they might be heading for the hills and you don't want to push them away.
I feel like I often end up keeping everything quiet and pretending I am healthy as a horse.
Right now, I am just fine. I am getting over a cold that won't go away and I refuse to disclose any more.
I mean if I gave the honest answer to that question I could say 'well, after two cancer diagnoses, rheumatoid, fibromyalgia, and degenerating disks in my back, I'm feeling just fine'. I think that's a little too much information. Maybe I should stick with the high points, 'I have been happily married for eight years and we bought a house we like.'
Or there is always the ever so polite which reveals absolutely nothing, 'just fine, how are you?' But if they are/were a true friend, wouldn't you want to tell them a little more? But then you find out they weren't the friend you thought they were and you never hear from them again? Yes that happens, more frequently than you might think.
The same can be said of living the ups and downs post cancer. Your doctor always wants 'to be sure, because your more medical history, blah, blah, blah'. So you live from appointment to appointment waiting for those little magical moments where they say its not a cancer related thing. Sometimes there are little detours down the devious side paths of procedures and tests where you might 'feel a pinch' - both physically and emotionally.
So how much do you disclose to everyone? Do you tell everyone about each little test and 'medical adventure' so they can support you and help you through it? Or do you keep it quiet and wait until you know more. But then you may be hiding at home with your scanxiety and pretending everything is fine?
Its a fine line to negotiate. The well meaning people may be suffocating you with their good intentions. They call and ask how you are doing so you tell them fine even if its not so good. Just to avoid the suffocation. Or you think they might be heading for the hills and you don't want to push them away.
I feel like I often end up keeping everything quiet and pretending I am healthy as a horse.
Right now, I am just fine. I am getting over a cold that won't go away and I refuse to disclose any more.
A lttle negativity
Today is the Fourth of July and (unless you are still fighting a damn cold) most Americans will be enjoying barbecues, fireworks, the beach, and having all sorts of fun.
Then the media has to come along like a wet blanket. First we have, How To Avoid Getting Cancer From Your BBQ. After the doom and gloom headline, the real answer comes buried way down. "If you’re grilling and following the proper safety tips, the risk of getting cancer from grilling food is very low."
So first the fear and then the honest truth.
Then the media has to come along like a wet blanket. First we have, How To Avoid Getting Cancer From Your BBQ. After the doom and gloom headline, the real answer comes buried way down. "If you’re grilling and following the proper safety tips, the risk of getting cancer from grilling food is very low."
So first the fear and then the honest truth.
Then we have the fact that there are carcinogens in Pepsi. I don't think I have had a Pepsi myself in decades. Who still drinks that much soda any more? And who ever thought Pepsi was a healthy beverage?
But I digress. Just more of the media being a wet blanket.
Yes they are ominous warnings. Cancer risk is nothing to minimize but let's keep risks to real levels and not over stress them. The media times their stories to make sure that they get the most coverage because its a time of year when more and more will be barbecuing or drinking soda. These would get less coverage in January simply because its cold and there is less barbecuing and more hot chocolate.
Happy July 4th to you all, just watch out for your carcinogen intake and out of line negativity.
Looking for new news
I receive several billion regular updates on advances in the treatment of breast cancer, thyroid cancer, rheumatoid arthritis, fibromyalgia and back pain, among other ailments. Every so often something pops up and grabs my attention or even the headlines on new advances that show some real significance.
But they always speak of small studies and that more research is needed. And then we never seem to hear the results of anything only that more research is needed. And nothing seems to ever help me positively. All I have gotten so far is to learn that I need to stay on Femara an extra five years. But no miracle cure.
After six years of this obsession with cancer research, I feel like there is not much new. Maybe its the lack of the significant breakthroughs that impact me positively. Maybe its frustration with my health's continued downhill slide.
There has been so much promising research but we never seem to see the results. A significant part of this I think is do we remember five years ago when they said this looks good because of this but it needs more research. Now the research is done but we can't connect it because its been too long.
There should be away to easily connect all of this so we can see the long term progress.
But they always speak of small studies and that more research is needed. And then we never seem to hear the results of anything only that more research is needed. And nothing seems to ever help me positively. All I have gotten so far is to learn that I need to stay on Femara an extra five years. But no miracle cure.
After six years of this obsession with cancer research, I feel like there is not much new. Maybe its the lack of the significant breakthroughs that impact me positively. Maybe its frustration with my health's continued downhill slide.
There has been so much promising research but we never seem to see the results. A significant part of this I think is do we remember five years ago when they said this looks good because of this but it needs more research. Now the research is done but we can't connect it because its been too long.
There should be away to easily connect all of this so we can see the long term progress.
Your medical records
In recent years, medical records have become more and more available to the patient. Some medical facilities make them available on line. Others offer them at the end of each doctor visit.
I have tried toread translate my medical records. It is not as easy as you think. If it says 'patient denies... ' that just means you said you didn't have whatever they asked you about. They are also full of vague 'doctorisms' that are not as clear to the average patient. That is fine by me.
They are full of the doctor's opinion about what is going on with me. This means they are full of the thoughts and opinions of people who went ot medical school to unravel my medical mysteries. They could probably write theses on my medical uniqueness at this point. And my unique ways - for instance if I find a 'something' its guaranteed to be a 'nothing'. But if a test finds 'something' its guaranteed to be a 'bad thing'.
But I digress.
A medical record is a pile of doctor notes, test results, procedures, diagnoses, treatment plans, and professional medical opinions.
There is the thought process that patients should find out whats in their medical records. I agree with this. I do get copies of test results. I have been known to ask what is in my records and disagree with it.
But I am not sure I think I should be able to edit my medical record as if it was a Wiki. A medical record should stand as the medical professionals' version of me. It is sort of a reference list of my medical history (blah, blah, blah) and should be what it is and nothing else.
I could add a separate list of information which becomes the patient's side of it. I mean if the doctor said I seemed to tolerate a procedure well. I could happily record in my version that I was uncomfortable and basically it was a very sucky experience. From the doctor's point of view, I might have been uncomfortable but it wasn't a walk in the park as most medical adventures are.
I am an advocate for my health but I also respect that medical professionals went to school for their training and are working with in their professional detachment to keep the emotions out of it. I am full of emotions about me.
Which reminds me, next week I need to go pick up copies of my latest test results to make sure I keep up with my latest.
I have tried to
They are full of the doctor's opinion about what is going on with me. This means they are full of the thoughts and opinions of people who went ot medical school to unravel my medical mysteries. They could probably write theses on my medical uniqueness at this point. And my unique ways - for instance if I find a 'something' its guaranteed to be a 'nothing'. But if a test finds 'something' its guaranteed to be a 'bad thing'.
But I digress.
A medical record is a pile of doctor notes, test results, procedures, diagnoses, treatment plans, and professional medical opinions.
There is the thought process that patients should find out whats in their medical records. I agree with this. I do get copies of test results. I have been known to ask what is in my records and disagree with it.
But I am not sure I think I should be able to edit my medical record as if it was a Wiki. A medical record should stand as the medical professionals' version of me. It is sort of a reference list of my medical history (blah, blah, blah) and should be what it is and nothing else.
I could add a separate list of information which becomes the patient's side of it. I mean if the doctor said I seemed to tolerate a procedure well. I could happily record in my version that I was uncomfortable and basically it was a very sucky experience. From the doctor's point of view, I might have been uncomfortable but it wasn't a walk in the park as most medical adventures are.
I am an advocate for my health but I also respect that medical professionals went to school for their training and are working with in their professional detachment to keep the emotions out of it. I am full of emotions about me.
Which reminds me, next week I need to go pick up copies of my latest test results to make sure I keep up with my latest.
This annoys me
This really annoys me to no end. I get all sosrts of emails about cancer, people with cancer, research on cancer, and 'exciting' news about cancer fundraisers and other things.
Recently in these emails, there have been
Since when with people with cancer become sufferers and victims? I detest the word survivor as well but sufferers and victims? Really?
These were included in the titles of actual news articles. The reporters need a bit of sensitivity training I think.
Recently in these emails, there have been
- cancer sufferers
- cancer victims
- cancer survivors.
Since when with people with cancer become sufferers and victims? I detest the word survivor as well but sufferers and victims? Really?
These were included in the titles of actual news articles. The reporters need a bit of sensitivity training I think.
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