With a cancer, or other 'icky', diagnosis, life has significant ups and downs. Sometimes people want support and sometimes they want privacy. It depends on lots of things - patient and family member's personality, type of diagnosis, current state on the medical roller coaster, among other issues. So the outsider is left to figure out when to intrude and when not to.
I have a friend who is coping with her husband's Stage IV cancer diagnosis and on-going treatment. It is hard to get together with her these days as she can't tell day by day how he will be doing and if she will be comfortable leaving him. We communicate by email and try to set up times to get together - which sometimes it takes months to meet.
Another friend has a long term friendship with another couple who have suffered a horrible family tragedy last year and now the wife is dealing with metastases in her Stage IV cancer diagnosis. They are normally a very private couple and usually keep their personal issues quiet. The husband sent my friend an email about his wife's disease progression.
My thought is that this is a cry for help and I think my friend should call them up and offer to bring lunch on Saturday or something so they can get together. If they are opening up at this horrible time in their life, it is a request for support that they know my friend can provide through her own experiences and their long term friendship.
My friend, on the other hand, isn't so sure and thinks they would not want the intrusion. She knows them and I don't so perhaps she is correct here. But it is very hard to tell in these situations
When is it time to intrude and when is it time to honor their privacy. This goes beyond the issue of hospital visits that I blogged about the other day.
Many patients with icky medical diagnosis set up ways to control communication so they are not overwhelmed - whether a blog (like me), a web page, Facebook page, Twitter feed, or email blasts. It can be very difficult to control the communication flow. How to balance the latest medical information, need for privacy, and over anxious friends and family members is a huge problem for many patients.
The last thing many patients need is daily phone calls from the same people asking for the latest updates - what did the doctor say, what did your scan show, are you worried, how are your children coping - have you told them yet, and a slew of other questions that pressure the patient to share when they may not be ready to do so. And if there are repeated requests over and over the patient's stress mounts at an already stressful time.
A patient's right to privacy must be respected but sometimes they do need some support. The tricky part is figuring out when to intrude.
Showing posts with label support. Show all posts
Showing posts with label support. Show all posts
Friendships and Cancer or other Ailments
This is an ever popular topic in the cancer blogsphere - friends and cancer (or other ailments). More specifically the friends who either:
But then there are the real friends who stick around when you are coping and help as they can.
AARP suggests saying a heartfelt 'I'm sorry' upon hearing someone is ill. I'm not so sure I would appreciate that as much as something more along the lines of 'well that really sucks'. But their other suggestions are good.
Then there is 'A Field Guide to the Wildlife of Cancer' which narrows down the categories to:
Some times I get so tired of some people I stop telling them about my ailments or newest medical adventure because its just stressful to keep hearing the same crap from the preachers, clueless, and bolters (if you can find them).
- run for the hills
- become a doctor instantly and tell you what treatment you need
- think you will be dead in a month
But then there are the real friends who stick around when you are coping and help as they can.
AARP suggests saying a heartfelt 'I'm sorry' upon hearing someone is ill. I'm not so sure I would appreciate that as much as something more along the lines of 'well that really sucks'. But their other suggestions are good.
Then there is 'A Field Guide to the Wildlife of Cancer' which narrows down the categories to:
- Preachers
- Clueless
- Angels
- Bolters
- Fellow Travelers
Some times I get so tired of some people I stop telling them about my ailments or newest medical adventure because its just stressful to keep hearing the same crap from the preachers, clueless, and bolters (if you can find them).
Cancer is cancer
This is a very interesting video on thyroid cancer and the stigma of having it.
Here's the premise: You are told you have thyroid cancer, you are told its the 'good' cancer and you will be fine. Then it turns nasty, and you feel like you were mislead and go through the whole cancer roller coaster. And you are being treated by an endocrinologist who may not have all the psycho-social support services available in the oncology department. Its the crazy cancer roller coaster.
Let's take it another step.
You are diagnosed with any type of cancer, early stage, and your doctors think you will be okay. You are on the cancer roller coaster but doing fine because treatment wasn't too bad, you did okay and you are doing fine. Then whammo out of the blue, your easy cancer became a not so good cancer and you are not doing well. The crazy cancer roller coaster is hitting you but much worse.
Society is training us that breast cancer, thyroid cancer or whatever are cancers that you get, are treated and move on. But cancer is cancer and that should never be the case. Society is wrong in this case.
Why don't have I have a patient navigator?
I need a patient navigator. The idea behind a patient navigator is to help newly diagnosed people deal with the mysteries of all these new doctors, treatments, and help them through the process by being there as the go-to person. Its part of the new patient centered care which is a great idea.
An experienced person is assigned to a newly diagnosed person. The experienced person can be someone who simply is more familiar with the hospital and how it works or can be someone who has been through the same ailment (s).
My health is complicated and I have lots of doctors so why don't I get a patient navigator? I think the real answer is that no one else has the same set of ailments as me. I know a couple people who have had both breast and thyroid cancer. I know other people with RA. I am not sure I know anyone else with fibromyalgia, yet - I am sure that will change.
The odds of getting breast cancer in a woman's life time is 12.4%
I couldn't find the odds of getting thyroid cancer but if there are 60,000 cases diagnosed in the US this year and which is about 1/4 the rate of getting breast cancer so we'll say its about 3.1%.
Fibromyalgia affects 2-4% of the population
Rheumatoid is diagnosed in an average of 41 of each 100,000 people.
If we do all that math the answer is three people. 0.124*0.031*0.04*41*3139.14=19.15 (see below for update)
What I did is 12.4% chance of getting breast cancer times 3.1% chance of getting thyroid cancer times 4% chance for getting fibromyalgia times those 41 RA patients in each 100,000 times 3139.14 for the 313,914,040 residents of the US.
So somewhere there are 18 other people who might be like me.
The other reason I don't have a patient navigator is I know the hospital I go to better than a lot of employees. I have been a patient there since 1981. It opened in its suburban location in the late 1970s. I run into people there who say I have been here since the 1990s. But then I tell them about the hospital before the first renovations when we all checked in at the front desk in a big line. Anyone who worked there when I started going there has since retired.
This is why I don't have a patient navigator.
I guess I have to suck it up and figure it out on my own. I'm not very good at the sucking up part.
*Update on 4/11 I found that the lifetime risk of thyroid cancer is 1.03% so that changes my little formula to 41*0.124*0.0103*0.04*3139.14 or 6.575268. So somewhere else in the US there might be 5 and 1/2 other people like me.
An experienced person is assigned to a newly diagnosed person. The experienced person can be someone who simply is more familiar with the hospital and how it works or can be someone who has been through the same ailment (s).
My health is complicated and I have lots of doctors so why don't I get a patient navigator? I think the real answer is that no one else has the same set of ailments as me. I know a couple people who have had both breast and thyroid cancer. I know other people with RA. I am not sure I know anyone else with fibromyalgia, yet - I am sure that will change.
The odds of getting breast cancer in a woman's life time is 12.4%
I couldn't find the odds of getting thyroid cancer but if there are 60,000 cases diagnosed in the US this year and which is about 1/4 the rate of getting breast cancer so we'll say its about 3.1%.
Fibromyalgia affects 2-4% of the population
Rheumatoid is diagnosed in an average of 41 of each 100,000 people.
If we do all that math the answer is three people. 0.124*0.031*0.04*41*3139.14=19.15 (see below for update)
What I did is 12.4% chance of getting breast cancer times 3.1% chance of getting thyroid cancer times 4% chance for getting fibromyalgia times those 41 RA patients in each 100,000 times 3139.14 for the 313,914,040 residents of the US.
So somewhere there are 18 other people who might be like me.
The other reason I don't have a patient navigator is I know the hospital I go to better than a lot of employees. I have been a patient there since 1981. It opened in its suburban location in the late 1970s. I run into people there who say I have been here since the 1990s. But then I tell them about the hospital before the first renovations when we all checked in at the front desk in a big line. Anyone who worked there when I started going there has since retired.
This is why I don't have a patient navigator.
I guess I have to suck it up and figure it out on my own. I'm not very good at the sucking up part.
*Update on 4/11 I found that the lifetime risk of thyroid cancer is 1.03% so that changes my little formula to 41*0.124*0.0103*0.04*3139.14 or 6.575268. So somewhere else in the US there might be 5 and 1/2 other people like me.
I need to widen my interests
Yesterday I went to a luncheon sponsored by the New England Coalition for Cancer Survivorship with a friend. She has had breast cancer and remarked when we arrived that she wasn't used to seeing men at cancer events. Breast cancer events are mostly filled with pink clad women.
The lunch was wonderful with recognition of many people who are helping people with cancer cope with life after treatment - a worthy cause. I knew several people there and made some new friends and connections.
However I started thinking (a dangerous undertaking to say the least) and decided I need to get more involved with the worlds of fibromyalgia and rheumatoid arthritis. I don't have connections. I don't know people involved.
There is a monthly pain support group that meets locally and has people with all kinds of pain ailments. I have attended once a few years ago and have recently wanted to go back. I believe the last two meetings were cancelled due to blizzards. I will try for the next one if I can but it might be when we have house guests.
I know there is life out there beyond cancer. I work for a man who has two children with cystic fibrosis, a nasty diagnosis to say the least, and he and his family are very involved with the CF world. I have a friend with MS and she is very involved with the local MS society (and wonders why they provide buffet meals for people with mobility issues).
So as I cut back on things in my life, I find I also need to expand into new areas as well. Instead of living in the cancer all the time channel, I need to add the fibromyalgia and rheumatoid as well. I am sure I have the energy for all this.
The lunch was wonderful with recognition of many people who are helping people with cancer cope with life after treatment - a worthy cause. I knew several people there and made some new friends and connections.
However I started thinking (a dangerous undertaking to say the least) and decided I need to get more involved with the worlds of fibromyalgia and rheumatoid arthritis. I don't have connections. I don't know people involved.
There is a monthly pain support group that meets locally and has people with all kinds of pain ailments. I have attended once a few years ago and have recently wanted to go back. I believe the last two meetings were cancelled due to blizzards. I will try for the next one if I can but it might be when we have house guests.
I know there is life out there beyond cancer. I work for a man who has two children with cystic fibrosis, a nasty diagnosis to say the least, and he and his family are very involved with the CF world. I have a friend with MS and she is very involved with the local MS society (and wonders why they provide buffet meals for people with mobility issues).
So as I cut back on things in my life, I find I also need to expand into new areas as well. Instead of living in the cancer all the time channel, I need to add the fibromyalgia and rheumatoid as well. I am sure I have the energy for all this.
Its a whole new world out there
So you get an ailment and, in the very 21st century way of doing things, you start a blog. You meet all kinds of people (in person and virtually), get and give support, and learn a lot about your ailment and resources available for you. You start following other blogs, sign up for communities and listservs, you get people to communicate with world wide.
Its amazing how much information and support is out there - its truly a wonderful thing. It can be a full time job to keep up on a single ailment.
But I started behind the curve as I had two ailments - two cancers - thyroid and breast to blog about. I have mostly focused on breast cancer but I have let the thyroid cancer come into play as well.
But now I have more ailments - fibromyalgia and rheumatoid - to cope with and blog about. I have followed more blogs, joined more online communities and listservs, my inbox has its own little folders to help manage the vast quantity of emails I receive - the most popular folders being 'Cancer' and 'Health'. I have a lot more to learn.
I never realized how insulated in the cancer world I was until I read the Rheumatoid Arthritis Guy's blog this morning about more of the best inflammatory arthritis blogs. I like the RA guy - he is a self described superhero blogging his way through chronic pain and debilitating inflammation. I will probably even join the monthly pain support group help locally as I learn more about my new issues.
I digress. Now I have a whole new world to learn about out there - find support, learn about my new ailments, and keep on blogging.
Its amazing how much information and support is out there - its truly a wonderful thing. It can be a full time job to keep up on a single ailment.
But I started behind the curve as I had two ailments - two cancers - thyroid and breast to blog about. I have mostly focused on breast cancer but I have let the thyroid cancer come into play as well.
But now I have more ailments - fibromyalgia and rheumatoid - to cope with and blog about. I have followed more blogs, joined more online communities and listservs, my inbox has its own little folders to help manage the vast quantity of emails I receive - the most popular folders being 'Cancer' and 'Health'. I have a lot more to learn.
I never realized how insulated in the cancer world I was until I read the Rheumatoid Arthritis Guy's blog this morning about more of the best inflammatory arthritis blogs. I like the RA guy - he is a self described superhero blogging his way through chronic pain and debilitating inflammation. I will probably even join the monthly pain support group help locally as I learn more about my new issues.
I digress. Now I have a whole new world to learn about out there - find support, learn about my new ailments, and keep on blogging.
If you have cancer, you need friends
There was a new study, because we needed a new study to keep the researchers busy, that says if you have a social life, you are more likely to survive breast cancer. I would assume this is the same as with other cancers. This even makes sense to my tiny little chemo brain.
There have been other studies showing that women who participate in breast cancer support groups have better outcomes and cope with treatment better.
If you have friends and a social life, even if you aren't going out three nights a week, it means you are talking to people, communicating your feelings, and interacting which saves you from sitting around and being depressed about your health, medical bills, or latest side effect.
When faced with a cancer diagnosis, many so called 'friends' run for the hills and you never see them. Then your real friends stand by you. Those are the ones who are important and you should spend your time with.
Also, going to a support group where you meet other people going through the same thing is very supportive as I noted above. Finally, online groups - whether Inspire, Facebook, or elsewhere - can help you find more and more support. The more people you can help and can help you, the better you will feel. While online friends are not the same as in-person friends, they can greatly contribute to your well being especially when you are not feeling well enough to get out.
So while cancer drives some friends away, go find real ones to compensate who will help you unknowingly.
There have been other studies showing that women who participate in breast cancer support groups have better outcomes and cope with treatment better.
If you have friends and a social life, even if you aren't going out three nights a week, it means you are talking to people, communicating your feelings, and interacting which saves you from sitting around and being depressed about your health, medical bills, or latest side effect.
When faced with a cancer diagnosis, many so called 'friends' run for the hills and you never see them. Then your real friends stand by you. Those are the ones who are important and you should spend your time with.
Also, going to a support group where you meet other people going through the same thing is very supportive as I noted above. Finally, online groups - whether Inspire, Facebook, or elsewhere - can help you find more and more support. The more people you can help and can help you, the better you will feel. While online friends are not the same as in-person friends, they can greatly contribute to your well being especially when you are not feeling well enough to get out.
So while cancer drives some friends away, go find real ones to compensate who will help you unknowingly.
Power of We - online support
Today is Blog Action Day 2012. The topic this year is the "Power of We". This reminds me of the commercial which shows the young girl singing the Star Spangled Banner and forgets the words. Then the audience starts singing with her and giving her the words. That is the Power of We.
We can do things together. What are some of the things that happen we people act together: Candidates get elected and laws get created. But also chat rooms and message boards allow us to join together and help each other.
Since being diagnosed with cancer a second time, I have learned about the support I can get by finding and bonding with people who are going through a similar diagnosis. Actually I first found out about message boards when I had a hysterectomy in 2005 and found hystersisters.org which provides great support and information for those having the surgery. I can't tell you how many people I have referred to that site since.
For breast cancer there are many message boards out there. One of the best ones is on breastcancer.org. The Komen website used to have some very active message boards but managed to lose many participants through poor handling on their end - including software updates, poor moderation, and lack of tech support.
For thyroid cancer, I have found that the Thyroid Cancer Survivor's Association's message boards provide no end of support as well.
Now when I have a new ailment, I go to find the message boards that will help me.
These are all examples of how people coming together and sharing their knowledge and experiences helps others. This is what happens when people work together.
We can do things together. What are some of the things that happen we people act together: Candidates get elected and laws get created. But also chat rooms and message boards allow us to join together and help each other.
Since being diagnosed with cancer a second time, I have learned about the support I can get by finding and bonding with people who are going through a similar diagnosis. Actually I first found out about message boards when I had a hysterectomy in 2005 and found hystersisters.org which provides great support and information for those having the surgery. I can't tell you how many people I have referred to that site since.
For breast cancer there are many message boards out there. One of the best ones is on breastcancer.org. The Komen website used to have some very active message boards but managed to lose many participants through poor handling on their end - including software updates, poor moderation, and lack of tech support.
For thyroid cancer, I have found that the Thyroid Cancer Survivor's Association's message boards provide no end of support as well.
Now when I have a new ailment, I go to find the message boards that will help me.
These are all examples of how people coming together and sharing their knowledge and experiences helps others. This is what happens when people work together.
Social media for patients
In this day and age of vanishing privacy with the spread of social media, one of the biggest groups this has had an impact on is patients - those with an ailment or hundred. When the internet first came along, one of the first groups to jump online were farmers and ranchers - they could check corn futures from the isolation of their snow bound abodes. As long as they had a phone line and a dial up (remember those) modem, they could improve their own financial security.
Now us patients can bare our innermost secrets to total strangers and get support world wide from people we will probably never meet. The internet has provided us access to millions of terabytes of medical information and the latest research. Social media has allowed us to strengthen bonds with strangers and learn to advocate for those who we meet online. I get support that gets me through the medical (mis)adventures and roller coaster twists and turns. We form little democracies with virtual mayors and leaders with our avatars displaying who we are and what we care about.
As a professional patient for the last five years I think this is the one thing that has had the biggest impact on my mental well being. Instead of being isolated by my ailments, I am supported through this online. When I had my hysterectomy in 2005, someone suggested Hystersisters as a place to find information and support. Up until that time I had primarily used the internet for work, job hunting, games, sending emails, etc. But an online community? I had no idea they existed and provided so much information.
Then with cancer, I found other communities - Crazy Sexy Life and the Komen message boards, quickly followed by a million more cancer message boards, Wego Health, Facebook, Twitter, and my latest is Pinterest. What I find humorous is that I have only been on Facebook for four years. I was already on Twitter, and several cancer message boards before then.
But social media is now something I would find difficult to live without. How else would I be able to find support when I need it?
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