Wednesday, 30 January 2013

Putting a Brave Face On; Planning for the Future

At a time when my friends were finishing school, getting married, having kids, buying houses and other things typical of a young adult, I was going to have to fight for my life.
It puts a person in a really odd position, and it is one that I have struggled with. How to deal with having cancer, receiving treatment, and paying the bills is difficult enough. Seeing all the people you have grown up with start their lives, begin to achieve their career goals as well as starting families from a hospital bed is an impossible situation.

To say this is a difficult place to be is a bit of an understatement. The uncertainty that comes with being in remission, as well as many of the financial difficulties for the future are ever present.

This leads me to my title, how do you plan for the future, when yours (like mine) is so uncertain. I had a lot of career goals, I wanted to buy a house, and maybe one day start a family. It feels like many of these opportunities have been taken away before I had a chance at any of them. 

As any person who has had chemotherapy will tell you, family planning is drastically altered by this. Outside of adoption, or artificial insemination, children are not an option. Buying something “expensive” like a house or a car is complicated by banks who don’t want to lend you money, and furthermore, insurance is problematic.

I have started to save some money for the future, which for me was a big step. Even starting investing, or RRSP’s or any sort of financial planning is intimidating and often complicated. It took over a year for me to start saving again because I would sooner spend my money on today than the future that might not be there. It is a big step, and I am proud of myself for finally being able to make it.

I am sure I will still spend frivolously on some things, and still have to “wait out” the allotted time period until I can start taking out loans (looks like I am a renter for awhile!) but I am confident that I will get there. I finally feel like, although I have an uncertain future, I have some sort of future. And that is good enough for now.

Sunday, 27 January 2013

Being Okay with Not Being Okay

It is hard to admit to yourself that something is really wrong with your life or with yourself. Especially when you go through something hard or traumatic. It took myself a really long time to admit to myself some of the things I went through when going through cancer treatment.Being able to say you are not okay, is very difficult to do. I finally am coming to grips with the fact that I am in some regards not okay with what happened to me, and what has happened since.

It really took its toll on me and as odd as it may seem, it took a year away from treatment to really realize all the brutal things I went through, not only from a physical but an emotional stand point. I joke about it a lot of the time, more as a barrier I think to not really talking about it and I think that has helped up until now. 

I realize that I went through a year of basically what I would call hell with chemo, surgery, radiation and the countless times I got sick. I was basically in pain for twelve straight months.

I know it is nothing really different from what other cancer patients go through, but it doesn't make it any less important. I am now starting to try to take care of myself and deal with some of these things. The hardest part so far has been that I need to ask for help. 

I feel like I have asked for quite a bit help so far, maybe already my fair share if you will. Between doctors, nurses, friends and family, I feel like I have already used up "my share". I don't want to be a bother or cause any more hardships for people. I think that is common for cancer survivors. I was a burden long enough, and I don't want to be one any more.

I am forcing myself to start to deal with these things now. I have gotten very irritable at work, and very unhappy and these are not characteristics of me.These are things that I need to deal with and get back in working order.

Admitting to myself that I am not "okay" has been difficult. It felt like a big shot to my pride, and self worth. I don't want to take up more peoples time, and if I am lucky it won't take up too much, but getting me emotionally back on track is becoming my top priority.

Wednesday, 23 January 2013

Getting Counsel in the Right Places

Finding the right person to talk to about having, or had cancer or any problems you may have with being a supporter or friend can be extremely difficult. You want to find someone you are comfortable with, someone who can listen and respond the way you want them to, and to be the person you can discuss anything with. The right outlet for stress like this is so important yet often difficult, sometimes impossible to find. And no doubt, I have plenty of stress even a year out of treatment.

The problem I have with this is I am still not sure who to discuss my problems with. All of my friends have their own problems, most of my family doesn't want to discuss my issues with cancer because they want to be "done" with it (fair enough) and the people who were around for my cancer treatments have dealt with enough as far as I am concerned. I haven't bothered my friends because most live far away and it is very difficult to talk to them when you need to as a result. No fault of theirs, that is just the way it is.

I have started trying a few different types of counseling with mixed reviews.

The first thing I tried was an online group. These seemed to be the "easiest" because people didn't really need to see me, and while I was going through chemo, this was very important for me. I didn't want people to see me. However, being 26 and dealing with cancer, I was not in an ideal group. I had a lot of people with families, children, "adult problems". They were not really my problems. I ended up either not understanding their problems (obviously they are important but I don't know what it is like to have a child or be retired). And moreover, I ended up being a support for them, telling them they were doing a great job at whatever they were doing, and although it was great to support people, it added to the stress I already had so it became a huge emotional drain while going through treatment. I had to go to the meetings (online) so they would be okay, not me. It is so important to take care of yourself while going through chemo.

I also tried talking to nurses who treated me as well as other patients at the ward I was treated at. Again, not a lot of commonalities. everyone was older than me. It is hard to tell a fellow patient at 60+ that everything is fine when really deep down you are upset that they may of had 30 more years then you get. And then you just feel guilty that you had longer than someone much younger than you. I found this to be a bad spiral so I ditched this too.

Recently, I have started one on one counsel. I think it is okay so far, but I am still not sure how this is going to go. It is easy to tell people that I don't know what happened to me. It is nice so far to get some things off my chest, but I feel until my counselor gets to know me and my problems it is difficult to say whether it is working or not. Being told my concerns and problems are "normal" isn't necessary helpful, but it is nice to have them acknowledged.

One of the biggest surprises for me for an outlet to deal with some things, has been, as silly as it sounds, my blog, and on twitter. Just to be able to write things down and get it off my chest has been a huge relief. And furthermore, I have been able to connect with many people going through similar things. As silly as it sounds, I am thankful for twitter and the internet in helping me deal with some of my issues. I can freely express myself and you find helpful advice from people you have never met all over the world. It is kind of nice.

I think the big problem I have had lies in the fact that I find it very difficult to connect with people after going through cancer treatment. I don't find a lot of people my age who have gone through similar stress or know "how to listen" quite yet. I am still looking to figure this out and find the right people to talk to. I know it is important to find the right way to deal with all the concerns I have now, the uncertainty, and a lot of other problems that come with survivorship. 

At least now, I have started to try to deal with the problem. And I think that is an important step. 

I just hope I can find the right outlet soon because, to be honest, the after effects, the constant check ups, and the taking care of everyone else around me before taking care of myself has completely worn me down.

Finding the right counsel is important. It took me a long time to admit I needed to talk about many of these things. That is the first step, but finding the right person (people) to connect with on this remains a struggle, but it is something I will continue to work on. To quote a line from what is arguably my favorite song "I'm still alive" (Alive, Pearl Jam), and as a result, I will continue to work on myself and make things "better".

Sunday, 20 January 2013

Making my Battle Public

One question I am often asked of by people is why do I get as"loud" as I do about my battle with cancer, and why I don't, or rather can't move on from it, or rather not talk about it so much. I don't intend for this post to criticize, or tell people what is the right or wrong way to talk (or not) about your battle with cancer, this is merely my opinion. How anyone deals with their cancer story is their own decision and are more than entitled to it.

It is true that some people, when they finish treatment for cancer, don't want to be around it anymore, don't want to discuss it, don't want to hear about it. This I completely understand. Why you would want to think about something that horrible and painful in your life again is a bit confusing at times. But for some reasons some people do it.

When I was undergoing treatment, I did my best to hide my side effects and how bad I felt from most of the people around me. It was a complete 180 turn from where I am at these days. I did not want to discuss with anyone outside of my doctors and even then, only when I had to. The big thing for me, was I wasn't ready to tell people, and I didn't want them to worry. I didn't want people to see how weak I had become. I wasn't one of those people who could get up on stage or run marathons while undergoing chemo and be an inspiration to everyone around. I was physically unable to. I had emotional stress from the situation too, and I didn't feel comfortable talking. I was scared to talk to people about it. I still am uncomfortable in many instances.

I am sure many people feel the same way. It is just one of many ways that people go into a self preservation mode, managing things any way they can. Your battle with cancer is your own business. And if you don't want people to know about it that is your decision (I am not trying to pressure anyone to go out and tell the world everything). All I know is when I was sick, scared, and not doing so great, I sure did appreciate the people who were out there, showing their scars and sharing their stories so that progress could be made for cancer patient treatment and care. I have an even greater appreciation for those people now.

So this is why I want my battle to be public. It is why I write this blog, why I participate in fundraisers, volunteer, and identify myself as a cancer survivor at any given opportunity. In a way, it is for old sick Eamonn who used to sit in those beds, but in more ways it is for everyone who is still sitting in those beds. It is an awful place to be, a place I never fully understood until I was in one myself. If it gives anyone a bit of hope it is worth it to me. It helps me feel like I am making a difference. But I also appreciate those people who don't want to speak up. I know the kinds of physical and emotional pain they are going through. It is hard for anyone person to shoulder that load.

I want people to know about side effects. I want people to know that they continue after treatment is over and even when the cancer is long gone. Things such as physical difficulties and mental problems can carry on for quite sometime.

One of the hardest conversations I have ever had was with my family. When I was done treatment everyone was "happy it was over" and was ready to move on. They clearly did not want to talk about it. Again, I get that completely. But it wasn't over (still is not) for me. I think this is why it is necessary for some people to remain "loud" about it. So the issues don't get brushed aside and can be dealt with. I have learned that for me, bottling up my feelings and emotions about my experience with cancer does nothing to help me.

I will be honest, this approach, my approach, does not work well all the time. In many cases it has left  me alone and completely by myself. This is not ideal and very discouraging at times. I do not necessarily feel like I did something wrong, but you have to second guess yourself. This is exactly why I didn't speak up a lot when I was sick. Fear of being alone when I relied on people so much.

I understand that being very open about these topics can push people away, which is a major drawback. Knowing when to shut up about it is something I am learning. I don't want to make people uncomfortable, and I don't want to diminish issues by being "that guy" who always talks about cancer. Learning how to properly balance these things is something I am still working on. It will most likely never be a perfect balance (I tend to get worked up sometimes when talking cancer....).

At the end of the day, I have met a lot of great people trying to be an advocate for cancer patients/survivors/care givers. I have met a lot of really great people trying their best to help out anyway they can which I am sure I never would of met otherwise. I really enjoy seeing the different ways people are making a difference, and while I don't always have the same ways, I can appreciate what everyone is trying to do, and I try to support them anyway I can.

The biggest "Pro" is I have met so many cancer fighters and survivors by speaking up, and I think that has meant the most to me. They are truly a great group of people making the best of a bad situation. And I really enjoy hearing different opinions and seeing the different ways people deal with this, I find it very inspiring, and I hope my voice helps people too. I think this out weighs any "Con" for me.

Wednesday, 16 January 2013

Why Me? The Most Obvious and Dangerous Question with Cancer

I always felt, from day one of being diagnosed with cancer, that asking "Why Me?" was a dangerous road to go down. Although it is obvious, and for most people the most immediate question, I tried my best not to ask that of myself. It is a question that can control your life as a cancer patient/caregiver/survivor.

The main reason I avoid it was is there is no "good" or "correct" answer. Some people have situations that cause their chances to increase of getting cancer, I think we all know that by now. If life were fair, and all things were equal, I probably would never had gotten sick. I am not perfect, I didn't always eat the best, didn't work out as much as I should have, an did (do) drink from time to time, I wasn't super unhealthy, and I was in decent shape (better shape than many people who don't get cancer) and wasn't really exposed to any known carcinogens.

I am also not a religious man, and  I don't believe it was any greater plan or anything like that. I am not criticizing anyone who does believe that, it is just not my personal belief, everyone is entitled to their own beliefs.

The fact of the matter is, I don't know why I got cancer, and I will never know. I can't let myself wonder why. On days where I felt strong, I would block it out as best I could. I felt this question would lead to a slippery slope to worse depression (something that effects cancer patients daily in a lot of cases, myself included) and I didn't want to allow that. Some people just have bad luck, they have a gene, or something like that, and it is really out of their control. They get cancer, and they enter a fight for their life.

Sometimes it is impossible to block it out. Don't get me wrong, it creeps into my mind. Cancer is the only thing that has made me scream in pain and cry in from being emotionally drained. When you are at your weakest it can be hard, if not impossible to completely block it out. It is hard to solve questions with no obvious answers.

I never discussed "why me" with my oncologist either. We had an understanding that we wouldn't wonder why I was here, but rather focus our efforts on getting out of here.

Looking back, I find "why me" to not matter anymore. The fact is, it was me. All I could do was deal with my situation as best I could, as imperfect and sometimes undignified as my physical battle was (and my mental health struggles continue to be).
This was me during chemo (first pic I ever put up of me during "that time")
Cancer sucks (as do all diseases) that  hurt people, or take people too soon. I try not think about why cancer hurts so many people, but rather, how I can fight back and help others going through cancer treatment.
Me now, looking much better,  Cancer free!

Sunday, 13 January 2013

Why I Ride my Bike

I have never been a "cyclist" until recently, and to some degree, I still am not really.

But I do ride my bike because it gives me two big things; Hope and Freedom.

When I had cancer, it was Ewings Sarcoma, and in my right leg. A common place for this cancer to occur. Given that I had surgery on that leg, removing a large portion of my inner right thigh, and with the extra time it takes to heal when on chemotherapy, it was a long time until I was able to walk again, let alone do any type of "real" physical activity.

As the months went on, and my leg did slowly heal, I purchased a rather cheap bicycle (I have since bought a better one, my advice, don't get a cheap bike!). I could only use it once and awhile, but when I did it felt great. I had been told that being able to exercise would help me during chemo, so I did it as often as I could.

After finishing treatment I used cycling as a way to get back into decent physical shape. I love in Vancouver, which although has a beautiful mountain view, is actually quite flat providing a great place for an amateur cyclists such as myself. I used both bikes at the gym when the weather was bad, and my bike outside when the weather was nice.

As much as I like being around people sometimes, I find cycling, spending time by myself extremely freeing.  I can just get on my bike and go. I really enjoy cycling by the ocean, I always find it very calming, sometimes that feeling is in short supply. It gives me back the freedom that was taken away from me when I had cancer. It is as hard or as easy as I want the day to be, and I can be alone with my thoughts. I use it to focus myself, and to get my world back on track. I have heard many people use sports such as running, or skating, where you can be by yourself in a similar way.
Me in the rain! (Not a great pic but oh well!) The yellow flag is for cancer survivors!
I use cycling as well as a way to raise money and awareness for the BC Cancer Agency (The hospital where I was treated/am monitored). Last year I raised almost $5000 ($4820 to be exact) for cancer research and this year I am captain of a team (Team Phoenix) that has raised almost $10000 since its inception in July. It is in this way that it gives me Hope ( to learn more about the ride!). There are tons of ways people raise money, or help cancer patients and the families effected by them, but this is one of my ways, and I love it. I have met so many great people (one of which who got me to start this blog!) at the ride office, they truly are a great group of people. I use this as a vessel to help and give people hope. It gave me hope when I was sick. To a cancer patients state of mind, this is arguably one of the most important things. As such, this is an event I will participate in every year, as long as I can.
Me and Sara at the end of our ride for the BCCA! (240 km!)
 I encourage everyone to give to something like this, or get involved with something in their neighborhood (I know many of you do and I thank you!). Since we live in such a global community, and with information transfer so easy this days, no matter where you are, you can make a difference in peoples lives. And also to find activities that benefit their health, both physically and mentally. It doesn't have to be cycling, I just know this one works for me.

When I ride my bike, my leg is creaky, but it is getting better. Each mile I go makes me more focused on the next.

Cycling has given me my freedom again, it will always give me hope, and for what it is worth, piece of mind.
Me at the Terry Fox Statue (Victoria, BC Inspirational!)

Wednesday, 9 January 2013

The Trouble with Caring after Cancer

One of my biggest struggles as a cancer survivor is caring about things.

The reason for this, is I know how quickly everything you do care about can be taken from you when you get sick. I know (as do others) how hard it is to care, when in three months, or whenever your checkup might be, you may not be able to care about them again.

What I mean by this, is if you fall into cancer again, you can't work on things like a career, a family, or even your friends and family, you immediately go back to "survivor" mode. This is something I really have had struggling dealing with (I feel sometimes as my blog is becoming my depressing thoughts, but that isn't what I intend!).

This leads me to my topic. What can I care about? What should I care about? What will I care about? What is the right thing to care about? These are all fair questions for myself, or any other cancer survivor to ask. When some things can be taken so fast from you, it really is hard to care, and to plan ahead. People my age tend to have a five year plan for there lives. How can you plan for that when your check ups are every three months? It i s a question I ask myself constantly.

It is a tough one to deal with, and I still don't have an answer for it, I wish I did. 

I care about some things a great deal still, but I am honestly scared to lose them, so it is tough to let myself back into that comfort zone again. It mostly involves people. I can deal with losing a career, starting a new career, some day to day things, but I worry when I think of the people I care about. I think this is the biggest thing I have learned. A lot of people depend on me for a variety of different things. I felt like I let them down when I got sick (I know I didn't, merely took a hiatus of sorts), and I am back at it taking care of things at home and at work.

Having cancer made me put up a lot of walls around myself from the world. I didn't want people to see how sick I had gotten, mainly because I cared. Everyone knew I was sick, but until you see it, and have someone explain it to you, it is hard for someone to understand.

I find it hard to care about myself sometimes. Putting everyone else first has become a normal event in my life. I want to be able to help people as much as I can now, especially since I leaned on some people very hard when I was sick. They deserve to have some time to put their feet up. For lack of a better term, the have earned it in my eyes. I am trying to care about myself more, but it is not so easy sometimes.

Knowing which things I need and want to care about may be a struggle for awhile, and I don't think I am alone in this one. But I want to get there. It certainly is something I care about.

Sunday, 6 January 2013

A post to my Friends and to my "Friends"

I find one of the biggest changes in a sick persons life, be it cancer or some other disease is it really shows who cares about you. This is sometimes good and sometimes bad, or maybe more appropriately, unexpected. This is where I am getting my title of this post.

To all of my Friends, and all of my "Friends":

As far as I know, cancer is not contagious.If you are a friend of mine, when I get sick, or have a time of need, you will stand by me. If you are  saying you are a "Friend" but leave me in my time of need, I would prefer you left before I got sick or needed you. If you leave beforehand, it leaves a lot more space for the people who will stand by me. It also saves me the stress of having people abandon me when I feel like the world is ending, like it did when I was diagnosed with cancer.

Don't get me wrong, I know not everyone feels they can deal with tremendous stress or pressure like cancer puts on a person. But at least tell me that, I would never have been so mad had I of known. Almost everyone who stopped talking to me, never did. Some people may decide they cannot deal with that stress. Some of us do not have that choice. I didn't want to deal with cancer, nor does anyone. I know I still hold a  a grudge to most of these people and I am having a hard time letting it go. You made me feel like I was a blight on the world, like I did something wrong, and I didn't. And please, please, please, stop talking to me now like nothing happened. You might be able to go back, but I can't. Don't send me birthday wishes, don't email me asking me how things are going, I have people that actually care about me. You may call yourself my "friend" but I don't.

I get the fact that I didn't tell everyone what I was going through. Some people just didn't know it was that bad. But when I finally could tell them (I didn't want everyone to know I was sick) many of them showed they cared. I don't mean these people, I never gave them the chance to be my friend during this time. And for that I apologize.

My real friends are amazing. They let me talk to them when I was sick, they acted like nothing was wrong when I needed that (even when things were clearly wrong). They let me talk about what happened still to this day. They do not begrudge me for it, and if anything, I should ask them more how they feel about it. It cannot be easy to watch someone you care about go through something like that. This is an experience I never had. We still hang out, I appreciate them more, it feels like we never missed a beat. To see them all when I got better made it that much more fun and special. One of my favorite events since I got better was CSC 2012 (a chemistry conference, boring I think not!) and we could hang out, and relax, and have a beer or two.

I hope people see these actions, both the people who care and the people who don't. I hope some people realize they did a "bad job". I know I wasn't perfect either, I am still far far from it. I make mistakes daily, I am not perfect with the relationships with the people I have in my life now. But I treasure the people who are understanding to the stress I have been under. I hope to become more like them.

Cancer has brought me new friends too. Not a way I would recommend to meet people but sometimes it happens like this. I have been fortunate enough to meet some really great people through the "Ride to Conquer Cancer", "Fuck Cancer", Twitter, and now this blog. You can tell these people care, they work hard with great drive, energy and enthusiasm. Even while the end goal is obvious (stopping cancer) but the path not so clear, they move ahead unfazed. I want to be more like them. I hope I can be better  to them. They deserve it.

To sum up, I guess we all have friends and have people who say they are. People who will be there, and people who will not. We never really know what we are made of until we have a truly life altering situation, be it health, career, family or something you would never think of. I am just glad to know that there are people out there who do care about me, who miss me when I am not there, and will be there. 

And I will be a friend and be there for them when they need them.

Wednesday, 2 January 2013

Surviving Survivorship, Getting by after treatment

This is a term I have heard thrown around quite often after being done cancer treatment. I get it now. People who have gone through cancer, be it surgery, radiation, chemo, supporter, care giver, whatever, the "battle" doesn't really end there. This can mean a variety of different things and problems and issues to lots of different people. I am just going to write about some of my experiences and a few things that maybe I didn't think of before.

One of the hardest things anyone listed above deals with is the thought of "going back". No one wants to, and you kind of just have to have some faith that you will be okay, that maybe things will be okay after all. This takes a huge stress toll on someone like me. I have always had a job, been able to go to school, and do the things I wanted to. I love that I can do most of those things again (as long as it doesn't involve running yet, still need to work on fixing my leg). The thought of losing those things again would be very difficult to deal with. I know this is a feeling shared by most people. Everyone who fights cancer is strong, I have no doubt in my mind that these are the toughest people I have ever met (as would be anyone fighting any disease), they could do it again, I could do it again, but I don't want to, the pain was very hard.

Being physically in pain for so long takes its toll too. A common problem is any cough, cold or pain I have, I get worried is "bad" and furthermore, when it isn't I hate being at home sick. Even for just a cold or something trivial. It can be hard.

Physical challenges I have felt I can deal with, not easily, but they are manageable. They have timelines associated with them, Mental recovery can be more challenging I find because they have no deadline. You never know what may set you off. You can be having a great day, and something reminds me of something bad and it ruins my day, or maybe part of it. Some people call this the "new normal" a term I hate, I just want regular normal back.

Being a survivor is tough. It can be physically and emotionally draining for many people. I get worn down really badly sometime, trying not to let it show. Quite honestly it can wear me down to the point of exhaustion. I know I am not alone in this. I try more and more to relax, but it can be hard.

Survivorship is an ongoing struggle, but I think it is getting to be something I can deal with, or at least will be able to deal with better over time. Just need to learn how to deal with it a bit better.