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Off topic news about my mother's recent cancer diagnosis

Rewriter's picture
Rewriter
Posts: 497
Joined: Dec 2009

I am not sure that this is an appropriate place to post this message, but I have come to love the women on this board and to respect their opinions about cancer diagnoses and treatment more than those of anyone else.

The background of my current concern is as follows: I was adopted a few days after my birth. About a decade or so ago, I started a search for my birth mother; and through a very skilled searcher, I found her within a matter of days. Initially, although I was the one who searched, I was very angry and wanted little to do with her. When I was diagnosed with cancer three years ago, a good friend called my birth mother, who called me when I was having a particularly rough day. I so badly needed a "mommy" then that I opened my heart to Eve. For these three years, we have had a very warm and loving relationship.

Yesterday, I found out that Eve has been diagnosed with Stage IV lung cancer and given only four months to live (yes, I know that no one is a statistic; but she has multiple other health issues). Today, she is getting a port and is planning to start chemo later this week. She is devastated, as I am.

My question to all of you is whether I should suggest to Eve that she forego chemo in favor of a better quality of life at the end. She is being given only four months. Will chemo likely do more harm for her now than good, causing her to possibly be too fatigued to do many of the things she enjoys? She is a very social person, still writing columns for the local newspaper and thriving on socializing with friends.

Any thoughts? Thanking all of you in advance.

Jill

ediegram
Posts: 27
Joined: May 2011

Wow, this is really a tough one. I think the chemo treatment on whether to forego or not would be best as a personal decision. It's okay to suggest what options are out there, but ultimately she will be the one to make that decision. After my Mom was diagnosed just recently, another fried of mine was diagnosed with Stage 3 cervical cancer. She was given 30-40% at best with treatment. She is not doing the treatment. She has a tumor that has been growing in her uterus for the past ten years. She has decided to looking into holistic healing and lots and lots of prayer.

On another note, I had a friend that was diagnosed with stage IV lung cancer. She just barely made it under the 5 years when it came back and spread into her pancreas. At the time of her diagnoses, she was given 6 months to live, but lived close to 5. Has she asked for a 2nd opinion?

Thoughts and prayers with you and Eve.

Edie

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

This is a subject close to my heart as I am pretty sure I am also a short-timer if this radioembolism doesn't work out for me. But it's not always a black and white decision. If your mother had symptoms, chemo or other treatments might actually make her last months more tolerable. We think of chemo as causing us so many distressing side affects, but late stage cancer can be painful and left untreated can cause a lot of really disturbing unacceptable symptoms. By shrinking large tumors, chemo or radiation can take the pressure off nerves or re-open blood flow from a compressed vein, etc. Psychologically it may be healthier for her to mount a battle, even if it is a losing battle, if it can buy her additional time. I am glad that I have a trusted oncology team that I've worked with for years so that they can lay out various likely scenarios for me and I can factor their advice into my decsion when the time comes. The last 5 chemo drugs I tried did not work at stopping disease progression, so I've pretty much decided that I won't try any others that make me feel sick or negatively affect my quality of life. But I am taking tamoxifen/megace currently and working to get insurance approval on radioembolism. So in my own way, I am fighting on, but returning to chemo is unlikely for me, as I am enjoying a beautiful spring and anticipate a happy summer. Then if I'm still alive in the fall, I'll re-evaluate. But this is a VERY personal decision. I don't know if you should be the one to open that topic of conversation; I'd wait to be asked my opinion before I volunteered it. & even then, I'd be very tentative and listen more than talk. (((hugs)))

Rewriter's picture
Rewriter
Posts: 497
Joined: Dec 2009

I very much appreciate your responses. So far, I have only listened to Eve. I do get the impression, though, that she is committed to doing whatever the oncologists say she should do--she is 84, born during a time when doctors were gods. I've spoken once to my half sister and did share my concern with her about the pros and cons of chemo at this point. This was my first contact with this woman, though, since the family has not been open to dealing with me; and she might disregard anything I have to say.

Eve found out that she has lung cancer because she was not responding to treatment for double pneumonia. She and her doctors attributed her terrible shoulder pain to the associated coughing, but now they know it is cancer pain. I had not considered that chemo might help with that pain and might shrink the tumors enough so that she can breathe more easily.

Also, Eve is a fighter and might benefit psychologically from an all-out war on this disease.

I'm feeling scared and helpless, and I guess I have a tendency to want to control situations when I feel this way. It's a good thing that I have not interfered with Eve, though, and I will refrain from doing anything other than loving her and supporting whatever she decides to do.

Linda, I wish you speedy approval for the radioembolism and a complete response to it. I also wish you a beautiful and happy spring and summer.

Again, thanks to both of you for taking the time to respond.

Warmly,

Jill

sleem
Posts: 92
Joined: Feb 2010

Linda, you have helped me for what might be my future sometime...who knows when, if or maybe... I feel if this does approachs me. I will need to think what is best for me & what I feel like during that time. I am glad that you found each other and are there together for each other. Linda, I hope you find out soon about the insurance.

You both helped me. Thanks

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I agree that whether to take chemo or not is a very personal decision. We can only be there to support the person whatever their decision is. Sometimes we don't like the decision others make, but we have to support their decision. Once a decision is made, you can't second guess what if.

I am glad you got to know your birth mother and know her strengths. Glad you can love her and be a support for her. In peace and caring.

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Dear Jill:

I am glad that you were able to reconnect with your mother. However, I am sorry that she has now been diagnosed with lung cancer.

As Edi and Linda have said, it is your mom's choice and it really has to do with how she is feeling and what other symptoms she is having. But, I would probably feel like you, and forego the chemo and give her pain medication for pain. Although sometimes just taking the pain medication will put you out and non functioning and if that is the case then why not try it with chemo in the chance that it could shrink any tumors which may help relieve the pain.

My dear mother-in-law, 73 years old, was having back pain and was being really stubborn so her sons finally got her to the hospital. She was diagnosed with lung cancer that met to the spine. She did not get chemo only pain medication. She was hospitalized for three weeks. She was on pain medication and was very mean to my husband (which was not her at all). The fourth week she went to a hospice home where she believed she was on a cruise ship. We lost her during the fifth week.

I only brought this up to maybe help you with your decision. I think you and your mom should sit down together and you tell her how you feel. Let her talk and then go with her decision. Your mom must have made a lot of hard decisions in her life, but I think she would appreciate a nice sit down discussion with you.

It must be so hard for you and I feel bad that you are feeling scared and helpless and wish I could be there to comfort you in some way. So I am sending you some cyber {{hugs}}.

My best to you,

Kathy

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Jill,

What a difficult situation for you. I echo the comments so many others already made. I do think it is good to let your Mother know your feelings, but also let her know that the choice is hers and you are supportive of her decision.

And I don't think this is an "off topic news"...We are all here for each other to support them through whatever comes down the pike. We come to trust each other and that makes for a source of wonderful info and guidance when any of us are in a difficult situation. So, know we are here for you.

Jill, I am happy that you had the opportunity to meet your Mother...I think that is a blessing.

Big hugs coming your way. Please keep us posted on how things are going with your Mother.

Karen

Northwoodsgirl
Posts: 572
Joined: Oct 2009

Jill, my Mom had uterine cancer 7 years ago and chose not to IV chemo but did take oral megace. She was 72 yrs. young and died within 6 months after her hysterectomy. Her surgical incision opened up totally the first day out of the hospital. Prior to her hysterectomy for uterine cancer stage 2B we talked about to chemo or not. She ended up having palliative radiation due to mets to her adrenal glands and also to her bones. (Then 4 yrs later I was diagnosed with the exact same grade and stage of uterine cancer.)
So in about 4 months time my beloved Mom's cancer advanced to a terminal state. Maybe a palliative care physician or nurse could help you with how to have a conversation with your birth Mom to hear about her wishes and fears. You also may find some comfort and benefit from expressing your own feelings and experiences with the palliative care clinician. They can help you frame up the difficult but heartfelt conversation with your birth Mom. Spiritual or religious beliefs are so important to those of us with beliefs as we decide as individuals and families what is best for each of us. I am happy for you that you found your birth Mom and that she was there for you when you needed her and now you are there for her during this most difficult and trying time. Blessings and peace...Lori

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Sending thoughts and prayers out to Eve....

May her time be as painfree as possible...

Laurie

Rewriter's picture
Rewriter
Posts: 497
Joined: Dec 2009

for offering your related experiences, excellent advice, and comfort. Eve will begin chemo on Friday in Las Vegas and then will move with her daughter to Phoenix, where she will continue the protocol. This may not be the decision I would have made, but I told Eve that I will support and love her every step of the way.

I wish I could respond to each of you individually. I'm so sorry for those of you who have lost loved ones due to similar circumstances (and dissimilar circumstances) but have been helped immensely by your stories.

Through this situation, I have had contact with two of my half sisters, who previously were not open to speaking with me. The jury is out on whether or not this contact was a positive experience for anyone involved.

Thank all of YOU for being the BEST kinds of sisters.

Love and big hugs,

Jill

Double Whammy's picture
Double Whammy
Posts: 2834
Joined: Jun 2010

like this are difficult to make for anyone, even medical professionals. I think that's why they offer us choices. Jill, I hope your mom tolerates the treatments well and they make her illness and remaining life more comfortable. Sending positive thoughs and prayers your way.

Also want to say that I'm pleased that your reunion with your mother has turned out to be positive for both of you. It must give her comfort to know you.

Suzanne

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Life never ceases to offer us challenges. And most we could not fathom to have prepared for. (Dangling preposition be damned) The only bright spot is that at least you were able to make contact with your birth mother before it was too late. She is no longer an unknown, nor your half-sisters, however the future with them pans out. Hopefully her treatments will ease her symptoms and make her remaining time better. However, for her, just to be doing something may make her feel more in control than just letting the disease run its course - no matter the effects of the treatments. And that choice is a decision that only the individual can make until such time as an Advance Directive must be invoked. And even then, one's hope is that one's personal desires continue to be followed. I had to make the decision to turn off life-support for my first husband -- and it was indeed a very traumatic experience. Our two children were high school and college age at the time. There is no easy path to follow.
My thoughts and prayers are with you.
Annie

Rewriter's picture
Rewriter
Posts: 497
Joined: Dec 2009

to all of you, particularly given the challenges that many of you are currently facing. There is such an outpouring of compassion and support on these boards that I often turn to all of you before I share anything with family and friends.

The goal with regard to Eve, my birth mother, has changed. Now, we are trying to just keep her comfortable and pain free. She is 84, has multiple serious health issues, and chooses to make the transition out of this life. My struggle is to accept this, something that is so much more difficult than accepting her choice to go through chemo.

I have become somewhat more spiritual over the years, and I believe that Eve will continue to be with me.

My hope is that sharing this news is not going to depress anyone. Eve's circumstances are very different than those of the women here.

Again, many thanks

Jill

sleem
Posts: 92
Joined: Feb 2010

Jill,
Thank you for your words and sharing with us. We all have lives that are different and now we have this common thread between us either as loved one sharing their experience or the person who has cancer. My loved ones must stand by my side, but thank goodness, they are not inside me sharing the disease. Helpless both we are to tell my body not to have a disease that did invade it. A disease that continues to act on its own even with human intervention which tries to keep it away or under control.

I suppose it is like telling some who has never experienced snow or rain how it actually feels when they haven't experienced snow or rain. It is hard for the care giver to understand what it feels like before and after the cancer. That shield of safety has eroded that keeps all of us humans feeling as the world be available to us forever.

Some lifetimes are lived in seconds and others for decades. Yet, the time spent in either can be worthy of a lifetime of knowing that you had those moments to share and remember.
It is hard to come to an understanding that I might leave the people I love behind when I so much wish to be here. Yet, if my body fails, the train I'm on has that one way ticket for me and I rejoice knowing that my children are not on that train with me. That they are safe for now. Your Mom and you have connected, that is a big accomplishment. You both have that memory. It is for all the days of your life to have this time together. She is fortunate you have entered her life again. BLESS you and keep you.

I don't know if any of these thoughts help you. I hope some part of it does.

Rewriter's picture
Rewriter
Posts: 497
Joined: Dec 2009

Thank you, sleem, for your words. I will cherish the time that Eve and I have had together and hold on to the memories. She lives within me; I am her child.

Although I did not have the stage/grade nor the type of cancer that Eve has, I am the only one of her children to understand at least a little bit of her cancer experience. I was diagnosed with Stage 1a UPSC almost three years ago. My hope was to be able to support Eve through her chemo treatments, as she would have been receiving the same chemo drugs that I--and most of us here--have had.

I am glad that my other loved ones were not inside of me while I had the disease. Now that I am nearly three years NED, though, I am trying to believe that the world will be available to me for a long, long time. I think that is the trick: as long as we are not in pain, to try valiantly to regain the joy of being alive, whether it is for a year or for many years.

I hug and kiss Eve every day, in my heart; and I will continue to do so every day of my life.

Jill

Rewriter's picture
Rewriter
Posts: 497
Joined: Dec 2009

Eve died on Wednesday. After deciding not to go through chemo for Stage IV lung cancer, she started living her life with renewed passion. She shared on her Facebook page (yes, she was a cool 84-year-old) that she had never been happier. She and I talked every day, laughed a lot, shared stories, and loved each other.

On Monday of this week, Eve started having pain and was transferred to hospice. She died peacefully in her sleep. I was not with her, but I bet she had a smile on her face.

My mother was beautiful inside and out. May she rest in peace.

Love,

Jill

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

I'm so sorry to hear Eve is gone. It was a very short journey she took down this path but she sounds like someone who lived large right to the very end. It is wonderful you connected and were able to to maintain the close contact to the end. You had time to create many memories that will fill the hole in your life that her passing made.

That concept of suddenly having 'a hole in my life' was the only way I could describe the emptiness i felt when my first husband died. Although we had separated we stayed in regular contact and shared events together and all our children's activities. It was my first significant loss, but 12 years later I find that just regularly sharing memories, stories, etc. allows him to still be part of mine and my children's lives. Although you only shared the last few years with Eve, she became a very significant part of your life, and the memories you created will keep her in your life forever.

I'm glad she is at peace now.
Sending a big cyberhug to you.
Annie

Rewriter's picture
Rewriter
Posts: 497
Joined: Dec 2009

particularly for sharing how you keep your first husband's memory alive. I am sorry for the difficult time you must have had when he died but glad to know that through your efforts, he is still part of your and your children's lives.

I may not have been raised by Eve, but I felt closer to her than I did to my adoptive mother. We made so many memories together, and I can still hear her calling me her sweet baby girl. I loved hearing that, and she loved saying it, probably because she never got the chance to call me that when I actually WAS a baby girl.

Yes, Eve's passing was unbelievably quick--just a few weeks after diagnosis. I'm glad that she did not have too much time to think about what was happening and that she was able to carry on almost as if she was going to live forever. Wow; what an inspiration she was for me.

I'm still writing notes on her Facebook page; they are oddly comforting. Who knows? Maybe they are comforting to Eve, too, wherever she is.

I went off my anti-cancer diet tonight and had chicken tamales with mole sauce. They were delicious; but I need to get back to my plant-based, mostly alkaline meals.

Thank you for the cyberhug. I needed that.

Jill

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I know that this is painful for you; and you have my most sincere sympathy. It does sound like your birth mother made the right decision and made the most of the time she had left and that any suffering was fast and minimal. I would be pleased to end my journey under those circumstances, running my own show. I realize it probably doesn't make your loss any easier, but there's a lot to be said for living well and dying well. Sounds like she did both. ((((Jill)))

Rewriter's picture
Rewriter
Posts: 497
Joined: Dec 2009

First, thank you Linda for your very sweet message to me. My loss is made a LOT easier knowing that Eve lived well and died well. I'm laughing at how she managed to run her show right to the end. She was so much like that when she was alive: stubborn, quick to resist anyone's attempts to control her, able to find a way to live according to her own terms even when she was bedridden.

I do not want anyone here to see herself in Eve's situation. Unlike the women on this board, she had multiple other health issues that combined with an extremely poor diet (fast food and microwaveable meals)and inferior health care. Also, despite having quit 32 years ago, she was a heavy smoker for more than 30 years; and her lungs likely never recovered. Add to that the fact that she was 84 and so badly wanted to join her husband, who predeceased her by a month.

Thank you for your condolences. Her loved ones will all be sad, but for me the sadness is tempered by happiness that she was never out of control. Also, if there is a way for Eve to visit me--even in my dreams--she will find it. May this be so for all of us.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I extend my deepest sympathy. I am so glad you got to find Eve when you did and make some very pleasant memories for both of you. I am sure you were quite a comfort that her "sweet baby girl" found her. I hope her other children will accept you, too.

It is comforting to hear she lived well until the end. I think that is what we all want. Take care and remember those good memories. In peace and caring.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Dearest Jill,

I am so sorry to hear about your loss but I know you have some wonderful memories of your dear birth Mother. She was obviously a very strong and independent individual, calling the shots until the end. She made the most of those last few weeks “living well and dying well.”

I am so thankful that you had the opportunity to get to know her and even more importantly that she got to know what a very special daughter you are!

I am thinking she is enjoying reading your facebook posts and is smiling from ear to ear!

Wrapping you in a big hug!!

Love, Karen

Rewriter's picture
Rewriter
Posts: 497
Joined: Dec 2009

Thank you for your very kind words. I do have some wonderful memories of Eve, and I am comforted knowing that I DID find her when I could easily have missed the chance to know the woman who gave birth to me. Gosh, I hope that she and I are enough alike so that I can handle challenges with the same strength and independence that she always exhibited.

Yes, Eve is smiling from ear to ear as she reads my Facebook posts. She promised to visit me as soon as she could; and although I am not particularly religious or spiritual, I feel her here beside me.

Hugs to you, too. I hope that you are having a wonderful, nurturing weekend. It's time for me to get out into the sunshine; my dog has been waiting patiently for hours.

What would I do without the women here? I cherish you all.

Jill

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Dear Jill:

I haven't been on for a couple of days and just logged on. I am so sorry for your loss. It was nice that you and Eve were able to share stories and laugh and the fact that you both had something in common that has touched your lives.

What a cool 84 year old woman to be on facebook! Eve is definitely smiling upon you!

May you find comfort in all of the shared stories you two had together. Sending you comforting hugs.

Kathy

Rewriter's picture
Rewriter
Posts: 497
Joined: Dec 2009

for your condolences.

What's going on with you? Do you have special plans for the weekend?

Jill

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Hello Jill:

Thanks for asking, but sorry I didn't get back to you sooner. I really had a very busy weekend. On Friday we attended a band banquet for two of my sons. My second son is graduating from high school and we threw a party for him on Sunday. It was nice seeing all of the relatives. And we have been trying to move into our new home (which is where the party was). and also trying to move the office. So now I will have two boys in college and one still in high school. On Monday, my youngest son was in a parade (he plays trombone) and my graduate son played taps first at church, and then at a ceremony (he plays trumpet). Yes it does make you tired, but I cherish every moment of it.

Next Monday, I get to go to my six month checkup which is actually 7 months because they had to move it because the doctor wouldn't be in town. The PA never got back to me about getting a PET Scan and I thought the doctor originally said he wanted another one in six months, but I kept asking her and she said I probably wouldn't need one. So I am a little nervous about the checkup. My recurrence surgery was in February of 2010 wherein the previous biopsied mass was removed and was found to be negative but a lymph node removed had microscopic cells. I have had three PET scans since then and all were negative. The one reason I was trying to get a PET scan is that my doctor is 3 hours away and I thought I could just get everything done on one day. But I have decided I am not going to fret about it.

How are you doing? I still sending my comforting hugs to you. Did you get to enjoy your weekend?

Kathy

Rewriter's picture
Rewriter
Posts: 497
Joined: Dec 2009

Wow, what a busy weekend; and it sounds as if you were a "good" tired. Congratulations on your son's graduation, and I hope that everyone had a wonderful time at the party. With the prospect of two out of three of your boys in college, are you feeling sad or excited about having a bit more time to focus on yourself?

You seem to be doing so well healthwise, so maybe your doctor feels that the PET scan is not necessary. As for your nervousness, it just goes with the territory, doesn't it? I had my surgery more than three years ago; my gyne-onc told me that almost all recurrences happen in the first two years; and I still am terrified whenever I go for my checkups.

The heat in NYC has been awful, so I don't mind being stuck inside editing a book. I will head to the beach one day soon, though. The advantage of being a freelance writer/editor is that I can avoid the weekend crowds.

Oh, and thank you for the comforting hugs. I seem to be fine about Eve, maybe because I feel surrounded by her spirit.

Jill

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Thanks, Jill.

It was a good tired. I am not feeling sad about two going to college. I am glad that they have studied hard to accomplish what they have done so far. It is exciting to see them grow into adults. All the time when raising them you wonder if you are doing the right things for them, teaching stuff. Then out of nowhere they surprise you and you sit back and say, "we must have done something right".

It has been really hot and humid here in Pennsylvnia too. The boys want to take a road trip to NYC. My husband and I took the boys last year for the 4th of July and stayed at the Mariotte Marque in Time Square. But we walked to see the fireworks and it would have been better if we would have stayed in the room because they closed the road. Anyway, the only time for us to go to NYC looks like the first week of August. (or over the 4th of July weekend again) since the boys are taking summer college classes.

Thanks again for listening. Sometimes just talking about stuff that might be worrisome seems not to be such an issue after talking about it.

Ok, it seems I am rambling now. It is past my bedtime!

Kathy

Rewriter's picture
Rewriter
Posts: 497
Joined: Dec 2009

Kathy--

Except for a few years, NYC has been my home all of my life. Let me know if I can help you plan your trip. I am an expert on hotels, neighborhoods, and all kinds of restaurants, from inexpensive Mexican joints to the finest dining. Although I now live in Brooklyn, I spent 35 years living in downtown Manhattan.

My bedtime has come and gone. Sometimes, I just like the quiet, when everyone else seems to be asleep.

Jill

Rewriter's picture
Rewriter
Posts: 497
Joined: Dec 2009

Kathy--

Except for a few years, NYC has been my home all of my life. Let me know if I can help you plan your trip. I am an expert on hotels, neighborhoods, and all kinds of restaurants, from inexpensive Mexican joints to the finest dining. Although I now live in Brooklyn, I spent 35 years living in downtown Manhattan.

My bedtime has come and gone. Sometimes, I just like the quiet, when everyone else seems to be asleep.

Jill

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Sending you hugs and prayers...

It is always so hard to lose but your gain in reuniting with her albeit a short reunion was for her a wish and hope of her lifetime.

As an adoptive Mom to two sons, I pray my boys can one day reunite with their Birth Mothers.

May you loving memories of her be forever in your heart.

Laurie

Rewriter's picture
Rewriter
Posts: 497
Joined: Dec 2009

for your comforting words, Laurie. I applaud you for wanting your boys to reunite with their birth mothers. My adoptive mother took every step should could to prevent that reunion from happening for me. Although I had all of the necessary information about Eve--and actually did contact her--I had to wait until my adoptive mother died before having a relationship with Eve. Good for you that you are not so insecure.

Eve and I made some GREAT memories. I can still hear her laughing. She was good at that.

Jill

Double Whammy's picture
Double Whammy
Posts: 2834
Joined: Jun 2010

I'm so sad to read that Eve passed on so quickly, but as others have said, she lived a good life to the end. I'm so pleased you were able to develop a positive relationship with her and she was able to know and hold her "sweet baby girl". That must have given her great comfort.

May you find comfort in your memories of her.

Suzanne

Rewriter's picture
Rewriter
Posts: 497
Joined: Dec 2009

for your very kind words. Yes, Eve lived the most amazing life. I can only hope to have as much enthusiasm for living as she had right up to the end. We were both comforted by having found each other. I am thankful every day that I did not miss that opportunity.

Jill

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