A Much Needed Update

That is a word right out of the past - Love it!

I bet for the most part, many of us here know that your life isn't all bike rides into the sunset. We've followed you like a little brother follows his big brother, and, while we apprciate your positive posts, know in our hearts that life isn't 'hunky dory'. 

With the 'outside world' (as in those who do not have Cancer); I think it is hard to find a balance when it comes to letting them know just how life really is, becasue we know, they just won't understand. 

Sometimes (if not always) it is frustrating when people treat us like there is nothing wrong, or that Cancer has all gone away, when we look pretty darn healthy, but our minds are in a constant flux from wanting to forget the Cancer and not being able to. 

I myself chose not to shy away from telling people that I have Stage IV Cancer. I tell them matter-of-factly, like its no big deal, when obviously it is. Its not that I want sympathy, I want understanding, and sadly, unless someone has struggled with a life threatening disease (of which Cancer is only one), they are not going to truly be able to empathize.

I would say I am positive 90% of the time. Night times are the worst, along with the few weeks leading up to the next set of bloods and scans.

So, dear friend. Please know that I, for one, am happy to read your uplifting, positive posts, but know that your life isn't all beds and roses. I am here for you, to support and to understand. I want to hear about your Harley rides, and I want to hear about your pains. 

Now, as a Podiatric (foot) medical assistant, I want to know why you are not getting your ingrown toenail removed. Its a simple procedure for sure (I bet you've been through worse ).  I know a good Podiatrist who has an EXCELLENT medical assistant. A trip to Reno and a ride out into the rurals, and we'll take care of you. 

Take care, my friend. 

Sue - Trubrit

Hey Phil - thanks for your update and your honesty.  I have no doubt this takes a toll.  We are a bit over three years in and it's a life not many can understand.  And then you feel guilty complaining cuz hey you are still here.  And there are babies and children dying and none of it makes sense.   

Glad you are making progress with a therapist.  Wish my husband would see one.  It's a difficult life to live...but better than the alternative?  

Good luck with the toe nail - strange but my husband is dealing with the same thing.  I wish he'd go to a podiatrist.  He can't cut his toenails so all foot care is on me and I'm not a doctor!

PhillieG said:

Hey Ron

I know you've had a rough time with your journey. There are many nasty side effects that can happen, especially over time. I can't nor would I compare myself to you but I will say that I'm not sure if I could handle all of the things that you've had to deal with. Most likely I'd give it a go but lately I've wondered if I was told tomorrow that I had to go through everything all over again if I would do that. Having kids I probably would, but it certainly wouldn't be easy.

A few years back I was taking about the same dose of oxycontin. It was the time release oxy drug, maybe I have the name wrong. I was able to stop but I was also taking dilaudid at the same time. I found it was nearly impossible to tget the oxy by me because of it's abuse by (mostly) kids over here in the States. It really wasn't doing much to control the pain I still have in my side from my initial surgery. Neither does the dilaudid for that matter. It cracks me up when a doctor asks "How would you rate the pain on a scale of 1-10?". If they asked me 11 years ago I'd probably say 8 or so. After this many years of it I now answer 2-3 but I don't think it's really changed. I've just gotten used to it. It's all a matter of perspective I believe.

You're really an inspiration to me Ron (as are many others).

    Would I like to have lived as long with cancer as you have. I don't think so . My gp recently asked me If I was really having much pain. He was responding to my nephrologists suggestion that wild swings in blood pressure were from pain. He asked me to describe it. I told him that every day when I get home from work I have a nap. When I try to get up I can't walk for a while. He thinks going to a pain mangement pschycologist might help. Whatever doc. I don't think I could have handled the chemo for as long as you have. You seem to have organised your defence against cancer team (sound like Harry Potter) very well and that isn't easy. We have  certainly travelled different paths and you are right there is no comparison between our survival ,yours has been against cancer and mine has been against the long term side effects of treatment but we both stand as living examples of what you need to go through to survive against cancer and I think that is needed on this board. My one regret in life is that I never get to meet you or any of the others that are no longer with us. Best wishes from Downunder Ron.

You go Phil! I am always so happy to hear of someone living with this for long periods. I pray that we'll all be able to say that someday and tell our stories of how we made it and are still around.

Jan

Phil,

Nothing but admiration and respect. 

In some ways, cancer enters our lives and never really exits.

Thank you for sharing wisdom born from years of experience.

CM

I think all of us going through this will never be the same...ever. There is always waiting for "the other shoe to drop" and those damned 5 year survival statistics. Anyone dealing with death like we have cannot be expected to be 100% sunshine and rainbows all the time. I think the trick is to not dwell in those down times and when we're in them try to be emotionally constructive, not destructive. I mean take the time to learn from the fear and sadness, not reach for a bottle or an antidepressant to mask it. And try to grow if possible. Or just cry and let it out. We don't have to be warriors or superheroes, it's fine just being human. Cheers to the breakthroughs you and your therapist are making. Keep up the good work.

Easyflip/Richard

maglets said:

Phil

Phil it is so so wonderful to read your post. It gets a little lonely here sometimes now that we old timers are getting fewer.  I enjoyed reading your thoughts and reflections.  Over the years I have always trusted your steady voice.  Congrats on your survival Phil.....I salute you......

mags

Phil I also should say that your post was very very timely.  I was diagnosed in 05 so I too have been at the Stage 4 cancer game for 10 years.  I try very hard NOT to bore my family with cancer talk but lately I notice anxiety bubbling around in me closer to the surface.  Sleep is a state that I seem to have forgotten how to participate in.....particularly if I have "something to do " the next day.  Anything out of the ordinary seems to throw me for a loop....I envy your having a therapist......does not happen when you live in a small town....someone to talk to would be great.....hence this post.

Not trying to whine.....generally I am happy and hopeful and getting on with life.  But it IS life after cancer life with cancer......all the emotional crap and lots of physical stuff left-over.....

thanks for the chance to hear your point of view......

mags