CSN Login
Members Online: 1

You are here

A Much Needed Update

PhillieG's picture
PhillieG
Posts: 4911
Joined: May 2005

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.

Trubrit's picture
Trubrit
Posts: 5296
Joined: Jan 2013

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

PhillieG's picture
PhillieG
Posts: 4911
Joined: May 2005

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

Trubrit's picture
Trubrit
Posts: 5296
Joined: Jan 2013

 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. Sorry  ! 

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

John23's picture
John23
Posts: 2140
Joined: Jan 2007



Normal
0






MicrosoftInternetExplorer4

/* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin:0in; mso-para-margin-bottom:.0001pt; mso-pagination:widow-orphan; font-size:10.0pt; font-family:"Times New Roman";}

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

PhillieG's picture
PhillieG
Posts: 4911
Joined: May 2005

I may need a toe-job Tongue Out

jen2012
Posts: 1607
Joined: Aug 2012

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's picture
PhillieG
Posts: 4911
Joined: May 2005

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.

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

    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's picture
PhillieG
Posts: 4911
Joined: May 2005

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).

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

    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.

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

    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.

foxy
Posts: 190
Joined: Oct 2005

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.

ron50's picture
ron50
Posts: 1729
Joined: Nov 2001

   Mate i don't think that it really matters what has been cut off ,has fallen off or is not working as long as we are still running we are still in the race. I was just talking to my nephrologist yesterday about levamisole. He said that the diseases it is causing amongst cocaine users in America(illicit drug dealers are using levamisole to cut cocaine) are so rare that they are giving rats levamisole to try to cause the same diseases so they can study them. Perhaps we could volunteer.I am sorry to hear about the heart attack . I have spent the past two years going to a cardiologist for frequent ventricular and atrial ectopic beats. He decided this year that he did not need to see me. The fact that I was still alive meant they were not a problem. Hard to argue with logic like that. I have been on oxycodone for the past 18 months for lower back problems. Now I have to get off it because it is causing pain. If that is the case I should give up doctors. It appears the only thing not trying to kill us is cancer. Try and stay as well as you can and happy anniversary for Christmas. Ron.

Lovekitties's picture
Lovekitties
Posts: 3355
Joined: Jan 2010

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

janderson1964
Posts: 2215
Joined: Oct 2011

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's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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
Posts: 965
Joined: Nov 2008

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
Posts: 827
Joined: May 2011

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

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

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's picture
maglets
Posts: 2596
Joined: Jun 2006

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's picture
maglets
Posts: 2596
Joined: Jun 2006

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

geotina's picture
geotina
Posts: 2121
Joined: Oct 2009

Thanks for an update on how you are doing.  None of this crap is easy to deal with, for the patient or caregiver.  We just plug along and do the best we can.   Surviving a stage IV diagnosis and wondering each day if it will come back and pop up somewhere else must be a tough thing to deal with psychologically.   Seems like you are doing your best to handle it the best you can.   In reality that is all we can do, handle things the best we can. 

Take care my friend and I wish you continued stability with your cancer.

Tina

PhillieG's picture
PhillieG
Posts: 4911
Joined: May 2005

I know we all have each other's backs with this. Mainly the focus is on physical treatments and not so much the other stuff. I know I'm not unique and overall I handle it very well. Part of it (for me) is setting up boundaries because I've taken on greater tasks as far as cancer goes. It's a little complicated but I enjoy doing what I do and I also feel a commitment to the community.
Sorry I'm so friggin cryptic about this

 Took these today.
Look up people, there's beauty all around us!

Ra, Ra, Sis Boom Bah!
Ra is the Egyptian Sun god

A very rare Double Sun Halo with a side order of SunDog

Trubrit's picture
Trubrit
Posts: 5296
Joined: Jan 2013

I especially like the first picture. Is that your fist in shadow. 

And you are right. So much beauty all around. 

Sue - Trubrit

PhillieG's picture
PhillieG
Posts: 4911
Joined: May 2005

Fist??? It's my head!!!

 Tongue Out

janderson1964
Posts: 2215
Joined: Oct 2011

Very funny Phil. It took me a second to get that one. So maybe I am a knuckle head too.

KAS1966
Posts: 1
Joined: Oct 2015

Hi Phil!! I am brand new to the site and was diagnosed Stage IV in July.  I, like you, it sounds, are usually the positive one and believe any moment feeling sorry for myself is a waste of making a good memory.  That being said, I think we all have moments that we go through different emotions and I think we have to ease up on ourselves and say we are entitled. From catching up and reading your previous posts, I'd say you are an inspiration to many and give hope that there is life beyond the two years they gave me. Please, keep the faith but yet take the time to reflect you need to.  

beaumontdave's picture
beaumontdave
Posts: 1090
Joined: Aug 2013

Phil, seems you veterans of the blog develop an outlook and calmness that the rest of us can find reassurance in. I would never presume that it gets"easy" after a while, it certainly hasn't in the eight years after my diagnosis. I'm keenly aware of my hold on life, and conversely, how beautiful the simple pleasures[ like your prismatic skies] are. But it's nice to hear folks adapted to this new normal with all it's anxious moments and tedious reminders. Thanks for the steady voice[ Yeah, I know it's typing]......................Dave

 

 

Helen321's picture
Helen321
Posts: 1410
Joined: May 2012

It's so weird how you get used to things but underneath, you're not really fine, you just manage.  I went from hell back to a new normal.  I still remember my old normal and I miss it some days.  My old normal was fantastic.  Most days I'm just living this new normal and getting through it the best way possible.   The psychological effects are huge.  I sat in my doctor's office and cried for a full two hours recently.  My doctor told me that I need to go back to the therapist.  Congrats on your stability, sorry about the infection, those sure do hurt.  You're the one who told me "cancer is not a death sentence" my first night on the boards.  That became my motto. 

fedester
Posts: 757
Joined: Jul 2004

Hi buddy,

Great to see you are doing well. I am doing ok.

Like Ron said we have other problems we deal with after chemo. Myself i have had congestive heart failure and high blood pressure which is being treated by meds. I had total knee replacements 2 years ago.  I was finally let go from my job in march 2015 after 27 loyal years.  At age 57 you become expendable and i am considered a displaced worker.  I have been on unemplyment since then and the state is sending me to school to add to my skills set. I have had no luck yet finding a job but i have to keep looking and applying as i have a disabled son that we take care of and i have many years to contribute to society. All the best to you in the future and maybe we can get together and have lunch and exchange stories about our journeys.

Never ever give up!!!

bruce

Subscribe to Comments for "A Much Needed Update"