International Cancer Support: Connecting across borders in our Online Community

First!

Pat from Connecticut USA. And yes, my state is so small we don't have an East, West, North or South. I'm exactly 2-1/2 years into kidney cancer, and all the glorious joyful wonders it brings with it.

We have exceptionally good cancer and other medical institutions here, and the ability to enjoy the best of them. 

Some may still hold a place in their hearts for bloodletting and leeches, chanting and goat scat, but I'm getting used to technical advances, including those allowing family support, like this place. We have an unrelated genetic disability on the ladies' side, and we've done much for the organizations internationally supporting that. I only say this to indicate that we are well versed for >30 years in advocacy, engagement, public speaking/awareness and keeping caregivers up to date as advances are made.

I didn't land here for any reason at all. Purely random. Let's see if we can be of assistance to each other,

pat
:-)

Hi Kismet ,

Thanks for leaving a comment here. It's great to read that you have exceptionally good cancer and other medical institutions where you are. 

I'm sorry to read about the genetic disabilities and all that your family have had to go through but it sounds like you have made a great impact on an international scale. 

It's great to have you a part of our international Community. According to your profile, I can see that you have joined the Kidney cancer forum. I hope you find it helpful engaging in those forums. 

Take care,
Dylan

We found that it is a fairly common thread across all ailments that the money and attention goes towards research, and family support is left unfunded, on the back burner as an afterthought. There just isn't any money or publicity in helping families deal with having these things in their lives, but if they can make a weapon out of something or a famous person gets it, then the visibility helps everyone. 

That "Enter to reply" keeps getting me every time!

Because we aren't scientists, nor do we have big checkbooks or looking for tax deductions, we found that virtually anybody is ideal for one-to-one or family support, public speaking and sharing their experiences as an expert as long as they have or have loved ones with whatever the condition or thing is that we're talking about. The hereditary ailment, for lack of a better word, in our family is TSC, which is an abbreviation for tubular sclerosis complex. Being as it's rare, nobody famous has it, and they can't make a weapon out of it, like all the others it remains virtually unfunded. 

But you don't need money to inspire people. You don't need money to tell a family who is just told by an out-of-date doctor that their child is going to die that the doctor is many years behind in their knowledge and that that their child will likely live a perfectly fine life. The doctor, especially if a GP not close to any medical centers, has no need to keep up on what in their neck of the woods is considered quite rare. Unless you were in a big city, certain types of ailments are just never heard of, yet people have to rely on these caregivers, and unfortunately many of them have big thick Dusty books around them that were made in the '70s to go by.

So the call call to family support is pretty clear, and the formula is quite simple. Virtually everybody who is misinformed comes from a place where they are the only people that have whatever it is we're talking about. They don't know or have even heard of a single other person who has the same thing they do, and they wouldn't even know how to reach out and find them. 

I just thought that maybe someone would get the wrong idea by my using the term "family support", and because I am new to the lingo and slang here, I should probably clarify. Family support when it comes to things like cancer or other kinds of ailments that make drastic changes to your lifestyle, your body, or your family life, means being there for those who have what you have, so you become a source of accurate information they can trust. You've both been there, you both got the T-shirt. 

Family might be assumed to be supporting the whole family as some sort of unit or something, thinking group sessions or some kind of thing like that, when in actuality it's far from that. Family support just means that these kinds of things like TSC and cancer, don't affect a single individual. They affect the individual and everybody around them, and we loosely refer to those people as their family, whether they are related or not. A person could be on their own, literally without anybody else, and helping them get to the resources they need, consoling them on their next steps, dispelling medical inaccuracies, are all considered support in the same fashion.

Now that I have belabored that point, trying to establish a common denominator, there is a tremendous need in all countries for people who can mobilize or communicate or attend conferences or whatever to get into contact with those that are newly diagnosed, feeling emotionally at their Wit's end, and basically anybody who could really use it. 

From what I can tell, this particular Forum is right along those lines, which is why I joined out of interest, even though cancer is just one of the things that is impacting my particular family. 

As for my profile, yeah I could fill that out quite a bit more, Pat I've been doing this a while and I've got this really strange attitude toward laying out everything that is wrong or that I'm dealing with, etc. Because it can create a negative or adverse feeling for others who see this kind of itemization. I have witnessed people getting jealous, I'm sorry it's just the best word, of other people who speak of dealing with something that are not as bad off, as if they haven't earned the right to talk about what is wrong with them because one person doesn't have it as bad as another. I know it doesn't make any sense; I'm just telling you it happens, and I'd rather avoid it. If you don't know what I'm talking about, please reach out to me in PM. 

Support and camaraderie should not be contestual, but there are times when people just can't help but be human. It's all part of the psychology of frustration, of being helpless, and the stages I mentioned in another post. 

Thanks for not letting this old cranky yank feel like a stranger, Dylan - Macmillan !

pat

I guess I haven't been a member long enough to be able to edit my posts, but my speech to text decided to turn "Tuberous" above into "Tubular", which would be fine for the California beach scene, but if you tried to look it up in a medical journal you'd probably come up dry!