Patient Support — Bladder Cancer Canada
Up to this point…
You had a symptom, you sought advice, you underwent tests, you had a follow-up consult, a referral to a urologist, a further examination, a cystoscopy, further blood and urine tests, maybe another imaging scan, a TURBT to remove tumours from the bladder, a follow-up pathology report followed by BCG treatments.
You may not have had that total experience, but that is where I was at in my journey from diagnosis in early January, surgery in March and BCG in May/June (first six weeks of induction).
In a time of “all clear”
Coming through all of that, you might now be at a stage to plan your continued journey with bladder cancer. Those of us with non-muscle invasive bladder cancer are reminded and conscious that there tends to be a high disease recurrence. In that regard, we tend to think of how to ensure the cancer does not return. Given that I underwent 18 installations of BCG, followed by three-month check-ups, extended to six month check-ups and then annual check-ups — I’m feeling pretty good with my latest “all clear”.
However, I know that I need to be in tune with my own body and be on the watch for any possible signs and know when I might need to dial back in with my urologist. For instance, on one cystoscopic examine two nearly two years ago, a small blood mark appeared and was burnt off. Thus I am back on a cycle of “six-month” cystoscopies — “all clear” in the past couple of weeks.
Seeking Support
Through my own journey, I had initially reached out through the Bladder Cancer Advocacy Network of America (BCAN) and their Inspire Network. When I was googling then, that was the most prominent patient support network. Interestingly, they were kind enough to refer me to Jack Moon in Canada. Jack is one of the Co-Founders of Bladder Cancer Canada. He and David Guttman founded Bladder Cancer Canada in 2009. In the past couple of years, thanks to some support through Paul Kraemer and his expertise, Bladder Cancer Canada (BCC) has worked hard at rising up through the google search ranks and are positioned well as the Canadian patient support network.
Defining Your Support Needs
Depending on your own personal needs, you will know what kind of support you require. My first suggestion is to rely heavily on your family, loved ones and neighbours. They are undoubtedly concerned for you and want to help you along your journey. Take them up on it! On the patient support front, I strongly (remember I’m past volunteer Chair…) recommend the resources at Bladder Cancer Canada.
Bladder Cancer Canada is there for you. They/We offer patient support through a number of different channels. There are terrific patient guidebooks covering the range of bladder cancer that you might be facing. There is a helpline and contact form. We have a presence on all social networks — Facebook (main page and community pages) — Twitter — Instagram — LinkedIn, where you can engage in a direct and personal conversation or post publicly for others to learn. We have a discussion forum moderated and managed by a team of volunteers to guide you along your journey. BCC also has a YouTube channel with past webinars and presentations that will support you along your bladder cancer path. In several centres across Canada, there are ongoing patient support groups for people to engage with each other and share learnings from their own experiences with bladder cancer.
Supporting You
No matter what your needs might be as a patient with bladder cancer — the team at Bladder Cancer Canada is there to support you.
Wishing you well.
