Is there a social group for folks dealing with cancer (or survivors, etc)?

[creekland]

Just curious.  Since my mom's cancer is the first one ever in my immediate family, I'm feeling more or less totally clueless in knowing how to be a good companion.  I've had friends with cancer, but that's different.  My mom and I are good friends - relatively often traveling together, etc, but... this is just new to both of us... it's not like being on a trip (obviously) or even just visiting for fun.

 

I'd love to glean ideas/expectations from others who have BTDT or are being there, doing that - if there's a group sharing such things.

 

Hence the question - is there such a social group?  Or are there other options fellow Boardies can point me toward?

 

I won't be here the whole time - it's just not possible, plus my mom has siblings who also want to be here, so we'll take turns - but I still keep in touch via phone daily if I'm not home.  I need to know what to say/do (or not).  Mom has been pretty depressed - expected, I know.  I guess I don't know how to put much in words - hence wanting to read and glean.

[Liz CA]

Such a difficult thing for both of you! I suppose I would let her take the lead on most things, what kind of treatment or any treatment? Does she need help navigating the medical maze or need someone to do some research for her? Is she interested in still going places and doing things if it is not affecting her functioning yet? I would try to encourage her to not isolate even though this is perhaps what some people's tendency is. I think mine would be to isolate and think and reflect a lot.

Perhaps give her some time for this but also suggest activities she used to enjoy if she can still do them.

 

I would also not put too much stock into "predictions." Physicians cannot possibly always accurately predict how long she has or what is going to happen - sometimes the come close. Many doctors are uncomfortable with this even though some patients want a time frame to know what to expect. Just remembered this: My aunt was released from the hospital into hospice care in September and given roughly two months. She kept a calendar and crossed every day off in the evening. When she was well past the two months, she'd giggle in a "I've shown them" fashion. She lived until January 12th of the following year.

 

Much will depend on her outlook and life philosophy. When I spent weekends with my aunt who was dying of cancer, she liked to remember and tell me stories from her childhood - she also knew I enjoyed hearing them. So here we were sitting on her patio in January (in California), talking and laughing. These days remain some of the most precious memories for me.

 

Edited January 23, 2017 by Liz CA

[Barb_]

I just want to send a hug Creekland.

[PrincessMommy]

hugs.

 

I don't know about any social groups here, but I bet there are some other groups online somewhere that are for cancer support.  You may even find one specific to your mom's type of cancer.

 

I'm sorry this has happened and I hope you find good support.  :grouphug:

[Frances]

I'm so sorry to hear about your mom's diagnosis. I've gone through the process with both my dad and my father-in-law, but both still had very involved spouses at the time.

 

There are likely some support groups online. Where my dad had his care, they had a very extensive library of resource and support materials and also support groups. I know our local hospital has similar things. I hope you find something helpful.

[Only me]

I don't know of any groups on here but my mom had cancer. I'm not an expert but am happy to try to answer any questions about our experience. I'm so sorry you are going through this

[desiree77]

I could use a support group. If you find one, be sure to post. My mother-in-law came to us in September. Her cancer can't be treated where she lives. She hasn't been home since. I think it's likely she'll be here until the end, and it's been very hard adjusting.

 

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[Guest]

The oncology staff should have some ideas of support groups local to her area.

 

Basically lend an ear as she may have things she needs to talk through, and continue doing what needs to be done. My neighbor had an interesting request...she had been an elementary teacher and it gave her great joy to watch my then little guys play. So we did more in the yard near her window in her final days and of course we were on call for her sis who had moved in to caretake.

[creekland]

Such a difficult thing for both of you! I suppose I would let her take the lead on most things, what kind of treatment or any treatment? Does she need help navigating the medical maze or need someone to do some research for her? Is she interested in still going places and doing things if it is not affecting her functioning yet? I would try to encourage her to not isolate even though this is perhaps what some people's tendency is. I think mine would be to isolate and think and reflect a lot.

Perhaps give her some time for this but also suggest activities she used to enjoy if she can still do them.

 

I would also not put too much stock into "predictions." Physicians cannot possibly always accurately predict how long she has or what is going to happen - sometimes the come close. Many doctors are uncomfortable with this even though some patients want a time frame to know what to expect. Just remembered this: My aunt was released from the hospital into hospice care in September and given roughly two months. She kept a calendar and crossed every day off in the evening. When she was well past the two months, she'd giggle in a "I've shown them" fashion. She lived until January 12th of the following year.

 

Much will depend on her outlook and life philosophy. When I spent weekends with my aunt who was dying of cancer, she liked to remember and tell me stories from her childhood - she also knew I enjoyed hearing them. So here we were sitting on her patio in January (in California), talking and laughing. These days remain some of the most precious memories for me.

 

She's chosen chemo even though it will probably only lengthen her life a few months at best.

 

Right now (well, prior to chemo) she was still feeling relatively good - esp after her heart issues was fixed (99% blocked artery).  I've encouraged her to take her retirement funds and pull out her bucket list. IMO if she passes away with a penny in the bank she'll have done a terrific job. She's not interested.

 

I guess the closest analogy I can come up with, albeit not a perfect one, is this is like someone going away on vacation, but spending most of their time dreading that return home that they totally miss the actual vacation days.  I hate to see it happen (cancer - death) - period - but I hate seeing her missing out on what could have been some still good times.

 

And now that some chemo affects are starting to happen, it's tough for her to enjoy anything.  She's not mean or whatever.  She's sad or depressed.  We still play games.  We still go out to dinner (or otherwise eat together).  We still talk.  It's just difficult to get that spark of life back that always has been part of my mom and our being together.  Every now and then I see it, but not nearly as often as I'd like to (even considering the circumstances).

 

I know part of it is we're two different people in mindsets.  I would instinctively head off to a beach (with hubby) and enjoy my days looking at all the colorful little fishies, feeling the sand between my toes, and enjoying the soothing sound of the waves.  (Seriously, hubby and I talked about this when my own issue was up in the air before learning it wasn't that critical at the time anyway.  We talk about it now too.)  Then too, I'm a Christian and not afraid of the next life, so while this one might suck and getting to the next one might suck, it's not really the end of the world.  Mom has no such comfort (and no, I'm not hounding her to change her beliefs - she can if she wants to).  

 

I still wish there were something I could say or do to help her enjoy the time she has left here.  Maybe there isn't, esp with chemo affects starting to hit.

 

 

I could use a support group. If you find one, be sure to post. My mother-in-law came to us in September. Her cancer can't be treated where she lives. She hasn't been home since. I think it's likely she'll be here until the end, and it's been very hard adjusting.

 

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We'll see if there are others who are interested.  I wish my mom would move in with us, but her life is here, so I'll adjust as I can.  Our house isn't set up well for anyone at the end of their life anyway.  We have no downstairs bathroom...

 

Sending  :grouphug: to you and your hubby as you walk through the future.

[creekland]

I don't know of any groups on here but my mom had cancer. I'm not an expert but am happy to try to answer any questions about our experience. I'm so sorry you are going through this

 

If we were to get enough for a social group, would you be willing to join?

 

Social groups can be very private so details aren't out for the whole world to read.  It's a better situation when discussing some of these details (I think).

[Liz CA]

 

I guess the closest analogy I can come up with, albeit not a perfect one, is this is like someone going away on vacation, but spending most of their time dreading that return home that they totally miss the actual vacation days.  I hate to see it happen (cancer - death) - period - but I hate seeing her missing out on what could have been some still good times.

 

And now that some chemo affects are starting to happen, it's tough for her to enjoy anything.  She's not mean or whatever.  She's sad or depressed.  We still play games.  We still go out to dinner (or otherwise eat together).  We still talk.  It's just difficult to get that spark of life back that always has been part of my mom and our being together.  Every now and then I see it, but not nearly as often as I'd like to (even considering the circumstances).

 

I know part of it is we're two different people in mindsets.  I would instinctively head off to a beach (with hubby) and enjoy my days looking at all the colorful little fishies, feeling the sand between my toes, and enjoying the soothing sound of the waves.  (Seriously, hubby and I talked about this when my own issue was up in the air before learning it wasn't that critical at the time anyway.  We talk about it now too.)  Then too, I'm a Christian and not afraid of the next life, so while this one might suck and getting to the next one might suck, it's not really the end of the world.  Mom has no such comfort (and no, I'm not hounding her to change her beliefs - she can if she wants to).  

 

I still wish there were something I could say or do to help her enjoy the time she has left here.  Maybe there isn't, esp with chemo affects starting to hit.

 

 

 

 

The negative effects of the Chemo likely only serve to make her depression worse since it sounds like she has little hope that the chemo will buy her much time or put her in remission. This is a tough place to be in. I don't think there is one right answer for everything that will surface. I hope you find a good support group - online or IRL.

 

Perhaps setting small goals for each day may help a little. For instance, we cook a meal and eat together, or we take a walk around the block, or we watch a movie together and have some tea. One little positive / enjoyable activity your Mom can focus on. Do you feel it would be helpful to her if you encouraged her to look at all feasible options she has if Chemo becomes too hard on her? We usually feel better when we have choices and don't feel others are making the decisions for us. Or she may feel Chemo is necessary and she'll get through it but she may want to have something to look forward to when it's over, i.e., we take a trip to ... when this is done, we'll go to a concert, etc. This may take a little prodding because when you feel sick and depressed you are usually not all that interested in making any plans.

 

And I am with you - if I ever get advanced warning that my departure from this earth is near, I'd be out at the beach soaking it all in.

Edited January 23, 2017 by Liz CA

[East Coast Sue]

I went through the cancer diagnosis with my mom. She opted for chemo, then radiation, and then more chemo and finally she died. From diagnosis it was almost exactly one year until her death. It was really hard and I'm still trying to process her illness, death, and how to carry on without her. I begged her dr/nurse to refer her to hospice a week before she died, but they dragged it along and said it wasn't time. In the final two weeks if her life she went through some massive changes and it was traumatic for me because the dr's office didn't believe she was dying. How I wish that hospice could have been given a chance to do a consult. It might have helped her much more than I was capable of helping. Anyway, I'm here if you need/want to talk via pm or email. I'm up for a support group here if there is one that includes those left behind after cancer claims its victim.

My best to you and your mom. I'll pray for you both.

 

 

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[creekland]

The negative effects of the Chemo likely only serve to make her depression worse since it sounds like she has little hope that the chemo will buy her much time or put her in remission. This is a tough place to be in. I don't think there is one right answer for everything that will surface. I hope you find a good support group - online or IRL.

 

Perhaps setting small goals for each day may help a little. For instance, we cook a meal and eat together, or we take a walk around the block, or we watch a movie together and have some tea. One little positive / enjoyable activity your Mom can focus on. Do you feel it would be helpful to her if you encouraged her to look at all feasible options she has if Chemo becomes too hard on her? We usually feel better when we have choices and don't feel others are making the decisions for us. Or she may feel Chemo is necessary and she'll get through it but she may want to have something to look forward to when it's over, i.e., we take a trip to ... when this is done, we'll go to a concert, etc. This may take a little prodding because when you feel sick and depressed you are usually not all that interested in making any plans.

 

And I am with you - if I ever get advanced warning that my departure from this earth is near, I'd be out at the beach soaking it all in.

 

I have tried to get her to consider planning one more trip at some point - to anywhere.  I've made suggestions based on things she's mentioned before.  I'm also trying to encourage her to do smaller things - like visiting the casino (which she likes).  She was talking about the casino one with two of her sisters last night, and definitely sounded happier during that time.  I hope she follows through.

 

This afternoon she feels better than she did this morning (physically) and that's translated into some mental positives.  It may be a small step, but at least it's a small step.

 

She was supposed to go with us on our annual winter trip to points south.  She still insists hubby and I go.  That's going to be a hard trip for me...  I've already shortened the duration of it and her sister(s) will be here, but still...

 

I went through the cancer diagnosis with my mom. She opted for chemo, then radiation, and then more chemo and finally she died. From diagnosis it was almost exactly one year until her death. It was really hard and I'm still trying to process her illness, death, and how to carry on without her. I begged her dr/nurse to refer her to hospice a week before she died, but they dragged it along and said it wasn't time. In the final two weeks if her life she went through some massive changes and it was traumatic for me because the dr's office didn't believe she was dying. How I wish that hospice could have been given a chance to do a consult. It might have helped her much more than I was capable of helping. Anyway, I'm here if you need/want to talk via pm or email. I'm up for a support group here if there is one that includes those left behind after cancer claims its victim.

My best to you and your mom. I'll pray for you both.

 

:grouphug:   I'm sorry you went through it all too.  If enough are on here who want a group, of course those left behind are welcome.  You'd be our greatest asset I think - those who have BTDT and can offer thoughts and advice that only "insiders" know.

 

When I went to church on Sunday a gentleman from Hospice was there (his regular church).  He's already given me their phone number for when it's time.  I appreciate it.  It's not time now, but I know it will be coming.

[Liz CA]

You are already so far ahead than most relatives who often are so blindsided and in denial as well.

You are preparing and gathering information. This will be tremendously beneficial in the days and months to come.

No, it won't make the whole journey easy but you will likely not feel so lost and helpless when you know you can call on someone since you are getting a support network in place.

 

If she has breaks between chemo and feels a little better on the "off" days, I would try to get her out for a short walk or even to the casino since she seems to enjoy that.

[elegantlion]

If you create a group, I'll join. I'm a long term survivor with the likelihood of mild to severe long term side effects, mild ones I already have.

[creekland]

You are already so far ahead than most relatives who often are so blindsided and in denial as well.

You are preparing and gathering information. This will be tremendously beneficial in the days and months to come.

No, it won't make the whole journey easy but you will likely not feel so lost and helpless when you know you can call on someone since you are getting a support network in place.

 

If she has breaks between chemo and feels a little better on the "off" days, I would try to get her out for a short walk or even to the casino since she seems to enjoy that.

 

Don't read too much into what "I" have done.  Mom's cancer has been a prayer request at that church (via my nephew) and when this gentleman learned that I was there, he came up to me, introduced himself, and politely asked if I wanted information or services.

 

I know a little bit about Hospice in general due to my son volunteering there (in another city) and one of my co-workers passing away from a similar cancer, but I don't have any first hand experience - I've just heard about it from others.

 

I definitely really appreciate this gentleman for coming up to me.  

 

If you create a group, I'll join. I'm a long term survivor with the likelihood of mild to severe long term side effects, mild ones I already have.

 

I wanted to offer  :grouphug:  and not just a like since "liking" the side effects seems really out of place.

 

I think I might see about starting a group once I get some more time to myself to figure out how to do it.  I'm part of a couple of groups on here, but have never looked into how to start one, so I'll need to do some research.

[Guest]

People react differently when terminal cancer has arrived. The bucket list becomes irrelevant, and family becomes important for many. Others just go on about their daily lives and quietly step out. I would encourage you to take family photos. Trips are tough, as it takes a lot of energy, and sometimes they aren't eligible to fly commercially. The patient will let you know what's important. I will never forget a friend who lived two years after initial diagnosis...she had a lot of things to talk through when it was apparent that treatment wasn't working and the priest wasn't helpful..she needed moms who knew what was down the road for her fourteen year old and it gave her comfort to talk to those who had lost a parent or had a sibling who lost a parent to cancer as a teen. Her entire focus was on setting up her lad for life without her.

[Heathermomster]

I'll join too if you set up a group.  I'm sorry about your mom.. :grouphug:

[mumto2]

:grouphug: I went through chemo with my mom. It was awful. So very very dreadful, she quit. Lived the rest of her days with no symptoms which were 9 decent months. Last summer her hip broke, possibly spontaneous (I have been assured it can happen in the very elderly, she was 94). She passed during hip replacement surgery.

 

A very close friend is now out of remission. Can't believe this is happening again. So hugs to everyone.

[iamonlyone]

My very active, adventure-loving mom was diagnosed with late-stage pancreatic cancer Dec. 23. (She is 79.) She has been living with us since. For us, I have taken the initiative and planned things: geocaching (her hobby), walks in the neighborhood, tai chi at the local cancer center, wig fitting, starting a puzzle, etc. This has worked for us because she is living with us, so I have more opportunity than you have. She is just very tired and overwhelmed and not really at the point to plan and take initiative.

 

I highly recommend looking at palliative care options. We have a group here that is associated with hospice so, if/when hospice is needed, the team we will work with will be the same doctors, social workers, etc. we are already getting to know. We have had one appointment with palliative care, and they were so caring and helpful. They switched up my mom's pain meds, and her pain is now better controlled, and they helped us resolve an issue with constipation. (The oncologist's team addresses these things too, but we were told by both the oncologist and the palliative care team that the oncologist specializes in fighting the cancer, and the palliative team specializes in all the side effects, spiritual/emotional issues, general questions or fears, etc.)

 

I have also set up a page on Caring Bridge because it is so difficult to keep everyone updated about what is going on.

 

I'm so sorry your mom is going through this. It is very hard.

 

I would be interested in joining a special interest page. It is difficult parenting and care taking at the same time. Also, my one still at home (17 yo dd) and I are introverts, and we both find it challenging when we do not have any physical space (or quiet space) at home to recharge, and going somewhere public is draining. (My mom is an extrovert who comes in closed doors and doesn't get the concept of "private space.")

[creekland]

People react differently when terminal cancer has arrived. The bucket list becomes irrelevant, and family becomes important for many. Others just go on about their daily lives and quietly step out. I would encourage you to take family photos. Trips are tough, as it takes a lot of energy, and sometimes they aren't eligible to fly commercially. The patient will let you know what's important. I will never forget a friend who lived two years after initial diagnosis...she had a lot of things to talk through when it was apparent that treatment wasn't working and the priest wasn't helpful..she needed moms who knew what was down the road for her fourteen year old and it gave her comfort to talk to those who had lost a parent or had a sibling who lost a parent to cancer as a teen. Her entire focus was on setting up her lad for life without her.

 

I agree that everyone is different, but I think a social group can help us share and glean what might work for each of us.

 

In my mom's case, she's terminal, but feeling (or was feeling) very good (health-wise) when she got the news.  They had just fixed a heart problem that was causing her issues, so she felt better than she had in a while making the news very unexpected.  This is why I was hoping she'd take time to travel now (travel - with family and/or friends is one of her loves).  Instead she has opted for chemo hoping to get a few more months.  I doubt those will be good months.  It's her choice and I'll support her.  I just need to figure out how to do it - learning on the job.

 

I'll join too if you set up a group.  I'm sorry about your mom.. :grouphug:

 

I will try to set one up, but it might be after I get back home (aka next week).  My time here comes in short spurts and I need to figure out how to do it yet.  It's not at all something I'm even remotely familiar with.

 

I'm also not at all opposed to someone else doing it if they want to and have more time.

 

I just know I want it to be a private group so what we write is not open to the world, just members.  Anyone who wants to can be a member (those dealing with cancer, survivors, caretakers - past or present, doctors, nurses, or just compassionate fellow boardies).  I just want to keep it all accepting, loving, and without fussing going on.  Differences in reactions/opinions/suggestions/whatever are welcome.  Dissing another for their choices is not.

 

:grouphug: I went through chemo with my mom. It was awful. So very very dreadful, she quit. Lived the rest of her days with no symptoms which were 9 decent months. Last summer her hip broke, possibly spontaneous (I have been assured it can happen in the very elderly, she was 94). She passed during hip replacement surgery.

 

A very close friend is now out of remission. Can't believe this is happening again. So hugs to everyone.

 

I can't add a like to your post.  I'm adding a  :grouphug: .

 

My very active, adventure-loving mom was diagnosed with late-stage pancreatic cancer Dec. 23. (She is 79.) She has been living with us since. For us, I have taken the initiative and planned things: geocaching (her hobby), walks in the neighborhood, tai chi at the local cancer center, wig fitting, starting a puzzle, etc. This has worked for us because she is living with us, so I have more opportunity than you have. She is just very tired and overwhelmed and not really at the point to plan and take initiative.

 

I'm sorry.   :grouphug:   Overwhelmed is a good word choice. I think that's how my mom feels too - and tired, etc.  So far mostly we've been playing games when she feels up to it - and she's teaching me all about tennis with the Australian Open.

[iamonlyone]

I do like your trip-planning thoughts, i.e. something for her to look forward to. My mom has decided to host an 80th birthday party in her small town next July (whether she attends in person or looks on from heaven). It will be a dinner fundraising event for the senior center, and she is more engaged because she has something to think about and plan that will help others when she is gone.