Snookie's Story

[Nightingale]

I have interstitial cystitis. I’ve had it for over 20 years. We were posted in Italy when I took sick. Interstitial cystitis is a disease whereby the lining of the bladder separates from the wall.  It bleeds into your urine. You get all the same symptoms of bladder infection or bladder discomfort of someone with bladder cancer.  It isn’t bladder cancer yet but it could become bladder cancer if it isn’t managed properly. I was on a drug regimine for 17 years where I injected into my bladder through a catheter a cocktail of heparin and marcain (sp?) sometimes three times a week. I was getting to the point where I wasn’t getting good enough results from the injections.  They weren’t giving me relief. My urologist, who is my saviour, said that he had heard of this gal that does pelvic therapy.

Pelvic therapy is a kind of physiotherapy whereby they go inside your lower extremities and massage the myofacialtissue to help relieve the discomfort that you are having in your bladder, your rectum, any of those areas.  She got me off my drugs.  I haven’t been on them in 3 years. She has been my little saviour. I’m not cured. I get my little bouts but I’m managing them and I don’t have to go back on my drugs, thank God. So that’s my story.

It just so happens that David Guttman (co-founder of Bladder Cancer Canada), who lives in Toronto, is my late cousin’s best friend. I met him at the funeral. David said that he could really use my help with bladder cancer in Ottawa. I asked, “Okay, what can I do?” He said that I could start a walk. Five or six years ago, I started a walk with maybe 15 people.

I got my urologist on board about the bladder cancer fundraiser walk but I didn’t know any patients with bladder cancer or bladder disease at that point.  I said to my doctor that I need to start a support group to find these bladder cancer patients. He said, “I’ll help you.” They now refer patients to me all the time.  They have seen the results I give in my support group.  They send me patients before and after surgery, at very different stages of their disease. They don’t know what type of surgery to take. I refer them or marry them up with other patients that have been through the surgery and they are able to make a better decision. That is what really works well. Once they see the comraderie in our group, they just hook on and just fall in love with this group of amazing individuals that have the same challenges and feel the same discomforts and face the disconnect with people that don’t have bladder disease.  They are very happy to find someone to talk to about their challenges and to share advice.

I try to bring in speakers or people that will help them with their challenges. I do one a month.  We are very fortunate that we have the Maple Club centre.  We get the facility for free.  In the summer we do a barbeque and we do a party at Christmas. I try to make it a fun experience as well as a learning experience.

When other people with bladder cancer come to me, I listen.  That is the most important thing. I hear what they are thinking and what their needs are. I put myself forward and try to help those needs.  I hope that my perspective comes through. I feel that you are part of your environment. If they see a positive person as a result of what they’ve been through maybe they can do it too.

I haven’t had cancer but I’ve had my own share of maladies.  I’m not completely out of the picture.  I’m at risk (for bladder cancer) so I understand where they are coming from. I feel that the best thing that I can do is offer my support, understanding and caring. The other people in the support group offer their advice and knowledge. I make sure that we all hug when we see each other.

It goes to show you that it is not a man’s disease. I counted the attendees at my BBQ event last week and it was almost equal women as men. I think it’s changing.

Previously, women were often misdiagnosed. It was looked upon as a bladder infection or irritation.  The area down there is all related.  Even when I was in Europe, they couldn’t figure out what it was.  When I got home, my doctor referred me to a urologist they had it figured out in two minutes.

Also the urgency thing that sometimes happens with bladder cancer is explained away as just having an over active bladder. If you’ve had children, your bladder is distended…they find other excuses. They are not used to understanding what bladder cancer is.

I could have just gotten lucky with the group, I don’t know.  I still can’t get a big crowd for the Bladder Cancer Canada fundraiser walk. I’m lucky if I can get 250 people together.

I know for myself I will eventually move the walk to a park but right now we walk in the downtown core.  It is to bring awareness to bladder cancer.  If you walk in the park, no one sees you but the people in the park. So I’ve chosen to do this in the hopes that it will bring awareness. I also give pails to kids to be able to collect change.  We also have a memory board that lists those that we’ve lost that year and walk in their memory. We started that a couple of years ago. I look at the challenge of the money that we are trying to raise. I think that we won’t get there.  It is a tough year. A lot of my members are seniors and aren’t as active and can’t even do the walk so they come and help with the registration and things like that.

I have other health challenges. I have other autoimmune diseases.  If you have one it makes you susceptible to others. I have fibromyalgia, arthritis, sclerosis, and more. You don’t want to know them all.  I’m 70 years old and very strong. I work very hard and keep active.

I try to keep my body very active. I try to go to the gym. I try to keep a positive attitude and don’t let it get me down. I keep proactive and busy. It is a personality thing.  When you tell someone that you are 70 they think that you are old already.  I tell them that it doesn’t matter. It is just a number.  I don’t feel 70. I keep the ship going.

I’ve tried meditation. It’s okay. I do yoga. I find it very beneficial.  I use it as a practice before I go to the gym. I am giving and open. It is better to give than to receive, I’ve always been like that. That’s who I am.  I don’t look at a glass as half full or half empty.  I look at what I can do to fill the glass.

I’ve been like this most of my life. I changed as a young girl growing up. I remember I was mixed up as a teenager as most of us are in adolescence.  I went to my spiritual leader, a rabbi. The best advice he gave me was to believe in myself.  I live by that and believe that I’m doing the most and best that I can. I taught my children that.  I feel very blessed to have had the opportunities to give and share with bladder patients and their families.

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