Let's Discuss...talking about cancer

As time goes and any my husband continues on with his battle the people I can actually talk to gets smaller. I can't really I feel tell someone how I am feeling inside. Often it is met with 'this is too hard'....no kidding it is hard. 

Cynthia 

It's only on the site that I am able to talk about this stuff.  No one else in my life wants to hear about it.     

Today I am feeling so overwhelmed.  I am watching my wonderful silly man loosing ground.  He is on his 2nd Phase of a Cancer drug trial.  The first phase lasted 2 years.  Without it he more than likely would not be with me. He has renal carcinoma. The side effects beat him up pretty badly.  It blew up his Thyroid.  Next it blew up his pancreas.  He is now --what they call a Type 1 Diabetic.  Insulin 5 times a day and reading  his levels about 20 times a day. He has been left with double vision that none of Doctors seem to have an answer for. We have to travel 1000 km round trip every 3 weeks for treatment, labs, meeting with the Oncologist and saying hello to all the fabulous Nurses who try so hard to make both of us feel so much better. We have to stay over for 2 nights maybe 3 due to the long drive up and over 2 mountain ranges.  Winter is coming.  Oh dear.
Today, I am making his homemade chicken soup to put down in the freezer for those days when his tummy is so upset.  I am also baking up some Pumpkin cookies for my Grand Daughter and some Molasses cookies for my daughter to take to their place for Thanksgiving Dinner on Sunday.  Then off to Vancouver for his next infusion.  We just had our bathroom renovated from a bathtub to a large walk-in shower.  I can see the day coming quickly when I will need to be in the shower with him to help.  He is slow to walk and it all hurts by the end of the day.  My house is a tip.  That doesn't stop him.  He is out painting our neighbours house.  Bless him.  It keeps him busy and his mind off the rebellion going on inside his body.
I need to dig up my potatoes.  Plant my garlic and tulip bulbs.  Please God don't let it snow until the end of November.
You asked do I have someone to talk to.  I have a Clan of girlfriends who arrive on my doorstep..individually or en mass. There is usually a box of wine tucked under someone's arm. I have found a friend digging my garden.  She knew I just didn't have time to weed.  Well the weeds win every time. I feed her cheese and crackers with a glass of wine.
It is not very often I feel this sad and scared.  Today is one of them.  Thanks for listening.

• Who do you confide in about your diagnosis?

I told my family, some of my friends and couple of cancer survivor . If I'm asked if I have cancer, I will say yes, otherwise, I have a brain tumour or I'm fine.

• Do you prefer talking in person, over the phone, by text, or email? How has COVID-19 impacted this?

I prefer talking in person, but with covid around that is difficult. So now zoom is the best next option for human contact. E-mail is the another option, but still missing the body language, voice and face. I got exited to get my flu shot, I hate needles, only to see a someone I know outside my family.

• What is most helpful when you are confiding in someone?

Feeling comfortable with them, and know that they will really understand. I don't need to be told that everything is going to be fine, just to make me feel better. I need a hug.

My husband and I got diagnosed with cancer within a couple of months of each other, so we couldn’t “cover up” for each other.  I just told most people that we had some serious health issues and left it at that.

I’ve  never been very comfortable making phone calls, so email was, and still is, my preferred means of communication.  It also means that if I burst into tears while writing, nobody knows, nobody gets embarrassed.

And I find I communicate most with people who have walked in my shoes: a couple of good friends who lost their partners to cancer within the past few years, another friend who has been fighting it for 10 years or so, and - last but most certainly not least - the awesome people on this website.

 

• Who do you confide in about your diagnosis?  

I tried to tell everyone including family, friends, church friends, and work colleagues.  

• Do you prefer talking in person, over the phone, by text, or email? How has COVID-19 impacted this?

Other than family and very close friends, I shared my diagnosis by email. With COVID, it made it harder to depend on word of mouth.  And I forgot people, so when I remembered, I emailed them the diagnosis and asked if we could book a phone call.   I gave the friends and work colleagues an offer to be updated on my progress b email. My daughter would update the email distribution list when I wasn’t up to it.  Many were glad of the offer, and some I didn’t hear from about that, so assumed that wasn’t necessary for them.  I like all the different modes of communication.  It depended on how I normally communicated with them, the weather (because of COVID), how I was feeling and/or how far into treatments  of my chemo and radiation. 

• What is most helpful when you are confiding in someone?

That they had no expectations around how long it would take for me to reply or if they didn’t receive a reply.  Their attitude of Hope.  Their sense of humour around difficult issues. Their perspective on why I may be feeling the way I am at the time.  I am very self-aware, but any input is always appreciated because I may not pick up on some things.  And it was good that they recognized that I was unable to be their support person at this time.  
​​​​​​​

Like 3northernbears‍ I am losing interest in talking to others about my husband’s breast cancer.  It’s down to a very small circle of family.  I like phone and email. I hate texting. I wish I could see people in person but with COVID that is really limited.  
what is most helpful to me is reassurance that I am doing a good job as the caregiver.  Distraction and humour also welcome!

When I was first diagnosed with prostate cancer I told my kids, sister and a few very close friends.  I quickly realized very few men talked about PCa so I put it out there to all my friends.  I was shocked to get many replys saying "you have the good cancer" or "thats the best one to get" "or you will be fine".  Soon after I found out I had advanced metastatic non cureable PCa and according to the stats I had a 28% chance of living 5 years.  I was 53 at the time.  I made a commitment to myself I would not stand back and say nothing.  I have made it my only goal to talk about it as much as I can and make men and women aware that PCa is not the good cancer, its cancer.

Covid has made it hard to keep getting the word out, but I do what I can like dying my hair blue on Sept for PCa awareness month.  I attended monthy support group meetings but they are gone as well.  I am on a couple facebook groups and of course this site.

My kids, sister and close friends are my support and have been awesome.  they let me let off steam about the miserable side effects of hormone therapy.  They are my lifeline.  Oh and my dog, she is the best.

I am also a long term type 1 diabetic (48 years), chronic high blood pressure, asthma/copd, diabetic neuropathy (nerve damage) and celiac.

Peace Love Cure.

Roy

This is a great topic. I have read everyones posts and wanted to reply to each one.
I am a 10 year Survivor of Non-Hodgkins Lymphoma. 
In the past three years I have been diagnosed with three health issues and at least 1 mass on my Kidney could be Cancerous. 

Who did I confide in and who do I confide in now
During my Cancer experience I met every time after each treatment a Psychologist provided by the Cancer Center.
My brother and sister were very open to let me vent with them.
I do not have close male or female friends except my wife that I would feel comfortable opening up too.
Of course this is my MO for my entire life.
I can not say very much about this experience because 1. the time that has gone by and 2. a lot of it was a blur because of the emotional ups and downs.
I do remember the drop off point. 5 years, now you are in full remission or you are Cancer free.
Don't even mention Cancer to friends or family.
You are healthy now don't take about your pretend long term side effects.
Your new world after Cancer treatments and now you are in another new world.
In the past 3 years I have been diagnosed with the three health issues mentioned above.
It is hard to get any empathy, everyone is exhausted from the first go round.
My brother and sister have continually been there for me.
About 2 years ago I became a member of Cancerconnection and here I found the empathy I so desperately needed.

I most definitely like to talk face to face with people l can handle a group but I prefer one on one conversations.
E-mail has kind of died as a social communication tool at lest in my world.
Texting is for those people who want to communicate with very short messages. I find that people hide behind this tool.
I do not like it at all.
The value is advising pick up times or where time is an issue and especially in a business situation where efficiency can help employees to be better time managers.
I like talking to people over the phone but this is becoming obsolete also.
My family don't phone they text me. How my world has changed.
Covid has intensified the feeling of loneliness for me.
Because of my age and my health issues I  definitely do not want to get this Virus.
I do enjoy posting and commenting in Cancerconnection because it is an open and comfotable place to be.

Empathy for sure but most people including me do not have all the skills to be truely empathetic. My first mental response is what can I say to make this person feel better.
Looking back the most important thing a person can do is just be there for me. I am happy.
You have made me feel important just because you are you.
"Attention" a crying baby or a sad looking dog tell us how important this is.
Wishing for everyone to have a little attention and don't forget to do the same for someone else.
Always 
Speedystill 

I believe that life is about having stories to tell, and, sharing these stories brings meaning and reality to our experiences.  So.  Yes.  I have shared my journey thus far with anyone who wants to listen.  I started a journal on CaringBridge.org and set up a separate Facebook group so that my friends could post relevant stories, comments and I can keep them up to date on my Cancer ups and downs.  In many ways my diagnosis has brought my family closer - I have three brothers and, they have surprised me with their attention and compassion.  My friends have set up a 'mealtrain' and, honestly, I've put on weight rather than lose it.  They come by to go for walks, help me in my garden and remind me that I'm still me when my brain is foggy from Chemo.  They show up at my door uninvited at 8 in the morning to help me out of bed or make sure I eat breakfast and drink enough.  It has been humbling to say the least.

While face to face is always preferred, I'm comfortable with Zoom, telephone and/or email.  I feel lucky that we have these options and use them based on how I'm feeling.

I am most comfortable with people who do not play down the seriousness of my cancer but, listen to what I have to say, empathize and find ways to help me out.  Even if it's to touch base with me via email, it means something to me.  So, I guess validating what I'm expressing rather than minimizing it.  That keeps their defense systems intact - but not mine.  I am also comfortable with my pragmatic friends and of course, love a sense of humour. 

thanks for these questions.  This is how I am answering them today...tomorrow...who knows?

Cheers
 

My journey started in March of this year. 

My husband knew all my appointments -mammogram, ultrasound, needle biopsy...When I had my lumpectomy scheduled, I told my immediate family- my kids, first, and then on a FaceTime call to sisters and my mom.  I would have done that in person, but we were on lockdown due to the pandemic.  I called  two of my closest friends and my Manager, spoke to my colleagues by phone and FaceTime on many occasions.    I consider my colleagues- three lovely women - my friends.  I also told my neighbour as we often chat outside and I have come to know her over the years. 

Covid did present challenges, as family and friends could not visit.  Person to person dialogue, physical contact (hug, touch),  silence together when words failed, just hanging together,  or just physically being with eachother was not a possibility.  With that I often felt alone.  
My immediate family -husband and children were awesome and with me. My other family and friends were distanced because of CoVid. Telephone or FaceTime would suffice- but it’s not the same.

My cancer diagnosis was still very personal (and surreal) to me and I was and still am, trying to understand what it means to me.

Now three months after treatment, I have shared the story of my diagnosis on Facebook to reach my other friends and relatives with my story.  I wanted others to encourage their loved ones (and themselves) to take the time to care for them selves - be on top of scheduling those mammograms  (when if age)!   I was not taking the time to schedule my mammogram and put it off a year and a half because life seemed too busy...and this mammogram and subsequent ultrasound, detected invasive ductal carcinoma, a tumour the size of a tip of a pen. 

My preference is face to face where conversation can go at a natural pace and in physical presence of eachother, where emotions and expressions are part of the language asks can be seen.   Face time in light of the pandemic - is next in line or the good old telephone!

I lam most comfortable to talk about the cancer diagnosis with those who I feel care, those who will listen and not judge, those will validate whatever I am feeling. Cancer connections is that place.  It’s a safe place to have a discussion!  
:) 







 

Interesting topic, Lacey_Moderator‍ ,

My journey/diagnosis was recent and very unexpected.

I decided to tell only a couple of close friends and those on a "need to know" basis. The most difficult person to tell was my Dad, whom I have been a full-time caregiver for the last six years. We lost my Mom to cancer, suddenly, just prior to my becoming my Dad's caregiver. 

I decided that I wasn't going to share this with acquaintances, neighbors and people that are not regularly involved in my/our life/lives. I feel that the best support and encouragement will come from the individuals that I have shared with, and the medical team that is caring for me. I really don't want any unsolicited "advice" or to be regaled with other people's experiences, as this is *my* experience and reality, that is unique to me.

This site seems to be a good place to share experiences and such. COVID-19 has certainly changed the way we are able to communicate with others, I might have approached this differently if we were in different times.

Right now, for me, keeping it close seems to be the best solution. As my treatments are about to begin, I don't know how "visible" my illness will become, at which point I may have to rethink whom to disclose this information to.

I don't know if my current approach is the "right" thing to do, but this is what I am comfortable with at this juncture.

I wish everyone well,
mo

I don't really have anyone to talk to about the cancer, because my family don't want to talk about it.  They are unwilling to face up to the fact that I have terminal cancer.  I'm being annoying or a burden if I try to talk about it.  So I generally don't talk about it.  A cousin tried to tell me I should get a second opinion about the diagnosis of cancer, because he heard of someone who was told they had cancer when they didn't have the disease.  A former friend kept saying that the doctors could be wrong about the diagnosis.  It felt like the rug was being pulled out from underneath me.  Although I question my doctors, with all the uncertainty caused by the cancer, I have to depend on what the doctors say.  It doesn't mean that I don't have my own opinions but I do have to trust the doctors to a large degree.  Everyone minimizes my symptons, often saying it is just because I'm aging.  Well, I'm only 59 going on 60 years, so some of the symptoms are unusual for my age.  It is almost like "how dare you have cancer."  I know I sound resentful, and I am.

When I was going through diagnosis of my breast cancer, only my husband, my boss (who is a physician), one sister and a close friend knew I was undergoing tests. Once I had the results I spoke by phone to my mother, message chat with my sisters, and other family members, my immediate colleagues in person, and my workplace by email, and then I told my Facebook family when I attended my first appointment as a cancer patient.

I found people engaged with me in different ways. My family is across the Atlantic so phone or video message is our go to method of chatting. My youngest sister came to visit before my surgery and helped me finish some decorating in our refurbed kitchen (my distraction project through diagnosis), friends arranged coffee dates and offered help, although there were some who backed away. I had a few friends who had been through treatment who were really helpful to me early in treatment. 

I used Facebook to provide updates on my progress. Part of this was my wish to take the secrecy out of cancer treatment, so it wasn’t such a scary prospect for someone, part of it was laziness! I knew I couldn’t keep up with updating people separately! However, this was only ever scratching the surface...I never talked about all the side effects and the bad stuff. 

This is where I found my team helped - being able to talk about the crappy stuff (literally sometimes) with the nurses and the therapist really helped. This was face to face and that was important too.

cancerconnection was a huge help too - when I joined before meeting my surgeon, I felt like I was wrapped in comforting arms. Everyone wanted to help, make me feel comfortable, and the empathy was just awesome. I liked this place so much I haven’t been able to leave, despite finishing treatment and doing well post cancer!

 I have made it my only goal to talk about it as much as I can and make men and women aware that PCa is not the good cancer, its cancer.

That's a worthwhile goal.  Prostate cancer is a whole class of diseases, depending on which particular "prostate cancer mutation" a tumor has.  And as you know, some of them are really nasty.

Keep on talking! <g>

.     Charles

I talk about my cancer diagnosis quite openly with the people I interact with whether that be my family, colleagues or even my customers.  But what I've realized pretty quickly is that some people are able to be supportive and empathetic while others I just make extremely uncomfortable.  Once I know who's who, I'm quick to adjust what I say.  I've found this a good approach though.  Sadly some of my closest friends are not capable of being there for me but I've found these beautiful acquaintances who unexpectedly make me feel cared for supported every time I talk to them.

A bright spot in this experience has been the support of my family.  I've always been close with my mom and that continues.  My sister, brother and I talk way more than we used to.  But by far the biggest change has been with my dad.  I had almost written off any meaningful relationship with him when I found out I might have cancer.  After a first awful conversation in which he basically condemned me to death based on microcalcifications on a mammo (he's a doctor) and simultaneously somehow made it all about him, he's really turned it around.  I've had more better conversations with him over the past 2 months than we'd had over the past few years previously.

I love one-on-one connections.  In person is great but not possible right now so FaceTime and the phone work well.  Text is good for people who aren't that close to me but want to let me know they're thinking of me.  I appreciate short notes even if I don't want to talk to my step mother-in-law every day!

This forum is great.  I was reluctant to post at first but have spent much of the day reading and responding.  It's helping.  Thank you all for being present with me on this journey.

!. Who do you confide in about your diagnosis or your role as caregiver? The first person I told was my mom. Then I think it was my brother then my supervisor at work.
 
2. Do you prefer talking in person, over the phone, by text, or email? How has COVID-19 impacted this? I prefer to talk in person. My one Aunt I talk to by email. A few of my cousins and friends I use facebook messenger. My last 2 herceptin treatments were during COVID 19, not the same in the hospitals now. 

3. What is most helpful when you are confiding in someone? Truthfully, I just want them to listen and not speak. Because sometimes, and I know it's not intentional they just say the wrong thing. 

This site has helped me the most. People who've been through what I have been through are the most helpful. And medical personnel, I would have to say my Plastic Surgeon. I am so thankful he's been there for me.

Tilly59‍ 
I am still on the Roller Coaster ride with my emotions as described in an earlier post.
I was on a downturn tonight until I started reading this thread again.
You are not alone with your feelings. It seems like the so called healthy people like to be around other healthy people. Like with everything there are exceptions.
I think too that if you are sick and they feel that you will be back to your normal self soon that this is OK.
Terminal cancer and or a never ending dependancy tends to turn people away. Even friends and family.
The good news is that there are still good people out there who will listen and even be empathetic.
We don't have to carry the dark cloud by ourselves.
You have shared your feelings with this open Community and see you have helped someone else who at times has to look hard to see the light through the cloud cover.
Loneliness and pain can drag us down but not unnecessarily out.
Tilly59 I am not always with this Community but I have listened and heard your pain tonight.
Speedystill 

moplanb‍ I totally understand keeping your diagnosis to your inner circle. I did the same for some time. I Live in a small town and was concerned with People finding out. It eventually did come out but I’ve had nothing but support from fiends and acquaintances. I’ve had people reach out by phone, emails and iMessage to offer support. It’s been overwhelming at times and very comforting.
As for being “visible” during treatment, it’s not a problem. I bought a wig that was very close to my original hair style before I lost my hair. I walk outside every day and people have not realized I’m wearing a wig. Even my chemo nurse who is a friend of family and knows me well was shocked when I told her I was wearing a wig. People are constantly telling me that they are amazed that I look so healthy and if they didn’t know I was in chemo treatments (4 down, 2 to go) they couldn’t tell what I’m going through. I still don’t share much about how chemo is affecting me but that’s my battle to deal with. 
This group is a wonderful resource and support during this difficult time. Don’t worry about being visible or having people know. You’ll be pleasantly surprised at the support you’ll receive and how uplifting it will be when you need a boost. 

Charles‍ , I hear you.  I actually had a doctor tell me I was “lucky” not to have one of the “bad” cancers.  And I have stage 4 lung cancer!  What was he thinking??  

Keep talking!

I was fortunate to have a friend who stepped up to the task and became my main cancer supporter .
 

Kuching‍ 
Horrible your doctor say this! 
Had a couple nurse tell how much worse other patients have had it on my chemo.
I had to tell her this never makes me happy to hear others suffering more.
Does nothing to ease my less severe suffering or fear of greater suffering.
Plus it pains me to know others suffering more. I can imagine, I have pain.
What are they thinking?

Hi, County Girl‍ 

Thanks for your response. That is wonderful that you have had so much support! 

Most of my so-called friends disappeared after I quit work to become a full-time caregiver for my Dad. I wasn't available for lunches/dinners out, weekend trips to wine country or the cottage, etc. They just went on without me/us.

Fair enough.

I have lots of acquaintances and neighbors who I used to socialize with pre COVID-19, but I have seen from experience that they are not to be relied on for support. 

Not worried about "visible signs" such as potential hair loss, I ordered a bunch of really cute scrub caps on-line to style my potentially bald head! I was thinking more drastic signs that I may be unwell causing someone to inquire about my health. Do I tell? I really don't want to share with people who will only cluck their tongues with "fake" sympathy or share my diagnosis with others who are just bored and enjoy the "condo gossip". Unfortunately, I have witnessed this first -hand with people discussing others' health concerns. 

I do have a few( select) people that I have told, and they have been very supportive. For this I am grateful.

If someone were to see me (now, anyway) they would have no idea that I am unwell. It's likely that may change as time passes.

Hoping for the best...

mo

Hi. My name is Mike and I have survived two years of stage 4 colon cancer.  It has taken 3 operations and 28 on-going chemo treatments .  There are times you just want to walk away from the treatments and let this retched disease have it's way, but you have to think of your loved ones and how much they mean to you so no I"will not go gently into that good night" rather I will"rage,rage against the dying of the light". Sorry about that slip I love poetry and particularly Robbie Burns.  To everyone out there you are not alone reach out and touch someone living with this terrible disease,it really does help .  God bless everyone fighting this d*** cancer.