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Scared and lonely 
Started by Sissy
03 Aug 2014, 4:54 AM

It is great to see that some people post and someone may answer!  

My sister was diagnosed this week for the first time, with stage 4 lung cancer.  We went to emerg because of her headaches. She was sent home from emerg several times over the past few months.  

She had surgery to remove one of the brain tumors and I hope that was the right thing to do.  She lost half her vision and says everything looks like negatives and it is disturbing to her.  

She is home and I am dealing with elderly parents, and feeling responsible for everyone, including my 3 children 8, 7 and 3.  My business.  I just don't feel I can cope, but here I am so I must be.  We just adopted the two younger girls 2 weeks ago and then this happened.

I just want to scream but I can't get to be alone, there are so many calls, so many things to do, so much to learn.  I am the P/A and my sisters request is to try everything and the doctors are setting a protocol for quality of life, not trying to be cancer free.  She is not old and was in great health, so I don't agree and neither does my sister.

The pain killers make her talk non stop.  It is so stressful and I can't even imagine life without her.  We ran a business together and have done everything together our whole lives.  I feel in such a state.  How do you know that the doctor is doing the right hting.

The very same day, another friend went to Credit Valley due to a seizure and unbelievably has the exact same thing as my sister, same lung, 4 brain tumors,  but because they are a cancer center she went straight to radiation and paliative care in less than a week.  Now my sister is home with my 83 year old parents trying to care for her after 2 brain surgeries.  This just isn't right. She needs 24 hour care because she can't see, could have seizures.  

From the panel here, what questions should I be asking?  Does anyone have any opinions on Juravinsky vs Credit Valley vs  Princess Margaret?  We don't care about location, we care about her getting to the right place with someone who will actually try to cure her instead of just saying it is terminal. We are all terminal.  There is a hope and stat, however small that she could actually beat it.  

Its the long weekend and we are stuck in limbo, with no doctor even following her.  Waiting to hear from an oncologist.  Also I read that you have to join clinical trials before your first chemo treatment or you can't join them.  There are so many how do we know?

Can my sister get stem cell treatment (we have chord blood).  She is interested in measles therapy - anything that works.  

Scared, lonely and needing a shoulder! 
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Reply by moderator | modératrice
03 Aug 2014, 2:55 PM

Dear Sissy,

Welcome to Virtual Hospice. I'm so glad that you found us. You surely do have a lot to handle. And, as you point out, you are!  

You ask so many very important questions. I would encourage you to continue to ask, especially your health care team. You may benefit from getting a second opinion from another cancer centre. The 3 you listed are all excellent cancer centres. You may wish to ask some of your questions to our experts on Ask a Professional. They will send you a private response within 3 business days. 

At the moment, I think you can use all the listeners and help you can get - from professionals and from people who have been there like the people here on the Discussion Forums. We're here 24/7. We listen and can offer a virtual shoulder. Sometimes just that can help to get from one moment to the next. 

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Reply by heatherh2408
05 Aug 2014, 2:07 AM

Dear Sissy,

My heart goes out to you.  I'm thinking of you sitting with so many overwhelming things all through this long weekend and, if I could, I would put my arms around you right now.  I am a breast cancer survivor of 5+ years and I have a very dear and close older friend who has survived lung cancer, twice, within the past 7 years.  I remember, the first time, before my breast cancer.....I called her not knowing what to say and I'll never forget what she told me:  "This is just a blip on the screen of life."  I went with her for chemo several times, and she never lost that attitude.  Although I found it hard to believe, she maintained that belief and, when I was diagnosed, I borrowed it from her.  I know Colleen here is smiling and nodding as she reads this.  I have so many stories, but they can wait.  

Your sister's situation is, understandably, completely overwhelming for her, for you, and for everyone whose lives connect with both of you.  Colleen is right, I've heard nothing but good things about the cancer centers you mention, and a second opinion can often be a good thing.  We go through so many stages on the cancer journey and, although fear can be the most difficult, we do not have to do it alone.  I live in Ottawa, and we have an amazing psycho-social program at our centres which helps the cancer patient in so many ways from pastoral care to financial counseling, and so much more.  Your sister will undoubtedly be able to take advantage of similar programs.  There is support for caregivers, too, and I think if you ask the professionals here, they may be able to provide you with information about peer support for yourself.  You have a lot on your plate right now with three small children, a business to run, and helping your sister, too.  It is more important than ever that you take care of yourself right now.  If you have faith in a higher power, this is the time to lean on that faith.  Reach out, to those who can help you, and to those of us here who have experienced the cancer journey ourselves and with others.  We will always be here to listen to you.  We understand, and you matter to us.

You're in my thoughts and prayers, Sissy, and I'll be checking in here to see how your sister is doing and how you're coping.

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Reply by heatherh2408
11 Aug 2014, 11:02 AM

Hi Sissy, I was just wondering how you're doing?  I've been thinking about you.

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Reply by The twin brother
03 May 2016, 10:06 PM

My twin sister was just diagnosed with cancer today and I'm so so scared I don't know what to to do I want to be strong for her but I just cant and I'm afraid I loose her just like I lost my brother.
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Reply by heatherh2408
03 May 2016, 11:09 PM

Hi, Twin Brother,

i just received a notice notice that you had posted here, so I thought I'd stop in for a minute.  I lost a sister to cancer and my Mom died fifteen years ago today from cancer.  I'm a breast cancer survivor myself - over 7 years now.  Having been on both sides of this news, I would have to say that it's much more difficult to hear it about someone I love than it was to hear my own diagnosis.  If you feel like sharing, I am here to listen right now, and you will find a wonderful supportive network of men and women here who will also sit with you as you feel the emotional highs and lows that you're going through the right now.  Whatever your feelings are, this is a place where you can safely share them, and where they will be honoured by those of us who know those feelings so well.

Please know that I am thinking of you this evening and praying for you and your sister.

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Reply by NatR
07 May 2016, 3:00 AM

Dear twin brother
i am so sorry to hear your sad news - but glad you have found this forum for support and encouragement

you have a lot on your plate but sharing your feelings and thoughts helps ease the worry and burden 
do you live near your twin?  are you getting support from the healthcare team caring for your twin? 

Being ngs able to express your fears and feelings helps you feel less alone - we try to support and help as we can
caring for a loved one is such an important thing to do
know you are not alone  
best wishes
NatR 🌷 
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Reply by KathCull_admin
10 May 2016, 2:47 PM

Hi Twin brother,
I have been thinking of you over this past week. Having lost your brother already I can only imagine how frightening that word 'cancer' must be for you - and your family. 

For some people getting more information can be helpful - are you able to talk with your sister about what the medical plan for her might be?

Being strong' can be a daunting task. Do you have a safe place where there are people you can lean on?

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Reply by Carlyn
17 May 2016, 5:37 AM

Hi Twin Brother,

Until you know all the facts, deep breaths, one foot in front of the other, and keep communication open with your sister as much as you can comfortably for both of you. She may be reserved about opening up. If that happens or you sense it, reassure her but be honest how you feel. If that sounds like it would fit well with your relationship I mean. Everyone is different. 

I'm thinking of you both.

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