It's been over six weeks since my last post, and no news (from me) is good news. It means that life is adjusted to the new "normal," and that Bladder Cancer is not a daily concern. It is good to be more concerned with work, holidays, family and friends than with health. That said, the new normal includes the looming presence of cancer recurrence and awareness about possible exposures to triggers - especially in food. Even in the holiday season when "cheating" on the diet is more frequent, I still think about exactly what I will allow myself to cheat on. Remembering to faithfully take my vitamins and supplements is also more difficult, and I am thankful that I manage to remember most of the time. I have resumed exercising after 2 months off for BCG and recovery - more time off than was physically necessary, but I had to get mentally prepared to exercise again. And I still don't enjoy it one bit!
I was contacted recently by Ranveig Røtterud, a lady from Norway who has been dealing with Bladder cancer for some time. She has started a blog (entirely in Norwegian) to raise awareness and begin sharing information, which I agree is a bit rare concerning this very personal disorder. Even on the internet where everyone seems to write as if they are invisible and invulnerable! Ranveig has noted the same reluctance for public speech and information sharing in Norway, and is staging a one-person battle to correct that deficiency. Her informative blog is called Den gule bloggen which translates rather delightfully as The Yellow Blog. She has access to some different research than we do, and certainly has a unique and useful spin on bladder cancer. Do be cautious when using the translated version. Google translate does some wonderful work, but frequently you will have to use your imagination and ingenuity to work around it's failures. For instance, I sent her an email in Norwegian that used the abbreviation BC for Bladder Cancer. Ranveig reported that the Norwegian version came across with "Before Christ."I also got a note from Alexandra whose father, Daniel, recently passed away after a 14 year battle with Bladder Cancer. She writes a blog that focuses on dealing with death from a secular viewpoint. Her musings (which are not for the faint of heart) can be found at https://itsnotmorbid.wordpress.com/game-over/.
I also had good news from the folks in my Bladder Cancer "fraternity" that keep in contact. Clear cystoscopies and good news from Ben in Louisiana (Mobile Biohazard Man), HK in Toronto, Ken in Virginia, Sebastian in Buenos Aries, Roy B., and Brian in Atlanta. Robert S. had a scare, but biopsy came back all clear on him as well. Keep up the diet, exercise, and good attitudes for more success in the future.
Wishing all of you a Happy Christmas and New Year in 2012! Enjoy the photo below from a friend in Paris.
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6 comments:
Hi!
Good news again for Jim in Arizona! Over three years cancer free. Goes back for cystoscopy in February but totally expecting the same results. However, we are fully aware this could change at any time - thus the quarterly tests. Hasn't had to have BCG (which totally kicks his butt) in some time now. Pray for continued good results!
Thanks!
Deb (Jim's Wife)
Had a look see at my bladder the day before Thanksgiving plus the accompanying urinalysis. Both were clear and my doctor said since it has been four years,"I'll see you next Thanksgiving and Merry Christmas." So I want pass that on and say Merry Christmas to everyone who may read this site. Steve with his/this blog has been tremendously helpful and a great morale booster. Thanks so very much.
Hi Steve, Best wishes for Christmas and the New Year. Let's hope for a healthy 2012. All the best David
I have been reading your blog and it is refreshing to read words spoken from a point of view of "here it is, take it or leave it", as opposed to some of the forums I have been on where cliques have formed and there is always a sense of one ups-manship taking place.
I had a botched biopsy (5 spots of tissue taken)from a flat lesion near to my right urter that came back from the pathology lab as T1 2-3 TCC with in situ present.
Because in hind-site found out that this Uro was a pretend bladder cancer expert hack caused me 4 weeks of in and out of the ER with problems and utter misery.
Then he basically told me I was going to die. I went to University of MN and was properly squared away,(although the Dr.has bad communication skills) had a TUR of that area/lesion/inflamation(Tumor was unsure) were my number 1 ranked Dr. in America carved out the lesion like he was working the Crazy Horse Monument and the Pathology cam back completely NEG for tumor???? Only (sigh) high grade dysplasia (In Situ)malignant neoplasm (all synonymous) and just recently finished my 6th round of BCG a final FISH and Cysto in 6 weeks.
I find our symptoms very similar and even more interesting I had my left shoulder go nuts in pain on me about 2 months ago (very old injury) after starting to take Miracle Whey..Now I am thinking is there a relationship? Anyway, I too have radically change my diet in certain ways.
No red meat, highly processed food, sugar, fast food and introduced Dynamic Greens from Nutri-Dyn, Pure pharma grade red Reshi mushrooms and portions of low fat, glycemic friendly, often times packaged meals like Lean Quizine or other similar, all the while counting calories.
I have gone from 276lbs down to 238lbs in 3 months and my goal is 200. At 53 I too would like to keep my bladder to the last second and if there is anyway I can help myself I will. Feel free to contact me.
I've had a tumour removed and biopsies and a six week course of BCG. I had no problems with the BCG and no apparent side effects. I finished the course 3weeks ago but now I have a permanent smell that is sickly sweet and only I can smell it. My McMillan nurse said that there is nothing to worry about as it is not the cancer or.the BCG treatment. I am very self conscious about this smell and something is surely causing it. Has anyone else experienced this? It is 24/7 and is literally driving me mad.
B
I had a few odd (and mostly imaginary) effects, and I don't even recall them now. No idea if odor was one of them, but all disappeared in a few weeks.
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