I have been going to the same gym probably for eight years or so. I can't remember how long, nor to ask if they can tell me sometime while I am there. But its a great place for me and my ailments. It is also full of all kinds of other 'not-quite-healthy' people. O2 tanks, rollators, walkers, canes, and other body supports are not uncommon.
I have met many people there who I chit chat with while doing cardio and between resistance exercises. Its a very dedicated group who goes to the gym because of the extra attention we get for all our ailments. We get to know each other and notice when someone is not around for a while - is it surgery, vacation, or, or, or.... We breathe a silent sigh relief when we see people return.
There is one woman who I noticed shortly after she joined. Why did I notice here? She has that lovely chemo hair style, very sparse in many places on her head, and chemo pallor. She seems to have many friends who she chats with there and appears to know them outside of the gym.
We chat from time to time when we end up next to each other on the seated bikes. I know I have talked cancer with her regularly - because its something we have in common.
I hadn't talked to her since last fall sometime - before my knee surgery - until last week. We actually had a nice chat and caught up. She has been having some new side effects from her chemo and plans to talk to her oncologist at her next infusion to see if something can be done. She has been treated for lymphoma for the past ten years and this is her first real problem with neuropathy.
At the end of our conversation she said something to me about the fact that I am pretty much the only one there who 'gets it'.
Its that crazy cancer bond thing. But I don't even know her name. That doesn't matter because we both get it.
Showing posts with label support. Show all posts
Showing posts with label support. Show all posts
Sunday, March 4, 2018
Tuesday, December 12, 2017
Breast Cancer the Socially Acceptable Cancer
A breast cancer diagnosis is no fun. Actually any cancer diagnosis is no fun. We all know that. But maybe because of all the 'awareness', it is now more socially acceptable than other forms of cancer. Isn't that just weird? I think so.
Meanwhile, a woman in New Zealand was diagnosed with stage IV lung cancer and she wonders if breast cancer would be better because of the stigma surrounding smoking and lung cancer.
I think lung cancer is the only cancer which is regarded as 'self inflicted'. Face it, as normal human beings we associate lung cancer with smoking. But not all smokers get lung cancer and not all lung cancer patients were smokers. I think we look at lung cancer patients, even us former smokers, as people who have done it to themselves. They smoked and they got the lung cancer they 'deserved'.
The problem then is with the original cancer stigma, all cancer patients can feel isolated and alone. Which is no fun. But lung cancer with its added stigma makes it even worse. How to find the best support when you don't have the 'in' cancer?
First of all breast cancer patients seem to be all around us but lung cancer patients are fewer and harder to find. Then its got this additional stigma. I think all cancers should be equally treated with the same resources available for all.
Meanwhile, a woman in New Zealand was diagnosed with stage IV lung cancer and she wonders if breast cancer would be better because of the stigma surrounding smoking and lung cancer.
I think lung cancer is the only cancer which is regarded as 'self inflicted'. Face it, as normal human beings we associate lung cancer with smoking. But not all smokers get lung cancer and not all lung cancer patients were smokers. I think we look at lung cancer patients, even us former smokers, as people who have done it to themselves. They smoked and they got the lung cancer they 'deserved'.
The problem then is with the original cancer stigma, all cancer patients can feel isolated and alone. Which is no fun. But lung cancer with its added stigma makes it even worse. How to find the best support when you don't have the 'in' cancer?
First of all breast cancer patients seem to be all around us but lung cancer patients are fewer and harder to find. Then its got this additional stigma. I think all cancers should be equally treated with the same resources available for all.
Friday, November 17, 2017
Maybe I'm Lying To Myself
I can't tell you how many times I say things like 'I'm fine', 'I didn't sleep well last night', or other creative lies about how I am doing, physically and mentally. Sometimes these are lies, to myself and to those who I am speaking.
Over at The Mighty, which is an awesome website for people with health issues. I only found it recently but immediately signed up for their emails. (That says something in itself because I think I spend more time unsubscribing from email lists than anything else these days.)They say:
"The Mighty is a digital health community created to empower and connect people facing health challenges and disabilities."
Over at The Mighty, which is an awesome website for people with health issues. I only found it recently but immediately signed up for their emails. (That says something in itself because I think I spend more time unsubscribing from email lists than anything else these days.)They say:
"The Mighty is a digital health community created to empower and connect people facing health challenges and disabilities."
I think that criteria might include me. Today's email talked about how people dealing with depression or other mental health challenges by hiding behind some statements about how they really feel. And what they are hiding is that they need help. I do admit to dealing with depression and anxiety. But with my health issues, who wouldn't be depressed and anxious?
So I disagree with their statement that these only apply to those with mental issues but with physical ones as well. I use them all the time. I could add a few such as 'another day not pushing up the daisies'.... Their statements are:
But go read the full article here. And subscribe to The Mighty if you think it might help you too.
So I disagree with their statement that these only apply to those with mental issues but with physical ones as well. I use them all the time. I could add a few such as 'another day not pushing up the daisies'.... Their statements are:
1. “I’m not feeling well.”
2. “Well, I’m alive!”
3. “I didn’t sleep well last night.”
4. “Eh, you know.”
5. “It’s too much.”
6. “I’m exhausted.”
7. “I’m just out of it today.”
8. “I’m fine.”
9. “I’m bored.”
10. “I’m having an ‘off day.’”
11. “I’m hanging in there.”
12. “I’ve been listening to music a lot today.”
13. “I don’t want to be alone.”
14. “I’m all good, don’t worry about it.”
15. “I just can’t today.”
Thursday, July 7, 2016
Changing Stressors
As life goes on, my stressors have changed. Or maybe just the list gets rearranged. When I first started blogging, breast cancer was my primary concern. But then my health started to fall apart and things have changed.
At my breast cancer diagnosis, I quickly prepared myself to cope with breast cancer and I came up with a plan - support groups, etc. And I dealt with it.
Then I got gall stones and had my gall bladder out. Then I found out I should be seeing an endocrinologist about my thyroid cancer which made it harder for me to ignore it. When I went to one she sent me for an ultrasound which found some thing on the thyroid bed which we had to follow and it stressed me out for a while. Then my back started hurting. then I was diagnosed with fibromyalgia and rheumatoid... Somewhere in there I got a root canal too....
Where am I going with this? I had lunch with two breast cancer friends this week. One of them has multiple other current health issues. We were talking about them and she said that breast cancer was the last thing on her mind these days. She needs to get the rest of them fixed so she can back to worrying about breast cancer.
For me, my stressors now revolve between what is my current worst (usually health) problem. It can change daily. I sort of hang on during my roller coaster ride.
So how do I cope? I have created my own little support world. I burn off stress by going to the gym three times each week. I have a therapist I see monthly. I have a meds therapist (with the good drugs) to keep me sane. I have a weekly knitting group at a local cancer center. We all are coping with cancer. I also get together with my other 'unhealthy' friends and we hang out and talk bitch about our health concerns.
Since I can't be healthy, I just try to keep my sanity. If at all possible.
Wednesday, January 13, 2016
Advice for the newly diagnosed
Yesterday I got a message from a friend about a friend of a friend of a friend who was newly diagnosed with breast cancer, that unfortunately seems like it might be stage IV.
Both my friend and my friend's friend had been urging her to go to Dana Farber in Boston immediately for more doctors instead of staying where she is for treatment. They also admitted, while they knew a fair amount about cancer - because they have been there - they did not understand hormone receptors and other issues particular to breast cancer. My response was give her my contact information and I would be happy to help her understand her diagnosis, as much as I can, and where she can go to get more information and support.
Later I started thinking (that dangerous proposition again) about what would be my advice for the newly diagnosed.
Both my friend and my friend's friend had been urging her to go to Dana Farber in Boston immediately for more doctors instead of staying where she is for treatment. They also admitted, while they knew a fair amount about cancer - because they have been there - they did not understand hormone receptors and other issues particular to breast cancer. My response was give her my contact information and I would be happy to help her understand her diagnosis, as much as I can, and where she can go to get more information and support.
Later I started thinking (that dangerous proposition again) about what would be my advice for the newly diagnosed.
- Find information to help you understand your diagnosis, knowledge is power. Look for information online, in books (yes the old fashioned printed things), and from medical professionals and medical associations. Ask your doctor questions about your diagnosis and ask your doctor for resources for more information to help you understand your not-so-fun ailment.
There can be too much information to absorb at once. But I think if you start with your disease, the stage its at, and treatment options - big picture only - you can get a better idea of what you are facing. I mean do not get wrapped up in different chemotherapy options at this point. I think if you can get an idea of what you are facing in terms your disease and not get bogged down into the details, you can get a better grasp on your options.
Later, after you have had a chance to absorb your diagnosis and its implications you can then focus on the aspects of the different treatment options. - Find support to help you keep your sanity. You can find support in many places. I suggest asking your doctor's office to start but also ask any friends or family who have been faced with a similar diagnosis or are in the medical profession. They may be able to provide support but also may be able to help you find more information. Support is many things. It can be a support group - whether virtual or in person. It can be a network of friends who provide childcare, meals, and company. It can be someone to hold your hand while going through treatment or at the doctor's getting news.
- Focus on your sanity. When faced with a not-so-great diagnosis, you can easily go down the emotional roller coaster to hell in a hand basket and back again, over and over. It is okay to say, 'I'm not going to make a decision right now, I need to think about it'. When faced with treatment options, a good answer can be a question - how soon do I need to decide?.
- Stand your ground. Often well-intentioned friends and family members tell you what they think you should do - because their hair dresser's dog walker's cousin's next door neighbor had a similar disease twenty years ago and this is what happened to them. Smile and tell them thank you and walk away. Others will tell you which doctor to use, or why you should go to Germany for this new treatment, or other not so helpful information. Finally, there are those who will offer condolences as if they were at your funeral 'well, you have lived a good life' or 'it must be your time'. What are they talking about? You aren't dead.
Do not let these people near you, walk away from them. They are not helping you. They do not understand your predicament and listening to them will not help you. They will send you down that emotional roller coaster again. Focus on finding new friends who are supportive. - There is no such thing as a new 'normal' so forget about finding it. Those people who tell us about the so called new normal have no idea what they are talking about. All it does is stress us patients out as we try to find it. However you can still be who you are after diagnosis. You may find you are stronger than you thought you were. You will find out who your true friends really are.
I am not a doctor or a medical professional. I am only a professional patient who has been wandering the halls of medical disasters for decades. This is my advice. You may find that your advice to the newly diagnosed is different.
Wednesday, June 17, 2015
That cancer part that never goes away
Ask anyone with cancer and they will tell you the cancer part never really ever goes away. You can think, and dream, and ponder, and hope, and do anything you want. You get slashed, burned, and poisoned (surgery, radiation, and chemo) and deal with baldness, nausea, fatigue, weight gain, and more. You get countless scans, blood tests, and millions of doctors.
But it still hangs there in the background to wake you up in the middle of the night with the little 'what ifs'. Those cause the stress that does all sorts of bad things to your body (that might even cause the cancer to come back). And might cause overeating which causes weight gain (which might also cause the cancer to come back.)
You can also go to therapists and support groups and they give you advice on how to deal with your emotions, your feelings, and your fears. They have such great suggestions (my personal favorite is when they told me to avoid fatigue by putting on a terry cloth robe instead of toweling off to save the extra exertion.)
My cynical side often comes out when I am dealing with the cancer things. I am also waiting for that supposed cure that is getting closer and closer every day.
But it still hangs there in the background to wake you up in the middle of the night with the little 'what ifs'. Those cause the stress that does all sorts of bad things to your body (that might even cause the cancer to come back). And might cause overeating which causes weight gain (which might also cause the cancer to come back.)
You can also go to therapists and support groups and they give you advice on how to deal with your emotions, your feelings, and your fears. They have such great suggestions (my personal favorite is when they told me to avoid fatigue by putting on a terry cloth robe instead of toweling off to save the extra exertion.)
My cynical side often comes out when I am dealing with the cancer things. I am also waiting for that supposed cure that is getting closer and closer every day.
Wednesday, September 4, 2013
Privacy and support
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.
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.
Friday, June 21, 2013
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.
Tuesday, April 9, 2013
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.
Sunday, March 24, 2013
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.
Sunday, January 6, 2013
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.
Monday, November 12, 2012
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.
Monday, October 15, 2012
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.
Wednesday, May 16, 2012
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?
Wednesday, March 14, 2012
The forgotten population
Are young adults with cancer really the forgotten population? That's what the American Cancer Society tells us. They are also the ones who labeled us all 'survivors' which is another term I am not too fond of. They don't tell us why they are forgotten but they are labeled.
Young adults are diagnosed with cancer at much higher rates than pediatric cancers and have much lower survival rates. Its only in the last ten years that attention has been paid to their specific needs. I can understand both of these issues.
As children we are taken to the doctor by our parents and have regular well being check ups. Once we graduate high school and are out on our own, we aren't as motivated to go to the doctor as we are usually relatively healthy and don't feel the need for medical attention. Our mothers aren't making us our doctor appointments and taking us there. Besides they might cut into our social lives. Also, doctors are less likely to expect cancer in a young adult than in an older one because statistics tell us they aren't as likely to get cancer than older populations. And unexplained aches and pains can often be attributed to an active lifestyle.
Cancer was always for old people so support systems were not created for the younger adults who might be in need of them as well. Children with pediatric cancer live with their parents who provide a built in support system. As a young adult, age 19, at my first cancer diagnosis, support groups were for old people. No one talked about long term issues. Old people talked about, well, old people stuff - like their grandchildren or their arthritis. At 19, I wasn't interested in either topic.
Young adults have other issues - like dating, fertility, long term side effects, financial challenges - working a lower paying, entry level job and paying medical bills if they are lucky enough to have health insurance. Also, the big question - what is my life going to be like now that I have cancer? Doctors are used to talking to older people about these issues.
"People are really trying to establish their identities, their sense of themselves, their ideas about the world, their careers, families, intimate relationships. And those things are all going on at the same time as a young adult has cancer," said clinical psychologist Karen Fasciano, who runs the young adult program.
That can bring financial challenges and concerns about long-term side effects from treatment.
I personally know people who had cancer as young adults and then died as the result of long term side effects from treatment. This is a real fear. When the FDA approves a course of treatment, they look at the five year health of the people who received the treatment, but what about the thirty year health? Those studies don't exist. Just call us the guinea pigs
The young adults with a cancer diagnosis should not be forgotten. They are gaining their voice and making their presence known with organizations like www.imtooyoungforthis.org, also known as Stupid Cancer, or the Young Adult Cancer Conference held annually in Boston and taking place March 24 this year. Let's not forget the young adults with cancer. I was once a young adult with cancer and I can say we are people too.
Young adults are diagnosed with cancer at much higher rates than pediatric cancers and have much lower survival rates. Its only in the last ten years that attention has been paid to their specific needs. I can understand both of these issues.
As children we are taken to the doctor by our parents and have regular well being check ups. Once we graduate high school and are out on our own, we aren't as motivated to go to the doctor as we are usually relatively healthy and don't feel the need for medical attention. Our mothers aren't making us our doctor appointments and taking us there. Besides they might cut into our social lives. Also, doctors are less likely to expect cancer in a young adult than in an older one because statistics tell us they aren't as likely to get cancer than older populations. And unexplained aches and pains can often be attributed to an active lifestyle.
Cancer was always for old people so support systems were not created for the younger adults who might be in need of them as well. Children with pediatric cancer live with their parents who provide a built in support system. As a young adult, age 19, at my first cancer diagnosis, support groups were for old people. No one talked about long term issues. Old people talked about, well, old people stuff - like their grandchildren or their arthritis. At 19, I wasn't interested in either topic.
Young adults have other issues - like dating, fertility, long term side effects, financial challenges - working a lower paying, entry level job and paying medical bills if they are lucky enough to have health insurance. Also, the big question - what is my life going to be like now that I have cancer? Doctors are used to talking to older people about these issues.
"People are really trying to establish their identities, their sense of themselves, their ideas about the world, their careers, families, intimate relationships. And those things are all going on at the same time as a young adult has cancer," said clinical psychologist Karen Fasciano, who runs the young adult program.
That can bring financial challenges and concerns about long-term side effects from treatment.
I personally know people who had cancer as young adults and then died as the result of long term side effects from treatment. This is a real fear. When the FDA approves a course of treatment, they look at the five year health of the people who received the treatment, but what about the thirty year health? Those studies don't exist. Just call us the guinea pigs
The young adults with a cancer diagnosis should not be forgotten. They are gaining their voice and making their presence known with organizations like www.imtooyoungforthis.org, also known as Stupid Cancer, or the Young Adult Cancer Conference held annually in Boston and taking place March 24 this year. Let's not forget the young adults with cancer. I was once a young adult with cancer and I can say we are people too.
Friday, October 14, 2011
Another cancer statistic
I don't know what the real number is but coping with a friend or family member with cancer can either strengthen or sever their bonds. Sometimes gaps in a relationship can no longer be covered over while dealing with the more important life or death decisions and treatment of a cancer diagnosis.
It is not surprising to me. Cancer is almost as stressful for the family and friends as it is for the patient. I know of several cases of divorce or separation from online breast cancer message boards. Many of them were relationships that had been hanging on for years and with the added strain of cancer causes the relationship to fall apart. A divorce can be another unwanted cancer side effect.
It is difficult to think that in the middle of a medical disaster like cancer that sometimes the expected emotional support from a friend or family member just isn't there. Boston Red Sox pitcher John Lackey is divorcing his wife while she is in treatment for cancer. I don't think he deserves any blame in this. Its not his fault that his marriage fell apart at the same time his wife was in cancer treatment.
Relationships fall apart for different reasons all the time. A cancer diagnosis can be the last straw that ends a relationship. Also if a friend or family member cannot cope with the fact that someone they care about has cancer and they flee, the relationship will end. The patient is forced to cope with their medical adventures. Any other person is not forced to cope and sometimes can't and the relationship ends. I have friends who are no longer friends as a result of their lack of support.
I was lucky in that my husband was there for me through treatment. I have friends who were alone - one woman went to chemo by herself because she had no one to go with her. During treatment my husband was allowed to be there for everything but was not allowed to see my weight on a scale (the nurses were very cooperative with this). I think our relationship got stronger as a result.
But many are not as lucky. But neither party deserves any blame for the divorce. John Lackey should not be blamed. I find it harsh when the media or others blame someone for a divorce in the middle of a medical disaster. Perhaps the relationship couldn't handle the added stress. But there is no blame here. It just another side effect of cancer - the gift that keeps on giving.
It is not surprising to me. Cancer is almost as stressful for the family and friends as it is for the patient. I know of several cases of divorce or separation from online breast cancer message boards. Many of them were relationships that had been hanging on for years and with the added strain of cancer causes the relationship to fall apart. A divorce can be another unwanted cancer side effect.
It is difficult to think that in the middle of a medical disaster like cancer that sometimes the expected emotional support from a friend or family member just isn't there. Boston Red Sox pitcher John Lackey is divorcing his wife while she is in treatment for cancer. I don't think he deserves any blame in this. Its not his fault that his marriage fell apart at the same time his wife was in cancer treatment.
Relationships fall apart for different reasons all the time. A cancer diagnosis can be the last straw that ends a relationship. Also if a friend or family member cannot cope with the fact that someone they care about has cancer and they flee, the relationship will end. The patient is forced to cope with their medical adventures. Any other person is not forced to cope and sometimes can't and the relationship ends. I have friends who are no longer friends as a result of their lack of support.
I was lucky in that my husband was there for me through treatment. I have friends who were alone - one woman went to chemo by herself because she had no one to go with her. During treatment my husband was allowed to be there for everything but was not allowed to see my weight on a scale (the nurses were very cooperative with this). I think our relationship got stronger as a result.
But many are not as lucky. But neither party deserves any blame for the divorce. John Lackey should not be blamed. I find it harsh when the media or others blame someone for a divorce in the middle of a medical disaster. Perhaps the relationship couldn't handle the added stress. But there is no blame here. It just another side effect of cancer - the gift that keeps on giving.
Friday, October 7, 2011
Researching online
I know I have written about Dr. Google and his flaws before. Dr. Google can tell you that you have ten terminal ailments along with psoriasis, athletes foot, head lice and bed bugs when all you have is a mosquito bite. Dr. Google can be very scary. Dr. Google is not a real doctor.
There is so much medical information on line and it covers the gamut of good solid information to complete quackery and scams plus a lot of well meaning people who are sure that what worked for them will definitely work for you. You need to sort through what is there and figure out what to believe and what to ignore. My personal recommendation is to stick with the credible sites of WebMD, Mayo Clinic, BreastCancer.org, American Cancer Society, possibly your own hospital's web page etc. I would skip any website trying to sell you something that will cure you (or offers you a share in a Nigerian inheritance). Yes you can get lots of good solid information online. And an educated patient is a comfortable position to be in.
Online message boards can provide a lot of support from others coping with the same ailment and should be included in your online research. If you read to what the patients say you can learn how to cope with side effects and the ups and downs of treatment. Its not that patients are doctors and can give you advice but the general consensus you get from what everyone else is going through offers a different type of information. A group consensus can be just as helpful as online medical advice.
The New York Times published an article earlier this week on this topic. The author feels his life was saved by what he learned online. He kept reading about the same doctor for his type of cancer. He ended up going to see him a thousand miles away and felt that this doctor gave him the life saving course of treatment. (One comment on the article is that it recommends going to ACOR.org for help - that front page hasn't been updated since 2002 and it is full of broken links so I think you can skip it.)
I know I have learned a lot on line from message boards in addition to receiving (and giving I hope) a lot of support. They definitely helped balance out the ups and downs of cancer diagnosis and treatment. They also encouraged me to ask more questions of my doctors and educate myself so I was more comfortable with my course of treatments.
There is so much medical information on line and it covers the gamut of good solid information to complete quackery and scams plus a lot of well meaning people who are sure that what worked for them will definitely work for you. You need to sort through what is there and figure out what to believe and what to ignore. My personal recommendation is to stick with the credible sites of WebMD, Mayo Clinic, BreastCancer.org, American Cancer Society, possibly your own hospital's web page etc. I would skip any website trying to sell you something that will cure you (or offers you a share in a Nigerian inheritance). Yes you can get lots of good solid information online. And an educated patient is a comfortable position to be in.
Online message boards can provide a lot of support from others coping with the same ailment and should be included in your online research. If you read to what the patients say you can learn how to cope with side effects and the ups and downs of treatment. Its not that patients are doctors and can give you advice but the general consensus you get from what everyone else is going through offers a different type of information. A group consensus can be just as helpful as online medical advice.
The New York Times published an article earlier this week on this topic. The author feels his life was saved by what he learned online. He kept reading about the same doctor for his type of cancer. He ended up going to see him a thousand miles away and felt that this doctor gave him the life saving course of treatment. (One comment on the article is that it recommends going to ACOR.org for help - that front page hasn't been updated since 2002 and it is full of broken links so I think you can skip it.)
I know I have learned a lot on line from message boards in addition to receiving (and giving I hope) a lot of support. They definitely helped balance out the ups and downs of cancer diagnosis and treatment. They also encouraged me to ask more questions of my doctors and educate myself so I was more comfortable with my course of treatments.
Thursday, July 14, 2011
Living with cancer
I follow a few (billion) cancer sites. The most helpful ones send me emails telling me what is going on as opposed to the ones I am supposed to remember to go and read (excuse me but chemo brain does not allow that kind of thought process regularly - and no, I see no reason to give up the chemo brain excuse anytime in the next decade or so). This morning I received an email where someone asked: "Can you give tips to becoming a successful survivor?"
At first it seems a tad naive. But then I started to think (a scary prospect) and came up with some input.
First of all, skip the survivor business. To me it is a label and has some negative overtones that imply illness and eventual death. You want to be a person who coincidentally has a cancer diagnosis behind them and is now living with cancer (because, no it doesn't go away).
Second, there is no magic panacea, one size fits all solution here. You need to find out what works for you. The best advice I can give is get off your butt and start trying to figure this out. Do you want to write a book or a blog about this? Do you want a support group or would you prefer a therapist, or both? Everybody has a different combination of support that they need to cope with being in treatment. The option of not needing support I think is non-existent. We all need some kind of support at this time. Is someone going to chemo with you or do you want more than that? You have made the first step in this process by simply asking.
Then, now that you have been given a wake up call on your own mortality, what have you always wanted to do but never did, never found the time? It is now the time to do it. Do you want to save the world or merely hike the Grand Canyon? Do you want to give back and help others - read to the blind, bring snacks to chemo patients, or walk around the world for cancer awareness? Give some thought to what you want to do and try some different things.
Eventually you will find that there is life after cancer. You aren't surviving. You are living.
At first it seems a tad naive. But then I started to think (a scary prospect) and came up with some input.
First of all, skip the survivor business. To me it is a label and has some negative overtones that imply illness and eventual death. You want to be a person who coincidentally has a cancer diagnosis behind them and is now living with cancer (because, no it doesn't go away).
Second, there is no magic panacea, one size fits all solution here. You need to find out what works for you. The best advice I can give is get off your butt and start trying to figure this out. Do you want to write a book or a blog about this? Do you want a support group or would you prefer a therapist, or both? Everybody has a different combination of support that they need to cope with being in treatment. The option of not needing support I think is non-existent. We all need some kind of support at this time. Is someone going to chemo with you or do you want more than that? You have made the first step in this process by simply asking.
Then, now that you have been given a wake up call on your own mortality, what have you always wanted to do but never did, never found the time? It is now the time to do it. Do you want to save the world or merely hike the Grand Canyon? Do you want to give back and help others - read to the blind, bring snacks to chemo patients, or walk around the world for cancer awareness? Give some thought to what you want to do and try some different things.
Eventually you will find that there is life after cancer. You aren't surviving. You are living.
Sunday, May 22, 2011
Its 'Insert Event Here' Season and the money goes where?
Every spring seems to explode with fundraising events, everywhere. Relay for Life from the American Cancer Society, American Diabetes Association, Komen Walk, Avon Walk, Pan Mass Challenge, local hospital 5K walk, etc. There are walks, rides, spinathons for everything under the sun these days. These are great events where funds are raised for awareness, a charity, or any number of other causes. They get people out to help others.
I have participated in a variety of these events in the past, volunteered with others, and helped coordinate others. They take a lot of effort to put together. They do a lot of good. But the question is where does the money go?
Chances are if its a national organization the money is going to help for a national awareness, research program, or something else outside of your community. Even at some local events the money ends up being spent elsewhere.
I think we always want to help our friends in their efforts to raise money. But we always should ask ourselves, where does the money go? Some large non profits can be thought of as fundraising machines. They have fundraising down pat. Their annual events raise a lot of money and do a lot of good.
But there are lots of smaller organizations right in your home town that shouldn't be overlooked as well. They can be a local no-kill shelter, support group program, children's bereavement center, etc. These types of local groups often are just as much in need of funds as the national organizations but don't have the budgets to be as organized as the national ones. As a result they are often overlooked by donors who get bombarded by the national organizations and skip the local ones.
Being a locavore means eating locally grown foods. How about trying to be a localdonor and giving locally instead of nationally to help the smaller organizations?
I have participated in a variety of these events in the past, volunteered with others, and helped coordinate others. They take a lot of effort to put together. They do a lot of good. But the question is where does the money go?
Chances are if its a national organization the money is going to help for a national awareness, research program, or something else outside of your community. Even at some local events the money ends up being spent elsewhere.
I think we always want to help our friends in their efforts to raise money. But we always should ask ourselves, where does the money go? Some large non profits can be thought of as fundraising machines. They have fundraising down pat. Their annual events raise a lot of money and do a lot of good.
But there are lots of smaller organizations right in your home town that shouldn't be overlooked as well. They can be a local no-kill shelter, support group program, children's bereavement center, etc. These types of local groups often are just as much in need of funds as the national organizations but don't have the budgets to be as organized as the national ones. As a result they are often overlooked by donors who get bombarded by the national organizations and skip the local ones.
Being a locavore means eating locally grown foods. How about trying to be a localdonor and giving locally instead of nationally to help the smaller organizations?
Monday, May 2, 2011
More on helping if you know someone with cancer
As a follow up to yesterday's post on helping people with cancer. What can you do to help? How can you help? While a cancer or other diagnosis doesn't mean life is over, it can make things difficult.
I assume everyone has the best intentions and wants to bring over a meal or something to help but with cancer, a casserole may not be appreciated. If the person cooks for their large family, casseroles may be appreciated but if a smaller family or someone else cooks, I would definitely ask. And as a reality check, how many casseroles can one use at a given time? While in chemo, food can lose its appeal. I don't like shrimp any more. While in chemo, scallions made me nauseous.
I think the best thing to do is ask them, their spouse or other family member how you can help. Maybe they don't need food but need someone to help get the kids to school or be there for them after school so both husband and wife can go to treatments together. Or even help getting the kids to or from sports or other events. Or maybe they need rides to or from treatment. Or maybe just picking up prescriptions to getting groceries for them. Or maybe help with laundry or house cleaning or more. Sometimes, they just need people to stop by and chat since they aren't up to going out and socializing.
When I was in treatment, I had a total of 16 chemo rounds over five months. The first four were pretty awful and my husband made it to all of them. But there got to be a limit to how much time he could take off from work. My last 12 treatment were weekly doses of Taxol and I started to feel better so sometimes when he couldn't stay, he would drop me off and my parents would pick me up. That worked for me but other people may not have the luxury of local family members to help.
I ran across another cancer blogger recently and on her blog she has posted a page on her blog about how to help her which basically sums it all up. The little things in life like going to the grocery store or doing laundry can get very complicated.
When you have cancer or other nasty ailments, life goes on and you have to cope with your life as well as your diagnosis. Help is always appreciated.
I assume everyone has the best intentions and wants to bring over a meal or something to help but with cancer, a casserole may not be appreciated. If the person cooks for their large family, casseroles may be appreciated but if a smaller family or someone else cooks, I would definitely ask. And as a reality check, how many casseroles can one use at a given time? While in chemo, food can lose its appeal. I don't like shrimp any more. While in chemo, scallions made me nauseous.
I think the best thing to do is ask them, their spouse or other family member how you can help. Maybe they don't need food but need someone to help get the kids to school or be there for them after school so both husband and wife can go to treatments together. Or even help getting the kids to or from sports or other events. Or maybe they need rides to or from treatment. Or maybe just picking up prescriptions to getting groceries for them. Or maybe help with laundry or house cleaning or more. Sometimes, they just need people to stop by and chat since they aren't up to going out and socializing.
When I was in treatment, I had a total of 16 chemo rounds over five months. The first four were pretty awful and my husband made it to all of them. But there got to be a limit to how much time he could take off from work. My last 12 treatment were weekly doses of Taxol and I started to feel better so sometimes when he couldn't stay, he would drop me off and my parents would pick me up. That worked for me but other people may not have the luxury of local family members to help.
I ran across another cancer blogger recently and on her blog she has posted a page on her blog about how to help her which basically sums it all up. The little things in life like going to the grocery store or doing laundry can get very complicated.
When you have cancer or other nasty ailments, life goes on and you have to cope with your life as well as your diagnosis. Help is always appreciated.
Subscribe to:
Posts (Atom)