Ask the Family

Question: Hi, I’m new to the group. I am going to have spinal cord surgery later this month. It is nice to think that other people have the same things wrong with them as me -- I don’t mean I’m glad they have problems -- I hope you know what I mean. It is hard to talk to people who are very close to you about this. At least it is for me -- is that true for you too? -- Stuart H., England

Reply from Loretta: I understand how you feel about talking about VHL. I find it easier to talk to people in the online support group than I do my family and friends. They are supportive, but those who have or are experiencing anything to do with VHL seem to be more supportive and helpful.

I had a tumor removed from my brain in April and 2 tumors removed from my kidney on the in October. I was really scared about the kidney surgery, but everyone here helped me get through my fears. I knew because of them what to expect, and I found the greatest comfort here.

It is hard to deal with, but if you need someone to talk to, I am here. If I can’t help you with certain things, someone here can. I still have my fears, and my down times, but the group pulls me through.  — Loretta G., Tennessee

Reply from Bob: I’ve been dealing with VHL since about 1993. In the beginning I did find it uncomfortable to talk about VHL, but you get over than. You begin learning about VHL, and you learn to explain it to your family, your friends, and most of all to your doctors. After a while it becomes less threatening and it sounds not as bad as other kinds of cancer.

You can’t let your guard down, you have to always stay on top of it. Good luck with your surgery.  -- Bob K., Florida