I do try to visit family so they do not have regrets of not seeing me during my struggles and covid. Like at Thanksgiving we had a large family dinner with most attending so we could all visit and share laughter, stories and memories. My one sister visits me every few weeks and we go to a local coffee shop just to talk. My nieces kids have accepted my disabilities, the loss of my eye and wearing an eye patch I am known as Uncle the Pirate instead of the uncle with cancer. They are all under 6 so I find it rather amusing.
I just don't know if I am doing things right, or even if there is a wrong way to prepare my family for the worst. I know I can still be around for a long time if my treatments go as planned. I just struggle now and then on how to go forward and when I should reveal everything I know. What are your thoughts?
We are in a similar age group! I'm 48.
So I'm stage 4 and May 2020 was given 4 months to a year to live.
I'm still here!
Actually given the size of my original tumor the doctors were surprised I didn't already have lung mets. I have a typically very aggressive form of cancer. But it is also a very rare form of cancer so really I think there are no “typically”.
Even now my docs tell me that lung mets are still very likely soon. The likelihood I see 5 years is next to NIL.
I have a CT on the 22 nd. We will see. lol. Feel like I'm betting with the doctors and their betting against me!
So I did tell my family. Actually my niece was with me for the phone call when the doc said 4 months to a year. Scary stuff that.
I'm currently pretty healthy. I have energy, appetite, feel better than the old me. We all kinda forget that I was given a terminal diagnosis.
I kinda think if you share the news it takes its power away. Get prepared to die then get on with living. People that love you will support you.
Sending you hugs.
I totally understand how you feel as I also struggled with who to tell. When I was diagnosed in October of 2019 I did tell my family. However, I asked them not to tell friends/aquaintences etc. “until I have results”. Well, I sure did not expect that two years later I am still fighting it, many results but not the final results (good or bad) that I expected. The cancer journey is a long one.
I try to stay as positive as I can because it makes our “now” more tolerable. At this point I hope I will beat the odds, because some do, and do as much as I can to live a “normal” life. But as you say, will I be here tomorrow, next week, next year? You will have “doom cloud” days but you will also have “no cloud” days….enjoy them.
All the best.
@NormRay ~ I just lost my reply am posting again. I cannot imagine what it was like for you as Sept approached this year….
I did not think that I could find a manual on telling family/caregivers about the time frame the doctor gave you for your life ending. I did find something you may find helpful. https://www.cancer.gov/about-cancer/advanced-cancer/talking#talking-to-family-and-friends-about-advanced-cancer
From my thoughts as a caregiver - if all of the hard talks and plans are done and I was able to spend time with my loved one then it would not matter to me. Ultimately the decision is yours and whatever you choose to do it is the right decision. My childrens father was given 3 mths and he lived over a year longer.
Hope this helps some,
@NormRay I cannot imagine the heaviness of all this on you. I wanted to share that we too have been wrestling with telling the family that Steven’s biopsy after his resection did not come back clean. It’s no longer an if but when and where the cancer returns. I’ve been attending the SCALE program for caregivers and the speaker last week provided some timely advice for us around how we keep this information away from loved ones to protect them but the unrest it can cause by keeping it from them. We’ve decided to let them in and keep them apprised. We’ve also started formulating some boundaries about how to talk to Steven about this. He does not want every conversation to revolve around him. He’ll set the ground rules that when there is something he needs/wants to share he’ll do so and its okay to ask how he’s doing “today”. Other than that he doesn’t want to be the patient but the Dad, brother, son and friend. I think you have to be very clear with people about your wants and needs so they can support you in the way that will make you days enjoyable. Sending you a virtual hug, Nicky
I think I told people more for me than anything about them. It took some of the fear away the more I said it. I got used to it. The power of those words. Course I’m in a current good health spot so maybe I’m just happy and greatful.
I recall being bald in the grocery store and I took off my skull cap as I was hot. I remember thinking it really didn’t bother me People knowing I have cancer.
my 7 year old niece was playing in the garage with her neighbor (young child). She says “ do you want to see my aunts bald head?”. I laughed a lot.
kids gotta luv em. Pirate! Lol.
Thank you all for your responses. It is a hard step for me and I wanted other perspectives from those going through similar situations or caregivers and their thoughts. I am still not sure when I will tell people but this gives me plenty to think about.
@Boby1511 I am like you that I do not care if people know I have cancer or not. In some instances it helps me explain my visual disabilities such as my eye patch or slight speech impediment. My issue is the stage 4 and telling people about my chances of survival. I know when I did tell family and friends at first of my diagnosis how some who I thought would be supportive seemed to fade away or disappear entirely. I am just worried informing some now about my life expectancy might turn others away too who I rely on now. With some of my family when I see them they avoid talking about my condition at all and don't even bother to ask me how I am doing. Even at our family Thanksgiving dinner a few didn't show up. I found out one couple didn't want to have to explain to their children what cancer was. I think a few suspect or have been doing research online about my diagnosis because they are the ones who treat me like I am glass and/or already dead.
I am at a fairly good point in my treatments so I don't have to pretend to some that I am doing better than feel like when I was having radiation with a chemo chaser. I am on immunotherapy now so the side effects are not as dramatic or noticable to others. My mother had a mental breakdown when she heard of my diagnosis. It became easier for her as time went on but I fear it will be hard to discuss the truth with her. When my wife was alive and she was diagnosed with cancer she did not want to know any of the details herself but agreed to go through chemotherapy. All that information went past her and directly to me so I could prepare as the caregiver. This is why I am in this dilemma and asking others for their opinions and advice. I feel it might be close to the time when it might benefit some so they can at least prepare for the worst. I am just still not sure when is the right time.
@NormRay I have terminal cancer, and my husband died of pancreatic cancer last year, so I think I can see this from both sides.
It’s definitely better to be Uncle Pirate than Uncle Cancer! And I totally understand your not wanting to be treated like an invalid. But I think, for your own mental well-being, you need at least one person who is close to you and whom you can really talk to. You can’t do this alone, but you certainly don’t have to share with everyone in the family.
Also, I would make sure all your paperwork is in order - will, living will, enduring power of attorney, and specific last wishes etc. Sorry, it sounds cynical, but if you get too sick to take care of it, it will make things a lot easier for your family if all that stuff is in place.
On a more cheerful note, many of us here are past our expiry dates, myself included. I celebrated the two year mark a few months ago. Hang in there, and enjoy life!
Can I give you a completely different perspective? As virtually the last living person in my immediate family.
I carry a great burden of guilt related to my mom's sudden and unexpected passing from untreated diverticulitis. I wish she had told me she was unwell - she hid it. I spoke with her on the phone the day she passed, she sounded rough and I asked her if I should send someone to check on her (she lived an hour and a half away, it was January and snowing). She replied “don't you dare”. So I didn't. Later that evening she passed on her way to bed from the kitchen. The RCMP found her in the living room. So many things I never got to say to her or hear from her. Would she still be here if I made the call or was she too far gone by then? She didn't trust doctors so refused to go. Fortunately she had all her papers in order and acting as her executor wasn't a terribly difficult task, other than dealing with her loss. The worst part was having to identify her at the morgue, because she passed at home alone and hadn't been under the care of a doctor it was a requirement.
Before she passed my dad passed from lung cancer and my brother and sister passed from separate car accidents.
When I was diagnosed with breast cancer I told EVERYONE. I didn't want the questions, stares, etc. I went to work everyday and needed the team to step up and stay home if they were sick while I was doing chemo. I am so very grateful for the support of my coworkers and friends (those who hung around) to help me get thru my treatment.
If you can, confide in some of the family, it may ease your burden and it will surely ease theirs whenever the time comes.
I think some people don’t ask how we’re doing because you haven’t told them. Maybe they don’t want to put you in the position to tell or lie.
I think it’s hard on you to harbour the secrete. If you lose friends over this then you probably don’t need those guys anyway.
I have a rare incurable disease that is going kill me. Sounds like a cartoon. I tell anyone now.
tell those you close to when your comfortable. It’ll save that discussion in your head. Tell or not tell.
I felt better after I said it a few times. Now all my conversations aren’t about cancer and dying.
it’s going be hard on your mom either way.
my niece (older) told her kids. Kids did really well actually. My newfew (9) wrote a lovely poem and even asked To shave his head with me. (We didn’t let him). My niece (6) has offered to take my cat when I die. It’s nice.
Take some weight off your shoulders. Hugs.
Thank you all again for letting me poke at your wisdom to gain access to answers that I could not recieve anywhere else. This is a great place to share experiences from others dealing with situations that the medical teams just don't know. They might have knowledge in dealing with cancer but do not have the experience like most of you do from going through our individual journeys.
@Kuching I do have all my papers made up already. I even have passwords and things to gain access to everything I do. This is very important I know from dealing with things after my wife passed. I made sure everything will be easier for closing accounts or getting information they might need.
@Runner Girl Thank you for helping to understand your perspective from both sides. With my wife she needed two heart valves replaced from radiation she recieved as a teenager over 30 years ago, this was treatable but prepared me for what could happen. Then during a chest fluid drain a biopsy of the fluid revealed her cancer that was treatable but not curable. This started to prepare me for what would inevitably come some day, but then soon after she was in chemo she suffered a massive stroke. I used to call her on all of my work breaks, she answered but couldn't talk. I rushed home to find her on the couch and called 911. She passed 5 days later and nothing could prepare me for that. I am glad her mother and brother were able to drive up from Idaho to be there with us. I see now that even if it will be a very difficult discussion that it might be the best thing for my family in the end. They will have more time to prepare and might open them up to other discussions they may want to have. I just want to do what I can now, if anything, to help them deal with their final grief and not have those regrets of “unsaid things”. I see now that trying to protect their emotions by not telling them everything might do more harm than good as I was hoping.
Remember this song?
"Don't you know I'm still standing better than I ever did
Looking like a true survivor, feeling like a little kid
I'm still standing after all this time
Picking up the pieces of my life without you (CANCER) on my mind".
I modified one word in Elton John's words. I don't think he'd mind given the circumstances.
From one survivor to another - keep moving forward.