Digging a Hole with my Brain
This is not unexpected. Just about everyone that finishes treatment has head noise that sounds something like this:
“I want to celebrate but I don’t feel like it. I’m still recovering from treatment. There’s the sweats and metal mouth and the peripheral neuropathy thanks to the chemotherapy, there’s the scar and the numbness and the strange electric-like pulses through my breast thanks to the surgery, and there’s the skin damage and fatigue caused by the radiation. But it’s more than that.
There’s a sense of not being sure who I am any more. Cancer walks into the middle of your game and throws everything up in the air. It steals the board and kicks the table over. There’s no point trying to pick up where you left off. It’s going to take a new game.
I want to celebrate but some part of me whispers caution.
What if it comes back?
What if it’s already back and I don’t know it yet? Does thinking that mean it’s true? Is that my intuition talking and warning me that it’s back?
Does even having the thought that it might come back mean that I’ve reduced my chances of staying well? Can I think myself sick?
Isn’t it the case that, with hindsight, I recognised something was wrong in the months before I was diagnosed. Makes sense. It’s my body. I live in it. If something is wrong with it then some part of me must know that. Right?
Right?
Maybe I should have a scan. Just to be sure. Just to be safe. But then I’ll be right back here in a couple of weeks, still uncertain. There really is a limit to how many scans you can safely have.
I want to celebrate but celebration means letting go of all the really good things associated with being a cancer patient. It’s not a great way to be the centre of attention and the focus of so much love, but there you go. It is. The people that love me have gone out of their way to take really good care of me. I have largely been relieved of any regular chores. It’s been lovely….well, apart from the cancer and the side effects.
I want to celebrate but maybe this is just the calm before the storm. Maybe this is just the support act for the main event. Maybe this was just to get me ready for the highly aggressive metastasising cancer that is yet to come. …”
And so on….
I call this ‘digging a hole with my brain’. You can see why. Here’s what I do about it. I write it down and then I rewrite it. Here’s what I get:
“Everyone has cancer all the time. I know that now. We don’t all have terminal cancer, or even tumours, but we all have the mutated cells with the potential to become cancer swimming around in our bodies all the time. Will I get cancer again? I already have it. (I know this doesn’t sound very positive to some people but it’s strangely reassuring to me). The question is whether any of those cells will trick my body into providing a blood supply. I know that there are lots of things I can do to help prevent that from happening. They include eating a diet that focuses on lots of organic fruit and vegetables with some organic meat and a lot less processed food. I can also maintain my commitment to not drinking, manage my stress, keep up my yoga and increase my meditation. I can focus on being happy as a genuine strategy for improving my health because I know it’s not just about my mental health but my physical health as well; happy people have better immune systems, longer lives and lives worth living.
Concerns about the cancer returning are normal and expected. I don’t need to focus on them. I can acknowledge them in the same way that I notice the weather. It is what it is. Work with it. Don’t define it as ‘good’ or ‘bad’ it’s just weather. So when the doom and gloom hits me I should just look at it like a passing storm cloud and let it float away.
Yes, I’m not sure who I am any more but there’s good in that. I’ve broken some old habits. I’ve lost some not-so-good friends and found some new ones. I’ve sat quietly with death, holding hands, until we were comfortable with each other. This is a great opportunity to redefine who I am, what I value and what’s going to be important for me as I head into the future. I’ve had great help from the psychologist at the Oncology Clinic and I now feel very clear about what kind of life I want, what really matters to me and what sorts of activities I want to be involved in.
It is hard to let go of being the centre of attention but it’s also great to let someone else take the spotlight and to be the one doing the caring for a change. My husband has surgery coming up. It’s an elective treatment designed to reduce his snoring and apnea and he postponed it when I was diagnosed. It will be an opportunity for me to return a fraction of the care he’s shown me. This is how families work. This is how close relationships work. We take turns. I’ve had mine and now it’s going to be great to help other people. I know from the work I’ve done on what I value that I really enjoy helping people. It’s a big part of who I am.
When it comes right down to it I need to face the possibility that the cancer might come back and that it’s okay to have that thought. For all the fans of ‘The Secret’ and other beliefs around manifesting what you imagine, there is absolutely no basis for believing that my attitude or my beliefs will either prevent or cause cancer. This dangerous school of thinking essentially blames everyone for their own diseases. I know that a positive attitude helps my immune system and makes me nicer to be around, but it won’t prevent cancer, any more than having a negative thought will cause it. For proof, just ask people that work with cancer patients. The truth is that some relentlessly positive people die while some depressingly pessimistic people recover. This is good news. It means I don’t need to beat myself up, ever, over anything, and particularly not over whether or not my thinking might kill me. It won’t.
Yes, the cancer might come back, and it might not. It’s not true that there’s nothing I can do about that and I’m going to do what I can to improve and preserve my health, but it might come back anyway. If that happens I will have the comfort of knowing I did what I could to prevent it (and this was a big part of giving up drinking) and the knowledge that I’ve put my body in the best possible position to fight it again. I don’t want to fight it again. I will if I have to. I also won’t worry about that because worry is just using what might be to suck the joy out of what might be!
This is life. Unpredictable. Chaotic. Messy and wonderful. Life. It sure beats the alternative.”
And so on…..
I’ve decided that it’s okay to move into recovery without a big celebration. While it is a transition from active treatment to recovery, the journey to good health isn’t over. I’m going to need some time to rebuild my strength and to recover from treatment. I’m going to feel better as time slides past and I reach the two year mark, and the three year mark, and the five year mark.
I like the idea of declaring myself well at some point in the future and celebrating then. When I’m feeling strong and vital and healthy again I’m going to feel like a party. It’s okay not to feel like one now.
Instead I’m going to focus on resting. One week of serious resting and then I start to slowly, slowly rebuild. This is the new version of me. In some ways very like the old version of me and in other ways completely and utterly changed. I am stronger than I knew. I am wiser for the experience. I am greatly loved.
I am alive.
reblogged from http://positive3neg.wordpress.com
Comments
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For someone who has just finished treatment, you have put into words exactly how I am feeling. Thank you, thank you, thank you.
All the best for the future. Xx0 -
I have just finished treatment too and it's like your reading my mind, those are my thoughts exactly. I will just keep plugging away at it and eventually I will convince myself that everything will be alright! You are so clever with your words and writing
. XxxTashie 0 -
I also hope that the Beacon picks up this story.Or any of your stories for that matter ! You are so talented! Thanks again.xoxRobyn0
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All of these thoughts that you talk about are already floating around my mind and I'm 3 taxols and radiation away from finishing my treatment for TNBC.
I keep telling myself that it is what it is and for me the best way to cope is to compartmentalise the different phases. SURGERY, GENE TEST, AC, TAXOL, RADIATION. My friends and family want to celebrate the end of treatment because it's a line drawn for them, a symbol that it's over, but for me and others like me it is far far from over. Because, after treatment will come the anxious battles you have described so perfectly. A feeling if being let go from the safety net of appointments, the caring of the chemo nurses and I'm sure the radio nurses which I'm yet to experience. A feeling of not actively doing anything anymore.
But I also think about the opposite side to the coin...soon I'll be free, free from scheduling and coping with the side effects, of trying to keep working in spite of the fatigue, and ultimately free to do anything I want to do! You are completely correct in saying that there is a part of me, the old me that I still recognise, but also now a new me, one that doesn't have to do anything she doesn't want to do. I don't want to waste a moment of my time or energy on things or people that don't matter. I've learned that my time and energy are so so precious and they are now reserved for the things that I deem are worthy of them. I cannot tell you how wonderful it was to take my 13 y.o. To the hairdressers last week to get her hair coloured for the first time! Something so everyday but to me it was a very special moment! I apologise I think I am rambling!
I so appreciate your post! It helps me to believe that these are very normal responses to extraordinarily abnormal situations!
I wish you all the very very best in your recovery!
Love, Maryanne x0
