Topic: Anyone else find themselves too paralyzed to reach out to someone Dxd with cancer?
AliG
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Member # 9734
posted
I always find myself completely paralyzed when faced with trying to call or write to someone diagnosed with any disease that I don't really understand.
It's really terrible because I find it REALLY hard not to do the SAME DARN THING that former friends and even family members have done to me.
I worry so much about saying the wrong thing or not knowing the right thing to say.
There is something I've learned from a Lymenet member here that I never really knew. It is often enough to just say "Hi, How's it going? Sorry your not feeling so good. Hope you feel better soon ."
That is often enough to let someone know you care. If they feel like talking they will, if not at least they know that people DO still care.
Having Lyme, I know it's terrible when you feel like people avoid you. They probably just "don't know what to say". I'm sure we've all been there at some time or another.
I'd like to thank Gary for allowing me to practice on him, since I have to call my uncle today who has decided to stop trying to treat his squamous cell carcinoma of the brain. I was thinking of starting out with "Hi, Quitter! Hope your death is pleasant". Any opinions on that or better ideas?
I couldn't be more anxious about making this call, but thanks to Gary, I realize that my uncle is still the same person & needs to hear from me. If I say something wrong or offensive, he can still tell me to pound salt.
Gary, my new-found pal, thanks for all your help and support. You're a great guy and really quite funny.
If anyone else would like to practice saying, "Hi, How's it going? Sorry your not feeling so good. Hope you feel better soon ." to a fellow Lymie with another disease to boot, I'm sure Gary would be thrilled to help you out too!
You just might find yourself getting some much needed laughs. We, the Lyme-infected, need to support each other because the outside world doesn't really understand. I'd imagine that falls true for the "cancer-afflicted" as well.
Now just imagine you're BOTH!!!! LET'S ALL GET SOME PRACTICE PEOPLE!!!! Everything gets easier with practice!
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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bettyg
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posted
I was thinking of starting out with "Hi, Quitter! Hope your death is pleasant". Any opinions on that or better ideas?
hi Ali,
glad Gary gave you some good advise; nice post about him as well!
my opinion; hi quitter is ok, but i would not say the 2nd line.
hi quitter, heard you've decided no more cancer treatments, and just wanted you to know that I support your decision so you have quality of life left to enjoy. When would you like to get together sometime? looking forward to visiting with you soon.
ali, i see 5 folks read this, and didn't know what to say so they scrolled on by. yes, it's an awkward subject.
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TerryK
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Ali, I'm sorry to hear about your Uncle. I know it is hard not to be angry with him for quitting.
I don't know his situation but perhaps he is depressed and this is why he has given up. Perhaps his doctors have told him that there is no hope. This happens all the time with cancer patients. I'm sure if he had a choice, he would rather live but maybe he is afraid that he will suffer horrible pain or be a burden on his family.
If it were me, I would try to find out more (as non-judgementally as possible) about why he is quitting and brainstorm to see if there is anything I can do to offer him some hope and change his mind. Maybe a medication for depression would be helpful? Perhaps a support group? Maybe stories of people who were told there was no hope but didn't give up and they beat their cancer.
When my dad wanted to give up after his leg was amputated I found a local support group of amputees and asked if someone could visit him in the hospital. The man who visited with my dad was a golfer who still golfed. My dad was inspired. I also did other things that seemed to help.
If I know someone that I love is in a life and death situation, I do my best to give them unconditional love and let them know that no matter what they do or don't do, I'll love them with all my heart anyway.
I would offer him whatever you can to help him fight but if in the end he decides to give up, let him know how much you love him and how much you will miss him.
In the end, you do not want to have regrets about things that you should have said or done but didn't.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I don't think "quitting" chemo or radiation is always such a bad thing. Many people get well doing natural treatments.....or their quality of life is improved so they can "enjoy" the last days, weeks, or months or their lives.
That said, you can always call someone and say, "I just called to say I love you. Is there anything I can do for you? I'd be happy to come over and watch some TV with you, if you'd like."
or...."Are you able to come to my house for dinner?? It won't be anything fancy, but it would give us some time to enjoy each other."
Still chicken??? Send a card or personal note!
Good job, Ali!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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AliG
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Member # 9734
posted
Thanks guys,
Betty, I was just kidding about saying that to my uncle. He does have that kind of sense of humor, but I still wouldn't say it.
I love my uncle dearly, unfortunately he is in Indiana and I'm here. My DD starts school week after next and my DH is basically helpless. My grandmother starts radiation on Tuesday and my Dad is also quite ill and relies on me heavily.
My uncle is stopping Tx because it doesn't seem to be working and is very expensive. He is already in tremendous debt and doesn't want to leave his wife in more of a mess than they're in already.
With the type of cancer he has, there is a 6% chance of surviving 5 years. His pain is horrific, from what I understand. They have already made plans for hospice care, which will run until a year after his demise because My aunt will likely need help dealing with what she is about to go through.
Yes, it is devistating but I do understand his decision and it would be very selfish of me to try to talk him into continuing this battle. He has faith in God and seems to be more at peace with his passage than the rest of us.
One thing that makes me wonder is that he was very concerned about my mother getting out to get him some lottery tickets. I'm wondering if he would continue treatment if he won or if he would just like to make sure my aunt is taken care of. No way to know.
Enough about me! There was actually an ulterior motive for this post. I was hoping to get a little more support for Gary and offer encouragement to those who may be feeling shy or awkward.
Gary IS NOT quitting and he IS going to beat this! I think he's in a heck of a spot and could use a little more friendly reading material.
I do thank you guys for being so supportive about my situation with my uncle.
You are truly the greatest friends I've ever had.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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ArtistDi
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I am not on here much, but this thread caught my eye. As someone who has lost a good many of her family to this disease, as well as her dad, I may have some advice. My best friend also was dxed with breast cancer and lost her breast, now on oral chemo for five years.
When my dad was dxed with pancreatic/liver cancer, I promised that I would be there, be supportive of his decisions. When he told me he couldn't do it (chemo) anymore, I said it was O.K., and I would make sure he was comfortable. He asked that I would be his "mouth piece" when he couldn't speak for himself. I am an only child, and I did make the decision to take him off life support when there was no more hope and he was in a coma.
As for my best friend, who wouldn't/couldn't talk about the cancer--I sent her books, food, flowers, letters. She knew I was there.
That is the lesson in this, as cancer is a terrible, terrible disease, and even the best generals can't always win the war. That is when compassion is needed to accept what the person decides. I have watched countless members of my extended family die of cancer, and I know how it ravages.
You just are "there" for the person, honoring whatever needs that person has.
Artist
Posts: 1572 | From Hatfield, MA, USA | Registered: Mar 2002
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TerryK
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Thanks for explaining Ali. My heart goes out to you and your family. I know what it's like when so many in your family are ill and depending on you to be there AND you are sick yourself. It's really tough. Hang in there.
Nice of you to garner support for Gary. I've read some of the banter in past posts about Gary's situation. I'll try to get over there more often.
Artist - thanks for sharing your story. Touching and well put.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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quote:Originally posted by tracybillings: My cousin, the best one, is dying of liver cancer. I can't go see her. I'll start to cry. My cousins already think I'm a serious jerk for Not (Lyme) going to any of the family occasions.
Wouldn't you rather cry with her than AT her funeral?? There's nothing wrong with crying.
Go see her and cry all you want.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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AliG
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Member # 9734
posted
Yes, Thank you artist and thank you too, Terry
TuTu, I do agree with you.
I just got off the phone with my uncle. I mostly listened, choking back my tears, because of course I don't want to add to his burden.
I don't want to make him worry about me or how I'll deal with him leaving. His peace of mind is more important to me.
I do also think that crying is a normal human reaction and it's OK that he may have heard some sniffles in my silence here & there when it was hard for me to speak. Sometimes for someone to know that they are worthy of your tears is helpful to them too.
It seemed very important to him to let me know that he has accepted what is going to happen and actually looking forward to being at peace. I think his biggest concern is for the people he leaves behind that will miss him. (He did actually say something to that effect )
He had been told that he'll have 4-6 months. If he does the chemo & radiation, he'll have 4-6 months.
Likely what will happen is they may get rid of it in his brain but then it will go after his kidneys or liver or colon or who knows where else.
He figures, since he has medication to help control the pain, he's OK to let this take it's course and make the best of the time he has left. Why spend his remaining time chasing it around?
He knows he'll be going to be with God, in spirit and all that will be left here will be a pile of flesh and bones. He's looking forward to again seeing those he's known here on earth who have already passed.
He doesn't want any of us running out there for the funeral. I told him that if we went out for the funeral, we would be going to comfort my aunt. That is what the funeral is really for.
He says that my Aunt has her family there as it's much closer for them and they & the hospice will help her through it.
I talked to my mother and we both feel that he has a lot of nerve to try to dictate that decision. My Aunt is a very sensitive person and she loves him dearly. This will not be easy for her AT ALL. I think she needs to know that WE ARE her family too and will be there if she needs us.
The more I think about that, the more it bugs me. He's a pretty bright guy (member of Mensa, actually classified genius), perhaps he thinks he's looking out for her with reverse psychology.
Or maybe he just realizes how close to impossible it would be for us to actually be able to pull it off and doesn't want us hating ourselves if we can't get there.
Who knows?
I am glad I called and said "Hi Uncle, How ya doin?". I really think he needed it.
Thanks again for all your support & thanks Terry for helping reach out to Gary. He really is a nice guy.
Ali
PS- I'm sorry I turned this thread into a "General Support" item, I was trying not to do that.
Thanks again, though. You guys really are great!
Now Tracy, GO CRY ON YOUR COUSIN!!!! She's going to think you won't make time for her and might see that cake as you way of easing a guilty conscience.
She will never know how you are really feeling right now, unless you face her on the phone or in person.
You're thinking your crying will upset her? IMO-your absence from her remaining life will upset her more.
I think we Lymies have a tendancy to procrastinate over things like this and avoid the possibility of emotional pain. You will have MORE emotional pain, likely for the rest of your life if you don't face this before it's too late.
BTW, Did I mention? I'm so sorry about your cousin and I'm really very sorry your in the situation you're in. I know it's really awful.
You deal with it however you need to, sweetie.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
***Sometimes for someone to know that they are worthy of your tears is helpful to them too.***
ABSOLUTELY!!
***Or maybe he just realizes how close to impossible it would be for us to actually be able to pull it off and doesn't want us hating ourselves if we can't get there.***
I THINK YOU GOT IT! But if you can get to the funeral....do it!
I'm so glad you called him!! Reminds me. I have two living aunts and one uncle....need to make a few calls myself!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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AliG
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posted
TuTu-
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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hshbmom
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Member # 9478
posted
Timely post Ali.
My good friend is being treated for brain & lung cancer right now. She can't keep anything down & gets dehydrated. Her pain is out of control.
Today is the 3rd hospitalization in one week. I hope they keep her until they get these symptoms under control.
She has 2 teenage children & her grandchild; her husband has to keep working to keep insurance and food on the table. The kids don't grasp the seriousness of their situation. I don't know what to say to them.
I watched people when we were out and around our friends & aquaintances...most just completely avoided her...not even making eye contact. It was heartbreaking.
She really appreciated the ones who talked to her...some just grabbed her & hugged her & it meant a lot to her. She doesn't feel very pretty or lovable right now.
She's in a sad situation all around...she really needs an adult with her, but no one is available. They need to open their mouths and ask for help.
I recommended bringing in hospice yesterday. That was a difficult suggestion, but her family is wearing themselves out trying to take care of her, but it's not enough.
I have several major things going on right now or I'd be over there. I go almost every day or two for a little bit. Her situation is overwhelming...I can't imagine being in it 24/7.
You don't have to say anything...just be there. We laugh at many little things. The other day she unknowingly sat on her useless arm & I told her now I know she's not a princess. She had a good laugh too.
Consider the needs of the patient's family too. You can take them a meal, clean the toilet, take out the trash, do some laundry, change their sheets, run to the grocery store, run an errand for them, or babysit for them.
Maybe you're good at organizing medical bills and insurance claims...whatever it is, every little act of service will be appreciated.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Age and experience is a great teacher. That's how I learned all this "good" stuff!
I learned a lot with the passing of my parents. When my mother died Dec. '05, I forced myself to sing Christmas hymns to her as she lay dying. It's a comforting memory now.
editing to explain the "forced" above:
I wanted to sing to her, but had to work HARD at singing without crying. The two don't mix well! So I had to "force" myself to concentrate on the song, not my grief. It was one of the hardest things I've ever done.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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AliG
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Member # 9734
posted
Thanks for sharing that, hshbmom.
I'm sorry about what your friend and her family are going through and I can appreciate how hard it must be for you too.
Your friend is very lucky to have a friend like you. It really pains me to know that other people treat your friend like that. It's almost like they think they'll catch it or something.
Good for you that you manage to remain supportive. That can be so hard to do, especially when it seems like even the little things can be so hard to do in your own life.
TuTu-
I'm sorry you had to lose your parents. I guess we all have to have that experience at some point in our lives. Thanks for giving me the benefit of yours.
I have the memory of visiting with my grandmother before she died. I was combing her hair for her because she asked me to. She said to me, "Not one of my daughters will come do this for me" and started crying. (She had 5) My dad had been staying there, taking care of her when she became unable to care for herself and I think it broke both of their hearts that his sisters couldn't make any time for her.
All the way up until she could absolutely not get up and walk around unaided, she would get up early Sunday morning and make a big Sunday dinner for all of her children and their children as well. It really was a terrible thing to witness from the perspective of a teenager. It was like they discarded her because she couldn't do anything for them anymore.
Maybe they couldn't handle seeing their mother suffer but to her, it didn't appear that way. She really needed them and they were not there.
I am grateful for having made that long trek out to spend time with her, as difficult as it was to face, I know it made her happy that I was there.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
***I am grateful for having made that long trek out to spend time with her, as difficult as it was to face, I know it made her happy that I was there.***
You did a GREAT job! People are just so hard to figure out when it comes to death. I guess it's a confusing thing for most.
Hshbmom....You're a great friend. I'm so glad you can be there for her, even if just a bit. She appreciates every minute, I'm sure.
My dear sister-in-law's sister, Karen, is dying of Hep C. Karen just lost her husband to Hep C and cancer 3 weeks ago. Now SHE is dying. They give her 3 months. Tragedies of life know no end.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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AliG
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posted
That somehow seems romantic. At least they'll be together soon. I hope they were truly in wonderfully happy love with each other because that would be a comforting thought for her.
[ 27. August 2007, 07:54 PM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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breathwork
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Member # 567
posted
My husband has esophageal adenocarcinoma. He was diagnosed in August of 05..most people die within six months of diagnosis. He has survived thus far. It has been hell beyond my ability to conceive of it sometimes.
The greatest pain of all is the loss of friends and family who are too afraid to stay in contact or drop off a casserole...
I know you are afraid. The person with cancer has you beat hands down. They are the one suffering physically, emotionally, financially, spiritually..Reprioritize and send out your love even if only in a note.
The loss of people in our lives has been absolutely cruel and I doubt that they have a clue. It makes the losses of lyme seem like a much lower level class.
So get off your duffs and suck up the fear, blow it out, get some counselling, pray to your God, do whatever it takes, and reach out. Your not reaching out is hurting others.....If we knowingly were hurting others in other situations, most of us would do what it takes to remedy that situation....This one is the time to grow some character...You know how much it hurts to loose people from lyme....Don't do it when cancer is involved. It's just abnormal cells. the treatments suck, and the fears of the patient and the immediate family far outstretch yours....
Send a note, pick up a phone, cry...it is sad, it is scarey...work through it.....participate in the lives of those you love...they certianly need it and deserve it.
Carol Ann
Posts: 1062 | From CA USA | Registered: Jan 2001
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bettyg
Unregistered
posted
carol ann, thx for sharing your husband's esophagus cancer story. that's what OUR lyme friend, gary, has. please look for post about him and go post on his visitor page telling him about your husband making it 2 years. THAT'S A GOAL FOR GARY!!
i'm so sorry for everything everyone has been through.
nancy, that's really wonderful especially since your entire family of 6 kids with lyme and parents!
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posted
Breathwork, I'm so sorry to learn that your husband is so ill. I pray that more people will open themselves to your needs.
I wanted to come back to this today and let you guys know that "Karen" died Friday. I didn't know this until today when my sister-in-law emailed me to let me know.
She and her husband left two sons behind. One is 19 and the other is 22. That is so terrible!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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breathwork
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OH Tutu...I'm so sorry... For her sons and for you..a good friend... Fondly, Carol Ann
Posts: 1062 | From CA USA | Registered: Jan 2001
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posted
Long-used drug shows new promise for cancer Therapy prescribed for metabolic disorder now found to shrink tumours in lab rats The Globe And Mail Wednesday, January 17, 2007 Page: A17 Section: Health Byline: Andre Picard Source: ANDRE PICARD PUBLIC HEALTH REPORTER With reports from Avis Favaro and Elizabeth St. Philip, CTV News Imagine, if you will, a drug that shrinks cancer cells and can even make tumours disappear. A couple of spoonfuls a day of powder in a glass of water is all you need. There are no nasty side effects like nausea and hair loss, and no damage to internal organs such as with traditional chemotherapy. And it costs only about $2 a dose. Too good to be true? Not according to a Canadian researcher who stumbled upon the potentially new anti-cancer agent called dichloroacetate, or DCA, a drug long used to treat rare metabolic disorders. "This is one of the most exciting results I've ever had," said Evangelos Michelakis, an associate professor of medicine at the University of Alberta in Edmonton. "But I can't be overenthusiastic until it works in a human being." In a paper published in today's edition of the medical journal Cancer Cell, Dr. Michelakis and a group of researchers from the U of A and the University of Ottawa, report on how they were able to use DCA to shrink human lung-, breast- and brain- cancer tumours in both lab rats and in a test tube. While this type of research in laboratory animals does not generally generate a lot of enthusiasm, in this case the findings are creating a stir because DCA has actually been used safely in humans for decades -- in treating rare inherited metabolic disorders such as lactic acidosis, not cancer. "One of the big concerns about drugs is that they can harm people but we already know this drug is safe. It doesn't even affect normal cells," Dr. Michelakis said. The research challenges one of the fundamental premises of cancer biology, that mitochondria (the energy producing units of cells) are permanently damaged by cancer. What Dr. Michelakis and his team found is that while mitochondrial function is suppressed, it can be revived with DCA, which makes the cancer cells susceptible to dying. (Most cancers become resistant to standard chemotherapy by suppressing mitochondrial function.) In other words, the drug works by revving up the engines of normal cells, allowing them to work normally and driving cancer cells to commit suicide. "This is the holy grail of cancer therapeutics -- how to kill the cancer cells and spare normal cells," Dr. Michelakis said. Dario Altieri, a professor in the department of cancer biology at the University of Massachusetts Medical School in Worcester, Mass., said the research is "exciting" and that DCA has a lot of potential. Dr. Altieri said DCA needs to move quickly from the lab into human testing. But he cautioned that there is a real possibility that will not happen, largely for economic reasons. There is no longer a patent on DCA, meaning it is not owned by any one company. As a result, there is little chance of making a large profit, even if the drug works remarkably well, and hence no incentive for pharmaceutical companies to invest in research. Dr. Michelakis acknowledged this is a real practical problem, but he expressed hope that public funding bodies like the Canadian Institutes for Health Research (which funded the lab study) will step in. "Nobody is going to make a billion dollars from this drug," Dr. Michelakis said. "But maybe it will help a lot of people with cancer." � 2007 CTVglobemedia Publishing Inc. All Rights Reserved. Idnumber: 200701170159 Edition: Metro Length: 563 words Keywords: MEDICAL RESEARCH; DRUGS; CANCER Previous | New Search | Search Results
Posts: 789 | From CT, | Registered: Jun 2006
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posted
**** As a result, there is little chance of making a large profit, even if the drug works remarkably well, and hence no incentive for pharmaceutical companies to invest in research.****
And thus ends the world's chance at a cure! Let's hope this will not drift into oblivion.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
tutu, my sympathies to you on the double loss in your family. at least her pain ended.
at least her kids were out of school which is a blessing.
my brother/sister's kids were: 11 and 14 when my sis died; sis-in-law ... kids were 13 and 16.
don't have time to look for my sympathy poem link, will try during daylight hours. getting ready
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breathwork
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Member # 567
posted
Well, the research funding may not happen, but the drug can be obtained for the metabolic disorder, yes?
I'll bet that I could find a doc willing to prescribe it if I work at it hard enough....
Aren't our mitochondria damaged or slowed as well? I'm fuzzy on this area....
I need to do some research and see what I can see...
Thank you for the article!
Carol Ann
Posts: 1062 | From CA USA | Registered: Jan 2001
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AliG
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Carol Ann,
How awful for you & your husband. I can only imagine how difficult it must be to watch your husband suffer both physically AND emotionally. As if the disease were not bad enough!
People really have NO clue. I think maybe since cancer seems so prevalent these days, people are afraid to face their own fears by facing those who's lives it destroys. Maybe they think if they don't look, maybe it will just go away.
I really hope some of the people who have been neglecting both you and hubby, in your time of great emotional need, will muster the strength & courage to give you some much needed support.
TuTu,
I am sooooo sorry to hear your news. How terrible for those kids to lose BOTH parents in such a short time, when they are just coming into their own. It's so very sad.
Al-
I don't know what to say except, GOD BLESS YOU!!!! I am forwarding this to my uncle in the hope that he can get someone to prescribe it. Thank you, Thank you, Thank you!
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
***I am sooooo sorry to hear your news. How terrible for those kids to lose BOTH parents in such a short time, when they are just coming into their own. It's so very sad.***
It's also tough because their parents have been very ill for many years....I think about 10 yrs. Their parents were in their forties.
Thanks, betty! I'd like to send the poems to my sister-in-law.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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