Homepage – Forum › Forums › Muscle Invasive Bladder Cancer › So many phases….
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stumblegirl14.
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June 9, 2013 at 1:35 pm #7826
Ieva
ParticipantAcute:
The diagnosis is given. Treatment options discussed. Treatment done. Emotionally living in a state of shock.Transition:
Managing assessments. Repeat tests and procedures. Life revolves around the schedule.
Emotionally living with fear.Chronic:
Discovering all the ways that life has changed, or is different. Adapting to the changes, new ways.
Emotionally grieving for what has been lost. Grateful to have the chance to continue to live.Anyone else having similar experiences?
June 9, 2013 at 2:42 pm #15637KIOWA
ParticipantYeah, all the time. I put my BC in a bowl. Stir in my Asthma, add the chronic pain, throw in the MS, add a fair amount of allergies then fold in my colonoscopies check ups from my colon cancer, and carefully blend in my seizure disorder. I put it in the fridge then go the gun range and play, then hand out with some goofy friends and drink some tequila, play with my dogs, work with the PD when I can, continue to do Search and Rescue when able and then then forget the mixture in the fridge and throw it out when it gets moldy. That reminds me, I think I have a 6 month cysto this month. Well, I’ll put that in the bowl too.
Kiowa
June 9, 2013 at 3:07 pm #15640Ieva
ParticipantHow I handle my health (or lack of it) is quite similar: I cook up a storm, fill up the calendar with events, play on line scrabble, practice bridge. As a caregiver, I follow the lead of my partner…and how he is.
June 10, 2013 at 10:40 pm #15648marysue
ParticipantAny kind of cancer journey bring shock, denial, anger, depression etc. etc. The changes and acceptance of are tough to handle sometimes as is the routine of checkups, tests now necessary as followup.
I experienced all of this especially the first time around since I didn’t know what I was dealing with. I found as I gained knowledge and experience the stress lessened somewhat. Life is different today no doubt about it. I wouldn’t be where I am today if I hadn’t had bladder cancer. That being said I wish that I could have learned what I did another way.
Becoming a learner/seeker helped me reframe and see myself as a victor not as a victim of the disease.
June 11, 2013 at 2:10 pm #15651Anonymous
InactiveI think the diagnosis is handled very differently for the patient and the caregiver in some ways.
In our case, Mike took his diagnosis and faced it head on with the “I am going to beat this” attitude. I, as his wife, took on the Florence Nightingale role as I like to call it. I researched, I talked to others, I joined BCC, I make sure he is taking all his meds, I make up lists for doctors, I become friends with the doctors’ assistants. It all makes it feel like I am doing something to help.
As I have often said to Mike, we, as family can empathize, sympathize, etc…but we are not the ones who have been given the diagnosis. So, even though we are impacted by it, I don’t think we ever really know how it FEELS to be told you have cancer.
Now, we are at a totally different phase. We are both struggling to actually understand that his recurrence is terminal and that is a whole other ball game. The feelings that come along with this one are much more intense. The anger is there, the questioning of why we went through a whole year after his RC to only be seemingly worse off. He is in pain which makes it unbearable for him to take and just as unbearable for me to watch. Nothing is as it was and the frustration is wearing us both down. I feel for anyone who doesn’t have someone special in their lives. We love each other and we are finding it tough, I can’t imagine what it must be like for anyone alone through this.
Monique
June 11, 2013 at 9:58 pm #15656Ieva
ParticipantMonique,
Thank you for sharing the very tough place you and Mike are experiencing. You make great points, differentiating reactions experienced by the caregiver and the person diagnosed.
Also, thank you for adding to the phases – others on this site are experiencing the same phase as you and Mike.Ieva
June 13, 2013 at 2:09 pm #15658KIOWA
ParticipantActually the word “phase” is a very appropriate one since a phase is always time limited. that’s the nature of phases. So since it is a phase you both will go through this phase and onto the next phase of healing and and you will do it with greater love and understanding and all will be well. Nevertheless, this phase you are in is not to be minimized, it is very very difficult. Both of you are always in my prayers every day. I wish you the best of everything and I am confident that you and Mike will get through this tough time and eventually get to a point where we can have big party (bash) at your house. The day is near! think Greg should come? Nah, he’s too goofy.
Ki
June 13, 2013 at 10:31 pm #15670Anonymous
InactiveThis is definitely a “limited time offer” but I say yes to the bash being at our place. We are right across the border from NY Kiowa so you could drive up from Texas and pick up all the rest of the US gang. What do you think? As for Greg being invited, well, I gotta say yes to that too. He has taken all of my phone calls and emails even when talking about poop….now how many guys will talk to a girl they’ve never met about poop. LOL!
You are right, we will get through this because we have laughter and love which we believe are the two most important things to deal with this. Plus, we have you guys at BCC…what more could we want??? OK, maybe a few more things but this is a good start.
Thanks for thinking of us.
Monique
June 13, 2013 at 10:38 pm #15671KIOWA
ParticipantI’ll talk to you about poop anytime. Of course Greg is especially good at it. It’s in his blood. But I also will talk about farts, now how many guys will do that? If we were all to turn our farts loose….Well that’s for another topic.
Ki
June 14, 2013 at 1:08 pm #15689Anonymous
InactiveMike loves to talk about farts…he even likes to drop a silent one in an elevator occasionally, then turn around, look at everyone with a disgusted look as if to say, who did that?. He then turns, leaves with a smile on his face that no one else can see. I, of course, know the familiar aroma.
June 14, 2013 at 2:40 pm #15695KIOWA
ParticipantWell, Mike and I would get along perfectly. I love elevator farts if they are my own. I wonder if any ever died in an elevator because of an elevator fart. Where do those farts go? How could they be put to good use? Do they affect the vibration of thrust of an elevator? these are all very important questions. Now if one leaves a brown spot, well then everything needs re-evaluation. I hate it when i leave a brown spot, tire mark. Skid mark. Whatever.
Ki
June 19, 2013 at 2:38 am #15741Jeanne
ParticipantWhen I first heard I had cancer , I wrote out a will, a list for hubby to follow taking care of the cats, how to make his favorite foods, on and on. Then I read more, and got madder at my cancer ,mostly worried about how hubby would be without me.
Pretty much the way I felt too, leva But it has been so many years now that it has faded to a whatever happens, happens.
We just do as much as we can to enjoy ourselves. Not easy at times. but glad we were crazy when we were young and healthy.
🙂Jeanne
June 21, 2013 at 11:03 pm #15753Kit
Participantmmm poop and fart, I especially love talking about them when there is not enough food on the table to share and I am hungry! 🙂 🙂 And they are the telltale of one’s health too, all of us should learn about them!
September 17, 2013 at 10:37 pm #16156TnTalways
ParticipantThere was also, at least for us, a trace of a denial phase…this isn’t as serious as it sounds, maybe we are overreacting, maybe there was a misdiagnosis…that sort of thing. It only lasted until the first biopsy results though.
Monique…seriously, that cracked me up! 🙂 Tim used to do the same elevator thing. He and I approached things much like you and Mike…Tim wants to do everything and process everything one day at time, fight it but stay focused and only bite off what needs to be dealt with right now, whereas I am the one doing research, and all those other things you mentioned, right down to creating alliances with admin assistants, etc (i thought I was the only one!) and creating med charts in MS Excel and trying to plan out every stage of his recovery. The challenge with us is that I am on mega-information upload and Tim is on mega-I-don’t-need-to-know that download so it can get frustrating between patient and caregiver.
Kiowa…I am going to have to get Tim to read your posts…you two have similar senses of humour.
September 18, 2013 at 1:06 am #16162KIOWA
ParticipantYeah I figured out Tim was really weird right off. I like weird people and Tim and I have a lot in common in terms of how we process information. But really, we do it the proper way, you take way to long. Bladder cancer? Piece of cake (well I’ve never eaten bladder but I’m sure it’s good) No problem, research, figure it out, do it all in one day and be done with it. Forget the details. I have developed my own approach to BC. I use to do this as a kid. First. inject an accelerate (I used gasoline) into a hole (I made a tunnel in sand, didn’t use my penis), then insert fuse (my uro does that and call it a cysto, I can do that), then ignite the fuse. Then, BC is gone. I have not actually tired this yet bu i don;t see why it wouldn’t work. In fairness though, BC is serious and is difficult and is a major life change. But I have always found humor to work well regardless of the situation. Like when my fuse (not that one) failed to ignite my buried model cars (this as at age 6-7 year, not months). Easy, drop a bomb on it. I did that using my model aircraft. What a waste of plastic though. OMG, I was not eco friendly at the time.
Ki
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