No one likes to get bad news. There are more jokes out there about good news vs. bad news. I am talking about getting bad medical news.
Some people never want to hear the bad news. I have a friend who when she received her breast cancer diagnosis, told her doctors she didn't want to know anything else - staging, tumor size, node involvement, nothing. It was her way of coping. A few years later she did get the details when she was ready for them.
It is my understanding that doctors often get this request - not to tell any bad news. But what is the definition of what is bad vs. what is good? There are more jokes about this as well (but I have chemobrain/RA fog and my brain can't remember them right now).
Its all relative. Take the example of a cancer patient who goes for a chest x-ray which shows a 2 cm tumor. To most people that would be bad news. But if the tumor used to be 4 cm and has shrunk as a result of treatment, 2 cm is good news.
Using the example in the article I referenced, what if the patient needs the bad news to make decisions regarding their treatment. Are they going to blindly follow the suggestions of their medical team? Some people do this anyway but wouldn't it be smarter to be fully informed?
Sometimes my life feels like it is a stream of bad medical news. This is why I have a therapist, well one of the many reasons. I am never the patient who has clear medical tests and they always want to be sure...
Its the coping with the bad news that is the hard part. This is probably why some people say they don't want the bad news. That way they don't have to cope. Ignorance can be bliss.
Showing posts with label coping. Show all posts
Showing posts with label coping. Show all posts
Warning - I have been thinking!
I'm sorry I don't mean to do that, think that is, very often. It often gets me into trouble in one way or another.
I wrote a post the other day about how time flies and how I am coping better these days - or so it seems. Being sensitive and thoughtful (hah!) I decided it was time for some inner-contemplation on my developing coping skills.
First, am I any healthier than I was six years ago? Absolutely not. I have so many new ailments that are the chronic kind that follow me around wherever I go, I think I have lost count. I definitely have many more doctors and doctor appointments (these seem to go hand in hand) than six years ago.
I have many more surgical scars. I have the kind of scars where they went back in a second time to make sure the scar is going to stick around a long time. I have had the kind of surgery which left not one but four scars. I am going to start playing connect the dots with my scars and see what I can draw...
Back to coping, I have come up with a couple little reasons and a couple bigger reasons.
On the little reasons, I see a monthly therapist. I didn't start therapy until I was going through radiation. I did go to support groups but therapy might have helped me sooner.
I also believe in 'better living through chemistry' where I take an antidepressant daily because as my therapist puts it "I am in constant mourning for my health". This might not be a problem if my doctors stopped finding new ailments.Maybe if I stopped going to see my doctors they would stop finding new ailments.... No bad idea.
Bigger reasons why I think I am doing better. First of all for over the past two years, I have been going to the gym regularly. I used to belong to a gym where I would walk on the treadmill and look at all the other equipment and never know how to use it and I went for daily walks. I broke down a couple of years ago and joined the expensive gym for dilapidated people where they have worked with me.
Now even though my health has clearly gone down hill, I am physically in better shape with muscles and things like that. I have retained a fair amount of flexibility and have a good sense of balance so I feel less clumsy. All this makes me feel 'healthy'. I can pick things up without straining. I don't feel like I am going to trip over myself.
Finally, I think my coping skills have improved. I don't let myself get all worked up over the little things any more. Life is too short to let the little things bug me. I save that for stupid customer service people or bad drivers on the highway. Most of the rest of it, I have learned to let it run off my back. I mean I have heard more medical ailments, there are not that many new ones left that might scare me at this point.
Just or the hell of it last week I decided to see if anyone would offer me life insurance at this point. The answer I have found is not for 'any reasonable amount of money'. So maybe I am seeing the humor in things as well. That is coping too. And thinking...
I wrote a post the other day about how time flies and how I am coping better these days - or so it seems. Being sensitive and thoughtful (hah!) I decided it was time for some inner-contemplation on my developing coping skills.
First, am I any healthier than I was six years ago? Absolutely not. I have so many new ailments that are the chronic kind that follow me around wherever I go, I think I have lost count. I definitely have many more doctors and doctor appointments (these seem to go hand in hand) than six years ago.
I have many more surgical scars. I have the kind of scars where they went back in a second time to make sure the scar is going to stick around a long time. I have had the kind of surgery which left not one but four scars. I am going to start playing connect the dots with my scars and see what I can draw...
Back to coping, I have come up with a couple little reasons and a couple bigger reasons.
On the little reasons, I see a monthly therapist. I didn't start therapy until I was going through radiation. I did go to support groups but therapy might have helped me sooner.
I also believe in 'better living through chemistry' where I take an antidepressant daily because as my therapist puts it "I am in constant mourning for my health". This might not be a problem if my doctors stopped finding new ailments.Maybe if I stopped going to see my doctors they would stop finding new ailments.... No bad idea.
Bigger reasons why I think I am doing better. First of all for over the past two years, I have been going to the gym regularly. I used to belong to a gym where I would walk on the treadmill and look at all the other equipment and never know how to use it and I went for daily walks. I broke down a couple of years ago and joined the expensive gym for dilapidated people where they have worked with me.
Now even though my health has clearly gone down hill, I am physically in better shape with muscles and things like that. I have retained a fair amount of flexibility and have a good sense of balance so I feel less clumsy. All this makes me feel 'healthy'. I can pick things up without straining. I don't feel like I am going to trip over myself.
Finally, I think my coping skills have improved. I don't let myself get all worked up over the little things any more. Life is too short to let the little things bug me. I save that for stupid customer service people or bad drivers on the highway. Most of the rest of it, I have learned to let it run off my back. I mean I have heard more medical ailments, there are not that many new ones left that might scare me at this point.
Just or the hell of it last week I decided to see if anyone would offer me life insurance at this point. The answer I have found is not for 'any reasonable amount of money'. So maybe I am seeing the humor in things as well. That is coping too. And thinking...
Being social can help breast cancer outcomes
So even if you feel like crap from chemo and want nothing but to sit in a corner and stare vacantly out the window, be social. A new study (because all those researchers need to keep busy) recently found that women with breast cancer who are social - have better social and community ties - have better outcomes and handle the disease and side effects better.
What did I do at my diagnosis? I started a blog, then joined two in person support groups, joined Twitter, then cancer message boards, then Crazy Sexy Cancer, then Facebook, then so many other online communities I can no longer remember them, never mind keep up with them.
I started meeting other breast cancer people in person through my support group and other activities. I made lots of cancer friends who are now not just cancer friends.
There were many days when I was happy to sit in a corner and stare vacantly out the window but I think I did okay.
What did I do at my diagnosis? I started a blog, then joined two in person support groups, joined Twitter, then cancer message boards, then Crazy Sexy Cancer, then Facebook, then so many other online communities I can no longer remember them, never mind keep up with them.
I started meeting other breast cancer people in person through my support group and other activities. I made lots of cancer friends who are now not just cancer friends.
There were many days when I was happy to sit in a corner and stare vacantly out the window but I think I did okay.
How we cope
I have always said that unless you have walked the walk, you can't talk the talk. If you haven't had cancer, you have no idea what it is like - you can't shouldn't even pretend to get it. But those of us who have been there know.
So that opens us up to all the emotions of the cancer diagnosis and treatment process again and again as we hear stories about others.
A friend called me yesterday because a friend of hers who just gave birth to a new baby two weeks ago, was just diagnosed at stage IV for a recurrence of a rare childhood cancer. There aren't a lot of treatment options - either chemo or surgery - available for her. She doesn't have a full diagnosis/prognosis yet but it doesn't look good. Its a very sad story that she will probably not be around to raise her child.
So those of us who have walked the walk have a good sense of what the treatment will be like. It won't be fun. It doesn't sound like it will have a good outcome either.
But those of us who have walked the walk at every story we hear our emotions take over again and open up and send us down that road again. Now that we have learned to cope with our cancer story, we then need to learn to cope with someone else's story again. Its an ongoing process.
My therapist tells me I am in a chronic state of mourning because of my continually downward spiraling health issues. But as I pointed out to my friend yesterday its like with each story we hear, we need to go through the five stages of coping/grieving/mourning again.
Is it easier each time we go through this? Not really. I think we just adapt our coping mechanisms a little more.
So that opens us up to all the emotions of the cancer diagnosis and treatment process again and again as we hear stories about others.
A friend called me yesterday because a friend of hers who just gave birth to a new baby two weeks ago, was just diagnosed at stage IV for a recurrence of a rare childhood cancer. There aren't a lot of treatment options - either chemo or surgery - available for her. She doesn't have a full diagnosis/prognosis yet but it doesn't look good. Its a very sad story that she will probably not be around to raise her child.
So those of us who have walked the walk have a good sense of what the treatment will be like. It won't be fun. It doesn't sound like it will have a good outcome either.
But those of us who have walked the walk at every story we hear our emotions take over again and open up and send us down that road again. Now that we have learned to cope with our cancer story, we then need to learn to cope with someone else's story again. Its an ongoing process.
My therapist tells me I am in a chronic state of mourning because of my continually downward spiraling health issues. But as I pointed out to my friend yesterday its like with each story we hear, we need to go through the five stages of coping/grieving/mourning again.
Is it easier each time we go through this? Not really. I think we just adapt our coping mechanisms a little more.
No need for a stiff upper lip
A recent study in the UK shows that one of the reasons that the reason for the higher cancer death rates is that people are reluctant to go to their doctor with symptoms. Their reasons are that they do not want to waste their doctor's time or they were embarrassed to tell someone about their symptoms.
If you are concerned about something you need to tell your doctor and not wait. I use the two week rule myself. Most recommendations will tell you if something is not better in a week to call your doctor.
I can understand sometimes its embarrassing to tell someone about something very personal. You can always write your doctor a note.
There is no reason to delay going to the doctor. Your body is very important and you need to treat it appropriately. What is a good reason for not going to the doctor? I can't think of one. Trust me, I am the professional patient with more ailments that you can imagine and I hate going to the doctor but I do because it makes me feel better in the end.
If you are concerned about something you need to tell your doctor and not wait. I use the two week rule myself. Most recommendations will tell you if something is not better in a week to call your doctor.
I can understand sometimes its embarrassing to tell someone about something very personal. You can always write your doctor a note.
There is no reason to delay going to the doctor. Your body is very important and you need to treat it appropriately. What is a good reason for not going to the doctor? I can't think of one. Trust me, I am the professional patient with more ailments that you can imagine and I hate going to the doctor but I do because it makes me feel better in the end.
Dealing with health problems
With a nasty medical diagnosis, such as cancer, chronic illness or pain, one is left with a few questions which a medical professional cannot answer. You get to figure them out for yourself because you have instantly received an advanced degree in being human along with your diagnosis. There are five key questions to grapple with. I did not make this up I stole borrowed from the RA Guy and from here. (I like the RA Guy, he gives lots of good advice to me.)
The questions are:
1. Do we talk openly about our health problems or keep them private?
I think this is a personal decision. If you are Robin Roberts and can get the best medical care and organize a million supportive fans in no time, maybe talking publicly will work. It also means opening yourself up to a million questions and stupid requests. "Is that your hair or a wig?" "I'm sure if you take a nap you can come to my party and stay until midnight."
There is a middle of the road answer you can do what I do. Write a blog and send everyone who asks questions to read your blog. That way you can also control the flow of information. Whatever works for you. I do not recommend keeping quiet because talking about it may help with stress.
However I would be cautious in talking about your health in the work place. It is no business what your health ailments. You can just say you have health issues and need to alter your schedule to go to doctor appointments.
2. Do we ignore a new symptom or do we call our doctor?
That fine line between hypochondria and ignorant bliss. I have adopted the two week rule for myself. If it still is a problem for two weeks I start taking notes, consider the severity and then debate the doctor call. Sometimes I do a little research and find out my new symptom is part of my new diagnosis. I did not know people with fibro get headaches. All of a sudden I have been getting headaches, I now write them off to fibro and ignore them. Unless they make me cranky.
3. Do we follow our doctor’s treatment plan or do we try alternative and unconventional therapies?
Hmmm... common sense tells me to do whatever seems will help within any limits my doctors have given me. I am not about to try yoga, no matter what people tell me, because my doctor has expressly forbidden anything that involves twisting my back and holding poses. I did acupuncture without any other consent. I just had to get over the icky needle thing first. I am very hesitant to take any herbals because of the number of medications I am on and how many problems I have had with interactions.
4. Do we push our bodies to the limit or do we play it safe?
That's an easy one for me. If I do too much I spend a day in bed. I have a new exercise plan that I can get through my entire workout and still function as a normal human being with is my goal these days. My life is carefully scheduled to allow or down time.
5. Should we fight aggressively to retain our health or should we accept our fate?
There is always hope. Never give up! I can't say anything else on this.
The questions are:
1. Do we talk openly about our health problems or keep them private?
I think this is a personal decision. If you are Robin Roberts and can get the best medical care and organize a million supportive fans in no time, maybe talking publicly will work. It also means opening yourself up to a million questions and stupid requests. "Is that your hair or a wig?" "I'm sure if you take a nap you can come to my party and stay until midnight."
There is a middle of the road answer you can do what I do. Write a blog and send everyone who asks questions to read your blog. That way you can also control the flow of information. Whatever works for you. I do not recommend keeping quiet because talking about it may help with stress.
However I would be cautious in talking about your health in the work place. It is no business what your health ailments. You can just say you have health issues and need to alter your schedule to go to doctor appointments.
2. Do we ignore a new symptom or do we call our doctor?
That fine line between hypochondria and ignorant bliss. I have adopted the two week rule for myself. If it still is a problem for two weeks I start taking notes, consider the severity and then debate the doctor call. Sometimes I do a little research and find out my new symptom is part of my new diagnosis. I did not know people with fibro get headaches. All of a sudden I have been getting headaches, I now write them off to fibro and ignore them. Unless they make me cranky.
3. Do we follow our doctor’s treatment plan or do we try alternative and unconventional therapies?
Hmmm... common sense tells me to do whatever seems will help within any limits my doctors have given me. I am not about to try yoga, no matter what people tell me, because my doctor has expressly forbidden anything that involves twisting my back and holding poses. I did acupuncture without any other consent. I just had to get over the icky needle thing first. I am very hesitant to take any herbals because of the number of medications I am on and how many problems I have had with interactions.
4. Do we push our bodies to the limit or do we play it safe?
That's an easy one for me. If I do too much I spend a day in bed. I have a new exercise plan that I can get through my entire workout and still function as a normal human being with is my goal these days. My life is carefully scheduled to allow or down time.
5. Should we fight aggressively to retain our health or should we accept our fate?
There is always hope. Never give up! I can't say anything else on this.
Stress is evil
So yesterday I had a bad day. It was compounded by stress. This was my day.
Today will not help. I have an 8am conference call to work on a client's database. At 9am a contractor is showing up to fix our basement door (so its no longer a burglar's dream). I also have to get out a mailing for work, work on our Christmas cards, and go to the grocery store. I was supposed to go out to dinner as well but I declined.
I think I am not coping well because I am tired, I get tired easily, and pain seems to be dominating my life which is living with fibromyagia. I need better ways to cope to reduce stress. Stress sucks. Maybe I need more naps.
- I went to work and needed to fix an iPad (and I've never used one before).
- I needed to fix two co-workers easy email issues.
- I needed to fix another co-workers very difficult email issue.
- At one point I stood up from my chair, tripped, caught myself on the next cubicle wall which gave me a jolt that hurt my hip and back and shoulder.
- I never got ANY of my work done.
- I left work and went to the gym where my hip and shoulder really hurt so I went home.
- I had cheese and crackers for dinner.
- I had a box of stuff that I bought on line ready to be taped up and returned with all the paperwork and my husband thought he was being helpful and unpacked the box, threw out the packing materials and paperwork.
- I went to a meeting which was full of dissent and disagreements.
- I came home and was VERY stressed out, not coping well with the stress at all.
Today will not help. I have an 8am conference call to work on a client's database. At 9am a contractor is showing up to fix our basement door (so its no longer a burglar's dream). I also have to get out a mailing for work, work on our Christmas cards, and go to the grocery store. I was supposed to go out to dinner as well but I declined.
I think I am not coping well because I am tired, I get tired easily, and pain seems to be dominating my life which is living with fibromyagia. I need better ways to cope to reduce stress. Stress sucks. Maybe I need more naps.
Changing through cancer
[Note this is some what of a girly topic so go away if you might be offended.] Yesterday I got together with some old friends. Meaning people I have know for 25-30 years. They were talking about menopause issues - hot flashes, weight gain, etc. They are all coping with the symptoms naturally. If only I was in the same boat as them. I opted not to speak up as my medical history makes me very different. They were complaining about the past year or two.
It made me realize how my medical issues have changed me. I had a hysterectomy due to fibroids in 2005. It left me with one ovary. Chemotherapy made that ovary inactive so I had the luxury of going through chemopause which takes care of any remaining chance to go through menopause naturally. Then you add the wonderful cancer hormonal treatments that add hot flashes, weight gain, and all sorts of other fun things to the mix, chemically as opposed to naturally. And its been more than five years....
One friend pulled out a book on coping with menopause that had been recommended to her. There was a chapter on the thyroid and what it controls and how it can change as you age. I can skip that chapter as I don't have one and haven't for decades. Most of the other chapters talked about how your body changes and how you can cope with the changes. Mine menopause was forced and dragging on and on.
As I was leaving one friend said 'I hope your back gets better'. That left me feeling that they really do not understand me. One, my back will not get better and I have been repeating this for years, and two, my back is not my primary generator of pain these days. I had brought up the fact that I have both RA and fibro earlier in the day but evidently it did not connect as being limitations that I cope with on a daily basis now.
Driving home I started thinking (which is particularly dangerous in the realm of multitasking to think and drive). These are my friends who I have known for decades. None of them read my blog, two of them are on Facebook and update about every few months, they infrequently email as well. These are my primary means of communication these days. So if they do not participate, we are not connecting very frequently at all.
We get together five times a year for our birthdays. We also get together in different sub groups at different times but I can go for weeks and months without communicating. A good part of it is me. It is more and more difficult for me to be able to get out and do things as much as I used to. This is not due to cancer but due to my back, RA, and fibro.
But how much did my cancers change me, particularly breast cancer due to its recency? I have significantly less tolerance for idiots, late people, and foolish wastes of time. My health is front and center in my life. Without cancer, would I be coping differently? I hope so.
Coping, cooperating, and crankiness
I have had enough of serious blog posts on financial stuff and now am back to my normal (whatever that may be) level of zaniness in the crazy world of my health.
Monday I had a regular six month check up with the dentist. Something I hate/fear/detest more than almost anything - its right up there with those little medical adventures that might make me feel a 'twinge'. At the appointment, it was decided that I need two bonds which are relatively painless and quick and could help prevent future issues. I am all about my long term health (or what is left of it) so opted to have them. It was also pointed out that I have two older fillings on a single tooth which are stressing the tooth and cause it to start to crack. It was also decided it was in my best interest for what's left of my long term health to have them removed and replaced with a new white filling. Lo and behold, the dentist actually had a cancellation for yesterday morning at 830. I rearranged my schedule for yesterday morning and went for the appointment.
That was one of the worst dental appointments I have had in decades. First, I needed Novocaine on the top right and top left front, as well as the middle top right. Novocaine went in and the dentist got called away to check on another patient. The assisting tech decided to be proactive and put the clamp on my tooth to get ready for the rubber dam. Well that hurt/was uncomfortable/made me cringe and my stomach hurt. Not a good start. She took it off and tried a second one. The dentist returned and said to wait until the last minute. That's okay I was stressed already.
Then the old fillings took forever to drill off. Even the dentist said it did. She started explaining in detail that I didn't need. When she was done drilling, then she started putting in little wedges to rebuild my tooth and held it all in place with another clamp. She then moved on to the bonds but the drilling fun had taken so long I needed more novocaine. Then I went to work, with a stressed out stomach, feeling like I had a frozen face. When I got to work, I was told I didn't look very good.
That was on top of the continuing fight to get my new (old) pain patches for my RA/fibro. I was on the 5mcg pain patches but my doctor thought I should increase my dose to 10mcg because of my pain levels. The 5mcg ones I got from the mail order pharmacy for 3 months at a time with a paltry co-pay of $95. My doctor sent in a new prescription for the 10 mcg which showed up in a one month increment for the same paltry co-pay. I called the mail order pharmacy and was told they needed a new 90 day prescription. Then I called my doctors office and asked them to change the prescription to a 90 day supply.
Then I had an allergic reaction to thedamn pain patches. When I took off the patch, I had a perfect rectangle of rash which lined up exactly with the patch's adhesive. I called my doctors office again and asked them what were my options and was told to either try going with out the patches (which doesn't work unless I want to live on pain pills) or putting cortisone cream on my skin ahead of time to prevent the reaction.
I waited for thedamn rash to go away and tried again with the cortisone lotion. So far its working. Then another prescription showed up in the mail with its paltry $95 co-pay for one month of patches. And a note that said state law prevents them from sending more than 30 days at a time. I called the pharmacy again and was told it was by law but they weren't sure if why I had received 90 day supply of the 5mcg patches. I called my doctor's office again and asked for the 5mcg dose in a 90 day supply. Then I received another email saying a new prescription had been processed and will be sent to me. All I know is that it will have a $95 co-pay (that would be #3 this month) but I hope its for 3 months of the right patches that won't give me a rash.
In the meantime, back at the ranch so to speak, I have been coping with increasing pain, fatigue - where getting into my pjs at 7 pm sounds like a good idea, and trying to live a 'normal' life.
All this has led to some crankiness. And with my new RA meds, I have had to give up alcohol so I can't even have a glass of wine to cope. Crankiness is ensuing because the scale has not cooperated in making me a skinny alcohol free pain patient.
Monday I had a regular six month check up with the dentist. Something I hate/fear/detest more than almost anything - its right up there with those little medical adventures that might make me feel a 'twinge'. At the appointment, it was decided that I need two bonds which are relatively painless and quick and could help prevent future issues. I am all about my long term health (or what is left of it) so opted to have them. It was also pointed out that I have two older fillings on a single tooth which are stressing the tooth and cause it to start to crack. It was also decided it was in my best interest for what's left of my long term health to have them removed and replaced with a new white filling. Lo and behold, the dentist actually had a cancellation for yesterday morning at 830. I rearranged my schedule for yesterday morning and went for the appointment.
That was one of the worst dental appointments I have had in decades. First, I needed Novocaine on the top right and top left front, as well as the middle top right. Novocaine went in and the dentist got called away to check on another patient. The assisting tech decided to be proactive and put the clamp on my tooth to get ready for the rubber dam. Well that hurt/was uncomfortable/made me cringe and my stomach hurt. Not a good start. She took it off and tried a second one. The dentist returned and said to wait until the last minute. That's okay I was stressed already.
Then the old fillings took forever to drill off. Even the dentist said it did. She started explaining in detail that I didn't need. When she was done drilling, then she started putting in little wedges to rebuild my tooth and held it all in place with another clamp. She then moved on to the bonds but the drilling fun had taken so long I needed more novocaine. Then I went to work, with a stressed out stomach, feeling like I had a frozen face. When I got to work, I was told I didn't look very good.
That was on top of the continuing fight to get my new (old) pain patches for my RA/fibro. I was on the 5mcg pain patches but my doctor thought I should increase my dose to 10mcg because of my pain levels. The 5mcg ones I got from the mail order pharmacy for 3 months at a time with a paltry co-pay of $95. My doctor sent in a new prescription for the 10 mcg which showed up in a one month increment for the same paltry co-pay. I called the mail order pharmacy and was told they needed a new 90 day prescription. Then I called my doctors office and asked them to change the prescription to a 90 day supply.
Then I had an allergic reaction to the
I waited for the
In the meantime, back at the ranch so to speak, I have been coping with increasing pain, fatigue - where getting into my pjs at 7 pm sounds like a good idea, and trying to live a 'normal' life.
All this has led to some crankiness. And with my new RA meds, I have had to give up alcohol so I can't even have a glass of wine to cope. Crankiness is ensuing because the scale has not cooperated in making me a skinny alcohol free pain patient.
Cancer five times
As a cancer patient, what is the worst thing we fear? Being told we have a recurrence or another cancer. So what if between the ages of 29 and 40 something you were told you had cancer five different times? Meet Chef Eric LeVine. He has done this.
I saw him on the Food Network's Chopped a while back and heard him say he had cancer five times. I thought it was significant at the time but not how significant. If you think about it, how many people do you know that have had cancer five times? I spoke at a local senior center last year and a gentleman who had to be in his mid 80's said he had had cancer five times. But he was probably twice the age of Chef LeVine. Its not a common thing.
So Chef LeVine has turned it around and tries to pay it forward by helping family members cope.
"So I realized that the best way for me to use this knowledge - my experience - was to pay it forward. Not with cancer patients, but with their families - teaching them how they can help their family member, the cancer patient."
He talks about people who call constantly 'how are you doing?' and what a drag it is for the patient. It is a constant reminder about cancer and not helping you avoid thinking about it. (Its almost as bad as the people who ask you why you aren't getting the same treatment as their cousin's neighbor's dog walker's hair dresser's uncle who had a different cancer 20 years ago.)
One recommendation I do disagree with him is yes talk to the cancer patient about the crap going on in your life. I would much rather hear someone tell me about their witchy boss, or idiot co-worker, or evil in laws, or annoying children/neighbors, etc than to have them ask me how I am feeling.
However he has been through the cancer roller coaster five times and is still here. I wouldn't want to be in his shoes but he is still here which is the really important part. When I am next in New Jersey, I will make an effort to eat in his restaurant and maybe even meet him.
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.
Its none of their business
I always read the advice columns and sometimes snicker, sometimes agree, sometimes disagree. Today's Ask Amy column was about dealing with stupid ignorant people idiots when your spouse has a Stage IV cancer diagnosis.
The woman writing in was trying to cope with the clueless questions. It never ceases to amaze me on what people ask someone regarding their or another family member's cancer. Really? Did you need to ask if he was going to make it? Or if he has a will? Really?
When faced with a situation with someone with a precarious medical condition, before you open your mouth (and put your foot into it) stop and think about what you were going to say. Is it really appropriate? How would you respond if someone asked you that? Is it any of your business? What are you going to do with that little tidbit of information if they even give you an answer?
On the other hand, if you are the cancer patient or spouse of one, you may also be a bit overly sensitive to the questions. I know I was. I perfected the topic avoidance mode where basically I did not want to discuss it. And it was none of their business so I didn't feel I should discuss it. Ask me a nosy question and I'll tell you how my cat is doing. (He's fine, getting a little slower as he nears his 18th birthday.)
The woman writing in was trying to cope with the clueless questions. It never ceases to amaze me on what people ask someone regarding their or another family member's cancer. Really? Did you need to ask if he was going to make it? Or if he has a will? Really?
When faced with a situation with someone with a precarious medical condition, before you open your mouth (and put your foot into it) stop and think about what you were going to say. Is it really appropriate? How would you respond if someone asked you that? Is it any of your business? What are you going to do with that little tidbit of information if they even give you an answer?
On the other hand, if you are the cancer patient or spouse of one, you may also be a bit overly sensitive to the questions. I know I was. I perfected the topic avoidance mode where basically I did not want to discuss it. And it was none of their business so I didn't feel I should discuss it. Ask me a nosy question and I'll tell you how my cat is doing. (He's fine, getting a little slower as he nears his 18th birthday.)
More on what not to say to sick people
I can't blog about this topic enough. There are so many people who unintentionally say the wrong thing to sick people. So here we go again.
Things not to say:
"You look so good!" - Um yeah. I might need to throw up pretty soon so excuse me while I rush to the bathroom. I can fix my hair and make up when I'm done.
"You need to just stop thinking about it and get busy." - Well if you can figure out a way to stop my brain from sending me down that evil health roller coaster, feel free to butt in again.
"You should try this new health supplement. It can't hurt." - Sure. I was looking for more pills to take. Let me check it against all my other meds and make sure there will be no conflicts and I'll just add it to the giant handful I take three times daily already.
"I wish I had the luxury of being sick instead of going to work every day." - I don't consider being sick a luxury. If I could go to work and have a regular life, I would be happy to.
"Illness is caused by stress. You just need to start coping better." - Let me whop you upside your head with a baseball bat for that one.
Again my all time top of the list of something to never say to someone who is sick: 'My uncle's neighbor's hair dresser's dog walker's niece had what you have and had this other treatment. I can't understand why you are getting this other treatment. Of course the niece died after a few months. It was pretty ugly near the end.' Gee thanks. I neededthat positive reinforcement that allows me to think of death and doubt my own treatment plan.
Some good things to say:
"I don't know what to say, but I care about you."
"If you need to cry, I've got plenty of tissues."
"I'm bringing dinner Thursday. Can you eat lasagna or chicken?"
"I'm going to the store tomorrow, what can I get you?"
"You are going through so much, yet you still have such joy. How do you do that?"
Other pieces of advice I would add to these is call up someone who is sick and just talk or even see if you can stop by and see them. Maybe they would appreciate a trip out to a coffee shop or being driven to the store if they have problems getting out on their own. Or maybe an offer to come over and help with some chores particularly if you know they are going through a tough time. Offer to clean the kitchen, do laundry, etc.
Sick people are still real people. Think about what you would want someone to say to you if you were sick. Pretend someone stops by when you are in the middle of a three week long bout with the flu... what would you want someone to say to you.
Things not to say:
"You look so good!" - Um yeah. I might need to throw up pretty soon so excuse me while I rush to the bathroom. I can fix my hair and make up when I'm done.
"You need to just stop thinking about it and get busy." - Well if you can figure out a way to stop my brain from sending me down that evil health roller coaster, feel free to butt in again.
"You should try this new health supplement. It can't hurt." - Sure. I was looking for more pills to take. Let me check it against all my other meds and make sure there will be no conflicts and I'll just add it to the giant handful I take three times daily already.
"I wish I had the luxury of being sick instead of going to work every day." - I don't consider being sick a luxury. If I could go to work and have a regular life, I would be happy to.
"Illness is caused by stress. You just need to start coping better." - Let me whop you upside your head with a baseball bat for that one.
Again my all time top of the list of something to never say to someone who is sick: 'My uncle's neighbor's hair dresser's dog walker's niece had what you have and had this other treatment. I can't understand why you are getting this other treatment. Of course the niece died after a few months. It was pretty ugly near the end.' Gee thanks. I neededthat positive reinforcement that allows me to think of death and doubt my own treatment plan.
Some good things to say:
"I don't know what to say, but I care about you."
"If you need to cry, I've got plenty of tissues."
"I'm bringing dinner Thursday. Can you eat lasagna or chicken?"
"I'm going to the store tomorrow, what can I get you?"
"You are going through so much, yet you still have such joy. How do you do that?"
Other pieces of advice I would add to these is call up someone who is sick and just talk or even see if you can stop by and see them. Maybe they would appreciate a trip out to a coffee shop or being driven to the store if they have problems getting out on their own. Or maybe an offer to come over and help with some chores particularly if you know they are going through a tough time. Offer to clean the kitchen, do laundry, etc.
Sick people are still real people. Think about what you would want someone to say to you if you were sick. Pretend someone stops by when you are in the middle of a three week long bout with the flu... what would you want someone to say to you.
Your doctor can fire you too.
Patients often talk about firing their doctor and moving on to a new one. Sometimes its bedside manner, perceived lack of compassion, or changing medical needs. I strongly believe that patients should have the ability to fire their doctor if they want. There is no reason why not.
As patients become more and more self educated, they become more outspoken and more demanding, questioning their doctors. There is nothing wrong with this but we need remember doctors are people too. They can fire their patients too. Recently on one of the billion cancer related message boards I am on, someone was writing about how their doctor 'fired' them. The patient questioned her doctor repeatedly on a changed medicine dose and finally the doctor's office told them to find another doctor.
Hmmmm.... Let's see. The doctor went to medical school and knows how to treat patients - or that is the premise when they graduate and get their medical license. They learn which doses are appropriate for patients. They probably have little reference charts too. They are doing their best to treat their patients.
If my doctor tells me what dose to take of a medication and I ask why, if they can provide a good explanation, I accept it. It does me no good to press the subject. I'm willing to give things a try and if it doesn't work out, I can go back for a change. If I wasted my time arguing with my doctors on every point, I wouldn't have any time left.
I believe that patients should ask their doctors questions about treatment and not hesitate in getting second opinions if needed. But we also have to rely on our doctor's advice and treatment plans and accept that they are giving their best advice. They probably consult with other doctors on difficult cases as well.
Patients need to keep in mind that doctors are people, in fact they are very busy people. If all their patients questioned everything, no one would ever get treated. We can ask but need to be polite about it, not argue the issue to death, and respect their advice. Or we run the risk of getting fired.
As patients become more and more self educated, they become more outspoken and more demanding, questioning their doctors. There is nothing wrong with this but we need remember doctors are people too. They can fire their patients too. Recently on one of the billion cancer related message boards I am on, someone was writing about how their doctor 'fired' them. The patient questioned her doctor repeatedly on a changed medicine dose and finally the doctor's office told them to find another doctor.
Hmmmm.... Let's see. The doctor went to medical school and knows how to treat patients - or that is the premise when they graduate and get their medical license. They learn which doses are appropriate for patients. They probably have little reference charts too. They are doing their best to treat their patients.
If my doctor tells me what dose to take of a medication and I ask why, if they can provide a good explanation, I accept it. It does me no good to press the subject. I'm willing to give things a try and if it doesn't work out, I can go back for a change. If I wasted my time arguing with my doctors on every point, I wouldn't have any time left.
I believe that patients should ask their doctors questions about treatment and not hesitate in getting second opinions if needed. But we also have to rely on our doctor's advice and treatment plans and accept that they are giving their best advice. They probably consult with other doctors on difficult cases as well.
Patients need to keep in mind that doctors are people, in fact they are very busy people. If all their patients questioned everything, no one would ever get treated. We can ask but need to be polite about it, not argue the issue to death, and respect their advice. Or we run the risk of getting fired.
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