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  1. Going through chemo I haven't minded too much the physical changes happening. Well showering when my hair was falling out was a nightmare - very fine hairs that I could feel but not get off. How others are reacting is getting to me. At work I've had to report two cancer survivors to administration. Both tried to offer me support, before I had announced my cancer. One chose to discuss it in the public bathroom where students were present. The other thought it was a great idea to tell me her horrible experience with the IV port on the day I was getting the port, then the day before my first infusion with it. There are also all the people wanting to pat me somewhere. I understand the need to touch. But chemo doesn't just kill cancer and hair follicles. It also kills bone marrow cells, the ones making blood cells. So chemo patients get sick and bruise easily. Now I have complete strangers wanting to give me blessed or annointed religious objects, while I'm on my cell phone.
  2. Twas the night before cancer surgery, when all through the house Not a creature was stirring, not even the mouse We don’t have cats to catch the mouse, thank you very much. When you have dogs, who see cats as vermin to be kept out of the house, our yard, the neighbors’ yards, and everywhere else that is within their field of view, you learn to live without cats no matter how cute they naturally are. The dogs don’t like any kind of vermin, especially the squirrels who think being chased by a dog is a game that they’re especially good at. Dog on ground, squirrel in trees. First this one, then the next. Resting on a limb in full view of a dog will totally drive said dog nuts. This is especially true with Sara our five-year-old German Shepherd Dog. You have to say it’s a dog, so that no one will confuse the dog with a German shepherd with a flock of fleecy beasties. Okay, back to the cancer surgery on September 21. In my situation, the surgeons (Resident and Attending) performed a TURBT (transurethral resection of bladder tumor) looking for the medium size tumor sticking out toward the middle of my bladder. This was done under anesthesia because to get into the bladder with all their surgical tools, they have to dilate the urethra to very uncomfortable dimensions. Post surgery, the Resident informs me they removed the tumor, a bunch of smaller tumors that resembled sea anemones, and pebbly tissue that is similar to beach sand. That basically removes a bunch of material from the surface lining of the bladder down through connective tissue into the muscle layer to see how deep the cancer went. The Resident said they believed they removed all of the cancer, but they won’t know until the pathology report is issued. Then she said that they were going to let the bladder heal for four to six weeks, and then go back in to remove the tissue again to be certain they got all of the cancer the first time. An added benefit of the surgery was the placement of a Foley catheter. It has an inflated balloon that prevents it from sliding out on its own. On September 25, to have the catheter removed and have a pee test to determine if I could do that on my own. Unfortunately, the intake nurse checked my vitals and my blood pressure (which is controlled with a number of drugs intentionally or as a side effect) was 61 over 40. She sent me to Emergency to get that cleared up. Needless to say, I kept the catheter for another day or so. An outcome of the Emergency was the elimination of two of my BP meds. The pathology report came out on the 25th, but it was not available online until the 27th. The result was: invasive papillary urothelial carcinoma, high grade; and muscularis propria (muscle layer) present and not involved, which I think is a good thing. So, I have an invasive carcinoma that is bad. High grade in pathology terms is not good. A high grade in most situations is a good thing, but with carcinomas it’s a very bad thing. I had the catheter removed on the 29th and just passed the pee test, so I didn’t have to go home with another Foley catheter. I did have to monitor my urine output, or lack thereof, which would’ve meant going to the local ER to have another catheter. I made it through the night with continued urine output. Now, I’m back on a liter or two of fluid intake to flush the blood out of my bladder to prevent clots, which might block the channel and having to get a new catheter. The worst problem of having cancer is the lack of knowing what comes after the next step. VA doctors commonly don’t let you in on what comes next with your case. Worst case scenario: removal of the bladder (cystectomy) and having the ureters from the kidneys connected to an artificial bladder made from a piece of the small intestine and being fitted with catheters. Worse than that is routing the ureters into the bowel. With all the bacteria in the bowel that might get up into the kidneys, refusing to do that and just let the cancer do its worst, and become another statistic of not living to the magical 5-year survival goal is an option I’m not ready to consider. Even worse than not doing a removal is the real chance of the cancer coming back, which cancer of the bladder has a real reputation of occurring. I suppose being given a tentative end to this life is a real slap in the face. There were lots of things I had planned to do in the years to come. Now, I’m being forced to think about what I should be doing before being given the notice to vacate this body and go wherever it is my spirit desires. I’ve done all the required religiosity within the Protestant canon, but there’s not much comfort when only an actual miracle is the only answer. Unfortunately, miracles are for those who need a wake-up call, not for those who’ve been baptized twice, read the Book cover-to-cover five times in three different versions, and professed belief in the required Deity.
  3. My grandfather, after whom partially named, died of lung cancer before three years before my birth. My grandmother, who I vaguely remember, died of ovarian cancer when I was six. My father died of metastasized prostate cancer unusually at 52. He hid it from my mother by calling it hip cancer. It didn’t help that he was a five o’clock alcoholic. My mother died of recurrent breast cancer that in the nearly fifteen years between the initial case and the last when it had metastasized to her abdominal wall, spinal cord, brain, and lymph system. It might have helped if she wasn’t such a boozer. Finally, cancer has made its appearance in my urinary bladder. I’m over 55, male, smoked cigarettes, and at the end of a chain of ancestors who died of bladder cancer. The fact that I drank alcohol for more than 50 years probably doesn’t help. Around the end of May, I began seeing blood in my urine. Since I had this previously on two occasions and no one seemed super concerned at the time, I tried ignoring it this time. I “knew” that an appointment with Urology at the Seattle VA Med Cent was in the offing. Then I would get a cystoscopic exam of my bladder. Like a colonoscopy, except the fiber-optic instrument is smaller, you’re awake, and you get to watch. You also get to take pictures home to show the family. Nothing would be found, and I’d be on my way. This time the urine went from orange to a deep red. Then it was almost normal, except being cloudy. Then it was back to deep red with no recognizable pattern. In early June, I had a video appointment with my primary care physician where discussed the blood in my urine. She ordered a urine test that came back positive for red and white blood cells. She ordered another one. That one also came back positive. The next one followed suit, but she didn’t order another. She had put in a referral to Urology at the VA Medical Center, probably figured they’d order more urine tests. This time around I was given a CT scan of my urinary tract from inlet to exit. My kidneys were clear, as were the ureters. The bladder was something else entirely. Seems CT scans with contrast aren’t the best for imaging for bladder cancer, hence the need for a cystoscopy. On August 9, I had an appointment with an ARNP in Urology to discuss what could be causing the blood. He gave me the traditional, “I’m scheduling you for a cystoscopy to look inside your bladder. Now, cystoscopies use a tool like this.” As he held up a show-and-tell copy of the instrument to be used on my lower urinary tract. I nodded by head at the appropriate moments and said “uh, huh, I see,” where required. I’d seen the presentation before, but did my part in the whole undertaking. A month later, I walked into the Cystoscopy Lab at the Medical Center. Since the Seattle VA Medical Center is a teaching hospital associated with the University of Washington School of Medicine (Strangely, not named the Punch & Judy Attaboy School of Medicine or after any of the billionaires who live in the Seattle metro area who seem to have other things to do with their money.), the young man (not cute, so no daydreaming there) who welcomed me had an ID badge hanging from his lanyard that said at the bottom: MEDICAL STUDENT. He gave me a repeat of what to expect and had me electronically sign consent for the procedure. I pulled my t-shirt up and pushed my pants, underwear, and compression stockings down. I sat down on the table, scooted into position, and laid down. I was as ready as could be. The Resident gave me another repeat of what was going to happen. The show began with the Resident telling the student to fill my urethra with anesthetic gel. The way she said that gave me the impression he hadn’t been paying attention during exams of earlier patients. Once that was finished, she told him to take the cystoscope from the nurse who was holding it out to him. Detailed instructions followed as he inserted the instrument into my penis. She gave him encouragement, which was repeated by two of the nurses. If this was to be a solo flight for him, I would’ve been more nervous. The scope entered my bladder, and the Resident requested irrigation. The picture cleared and there on one of the walls stood medium sized (doctor talk) tumor sticking out. The Resident said, “You better let me have the scope.” At least, now, I knew where all the blood was coming from. The Resident started taking pictures of that tumor, a plethora of little (doctor talk) tumors, and a pebbly surface on the bladder’s dome. Post procedure, the Resident tried to be upbeat, but she had to admit my bladder was in sorry shape. The key thing, though, is a repeat of this cystoscopy under anesthesia to remove all the suspected cancer. That will be sent down to Pathology where, hopefully, a definitive diagnosis can be made. There are a number of cancers that can affect the bladder. Where the cancer is located also matters. The lining is best. The connective tissue is second best. The muscles move the indicator toward negative the deeper you go. The outer fat layer is very bad.
  4. I tend to take to the blogs section to whinge, so here goes. I have been living with cancer for almost four years now (well, four years since diagnosis, but it was obviously invading various parts of my body before then.) Long story short - diagnosed stage 4 December 24th 2018. Great Christmas present. Treatment (chemo and radiotherapy) started early in 2019, knocked me for 6 and the spinal damage left me unable to walk more than a few paces and having to use the kind of gadgets normally reserved for the very elderly - things to pull of your socks, jar openers and grabbers to pick up stuff from the floor. Various drugs have kept me fairly healthy since then and it was during my rehabilitation I decided that as my life was likely to be considerably shorter than the average, I should avoid stuff I found boring and concentrate on what I love doing. Besides, when you can't walk too well, sitting in front of a keyboard has its advantages. I began writing my Dragonriders of Pern fan fiction early in 2020 and considered I had enough material to begin posting online around June. Since then, it's been like a roller coaster. If only I could have been so prolific before I got ill. But I wouldn't. There were always other things to do. The motivation of posting a weekly chapter and responding to reader's comments is as good as completing a really satisfying scene. Becoming a Promising Author on GA was like winning an award. I have loads of ideas about things I want to write. Trouble is, I don't think I'll have the time. Lately, I've been deteriorating again. My liver lesions are stable with the tablet chemo I'm on, but it's my spine that's causing a lot of problems. Earlier in the year my left hand index finger and middle finger went numb as a result of nerves being pinched, or abraded by the bony growths. Now it's spread to the right side and I'm also experiencing balance issues and trouble walking again. My grip and arm strength is so weak, the doctor advised me yesterday I should stop driving for safety reasons. Most of this has happened frighteningly fast. I'm trying to finish my anthology story, even though I can't type as fast as I used to. I'm almost through the last chapter of 'To the Weyr' and I'd love to write the sequel but I'm frightened I won't be able to finish it. Pain makes it hard to concentrate on writing, as does fatigue and some medication side effects. I hope I'll be around to do everything I want to do, but at the moment, I can't be sure. Whinge over. PS - The phrase 'living with cancer' always makes me think of living with a very inconsiderate flat mate, who uses up all the milk in the fridge, never empties the rubbish and trashes the loo.
  5. While i've not gotten Covid, it did a number on me and lots of others, too, i know. This week i managed to write and post a poem, the first in what 2 years? I am so very nearly finished with Kidnapped (working title) ... i have edited the first 6 chapters and finishing writing chapter 20. I will finish it. i was inspired to after events in the last week. my FiL has cancer he's been fighting it for over a year now, and on Saturday, my MiL called and said that he'd like to see everyone. So, we all went down to the Toronto Western, where he has been for the past 8 weeks. There's been just so much ... small strokes, catheters, chemo, rehab, a lot of discomfort and pain and so much more. My MiL spends each day there at the hospital. Often from 9 am to 11 pm, comforting and helping him. Due to Covid we cannot visit his room. But he has a super wheelchair, and he came down to the very big lobby/food court. I'd seen him last at Christmas time. He was thin, but on Sunday, he was not the same man. Skeletal is the best word i can think of. He barely knew us but would brighten now and again. He's on a lot of medication. i watched my MiL roll him in and my heart just broke. This profound sadness washed over me and i couldn't see how he'd come back from this. They cannot give him more chemo and he's in no way healthy enough for rehab. They are looking for a hospice that is pet friendly so his sweet cat can visit. He wants to go home or at least get out of the hospital so he can see her. Why am i telling you all of this? i realized that life is so fleeting. My attempts to end my own wasn't enough to show me that. i decided that i need to make changes. i need to finish things that are important to me. i need to stop worrying about things that i cannot change; that are not my a fault. I need to work less, which is going to happen, in the next 6 months or less, i hope. .. NO! i don't hope.. it's going to happen. i will either work part time or not at all. I'm a good writer ... i have 3 good stories that are nearly done and I'm going to finish them. Here's a small scene from chapter 6 of Kidnapped: Thanks for reading. Now get out there and live. xo
  6. Steve Jobs died in 2011 of a type of pancreatic cancer - in medical terms a neuroendocrine tumour [NET] in the pancreas. NETs can occur in all sorts of places in the body. Last year I read about a writer, Alexander Masters, who was trying to get Apple to support a new treatment that might have been able to save Steve Jobs. A guy in Sweden - Professor Magnus Essand - and his weightlifting assistant had done promising work on a virus, and tests they conducted showed this could "eat" NETs and offered the prospect of a cure. Apparently it's been known since the 19th century that viruses can destroy cancer cells and this was what Prof Essand was hoping to do but his tests were only in animals, he had no money and there was no commercial interest in backing the £2m clinical trial. So the virus he created was just sitting in the back of his fridge since 2010. This seemed a real shame. I've just caught up on a more hopeful article last month by Alexander Masters, this time in The Guardian, about the Swedish duo's persistence and inventiveness with crowdfunding and their plan to sell the name of the virus to anyone donating £1m. If this virus can be made to work, that person's name will live on, along with all those who might be cured. http://www.telegraph.co.uk/health/healthnews/9512505/Author-appeals-to-Apple-to-fund-cancer-hope-that-could-have-saved-Steve-Jobs.html http://www.telegraph.co.uk/health/9544400/Would-I-takean-untested-cancer-treatment-myself-Hellyes.html http://www.guardian.co.uk/commentisfree/2013/jan/04/2013-new-approach-fighting-cancer
  7. I know there is always a new promise for finding a cure for cancer or other killing diseases, but seldom have I seen a promise to possible stop and cure both cancer and HIV. Also other diseases like Zika too. I appears this university PhD student in Canada in working with university and government labs, has possibly done that. Stopping the disease from the molecular DNA level preventing it from metastasizing and spreading. I really hope this isn't another false hope. The one thing that is heartening is the research is being done on the academic, government level and not through private industry. Conspiracy theorists might not be able to win this one
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