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Let's Discuss...Isolation and loneliness

Re: Let's Discuss...Isolation and loneliness

Posted by CentralAB on Nov 22, 2019 1:35 am

SpeedyStill:
CentralAB‍ 
Going back to your first post. Yes experiences are real. My wife when she told me that she was moving out said "4 years into our marraige I realized that I had made a mistake marrying you" 
What a blow to my male pride. Was our marraige just a big lie.
48 years Saint Patrick's day 2020.
I still get extremely depressed thinking about what she said.
I loved my wife and I still do. That is the hard part to deal with.
So this is the experience and feelings come with the reality.
You are a special person to commit to being a caregiver. You should be proud of this commitment. 
Trying to move the discussion forward. I am glad that so many community members have posted to this discussion.
Thank you for your posts
SpeedyStill 

 
Howdy SpeedyStill‍  Thank you for sharing your personal story here. What an enormous beating you have taken in recent years; and certainly, its understandable, that you would feel this way.  I cant imagine how it would feel to add cancer to all that as well. One thing I have noticed is you are already on the path to healing. It looks like you have lifted people's spirits here a number of times, just by participating, and encouraging where you can.That takes enormous courage, after all you have had happen, and I am sure I speak for others when I say you are appreciated here. I actually know exactly what you are talking about, from my deep/dark past. And I can tell you from experience that it wont stay that way for you. Time will heal, and you will move forward in your life too. My "trick" has been to find ways to help/encourage others, turn my pain into care for someone else who is hurting. I agree, this discussion has been a very good one and I am sure that will increase, and help others who are doing the same journey.

Re: Let's Discuss...Isolation and loneliness

Posted by CentralAB on Nov 22, 2019 1:39 am

Aries:
I have not experienced isolation or loneliness since my diagnosis - I have been very blessed to have a great group of friends and family that have rallied around me. Family have been a huge support even though my immediate family all live in Europe; my spouses' family have rallied to take me to appointments and check in with me frequently. My family (parents and sister) communicate with me all the time. I update them with any appointment info and how I am feeling a lot. I think since my diagnosis, we communicate even more than we did. Friends have not been wary or shy to ask me how I am doing, how I am feeling etc. which makes me feel like I am still the same person - I just happen to be fighting cancer. I think my openness about it (my blog and not being uncomfortable in talking about it has helped people feel comfortable around me). I also still look the same other than my initial weight loss (from my own crazy diet) and my hair cut, I still look healthy because I have been lucky with my treatment so far so I think that also helps people feel comfortable with me.
I do wonder if in the future, if I start to look like a cancer patient if attitudes will change. I know it is hard for people to see someone they care about looking ill.
I have always been happy in my own company and do not need a lot of people around me - I like being by myself or just with my spouse for the most part.
And this community has been a wonderful addition in my life - everyone is truly lovely and while none of us want to be a member, I don't think that I would have managed so well without you all. So thank you to every single one of you - big hugs to you all! 🤗

Howdy Aries‍  Thank you for sharing your story. Its also good to hear how this forum has helped you. 😀

Re: Let's Discuss...Isolation and loneliness

Posted by CentralAB on Nov 22, 2019 1:46 am

I have since learned that even a Mom that isn’t well has so much to contribute to her children.  Sometimes, those quiet bedside moments are the most precious, most teachable moments.  Sometimes I think the isolation and loneliness we feel is based more on the losses we feel physically, and emotionally, as well as the loss of control we may feel when our world gets spun around.🌸

 
Wow! Thank you for sharing this amazing part of your story! What a wonderful thing to be able to say to others who are going through a similar thing!

Re: Let's Discuss...Isolation and loneliness

Posted by ACH2015 on Nov 22, 2019 7:46 am

Isolation and loneliness has occurred with me as a transitional process.

From diagnosis in 2016 to the multiple treatments, recurrence and never ending healing, isolation and loneliness has taken many forms, lengths and depths.

I missed my workplace and the people within for so long, I missed feeling well enough to function in life, I missed the interaction and feeling of accomplishment I knew for decades. I still do, but I know that part of my life is over and had to end.

Today, being officially retired, and not having my days filled with multiple (never ending) consults, treatments, occasional battles with "the system", and follow ups - I am somewhat situation ally more isolated and lonely than in the past 3 plus years.

This stage of transition (the last I hope) is as challenging as the diagnosis and treatment stage was. It is a part of the process all of us will go through in our own unique way.

I'm still trying to figure out where I belong, fit in, and I truly feel like I am between worlds.

All I can suggest is to take that unnecessary pressure off your shoulders, decompress, and find your way in your own time.

Like everything else, it takes practice and acceptance.

Still struggling.

ACH2015


 

Re: Let's Discuss...Isolation and loneliness

Posted by SpeedyStill on Nov 22, 2019 11:19 am

Those community members that follow my posts known a lot about my story. I am just using examples to make a point.
My first experience with Cancer was not perfect however I had a lot of support like others here.
The change in my life happened before I was diagnosed with a mass on my Kidney which may be Cancer.
Although with people my age they monitor the mass and usually do nothing. My wife leaving me, the glue that kept the family together, and the threat of Cancer, started me on my downward slide.
I found Cancerconnection December of 2018 and it brought out the hidden me who was trapped by a wall to protect my male ego and survive.
It brough out the true me who loves to read, write and help people feel good about themselves. I have tried to do this as long as I can remember.
One of my dry jokes is that I tell people that now only kids and dogs love me.
This part is true I loved playing with my granddaughter. She will be 15 in January and has a boyfriend (that I aprove of) so she has little time for me.
But that is OK, our children and grandchildren reach an age where they detach from there parent and enter into adulthood.
My grandson is 7 and I love to play with him but he thinks I am 27 and not 72. He plays hockey and wants me to be goalie. I am out in our Cresent in the cold rain/snow playing with this child who has unlimited energy. I am out there doing my best. I know that I will pay for it the next day and you dont know how true it is. Moving around the Condo is difficult.  My arthritis in my  joints will calm down with rest and medication. My whole body is actually sore. But if it was my last day I would be so happy.
I have met very few dogs that don't like me. 99% come up to me willingly for a sniff and a stroking of there heads and chin, then they want to play with me.
You never get turned down from a date with a dog you know. They are always glad to see you, to go walking, have a little love in (dry humour) with them licking your face and you stroking there body.
You can only do what you can do however nothing will stop me from living to my full potential.
Thank You Cancerconnection and all its members for being there when I needed help getting back to who I am.
My goal I will share with everyone: 
"I will work hard to be the best me that I can be"
Strategy: Have an open mind to all points of view
I could go on but this is long enough to read.
Best Wishes to everyone
SpeedyStill 

Re: Let's Discuss...Isolation and loneliness

Posted by Lianne_adminCCS on Nov 22, 2019 12:35 pm

Thank you to those who have shared their vulnerability and trusted this community with the feelings that we all too often keep to ourselves. Hearing from both caregivers and those diagnosed is so important. While never surprised, I am always in awe at the way our members support each other., lift each other up, and share in ways that serve to help others.

Lianne

Re: Let's Discuss...Isolation and loneliness

Posted by Elsie13 on Nov 22, 2019 4:18 pm

Great to hear from you, ACH2015‍ .  Those are very wise thoughts:    "  I'm still trying to figure out where I belong, fit in, and I truly feel like I am between worlds..............

Like everything else, it takes practice and acceptance."

I'm also trying to figure out where I belong. Like so many people are experiencing, I suppose, friends of ours keep dying!  One lady was a nurse, aged 65, who seemed completely healthy and suddenly died of a heart attack.  A few years ago, a friend died in a work place accident.  He was around age 58 and also seemed perfectly healthy.  And then, massive brain trauma. So I started a blog last month;  people may as well know who I am and I won't be able to express myself once I'm dead. So my blog seems to be about searching the limits of political correctness. So I posted a link to the blog on a couple of humanist facebook pages, and some people are telling me I'm not a humanist!  I'm a paid member of those particular organizations!   However, one person said I seemed like  a militant atheist, which I think they meant as an insult.  However, if I could be an excellent writer like Christopher Hitchens was, that would be so wonderful.  
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: Let's Discuss...Isolation and loneliness

Posted by Aries on Nov 22, 2019 9:29 pm

Elsie13‍ - Write your blog Elsie13  😀 - don't worry about being politically correct or what people say - you can't please everyone. I find most people who know you will support what you have to say. When I started my blog, I didn't know how it would be read but I got great feedback to say it is helping people learn about cancer, be more health aware and to be a patient advocate. I don't know how many people are reading it but if I reach even  person that could help them then I did my part.

Please post your blog info so I can check it out 😊

Re: Let's Discuss...Isolation and loneliness

Posted by Elsie13 on Nov 22, 2019 10:26 pm

Thanks, Aries‍ , that's so true.  You can't please everyone.  I just found your blog listed on your  ABOUT ME.  So I will take a look.  I sent you a private message, so you should get it in your email I think.  A few of my facebook friends were quite annoyed with me due to my blog, especially the one about Quebec teachers and Bill 21. 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: Let's Discuss...Isolation and loneliness

Posted by Aries on Nov 23, 2019 12:17 am

Elsie13‍ - I followed your blog! You are a good writer 😊
Don't worry about your friends - unless you really cross a line you don't have to worry. You were voicing your opinion just like they did. Each to their own!

Happy Blogging!

Re: Let's Discuss...Isolation and loneliness

Posted by Cynthia Mac on Nov 23, 2019 8:35 am

Elsie13‍ Yes, these tragedies seem to come in waves. The year my Mom died, FIVE of my friends also lost their mothers. In the past month, one of my former work colleagues lost a husband, another friend lost her mom, and another friend’s son may not make it until Christmas.

ACH2015‍ - good to hear from you. I’m still @ the centre every 3 weeks. Dad’s treatments are shorter now, though.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Let's Discuss...Isolation and loneliness

Posted by Melanoma on Nov 23, 2019 6:43 pm

Do we really have a choice we might as well embrace what we have and deal with it 
Be a warrior 💪
 

Re: Let's Discuss...Isolation and loneliness

Posted by Char3xSurvivor on Nov 25, 2019 2:37 am

Hello,
I'm new to this idea of online support.  However, I live in the North and therefore, not only can it be isolating for a regular person; but for cancer patients it is 100 times worse, there are no supports here.  We have a chemo room at the local hospital that currently seats 6 people, 2 nurses rotate shifts.   4 "chemo" doctors that are actually GPOs that are not educated in cancer yet work with Cancer patients.  No oncologists.  Cancer room nurses are more knowledgeable about patients experiences.

Friends don't know what to say or do and pull back.  Most people don't know how to be around survivors or patients that will survive.

I've had 3 diagnosis' of Skin Cancer (stag 4 - 2007, stage 2 - 2015, stage 3 - 2019).  One in Ontario, two while living in the Yukon.

Re: Let's Discuss...Isolation and loneliness

Posted by Wendy Tea on Nov 25, 2019 5:20 pm

Char3xSurvivor‍ , just a thought...when I was recovering from surgery, sleeping, and healing, I asked everyone to contact me by email. That way they did not worry about waking me up. I also reached out by email if I needed help. This meant there were no awkward face to face interactions. I also asked if they would keep me up to date on gossip partly so they realized I had not lost my sense of humor! It is odd that as patients, we have to show people how to interact with us. This is one more problem with being sick.

Please reach out to your friends. They might be more comfortable with specific requests.

Please stay in touch.
Wendy Tea 
I am a survivor. Wendy Tea

Re: Let's Discuss...Isolation and loneliness

Posted by Cynthia Mac on Nov 26, 2019 11:45 am

Char3xSurvivor‍ , I’ve read some of your other posts, but wasn’t sure how to respond other than to welcome you to the site.

You’ve found this discussion thread, and you’ve also found out  pretty much how it got started. People do tend to pull away at a time such as the one you are in. I used to be one of those people - I’m not good with small talk, and pretty well didn’t know what to say. Unfortunately, that’s often the case until cancer touches our own life.

You can try to be gentle with those folks, or you can look at it as them leaving your life to make room for the new people coming into your life - your medical team, fellow cancer survivors and other people who “get it.”

You mention you have no supports in your area, so I’m going to suggest the help line - the number is at the bottom of almost every screen here on Cancer Connection. There is also a Peer Support where you can apply and be matched with someone who is in a similar situation to yours.  You might also try the Community Services Locator, https://csl.cancer.ca/en in case there IS something in your area that might be helpful to you.

As Wendy Tea‍ Says, sometimes we have to teach people how to interact with us, but if they aren’t able, it’s OK to reach out to others.

Again, welcome.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Let's Discuss...Isolation and loneliness

Posted by a3a on Jan 4, 2020 1:12 pm

Cancer can be an isolating procedure, especially when we have to be so careful to avoid crowds where we could catch things. I've been hibernating at home for two or three weeks. I didn't want to catch the cold that's so prevalent among friends right now.  I didn't want to risk have my upcoming surgery postponed after waiting seven weeks for the procedure.  Sometimes it's a bit lonely.  I haven't heard from some friends who I thought might call, but remind myself it's hard for many people--they don't know what to say or do, so they pull away. I do have two very close friends who live quite a distance from me who have said phone any time, day or night.  Several friends send funny emails as they know I love to laugh each day.

I've kept myself occupied by colouring images that will eventually be turned into cards and donated to various charities.  I also signed up for Acorn TV,Britbox and Netflix, which have lots of binge-worthy series.  I've been rewatching the Call the Midwife series for the past week.  Although it is sad occasionally, it reminds me of the cycle of life as well as how many new treatments are available in 2020 that weren't options in the 1950s and 1960s.  And because the characters are like each others' family, I feel I am in the midst of a very caring group.  On Britbox, there is a hilarious series called The Last of the Summer Wine, about three old pensioners living in Yorkshire who come up with crazy ways to fill their days. I've almost finished all 8 seasons, and will miss it when it ends.

Although it's a quiet life right now, and will be while I recover from surgery, there is still something to do each day, and something to look forward to. Thinking of you all, wherever you are, and wishing you well, Ginny

Re: Let's Discuss...Isolation and loneliness

Posted by MCoaster on Jan 4, 2020 6:08 pm

I can relate to feeling rather adrift when it comes to local support even though I live in south west BC.   Your winter nights will be even longer than ours and the lack of sunlight can make life even harder.   You have already discovered this site which is a lifeline and great support because there always seems to just the right person at the right time.    I would like to endorse Cynthia’s suggestion of joining the Peer Support programme.  I found someone who had had the same diagnosis and was able to answer questions and give useful suggestions from her own experience.   We sometimes had hour long phone conversations most of which was about life in general.   The volunteers who I was initially matched with came from across the county and I chose someone from BC.

Re: Let's Discuss...Isolation and loneliness

Posted by Daniel-J on Feb 12, 2020 12:21 am

In order not to think about the disease I try to do my favorite thing, it makes the brain muffle negative thoughts.

Re: Let's Discuss...Isolation and loneliness

Posted by Kolombe on Feb 21, 2020 9:18 am

As an extrovert and former public school teacher (never without someone wanting something etc) I have found the last few months really lonely. Due to mobility issues, I am not driving myself places. I am retired, and hubby works full time. Just before Christmas my best friend died, she was really the only person I would just call to chat. Just after Christmas we had to put our dog down. I am alone all day!  I also suffer from chronic depression. 

I do get out a couple times/ week to play Dungeons and Dragons with my husband, and I try to get to church as often as possible. My daughter started coming over on Tuesday evenings to keep me company. My husband has so much to do, has trouble sleeping, and on a Saturday I might actually see less of him than a workday.

I think I may be rambling now... I am alone, and I feel very lonely. I almost look forward to hospital days because there are so many people to talk to or watch. I am seeing my Psychologist to work through things. My sister has lived alone for years and loves it, though she isn’t home very much with all her work, church, and musical activities. I get that alone doesn’t mean lonely, but at this moment it does for me.

Re: Let's Discuss...Isolation and loneliness

Posted by Brighty on Feb 21, 2020 12:03 pm

Kolombe‍  thank you for reaching out to us.   We all feel lonely at some point in our lives.    There are so many reasons for that, especially  in today's world of technology,  where people  feel more isolated  and lonely than ever.     Please go easy  on yourself and practice  self compassion.      Now think of activities  you enjoy doing.    Is there someone  you can do those with?  Who do you enjoy spending  time with?  Can you you reach  out to that person or people?        Sometimes you just have  to reach out to others and let them know you want to be with them .       I'm positive  who ever you reach out to will be thrilled to hear from you and will be happy to spend an afternoon  with a fabulous  lady such as yourself.     Let us know what you decide to do! 
Help is out there. All you have to do is reach out.

Re: Let's Discuss...Isolation and loneliness

Posted by Lianne_adminCCS on Feb 21, 2020 12:32 pm

Hello Kolombe‍ - nice to hear from you. I am sorry you are struggling with loneliness and mobility issues. It sounds like you are doing the right things by getting out here and there and seeing a psychologist . I am sure your Tuesday evenings with your daughter are a great break in the week too.
While you are somewhat confined to home, what about doing things indoors that keep you occupied. I can lose an afternoon with a jigsaw puzzle, or a netflix marathon. Or perhaps skyping with friends and family who are not so close by.
Either way, we are here for you and always willing to listen. 

Keep us posted

Take care
Lianne

Re: Let's Discuss...Isolation and loneliness

Posted by ACH2015 on Feb 21, 2020 12:38 pm

Hi Kolombe‍ 

The loss of both your friend and your dog have contributed to the isolation cycle along with the increased mobility issues. I've said it before and perhaps its true here as well. Those of us that suffer from chronic depression are already at a disadvantage with having a glass half empty mindset.

Like I said in my post in this thread:


Today, being officially retired, and not having my days filled with multiple (never ending) consults, treatments, occasional battles with "the system", and follow ups - I am somewhat situation ally more isolated and lonely than in the past 3 plus years.

This stage of transition (the last I hope) is as challenging as the diagnosis and treatment stage was. It is a part of the process all of us will go through in our own unique way.

I'm still trying to figure out where I belong, fit in, and I truly feel like I am between worlds.

Like everyone, I have improved in some areas, and at times feel lonely and struggle to find connection when wanted and needed. But all we can do is to pick up another tool.

Good for you in getting out a couple times a week with your husband, and your daughter sharing Tuesday evening with you. All I can suggest is to try to improve and expand those in person activities. Just thinking here... are there members of your church that could assist with your mobility in getting out more through the week? Does your community have a pool you could use for aqua therapy or other "able to do" activities that would get you back out with others? I know when a pet dies its a personal thing toward getting another one, but if you have a Humane Society or animal rescue service near by, perhaps you could volunteer in some way to fill your time, feel contributory and benefit from the company of others - people and pets that is!

Its tough sometimes to think outside of the box, and hopefully you will find something that strikes you and will work toward being more involved with others in some way.

Keep in touch and keep connected.

ACH2015

Re: Let's Discuss...Isolation and loneliness

Posted by WestCoastSailor on Feb 22, 2020 1:59 pm

Kolombe‍ 

I don't double dip often (comment twice on a thread like this.) but something about your post just touched me. This thread has so much good information in it. And such heartfelt pleas for attention.

Like others, I encourage you to reach out and expand your choices just like you did with your students in the class room. My wife was an elementary teacher who gradually migrated down through the grades to kindergarten. So I know a little of what you are talking about when you talk about the needy little hands pulling and tugging at you. She used to draw me into her adventures with the kids in gardening and painting and reading and...

That "in between worlds" that ACH2015‍ talked about is real for many of us. While my church groups are important to me they don't often understand the place that I stand in the metastatic cancer world. And yeah I'm a lay minister too. Looking for the empathetic ones will help you expand your options.

What I have found is that identifying choices has been good for me. Surrey Cancer Centre has a metastatic support group that in the few short months has become quite precious to me. My sense of adventure has been piqued by the challenges. I'm starting to use public transport more and more. As I look at kneeling buses and the folks that get on and off  I realize that mobility and fatigue issues may limit what I can do, it doesn't have to stop them completely.  And I have to think with a grin about the metastatic patient who came in a few weeks ago and said she had discovered the secret to getting her license back - she took a few driving lessons and retook her test passing with flying colors.

While I want to run over and give your husband a totally inappropriate shake and say "Your partner needs you." I too have been him. Not knowing what to say and running off to work or other things to keep busy so I didn't have to think or talk about the those difficult things.  I have actually refered a few other people to the thread we have going over here on difficult conversations.

Thanks for encouraging me to think more deeply about this.

Angus
My story: http://journey.anguspratt.ca