Can't fix cancer with a band aid!!!!

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Asian88

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What I know is that there's a company in the states which has obtained FDA approval and started to offer immune therapy. You can at least do some research and see if your cancer is within their capabilities. If it is, contact them and get an idea about the cost. Remember the movie Armagaddon? The funny guy Steve Buscemi thought the mission will fail so he borrowed a lot money to enjoy his time beforehand. You only live once, if this technology works for you then why not? You can figure how to repay your debts for the rest of your life. Maybe you have to temporarily quit this hobby but you will still be happy.
 

UhOh

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Dec 11, 2011
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All things aside, I get what you're saying man. The point comes when you have to decide whether or not you accept your fate and the coming end and just go from there. It's a place we'll all be at some point but most of us haven't been there. It's easy to dispense advice from the sidelines.

I don't know what to say to you to be honest. But I wish you the best in whatever your decision is. If you need money perhaps this forum is a good place to start. If guys can pump 5 grand a month into pussy, surely they can spare 50 bucks to help you out.
A noble gesture but on a site like this where everyone wishes to remain anonymous how would anyone contribute?
 

johnsmit

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May 4, 2013
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Not asking for money from any of you guys !!.
The fund raising site was jtstca thought some One had suggested to me a month or two ago.

As for borrowing not an option either..allready in dept and credit gone.. I was happy I was making enough in the last 3 yrs to get by and maybe some time see a girl .
These days I have been putting that extra into alternative medications.
 

johnsmit

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Sorry your going through this too
I totally agree
I am embressing every moment
And only wish I had a bit more disposable to enjoy the time i have
 

johnsmit

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Time really flies.
But nothing has improved .I saw a counselor to see about financial help which I can't seem until I am sealed by treatment or terminal. And we also just talked in general about what to do but not much resolved.
I also saw the surgeon again and his recommended approach has not changed accept it probably be more involved then originally 3 months go .of course at that time I was put on a list and it would be 6 weeks or more .But that stalled because I wanted to talk to a oncologist and see what other options I had .Seems I don't have any with the established medical system It surgery or pelative care to manage my death.
So seeing the surgeon again just put me on the list for for 6 weeks or more.altuough I want yo see the results of a PET scan on Nov 8 to see if o.o have cancer in other places..That will determine if surgiry is help full or the doctor may decide he can't door any more .especially know that I don't want to be mutilated which is the reality of any surgery in the next 2 months . It will have been 7 month since i first went to the doctor and over a year that I have had a noticeable cancer.

As for treatment I have only that which I picked off the internet and what some of you have suggested. Some i have done other not .
Has anything worked it is impossible to say ..it may of slowed it down and maybe improved my immune system to fight matastised cancer.But my tumor is now 5 cm by 5 cm and 2.5 cm thick.And it bothers me off and on.
Also I had an abcessed tooth in the area that I got pulled
That now is more pain full .A prelude to how pain full this csncer will be come ..Magnify it by 10 x
 

johnsmit

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You it great that we have a free as per say medical system.But as we all know it has many draw backs in getting treatment. First is the long waits ,unless your taken to the hospital emergency or your doctor is knowlagable in fast tracking your procedure.

Cancer treatments are probably one of the worst for wait list and considering it usually all goes through the cancer society which has the doctors tied in to them to coordinate all treatments it seem.There is no where else you can go in Canada to get cancer treatment unless it us through the cancer society and the provincesual MSP.

When it comes to cancer treatment not every province has the same treatment available. Or they have certain cities specializes in one type of treatment.
For example Victoria seen to have a great cancer surgeons , radiation treatments and some immune therapy ,But if you want proton beam radiation it is in Vancouver ,stem cell treatment in Vancouver and otger tyoes of immune therapy is in Calgary .
Cost of travel make it possible to get the treatment that may be best or the one that the patient is comfortable with doing..

In the US there are multsbke hospital in each large city that does many different treatment and you can pick which one you want. Of course they are expensive.
And with out privet insurance or mortgaging your house they can't get treatment either.
But the figures we here of hundreds of thousands of dollars are exaggerated and it is shown that insurance company's less then is usually billed.
Also some parents in Canada has got the MSP to pay for treatments in the US. Of course not for living expenses so you still need lots of money to go down there if you are a proved.

In my case none of those are options.

As for our cancer society and treatment facility in Victoria, I have heard of good result and bad..and I am not brating the idea because it seems to help many people that want something like that and I problem will get some help out of the whole set up of centralized resources.

But I find it depressing and attitudes fake. Let's face it all the patients that go there have cancer and are hoping to get treatment that helps them live. The young and old , But over half will die of the cancer or the treatment they received that nature of where cancer treatment is.

So i all so can understand that while the staff is all about being friendlyvsnd comforting they will see so many people cone and go that are not going to make it through .it defiantly would take a it toll in a caring person through the years .And young people that start to work there because they think they can help soon realize they can't attach to any patient because they may die soon.

I feel that reality and really don't want to go in there much
It not a touchy feel good place it just empathetic but complacent at the same time because they have seen the same sickness and family heartache thousands of times

Don't know what the answer is .maybe smaller groups more honesty about how they treat cancer and people. You know they don't even want to say the word cancer when talking to you .

I realize but of this criticism comes from my loner nature
And although I need a friend now and then especially thorough this time I usually do with out .

There was an interesting thing I saw about the Mexican cancer treatment center where the patient was touting the benefits of treatment down there. .But it was more about saying how great it felt to be in a living caring place where it felt like family a great touchy feeling atmosphere that is said to help people heal better or die peacefully
 
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sevenofnine

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Nov 21, 2008
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I remember my cancer,
and I honestly felt like a slab of beef going down the processing line. there was no thought to whatever emotions I was dealing with.
everyone seemed so detached.

talking with my doctor when I had a serious medical incident a few years ago,
she said we are very good at assembly line medicine,
easy to diagnose and standard treatment protocols ,
where they are lacking is unusual sort of cancers or diseases,
or changing established treatment procedures

a friend had prostate cancer recently and it was pretty much snip and tuck and down,,
im obviously over simplifying, but its pretty much an assembly line, line them up ship they out.
 

johnsmit

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Up date..

I have been contemplating more about life these days..still have not resided myself to dieing,and also have not been able to make very many preparation for when that time comes.i still not sure when that time will be , just like most of you.
But because of the nature of melanoma and it's rapid growth I know I am running out of time.

Someone said to me recently that they are a glass half full person. And I am a glass half empty..Acctually I think of my self as an empty glass person and life add to my glass each day with what I need. It never seems to be an overabundance,although I have had my days in the sun .Generally it is enough for my needs and then some.And that could be money or job,friends and interests , but I have got by on it and very thankful thstbi got this far considering I can be my own worst critic. So my glass had been filled and refilled through this time of sickness and I gave used what I could and the progesion of the cancer has also drained away more ..so that I am almost always running on an empty glass.
Of course it get added to each day And I am happy and as healthy as I can be expected to be under the circumstances.

I got some good news last week from the PET scan that ii had been waiting for the last 2 month.
Other then the rapidly growing tumor on my chin , they did not detect any Other areas of cancer in my organs or main body .Which is great and i can stop worrying for now about those other pains. But as it turns out a PET scan is not all seeing.It can only see active cancer that a million cells or more,so in the last 5 month since the first CT scan nothing has grown enough to show up.
I'll add that to my glass

I had been waiting to here the results of the PET to reside on whether to do the operation.. of course as you all know I don't want the operation or all the complication and deformity , and a negative report would of made it easy to say I did the right thing in rejecting that treatment. Of course this almost 5 months later the cancer is 5 time the mass and the operation will be more invasive. Now it will involve removing 3/4 of my chin or more and underlying jaw bone ,along with a number of teeth. Also it is another 2 month wait .As the Doctor said to me I had people coming in here every day begging me to remove their cancer ,they got priority over me who was unsure and I deffinetly am not wanting it.

The reality is , that in the 8 month since I first went to get this delt with I have had no treatment from the doctors of the cancer agency.,Any thing that may of helped me has been on my own initiative or ideas from some of you and others.
And 4 weeks ago I did finally go see a very good natural path to get some clarification and guidance through all the natural path remedies on the internet.
Luckily many of the thing i was using he agreed with.And he all so put into perspective some other that I did not use..Again not all remedies work for all cancer or all people..and where I may of slowed it to some extent and maybe slowed its from spreading to other part of my body , it still is growing aggressively.

He even said that my best hope was to have the cancer remover and gave me stuff to help till that time ..
Of course now after the PET scan I have told him I still really don't want the disfiguring operation and the doctor thinks there is a very high probability that the cancer will return ..Also there are so many draw backs to having mouth and jaw sugury and the other complication .I can not image myself wanting to go through it.Not saying I could not but also I just will have a very crappy quality of life for a long time or I just might die in a short time ...Not much better then what I am facing with out the operation.
I feel damed if I do damed if I don't...

The one thing I am thankful for by not having the operation is that in the last 4 months I still have been able to enjoy a relatively normal life.Considering I have changed my eating habits to healthier and i have been able to manage with out to much pain up until now. Yes there are nights and other time when it can act up and I ask is it worth it or how much will I be willing to go through before I want to give up and have it end.
I looking to plan for that time but to feel I am anywhere close..Never know what the next few weeks or months will do to change that out look

Dispit my reservation for the operation I still said put me on the list ,I still can say no.
In the mean time as I have a 2 month wait or so the natural path will try a few things that he has seen results from in his other patients.
Of course cost decide what I can try .
I am not able to do treatments that cost thousands or more a month. A few hundred up to 500 or 600, that all I can manage .

I can see why many people just go the standard route because it is easier, other people look after it for you and most of the costs are covered by MSP.
Of course if you want to jump the long wait list then you have to pay for it your self, and those that can afford it do just that .
 
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johnsmit

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I came to a fork in the road and had to make a decision on the operation early .
They booked me for the operation on Dec 12. I had an appointment with the oncologist and the plastic surgeon last week .
But after talking to my surgeon a week earlier and being told of the possible extent of the operation, I wanted to pass on all of it..
The oncologist gave me the option of having immune therapy,,which will be an intrrvenious treatment every 3 weeks starting on the Dec 11..

If the side effect are not too severe that will go for 3 months..Hopefully it does What it says and boosts my innuen system to go after the cancer ..
And side effect is that it could go after other parts of my body too ..so will have to monitor it very closely.

I still could end up kissing my jaw and teeth good buy just from the effects of the cancer progressing but I suspect if it gets they far I'll be close to the end .I won't be asking for any operation to mutilate me just to gain a little more time .i dont see any purpose for that .

In this case I am going to take the road least traveled and see if there is more sunny days among the way .
 

jgg

In the air again.
Apr 14, 2015
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The only thing we can't get more of is time. I hope you have lots and use it well John.
 

johnsmit

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Yes it has all ready been a road of many turns and cross road whichbi have had to make chooses in which said to go .

These days I find myself retracing some of the path I toke. And What did I do with the time i have had..

There are some traces left of myvfoit prints on the past. But alibi will find that much of my existence will be dressed just as I noticed my own fathers existences had been all ready wiped clean in only 12 yr period.
Old friends that knew him are also gone. One of the homes and businesses he build is gone as is the profit from its sale.
His son too may be gone and with out an off spring to carry on the name ,although I think it is the daughters that carry the generation on and hid does have done and grand children.

For me that's not the case of course.
I find myself once again just thankful for each day And seeing a new the life around me .I find It quite wonderful and peaceful.

I am may have a few ideas I would like to do and still ideas come to mind that interests me . But I don't have any urgency to do them . Most thinks that I have considered as something should do are not done ..and I don't think It will really matter if they are or will it effect the world one way or the other.

For now it don't be treatments hope there are few side effects and find some interest to do out side of my job..and hope I still can do my job.
 

johnsmit

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Had the first treatment of my immune therapy yesterday.
There might be a few side effects come up in the next few day hopefully not too bad.

To day, Dec 12 would of been the day I could of had the operation. Weather I made the right decision or not , I'll never really know .
What has happened with the cancer from the day I rejected having the operation .. is that it has acted up and more painful at night .Usually I was able to manage the pain with 2 tylonol and 2 advil. But the last few nights had been tuff to get it to go away all night .
I going to up my meds to tylonol 3 when I need it.

I know when I look at this tumor growing bigger and the pain getting worse i wonder what is the right dicision.
And If any would actually stop the cancer from growing or still being present .
If I get an extension on my life ,I'll still prob be living with supresing the cancer and it could at anytime start up anywhere .
It not a great thought but it is most realistic considering all we have been told about the nature of cancer.
 
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sevenofnine

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yeah we will all be dust one day and no one will remember us.
very few people will actually make it to the history books.

the internet im told remembers everything, so there is that, put something out there on the web, and it will last forever somewhere,
it is one of the reasons why I picked up writing and drawing and now doing some water colour pictures. portraits, pictures of family and friends
something that will out last me, and maybe my kids and grandchildren.

even if it does, the essence of who what is me, will be lost.
I think that is why we turn to god in some was, hope in something bigger then us, bigger then life.

I think faith is a gift, not all of us have,

right or wrong, your decision I dunno, there isn't a right or wrong you just do what you feel you need to do, we all do,
and you know we will never really know, what if,
 

CWipes

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Be warned, nothing medical is allowed to be discuss here on Perb.

I've already received multiple warnings.
 

Fred Zed

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UP ABOVE SMILING
Be warned, nothing medical is allowed to be discuss here on Perb.

I've already received multiple warnings.
Asking for specific medical advice is obviously not allowed. Discussing your experiences and giving your opinions in an adult discussion is permitted. For all of you currently going through a serious medical event , our thoughts and prayers are with you
 

johnsmit

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Thank Fred Zed.
I definitely have tried to keep my comments to how I feel about what I am going through and not geting into any details on medical treatment other then what is know as standard treatment . . I am thank full that the thread has not run affowel rule 10.
Anyone thar has had comment or suggestions on treatments options have known to MP me and not post on this thread ..i appreciate that.

I'll just up date for the new year..
I am still feeling reasonably well and I am looking forward to my second imunie therapy tŕeatment at the hospital tomorrow.
I hope that it is effective and the side effects are minimal so I can continue and gain some benefit from this latest attempt to treat the cancer. Actuall the only treatment I have taken from the cancer agency .They don't have much else available

This will go on for 6 months to determine if it is working .
All I can do is hope that the cancer stops grown ,does not spread and shrink. ..all that would be good .

Happy New Year.
 

johnsmit

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There are a lot of thoughts that constantly stay with me in life and these day some can be more emotional .

I was watching a Robin William's movie the other day "malleniem man" .It was good for its thought provoking ideas on what it means to be human and facing our mortality. It caused me to have the first big cry since my mother died 4 and half years ago. I know I am pretty emotionally fragial over my own realization that I am terminal il even with treatment it I will still be living with cancer not necessarily cancer free.,and reality is that at some point it will cause me to die..

Even though that is something I accepted very early in the prognosis and I have not given in or given up on surviving for a while longer,it still effects every thing I do and say .. I don't make any plans other then get up and get to work to give me an income and something else to think about other then how I feel in general.

It would be nice to get away do some thing I enjoy or be with a friend for awhile ..but just not happening .

As for the movie ,the character life as a robot looking for his humanity reminds me of myself. In the move the robot served the family that bought him..and yet he has his on personality that caused him to explore his imagination and creativity along with want his rights as an individual.Which the owner and his daughter agreed with.
But what struck a chord in me and my existence is that the robot was a lone..he did this on his own for most of the movie.Yes he had encouragement and at the end a love and life partner , but a greatrr part of his 200 yrs was perusing his quest on his own to realize his dream.

Now he had a greater dream them i ever had, but It is the loneliness that I felt and his quest to be accepted..In his case as human.and to accept that to be human is to also die ,where as him being a robot could live for ever he was willing to give up immorality to be mortal like everyone else.Quit a sacrifice. Which was more because he loved some one more then him self and wished to die when they died.

Not the case with me . And I don't find accepting to giving up my life that easy and it won't be because I love someone . I am selfish of the time I have ,but like the robot I will prob. Have to make choose at some point if I want to go on with the struggle and illness or decide to end my own life.

Of course I don't have to much to say about it .Not much then anyone else ,we generally just go through life not knowing when that time will come.When we are younger it not what we think about and when we get old we know it will come but fig we can live to 90..

Of course I never quit live in denial of death I was brought up by a father that was 40 yrs older then me when I was born and he had seen his share of dieing ,so he kind of thought he had to prepair me for his death too..and I did dread and try my best to accept his and my mother's dieing on day.. In some ways it made life a worry and stressful and it is part of the reason I stayed home till I was 52 .I did not want to loss my parents ,so I spent more time with my parents them most people would. I am happy I did. And that they lived to 90 in reasonsble health and it helped made me accept there death a lot easier. But it also could be part of the reason there never was any real relationships or close friend or I just am more comfortable being a loner.

. That probably was the one thought that struck me the most ,here I was all alone watching this movie about alone robot that was different from the rest..We were so much alike as individuals...Creative, inventive,inquisitive and seeking the meaning of our exsitsnce and the meaning of life...

Of course I am not a two dimensional movie character and in many way I have done much Of what i want and done it my way..,of course could always of done more,done it different and maybe still can if i wanted to. But i have few things I could of change and a few regrets .

I had a good cry which is good to get those emotion out.
I am sure I will be overwhelmed a number of time in the month to come.it is not the easiest thing to deal with and not the easiest for other to help me with either .We all
afterall is said, end up facing our mortality alone .
 
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