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Hi friends. I have been absent from the site for a little while now. I think the last post update I posted referenced my fathers inability to handle but a 8th of the chemotherapy that they were suggesting to fight off his cancer. On January 3rd we were told that my father’s immune system and kidney’s were to weak to continue with treatment. The Cancer had spread into his pelvis and hips. This was devastating to us all. My father a long time sufferer of diabetes just didn’t have the kidney strength to fend off the side effects of the Chemo Cocktail they had planned for him. At this point we were advised to spend the rest of his days doing the things he loved. Without the side effects of being sick. We all immediately booked an a amazing peaceful winterized cottage in the heart of the Muskoka. We ate, we drinked, we sang, we watched old movies and we content in each others presence enjoyed ourselves. My Father returned to go about his days with a full heart and a desire to be with family with energy and with love. He got up and enjoyed each day, picking his grand kids up from school, attending skating and once even getting out his Harley Davidson Motorcycle during a warm winter day in Port Dover. We laughed, cuddled and were together. On February 12th my Father at the age of 64 passed away peacefully with all of us family around him. Surrounded by his most cherished items, and people including his Bladder Cancer Society Donated Quilt. His kidney’s gave out. He looked not ill but like himself, a burly big viking sort of man. He spoke to all his loved ones and had many visitors at his bedside before going unconscious. His last words were “You’ve got to see this river its soooo beautiful”. I know my father is in the house of the Lord fishing at the side of what can only be an amazing beautiful river. We had a small intimate Christian service before cremation. During this service my self, my Mother and Sister sat with your donated quilt across our laps. We followed the service a week later with a Celebration of Life Event held at a local Theater where all his Art work (my father was a Artist), was on display. Throughout the evening we laughed and hosted over 650 people all wishing to pay respects. We cannot thank you all for being a part of this journey. Especially you Jack. You all have walked with us and sent prayers. I miss him ever so dearly, but I am thankful for my blessings. The time we had, the fact he never got bed ridden sick and the knowledge that he is 100% with God. We have created a Memorial Art Fund for local Norfolk County Youth in his name that we hope will be his legacy. Anyone interested in more info just private message me. Again, Friends Thank you.
The Update:
Well I’m afraid it isn’t good news…..just more news driving us down a path unknown. My fathers results came back and showed that the cancer has spread to three areas of his hip, one of his right ribs and a few Lymph nodes in his chest. Its definitely not the news we were hoping for. So Chemo is the next step. This will be his first time doing chemo. He had the choice of waiting a few weeks, or getting started right away and he chose to meet it head on and start right away. As I type this he is in his first chemo session. (dual medication type). He has also been referred to a pain clinic which we are hoping helps with his itching. They suspect that there are cancer cells left floating around his pelvis from his bladder removal and they have settled causing the itching. I continue to count our blessings and I continue to put my faith in what ever God’s path is for my Dad. His spiritual health is equally if not more important to me at this time then his physical. I pray daily and usually end up crying daily. I’m telling you I really don’t know where I would be without this outlet as well as my faith in the almighty. No point in jumping the gun …..but its hard to not feel like I’m not already grieving. I know not everyone has horrible chemo experiences…..some do fine. I am hoping this is the case. I also hope we can slow this down without my Dad going through daily pain and suffering. I remember my very first phone call to Jack Moon and how lost and upset I was. As I stand facing this emotional roller coaster our family is going on…..I remember his words of advise. So clearly can hear his supportive words. He spoke to me from a Dad’s perspective and that was exactly what I needed. Keep praying for us guys…..I do believe in miracles. 😉 Thanks to all of you!!!!! Val, Kiowa, Greg, GandM, Gord, Jack Moon, Elsie, Stumblegirl14, Rick B, Millize, Cheryl9, Leva and MarySue…..I feel like I have people who have my back!!!! PS My dad is taking his beautiful BCC Quilt with him on his chemo appointments to remind him that you are all there for him!
Hi guys, just checking in and asking for prayers (again)
Dad has if first full followup to his recent cat scan and blood work check up this week. As stated in previous posts he is still dealing with this EXTREME uncomfortable painful itching sensation in his groin area. He has had two trips to the Emergency Room as it was intolerable for him. His sleeping is extremely affected which also means his day is affected with long naps and off schedule eating (definitely not good for his diabetes). We were told back I think in June to come back in September and enjoy your summer. BUT when we returned in September they had no recent CAT scan so had nothing to check. Everything got pushed till this week. Kinda frustrating but none the less, trying to keep positive. My concern remains…..why is this “pain” so severe. They have tried almost every type of pain medication possible (minus medical marijuana), and still the extreme painful itching. I find myself searching Google…..over and over and see no one else speaking of the “pain” being that of a “itching” type. While I don’t mind the trying of different pain medications I would love for the Oncologist to give us some kind of reason as to what is occurring. Its a mystery!!!! We were told his June CAT scan showed nothing that could be treated and were ecstatic…..but at this point my father is loosing hope. Even if a negative CAT scan comes back I’m not sure he will want to fight. The itching is intolerable. He is secluded not leaving the house because of the need to adjust himself constantly and is embarrassed. If he does any activity that vibrates such as lawn mower, motor cycle, even driving in the car…..he has 2-3 days of recovery. It makes him very passive and very quiet and I know he just wants to cry but won’t let me see him. He has yet to see a pain clinic and I have advised him and my Mother of the suggestions as mentioned in previous posts. Fingers crossed this week we can really really hit home to the Doctors that this pain (itching) is intolerable for him. Any helpful words of advise and or Prayers are appreciated. His appointment is Thursday.
Thanks Kiowa….we are unsure at this point if its neurological or nerve damage or a combination of healing and anxiety. My father suffers from Anxiety and it has been elevated since his Cancer diagnosis. The problem is that the internal itching is so severe around his groin area it is keeping him up all night, causing him to rest more in the day, and also causing some social problems as I see him staying home more and not wanting to be around others. I don’t blame him, while he is itching the insides of his groin area (not penis) it still looks socially awkward and embarrassing for him. We currently are seeking a neurologist at the Cancer Clinic to do some investigating into it. But we also will be speaking to his psychologist to see if he needs a higher dosage of anxiety medication. Over all just a tad sad, as it really is effecting his every moment. Send Prayers thanks for the support.
I love waking up only half asleep but consciously recognizing what I am dreaming about…….hate when that split second ends with becoming fully awake. Almost like the dream is drifting away….but you are trying to make it stay. Does that sound right? lol
My brother in law uses 3/4 ground chuck to 1/4 ground pork, adds Worcestershire sauce, garlic, onions, salt, pepper and crispy friend chicken shake and back and its wonderful!
I love this….you guys are great! laughter is the best medicine but only behind friendship. I wish I knew any of you well enough to pick on. I mean I can pick on myself…….lol.
My dad made the choice to have the conduit external bag, because he felt that the nighttime regime was going to be to difficult for him with the internal system. But everyone has to feel comfortable with their own personal decisions. I am sure there are positives and negatives to both systems. Good Luck and God Bless.
Hi guys, long time no talk!!! So here is a update on my Dad. As previously reported he finished his four sessions of radiation on his hip and was sent home to recover and take it easy. He then had a full run down of scans again and nothing new has shown up!!!! They still cannot say for 100% sure that the spot on his hip is actual cancer spread from his pre-bladder removal tumor. However they blasted it just the same to make sure. After his scans showed no new or no spreading growth he was told to go home and enjoy his summer. 😉 This made us all very happy. That was back in June. This coming week he has a new set of scans and a check up the first week of September. Fingers crossed there is no new or spread cancer. I feel like just when we begin to relax we get a new set of tests to send our anxiety spinning again. Overall my dad is feeling good. He has lost a lot of muscle mass and still gets tired having little naps in the afternoon, or heads to bed early. However he is out riding his Harley Davidson and was even seen splitting wood this week. I think the original surgery and infection has set him back strength wise. He has been to emergency twice, with what appears to be urinary type infections. His most common side effect that is driving him bonkers is the itching. He has extreme uncontrollable itching around his groin area. He has had to be prescribed nerve damage pills and sleeping pills in order to get through the day/night. However sometimes he finds he needs to remove himself socially because of the itching. Its not external but internal nerve damage. Has anyone else had this occur? They have put him on Lyrica, but it only has helped maybe 25% with the itching. Any idea’s friends? In the mean time keep us in your prayers as we dive into another round of tests. Peace be with you all.
In our case, our friend JACK suggested getting transferred over to a major cancer medical facility-which was for us Jurvinski in Hamilton. It was 100% the best advice we could have been given. Our urologist in another small town center was just not capable to handle the approach my father needed. Had we stayed the delay in service could have cost him is life. Thank God we took his advice and put our foot down to transfer. The process of diagnosis and scoping and continuous biopsies as well as follow up appointments seem to take so long in these smaller cities. Once we got to a major Cancer Centre the process was much much faster! PS Thanks Mr. Jack Moon. 😉
Welcome….I am happy to see someone new to the site, and someone that speaks so openly about long term post surgery concerns and issues. Thanks Wishing you well.
I agree with all these friends posting. Always get copies of your pathology reports-make a file to take with you to other appointments! Always stop and ask the DR to explain in simple language. If your feeling emotional or overwhelmed. We tend to go home only remembering part of the info or misinterpreting it! Ask lots of questions on the board……lots of people have been through similar type situations. Do NOT GOOGLE!!!! It will only make you go crazy and jump the gun. If you are confused ask ask ask questions. If you want another opinion ask for one. If you want a procedure done somewhere else put your foot down and request it. If you feel like the waiting is to long to handle for a upcoming appointment call daily for cancellations. But remember the Journey is only based on what gear you choose to bring with you! If you feel defeated and out of energy before a appointment then you may not be in the right mind space to hear the positive…and then thus focus on the negative. If you prepare yourself step by step with the cognizant desire to move forward with your heart, mind, soul and body prepared then you will be ready for any results they throw at you. God Bless
Hello Friends! So here is the update. Dad’s VRE infection is finally gone! No more pic lines and daily visits with the nurse. The infections occurred at the time of his bladder and prostrate removal….so we have been dealing with this since Mid December (5months). He did have 4 days of radiation on his hip 4 weeks back, and a current cat scan has been completed that will be reviewed this week. FINGERS CROSSED AND PRAYERS to the Almighty that we are heading towards some good news. There may be a possible need for some preventative chemo, depending on the results. I pray nothing has progressed or gotten worse. He ultimately feels better, has more energy and is more light in spirit. He is joking around more often and spending much more time outdoors now that the weather is nice. He still gets breaks where he needs a quick afternoon nap, but overall we are feeling positive!! So anybody willing to send a prayer of strength and health our way would be appreciated. Not sure if anyone else has every had this but the only side effect he really is struggling with is being itchy. His lower groin area is extremely itchy….(inner type itchy) nothing on the surface….could this be side effects from healing? Any ideas friends? Thanks
HI AZ,
I’m from Norfolk County as well…a country neighbor perhaps. You are not alone. While its my father that is battling Bladder Cancer, I am here looking for info and support for myself and as a voice for him. So yes I think you have found the right place. You will find that the people here are not only helpful but open and give some great ideas. I can speak to infertility as I battle that as well. While your plate may seem full, know that for now you have friends here.
