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-- Patricia Gordon, M.D., St. Jude’s Children’s Cancer Research Center, Memphis, Tennessee

by Emma K., Australia

I had plucked up the courage to have my annual testing. My Mum died in June at age 74 after a difficult bout with cancer, so "plucking up" is the right word. I wasn’t concerned about going for the tests, just about getting the results! I was becoming more and more pleased as each result came back with a "no change" or "clear report." Smooth going so far!

Fortunately my husband and sister came with me to my last results appointment with my neurosurgeon. I really was expecting a monitoring kind of conversation, when he said that the lesion on my brain stem had doubled in size in the last year. I responded without great anxiety, "So when do you think you’ll want to operate? " My brain tumors have been slow growing, so I expected him to say next year or the year after.

He replied, "Well, I thought if I went in soon you’d be getting better by Christmas Day. The final decision is yours of course, but if you leave it a year you’ll be in a wheelchair." I was once again in a life-threatening position.

I picked my jaw up off the floor and asked a few questions. This would be my sixth surgery on the cerebellum since 1987. I said I’d be in touch with my decision. I left his office and said to my family in the waiting room, "Oh, s---!" My sister was great. She said, "It’s alright if you need some support now -- you don’t have to be strong." Having them there and hearing that was wonderful support.

As we sat downstairs in the coffee shop, in shock, waiting for our drinks to arrive, my husband said to me, "Life happens." There was not much said, as we immediatly realized the ramifications. We had all been very emotionally stretched already this year with my mother’s death and dying, and we were about to begin again.

There followed a week of deep thinking, faxed questions to my doctor, discussion with family, and conversations with my VHL support team -- Joyce in Boston, Peggy in Mississippi, and Gay in Sydney. All of them had helped me a lot during Mum’s illness and passing. At last I bit the bullet, girded my loins, and took the decision to have the operation.

Four weeks after the initial diagnosis and proposed course of action was suggested, I had the operation. Fortunately my surgeon operated in a hospital close to my home, so friends and family could ring me on the telephone and visit me easily. I was in a ward I knew, and some of the staff were still there from my first visit there in 1996, so it felt familiar and as "normal" as could be, given the circumstances. I returned home two weeks after the operation. The surgeon used what he called "Frameless Stereotaxy" (see page 4) to guide him during surgery -- it was terrific for me!

I want to share with you all my preparation routine for this operation and why I believe it went so well.

The whole experience is very unsettling emotionally and it doesn’t get any easier the more operations you have. How you manage the process becomes more efficient.

1. I read through all the VHL newsletters and copied out the articles "Science Isn’t Enough", "Plain Talk about Stress," "Families Share Diet and Exercise Tips," and "Living with a Rare Disorder." I found them very useful and comforting.

2. I used the supplementary medicine outline from the Alliance’s website.

3. I had massages and talked to wise people who understood my anxiety, not only about this operation but the sum of my experience living with this rare disease for thirty years and seeing it express itself in my father and brother, who died in 1979 and 1984, directly or indirectly of VHL.

4. I exercised very gently, walking around the block with my husband and our dog.

5. I had and have the healthiest mental attitude possible and am quietly committed to its never-ending improvement. Sure, its state of health varies depending on what’s happening in my life (I am only human), but I’m mastering recognizing how I feel and managing it better.

6. I invited my sister and her family to dinner. She is my only surviving immediate family. Everyone was still grieving over the loss of Mum. I told them I realized the risks involved, and told them I was sorry, but I can’t do anything about what is happening to me. My brother-in-law said that my apology was not accepted, and that they would all support me in any way they could. So for me, while it was awkward to express it, placing my emotional cards on the table was a great relief and won me some wonderful support.

The surgery was a success and the recovery is going smoothly. Here are my conclusions about why it went so well:

1. I prepared my mind and body as best I could.

2. My annual tests picked up the change in my brain before it became violently symptomatic.

3. I go to a neurosurgeon who not only analyzes well, but had the courage to suggest operating now! This meant I was not as physically deteriorated when I underwent surgery, so I didn’t have as far to come back.

4. He used the latest technology to assist him during the operation, which for me meant he used his time more effectively in planning his surgical route, getting to the tumor more accurately and quickly, and therefore spent less time in my head, which minimizes the risk of infection. It still took six hours, but he was able to go directly to the tumor. What a miraculous advance from my father’s experience in 1969, before CT scans or MRI’s!

5. I got lots of love and support from my husband, my family, friends, and from the Alliance.

6. The back of my head, neck and shoulders, arms and hands are numb. They change and improve daily, and I will be rehabilitating for a long time. If anyone has any suggestions, please send e-mail to the VHL discussion, vhlfa@egroups.com. I prepared myself for Christmas by practicing balancing champagne in a champagne flute, because as one friend jokingly said, "Drinking champagne through a straw is not very elegant!" We spent New Year camping with very good friends on the highest mountain in this country!

As printed in the VHL Family Forum 8:1, March 2000. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

mystory