I Thought it Got Easier?

"Things get easier, you will get less stressed with each check up" - Everyone who I talked to who had cancer and is in remission

One of the hardest things I have dealt with since finishing cancer treatment is the growing sense of fear that everything will be taken from me again.

Fear of recurrance is a real issue that cancer patients deal with, and a lot of the time, I really feel like most people don't really understand that too well. I get the fact that most people want to be done with cancer "things" when treatment is over, and honestly the thought of going back is hard in everyone. I see the point of view of both family and care givers that it really took a toll on their lives. It really does take a toll.

However, for me, that toll seems to grow over time. It seems to get harder and harder with each check up. With each three month window life seems to get harder, more complicated, more difficult, and I am struggling to find the proper answers for things, or any "real" solution. 

I struggle more and more with "life" decisions. Where to work, what to do with money, where to live, etc. With every check up, I think "well I had those three months, it was a good ride while it lasted". Don't get me wrong, I am confident in my doctors, I am confident that they did everything possible for me and would do anything for me. I see all the time that these doctors at the cancer agency do their best to save lives. They are real heros. but it doesnt make me any less stressed out. Recurrance is  real, and I see it way too often. It makes me incredibly sad, and somedays, I feel incredibly helpless. I just want to live life and be happy. Make a difference, and continue on my way.

I don't know what to make of it these days. I still can manage to put it aside and go to work, and do my job. Get the bills paid, get things done. But it has gotten harder and harder with each check up. I know life isn't fair. I know, if it was, i wouldn't see children every time I go to the cancer agency. I just wish it actually did get easier. 

Not just for me, but for everyone in my situation.

21 Months

21 Months ago was my last day of radiation therapy.

It completed about a years worth of cancer treatments for Ewings Sarcoma that was in my leg and hip. I don't usually like to acknowledge that it was in my hip too, as it was only a small amount was there, but it was there nonetheless. 

This past week, I had my regular three month check up and it all went fine (thankfully). I have had several of these now and although the stress doesn't go away, this one seemed a little easier. Not because I was less worried about recurrence but more because I was so tired of worrying. I was completely exhausted.

For my next check up, 24 months, things get a little more exciting. This last appointment I had the conversation that was inevitable. The conversation that I knew was coming.

Now that you will be two years out, we need to start checking what damage the chemo drugs may have done.

This was the conversation we had to have. Chemotherapy kills, it is what it is built to do. It is aggressive because it has to be, and I am truly thankful that it is. It extended my life. I would most likely be dead today if this did not exist.

My next check up, is now far more complicated. I will have a full set of tests again, the regulars such as MRI, CT scans and blood work, X-rays and that weird tapping thing doctors do on your chest. However this time I get a little more. Examining areas that were fine before through CT. Something called an Echo Cardiogram which will look to see if the doxyrubicin caused damage to my heart. Seeing if I am tired, a possible cause being Leukemia (cancer cures can cause cancer, a fact I knew too well) and seeing if I am losing feeling in my fingers and toes.

I knew this all was coming, I just wasn't sure when we start to think about these things and it has left me surprisingly calm. I knew this was coming. I did my worrying about these things a long time ago. I have come to accept the inevitability that cancer treatment is very hard on someones body and to fully escape some of these long term effects I would have to be quite lucky.

I still worry about recurrence, I have these concerns too. It honestly has left me quite apathetic about many things in life. But it also motivates me to keep up the fight and keep helping to work towards cures by raising money. I have recently got my new web page almost done (www.conquercancer.ca/goto/eamonn) for this years "Ride to Conquer Cancer". I know, for me, many of these side effects will be unavoidable, however, I am optimistic that working to raise money will keep others from going through what I have/am.

I hope in another 21 months we are better along then we are now.

Some Long Weeks Ahead...

So Fall has begun and things are picking up at the University that I work at as is typical time of year. It really makes me miss the days of hanging around campus and going to classes and all the fun stuff (and stress) that go along with that). 

Lately, I have been pretty stressed with another check up coming up in a few weeks (21 months but who is counting?) and trying to find ways of dealing with all the stress that goes along with it. I have come to find that each check up seems stressful for a different reason, so using coping techniques from the previous time, doesn't really always work that well. I am less stressed about going into work around these times, when I first went back to work, my anxiety would be so bad that I wouldn't be able to do anything at work, but thankfully those days are gone. 

I have been able to accept the fact that these weeks leading up to check ups are very long, and very stressful times. I really am trying my best to manage and focus to get through these instances. It can be personally frustrating that I keep getting worked up, and I know this stress that is a result on me is not only hard on myself, but hard on the people around me. I am always thankful for the things people have done for me when I went through cancer. It wasn't fair to them to have to deal with these things, but then again, it wasn't fair to me either. 

Recently, I have found a good counselor who was really good to talk to and (finally) have some useful advice. I am no pro when it comes to dealing with cancer related stress, I know I have it, but can't do a lot about it (neither can the people around me) because I don't know how to fix things.This new one has been very constructive with giving me ideas and supporting my ideas on how to take care of myself and help get past these challenges. It has been quite refreshing, and I have been very thankful for this opportunity.

The stress has been tough to be honest. It has lead me to really down days, being upset at work, not doing things I enjoy, and not working on my writing (obvious?). The harsh realities as they set in are tough to deal with. Things like home ownership, health and life insurance, family planning, and investing all have become much more complicated due to my health concerns. That's tough because many of these issues are tough enough on their own. I hate being stuck in these situations, and they make the weeks even longer.

I am not quite sure what my next move is. Life is hard and I know I am making it harder for many of the people around me as a result of all these concerns and worries and whatever. I have learned that people don't always get what I go through, and that is fine because I don't get what others go through. But I am trying. I do want these long weeks to not be a recurring problem.

Long Term Effects

There are many long term side effects of cancer treatment and they are different for every patient out there. Many are obvious such as scars and the likes, but many are much less obvious.

For me, I have several long term side effects and things that really, sadly, doesn't let one forget easily.

I have the physical scars as mentioned. I have a ten inch scar on my right leg with a big indent from surgery. Above this, I have an area of extremely smooth and hairless skin from radiation. These long lasting things don't bother me so much, they are easy to hide and keep away from the outside world.

Other things are much less obvious. Chemo sure did a number on my veins and arteries. During chemo I could not extend my arms fully without immense pain as a result of the scaring it did to them. This is healing over time, however I still cannot extend fully without tightness. This is something I deal with all the time. I also really hate getting bloodwork done as well because as a result of these scars, my veins are very tough to poke through. This can make pulling blood to be a painful task.

As a result of  surgery, I can't really run very well, I am not as fast as i used to be (not that I would ever call myself "fast"), and it has given out on me from time to time, with stiffness in my hip from radiation also being a problem. I have no feeling still on the inside of my right leg either.

My blood and bones are still recovering from chemo. I remember quite vividly my doctor telling me it will take about five years for that stuff to get back to normal too.

There are plenty of mental scars too. These things I find to be the worst long lasting side effects. The biggest long term effect of cancer for me, is fear. Fear of recurrence, fear of going back to the chemo ward and reliving all those painful memories and times, and fear of maybe not getting through it next time.there is a lot of guilt too, for the pain I have brought to others. This never seems to go away.

It is enough to wear someone out completely that's for sure, and many days recently I feel worn out to the bone. It isn't great but I am doing what I can to get through it. I know it is tough for everyone around me, and I know it makes me a bit of a burden sometimes (more than sometimes?) so I try my best to deal with it on my own. It can be tough, and although many of these side effects will eventually go away, I am certain they won't go away soon enough.

Distractions

Lately, I have become pretty bad at neglecting the blog. Been overly distracted it seems. Not sure why overall but a few things have cropped up.

It is getting to be three month check up time again. Probably the most common time that I get stressed about cancer things. Waiting to go in for tests and waiting to go in to have my oncologist give me "the news". So far they have all been good news but it is never less stressful for me. I know it is hard on Sara too, which makes me feel a bit bad about. She never signed on for this but has been a trooper and a great supporter. I know how hard it is on her too, and unfair on her, she has been really strong though. Impressive stuff.

I guess this has been highlighted further these days by the fact that I have heard of multiple people that I know or have met or talked to through social media and were in remission, no longer are. It is the biggest fear anyone who has gone through cancer could have. It just goes to highlight the fact that no matter how far along you are, and how much people want you to be "over it" and not worry about cancer, that many of these fears are completely justified by cancer survivors. I understand you don't want them to dominate your life, which I don't think I do, but it is nice to have them acknowledged as a real fear.

This stress has kind of built up over the last while, and I worry about the future and decisions I have made in the past. It has made me distracted, and honestly quite irritable, and this is no ones "fault", just something I have been dealing with. It has lead me to be quite disconnected sometimes, and I know this is not a good thing. I have discussed it with Sara and am looking at some more counseling tomorrow which I really hope will help calm the storm going on in my head.I have said it before, but no one wants to be past this more than me, but I still need time, and still need a little patience. I never really took a lot of time to deal with what happened to me, and it shows up from time to time in a negative way.

One thing is for sure though, I will continue to work away at it. Get these distractions gone, get reconnected with life, and get things back on track in a positive way!

Lumps, Bumps, Bruises and Being Mentally Tough

One of the hardest thing about being a cancer patient and/or survivor if the bumpyness of the human body. 

What do I mean by this? For most people, every person really, their body is filled with inconsistencies. Your left hand is not exactly like the right, same goes with legs and same goes with everything. Normally this isn't really a concern for most people. But as anyone with cancer will tell you, you get no so excited about this bumpyness sometimes.  It takes a certain level of mental toughness and always being "on" that can be hard to explain and can really wear on a person.

Personally I have had many experiences during and since completion of treatment that I fell into this hole. Many days, I would find some sort of bump or irregularity that leads me to believe that something may be wrong (so far they haven't which is great). I had cancer in my right leg. Lots of surgery, lots of radiation and lots of chemo lead to an odd system going over there. Recently, I poked around and found some oddness on my left leg. Also stressful, it is probably nothing but I don't know that. Things like this are stressful because they have probably been there for ever and when I compare to my right leg, well it doesn't feel the same.

Some days I deal with these lumps or bumps fine. Some days I poke and prod, pretending I know what I am doing, trying to figure out what it is and convince myself that it is all fine. Usually I end up bruising myself and it becoming swollen and painful. Those days I would not say I am particularly mentally tough. It can be made harder and more stressful when you hear about a friend or colleague getting cancer for the first, or second or however many times.

I am happy days where I can just shrug things off but they aren't as common as I would like, and they can make some days harder. Some days I tell myself "well I have a check up in a month I will be fine until then". I have been very good about trying to decide whether or not I need to go see a GP or my oncologist, but it can be tough some days. It is not an easy thing.

I believe almost every cancer patient or survivor goes through something like this. The fact that so many deal with it "gracefully" and can still get through their day, go to school or work, hang out relax, and take care of their families and loved ones is really a testament to how strong and mentally tough cancer survivors and patients are. Obviously, we are not all perfect on every day, but I really believe that with all the added weight on a person that adds, it is truly impressive.

So with every lump and bump I get, it seems for now at least I will continue to bruise myself. And stay as strong as I can.

A Bit oif Time to Relax and Get Out

Over the last few weeks I have been doing a fair amount of traveling and when I can getting some down time (hence the slowness of getting some of these posts up!) but I have always enjoyed getting out and about and seeing different parts of the world.

Over the last few weeks I have had the opportunity to travel through all three maritime provinces in Canada (Nova Scotia, New Brunswick and Prince Edward Island) and it really has been a lot of fun, and I have had the great experiences of meeting a lot of really great people along the way.

I spent some time in PEI for a job interview, and met a lot of great people, and then went to PEI, NS and NB with my wife Sara celebrating our first wedding anniversary and had a really great time seeing and experiencing a lot of things I haven't really had the opportunity to do or see before.

What does this have to do with cancer you may ask? When I was sick, I simply could not get around. I didn't do much traveling before but I had the unwavering desire to get out of my house. I was very work orientated and would always put travel off for an undetermined later date. I put off seeing the world. I think that was a mistake and something I won't soon give up.

I was able to travel a bit when I was sick. And a bit is not an understatement. My "big trips" were going from Vancouver to Victoria BC (mainly because they were close and there was a regional cancer centre there too, safe destinations in case anything happened!). And although they were great, most of the time I felt trapped because I couldn't do things, couldn't eat, couldn't really experience the area I was going to as you would want to.

I used to find travel stressful, but now, I view it as a major time to relax. Even if I am tired when traveling (which still happens, not 100% from cancer treatments quite yet!) it is nice to get out. I guess that is one thing that I learned when I had cancer. Even when things that used to stress me out come up again, I don't get nearly as stressed out, and travel and getting out is one of those big things.

I think todays post turned in to a bit of a ramble and maybe not the most succinct thing I have ever written. But it was a sunny day, I was sitting on my parents deck. And it was just nice to be able to get out and look back on the last week a little bit, and probably appreciate it a little more than normal.