PATIENT NOTE : There is very little that is 'simple' about this process we call battling a disease. If anything my blog should reveal that it is an intense, internal experience that forces the cancer patient into many roles. However, as I have mentioned in a few posts, this experience is NOT undertaken in a vacuum, and has wide reaching effects on those that love us, first and foremost our spouses, children, parents and immediate family members. The post you find here today, is from my wife. The ONE person that, by all the most obvious of measures should have been my rock and confidant through all this, is the one person that I have in many ways hurt and disappointed the most, yet she is still here. I cannot express how important the past few months of healing have meant (I think I can speak for both of us here) to our relationship, and how this renewed effort to not only be husband and wife, but to be best friends, my first confidant, my first shoulder to cry on, my first smiling face to share the good things with, and the one person whose hugs at the beginning and the end of the day (and throughout) make it that much more important that I continue to fight this battle. SO, here without delay (and especially with no EDITING from me, is her story.) Thank you FIRST, and foremost to my Honey, By Best Friend, My Wife!!!
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With all due respect, I, as Scott’s long-suffering wife, would like to put my two cents in at this point. Though I am - by far – the less talkative of the pair of us, it is not really in my nature to allow Scott to hog the spotlight indefinitely. I hope you will not mind if I share some of what I have learned as the spouse of one battling cancer.
So with his permission, I will attempt to tell a little more of the story and what we have learned, from my perspective. Apologies in advance, as I am nowhere near as imaginative as he is, and my text may lack the metaphorical inventiveness that you may be used to, not to mention the vast number of apostrophes he puts out there.
As you might imagine, being Scott’s wife means that I get to experience a lot of…how to put it? I experience a lot of Scott-ness first-hand. And that can be good, bad and in-between, depending on the day or even the hour. However, these past two years have brought out the very best and worst in both of us, and a recent crisis has challenged us to finally come to a point where we must acknowledge exactly what our relationship stands for now and what we want out of whatever future we have left.
Obviously, if you have read this blog at all, you have a good idea of the suffering he has gone through. Re-reading his entries, I am reminded of the courageous battle he fought and continues to fight to this day. I cannot overstate enough how well he has dealt with the very heavy and unfair burdens placed upon him in this life.
However, there is one area where he (and I too) have really let down ourselves and each other, and that is communication. Many of the thoughts he has stated in this blog were unknown to me until the time I read them. Many of his ‘dark nights of the soul’ happened to him without my knowledge and involvement. Many of the coping mechanisms he used to deal with his pain were destructive to him, me, and to our marriage. (As I am sure he will freely admit now, having gone back and looked at everything with what we have discovered about each other recently.)
I can see where our breakdowns began – where he began to assume he knew what I was thinking and acted upon that (oftentimes incorrect) knowledge. Where he expected that I would have read his blog and been privy to the information contained within, while I was expecting him to come to me with his feelings. My actions, good and bad, began to take on meaning for him that may have been far from what I intended.
I don’t exempt myself from blame here – I knew he was angry, that he lashed out at times, and without asking myself if there was anything deeper going on, I retreated into a shell of hurt feelings. My attempts to reach out to him were minimal, and I let my anger and frustration get the better of me at times. I have not always been kind, or good, though you probably haven’t been told about all those times. Scott has very kindly forgiven me for these sins, but I have not really forgiven myself.
The problem, which I should have expressed to him at the outset, was that word. CANCER. If you knew how many times I have heard that word, expressed by some beloved family member who would eventually go on to die of that disease, you would know why it freezes me cold in terror and denial.
My mother, who managed to successfully fight off breast cancer, succumbed to Non-Hodgkin’s lymphoma nearly 5 years ago. This was, until recently, the most emotionally devastating event of my life. She was, to me, far too young at 63 to lose her life, and at 40, I was too young to live my life without her. I still miss her terribly and feel a great gaping hole in my life where she used to be.
There are other relatives I have lost: My stepmother, my aunt, my grandfather, my grandmother. The last one I mentioned was my mother’s mother, who died of a brain tumor when I was 8. I prayed and prayed for her recovery; when she died anyway I never prayed for anything ever again.
At any rate, I have known grief, great grief, and it is not an experience I care to repeat. So when I heard Scott’s diagnosis, my thoughts could be expressed in one word: NO. No, he does not have cancer again. No, it is not bad. No, he will not die. No, it is treatable. No, he will be fine. No, NO, NOOO!
And that was that. I shut down emotionally at the thought of surgery, chemo, radiation, scans and most of all, the unthinkable: what if treatment does not work? It was beyond me to imagine what that would be like.
Unfortunately, as a result of this, I began to seem, to the outside observer, rather cold-hearted, I suppose. I buried myself in the minutiae of life – work, chores, kids, and left him to fend for himself emotionally. Which was a mistake, and it led to more mistakes on both of our parts, and even to one that nearly killed our marriage.
Now, just as many things are beyond Scott’s control, many things are beyond mine. I have a job where, for many reasons, I work as much as I am needed, even on holidays, weekends, vacations. I don’t like it, but I do it unquestioningly. To me, it is necessary if I want to remain employed.
This feeling became even stronger in me as Scott suffered his employment challenges. I have a good job, insurance and a reliable weekly payday. I really, really do not want to jeopardize that. So, I don’t rock the boat at work, don’t blow assignments off no matter how tired I am, and end up working a lot of hours above and beyond the usual 40. It makes me physically and emotionally unavailable a lot of the time.
I also didn’t or wouldn’t try to control my adversity to conflict. I can bicker as well as Scott, and scream and shout as well, but I don’t like to. It is upsetting to me (and my digestive system) in a very real and painful sense. So when Scott, understandably, I suppose, began to show a lot more anger than normal, I took as much as I could before retreating into a cocoon of books, music, TV- anything to take my mind off our fights or our other problems.
I sensed the kids were dealing with more than they could take of our fights, so I felt it was better that I absented myself from the conflict at these times than forcing them to endure more of the same. I tried to spend time with them separately to compensate.
Now, I did eventually tell Scott about these feelings, but he wasn’t in a place to hear it, I guess. So breaks down communication. He started reading something totally unintended into my actions regarding all of the above and it had some extremely negative results.
One thing that goes along with grief, for me at least, is guilt. Not that vaguely shameful feeling you get when you forget to send a birthday card to your nephew, but a really terrible, crushing fury at yourself because you failed a loved one somehow, and now that they are dead, there is no way on earth to make up for that. I felt that way with my mother. I decided that I failed her in her last few months alive. I missed my last Mothers’ Day with her because I was too tired to visit her. I must have been in such denial because it never once occurred to me –consciously, anyway - that it could be her last. I called her that day, and she was all alone and in agony from the pain she was going through. Had I been there, I could have helped, but I selfishly excused myself. When she was dying, I managed to get a few days off to spend with her, but on her last day, not knowing, I left her to go back to Toledo to take care of a few things (at work, of course) and that night, she died. As she was passing, she saw three of her four children in the room with her. I was in another state, waiting for the terrible phone call, knowing how terribly I had miscalculated by leaving that day. Again, denial was in play: I thought I had more time to take care of my things, that she would wait for me. What arrogance.
I have since come to terms with that, thanks to therapy, but it still haunts me. But for some reason, I allowed myself to put up the same blinders when it came to Scott’s condition. I could let him deal with his problems – he didn’t seem to want to share them with me anyway – and then he would get better and things could go back to normal.
Time has proven that this was a pretty stupid approach, not that I rationally planned for our relationship to go that way. But the bridge between us started to crumble on both sides and neither one of us bothered to make any attempt to rebuild.
If this entry has any point at all, it is to stress that open and honest communication is vital, especially in times like these. It should be part of any life, any relationship, of course, but when the waters turn rough and the ship seems likely to run aground or off course, that is the worst possible times for the metaphorical crew to decide on separate courses of action to right the vessel and get back on course.
I suppose I have more than one point, and it is for those who might be the principals in the fight against a disease like cancer: Don’t try to fight alone.
Whether you are suffering from mundane stresses and problems or extreme duress and distress, please remember the people in your life need to know how you are feeling every day. One of the most damaging things to our relationship was assumption. He would assume he knew exactly how I felt. I thought the same about him. But we could not have been more wrong about each other.
While we have taken steps to fix these vast information gaps, it is a daily struggle to share both good and bad feelings. Though at one point it came naturally, now it is an effort to express those inner thoughts. Those muscles have atrophied, and must be worked out every day to strengthen them. It is our hope that one day the muscle memory will return and it will be as natural as it ever was.
The hardest thing to express, or even acknowledge, is fear. He is, quite naturally, terrified of the worst possible outcome. So am I. So much so that it quite literally stops me in my tracks sometimes. I struggle mightily to put it out of my head when I must concentrate on work or be with the kids, but it is always there for me as well as him. Not acknowledging that to ourselves and together did not make it go away, it only intensified the loneliness we both felt.
One thing that you will notice in Scott’s blog is that he writes in the first person, mostly, giving you the Scott’s-eye view of his struggles and suffering. This is quite natural and I wouldn’t expect any tale to be told differently. However, one thing Scott has done though, is to live inside his own head a bit too much. No man is an island, they say, and no one battling cancer, at least no one who lives with his or her family, suffers entirely alone.
While Scott must bear the brunt of the pain and unpleasantness of the treatment and surgery, the terror and fears of the future, his sons and I have suffered nearly at much, if at one remove. I say this not to garner sympathy for myself, though as I am sure other people in our situation will verify, when one person in the family battles cancer, that seems to become the only thing outsiders care about any more. The only question I seem to be asked these days is ‘How’s Scott?’ And that’s okay. It IS a big deal. I am glad people care about him and am happy to inform them as to his progress. But sometimes, the selfish part of me wonders if anyone cares at all how I am, how the boys are. Now that is a bit of feeling sorry for myself, so don’t feel like you have to ask me constantly how I am doing. But I have known other people in my shoes and they experienced the same feelings.
I do wish, however, and so does Scott now, that HE had inquired a bit more into my mental state. And I wish that I had not waited for him to ask. Because he did not know how I was affected, he assumed I was not affected. I assumed he only cared about himself, not us. And that caused so many problems for us.
Cancer is a community disaster. A shared catastrophe. (I am sure this is true of all major illnesses.) It can’t just affect one person. Scott will agree that he kept far too many things to himself during the last year or so, not realizing the web between us, between our families and even our friends, meant that at no time was he suffering totally alone. I wish I could go back a year or two and amend some of the mistakes I made, and we made, so that we had not let the massive wall of misunderstanding come between us. I hope anyone reading this or who might know us could learn from the mistakes we made.
Recently, we have begun anew, trying to fix all the gaping holes in our communication. I found, and he did, that while alone, we shared a great many of the same fears and problems, though we never bothered to share them with each other. Finally discussing those fears – acknowledging the hulking specters lurking half-hidden in the room – revealed just how much common ground we shared. It is a shame that it took arriving at a crisis point to prompt this openness.
These conversations have proved extremely helpful to me, and to him, I hope. Discussing the Big Bad does not make that most frightening thing go away, but I do believe very strongly that those terrors we both face are lessened when we battle them as a team. It is not easy, but has been so rewarding.
I hope not to sound arrogant – it may be that we are the most clueless souls on the planet and this lesson is very obvious to everyone but us. However, if there is anyone in your life that you could stand to be more open with, to express more to, don’t wait until you, like us, reach a crisis point and nearly break your bond apart. Go ahead and say what you are feeling – as honestly and politely as you can. You may open up some wonderful, albeit painful, avenues of expression and end up with a better relationship than you had before.
Thanks once again to Scott, for allowing me to type all over his blog. Also, I would like to thank his readers, friends and supporters. You mean as much to me as you do to him, and I am very grateful for your presence in his life and ours.
Cheryl Lightfoot
