Getting my head around the whole PCa ... - Advanced Prostate...

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Getting my head around the whole PCa thing

Doseydoe profile image
13 Replies

Morning everyone, it's 2 am and I can't sleep. The whole PC thing is swerling around in my mind and I am glad I have this outlet to make sense of the effect its having on my life.

Looking back, 3 months ago I was living in a different world. I was looking forward to a couple more years of work, then my wife and I would begin ticking off the bucket list. However, now I am consumed with dealing with doctors, nurses and admin staff. Most of whom are amazing and I often wonder how they cope, dealing with cancer issues day in and day out. Also, I work in a large organisation and as I'm in the middle of Chemo, people have begun to ask if I'm raising money for charity. So the light hearted joke in the lift becomes awkward as I try to explain. They feel embarrassed and I feel bad for some reason. So I thought I'd just put it out there, like comming out so to speak. I asked the CEO to brief the Directors on my Dx and ask them to let their staff know. My team all know and I'm happy to chat to anyone about PCa, I just didn't want anymore awkward lift moments. Anyway it's done now.

So, the bucket list will have to wait while I fight to try and get my PCa under some sort of control. I am resigned to the fact that PCa is now a part of my life and that I may not have as much time as I thought to tick things off the list. So I think I'll make a F#@k it list. Like, work till I'm 60, cos I like going to work.....hmmm F#@k it!

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Doseydoe
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13 Replies
AlanMeyer profile image
AlanMeyer

For what it's worth, I think you're doing exactly the right thing by being open to friends and co-workers about your diagnosis and treatment. It's natural for people to be embarrassed and not know what to say to you. I remember many years ago, before I was diagnosed with PCa, shying away from a colleague who had been diagnosed with colon cancer. I was embarrassed. I didn't know what to say to him. I didn't know whether I should ask how he was doing, should express sympathy, should just talk to him as if nothing were happening to him, or what. When I was diagnosed myself, I realized that people were going to shy away from me and so I was open to everyone. I told my colleagues and friends that I had prostate cancer, I made jokes and laughed at any jokes they made in return. I was glad to be able to remain their friend and glad that I could enjoy my life with them.

As far as the sleeping goes - that's a hard one. Have a look at the pinned post Darryl made on "Sleep helpful hints and suggestions." There might be some ideas in there that will help.

I guess there are lucky people who live to be 100 and die in their sleep without ever knowing that they had a problem - but for the rest of us, well, we're not that lucky. Nevertheless, we're still alive and that's a pretty good thing. We could have been killed in a war, or an auto accident, or some other way many years ago but here we are. We might as well go on doing the things we love to do. And when we die there will be billions of other people, some of whom are just like us, who will go on living and working and enjoying life until the next generation and the next after that. The great human experiment ain't over yet. We're part of it and we'll always have been part of it. I believe great things will come of it.

Best of luck.

Alan

tallguy2 profile image
tallguy2

Depending upon how you are feeling through the chemo, you may still be able to do a few bucket list items. It's terrible on days 3-5 after each infusion, I know. But between treatments 5-6 my wife and I did a trip to Ireland and Scotland, with no ill effects! Are you getting the Neulasta device after each infusion? I am convinced this helped prevent infections, etc.

Doseydoe profile image
Doseydoe in reply to tallguy2

Gday, no neulasta for me yet, I guess that's because my blood count is good, cheers 😎 DD

Maleko808 profile image
Maleko808

To say this isnt the most crazy experience one could have is an understatement. I too was looking forward to a nice retirement with a cruise thrown in now and then. But since my dx Ive been rejuvenated about work and leaving the bucket list for later. Having a use by date helped center me. You will find highs and lows along this path. Embrace the highs, forget the lows, and expect the unexpected. I never though I would say this but there are times when I am happy to see my oncologist. Thats the weird thing. Oh, and visit this site often. There are nuggets of outright wisdom here

FightTillTheEnd profile image
FightTillTheEnd

I don't know how old you are now but I'm 43 and on stage 4 PCA.

My wife and I have a f*@k it bucket list for the last 3 years since I've been diagnosed. We do everything we want to do irrespective of where I am in my treatment or chemo cycle. I still work full time and only take a day off for chemo treatment every 3 weeks.

The way I see it, PCA disrupted my life and now it must just work around what I want to do with the rest of my life.

So we try and do international travel about 2 or 3 times a year. And we basically decide we want to do something and we go out and do it. The MO has been instructed (by me) to just keep me in good enough shape so that I can travel as much as I like with as little side effects as possible. So he juices me with Neulasta when needed and I move with my meds for (nausea, inflammation etc.).

Guess the point I'm trying to make is don't make your bucket list wait. Make PCA wait :-)

tallguy2 profile image
tallguy2 in reply to FightTillTheEnd

Excellent attitude and approach to life! My wife and I have decided to make some of my monthly trips for drugs/ consultation into an extended weekend and explore this great country of ours.

2dee profile image
2dee

Find and immediately start attending a local APCa support group.

Ask your Nurse Navigator for recommendations.

Learn there are brothers who were much worse when Dx that have been in treatment for many more many years.

Continue to ask all the questions, get multiple opinions, seek out the experts.

You have more time than you think.

2Dee

roblinic profile image
roblinic

Good morning Doseydoe,

I just wanted to let you know it's still bad but I seem to be recovering faster. Had my treatment friday and I feel pretty good by today wednesday, it used to take until the following friday. I too struggle with living out the unknown. I mean all I ever wanted was to be a grouchy old B@&tard. But I know that is not to be. My wife tells me to be grateful ( grateful for what ). Hang in there DD.

larry_dammit profile image
larry_dammit

Don’t stop planning and living ,but do gather your family and friends close, no one knows how long the fight with this monster will last. Live for the day plan for tomorrow. 🙏🙏🙏🙏

dadzone43 profile image
dadzone43

Yup. I am 76 and like to work also. I have been fortunate in that the PCa thing has reached some sort of stabilization. Cannot say "control" just yet. The bladder is controlled. The PSA is nil. Had my first erection in 15 months last week. Artificially induced but certainly welcome. Continue to work every day. Continue to find methods to keep my spirits up and to keep my mind focused on things other than PCa.

Yes. Friends and colleagues are stymied at the "C" word. At least it is no longer whispered, as it was up until a few years ago. The support group I attend helps a lot with suggestions for coping. And I do not have to ride in a lift; I use the stairs for a double benefit.

Good wishes and good luck.

MateoBeach profile image
MateoBeach

1) Embrace survivorship. Welcome to this "fight club".

2) Do everything you can (with reasonable safety).

3) Say "Yes!" to all opportunities that interest or attract you.

N.B. The above does not apply to most intimate encounters.

j-o-h-n profile image
j-o-h-n

First of all... I guess a lift is what we call an elevator.... You are Giving yourself a lift by saying a Fuck list.... Live your life and go on your Fuck list....Forget about your Pca and laugh your ass off... At 60 years old you've got many many years to live and enjoy life. Don't let Pca beat you... Buy yourself a tee shirt that says "Fuck Cancer" and wear it to special occasions, Weddings, Anniversaries, Parties and etc. Until next time -

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 02/26/2020 5:51 PM EST

Unfortunately, you now have another full time job by managing your disease, finding the right doctors, researching treatment options, attending support groups and asking all the questions you can think of.

This forum is one of many great sources of information.

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