A Much Needed Update

PhillieG
PhillieG Member Posts: 4,866

I've been on this site for a while. I think that Ron50 might be the record-holder and Jeff isn't too far behind. I know there are some others but I can't recall who at the monent. It's not a contest but more of a sign of hope for newbies and oldbies alike. One can survice colon cancer or in my case, live with it.

I realize that I often paint a pretty picture of "living with cancer" and while I really have no complaints, it's not always as easy as I might make it sound. This isn't going to be a bombshell by any means and it may seem trivial from a medical standpoint...and in reality it is. My recent scan showed that the few lung tumors I have continue to be stable. Certainly good news. The only medical issue I've been dealing with is an infected/ingrown toenail. It's being treated with antibiotics and is responding nicely. I was talking with a buddy of mine the other day and we concluded that when your feet are aokay, you don't even know you have them. But when they hurt, they really hurt!

What I'm finding to be tough is that while I mostly go about things like (what's become) normal, the psychological effects are getting a bit tougher. I go about my day at home and with many people like there's nothing wrong with me at all when in reality, cancer is never far from my thoughts. Being in treatment that long is a unique situation. How to deal with it has become a bit tougher this past year. I'm been making some very good progress with my therapist by setting up some boundaries and tearing some other ones down.

Sometimes I feel that I misrepresent myself by coming off like things are hunky-dorie. It's a tough fight as we all know. I am a firm believer in being positive as much as I can and I always keep in mind that things can be much, much worse than they are...
Thanks to everyone for your continued support of the many years.

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Comments

  • Trubrit
    Trubrit Member Posts: 5,626 Member
    Hunky Dory

    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 image).  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

  • John23
    John23 Member Posts: 2,122
    Hanky Doobie

    Hunko Dribbley

    Too bad about the feet. My Mom always said “if your feet hurt, you hurt all over”. I proved her wrong. If my feet hurt and I don’t go anyplace, they only hurt in the living room, or wherever I am. Silly myths… Just another old waif tail.. My take on the matter? You’re going to be fine as long as you don’t have to call a
    toe truck.

    Honcho Duodenum

  • jen2012
    jen2012 Member Posts: 1,607 Member
    Hey Phil - thanks for your

    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!

  • ron50
    ron50 Member Posts: 1,723
    G'day Phil

        It is always good to see a post or yours. I guess it comes under 'proof of life' .  It does not matter how long we survive we are all going to have our moments be they ingrown toenails ,neuropathy or mets that just will not go away or die. Mine hae been with auto-immuneproblems and all things related. In an attempt to stop my kidneys from crashing they have plied me with all sorts of drugs. Prednisone was the worst and caused type two diabetes, osteo penia and a lot of lower back problems. Pain is a constant companion to many of us . Because of my kidneys (an unknown auto-immune problem that causes the loss of seven grams of protein a day thru my urine). They treat me with XXX immuno suppressants like methotrexate and now cyclosporine. No worries ?  Well keep out of the sun and watch out for skin cancers. I now need six monthly checks. Because of my kidneys I am not allowed any of the normal pain killers so they put me on oxycodone . I have been on 80mg a day for over 18 months. Now they think I have hypo algesia. The oxy is causing more pain than it helps. The result is I have to get off it. No problem ? Well it will take me 32 weeks to get off it. 5 mg a day each fortnight. Then what , well my nephrologist is letting me take a low dose of naprosyn and is checking my kidneys every fortnight to make sure it is not killing me. Like Phil I find it poor value to complain. Why bother.For whatever reason , cancer has chosen not to bother me again for NOW ! I hope to be here in another ten years to respond to Phils latest post. Wishing you all well in your efforts to stay alive ,stay cancer free and to stay as healthy and happy as you possibly can. Good fortune to all...Ron.

  • PhillieG
    PhillieG Member Posts: 4,866
    John23 said:

    Hanky Doobie

    Hunko Dribbley

    Too bad about the feet. My Mom always said “if your feet hurt, you hurt all over”. I proved her wrong. If my feet hurt and I don’t go anyplace, they only hurt in the living room, or wherever I am. Silly myths… Just another old waif tail.. My take on the matter? You’re going to be fine as long as you don’t have to call a
    toe truck.

    Honcho Duodenum

    Swell or Swollen?

    I may need a toe-job Tongue Out

  • PhillieG
    PhillieG Member Posts: 4,866
    Trubrit said:

    Hunky Dory

    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 image).  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

    That's Swell :-)

    I like using phrases from my youth. Jeff is the guy with the Harley rides.
    I have Harley Doles to contend with! He makes cancer seem like the sniffles!

    The antibiotic is helping a lot with my toe. I wanted to go to a podiatrist to have the nail cut back but since I'm on Avastin as well as Xarelto (for a PE from two years ago) my Onc wanted me to see her first. When she saw my toe she felt the antibiotic might do the trick.

    I'm very open with people that I'm not super close to. It dosen't make sense on many levels

  • PhillieG
    PhillieG Member Posts: 4,866
    jen2012 said:

    Hey Phil - thanks for your

    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!

    Hi Jen

    You're so right about it being a life that many can't understand. I really don't know what it's like to have a family member with cancer. I see things from the patient side. I'm sure it's much different looking in.

    I started with a therapist about 4-5 months after my diagnosis. She's been very helpful. I highly recommend it for others. The one thing with that is that it's up to me (or the patient) to bring up issues to address for the most part. I went through a stage where that was tough to do. I'm opening up more lately.

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Hi Phil

    You don't misrepresent yourself, but do give others the opportunity to know that you can live beyond a cancer diagnosis.

    It also shows folks that if you choose to live life to the fullest rather than regret what might have been, there can be a measure of happiness.

    Each of us face the medical portion of this disease in much the same way.  It is the emotional side that is so very personal in how we deal with it.

    Cancer is never far from the surface of our thinking, particularly now with all the advertisements regarding treatment centers and medications.  I know at times I want to scream at the tv when they advertise meds for other ailments and just casually mention that it may cause cancer! I also find it incomprehensible that the FDA would approve a med which can cause a disease for which there is no definitive cure.

    As you can see from the above, I have my own emotional issues with this disease, but then don't we all.

    Keep doing what you are doing Phil.  And how about bringing back the "guitar man" avitar...even if for a little while!

    Hugs,

    Marie who loves kitties

  • PhillieG
    PhillieG Member Posts: 4,866
    ron50 said:

    G'day Phil

        It is always good to see a post or yours. I guess it comes under 'proof of life' .  It does not matter how long we survive we are all going to have our moments be they ingrown toenails ,neuropathy or mets that just will not go away or die. Mine hae been with auto-immuneproblems and all things related. In an attempt to stop my kidneys from crashing they have plied me with all sorts of drugs. Prednisone was the worst and caused type two diabetes, osteo penia and a lot of lower back problems. Pain is a constant companion to many of us . Because of my kidneys (an unknown auto-immune problem that causes the loss of seven grams of protein a day thru my urine). They treat me with XXX immuno suppressants like methotrexate and now cyclosporine. No worries ?  Well keep out of the sun and watch out for skin cancers. I now need six monthly checks. Because of my kidneys I am not allowed any of the normal pain killers so they put me on oxycodone . I have been on 80mg a day for over 18 months. Now they think I have hypo algesia. The oxy is causing more pain than it helps. The result is I have to get off it. No problem ? Well it will take me 32 weeks to get off it. 5 mg a day each fortnight. Then what , well my nephrologist is letting me take a low dose of naprosyn and is checking my kidneys every fortnight to make sure it is not killing me. Like Phil I find it poor value to complain. Why bother.For whatever reason , cancer has chosen not to bother me again for NOW ! I hope to be here in another ten years to respond to Phils latest post. Wishing you all well in your efforts to stay alive ,stay cancer free and to stay as healthy and happy as you possibly can. Good fortune to all...Ron.

    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).

  • Trubrit
    Trubrit Member Posts: 5,626 Member
    PhillieG said:

    That's Swell :-)

    I like using phrases from my youth. Jeff is the guy with the Harley rides.
    I have Harley Doles to contend with! He makes cancer seem like the sniffles!

    The antibiotic is helping a lot with my toe. I wanted to go to a podiatrist to have the nail cut back but since I'm on Avastin as well as Xarelto (for a PE from two years ago) my Onc wanted me to see her first. When she saw my toe she felt the antibiotic might do the trick.

    I'm very open with people that I'm not super close to. It dosen't make sense on many levels

    Ah, let me shake my brains into place

     Jeff is the guy with the Harley rides  

    I knew that! 

    I'd blame it on Chemo brain, but I think it was just a normal mix-up. Sorryimage  ! 

    I must apply to Jeff, to post a picture avatar, though I have seen a picture of Jeff, and darn it, he looks allot like you, so I don't think it will help.

    Take care of that toe. Take care of that body. 

    Sue - Trubrit

  • ron50
    ron50 Member Posts: 1,723
    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).

    As are you to me Phil

        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.

  • janderson1964
    janderson1964 Member Posts: 2,215
    It's always good to hear from

    It's always good to hear from you Phil. I am happy everything is stable. I know exactly what you mean about the mental aspect. It has been really tough on me mentally and emotionally the past 1 1/2 years. Much more so than the first 8 plus years.

  • JanJan63
    JanJan63 Member Posts: 2,478
    You go Phil! I am always so

    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

  • mom_2_3
    mom_2_3 Member Posts: 952
    Phil

    Phil, 


    It is good to hear from you.  You cross my mind alot and I am glad to hear things are still stable.  We have yet to cross paths in NYC but hoping one day that will happen.

     

    All the best to you, 

    Amy

  • Cathleen Mary
    Cathleen Mary Member Posts: 827
    Phil,
    Nothing but admiration

    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

  • ron50
    ron50 Member Posts: 1,723
    ron50 said:

    As are you to me Phil

        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.

    I was thinking about long timers

        And I think my mate Virginnia is the likely champ. Foxy (her board name) does not come on so often anymore but if my memory is correct I am sure she she is out to twenty one years post stage 4  with colon surgery and a wedge resection of her liver this christmas .We both had the same chemo regime with the dreaded levamisole. As bad as it was it seems to have been effective on colon cancer. She too ha suffered badly from long term side effects. Ron.

  • Easyflip
    Easyflip Member Posts: 588
    Phil,

    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
    maglets Member Posts: 2,576
    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

  • maglets
    maglets Member Posts: 2,576
    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

    also

    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

  • foxy
    foxy Member Posts: 188
    ron50 said:

    I was thinking about long timers

        And I think my mate Virginnia is the likely champ. Foxy (her board name) does not come on so often anymore but if my memory is correct I am sure she she is out to twenty one years post stage 4  with colon surgery and a wedge resection of her liver this christmas .We both had the same chemo regime with the dreaded levamisole. As bad as it was it seems to have been effective on colon cancer. She too ha suffered badly from long term side effects. Ron.

    Another long timer.

    Hi Ron, good to hear you are also still around. I too have many problems, including a heart attack last year, caused by a clot from femoral artery surgery.  I now need a walker to get around, and I can not do very much. Still I am still here, but now have four collapsed lumber vertebrae.  Foxy.