Thursday, February 28, 2019

They also serve who stand and wait... Or, in this case, watch.


Beware!  This post is a little longer than some...  But I feel the need to write down my feelings on it and the people that join us on our journey.

Is it really that hard to watch family member or friend with cancer? You better believe it is! It's a very hard, stressful, emotional time for everyone involved.  Not to mention being scary as hell. These times have been the scariest times of my life. 

What makes it so hard from the standpoint of family and friends? Think about it… When a person has cancer, everyone has the patient first and foremost on their minds. While we watch, most of us try to do anything we can to help make things easier for the patient. Just being there, listening to them, giving a million hugs and kisses, doing and getting things to help whoever it might be.

I have taken to calling the friends and family and caregivers that go along with us on our journey "Watchers." Why watchers?  Because that's about all we can do from that side of the diagnosis. Watch...

When a cancer diagnosis happens to a loved one or a friend, all you can do is be there for that person and help them in any way you can. All you can do is give of yourself and your time. Most of the rest of it is and doing what I have started calling the four W’s... Watching, waiting, worrying and wondering.

When you see and talk to others who might not be there as often as you are, what is the first thing you hear?

“How is so-and-so doing?”

They are concerned about the patient which is totally normal. One of the questions I have is, how often do the watchers get asked, “How are YOU doing?”

Don’t get me wrong, I know it happens, but not nearly often enough in my opinion. Yes, you almost always hear, “If you need anything, just let us know,” but rarely are the watchers asked how they truly are and what they might need. Those who watch are cancer warriors too, just in a slightly different division. They give of themselves in SO many ways; they take time off work and out of their lives, they use their own money and resources to get things the patient may want or need, they sometimes ignore their own medical issues or skip taking their medications or going for medical exams or treatments… They do about anything they can just to try to make sure they are there and available in case the cancer patient needs anything.

The patients themselves are busy being… well… the patient.  Doing their best fighting the hardest fight of their life, trying to get better. The medical staff gets to do things that can actually be seen. They are coming up with ideas and doing things for the patient. I know that may seem small to some but think about it from the perspective of a watcher. As watchers we have to hope what we’re doing is enough. Much of what we do doesn’t always have an immediate outcome that we can see or feel or realize. Yes, a “thank you” or a kiss and hug for something done is a response we can be seen and felt, and those are some of the best feelings you can have, but then it’s right back into the fight with the cancer beast and it seems quickly forgotten a lot of the time. Seems being the operative word.

As a person who has watched a lot, I have asked this question of myself so many times, “Is what I am doing even making a difference?”  Speaking from the position of a person with cancer, I can tell you that you are absolutely INDISPENSIBLE. What watchers do and what they bring to the situation are absolutely imperative. There is no way I can make a big enough deal out of this. The patient will cling to you and your love and your strength. With cancer, you can imagine yourself as being lost in a raging ocean. You’re trying to live and survive in the ocean by swimming or treading water or whatever else you can do to keep from going under. You are looking for absolutely anything to help keep yourself “afloat.” I can guarantee you the support and love and caring of a watcher, even your just physically being there, is like throwing them a life vest. When we feel like we can’t go on or might be giving in to depression or other deep, dark emotions, we will use YOUR power and strength and love to help keep our head above water. This is a 100% true fact. I’ve lived it.

Sometimes (in my case, most times) these strong and loving people don’t get told what they were doing and what they were sacrificing makes a difference. At least not up front… while it’s happening. A lot of the time the watchers will catch the brunt of the emotions and fear from the patient and it comes out in the form of being snapped at or yelled at or accused of things. The patient can seem mean or hurtful or even hateful. That’s not fair to the watchers, but it happens often. A watcher needs a very thick skin, a harder head than the patient, and they have to be partially deaf... You have to be willing to take all that lashing out and emotion and just let it all go in one ear and out the other. You’re the lightning rod sending the bolts harmlessly to the ground when they strike. Sometimes it is hard… beyond hard. It can end up hurting so much that at some point you have to take a step back and regroup. It takes a lot of work and energy to watch. It’s tiring on so many levels. It is mentally and emotionally draining to the point of sometimes seeing the watcher go home and break down. Personally, I HAD to have those breakdowns at home… away from the patient. Breaking down in front of them was completely taboo for me. I felt it gave the wrong impression. I want to put up a strong, positive front. Something the patient can cling to, so breaking down in front of them was not something I would ever consider doing. Again, this is just how I handled it. Your thinking may be totally different. There is no set of rules and regulations on this. It is all learn as you go. On the other hand, if there was good news, breaking down in front of the patient was more than allowed. You’re showing the relief of the good news and sharing the moment with them.

One thing I have discovered over the years is watchers are VERY strong.  A lot stronger than they might give themselves credit for.  99% of you keep coming keep coming back day after day, with the only saving thought being the hope you might be helping in some small way. Believe me when I say you are helping… More than that... You’re a necessity. It may not might feel like it at the time, but you are most definitely wanted and needed. More than you will ever know. Always. I’m sure somewhere down the line you will likely be told as much, but it never hurts to hear it from other sources too. It gooses you a little and gives you a bit more energy to go back for the next round.

Every person handles things in their own way, and those ways are custom-made for each person so it is most comfortable for them. That’s part of being human. The problem is cancer is not comfortable. Mentally, emotionally or physically. When you watch and support the patient in any way you can is when the four W’s I talked about earlier show up… Watching, waiting, wondering and worrying.  Most of the W’s are mental and emotional stress and can drain a person of energy very quickly.  Those kinds of stress can tire you out just as much, if not more than, physical stress. Many times, it takes longer to get mental and emotional strength back than it does to get physical strength and vitality back. Plus, if you let mental and emotional stress get too intense or last for too long, it can and will affect you physically. I have tried to come up with a comparison or an analogy for what it feels like from the mental and emotional standpoint. I can’t find one. I don’t think there is one. Everything I come up with doesn’t sound right or ends up being physical. I was going to liken it to sitting on a cactus… naked. Talk about some major pain, and in some of our most tender spots… but how can you mentally or emotionally sit on a cactus? So, you see my dilemma. It causes a lot of uncomfortableness (is that even a word? If not, I’m still using it. Get used to it!). We all handle the uncomfortableness in different ways. Looking back now and seeing things with my added age and experience, and the knowledge gained from both of those, I think the way I handled it from the watcher side was maybe 50-50, good to bad. I can look back now and say that. I ran and hid and refused to look thinking if I don’t see it or hear it, then it’s not real.  In some cases, things went incredibly south. I can feel bad about it all I want, but I can’t go back and change those things now. Hindsight is 20/20. There are no mulligans. That is who I was and how I handled it at the time, plus I have tried to correct the situations as best I could after the fact.

The bottom line is this... Those of us that watch are Cancer Warriors too. Always. We become Watcher Warriors. We are an integral part of the recovery process and we are absolutely needed. We might not know or see what we are doing is helpful at the time, but I guarantee you it is... and always will be. I stand and applaud anyone who takes the journey with those of us with cancer. I can never say enough about you and what you do.

To those that went through my journeys with me...  I will NEVER be able to truly repay you or make you understand what you meant to me then, and what you continue to mean to me today.  I love you all...  Starting with my wife Lea Ann, my family (including my friends) and everyone else who helped me. I will never ever forget... I hope that my fellow cancer patients will have the same feelings. Honestly, I am sure you all do... and I hope that the watcher warriors know it now too.

Thanks for reading along, my friends!

Wednesday, February 13, 2019

Five Years Ago - The Start of a Blog...

Hello everyone!

Thank you once again for reading this blog. With any luck at all, it has helped you our in some way when it comes to the journey with the beast... I can always hope.

The reason for this post is another anniversary.  Five years ago this week I decided to start the blog. It was a year post operation for me and in that year my view had changed and evolved quite a lot from what it was when I was going through it all. It was originally going to be just a personal journal... My thoughts and feelings and trying to work through all the changes and issues that come with cancer. The "new normal" as I am sure a lot of you may have heard over your journey. That's a very correct definition too.  It is a new normal. The old ways don't work as well any more, if they work at all. So you have to learn new tricks and behaviors. Not impossible by any stretch, but also not as easy as it may sound, at least in some cases.

As the journal went on, I shared it with a few people and they commented on the writing style and the fact that my journey might be able to help some people, both patients and their "watchers," better understand the journey. They said it felt like we were sitting at a table, having a drink and just chatting as friends do. That's when I decided to go public and turn the journal into a blog for anyone to see and read. Would anyone understand it? Maybe, especially if they are on the journey. Would anyone care to read it? Again, maybe. Depends on where they are in their journey and if they are open to other's ideas about it. Plus, who knew it was even there unless it is by a post on Facebook or word of mouth. Would it be able to help anyone if they did read it? Who knows. I still hope so.

Why do I have that hope? Mainly because of what happened on my journey. If you read the blog, you see that after my surgery I was a snapping turtle with my mouth tightly closed. No way was I going to talk about it or open up about the entire issue. No way at all. It had been cut out of me. It was gone. No need to talk about it any more. Move along. What I have found by talking with others is that type of thinking seems to be pretty common. If I don't talk about it or look at it or think about it, it didn't happen. The denial phase of the grief cycle. I talk about that whole thing in an earlier post too, so I won't rehash it here. The internal struggle I had about the whole communication thing stemmed from my parents, but not in a bad way.  Let me explain. My parents were married at the end of the Baby Boomer time frame, the early 1960's. They had certain ideas about marriage and ideals from the public and in the eyes of family and friends and the church, etc., about what it means to be married. Part of that is communication. They actually went to weekends and seminars about couples communication and keeping those lines open. They didn't have any marital issues that I knew of, but they always wanted to make sure they had open communication lines to each other. I saw that and how it worked. Then, when dad and mom were diagnosed with cancer, I saw them start support groups for that too. This was before the Internet, so they had meetings at our house or other member's houses every week. I was not included in them. Not because they shut me out, but because I was in my late teens and early 20's. Thats the general age where a human seems to think no one understands them or their problems. Especially their parents. At that age we just decide that WE know best. I was VERY much like that. Looking back now, I can see what I was able to get out of those meetings, even though I didn't go to them. Communication lines are like the pressure relief valve on a steam cooker. Keep the valve closed and after a while a seal will fail and the lid will pop off or the cooker could even explode. Without that valve, that release, we could blow up too. Talking and getting those feelings out is a release. You are not handling them alone anymore. You have others that know and can help and understand. You can get ideas for coping with issues, feelings, physical stuff...  everything. Opening the valve can be tricky. You can get burned, it can be loud, there are usually tears, but after that initial shock at the start of opening it, the pressure lessens. It really does help. So even though I wasn't involved in the meetings and groups, I saw what they did. What the meetings and the people in them meant to others and the kinship and friendships that were created because of them. I had hoped, and still do, that the blog would be an electronic version of that type of idea. All thanks to my forward thinking parents and their want and desire to communicate. Thank you Mom and Dad.  Just another reason I love and miss you both.

So, on this fifth anniversary of the starting of this blog, and over 42,000 page hits later, I can say that maybe, just maybe, I was able to help a person here or there. No matter how little of a help it may have been. The whole idea behind this was to show people that they don't have to go through this alone. The thoughts and feelings they are having, both as a patient and as a family member or friend, have happened to others. Maybe what I felt and how I handled those feelings would or will help someone in a similar situation. That was the entire idea. The underlying meaning of this whole thing is, "You are not alone," or, "You don't have to be alone." Some choose to be for their own reasons, and I respect that. Everyone copes in their own way. This helped me through some of the issues I was having with it, and still have some of to this day. The New Normal is a tough thing to get a handle on sometimes. But it is manageable. At least I think so.

After all that, you might ask why I quit making blog entries after a while. Mainly because I was into the New Normal at that point. I had a handle on it and it was just regular life again. Sure there are days that are better than others, and others that you wish you could forget, but generally it would have been writing about day-to-day life. I was afraid you would get bored with that, so I just stopped and let the blog stand on its own. It seems to be doing OK. When I remind people online about it, the usage spikes for a few days then back to pretty quiet. Like I said before, I am not in this to reach a million hits or for notoriety or fame... I just want to be able to help. To talk across that virtual table and let you, the readers, feel like someone knows and understands what you are going through. In a very personal and intimate way. No one know what it is like to go through this unless they have actually done it. They can read about it all they want, but until it happens to them, it is just words on a page or on a screen. My largest hope is that someday no one will understand the feelings here. Why would I wish that you ask? Because it would mean the NO ONE has gone through the cancer journey, so they have no way to understand it. I truly believe that time will come. Some day. Maybe not in my lifetime, but maybe in those of my children or grandkids. You know...  The ones I got extra time with and got to see and be with because I did go through the journey and was lucky enough to come out the other side. Not once, but three times now. That is not me trying to crow, that is me being proud of myself. That is hard for me too, but that is a whole other area of my brain that I haven't put in to a blog yet... Yikes.

Lastly, thank you for reading. I hope this makes some sense and that you weren't too bored with it. It's a big deal to me, and I wanted to share the feelings with you all too. Mostly because it was you that I wanted to reach. So thank you once again. I truly do appreciate your time. In the words of one of my favorite characters of all time...

May you all live long and prosper.