Staying Involved

I have stayed involved and continued to participate with a couple kidney cancer groups.

Do I want to continued? I feel that I learned so much from these groups over the last 4 years and being able to give back is good. But it’s getting to be a hard thing to do.

There are a couple of new drugs and treatments that sound so promising and these will hopefully be approved and available in the next year or so……a year or so too late for Ken. I’m glad that many people will be able to benefit from these but it makes me very sad that we’ll never see any benefit from them and that is hard to take.

I don’t do all the research that I did….no reason to now….so I’m not sure that I really have a lot to offer anymore, other than experiences that we had and even those are kind of “old” now.

There is a patient education meeting coming up in October, which I’m involved with. I’ve passed on the meeting posters to someone that still goes to the cancer clinic so they can get them up and the word out about the meeting and I’ll do the registration for the evening. Our Onc is one of the speakers. I’m still a little annoyed with him…..but I keep telling myself, it is what it is….get over it! And I will, but it will be hard to see him up there talking about treatments etc. knowing that none of this will help us….or worse still….wondering if there wasn’t more that he could have done….that is what makes be a little bitter.

These groups were so much a part of my life…..every day, sometimes I’d be on there a few times a day…..I didn’t want to miss any new bit of information that could have helped.

It’s still hard to not go online and check what’s happening on the discussion forums, it’s a habit…..a hard one to break. But maybe I need too.

I don’t know how much longer I’ll participate. If I felt that I could help to make some changes to the whole system….move things along a little more….like getting the government to get the approval for these meds through a lot quicker than they do….too much bureaucratic red tape….we’re always a year or more behind the US for these things, which is ridiculous. They are a little slow here with using radiation too and some of the interventional radiation procedures…..if I could do something to get them to use those more often…maybe I’d continue. But it all seems so futile to me….changes like this don’t happen overnight and it takes more than one person to make them happen.

Maybe it’s just time to move on….leave this chapter of my life behind. I don’t know!!

L.

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4 thoughts on “Staying Involved

  1. Linda, whatever you decide I want you to know how grateful we are for your wonderful contributions to Smart Patients over the last year or so. I’m so very sorry that you needed to join us at all but feel lucky to have known you and grateful for all your advice and feedback. I wish you the very best in whatever is next for you and may the road you choose to take be blessed wherever it may lead.

    — Kevin

    • Thank you Kevin! SP folks are my friends and it would be very hard to give them all up….they have been there for me and the ACOR folks before too. It’s like a habit now to just sign in once or twice a day and to see what’s going on….habits are tough to break, so I don’t think I’ll be able to sign off completely and hopefully every now and again I can still contribute something. I don’t know where I’m headed yet…that road still seems like a pretty long one at this point, but we will see.

  2. Hi Linda,
    I hope you will find a way to stay involved with Kidney Cancer Canada in some way. There are so few knowledgeable patient advocates for rcc — we would hate to see you disconnect altogether. That said, I think we can all understand how you feel. If there is a way that you can stay involved, please know that we would WELCOME that very much. One day I will not be involved so much, but for as long as there is such a need, I feel that I can’t quite walk away either. Perhaps if one of these new treatments really turns the disease trajectory around, we will have a very different role in the future…
    All the best,
    Deb

    • Hi Deb, I don’t think I’d be able to let go completely and I do want to be able to give back some of the help I’ve gotten over the last few years…..if nothing else just offering an ear to listen. We just seem so removed from everything out here, even our treatment protocols seem to be somewhat different, radiation being a good example. I would like to see some changes made in that area as I think more people could definitely benefit from it and staying involved is really the only way to see that happen by encouraging others to ask their Drs about it. Some of the new treatments do sound pretty exciting and hope to see our approval processes sped up so that we aren’t months, or even years, behind in seeing them available for everyone.

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