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Let's Discuss...Isolation and loneliness
                    c6b8f9859391fb90cc098ea9cdaf43cc-huge-ld


Cancer can make you feel very alone. Friends and family may not phone or visit as often as you’d like. You may feel too sick to work or enjoy social activities. Even when you’re with people, you may feel that no one understands what you’re going through.

Family and caregivers can also feel lonely. They can feel as though they’ve lost their best friend or that they have no one to talk to about what they’re going through. They may feel overwhelmed by new responsibilities. They may feel like they don’t have time to see friends or do activities they enjoy. They may also feel overlooked by the healthcare team or family members and friends, who tend to focus on the person with cancer.

Have you experienced loneliness or isolation like described above?
What suggestions would you give to someone feeling isolated or alone?


 
 
47 Replies
CentralAB
995 Posts
I noticed the word "feel" was used extensively in the op, which makes me wonder, what is being said here. In my experience,  while this subject can engender certain feeling, the experiences are real, and not "feelings." 
perot
1 Posts
I live all by myself in the country -no neighbours close by, but, I've lived here for the past 42 years and greatly enjoy my property and home.  I read, I clean I do all my investing on the computer and am so busy I don't really have a time to feel sorry for myself -nor should I.  I'm 77 years old and have had a wonderful career, 2 great girls and one good marriage.  My husband died 5 years ago of cancer and this is my second time for colon cancer.  I also have had melanoma.  Hey!  Life has been good -Enjoy each day! 
Elsie13
1531 Posts
perot‍ , Welcome. Glad you have found cancerconnection.  If you want to jump right in to other discussions, you could look at Introduce Yourself, and the Colorectal discussion. You can join a discussion that's already there, or start your own topic. 

https://cancerconnection.ca/discussions/viewcategory/41 ,  https://cancerconnection.ca/discussions/viewcategory/64 
Elsie13
1531 Posts
Lacey_adminCCS‍ , I live with my husband and our 2 adult sons and I'm the sort of person who doesn't want a lot of friends. Anyway 9 days after my first chemo, my brother and sis-in law from the Toronto area came to visit us in Montreal.  (Around Jan. 5th, 2017).  Hubby and the 2 'boys' think that tidying and cleaning just means putting newspapers in the recycling.  So I'd had my first chemo and didn't know what to expect, and there I was dusting and cleaning bathrooms, and wishing they would wait until summer to visit!  But they stayed one night in a motel, visiting us during the day, and then drove home, so it was fine. 

In May 2017, when I was having radiation every day, I sometimes saw the same people in the waiting area, and people were chatting with people they'd seen the other day.  But I had to have a sort of full bladder for my pelvic radiation, and was feeling very grumpy about that, so hubby and I just sat there reading magazines. 

Amores‍ , yes that's me too, not really a people person.  I'm a bit worried about you not having a person to call if there's a problem.  If it's a big problem, of course you'd call 911, but sometimes people are in a situation where they're not sure what to do.  The neighbour who did the cleaning, could you call her in one of those 'unsure' situations?   
Excellent point CentralAB‍ . While loneliness can be felt, it is often a reality for many as well


Lianne
Cynthia Mac
3080 Posts
Good topic.

I have lived alone for 23 of the last 25 years, so I’m very much able to embrace “aloneness.” Me and I have quite a thing going on in the craft department!

But, when my dad got lung cancer and “tapped” me to be his primary caregiver, I learned how lonely it can be, even with 3 siblings. It isn’t that they have done nothing to help, it’s that they don’t communicate what they HAVE done, leaving me feeling like I’m working in a vacuum. I’ll go to do something and get told that so-and-so did that just last week (most times, it’s something that needs doing again - like wiping off the front of the kitchen cupboards) and it would be nice to know, you know?

So, for me, it feels like I’m isolated/ lonely because of the “radio silence” I’m getting. Truth, there are days when I may as well have been an only child in all of this. I actually felt compelled to text one brother this week to “call Dad” because I knew that he hadn’t talked to Dad since his fall, which was a week ago yesterday. (Not only did he call, but he drove out and visited today, and I wonder when that would have happened without a prompt.) I sometimes also wonder what any of them would do if I had to isolate myself from the situation (say, due to second hand smoke...)

As CentralAB‍ Observed, while it is possible “it feels like I’m isolated,” maybe I really have been isolated.

Amores‍ Good to hear from you!
Brighty
6457 Posts
Like Cynthia Mac‍  I also enjoy  my alone time but have never felt more alone then I did as a caregiver.      My fiance  shut down  and wouldn't communicate with me.     My fiance's family went on like nothing was happening .    His dad was jetting off to Europe .. his brothers were too busy working and doing their own thing.    My resentment towards them kept building and I was passive aggressive  about it.    I would make comments  to my family like 'must be nice to travel Europe while your son is in treatment .  I was so resentful that everyone got to live their lives and didn't seem to gave a care in the world.   '  i loved my fiance and would have done anything for him but i was no nurse.   I had no idea what i was doing, didnt know how to work the feeding tube,  didnt know what to do when he vomited  constantly  and locked me out of the bathroom.     I felt so helpless and alone.      After  a while my mom got really mad and gave his family  a piece of her mind.     .They stepped up pretty quick.   You don't mess around with a lady like my mom.       My family was supportive of me but they weren't allowed over because  my fiance  wanted nothing to do with anyone.     My friends were off living their lives. . And why shouldn't they?   And I didn't have much time for anything  that summer except go to and from the hospital for medical procedures for him.    It was brutal.    But i Ioved him so much... I would do it again but maybe be smarter  about it.  .. Ask for help instead of being passive aggressive  and get more support. ... and not let myself get so isolated from the world.      
Whitelilies
918 Posts
FOR SURE I have felt lonely.....isolated....and then some.

I have learned that "telling someone" you have cancer DOES NOT EQUATE to (any) support at all.

They just CANNOT "handle" it.  Well; what about the person who HAS cancer?  We are FORCED to "handle" it.

Having supports are vital.

I am grateful being part of this online community......We listen....we guide....we help....we support....we share.....

WE GET IT.

Regards
Lillian
Whitelilies 
prairiemom
112 Posts
loneliness can mean different things for different people I've found. I can be completely happy in my own company, although i talk to my cats and dog during the day like they are people, lol!  You can be in a crowded room and still be lonely though.  I found one of my best friends stopped talking to me about her life, even about her son being diagnosed with autism, as she thought I had enough on my plate,whereas I just wanted to hear about what was going on for other people and not about cancer. 

I did feel shut out of my own immediate family for a little while, my husband was amazing, coming to all my appointments, taking care of our kids (they were 9 & 7 at the time), taking care of me, doing all the housework etc, that when i felt well enough to be out of bed and start joining the family again, I didn't know what to do with myself to start with, because everything was "done" and I didn't know quite how to insert myself back into the family routine again and be useful. That soon passed though :)

I think the loneliest time was after my active treatment was done, and my last surgery was over, and you have time to sit and think "what the heck just happened??" . People that have no knowledge of going through, or caregiving with cancer are blissfully ignorant and think we are ready to bounce back like nothing happened, like your whole world wasn't just tilted off course. My close friends and family continued to be awesome, and would check in with me, but trying to figure out what to do next, and just being so so tired and afraid of a recurrence, it was exhausting, and hard to explain to people. While being amazing, my husband wouldn't talk to me about how he was doing, though I know he did talk to his best friend / boss about it. 

I am really lucky in that I have a Wellspring in a reasonable distance from me, around an hour round trip by car - I've been taking some expressive arts classes there, and the friends I have met and made there, and the people who volunteer there, it's an amazing facility. I'm hoping to be able to volunteer there soon and give back. They have programs for patients, survivors and caregivers and if I lived closer I'd probably be there every day. 

I found out earlier this week that a friend I met through facebook, and have since met up with in real life, her husband has been diagnosed with cancer, and so I am hoping that she will let me be a support to her, whether its meeting her at the cancer treatment center for a coffee, just being there to listen, whatever. 
SpeedyStill
565 Posts
I can relate to the picture of an older man looking down at the mirror with a lost look.
I like the saying the higher you are the harder you fall.
I will tell you that mans story. He had a vibrant family with two children who were now off busy with work and ther own family.
His wife was unhappy and asked him to leave several times. This man was not willing to leave a marraige where he still loved his wife even with several years of a rocky relationship.
One day his wife comes to him and says that she is moving out.
This man is blown away by the thought that the marriage was over that his wife of many years did not love him and he was now left in a house all alone. The shock was too great for him and he fell into a deep depression. Then he starts to question what he did wrong to end up alone during the fall of his life.
Having had Cancer and dealing with new health isues he is completely lost. 
This whole family is disrupted by this split and they do not know how to handle it.
We don't miss what we never had.
People living with a lot less than this man has, are happy. Why because money and possessions do not make you happy.
Now this man has fallen out of the connections a marriage has always provided.
Nobody comes to visit him and nobody calls him.
He has dedicated his life to his family and can not understand why he is on this road.
What I would say to this man is this.
Shave the beard get a haircut and always look like you are in control even though this is not completly true. Do not look like you feel. 
People with some exceptions do not care that you are feeling bad. They are more concerned with their own life and their own problems. This may be harsh but unfortunately true. 
Maintain your hygiene.
Dress like you are in control.
Never leave the house without looking your best.
Our mind if idle will gravitate to negative thoughts. Always keep your mind active. I listen too a lot of music and even sing along. If you are listening to music, your mind is focused on the music and not negative thoughts. I watch TV, spend time with YTube, and watch movies on Netflix and other platforms.
Get out of the house as much as you can. A trip to the Mall or one of the stores in your neighborhood. 
I spend time with Cancerconnection most evenings
I have a few games that I play on my phone and Tablet. Some of the games Golf, Racing Car game, Band of Brothers and Baseball.
There are games for every interest.
How do you keep a child growing up out of trouble, you keep them busy with sports etc.
This is the same with loneliness, if you fill your day with activities you like, you do not have a lot of time to be lonely.
Hey I still have my dark times when I miss what I used to have but that is natural and should not worry you.
There are times when it is good to vent you feelings. Suppressing them is not good. They build up until you explode and you do not want to go there.
This is a long post however this is an important discussion to have considering the increase in poor choices people make when faced with the deep pit of lonliness, you can fall into.
The key no matter what happens is that you are as important as anyone else on this planet.
Keep the fire burning and never give up.
SpeedyStill 
Scared
55 Posts
Yes I feel alone and isolated all the time...seems everyone in this family has their own problems. 

Two of my sons call me for support as they go through anxiety due to either work or home life.  My daughter expecting her third child puts on facebook how mothers need more support and understanding not just a bath or manicure...burnout is real.   Wow!  What's happening to all of us?  I had 4 kids. Yes sometimes it was rough but I was thankful for my kids who were happy and healthy.  I did what was best for my kids and even though we didn't have much they were very happy  kids!! We get through the hard days and be super happy on the good days.   My youngest just got married and although he and his wife are working long hours at the moment they still find the time to call or text to see how I'm doing.   

I barely see anyone anymore.  Why is this society on a massive pity party???   And most of them are healthy.

they make me feel guilty for having my own breakdowns.   I have literally lost a part of myself.  I am still  looking after my 92 year old father's needs...making his appointments, driving him to doctors, hearing centre, stores,  and I do all this while I'm in pain listening to his criticisms,  complaints, judgement .  Seeing him struggling to walk with his cane or Walker I know he's hurting too but I keep quiet and let him blow off steam.

but at home when I'm still hurting,  and the house is empty as it is every night, I feel so tired of it all. I dont want to do this anymore. Yes I watch tv, read books etc. Etc.  But there are times when I cry seemingly for nothing.  Being the only girl in my family crying was frowned upon so I hide from my husband when I'm going to cry.  Being alone at night gives me time to cry without judgement too.   The dangerous part is when the crying leads to hopelessness and I start to think that this is just the beginning of the end.  I'm unbalanced like one of those misfit toys  that don't turn out right.  I asked the surgeon to just take both breasts so I'd be even but he refused. You think I want to go through another operation now?  Nope . I'm stuck in this deformed body now and I'm supposed to make the best of it  right? Because after all, I'm still alive.

 
CentralAB
995 Posts

Lianne_adminCCS:
Excellent point CentralAB‍ . While loneliness can be felt, it is often a reality for many as well


Lianne

My experiences, from the "caregiver" standpoint, are  understandable. My past career of nursing tells me this. Home care should  take a huge load off of the primary care-giving family member.  I know this because I have done it myself in my nursing duties of the past. "Modern" home care is miles away from the older models that I know.

Even back then, it would cost a lot of money for a family, or a couple, to have 24/7 home care.  Current financial models for "home care" only serve to isolate caregivers. The Caregiver  cannot  go anywhere or get a break. Unless they have $20-$30 per hour to pay someone to sit with whoever they are looking after. This is when "getting a break" is in and of itself a burden because of financial implications.

Our government has seen fit to make a two-tiered health-care system. That only allows those with more, to have more. Today, anyone can hire 24/7 home care for a day or for weeks or months. BUT thats only if they can shell out approximately $35.00 per hour to cover for the staff that would be coming in. Has anyone ever figured out how much the primary caregiver saves the system? What would happen if they took into account all that labor?

Our so-called home care system has seen fit to force primary caregivers into doing what 3 or more home care staff from a home-nursing care agency would be doing. Factor in all the shift-changing of the agency staff. There would be approximately 3 staff to give the full, 24/7 care that the current, primary caregiver is providing. It would cost at least $2500.00 for a three day respite break for the caregiver, at today's most common rates. And that's the nursing care.

Sometimes  house-keeping or other non-nursing things  would mean  extra staff. Extra dollars on top of the already unreachable costs of the nursing staff for most people. Add a fourth staff to the mix, it would cost around $30.00 per hour. Extra. For $3000.00, or so, I could get away for a much needed break "anytime" I want to. I know one family that pays $7000.00 per month for home care around the clock.

Everything that the primary caregiver does, is  isolated from the rest of the world.  There is no way to have a patient-centered practice, or outcomes.  "Costs" being the central business unit for each "patient." Its all about the business unit. In fact, my wife is the "business unit" to our health-care system, and I am not even entered into the mix. There is not a single penny out of the health-care budget for the caregiver. It matters not what problems the caregiver has. It doesn't matter about the state of the caregiver's health. Physical or mental. The caregiver still has to do the same job that it would take at least several other people to replace them.

Once, when I got burned out, I took my wife to emerg because she was having symptoms that were hard to control; they tried to make me take her home right away, and I had to refuse and tell them I couldnt do it until I had a short break. (two days over a week end). There was quite a debate over it.  Rather than any kind of empathy or sympathy or checking to see how I was doing, etc, all I got was things like "you need to do the right thing and leave her with people like us..." (meaning I should dump her in a nursing home), and I said to the "nurse:" well, "if you consider the cost of two days in hospital with the costs of having her put into a nursing home; there is no question about which option would cost less." (I was mocking her opinion about "leaving her with people like us)."

Another staff said "she doesn't have long, you'd better prepare." (that was more than a year ago).

And as if that was not enough, I got a call the next day from the nursing staff saying that "we cannot keep your wife safe here." (she was wandering a lot then). But when I tried to take her out, they got all upset over that! Three staff came bustling in, and made me sign a form to take her out "against medical advice," and all I could think was, "if they can't handle her with all those nurses there," what right-thinking person would think that one, well-worn out man could do what they called me, and told me they can't do?" Can you imagine  how isolated I felt then?

Its gotten to the point where I am scared to go to anyone in the health care system for anything, and that magnifies the isolation. New legislation that is coming out only serves to make the isolation for caregivers more acute. (think MAID, and other legislation).

The only thing that the health-care system has not tried to start a conversation with me about, is "how can we help to keep your wife at home, and looked after ?"

I know that many caregivers can relate to what I am saying here. I am speaking for them as much as myself. I am one of the "lucky ones," and I have found ways to cope, and things are more stable for now, which I am grateful for of course. But the isolation factor carries a certain stigma in society nowadays too. Many family and friends, as time goes on, stop coming to visit, or calling. They don't seem to get it that we dont go out or call as much because we can't, and all they think is that we "don't care anymore." One person even said to me "as far as I am concerned, she is gone already." I cant tell you how deflated I was when I heard that one! Its been months since that person has called. (and all because my wife CANT call - it has nothing to do with wanting to or not).

Its all ok the first year or so of the illness when get well cards, and flowers are appropriate. After that it goes downhill each year, until at last, no one bothers, unless they are getting paid to bother. We cultivate a death-denying society. People are often  very uneasy talking about death and dying. Caregivers need another person to talk it through with, but the people in their life go quiet. They can't cope with it.  And I dont have the energy to be their baby-sitter or counsellor, and the whole thing spells ISOLATION.

We are fortunate, because I know how to deal with isolation. The isolation can become some very constructive things, such as education and hobbies. I am one of those people who never has "nothing to do." To me, there is always something. I have learned that using isolation to define me doesn't work.

Please, don't misunderstand what I have written above. I am not falling apart, and I am not unhappy. As a matter of fact, I am very proud of myself, and the one thing that helps is my wife and I love each other more each day. What people do or dont do does not affect my happiness anymore. We have many, wonderful moments together.

I have experienced  one of the worst traps for caregivers. Isolation, (or at least seeing things that way) is real. Caregivers can be  fixated on intended/expected out comes, (anticipatory anxiety). They even start to catch themselves "failing." The all-too familiar corner we paint ourselves into becomes the biggest obstacle. Most of us Caregivers  call that "GUILT." "Oh, I didnt brush the hair, I didnt clean the nails, the dishes are not done. I, I,I...I this. I that. I have now reached the point where I can  look at this guilt and call it "I trouble."

I have learned that it doesn't have to go like this. I can make choices, and follow through on those choices, for any situation in life.

When the caregiver most  feels the guilt,  pressure, or stress  is when they can find the most meaning, in the moment. The greatest meaning, for me, is in an awareness of the moment, not in expected outcomes. Otherwise, my best intentions  become the focus of my "failure." As a caregiver, When she hugs me and says "thank you for everything" thats my meaning. Thats my meaning for when she cant do that too! It is  too easy to neglect my own meaning, the meaning of others, and the meaning of what I'll call "process." Can my life have  meaning in spite of its difficult aspects?

Its impossible to follow the "self-help" books directives to  "be happy;" One has to have a reason to be happy. And we do tend to find what we are looking for.

If you are a caregiver - struggling with the issues at hand, you  need a "measuring stick"  to help you discern meaning.  As in meaningful to YOU. I have found a way of locating this "measuring stick." Look at the lives of others who have gone through trying things, or similar things. (sometimes, for me its God, or this forum). When I do this; I find some of that "lost" meaning. I experience some kind of implication, I encounter someone new, with a story I can relate to. Its harder to feel isolated when this kind of connection happens.

I hope this post helps other caregivers to find their connection.
Nan1
54 Posts
My biggest rock as I am navigating through treatment has been my daughter.  She has been by my side every step of the way.  She was there the day I got diagnosed, she was there the day of my surgery, she took care of me for a week at her house and when she could not be there had here friends come and stay with me, she has been to every chemo appointment with me and calls me every day to make sure I am okay.  If I ever need anything she makes sure I have it.  She does all of this while living her own busy life of being in school and raising her 9 year old son on her own.  She previously was a Care Aide but was injured at work and can no longer do the job she loves and may I add was, and still is, incredibly good at.  I am so very proud and fortunate to have such an amazing daughter.  I also have moral support from my son and husband but it is different..they are always there to help if I ask but at least if I ask they will do it.  I also have a wonderful network of support from my employer and friends at work who are always there for moral support. I find it very easy to talk about my situation as talking about it and being honest about my feelings help which eases isolation and gives me the strength to forge ahead.  I get a great deal of support from the nurses in the chemo unit as well and from all of the amazing people on this site.  

 
Cynthia Mac
3080 Posts
Thanks again, CentralAB‍ ! You make some very valid observations. I have had a good friend tell me that when the time comes, I should apply to Dad’s estate for a caregiver’s stipend. Not sure whether I’ll have the chutzpah to do it when the time comes or not, but thanks to you, I now have an idea of my worth.

My Dad is still at the stage where I have to respect his autonomy, so I am still able to let him do things like dishes and minor housework, like damp mopping a floor (well, until his fall last week - my aunt and I have done that since). And HE has isolation and loneliness, too. Right now, he’s on some pretty stiff pain meds, and can’t really drive, so we’re starting to “whittle away” at that autonomy - all of a sudden, he can’t just pop in to the bank, and I’ll be adding that to my role.

Scared‍ , I had a meltdown yesterday after getting home from my Dad’s. Everything I was wearing (including my hair, which doesn’t come off) was rank with the smell of tobacco smoke. In addition, I had learned that my brother’s “visit” was really to borrow Dad’s car so he could shift some vehicles around (Dad’s car has a trailer hitch.) That was also the day I learned my sister has asked Dad to watch her dog (starting today) while she goes on a trip. I asked Dad what he’d do if he can’t manage her dog in his current condition, and he said, “call you.” Between feeling like it’s all “on me,” using a neti pot to clear out my sinuses from the smoke after coughing so hard my throat hurt, and having to wash my winter jacket for the second time in a week, I lost it. Perhaps it was a pity party, maybe it was a sign of burnout. Regardless, there was some pent-up frustration.

As Brighty‍ Points out, it doesn’t take long for resentment to build. Out of all the emotions, anger and resentment are the most damaging to us physically, For me, between my siblings’ co-operative nature and the tobacco smoke, keeping those emotions at bay alone is a full-time job. Keeping Dad’s needs tended to and transporting him to appointments is a solid part-time job, so my own life is getting “squeezed in.” After apologizing to a friend yesterday for the state of my house, I explained, “My schedule these days is “I got dishes done on Monday, and Tuesday, I got the dishes put away and the litter box cleaned.” I am listening to my meditation and mindfulness books almost on an endless loop, and I told the oncologist’s office yesterday that I will be seeking out counselling at my next visit to the hospital with dad. (He’s balking at the idea of a fall monitoring system, so this isn’t going to get easier in any time soon.)

Oh my. Reading back over this doesn’t even sound like it’s me.

May each of you be able to find some inner peace in your day today. (There. That’s better.)

 
Runner Girl
1509 Posts
SpeedyStill‍  and Scared‍ I send you both the biggest hug, you are not alone.
Whitelilies‍ I love your straightforward way of getting right to the point, you're awesome.

My worst loneliness came during my chemo treatments, when I was not alone.  It was during these times, when the ex fiance would not look at or speak with me, instead he would either leave to go get coffee or food or would sit there on his phone.  He went thru the motions of pretending to care for and about me, my gut knew this and it hurt me to the core.  I am glad to be rid of him now.  

I am very grateful for everyone on this site, you have all become my extended family, I care a great deal for all of you.  It's nice to be "surrounded" by people who get it and care.

Runner Girl

 
Deb1313
34 Posts
I am typically not a lonely person although I spend a lot of time alone. My husband describes me as a cat and I am an introvert. 
I am lonely for my mom only. Since she dies on Nov 10, I have been witnessing typical human behaviour. It almost seems fake how for one week, all these people rally around a person and the day after the funeral - crickets. I received more texts and phone calls the week of and virtually nothing this week since my mom’s funeral last Saturday. Since I predicted this months ago, I am almost amused by it.
I generally prefer to be left alone but I often wonder why people scatter after the funeral. It is during this time that people typically need others the most as this seems to be when the real grieving starts. I was so busy between my mom’s death and funeral that I didn’t have time to really be in the moment like I am now.
Why did people text constantly last week asking me “how are you” but this week nothing? I guess they must feel that all is suddenly well. It isn’t - not even close.
I read a blog online last night that talked about 100 things that happen when your mom dies. I have experienced 25 of them already but was comforted by the writer and all the responses in the comments. There really is comfort in collective pain.
Hi everyone. I found writing every day extremely helpful to the point that I went thru my journal and used my daily thoughts to write a book about dealing with my prostrate cancer. It is available for free on my blog and I continue to post poems about men, loneliness, spirituality, love, etc. The blog is at billmartin.net.
Cynthia Mac
3080 Posts
Deb1313‍ , Your post resonates. In the last two weeks, I have had one former colleague lose a husband, a good friend lose her mom, and another good friend who is about to lose her son to cancer.

Knowing of what you speak, I make a point of contacting each of these women, even if it means putting a note in my calendar to do so. 

We’ve had many discussions on the site about people “disappearing” when they hear that their friend or a loved one of their friend has cancer. To me, that’s a little different - in those cases it’s more a case of the informant not knowing what to do or how to help, or fearing that the news is “too close to home” for them to cope. After a funeral, I think it’s more a case of “the moving on of life” then of them “scattering.” I don’t think that it’s that they can’t cope, or that there’s any ill-intent involved, it’s just that they are a little more removed from the situation, so they return to their normal activities sooner than you are able. Sometimes, too, they can be offering “room to grieve” especially if they know you’re an introvert.

Littledeerbill‍ , thanks for the reminder about journaling. It has been a helpful tool in the past, and it’s likely time for a revisit.
Melanoma
31 Posts
Very good topic and a lot of discussion.

What I found is cancer support groups are now few and far between 
Lots of support groups in major cities , but once outside of that bubble your are more less isolated from any outside support .
I have posted on line and looked for support groups in my area , none 
However there are support groups and people you can talk to on line 
Anyone with melanoma, the melanoma network of Canada can connect you with peer support 
I have looked into it , but to date have not advanced to that stage of support but I know it’s there .

thank you 
Hi Everyone,

My children were young when I was diagnosed.  My husband and children would come see me in my room, and tell me all about their day, check up on me, bring me snacks and special notes, cards, and pictures to cheer me up.  They were wonderful the whole way through.  But,  for awhile when I was bed ridden it felt isolating being in the bedroom while life was going on throughout the rest of my home, outside of my bedroom.  Even though I was seeing my family, I wasn’t involved in the flurry of daily activity that comes from having three young children (for what felt like a very long time).  I am a very involved Mom, so it was lonely, and slightly isolating to watch my husband kind of take on my role as well as his.  I love him so much for being the amazing man in my life that was willing and able to do so.  It was great that he could do this, especially for my children, but a little hard letting go, and I felt a little lost not being able to do the things that I thought were the defining traits of being a Mom.  
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.🌸
law
428 Posts
Loneliness and Isolation may certainly be 2 areas of experience for the caregivers, friends and family, pets, and the individual during the cancer journey.  I tended to prefer being a hermit when suffering my worst pain and agony, yet really did appreciate friends and family being supportive in spite of my chosen solitude. I wanted to isolate myself and just get treatments and cancer over with and rejoin society upon my recovery. Only my pet cat seemed to sense something was wrong. She approached cautiously and loyally. She is a cool cat for sure.
I was rarely lonely as too much attention from others caused me exhaustion and anxiety. BUT, no one would let me hibernate!!  I think what I learned about myself was to accept my vulnerability and all the loving, necessary assistance from friends, family,and neighbours.
law
SpeedyStill
565 Posts
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 
SpeedyStill
565 Posts
perot‍ 
Love your attitude. It Iooks like you have accepted your life and are able to move forward.
SpeedyStill 
Aries
542 Posts
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! 🤗
CentralAB
995 Posts

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.
CentralAB
995 Posts

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. 😀
CentralAB
995 Posts

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!
ACH2015
2007 Posts
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


 
SpeedyStill
565 Posts
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 
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
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