Grieving already
 

Hi folks

I'm a newbie here. My sister Kelly was diagnosed last week with secondary cancer in a lymph node, sternum and in her liver. She seems to be coping amazingly well. I, on the other hand, am a mess. I just can't seem to stop crying. I feel as if I've lost her already and that I'm grieving too soon. I'm desperate for any advice on how I can live in the moment and enjoy the time I have left with Kelly. How do cope when your world is turned upside down?

B

Re: Grieving already
 

Hello Biddy. This is a time when your sister needs you to be strong for her. I know it's easier said than done, but she needs you to be there for her and to give her support and hope. When I went through my diag. 8 years ago, my sisters, friends and family were there for me and helped me get through all of the tests, decisions and treatments. My son came to my house the day I was diag. He sat in my livingroom and said "Mom, you have a 28% chance of surviving and I know you can do it." I will never forget it. He gave me hope when I needed it so badly. Well, he was right. I have survived 8 years with Inflammatory Breast Cancer. Pull yourself together and be there for your sister. It will mean so much to her and to you. Best wishes, Mary L

Re: Grieving already
 

Hi Biddy,

There are a couple of 'long-term survivor' 'long-time survivor' threads you can access by typing into the 'Search' window. There are several newly diagnosed who have participated in T-DM1 and have very good result.

'Cancer' is always a shocking word. The old, grim news about Her-2 doesn't help when we look up literature on the subject. However, since the advent of Herceptin, Her2 has become one of the most treatable breast cancer.

And new technology is bringing everyone hope. I was just told that one of three small tumors (Central Neurocytomas - unrelated to BC) has the potential to block the CSF flow in my brain. I've had Gamma-knife nine years ago to curb the growth and thought I might need to 'Gamma' it again. But then I search the PubMed and found out there are newer, more versatile technology/machines for treating tumors in different parts of the body. And our local hospital just purchased one (Novalis Tx) in June.

I know how hard it is for family members to be in this kind of situation. I was quite 'happy' when my life-long brain tumor was found even though there were a couple of days before the surgery when I suddently got 'frightened' (just the toughts of someone cutting into my head...) Yet while I was being wheeled into the surgical ward with a smile, my family members were all under tremendous stress. My Oldest Brother, who had come from overseas - representing my side of the family - literally wept. He got tears in his eyes again 5 years later when my husband and I went 'home' to visit my family.

Positive thinking increases the release of endorphin in our brain and improves the immune system to fight all kinds of diseases. Please help your sister remain positive. Please let her know that she's got a legion of fellow fighters here supporting her.

Re: Grieving already
 

Dear Biddy,
First of all...Kelly is extremely lucky to have a sister that loves her so much. I was fortunate to have 2 sisters that I knew I could count on for anything I needed. That was huge and I am sure you are up to it.

When I was diagnosed my oldest sister came to visit because she wanted to have some time when we could have fun, she was afraid that I would be bedridden and then die.

Well....here it is 3+ years later and through the entire process I've lived a very full life. (ok....interrupted at times which is frustrating) The key is, by coming to this site I saw that there were women who were active, full of hope and were incredibly knowledgeable. Please encourage your sister to come to the site.

I am glad that you found us and are welcome to ask questions, vent, admit in open how frightened you are because we all understand.

Here is to many more years with your sister!!!!

Re: Grieving already
 

Biddy,

[How do cope when your world is turned upside down?]

This was similar to the question my husband asked Oncologist#2 when I was diagnosed with secondary cancer in my liver. Although it was hard to believe at the time, her answer was both wise and true: "You just do".

That was a terrible time for both of us, as it is for you and your sister now. I am starting to cry right now as I write this and I'm not sure if it is for you and your sister, or me and mine. Probably both.

I agree with all the responses so far, and am sure you will hear from many others who have walked that path.

It's natural to grieve - you may feel that you and Kelly's dreams of the future have been stolen from you. That may or may not be true, but you will definitely have a different awareness and reverence for life.

But do not lose heart. You do not know what the future holds! True, science is running very fast and I believe the answers are nearly within reach. In the meantime, doctors are beginning to look at this as a chronic disease that can be managed, sometimes for a long time. True, there is not yet a "cure" but even if not curable, it is treatable. I know several who I believe ARE in fact cured of liver mets, it just isn't proven.

My advice for how to live in the moment and enjoy the "time left" with Kelly is this:

First, remember that you do not know what the future holds, or how long that future will be.

Second, (this really helped me, but then I am a little twisted) think about how stupid you'll feel 20 years from now - with Kelly still right there with you - if you've wasted it all worrying about death!

You just have to take it as it comes. One step at a time, breathe in breathe out. Appreciate every day for what it is.

And just love her.

chris

Re: Grieving already
 

Thanks guys. I think that I've been afraid to let myself have any hope, that I've been preparing myself for the worst, but I can see that by doing that I'm not doing myself or Kelly any good.

But I have already got some hope from your posts. To have years left with Kelly would be amazing.

Chris - your post especially touched me - thank you.

You are incredible people.

B

Re: Grieving already
 

Hey Biddy,
Passing along more hope!!! I just returned from receiving the results of a liver CT scan. After cryoablation in August and 3+ months of Navelbine I am back to NED. (No Evidence of Disease)

Yahooo.....an example of just taking one step at a time.

I know Kelly can do it!!! Lori

Re: Grieving already
 

One of my best friends in the world was diagnosed with Stage IV breast cancer back in the late 1980s. She lived in England. She came to me for Christmas 1990 and I went over for a long weekend in the fall of 1991 to "say goodbye." I was a mess. She had mets in her spine, abdomen, liver and they were pretty sure her brain. She was still very active but as she put it, "a little peaked." She had had intensive chemotherapy and radiation, but she refused surgery, saying she "would not have her body cut open." She also did a lot of alternative stuff - acupuncture, mistletoe injections, working with a lay witch, etc. Yes, she was a little crazy, but she was my soulmate.

Fast forward to today. Both of her daughters had baby girls this year. My friend (yes, she is still around! 20 years later) has come back to London from traveling through Majorca with her lover in a VW bus to dote on her grandbabies for a few months. We talked by phone last week. I asked her was she "clear"? She laughed and told me that due to a huge fire at the Marsden Hospital a few years ago, all her records had been destroyed, that she thinks she still has a little spot near her pancreas but she doesn't pay much attention, she feels fine, and that since it's now three years since her last scan, she should probably go for a checkup.

When she came for Christmas that year, we were in Macy's together, and I made a wish under the holly. She asked what I'd wished for, and I told her, "I wished that you would outlive me." She was horrified. "TAKE IT BACK!" she told me. "You're likely to be hit by a bus when we leave here!"

I didn't take my wish back. I think it will probably still come true, and we'll both die of natural causes, in old old age.

There is LOTS of hope for your sister, Biddy. More hope than not hope.

Re: Grieving already
 

Hi. Your sister is sure lucky to have you.
I was just married a week ago to a beautiful lady that while we were dating found that her breast cancer had come back, and since we have been togather has had to have her breast removed and is at pressent going through her chemo and then a year of herceptin.
All I can do is be there for her and love her and keep her spirits up because her attitude will be so important in beating this, and you keep your sanity.
It was a week ago last Saturday that we got hitched and all is right with the world. Just put a smile on your face and fake it till you make it.
Thanks for being there for her.

Re: Grieving already
 

Thank you for that story Kiri's mum.When I was dignosed with mets in 2006 I told the onc I wasn't interested in the survival stats (they are just sooo dated) but wanted to know that there was at least one person in a similar situation to me who had survived for a long time-say 20 years. He said yes and that was enough for me (the median is not the message as....famously said-chemobrain alert- I've forgotten the name of the famous scientist who said that 18 years after his 18 month prognosis! ). I particularly loved the bit in your story about the lover, the VW and Majorca.
May there be many more relatives and friends like Biddy and sdh.
Trish

Re: Grieving already
 

Biddy, how is Kelly doing?
I so understand your feelings. Lately I have been coming unglued worrying about Kiri, with all the complications she has been through lately, now off chemotherapy and waiting (and waiting) for her mastectomy surgery to be scheduled.
I know when I can talk to her, or even better, be with her, I do much better. I hope you have been able to spend some time with your sister.

Trish, I think that was Stephen Jay Gould. An amazing man.

Re: Grieving already
 

Thanks Kiris mum. I too hope Biddy and Kelly are doing well. I'm sure we will hear about your extraordinary Kiri when there is something to report.
Trish

Re: Grieving already
 

It took me a while to locate this thread - I dug up my Stephen Jay Gould book, Questioning the Milennium, and right away couldn't remember which thread had led me to my action. Thanks to the 'search' function... :)

And then I found this link to Dr. Gould's word. Thought some might like to read it as well:

http://fog.ccsf.edu/~abair/median.pdf


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Reply
 

I just love the response to "How do cope when your world is turned upside down?" You just do! How very true. Many of us here have faced the big C and are still around to support others. Praise be to God for the strength that we have and the power to help others. I'm often reminded that so many face this vicious foe and we need to be here with words of encouragement, love, and a shoulder for others to lean on.

So chin up girl and face the fight. You can do it!

Re: Grieving already
 

Trish - You may have quoted a play on words. It was Marshall McLuhan in his book "Understanding Media" who coined the phrase "the medium is the message." His works focus on the influence of electronic media on modern peoples.

Media has had a huge influence upon our lives, and this web site is a good example of positive influence.

Re: Grieving already
 

Well this medium is certainly very positive for me. Do you think Marshall McLuhan would see it as a "hot " medium given how engaged we are? Mind you I still love radio.
Would love to know how Biddy and Kelly are going.
Trish

Re: Grieving already
 

Yes - Biddy - please post on update.

Funny, Mr. McLuhan wrote his works long before the internet or even personal computers were thought of!

Re: Grieving already
 

I know but I'd love to hear his perspective on social media.
Trish

Re: Grieving already
 

Hi everyone

Sadly Kelly passed away on Monday. Her cancer was very aggressive and didn't respond to treatment. I'm devastated. I don't know how I'm supposed to go on with normal life, yet I know I have to. I still can't quite believe it has happened. Thank you for all your kind words of support.

Biddy

Re: Grieving already
 

Oh Biddy I am so very sorry. My heart aches for you. I hope you and Kelly were able to share some precious times in the past few months that will help you get through this. Right now you must just be in a numbed state of shock. It's so surreal when someone we love is taken from us. One foot in front of the other, take care of yourself emotionally as much as you can, reach out and accept help from others. You have my deepest sympathy on your loss. :-((