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39 www.vhlcan.ca/patients--family-members (Stories)
last 6 months as of Aug. 1/19
Since I've had lots of VHL treatment between age 15 and 49, here's further comments and input on the factors related to "resilience" and coping...
I continue to find support with psychosocial resources (talking, financial, medication). Over the years, most of my contact with professional mental health people has been brief with trusted colleagues, or actual community-based/private helpers.
Beyond family members and friends, Self-help and support groups, books, and online resources may be sufficient. At times, however, an individual might consider at least 1-3 meetings with a professional in-hospital (or private) help.
Here's another excerpt from APA (American Psychological Association) research and tips that support my personal experience.
“A combination of factors contributes to resilience. Many studies show that the primary factor in resilience is having caring and supportive relationships within and outside the family…”
Let's hear from everyone on this issue!
This is an article that I like re-reading because it reminds me to relax and feel like a VHL warrior (or ambassador). I also think it can apply to different people's situations because it uses principles that are research-based in psychological and social sciences and inspiring imagery. However, it's just offered as "what has worked for me" (peer info support).To help summarize several of the main points in this brochure, resilience is compared to taking a raft trip down a river, “it helps to have knowledge about it and past experience in dealing with it. Your journey should be guided by a plan, a strategy that you consider likely to work well for you.
Perseverance and trust in your ability to work your way around boulders and other obstacles are important. You can gain courage and insight by successfully navigating your way through white water. Trusted companions who accompany you on the journey can be especially helpful for dealing with rapids, upstream currents and other difficult stretches of the river…”
The Road to Resilience - APA
VHL Awareness in Canada/VHL Canada Website Numbers
1 year totals (May 7, 2018 to May 7, 2019)
Page views: 2,322
Unique visits: 990
First time visits: 737
Returning visits: 253
Average daily Page views 6.3
Average daily Unique visits: 2.7
Average daily First time visits: 2.0
Average daily Returning visits: 0.7
Last 6 months (see charts for details)
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Good to know? What do you think?
As I sit here feeling very sore from my surgery last week... I'm reflecting on some ideas that have helped me through this recent storm
"Developing resilience is a personal journey… An approach to building resilience that works for one person might not work for another. People use varying strategies…" APA
"There are many factors that affect a person’s health. Some things, like genes or age, cannot be controlled. Many things, like sleep, nutrition, and exercise can be controlled. A healthy lifestyle will help improve your overall health and well-being... It is important to live a healthy lifestyle, but being healthy means different things for different people…" vhl.org
"It’s hard sometimes. I try to exercise, see family and friends. I try to constantly remind myself how far I have come, how strong I am. I have great family/ friends. I tell myself I’m still walking and talking. Walking may be hard and slow at times but I’m doing it. Lol" K
"... I am blind. So I realized that I was focusing on my breathing and keeping myself calm and centered with the chaos of all of the 200+ children and families swirling around me. It might have been a very stressful and anxiety-inducing situation. Finding my center and focusing on my breathing helps me keep calm. I find I use yoga all the time. Especially before procedures …"
"My husband is on CPP disability (BC). He was denied the first time. [But] We got help through community services, they were amazing and free. We should have gone there first but didn't know…"
"Yes it takes its toll but I don’t let it bother me anymore nothing I can do about it just live life and enjoy my new grand-daughter on the way ... so busy helping new mom to be"
“In addition to the careful preparation my doctors and I went through… I trained myself for this even as if I were training for a sports event. I made sure my body was healthy and strong… and that my mind was strong as well..."
"I participate in the VHL [Alliance’s] Patient/Caregiver discussion call… I met a new friend through these calls… I decided that I would like to meet and visit her in person. After all, from our conversations, it always seems like we have the same outlook on life and VHL… What a day we had! We talked nonstop... "
"When I go to the hospital with [my son], I try to make it like a journée privilège. We bring a lunch and make a picnic with some food that he likes. I take time with him and we play together with special toys that we never [usually] play or we read new books... Yes I try to make a special day... He feels lucky to be alone with mom"
"Honestly tests don't bother me that much! I'm only really sensitive about my eye appointments… I usually go to all of my tests alone but family comes with me for results. Family is a huge thing with me for dealing with stress… Talking about any worries with them relieves my stress for sure. Maybe it ls just sharing some of my struggles takes the wake off. I also talk to my dogs haha it weird but you know they will always listen! I also love the gym…"
Share feedback and stories by replying to this email or commenting on the blog page. What do you do?
I know I have kidney cancer – the renal cell carcinoma because of my VHL Syndrome. But I still had questions, so I started with searching Kidney Cancer Canada:
Kidney cancer is a term that encompasses many different types of cancer that may arise in the kidney. The kind of kidney cancer that you may have depends on which cells of the kidney became abnormal or cancerous. The best treatment is based upon the type of kidney cancer you have and its size. In very rare cases, kidney cancer may be related to a hereditary disorder such as VHL Syndrome
I've been kinda obsessed with this one aspect of my VHL lately because of my upcoming surgery to remove the last of my kidneys (and I guess the cancer, too). I've always wondered and asked my surgeon about all the recurring cancer in my kidneys (for 24 years). I also googled this article:
Expert Stresses Significance of Genetic Differences in Kidney Cancer May 2017- Interview with W. Marston Linehan, MD
When we started looking at kidney cancer in the 1980s… We studied [VHL] patients and these families — these very brave people — and we managed them, learned how to treat them surgically and learned how to do active surveillance…
Comment please on the BLOG page or just in a reply.
I'm re-reading (and re-sending) these quotes for a little inspiration. Do you identify with any of these or have your own words of wisdom? - Henry
From patients/peers across Canada:
Yes it takes its toll but I don’t let it bother me anymore nothing I can do about it just live life and enjoy my new grand-daughter on the way ... so busy helping new mom to beWhen I go to the hospital with [my son], I try to make it like a "journée privilège". We bring a lunch and make a picnic with some food that he likes. I take time with him and we play together with special toys that we never [usually] play or we read new books... Yes I try to make a special day... He feels lucky to be alone with mom
Well we live 2.5 hours away from her doctors so if her [daughter’s] appointments are in the morning we usually stay at a hotel with a pool and find other fun stuff to do...
Honestly tests don't bother me that much! I'm only really sensitive about my eye appointments… I usually go to all of my tests alone but family comes with me for results. Family is a huge thing with me for dealing with stress… Talking about any worries with them relieves my stress for sure. Maybe it ls just sharing some of my struggles takes the wake off. I also talk to my dogs haha it weird but you know they will always listen! I also love the gym…
Self-efficacy in children - the essential building block of resilience (Tip sheet)
from HeretoHelp - a project of the BC Partners for Mental Health and Substance Use Information.
Funding is from BC Mental Health and Substance Use Services, an agency of the Provincial Health Services Authority. Additional support comes from from the Ministry of Children and Family Development and corporate sponsors.
I’m very grateful for my opportunity as a peer volunteer to chat online, with several VHL peers all across Canada. For example, I'm becoming a little more aware of how many VHL warriors deal with the additional challenges of family planning and pregnancy.
" As someone who has endured 2 abdominal surgeries & a brain surgery, I truly thought a c section would be simple (wrong wrong wrong). I had a planned c section under general anaesthesia, besides the actual surgery and recovery- the hours away from my baby after she was born are moments that Ill never get back and moments that I think about often. Not hearing her first cry, not holding her when she was born, not getting that first moment with my baby and my husband. However, I am grateful for a different moment, one that was beautiful in its own, one that allowed me to safely bring my baby girl in this world…
Power to all the mamas out there, no matter how your baby was born- you are a superhero!"
-Sarah from Montréal