Forum Replies Created
-
Posts
-
Hi Bub
Sorry I missed your post earlier. Albertans are fortunate that Albertans have the AB Aids to Living Program to assist with catheters and incontinence suppliers. It is a cost sharing program but seniors can apply to have the cost sharing waived. You can go to their website to find out more.
I do not have an ideal conduit myself so can’t comment further. You may find it helpful to speak directly with someone who is living with this device. You can call the Bladder Cancer Canada office and they will connect you with a peer support person.
I help run the Support Group in Edmonton. Some of our participants found it very reassuring to talk to someone who is experienced with this device before they had their surgery. They have been reassured to learn they can do their previous activities-swimming, golfing, travelling, working, golfing, etc.
Also, they learn tips to mananage in the best possible way.
When you have your surgery, the nurses will be very helpful in teaching you how to care for it and where you get supplies.
Good luck to you. Please post any other questions that come up.
BetteHi Robin
I can’t comment on CIS but wanted to discuss some resources that you might helpful. You had mentioned, in a different post, concerns for your daughter.
My heart goes out to you. This is a common worry for parents when they get a cancer diagnosis. It is even more difficult for a single parent and given your experience with the loss of your daughter’s mother, you are acutely aware how fragile life is.
The Cancer Centres usually have a psychosocial/ spiritual department who help patients navigate a cancer diagnosis. They can help you cope and also offer help on how to talk with your daughter. I believe you are still waiting for your results & treatment plan. You may want to want to wait to talk to your daughter in any depth until you have more definitive info. The professionals can advise you on how best to share your illness with her. Give your local cancer centre a call to see what they have to offer.
There is an excellent book that is available through Chapters. It is called “When a Parent is Sick/Helping Parents Explain Serious Illness to Children” by Joan Hamilton. It explains children’s understanding of cancer at different ages and gives practical advice on what to say.
A cancer diagnosis is pretty scary. For a lot of us, our minds go to the worst case scenario. But the worst may not happen. As you gather info about your diagnosis and have a better idea of the treatment plan, you may find your anxiety is reduced somewhat. The unknown can be really terrifying and the waiting seems endless. Info is power.
Continue to post, ask questions and share your experience. When I was first diagnosed 5 years ago, I found connecting with others who had dealt with bladder cancer was invaluable in helping me believe I could cope too.
Take care.
BetteHi Gloria
You have gotten some good advice already and it appears you are doing everything right to deal with the anxiety. I can remember the terror that would overwhelm me often as I waited for surgery and a definitive diagnosis. I found within myself a strength I didn’t know I had. It also sounds like you have good support.
I am one of the fortunate ones with noninvasive bladder cancer but I can help you connect with an Edmonton volunteer who has had a neobladder for over 4 years. She will be able to answer your questions and is living proof life can be good after Bladder removal.
We have a great bunch of survivors in Edmonton who have walked this journey. We hold a monthly support group. I will private message you with my contact info. Please reply and I will give you more info and arrange for you to talk with the woman with the neo bladder
I look forward to speaking with you.
BetteDear Worried
I am so sorry to read about your dad’s health crisis and your lack of info on his situation. It is hard to know why he is keeping you in the dark. There are any number of possibilities. For example, he may be protecting you, he may not be ready to put into words what is happening, he may just be a private person, he may be afraid of breaking down when he’s always been so strong,etc. I commend you for attempting to have a heart to heart about where you are at with the lack of accurate info. Perhaps if you can respect his wishes now, he will open up in time. That happened with my mom when she was diagnosed with lung cancer. She was the type who didn’t want to know details and didn’t like to express feelings. She was also extremely private. Her cancer situation seemed very serious but my involvement as someone with health care experience made the situation all the more ominous in her opinion. So I bided my time, as hard as that was. She eventually allowed me fulll access to her health care info. I hope your father will let you in, too.
How did I cope with the not knowing for what seemed like an endless amount of time? Venting to close friends and family, facing my greatest fears and entertaining the possibility things could be less serious than I imagined, taking time to nurture myself, praying, playing with my Little friends, ages two and four, who reminded me of the wonders of life, facing my anger and hurt at being kept out of the loop, working out regularly to move some of those strong feelings, journaling, etc. I sometimes could only take it an hour at a time, sometimes a day at a time. Whenever I had contact with my mom, I reminded myself to be a loving presence & let her set the agenda.
I admit freely I was no saint and there were times I had to grit my teeth or excuse myself so I wouldn’t say or do something I would regret. I did, let her know in a nonconfrontational way that I was worried sick but would respect whatever way she chose to deal with the situation. I also let her know how much I loved her.
I hope you have people you can get support from. Perhaps you would benefit from talking to a professional. Mary Sue has some very good suggestions of people at the hospital to talk to.
Also we have a support group in Edmonton that meets monthly. It’s for people with bladder cancer and/or their loved ones. The next meeting is on Jan 24th at 7 pm. We will be meeting at the new Wellspring Centre, 11306-65 Ave, just north of the School for the Deaf. The group is lead by a team of volunteer bladder cancer survivors. We learn from one another. I wish there had been a group like that when I was diagnosed almost 5 years ago. It is our goal that no one feel alone in this disease.
If you would like more information on the group or just talk please private message me and I can give you my phone number. We’re almost neighbours.
Take care
BetteHi Gord
Just wanted to let you know you are not alone. We have an excellent bunch of volunteers in Edmonton who have experience with what you’re going through. If you private message me with contact info, I can have a volunteer contact you. We started a support group a few years ago & have been supporting one another ever since. We have people with the different bladder diversions you could talk to.
Take care
BetteHi Barb from a few kilometers south of Edmonton.
Sorry you have to be part of the group no one would willingly join. I can tell you, however, that you’ve turned to a fantastic group. A few of us
survivors in the Edmonton area started a committee a couple of years back to support others dealing with Bladder Cancer & to raise awareness
about this disease.
We run a monthly support group & host the Awareness Walk in Sept. On our small volunteer committee we have members who have had bladder
Diversion surgery (both men & women), some who have gone the BCG route, and some who just need regular monitoring. We have experienced
the myriad of emotions that accompany this diagnosis & are living proof life can be good post diagnosis. Newly diagnosed people have told us
it’s so reassuring to talk to someone who’s been through it. We all wish that had been available when we were initially diagnosed.
So if you’d like to talk to someone or want info about our support group, please private message me.
BetteA big welcome to you. Sounds like you can teach us a lot about dealing with a chronic condition. Sorry you had to face bladder cancer as well. But as you said, it’s treatable.
We have a great bunch of bladder cancer survivors in Edmonton who are committed to making a difference by raising awareness about Bladder Cancer, holding a support group & fundraising to support research & Bladder Cancer Canada. Our support group is held in the evening on the fourth Tuesday of the month. There is a wealth of experience in that room. If you’d like info about the group or volunteer committee, please don’t hesitate to contact me.
BetteHi Melinda
I was so sorry to read your news. I can’t begin to know what you are feeling. You & your family continue to be in my thoughts & prayers.
My mother was the first in her family & circle of friends to be given a terminal cancer diagnosis. Everyone else close who predeceased her had died suddenly & unexpectedly. She expressed gratitude for the opportunity to say her goodbyes. She was able to mend some relationships, share words of wisdom & make preparations. She felt in control. She believed nothing important was left unsaid or not tended to. She was an inspiration to those left behind.
My hope for you is support, comfort & peace. And the best treatment option available.
BetteHi Melinda
How frustrating your test was delayed. I have my fingers crossed as you wait for results.
May your quilt be a symbol of the love & support that surrounds you. You continue to be in my thoughts & prayers.
BetteHi Tanya
I can sure relate to the trepidation pre-cysto. To normalize my reaction I remind myself of friends who are many years post Ca diagnosis who still get a little worried prior to their annual checkups. I wish I had inherited my elder brother’s personality. He is a prostate cancer survivor & truly never worries about anything. But we are all unique and must learn to manage our individual psychological traits.
Your upbeat approach to life is so refreshing & inspiring.
I have my fingers crossed for an “all clear” for you on the 31st. Also wishing you much success with your Walk.
BetteHI Melinda
Thanks so much for updating us. My heart goes out to you. Your fears are justified and your reactions are a natural reaction to an abnormal situation. You have shown great courage in sharing with your immediate family & asking for help.
I am not very computer savvy but am going to try to figure out how to send a private message. I’d like to give you my phone number. I am retired so don’t mind late night or middle of the night calls. It sometimes helps to vent with someone outside the situation.
You continue to be in my thoughts & prayers.
BetteDear Melinda
I tried to reply earlier but think I inadvertently deleted my message. So I’ll try again.
I was so sorry to hear about your setback. The uncertainty is so stressful. I am glad you reached out to our community as those fears need to be expressed somewhere. Giving a voice to your feelings gives you a measure of control. It’s a breakthrough, not a breakdown.
I can understand your desire to protect your family, but they may also be terrified & trying to protect you. Putting on a happy face takes a lot of energy for all concerned. Just something to consider. You know what is best for you & your loved ones.
If the worry becomes unbearable, the hospital probably has an on-call chaplain who could come & be with you, even in the middle of the night. They are non-denominational & their job is to offer support during critical times.
Please know you are in my thoughts & prayers. My hope is that you feel supported from sources seen & unseen.
BetteHi RCS,
Congrats on the “all clear”.
My CT scan in May 2012 (following my initial TURBT)showed one small lung nodule (less than 6 mm). They suspected it was scar tissue related to bacterial pneumonia I had as a child but wanted to monitor it. I did have a follow up scan 6 months later & then a year later. Nothing had changed so no further testing was planned. My family doctor told me about a patient of his who had similar scarring show up on an X-ray 40 years previous. It never developed into anything but the nodules were still present.
The knowledge I had a nodule was disconcerting initially. I have now come to realize that the tests associated with a Cancer diagnosis may show all kinds of irregularities/abnormalities. I figure our bodies have done a “lot of living” & show “wear & tear”.
Good luck to you
BetteHi Sophie’s Mom
I am so sorry you are facing this health challenge. I remember those early days 2 1/2 years ago after learning I had a tumor when terror was my constant companion. Initially I couldn’t even bring myself to say the word Cancer. The waiting seems interminable and then things seem to be happening way too quickly. There are a myriad of emotions that need to be heard. Each of us find a way to get through this journey and you will, too. By reaching out on this site, you are accessing support from others who have walked in your shoes. It is a lonely journey as Val said, but you don’t have to walk it alone. There is support here in Edmonton. Unfortunately our Wellspring isn’t completed yet but we are offering a Bladder Cancer Support Group monthly at the Canadian Cancer Society Office. It’s a chance to talk with others who have firsthand knowledge of what you’re facing. The next meeting is Oct 28th @ 7 pm. If you’d like one-on-one connection, there are people like Michele you can speak to. I know for myself it was so reassuring to learn about a female bladder cancer survivor who was leading an active life. I was desperate for info but scared myself with info I found on the Internet. So heed Rick’s caution. The BCAN pamphlet “Bladder Cancer Basics for the Newly Diagnosed” that you can download from the “Facing Bladder Cancer” tab at the top of the page is an excellent resource.
Know we are only a phone call or post away. Take care.
Bette
