Seven years later

Seven years have gone by since the Prostate cancer scare. I had forgotten about this blog and came by it by accident a few days ago. The good news is that I am still Prostate cancer free. Testing for the next three years and if the PSA continues to be negative then I will be regarded as cured.

I read my old posts and at times can barely recognize myself in what I wrote. Reading them again brought up a lot of suppressed memories. I’d forgotten about the roller-coaster ride of a journey. Some of the issues I raised continue. I am who I am I guess, cancer or no cancer. One thing I do want to leave is hope. Even in the darkest of times hope remains. Even with cancer.

It’s over when it’s over (if it’s ever over)

It’s been six months since the surgery, which feels like a lifetime. Labeled “cured” by my urologist you’d think the prostate cancer is over and done with. I wish. The hardest part to accept is accepting what happened was beyond my control. What’s tougher to deal with is that what happens next is beyond my control. Will the cancer return? If so when? If it does return where will it spread to? One of the most common sites for prostate cancer to spread to are the bones. One of the most painful ways to die. When I am going to die and in what way are terrifying unknowns. While that is true for everyone, having cancer overcomes most individuals’ denial of mortality. With cancer the icy hand of death repeatedly slaps the face. Even worse, it erodes hope for the future.
Two events triggered my return to fear. The first was the death of NDP leader Jack Layton. His prostate cancer diagnosis came only six months before mine. While the media states that it was not the prostate cancer but some other unrelated cancer that actually killed him,the time frame involved is terrifying.
The second event was my birthday. My diagnosis of prostate cancer came when I was at the same age my mother was when she died of cancer. While it may not make sense logically, I feel I am now living on borrowed time.
Other contributing factors are a series of other health problems since the prostate surgery including a surgery wound opening up and becoming infected, a night in hospital for a gastrointestinal problem, a sinus infection, several days of nauseating vertigo, an infected tooth that had to be extracted and daily bouts of headaches. While none of these are serious in themselves, each adds to the thought that my body, which I used to have full faith in, can no longer be trusted and what happens to it is totally beyond my control. If I can’t have faith in my own body what can I rely on? The answer of course is nothing.
Not knowing what the future holds makes planning difficult. For example what’s the point about making plans for retirement when there’s a good chance I’ll be dead before then. There’s pressure to fulfill my dreams all at once because of the uncertain future. Of course achieving them all is impossible and because of the sense of urgency even those accomplished cannot be fully savored. Withou assurance of a future it is hard to maintain hope. And without hope what’s the point? My life is out of my control and leaves a sence of pessimism. A feeling of loss of what I once was and a loss of what could be.
In many ways this sense of powerless and inability to count on and look into the future is a lot worse than the prostate surgery.with the surgery what was happening was a real, observable event that had a beginning and end with a predictable and reliable recovery accompanied by lots of support from others. This torture of the mind of not knowing the future makes it impossible to look forward to things. What remains is a constant source of fear that I cannot get others to understand. It is a battle I’m fighting alone. It is torture with no resolution possible, eating away at my life with a predictable outcome which I am powerless to prevent.

How Cancer is so Ordinary

Cancer, as a subject, is the fodder for fictional drama, whether in written form or on film. Such works of fiction make cancer a melodrama full of shock, anguish, pain, suffering, love, tears and loss. The stuff that requires the box of paper tissue nearby for the viewer. In the real world, there is a marked lack of that drama. Indeed, cancer can seem, well, so….ordinary. On the outside at least.
While drama is full of images of bald women wearing scarves, or a hospital bed containing the wasted body of a person barely able to speak. The reality is different. From the outside (ignoring the surgery scar) I appear the same as I did nine months ago. I had cancer. I had surgery. I’m am working full time again, out mowing the lawn, etc. There is no hair loss because there was no chemotherapy. You probably pass people dealing with cancer every day without giving them a second glance. For the most part cancer is the silent illness. People often continue leading their everyday lives. The suffering part occurs in private behind closed doors. The stuff of dramas, even when true, cover only a small proportion of the actual cancer experience. Generally the focus of drama is on the diagnosis, the negative effects of treatment, and usually the tragic death afterwards, with the patient surrounded by a circle of weeping friends and family.
Reality is somewhat different. Usually from diagnosis to treatment to end of treatment you are in a state of shock, You do what you have to do to get through the experience. Sharing the diagnosis with others usually produces a chorus of denial that there will be a negative outcome. Then after treatment there is a chorus that everything has been dealt with, the future is not to be feared and don’t it mention again. And that’s from the caring. For others hearing you have a cancer diagnosis might as well be a diagnosis that you have the plague – avoid at all cost as if it is a communicable disease. You learn a lot about yourself, and others, when you have cancer.
In reality cancer is more of a marathon. But rather than having one course to travel on there are many. With many directions to go in. And with no clear distance to go or finish line. You keep plugging away long after the crowd has gone home. No drama, just a long, lonely road.

I was wrong, again. Life after cancer.

One of the biggest lessons of having cancer is realizing that I can frequently be wrong. I was wrong that I thought I had outgrown my need for writing about my experiences. Hence the long gap in time since I last wrote.
I was also wrong that my cancer has gone and that life would get back to normal. While the cancer, as far as I know, has gone, life, or rather I are far from being back to normal. I am now searching for normality, which can’t be the same one as in the past.
In the weeks after my surgery my mood was uplifted. The anxiety that had plagued me for months had gone. Each week my physical condition was improving, which bolstered my mood.
Now, several weeks later, physically I am almost back to normal. I have also gone back to work. Emotionally however it is a different story.
Statistically my chance of living a normal lifespan is good. I’m not a firm believer in statistics however. Statistically, the chances of having prostate cancer at my age were low. Statistically, having an increased PSA level would indicate cancer in only 25 percent of the time. Clearly I have been on the minority side of the statistics.
Recently I have been plagued with thoughts about my mortality. I have a constant feeling of pressure that I am running out of time. That I will not be able to accomplish everything. Questions of why bother planning for the future when I don’t know how much of a future I have. Can I again count on my body and mind to be strong enough to achieve. Worst still, the uncertainty is preventing me from making plans. I no longer know who I want to be. I have doubts about whether I will make the right decisions.
I no longer feel that I fit in with everyday life. I sense the world is now a different place that I can’t make sense of. People around me have been, for the most part, very supportive. I feel however that unless someone has been through cancer what the mind goes through cannot be fully understood. Heck, I’m living it and I don’t understand. It’s an uncertain future. I am no longer who I was and I don’t know yet who I will be. It’s confusing and scary and exciting at the same time.
One thing I promised myself after the cancer was that I would no longer let the small stuff to bother me. Life is now too short to get bogged down in the mundaness of everyday life. When I was at home recovering I was relatively successful in doing this. However, now back in everyday life this sense of peace has been more difficult to maintain. I am better than I used to be but still periodically fall back into being upset over irrelevant stuff. I am disappointed that even the fear of my death in the near future has not been enough of a lesson to give up those old habits. But perhaps I am being too hard on myself. It takes time to change a lifetime of habits.
The worst part is no longer knowing who I am and where I am heading. Who knows, that might lead to a new, better identity. Or not.

The losses and gains of prostate cancer

Having cancer is not what  I thought it would be. On television or in other forms of media having such a diagnosis is full of drama and emotional turmoil. The reality is different. While there has been emotional drama, for the most part that remains internal. In many ways having cancer is just plain, well, ordinary. Life goes on. I have for the most part followed mu usual of life for most of my journey. The world in general and the little world of mine carries on as before. Having said that there has been a lot of internal change. About my priorities, my way of viewing the world, and my goals for the future. Even though my prostate has been removed and the pathologist report indicated no spread of cancer beyond the prostate, my journey continues. I have learnt a lot and continue to learn. There has been a great sense of loss, but also of gain in this experience. Some were obvious and expected but others unexpected and even surprizing.

The losses

The first belief to go out of the window was the belief of immortality. While intellectually we know that we all die, we maintain for the most part, a belief that it won’t happen to us. Similary with cancer we know it exists, but belief underneath that it happens to others and the very old, but not to us. My getting cancer at a relatively young age shattered the illogical belief of being special in someway in that I am just like everyone else, equally susceptible to anything that can go wrong with the human body.

A second belief that has been destroyed is that my body is strong and I can count on it not to let me down. That somehow my body is invulnerable. My body will do what it does, regardless of what my mind may tell it. I am not in control of my body as much as I thought I was. I n ow realize that it is my responsibility to lok after my body and not the responsibility of the body to be what I want it to be.

Fourth there is the loss of sexuality. At first I thought that without a prostate and ability to perform sexually I would somehow be less of a man. Since my surgery I have not felt that. However, my conscious mind has no interest in sex currently. I was prodded and poked and examined down there so much in recent months I don’t want anyone near there! However there is a sense of loss of what I once had and what was once a big part of my life. However, this may affect a lot of men, based on aging as much as having prostate cancer.My urologist told me that when men are diagnosed with prostate cancer and are told a possible side effect of prostate cancer is impotence most say they don’t care, they just want to get rid of the cancer. He added that six months later many men return to see him at the insistence of their wives to deal with any impotence! My understanding is that men can still have an orgasm after, but it feels different. In a telephone conversation with a close female friend, we both agreed that at least sex would be less messy! After delicately being asked if I could still climax I promised her that I would leave my phone beside the bed and put her on top of the speed dial list to let her know if and when it happens! Earlier I mentioned that consciously I have no interest in sex, which is true, but in the past week I’ve had more sexually-oriented dreams than I have in a very long time. Obviously my conscious and subconscious minds are not of the same mind.

Fifth, is a loss of feeling I am in control of my life and my destiny. The realization is that I’m a lot more vulnerable than I thought I was – to changes in my body and to changes in my environment.

The gains

One noticeable difference is that I am now a lot more patient than I used to be. I think this comes from the realization that there are many things I cannot control or create, leaving waiting for something to happen or to see what happens the only option. No point in getting upset when I don’t get what I want because it changes nothing.

I notice that I and appreciating even even small, everyday things in my life – things that before I just took for granted. For example sleeping in my own bed after four days in hospital felt blissful. I appreciate that I no longer have to rely on a catheter and have come a long way to regaining bladder control.

I have also learnt the importance of social support. Historically I have been a very independent person and have hated relying on anyone else for anything. The truth is that I could have not got through the whole experience of prostate cancer without the support and caring of others. It has also taught me how caring people can be in the right circumstances.

I have also learnt not to sweat the small stuff. Yesterday, for example, it cost $250 to see a movie. Watching the movie itself cost only $12. The rest of the cost arose from the realization on arriving home that we were totally locked out and had to break a garage door window to avoid spending the night in the car. Of course that resulted in substantial repair costs! Previously I would have become very upset about such an occurrence, but this time I was just grateful to get into the house and get things repaired. I’ve also learnt how to break in a house, a skill I hope I never need to apply again!

To be continued…

 

Two weeks later

Change is the only constant

As I get closer to my surgery (one week to go), it continues to amaze me how I can swing between anxiety and calmness and vice-versa whether or not I am thinking about the surgery or prostate cancer. Yesterday was one of the calmest days in a long time whereas today my anxiety level has been very high. According to cognitive therapy the emotional state is dependent on what and how one thinks. I’ve been monitoring my thought processes and periodically regardless what I am thinking the anxiety will emerge. While cognitive therapy has helped millions, especially those with depression and anxiety, I believe it sometimes misses the boat by ignoring the subconscious, which has a mind of its own.
I was anxious from early morning and turning on the radio on my way to work hearing about low-cost funerals did nothing to lift my spirits! And then when I checked my emails at work one had the subject line of how a person can calculate how much longer he has to live! I love the irony of nature.
One change I have noticed over the past couple of weeks is that I’m sensing and reacting to odors far more strongly than in the past. I’m not really a person who enjoys the cold but in the past two days it has been around the freezing point and I enjoy the crisp freshness in the air. It is far more noticeable than in the past. I guess that with the stress my body has put itself in the “flight or fight mode” heightening all the senses as a form of protection. The wonders of the body never cease.

Don’t Do It!

Yesterday I was in a friendly, joking banter with a work colleague when the subject of epitaphs briefly casually came up (yes I have weird colleagues and even weirder conversation subjects).
Later in the day I was randomly thinking (I do that once in a while, thinking that is, with the odd dose of randomness) what my epitaph could be. A few came to mind. The criteria is that it mentions my oddball humour, that I had acquired some wisdom and that I had helped a few people along the way. After having fun with this for a while my small wisdom brain kicked in and asked what on earth I was I doing. How could I be so morbid? The risk of surgery is relatively small and all the statistics show that in most cases I have a good chance of living for a number of years yet. So my advice is if you start thinking of epitaphs there are millions of other time-wasting things to focus on. SO if you statrt thinking epitaphs DON’T DO IT. IT DOESN’T HELP! Push it out of your mind right now (I know that’s about as helpful as telling you not top think of pink elephants bcause as soon as you read it you will be thinking of the elephant). Nevertheless I stand by what I say.

Talking of epitaphs as I’m writing this the song “Let it Be” is playing totally by coincidence on my iphone. So I start thinking that would be a nice one to play at my funeral – STOP!!!!!! Perhaps that planned bit on my epitaph about wisdom needs to be seriously reconsidered.

Ending or beginning?

Today I went for the pre-op stuff. Interview with the nurse, history taken, blood drawn, check the meds, see if the heart is still beating (I could have told them that, with no need for expensive equipment), all the rules about this and that and so on. In 13 days the prostate, and hopefully all of the cancer will be gone.

If the cancer is gone and everything that’s left works the way it should in theory it’s the end and life goes on almost normal.

If all the cancer cannot be removed then it is a continuation of the beginning. But of what exactly? If that is the case then the story has just begun. More treatment? More outcomes? Will each day represent more days of life or more days closer to death?

When something begins we get excited about the outcome. In this case I wish the beginning had never began, but that not being possible, this is hopefully the time to end the beginning.

It comes and goes and comes again

From the beginning I wanted this blog to reflect the private, inner world of someone going through prostate cancer. There is much information on the internet about what prostate cancer is, typical treatments etc., all of which are valuable. I however, wanted to try something different. To record not just the actual processes I’m going through (which will vary from person to person) but also record the psychological changes that can occur quite unexpectedly and without warning, which are again different for different people. Above all I wanted to reinforce that there is no such thing as a normal or right psychological experience. Each and everyone is valid for us personally. The common and harmful thing we do is to watch others to see how they are acting so that we gauge the appropriateness of your actions. Always remember what you are seeing is the external “face” people present to the world and not the feelings and fears they hid from public view.

     I’ve noticed that when I first received the diagnosis of prostate cancer I was scared and craved the support of others, even if it meant only the presence in the same room. Fortunately there were enough caring people, both known and acquintances to understand and offer the appropriate support. The kindest words were from survivors of cancer themselves (I had no idea how many people I worked with had had cancer). I guess they remembered what helped them when they were going through their trials.

     More recently I have been cutting myself off from people enjoying my own company, and more importantly have time to think. Although statistically the chance of death in the near future is small, I have been thinking about such things as where it was best for everybody  that my remains are buried. On two occasions I was verbally chastised about thinking about such things and they weren’t going to happen. I understand the caring meant be these remarks, but I did feel off-target in terms of what I needed to think of. Thinking of such things are not not morbid for me but I do not want to leave behind any unfinished business. The chastisement does not stop me from thinking, but rather just keep the thoughts to myself.

This is not the only reason I have shared less. There seems to be a inner drive to withdraw into myself and engage occasionally in general chit chat but no more. It’s something I seem to be wanting for myself these days. I still cope better when people are around, but I desire more their presence in case of an emergency rather than social get-together. At my work I keep my office door closed more often than usual, not because of any bad experience there (in fact the support has been great), but a desire of inner-peace. It is like the cancer is so overpowering I have little energy left   for idle chatter. Sometimes I worry what others may be saying about this and I hope none take it personally. It’s tied not to them, but what I am personally having to work through. Some understand this, give me space but also periodic encouraging words of caring and acceptance. Others have gone more silent, thinking there’s something I’m bothered about them in some way. At this state it is a very inner-directed time of reflection. Nevertheless, I still need the people.

     I know this phase will change again, and while sometimes I put on an act of being sociable and outgoing, I realize I have to go through this phase. It is exciting to think of how I and others will come out of this when it is passed. I’m sure nothing will be quite changed.