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I like the sunflower for Greg too. I had the privilege of meeting Greg in Edmonton several years ago and exchanged a few communications, including the gift of his book.
His sunny disposition in the face of every challenge, his spiritual faith, courage and resolve – heads held high reaching for the sun and facing whatever comes (like frost!). He was also a resource to so many — like the sunflower seeds are to the many birds. The list goes on.
MicheleHi Melinda
Wrap the quilt around you and feel our healing thoughts and prayers.
We are with you every step.
MicheleHi Charlene!
Sorry to hear about your diagnosis and so great that you found BCC! By now you’ve probably had your appointment with your urosurgeon and have more detailed information about the different diversions and associated surgical and after care procedures. That said each diversion presents a new set of circumstances that require adjustements to your daily life.It was a difficult decision for me too. I was diagnosed with high grade invasive BC just before Christmas 2011 at the age of 49. I underwent intensive chemotherapy and then an RC March 29, 2012 with creation of a Neo bladder (today is my third year anniversary!). I was leaning towards an indiana pouch (IP) with an ileostomy as my back up plan but after further discussion with my urosurgeon I decided to go with a Neo. I’m very active, fit and body-aware so I felt that it was a better option than the IP for me. The ileostomy remained (and still remains) my back up plan.
Following surgery the greatest challenge was learning how to pee again. The difference is in the sensation – a Neo is made of bowel not muscle so the sensations are different, and the ability to train my urethra. There is a lot of information and experience that I and others can share re: post op care and training for continence. As women we have wider pelvic structures and shorter urethras. I was able to keep my gynecological organs with the exception of my ovaries so I maintained most of the integrity of my pelvic cavity/ligaments.
This is a big surgery so whatever your decision please remember to be patient and kind to yourself. The adjustments post RC will take time no matter what diversion you choose. Know that there is lots of support for you through BCC so just reach out for what you need.
Let me know how else I can help you along the way!
MicheleHi Sophie’s Mom
I know exactly how you feel and I’m happy to help you in any way I can. I was diagnosed with high grade invasive bladder cancer when I was 49. It too was like a blink of an eye and my whole world changed. I’m two and a half years out from my chemo and a radical cystectomy, now cancer free. We have top notch cancer care at the Cross and skilled urologists too. I live just outside of Edmonton and work in the city so let me know if/when you might want to talk.There is lots of support and experience within BCC. Please feel free to lean on us for whatever you need. We are here to help very step of the way!
MicheleI’m proud to say that the woman who created and bravely posted this video is a BC Buddy of mine, Melodie. It is because of her website (http://bladdercancerwarrior.com/) that I was able to find all of you at BCC. She is indeed a heroine for bladder cancer survivorship. She became my virtual coach through my RC and stayed with me through the toughest part of the journey. She lives in Seattle. Another BC angel in our midst!
Cheers!
MI too was a recipient of this special gift. It remains my reading blanket and has taken up permanent residency laying across my favourite chair beside the fireplace.
The BCC angels are always with us!
Cheers!I echo what Greg just said! I’ve been away from this site for many months as I launch back into my life with a vengeance post BC. I attended the session last night in Edmonton so I could personally meet, hug and thank the people who helped me through my journey with BC. Greg, David and Val I can’t thank you enough! Jack — I sent some hugs for you too!
Even though I’m a year and a half out from my treatment (neoadjuvant chemo and RC with Neo), it was still very helpful to once again hear the information about BC — helps to keep putting it in perspective, I continue to learn and now I can actually listen to the words without panic/fear. On top of all that I was even able to meet a new found Neo Buddy right here in the Edmonton area!
It was also important to hear Greg’s amazing words about perspective and the call to action: do even one small thing to help someone else. I remember what it felt like for me when Jack answered my very first email in those early days. Through BCC I’ve had a few opportunities to help others simply by sharing my experience.
Thanks again to you Greg, Val and David for bringing the faces of BCC to Edmonton and for all that you do!
Cheers!I’d like to add – and ask – about one more.
I experience a significant drop in my serum Creatinine levels. Pre-op with my old/sick bladder I was chronically high (due to reflux as a child) and then chemo took a toll on my kidney function for a while. However after RC/Neo I now have high-normal Creatinine levels!! Blood pressure is also notably lower so the ‘resistance’ mechanism of my sick bladder has obviously created a positive environment for my kidneys and circulatory system.
Just another good news piece of the puzzle!
Cheers!Thanks for starting this Greg! I agree this is a good topic and helps to validate the road ahead.
I’ll just add some from my Neo perspective (only 7 months out from RC).
– fatigue. For me probably relates to low hemaglobin post-op. I also had significant bone marrow suppression with chemo (received Neulasta) and hear that some could relate to bowel resection.
– finding the most appropriate incontinence products. My incontinence levels changes significantly over the months. I am fortunate to now be continent during the day and at night (still use a timer and decrease fluid intake after 6 p.m.) but I now have a wonderful collection of incontinence products!
– Infections. I suffered from post op infections x 3 that required hospitalization. For me there was correlation to chronic UTIs with my old bladder and I now continue to take Septra DS every day as prevention (I’ve been doing this for 30+ years so no biggie). It is working!
– mucus. I can’t say I had a large amount but given my early experience with infection my urosurgeon felt that we should do everything we can to minimize the opportunities for bacteria to cling or hang out in my Neo. I was irrigating 2 x /day but now down to once per day with hopes of discontinuing by year end. I see it as rinsing the tank and also gives me a good indicator of residual management (another area of risk for infection). I am also taking Guaifenesin 3 times/day based on research/experience in the US and recommendation from another BC member on BCAN. It is readily available and inexpensive through US Costco (have a friend of mine who sends it to me). Between the Guaif and irrigations I seem to be fine. I may try D-Mannose with CranActin (another recommendation) but will wait to stabilize once I get off irrigations.
– irregular bowel. Like others I have yet to settle out. Several years pre-BC I voluntarily chose to change my diet. I eat gluten-free and dairy-free which I think also has a positive net effect on my mucus issues. I have sensitivities only (not celiac like Greg) but I found that I felt much better from the inside out.
– sexual dysfunction (mostly pain/lubrication). I read with great interest the recent BCAN discussion re: “sex post RC for girls only”. I was very fortunate to have retained my uterus, cervix and vagina (ovaries removed) based on some research coming out of California (where my urosurgeon trained; more healthy female organs being removed with RCs than needed). This has afforded me great pelvic ligament structure and support for my Neo so technically I am intact. However I have the “joy” of surgically induced menopause (I’m 50 yrs old) and now take bio-identical hormones to support changes overall. Fingers crossed on this one!
– finding the right and most cost-effective tools of the trade. Retail medical supplies and continence products are expensive. My health plan only covers catheters not all the related irrigation supplies and continence stuff. I reuse my catheters/irrigation trays and purchase sterile saline to irrigate (even though I have option to make my own saline). Fortunately I found a wonderful medical supply distributor and can buy direct. Bowers Medical Supply out of BC also has offices in AB and ON. The cost is significantly lower!
– mental health. As all can attest to this has been the challenge of a lifetime. I consider myself an emotionally strong person and have the most amazing support from my husband and many friends/family. That said I’ve needed time to process the events over this past year and have sought out psychological support. I’ve also held off going back to work until I feel holistically healthy and ready. I’ve spent time also in making sure I am re-engaging in who/what matters most and letting go of the rest. My longstanding yoga practice has been a lifesaver and I just started taking piano lessons (rekindling a childhood dream).All in all life is really good. Despite the challenges BC has thrown at me, there are many blessings. I continue to learn and look forward to the journey ahead. As my BCAN friend says: “I’m above the grass!” and will celebrate each day. I am also very grateful to have all of you with me and hope to help others along the way!
Cheers!This was a welcomed treat! My husband and I had such a good laugh. It feels good to be able to look back on my journey now and smile.
Thx so much for sharing the fun stuff too!
Bravo everyone! Job well done! I was walking up a trail in northern Saskatchewan with friends on Sunday. We hiked for BC and it was the longest and hardest walk since my journey started just a year ago.
BCC gave me the strength and hope when I didn’t think there was any. So glad and grateful for all and congrats on this incredible achievement! Keep us going Jack!
Cheers Canada!
MI know of what you speak! That same angel sent me a ‘blankie’ that I still use and see every day! It truly is a reminder that we never have to walk this path alone and that we can also shout out some of our great successes and hear the roar of the BCC cheering section!
Cheers to you — and our ‘blankie Angel’!
