Tips for friends who are feeling unsure what to say and do.....
(20)
If you have a friend or loved one who has been diagnosed with Stage IV breast cancer and you lack confidence on how best to help, I've attempted to put together some ideas, based on my own experience and on articles I've read. One article I read was written by a woman who has breast cancer but at an earlier stage. She understood that there's a world of difference between having breast cancer at an early stage and breast cancer at an advanced stage. You could almost say they are two different diseases. This is what she wrote but I've taken some liberties and have changed some parts of it to reflect the Australian situation:
"Lacking a map of how best to help friends with late stage disease, I've decided to simply ask. So, recently I've spent a lot of time talking to women with MBC, asking how I -- an early stager -- can support & advocate for women in the breast cancer community who have been diagnosed Stage IV. The women I talked to were very happy to help me and now I have for you (and me) this list.
1.Being metastatic is just awful luck, not something a person did or didn't do. Many are diagnosed de novo metastatic, before they even knew that was a thing. (Here I will add that "de novo" diagnosis means being diagnosed as Stage IV at the first diagnosis).
2. People with Stage IV are mentally in a different space than early stagers. "If I seem insensitive to an early stager's experience, it's because I'm over here preparing my young children for my death. While an early stager puts treatment behind them, I'm pleading for my treatment to just last another 6 months. And while an early stager is posting all about how what a hard year they've had while on treatment, but then it's over and everyone is dressing in pink and dropping off casseroles and walking in their honor on Mother's Day, I'm over here drowning. All of my old friends have forgotten me, all of my metastatic friends who "get it" have died. And no one has brought me a casserole or asked how I'm doing in months." (Here, let me add that I, personally, haven't had that experience. I've lost a few friends but my situation hasn't been anywhere near as extreme as that).
3. Don't buy people with MBC pink stuff. Most don't identify with the "pink" crowd. Instead, spread awareness for Stage IV and the fact that 113 people with MBC die each day in the US alone (in Australia, it is 40 women with MBC who die each day, which is the same statistic per head of capita).
4. MBCers are in treatment forever, until there are no more treatments. "I have a very good friend who had Stage II breast cancer who is always asking if this is the last treatment for me. I want to scream, I just told you three weeks ago that I would have treatment indefinitely!"
5. MBC is very isolating. Check in with your MBC friends, even if they are "just" online friends. "I don't know how many times I've cried because I feel so alone or that people don't care. Watching Stage I-III women get this out pouring of support makes me wonder if I just have the wrong friends."(Once again, I'd like to add that my friends keep in touch with me regularly; however I do find on websites that there is a lack of sensitivity shown to women who have late stage, incurable disease - while there is much celebration at the end of treatment for early stagers, they tend to forget that for some of us that will never happen).
6. The median life expectancy with MBC is 3 years, but appears to be improving due to research. "Know most stats are out of date and more and more of us are living with MBC, so we're in a gray area that's yet to be determined."
7. Get past the pink hype and focus on research. "You do not need to donate money but instead call your member of Parliament to increase research funding, or tell them NOT to forget women with late stage disease while they're talking up the fact that lives can be saved by discovering breast cancer in its early stages, and definitely ask them to pass legislation to rein in outrageous drug costs."
(I must add here that it's still vital to encourage women to go for screening tests to try to maximise their chances of discovering the disease in its early stages).
8. Don't assume that people with late stage disease are in that situation because they were not diligent about screening. It doesn't work like that. Be aware that those with early stage disease, even after treatment, are still at risk of recurrence and that they must always keep up treatment and regular checks." Breast cancer is an insidious disease and can creep in the back door at any time no matter how careful you think you're being. (N.B: In this paragraph I've used my own words, not those in the article).
9. Stage IV means constantly grieving: for themselves and the life they hoped to have. But most of all for their loved ones, especially children they will, one day, leave behind (my words).
10. Follow organizations like MET UP and METAvivor and MBCN, as well as individual advocates who are active on social media. "Retweet our tweets; share our posts. Hear our stories!" I'm adding here, for the benefit of those who don't live in the US that these sites are American but are worth following no matter where in the world you live. In Australia, it's good to follow the Australian Breast Care Network. Pass on information through social media but make sure it is substantiated. ~
That's where the first article ends. I've decided to copy a second one rather than asking readers to look up links. This an article which, in my opinion, might also help those who want to help but don't know how; words that might help you to understand what it's like to be on the inside of this disease.
One in 8 people will be affected by breast cancer at least once in their lifetime. A whopping 30% of those men and women will face a metastatic recurrence. Only 22% of those diagnosed with Stage IV disease will be alive after five years. Chances are you know someone affected by breast cancer right now, either for the first time, or again. You can take a step to help them today.
"Lacking a map of how best to help friends with late stage disease, I've decided to simply ask. So, recently I've spent a lot of time talking to women with MBC, asking how I -- an early stager -- can support & advocate for women in the breast cancer community who have been diagnosed Stage IV. The women I talked to were very happy to help me and now I have for you (and me) this list.
1.Being metastatic is just awful luck, not something a person did or didn't do. Many are diagnosed de novo metastatic, before they even knew that was a thing. (Here I will add that "de novo" diagnosis means being diagnosed as Stage IV at the first diagnosis).
2. People with Stage IV are mentally in a different space than early stagers. "If I seem insensitive to an early stager's experience, it's because I'm over here preparing my young children for my death. While an early stager puts treatment behind them, I'm pleading for my treatment to just last another 6 months. And while an early stager is posting all about how what a hard year they've had while on treatment, but then it's over and everyone is dressing in pink and dropping off casseroles and walking in their honor on Mother's Day, I'm over here drowning. All of my old friends have forgotten me, all of my metastatic friends who "get it" have died. And no one has brought me a casserole or asked how I'm doing in months." (Here, let me add that I, personally, haven't had that experience. I've lost a few friends but my situation hasn't been anywhere near as extreme as that).
3. Don't buy people with MBC pink stuff. Most don't identify with the "pink" crowd. Instead, spread awareness for Stage IV and the fact that 113 people with MBC die each day in the US alone (in Australia, it is 40 women with MBC who die each day, which is the same statistic per head of capita).
4. MBCers are in treatment forever, until there are no more treatments. "I have a very good friend who had Stage II breast cancer who is always asking if this is the last treatment for me. I want to scream, I just told you three weeks ago that I would have treatment indefinitely!"
5. MBC is very isolating. Check in with your MBC friends, even if they are "just" online friends. "I don't know how many times I've cried because I feel so alone or that people don't care. Watching Stage I-III women get this out pouring of support makes me wonder if I just have the wrong friends."(Once again, I'd like to add that my friends keep in touch with me regularly; however I do find on websites that there is a lack of sensitivity shown to women who have late stage, incurable disease - while there is much celebration at the end of treatment for early stagers, they tend to forget that for some of us that will never happen).
6. The median life expectancy with MBC is 3 years, but appears to be improving due to research. "Know most stats are out of date and more and more of us are living with MBC, so we're in a gray area that's yet to be determined."
7. Get past the pink hype and focus on research. "You do not need to donate money but instead call your member of Parliament to increase research funding, or tell them NOT to forget women with late stage disease while they're talking up the fact that lives can be saved by discovering breast cancer in its early stages, and definitely ask them to pass legislation to rein in outrageous drug costs."
(I must add here that it's still vital to encourage women to go for screening tests to try to maximise their chances of discovering the disease in its early stages).
8. Don't assume that people with late stage disease are in that situation because they were not diligent about screening. It doesn't work like that. Be aware that those with early stage disease, even after treatment, are still at risk of recurrence and that they must always keep up treatment and regular checks." Breast cancer is an insidious disease and can creep in the back door at any time no matter how careful you think you're being. (N.B: In this paragraph I've used my own words, not those in the article).
9. Stage IV means constantly grieving: for themselves and the life they hoped to have. But most of all for their loved ones, especially children they will, one day, leave behind (my words).
10. Follow organizations like MET UP and METAvivor and MBCN, as well as individual advocates who are active on social media. "Retweet our tweets; share our posts. Hear our stories!" I'm adding here, for the benefit of those who don't live in the US that these sites are American but are worth following no matter where in the world you live. In Australia, it's good to follow the Australian Breast Care Network. Pass on information through social media but make sure it is substantiated. ~
That's where the first article ends. I've decided to copy a second one rather than asking readers to look up links. This an article which, in my opinion, might also help those who want to help but don't know how; words that might help you to understand what it's like to be on the inside of this disease.
One in 8 people will be affected by breast cancer at least once in their lifetime. A whopping 30% of those men and women will face a metastatic recurrence. Only 22% of those diagnosed with Stage IV disease will be alive after five years. Chances are you know someone affected by breast cancer right now, either for the first time, or again. You can take a step to help them today.
But here’s the catch: don’t ask your friend what you can do. I’ll say it again: don’t ask.
Here’s why. When you say to your friend, “If there is anything I can do for you, let me know” or, “Let me know how I can help,” I know you mean the best and I know you’ll do whatever it is they ask. You’ve made a loving gesture, but what you’ve also done is to place the burden of the mental load squarely on your friend. They already have a lot on their minds because, as we know, life doesn’t stop when you have cancer – it just gets more complicated. You add in doctor appointments, treatment, side effects, anxiety & depression, and difficult conversations on top of work, parenting, bills, etc. Asking your friend to tell you what you can do puts yet another to-do on their list. (I'm adding here that, if you do that, it's highly likely your friend will mentally cross you off the list of people they can call on for help because people have trouble asking for help. They don’t want to be a burden. If you leave it up to them to have to tell you what to do, 9 times out of 10, they won’t have either the energy or the courage to tell you. (Once again, I've paraphrased the original to make it easier to understand.....in my context anyway!)
So don’t ask. Instead, act.
1. Deliver a hot meal. If you don’t live close by, order from your friend’s favorite delivery place or schedule a week of meal deliveries via a website. (Remember, your friend may not be up for eating while on chemo, but taking off the pressure of cooking dinner for their family is huge.)
2. Set up a meal train for them.
3. Clean their home.
4. Leave flowers, hot coffee, and a favorite book or magazine on their door step.
5. Take their kids out for a fun evening (aka, give your friend time for a bath or nap in peace).
6. Send a gift certificate for everyday things, like gas or groceries. Pay for their Netflix or cable. How about a little freedom for those who can't or don't drive with an Uber gift card?
Finally, just being there for your friend is huge. Fighting cancer is lonely, and some people have a way of disappearing when their friend or loved one is diagnosed, especially when cancer becomes a chronic condition, which it does for a certain period of time. Some friends are great when the emergency is new, but as we know, fighting cancer is a long-term gig. Show your friend you are staying put. Show up and listen. Better yet, talk about your life. Treat your friend like they're still your friend, no matter what. ~
That's the end of articles I've read and thought could be useful. Now to put it in my words based on my own experience:
When someone discovers they have metastatic cancer, they in shock for quite a while, possibly a year, and they are kept busy with appointments. It is usually weeks, if not months, before the emerge from the tsunami of oncology appointments, scans, tests and procedures and, even then, that can be short lived if and when things start going wrong and they're once again plunged into the same situation again.
It's necessary to understand that we need a lot of rest. Cancer itself is tiring and coping with appointments is even more tiring. However, we want to know that you're there. Cards, texts, social media messages are more comforting than you can imagine.
When friends are told, their first impulse is to offer help and we're grateful for that but, for the first few months, we're unable to marshall our thoughts well enough to know what sort of help we'll need. What we need to hear is, "I'm sorry this has happened to you. You're in my thoughts and I'll get back to you soon". AND we need to know you will follow up on that promise.
One of the best things I heard from a friend wasn't the ubiquitous "Let me know if you need anything" but "What can I do to help?" This slight rearrangement of words made a lot of difference because I knew she meant it and that I could ask straight out for whatever I wanted then and there.
At first friends are full of intentions but what a lot of people don't understand is that, generally, cancer is a long haul trip. If you make a promise to be there, know that if you break that promise, you're breaking continuity of an offer your friend may have come to depend upon. Only promise long term support if you know you can honour that promise.
The sort of help a person wants is obviously very individual. Someone with school aged children will need different help from an older person living alone. The best thing to do is to ask, as my friend did, exactly what they want from you. Would they like you to pop in and wash a few dishes, do some laundry (I'm sure that if someone researched this they would find that laundry multiplies much faster in a household where cancer is present than where it isn't!!) Or would they like you to sit and chat or just keep them company while they rest, knowing someone is there to answer the door if necessary.
As time goes by needs change. If there is some improvement in general health, we might be ready for a livelier conversation or we might like to be taken out, depending on whether outings are allowed by the oncologist. Obviously if the reverse is the case, we need that to be taken into consideration. A good friend will be observant and take notice if we're flagging and looking tired and will understand that we need to rest. However, that might not mean we want you to leave! Sometimes we might just like you to sit quietly reading, knitting or whatever your hobby is, while we rest.
These tips are only a general guide. It depends entirely on our condition at any given time. Depending on our treatment and/or prognosis there will be good days and less good days so flexibility is the key.
Speaking for myself, I feel very fortunate. I don't have a large circle of friends and I only have a small family but the friends and family I do have are loyal and thoughtful. And, best of all, they still treat me as they always did, even though my previous outgoing personality has become a bit subdued at times these days ~
Here’s why. When you say to your friend, “If there is anything I can do for you, let me know” or, “Let me know how I can help,” I know you mean the best and I know you’ll do whatever it is they ask. You’ve made a loving gesture, but what you’ve also done is to place the burden of the mental load squarely on your friend. They already have a lot on their minds because, as we know, life doesn’t stop when you have cancer – it just gets more complicated. You add in doctor appointments, treatment, side effects, anxiety & depression, and difficult conversations on top of work, parenting, bills, etc. Asking your friend to tell you what you can do puts yet another to-do on their list. (I'm adding here that, if you do that, it's highly likely your friend will mentally cross you off the list of people they can call on for help because people have trouble asking for help. They don’t want to be a burden. If you leave it up to them to have to tell you what to do, 9 times out of 10, they won’t have either the energy or the courage to tell you. (Once again, I've paraphrased the original to make it easier to understand.....in my context anyway!)
So don’t ask. Instead, act.
1. Deliver a hot meal. If you don’t live close by, order from your friend’s favorite delivery place or schedule a week of meal deliveries via a website. (Remember, your friend may not be up for eating while on chemo, but taking off the pressure of cooking dinner for their family is huge.)
2. Set up a meal train for them.
3. Clean their home.
4. Leave flowers, hot coffee, and a favorite book or magazine on their door step.
5. Take their kids out for a fun evening (aka, give your friend time for a bath or nap in peace).
6. Send a gift certificate for everyday things, like gas or groceries. Pay for their Netflix or cable. How about a little freedom for those who can't or don't drive with an Uber gift card?
Finally, just being there for your friend is huge. Fighting cancer is lonely, and some people have a way of disappearing when their friend or loved one is diagnosed, especially when cancer becomes a chronic condition, which it does for a certain period of time. Some friends are great when the emergency is new, but as we know, fighting cancer is a long-term gig. Show your friend you are staying put. Show up and listen. Better yet, talk about your life. Treat your friend like they're still your friend, no matter what. ~
That's the end of articles I've read and thought could be useful. Now to put it in my words based on my own experience:
When someone discovers they have metastatic cancer, they in shock for quite a while, possibly a year, and they are kept busy with appointments. It is usually weeks, if not months, before the emerge from the tsunami of oncology appointments, scans, tests and procedures and, even then, that can be short lived if and when things start going wrong and they're once again plunged into the same situation again.
It's necessary to understand that we need a lot of rest. Cancer itself is tiring and coping with appointments is even more tiring. However, we want to know that you're there. Cards, texts, social media messages are more comforting than you can imagine.
When friends are told, their first impulse is to offer help and we're grateful for that but, for the first few months, we're unable to marshall our thoughts well enough to know what sort of help we'll need. What we need to hear is, "I'm sorry this has happened to you. You're in my thoughts and I'll get back to you soon". AND we need to know you will follow up on that promise.
One of the best things I heard from a friend wasn't the ubiquitous "Let me know if you need anything" but "What can I do to help?" This slight rearrangement of words made a lot of difference because I knew she meant it and that I could ask straight out for whatever I wanted then and there.
At first friends are full of intentions but what a lot of people don't understand is that, generally, cancer is a long haul trip. If you make a promise to be there, know that if you break that promise, you're breaking continuity of an offer your friend may have come to depend upon. Only promise long term support if you know you can honour that promise.
The sort of help a person wants is obviously very individual. Someone with school aged children will need different help from an older person living alone. The best thing to do is to ask, as my friend did, exactly what they want from you. Would they like you to pop in and wash a few dishes, do some laundry (I'm sure that if someone researched this they would find that laundry multiplies much faster in a household where cancer is present than where it isn't!!) Or would they like you to sit and chat or just keep them company while they rest, knowing someone is there to answer the door if necessary.
As time goes by needs change. If there is some improvement in general health, we might be ready for a livelier conversation or we might like to be taken out, depending on whether outings are allowed by the oncologist. Obviously if the reverse is the case, we need that to be taken into consideration. A good friend will be observant and take notice if we're flagging and looking tired and will understand that we need to rest. However, that might not mean we want you to leave! Sometimes we might just like you to sit quietly reading, knitting or whatever your hobby is, while we rest.
These tips are only a general guide. It depends entirely on our condition at any given time. Depending on our treatment and/or prognosis there will be good days and less good days so flexibility is the key.
Speaking for myself, I feel very fortunate. I don't have a large circle of friends and I only have a small family but the friends and family I do have are loyal and thoughtful. And, best of all, they still treat me as they always did, even though my previous outgoing personality has become a bit subdued at times these days ~
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