Using the forum and family members

[maryanne80]

Hi Kris,
I am the caregiver and my husband Joe has never been on this sight. He thinks it will depress him. I share some stories with him andsince we have a blog, I follow the blogs and tell him how those people are doing. I always mention Jeff as a long time survivor even tho he wa able to have surgery and Joe wasn’t. I need this site for info, support and to see how oehters are handling the situation. I am a nurse so maybe that helps me not get depressed about what i read. I see strength of spirit in cc patients and I know that we have changed our attitudes about how we live life becasue of this disease. We try to not waste time, or energy on unimportant worries, we try to see the good in people around us and enjoy the time we have. I need this website and thank the people who started it. I also appreciate the people who still come here even tho they hae lost their loved ones. mary anne

[scragots]

I come to this site everyday, if only to feel as if I am amongst people who understand how I feel. My husband loves me, of that I have no doubt. But almost a year after my surgery (can it really be almost a year???), it seems he has “forgotten” that I had cancer and I try not to bring it up when I am with him. He is always sympathetic when I do, and always says he understands how I feel and how it can be at the uppermost of my mind everyday, but he NEVER voluntarily asks me about it or how I am feeling. Of course, maybe that’s a good thing. But it would still be so good to feel like I could just break down and cry and get those hugs that I need.

But, I don’t. I just come here to see how everyone is doing and to feel like someone really does understand. The only person who really asks me how I am feeling is my wonderful step-mom, but I don’t see her very often, or even talk to her that much.

So…thank you for being here. For listening to me when I am scared, upset, frantic AND relieved. Thank goodness for this website…

This next week will be hard. I have my CT scan on Thursday and if it is okay, I will be having knee surgery the next day, and then two weeks later on the other knee. Maybe I can get some sympathy and some help for Christmas, whatcha think??? (And yes, I am almost done with my Christmas shopping…it helps to have an early deadline!!!)

Take care of yourselves, and thanks for listening!!!
Sue

[peter]

I concur with what all of you have said.
My wife, family and some friends know the link but I think few even glance at it. I have some family, and friends, who are able to be present with the fear, uncertainty and details and simply accept that it is part of my, and their, reality. For most however it’s easier not to look to closely, to each his own and I feel the same love and concern from them all.
I do talk about some people here, the changes and the losses, but only to the people who are able to hear it.

I’m thankful everyday for this community and both the support it has given me and the comfort I feel here in simply being able to be myself as a person with this disease. As I’ve said in other ways there are silver linings in crisis and I am fortunate to have had the time to find and know the gifts that have come to me as a result of the cancer.
-Peter

[devoncat]

Thanks Jules, Jeff, and Patrice.
I think i will go ahead and continue to be the sole user in my relationship. It does seem the easiest and I am not to keen on giving up my freedom of emotion. I think it will be for the best. Patrice, i too believe we are all in this together and as a team we can endure until a cure is found.

Kris

[pderat]

Hi Kris-Dave doesn’t come on this site. I share with him some stories, but for the most part he only wants good news. I have to let him deal with this in whatever way is best for him. I keep coming as I find it supportive and try to believe I support others and that someday we will find a cure together.
Patrice

[jeffg]

Kris , My wife comes and shares with reading the posts sometimes and can only read so much before it sinks in and then she finds something else to do. I mainly get on line when she is out or at work but she will ask how is everyone doing. I have giving her and my 30 year old duaghter the web site address so I imagine they are having a peek now and then. So I guess it is another one of those some can deal with it and others not.
God Bless,
Jeff G.

[jules]

hi kris

whenever I used the site I was always very careful to appear strong and in control, I was very aware that my Dad would not have been able to cope with seeing/reading that I was upset. Predominately I used the site for research purposes, since my Dad has died I have still felt drawn to the site for support (and been far more open) – however more recently I have been put off from doing this (this is a side issue).

Getting back to your question, I would say that I totally understand that you need somewhere you can vent, I did often wonder if my Dad felt curtailed in that respect by me being on here too. It’s a difficult situation and I suppose it depends alot on individual relationships however I would imagine that most people in this situation ‘hold back’ to a degree. Are there any cancer support groups/carers groups locally that Hans would be willing to try? I know that it is not easy with men and emotions, my Dad kept everything in and I remember wondering how on earth he coped with it, he was so brave although I often wished he had an outlet.

I hope that this has helped give you an insight into the problem, take care, Jules

[devoncat]

I am just wondering if there are many carers and their patents on here. What I mean is it seems like most are one or the other-that if the patient is a member, the carer isnt and vice versa. I am interested what it is like when both parts of the same diagnosis use the forum.

I very much believe that my husband would benefit from this site and posting here. Yet, I am scared to loose that one place of total emotional freedom to stress and worry and vent. Here, I dont have to pretend everything is fine and I can be raw if I need to. However, I feel selfish that Hans has no outlet for his questions and worry and to share his experience in the same way I have.

Can it work? Can both the patient and carer use this forum at the same time? I know that jules and her dad did but are there any others? I want Hans to have the same support I do, but I am selfish enough to want to continue to have here what I have now.

Does anyone have opinions on this or experience?
kris

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