How best to offer support for cancer diagnosis?
Years of smoking, even though he quit 30 years ago, has caught up to my uncle. His daughter, my cousin, is an only child and is devastated. Her parents divorced when she was a child.
I do not have full details, it maybe on his lung or liver, it is inoperable and the prognosis is bleak, they are going to try chemo. He lives about 5 hours away (ferry ride), my cousin is about 3 miles from me. He also lives in a Covid hotspot and travel in and out of the area is limited for at least the next two weeks.
After telling his daughter, he is not taking her calls any more. She is putting on a brave face and has only told 2 people, not even her son yet. I reached out to her last night, at that point I only knew he had had a biopsy, I did not know the results were back. She was glad I got in touch.
My family does not really have any experience with cancer. Our Granny died of Chronic Leukemia 28 years ago. My step Dad died of cancer 2 years ago this month, but it was very quick, diagnosed in October, died in November.
My Uncle was on the news in the summer for single handedly putting out a forest fire. An incredible feat for a 80+ year old man. Of the 4 siblings, he is the last one we would expect to get sick. He has been a weight lifter his entire life, he is very fit and strong. His full head of thick white hair is his vanity.
My question is how do I best support my cousin? We are not really close, but we are family and my family steps up in times of crisis. I have already suggested contacting our local Hospice organization. I know they offer counseling to families before and after death.
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I was shocked (not terribly, really) at the lack of empathy on my DH's side. He wouldn't go with me to appts and he only made it to 2 chemo infusions, and I'd get so sick---this was probably the hardest thing. He could NOT accept and handle it. I HAD to cover my bald head around him, he couldn't bear to look at me.
BUT--I had a LOT of friends, neighbors and church family who seemed to appear from nowhere and sent me cards, a bunch of flowers, bring in a meal...just when I needed it.
You cannot take your cousin's pain from them--but you can send love & prayers, and while that sounds hokey--it really WAS felt by me.
All the cards and notes I got were put in a scrapbook of sorts and I could look at them on down days. I'll keep those forever!
If your Uncle is going to do Hospice, they are wonderful to support you and be there when you cannot handle it.
Sounds like your uncle has had a good and even remarkable life. No one gets out of here alive--and I bet he is tougher than you think. And cousin probably is too.
Just being present is huge. I had about 5 people to whom I could turn, w/o question and they were there.
You be that for your cousin. There's not a lot more you can do.
((Hugs))
I appreciate your taking the time to reply.
Hospice is a bit different where I live than in the US. Our local organization is a NFP and it offers support to the dying and their families before and after death. Mum has found it to be a great help int he 2 years since step dad died. I am hoping my cousin connects with them.
I also hope her new partner will be able to be supportive. He is a great guy, but I do not know if he has any experience with death.
Be there in ways your COUSIN wishes you to be. Listen to her. Don't feel you have to find answers for her. Just listen.
I find something confusing. You say "After telling his daughter, he is not taking her calls anymore". Can you elaborate on that. That is very unusual, esp. given you say that your cousin is being "brave". You mention a divorce. Has the cousin remained close to her father and do they have a strong loving relationship? If that's the case he may need just some time on his own to decide how he wishes to proceed. If they are not close it is absolutely realistic to think he does not now want any sort of interference and "deathbed drama". If they have not be in touch he likely has his own "family" whether of blood or not. Those reconciliation things mostly occur in movies.
I would say this, first thing. NO ADVICE. Listen. People think that the best thing is to jump in and tell someone what to do. As was said in a book "When you get breast cancer you will be regaled with everyone's story about their great Aunt Irene, who ALSO got it, and.............................".
Getting cancer and dealing with it, making your decisions, is very personal. It is very different than our fears of it before we get it. There is quite ENOUGH confusion with all the various MDs telling you what is your best chance, blah blah.
Best way for Cousin to be supportive is to say she is there, and despite Covid will do what she can/what she is allowed to do. To let her know what he needs from her; she wants to help.
Let him make his own decisions re treatment and support his wishes. Just BE there and listen.
None of this "you have to be POSITIVE nonsense". That is further victimizing someone who is already a victim of cancer.
New treatments come along daily. Everyone's response is as individual as a fingerprint. Doctors guess, but as my oncologist said "it's anything but an exact answer". Tell him he will be utterly devastatingly handsome with a shaved head. So many men are. I can name a dozen. Remember that laughter helps. It isn't all about doom and gloom. Those I loved most during my fight were those who made me laugh hardest.
Wishing you the best in supporting your Cousin who will feel helpless now in trying to help her Dad. Cancer is one nasty disease. But as Alex just told us, even that disease had things to teach him about life. He lived longer than he could have hoped to, and he lived a quality loving life until weeks before his death. None of us will live a life untouched by cancer, and all that comes with it.
Good luck. Give him some time. And let him TALK. None of this "Oh, don't think that. Oh, that won't happen. Oh, there has to be another opinion." Listen to him. Support him.
https://www.usfa.fema.gov/training/coffee_break/021120.html/ ; The article addresses this issue.
How to support:
1. Contact the local Gilda's Club to see what support they can offer. I met with a rep after my sister died, and was literally overwhelmed at the support and programs. Different chapters may be different though.
One thing I recall they did was to have pot luck dinners for patients, relatives, and families, so they could interact and bond with others in similar situations.
2. How much of a role does your cousin plan to play? Given that her father is 5 hours from her, will she be taking him to chemo? If so, rides would be helpful; that's a traumatic experience for anyone. Again if so, stock the car with emergency gear, especially if they live in cold weather areas. Blankets, warm weather gear, water and food are helpful.
If your cousin won't be driving him, try to find reasonably priced transit, including through ambulance services which have non emergency transit. It would probably be too much to expect him to drive himself, especially after he's drained from a chemo session. Having reliable transit would be a real blessing.
3. a. She'll probably get depressed, and overwhelmed. What does she enjoy? Theater? Music? Think in those terms and take her for places that redirect her thoughts. Or get some of the mood CDs that create relaxation. We listened to CDs of waves lapping on shore when we were too tensed up to fall asleep.
3b. You mentioned possible lung cancer. If so, he may need oxygen. Research local DMEs and find one with which you're comfortable. My sister's oncologist prescribed oxygen but the source was a poor choice. The wheelchair provided didn't have removable arms, at a minimum.
If oxygen is involved, find out if it will be via stationary concentrator or portables, or E tanks, or all 3. Learn how to maintain the concentrators; it's easy, quick, and something you could do to help her (that depends on where he is though, and whether or not she brings him to her area or goes to his area.)
4. Chemo used to cause intense nausea when first started. I believe there are mitigating meds now, but just in case, perhaps you could plan to be with her after the first few weeks (again, assuming she brings him closer or she moves closer to him.
5. Chemo and/or rads changed taste buds; my sister couldn't eat most of what she ate before, but she did like thickened juices, like apricot juice. These are the times when nutrition is a challenge, but not finding something nutritious only allows the complications of rads and chemo to flourish.
6. My sister's friends also came over to take out garbage, run errands, bring in the mail....little things like that so she wouldn't have to try to walk around.
7. Mobility is another issue. My sister arranged a "bed" on a large sofa, with everything she needed w/I arm's reach to avoid standing and risking a fall.
8. Guests. They don't understand that chemo or rads can exhaust someone. My sister had to set limits otherwise she was just so exhausted she would sleep for hours after a visit.
9. Once the location is diagnosed, read up on that particular cancer and location as well as anticipated results and complications, and try to address the former ahead of time. Cancer can take surprising paths; one never really knows how the specific drugs will interact with a patient.
10. CURE magazine is one which we got free; it has excellent common sense articles, coping strategies, and even complex chemical analyses which I never read b/c they were well beyond my comprehension.
https://www.curetoday.com/
I hope this helps.
My uncle lives in a much larger community, so he will be staying there for treatment. We are in BC Canada and he is in Metro Vancouver. Luckily money is not an issue for him. If he needs to pay for rides for treatment, he can easily afford to. And being in Canada, insurance is not a question either.
I do not think my cousin has enough information to decide on what her plans will be. She has a job, many pets and chicken farm, so she cannot easily go to where he lives for an extended stay. Uncle does have a lovely woman in his life, who will be shouldering much of the hands on work, getting him to appointment etc.
His other brother and sister live 40 and 15 minutes away. But both have a spouse with serious health issues and with Covid they have to be very mindful of visiting.
My cousin loves hiking with her dogs. I will suggest that we walk our dogs together when she needs a break. Or either go camping or to the cottage. Her fellow has a camp on a local lake and I have a cottage on a nearby smaller island.
I will look into the resources you suggested.
Thank you very much.
So no questions. Just support. Just "I am so sorry. I am RIGHT here. I hear such good things about new treatments. I am in your corner. PLEASE let me know how I can help. I know you have tough decisions and lots to deal with; but I am right here for you, anytime." Just no questions. The answers will come.
Everyone's approach is unique. For me, I had to plan to whole death thing out. Then I could live. And woe to anyone who said "Don't even SAY that, you HAVE to be positive
We can meet people right where they are at that time during their struggle.
It’s a journey. It takes time to process situations.
My husband was just diagnosed with cancer. He is a private man and has only told our children and his work.
I have respected his privacy because I love my husband and will support him as he desires to be supported.
Yesterday I had lunch with two of my cousins. One is a colon cancer survivor. He also has had two heart attacks and surgeries.
My cousin’s doctor has advised him to retire which he did. Unfortunately, he must return to work because he lost his health insurance.
He had a high stress job, investment banking. He was working 80 hours a week with clients that invest millions.
For that much money, they own you! You must be available at all times for them.
Plus he has international investors and with the different time zones so he has to work at all hours of the day and night.
Life is stressful at times. Anyway, my cousin asked me if my husband was going to retire soon. I told him that he planned to continue working for awhile yet. His response was, “We he is in good health so it isn’t a problem for him.”
I was on the verge of crying but remained strong. I have respected my husband but I have no one other than this forum to talk with about my husband. It’s hard.
Thanks for listening. I hate cancer! I just want his treatments to be over and hear that he is okay. We are hopeful but I do get scared. Some days are very hard for me.
One of my cousins lives here, a woman who is one year younger than me. We see each other from time to time. The other, the man who has his own health issues lives out of state. They are more like brother and sister to me. Their parents died and my parents raised them.
It hurts me not having anyone to talk to. I cry sometimes feeling so alone in my support of my husband. What can I do? I don’t want to betray my husband’s desire for privacy.
Right now just "I am so sorry. I am RIGHT HERE if there is anything I can do. I know you will have lots of docs and things to figure out. But know I hear good things about treatments getting better every day. "
And please, none of this "be positive" stuff. I wanted to kill people who told me that. I wanted to scream "I have CANCER. So what else can happen to me if I have a negative day? Huh? Will I get ANOTHER cancer." Hee. It is a trip. Not an easy one. Mine was 34 years ago, and for the most part I have forgot how to be afraid.
Glad your cousin has you. Walk the dogs is ALWAYS A GOOD THING.
Sorry that your uncle received this sad news. Does he want chemotherapy? I like your suggestion about hospice.
Some won't apply depending on your uncle's choices, but others might.
Peace to you and your family.
Looking back now, perhaps it was prophetic, this fear of hers. One of her sisters died of it, one brother but that was after she lost a child. almost 50 years ago my 19 yr old brother died of cancer of the lining of the nerves. As children, we five siblings did not even have customary childhood diseases. We were all so healthy.
It was a huge shock when brother was diagnosed. Then another brother and a sister. Two brothers died...40 some odd years part. My sister survived. Four cousins In the same family died of breast cancer. Their mother (dads sister) did not have cancer nor the youngest of the five sisters. Then another cousin on my dads side had a brain tumor and lived about 20 months. No one has heart attacks. So, in my family I think of our “illness” as cancer. My mother was even diagnosed once, but when I got a second opinion from a leading cancer hospital, they disagreed. It was not cancer. She was in her late 80s at the time. Her mom was diagnosed in her 80s with breast cancer. She had her breast removed and no more problems.
Now, within the last 60 days, my husbands good friend has had a brain tumor and died and my nephew, late 30s has been diagnosed with late stage follicular non-Hodgkin's lymphoma. His body is full of tumors and his treatment is making him very ill.
So I think of myself as the sister, daughter, granddaughter, niece, aunt, cousin, friend of cancer victims/patients and have always suspected cancer was waiting for me. The one that hit the hardest was my 19 year old brother.
If I was given advice.. I don’t remember it. I do remember the folks who were there for me. Simply that. and I remember seeing him everywhere I looked and it being years before I could go a day without thinking of him or talking about him.
So my advice..Show up. You will know what to do when you make yourself available. You may be easier for her to simply be with than her son or others who might look to her for strength.
As always, it’s good to read “Being Mortal, Medicine and What Matters in the End” by Atul Gawande. It might help her should she have an opportunity to visit or speak to her dad or to better understand his decisions. A journal might help her also to get it all out. Tothill, You are a good cousin.
I wonder if any smoke inhalation from the forest fire could have worsened lung issues already in play? He is a true hero to have stopped the fire.
It's a dangerous profession already; it's so unfortunate (and perhaps inexcusable) that more safe methods can't be found to extinguish fires not responsive to water. But with the array of non-water responsive substances in use today, it's understandable that water can't extinguish some fires.
One has only to remember the number of first responders who developed cancer after the 911 attack.