I have touched upon this before but the other half of having cancer, or any ailment, is the impact on the patient's partner or spouse. Somehow that gets skipped. The spouse sometimes becomes the silent partner without support in a cancer journey.
I know dozens of people with cancer and other ailments - either in person or online - and each handle it differently.
Since we got married eight years ago, I have had five surgeries, numerous procedures, and other medical adventures and been diagnosed with breast cancer, rheumatoid arthritis, and fibromyalgia as well as degenerating disks, gall stones, and I can't remember everything else.
My husband comes with me on all important doctor appointments - he is allowed to see everything but a pelvic exam and the scale when it shows my weight. (The first has never been an issue and the second he is always told to turn away or close his eyes and the nurses write it down without saying a thing.)
I wanted him at the 'bad' appointments because I wanted support from him and also felt that he should be involved as they were going to have a lot of impact on our lives so he should be able to hear whats going on and ask his own questions.
Even now that my doctor appointments are not dealing with cancer treatment, I still call him immediately after every one to share any news about my health.
When he had his own cancer issues a few years ago, I went with him on all his appointments to hear what the doctor has to say and make sure his questions got answered. I needed to be involved so I could support him as best I could.
But then I have friends who go to all their cancer appointments by themselves and chose not to involve any family members in their treatment. I have friends who drove themselves to all their chemo infusions. I always needed a nap after mine and wasn't sure I could drive myself home.
I know there is a line between sucking up all their time and no one wants to go to as many doctor appointments as I have (a minimum of 50/year - really) but sometimes I think you need the support.
Studies have shown that husbands feel isolated when their wives have breast cancer - they don't get the support they need. A cancer diagnosis is not a one person adventure, it involves the patients family as well.
Doctors are happy to include spouses in medical discussions. I think a spouse who is involved will feel less isolation as they become part of the cancer journey as opposed to a bystander.
Showing posts with label sharing. Show all posts
Showing posts with label sharing. Show all posts
Once Burned, Twice Shy
When you tell someone you have cancer, you can rightfully expect anywhere in a range of emotions. Anywhere from, 'oh, that's too bad, my uncle died of it'; taking a step back 'I am late for an appointment''; or, the ever thoughtful, 'how long do you have?' Occasionally you get a nice person who recognizes that you have just been giving a life changing diagnosis and treats you normally and says something like 'can I help you at all?'
After dealing with that for a few decades, you can understand I can be a bit reluctant to bring up new ailments, like rheumatoid arthritis and fibromyalgia. But tentatively I have talked about it. I have had quite a range of responses. From a rather outspoken co-worker 'ow, that's a bad one'. From others at the gym 'and you are still here working out, that's great'. Or from friends 'when will it get better?'
In other words, I am pleasantly surprised at the positive responses. I think somewhere inside, I was expecting the people to react the same as they would to a cancer diagnosis. Because it was a big change in my life, similar to a cancer diagnosis.
With the long weekend I allowed myself some downtime where I could contemplate while knitting and watching the cat snore (that's the height of my multi-tasking abilities these days). This gave me time to think about the differences between the two words: cancer and rheumatoid.
Both are life altering. Both leave you changed forever. So why does one have to make people run away?
After dealing with that for a few decades, you can understand I can be a bit reluctant to bring up new ailments, like rheumatoid arthritis and fibromyalgia. But tentatively I have talked about it. I have had quite a range of responses. From a rather outspoken co-worker 'ow, that's a bad one'. From others at the gym 'and you are still here working out, that's great'. Or from friends 'when will it get better?'
In other words, I am pleasantly surprised at the positive responses. I think somewhere inside, I was expecting the people to react the same as they would to a cancer diagnosis. Because it was a big change in my life, similar to a cancer diagnosis.
With the long weekend I allowed myself some downtime where I could contemplate while knitting and watching the cat snore (that's the height of my multi-tasking abilities these days). This gave me time to think about the differences between the two words: cancer and rheumatoid.
Both are life altering. Both leave you changed forever. So why does one have to make people run away?
Another government report
There was a big interagency report released this week on breast cancer. This was the result of a requirement by a 2004 Act of Congress requiring Health and Human Services (and the creation of an alphabet soup agency - IBCERCC) to review "the current state of breast cancer and the environment research and make recommendations for eliminating any knowledge gaps in this area."
You can read more detail about the report, a summary of its findings, and the report itself (and the Act of Congress) here. If you google it, you can find oodles of information on it - critiquing the report, praising it, and summarizing it. Here's one article on it and another one.
My biggest take away, I have not read the report only the summary articles, is this (I can have an opinion even though I only read the Cliff notes version). :
"What’s needed is better coordination among researchers and increased research funding, according to the report."
I'm all for better coordination among researchers. I mean do they talk to each other and share their progress or do they sink into holes in the ground and focus on what they are doing and hide the results until they can get a patent or from fear someone will steal their idea? Or do they talk to each other and share progress between labs during the process?
All I can tell at this point is that it took an Act of Congress, a government report, an alphabet soup agency, and nine years to tell us sharing is good.
You can read more detail about the report, a summary of its findings, and the report itself (and the Act of Congress) here. If you google it, you can find oodles of information on it - critiquing the report, praising it, and summarizing it. Here's one article on it and another one.
My biggest take away, I have not read the report only the summary articles, is this (I can have an opinion even though I only read the Cliff notes version). :
"What’s needed is better coordination among researchers and increased research funding, according to the report."
I'm all for better coordination among researchers. I mean do they talk to each other and share their progress or do they sink into holes in the ground and focus on what they are doing and hide the results until they can get a patent or from fear someone will steal their idea? Or do they talk to each other and share progress between labs during the process?
All I can tell at this point is that it took an Act of Congress, a government report, an alphabet soup agency, and nine years to tell us sharing is good.
Sharing information
Today's topic for Wego Health Blog month is choosing what information to share.
When I was diagnosed with thyroid cancer, cancer was the big C, I was young, and cancer was the killer. I quickly learned that the word cancer made people frequently run away from me. I grew to like 'selective sharing' and only sharing with those I felt were in on the 'need to know'. I didn't tell long term friends for sometimes decades.
At my second diagnosis, I said to myself, the heck with this, I am going to be a bit more open about my cancer and now am comfortable living a life that includes the word 'cancer'. This isn't to say I introduce myself to total strangers as someone who has been diagnosed with cancer. But there are times when I do openly talk about it.
I have two part time jobs. One of them is at a local cancer support organization. There I am quite open with that group as its full of people who have had cancer or who treat people with cancer. I think most of them are fairly aware of my medical background.
At my other job, they all think I know so much about cancer and its treatment because of my job at the cancer center. They do not know about my cancer, they just think I am incredibly unhealthy with a bad back, fibromyalgia, RA, tennis elbow, bad ankle, and more. They laugh at all my doctor appointments and tease me about my ailments. Sometimes I was tempted to tell them about it but then one day one of my coworkers said that every time she hears the word 'cancer', she just assumes that the person is done for. That was it. I no longer considered that as an option.
So how do I decide where to draw the line. I do not broadcast my ailments. I also don't feel the need to keep everyone, including family members, updated with minute by minute updates on the latest ailment and treatments. Sometimes I am more open about things than others. It really depends on the ailment, who the conversation is with.
If my medical issues do not impact the situation, I leave them out. If my medical issues do impact the situation, I may bring it up. If I am asked if I want to go to a museum, I will probably decline. If pushed I might tell them I simply can't stand around like that to enjoy the time.
The level of detail that I share is usually very little. However if a friend calls me up and asks about a specific medical procedure that I have had the privilege of undergoing because they are going to have the procedure, I am happy to share all sorts of details including pain level, hospital stays, recovery, questions they should ask their doctor, etc.
So maybe I still live by the 'selective sharing' on a 'need to know basis'. Maybe I haven't changed as much as I thought.
When I was diagnosed with thyroid cancer, cancer was the big C, I was young, and cancer was the killer. I quickly learned that the word cancer made people frequently run away from me. I grew to like 'selective sharing' and only sharing with those I felt were in on the 'need to know'. I didn't tell long term friends for sometimes decades.
At my second diagnosis, I said to myself, the heck with this, I am going to be a bit more open about my cancer and now am comfortable living a life that includes the word 'cancer'. This isn't to say I introduce myself to total strangers as someone who has been diagnosed with cancer. But there are times when I do openly talk about it.
I have two part time jobs. One of them is at a local cancer support organization. There I am quite open with that group as its full of people who have had cancer or who treat people with cancer. I think most of them are fairly aware of my medical background.
At my other job, they all think I know so much about cancer and its treatment because of my job at the cancer center. They do not know about my cancer, they just think I am incredibly unhealthy with a bad back, fibromyalgia, RA, tennis elbow, bad ankle, and more. They laugh at all my doctor appointments and tease me about my ailments. Sometimes I was tempted to tell them about it but then one day one of my coworkers said that every time she hears the word 'cancer', she just assumes that the person is done for. That was it. I no longer considered that as an option.
So how do I decide where to draw the line. I do not broadcast my ailments. I also don't feel the need to keep everyone, including family members, updated with minute by minute updates on the latest ailment and treatments. Sometimes I am more open about things than others. It really depends on the ailment, who the conversation is with.
If my medical issues do not impact the situation, I leave them out. If my medical issues do impact the situation, I may bring it up. If I am asked if I want to go to a museum, I will probably decline. If pushed I might tell them I simply can't stand around like that to enjoy the time.
The level of detail that I share is usually very little. However if a friend calls me up and asks about a specific medical procedure that I have had the privilege of undergoing because they are going to have the procedure, I am happy to share all sorts of details including pain level, hospital stays, recovery, questions they should ask their doctor, etc.
So maybe I still live by the 'selective sharing' on a 'need to know basis'. Maybe I haven't changed as much as I thought.
Would you share?
Two things happened yesterday (well lots more than two things happened in my life but these two made me think) and I started thinking. How much and when do you tell your cancer story? This isn't as easy as you might think. Once you tell the world you can't 'untell' it. And people still have a tendency to put you in that special category of 'on their way out' once they hear that c-word. Would a hiring manager, ignore the C-factor when reviewing your resume? Would people start treating you differently? Would it bring the crazies out of the woodwork? Would friends start rejecting you? These are very real questions.
First and foremost, your health is no one's business but your own. If you choose to share, its your decision. No one should 'share' for you. It is not their story to tell. And second, how public do you want to be? Again, you can't undo it. Once its out there, it never goes back. But I will say that my blog was picked up by Parade Magazine last fall (scroll down, I am below the fold) and it didn't change my life. I don't think anyone read it.
Yesterday morning my husband forwarded me an email from work where a colleague's wife has been diagnosed with breast cancer. The email came from an employee who had spoken with the colleague (husband) and he thought his wife could use a plant or something (a plant? get real) and they were going to send a thinking of you card. I'm not sure what good a plant would do but a card might be nice. (I think a plant is husband-speak for I haven't got a clue but its a really nice thought to do something.)
When I was diagnosed my husband didn't bring it up at work because he didn't think it was their business (and I agreed). I did urge him to privately tell us boss that I was having health issues and that is why he kept taking time off to take me to treatments. But nothing was ever circulated through the office about me. I don't think I would want it.
Would you want your health to be emailed around your spouse's office? I would want to be consulted and ask what benefit would come out of it. A card is okay. A stupid plant not so much. A bunch of sympathy from people you don't know? Maybe if we socialized with my husband's colleagues and their spouses, but I do not make deep long term friendships through work environments. Work and friends are separate. So I guess I'm saying you can keep your cards and plants.
Later in the day I received an email from an online cancer community that Women Magazine is looking on Facebook for breast and ovarian cancer people to tell their story:
Breast and ovarian cancer survivors share your story! We love to include survivor stories in our quarterly print issue. If you would like to share your story in our fall issue, please let us know by sending an email to editor@omnihealthmedia.com.
In the first nano-second I was going to send in my name. But then I took a second nano-second to say 'no thanks, I want my privacy'. I would prefer not to be put in the spotlight of national media. That's a big step that I am not ready to take.
First and foremost, your health is no one's business but your own. If you choose to share, its your decision. No one should 'share' for you. It is not their story to tell. And second, how public do you want to be? Again, you can't undo it. Once its out there, it never goes back. But I will say that my blog was picked up by Parade Magazine last fall (scroll down, I am below the fold) and it didn't change my life. I don't think anyone read it.
Yesterday morning my husband forwarded me an email from work where a colleague's wife has been diagnosed with breast cancer. The email came from an employee who had spoken with the colleague (husband) and he thought his wife could use a plant or something (a plant? get real) and they were going to send a thinking of you card. I'm not sure what good a plant would do but a card might be nice. (I think a plant is husband-speak for I haven't got a clue but its a really nice thought to do something.)
When I was diagnosed my husband didn't bring it up at work because he didn't think it was their business (and I agreed). I did urge him to privately tell us boss that I was having health issues and that is why he kept taking time off to take me to treatments. But nothing was ever circulated through the office about me. I don't think I would want it.
Would you want your health to be emailed around your spouse's office? I would want to be consulted and ask what benefit would come out of it. A card is okay. A stupid plant not so much. A bunch of sympathy from people you don't know? Maybe if we socialized with my husband's colleagues and their spouses, but I do not make deep long term friendships through work environments. Work and friends are separate. So I guess I'm saying you can keep your cards and plants.
Later in the day I received an email from an online cancer community that Women Magazine is looking on Facebook for breast and ovarian cancer people to tell their story:
Breast and ovarian cancer survivors share your story! We love to include survivor stories in our quarterly print issue. If you would like to share your story in our fall issue, please let us know by sending an email to editor@omnihealthmedia.com.
In the first nano-second I was going to send in my name. But then I took a second nano-second to say 'no thanks, I want my privacy'. I would prefer not to be put in the spotlight of national media. That's a big step that I am not ready to take.
Subscribe to:
Posts (Atom)
