When I compare my mindset now with how I was each time I was told my disease had recurred, I am amazed at how I have come to accept my lot. I still have crappy days when I just want to yell and scream at the world, but most of the time I just muddle along, working, playing and living to the best of my ability. Over the years I have learnt some wonderful psychological tools that have helped me. I have also dealt with some stupid ideas, that are as fanciful as a wave of a magical wand.
In 2012, two years after having a hysterectomy to remove an endometrial stromal sarcoma, I was told that my paraganglioma had recurred and over half a dozen tumours were spread throughout my body. One was attached to the vagus nerve in my neck, one in my abdomen, and a heap in my pelvis. Although it was the smallest at 6mm, the one in my neck terrified me the most. It has the potential to cut off the parasympathetic nerves that work with my heart and digestive system. Surgery is not an option at the moment as it is too small to find without causing major damage.
With my genetic mutation (SDHB) and multiple recurring paraganglioma it is only a matter of time before my tumours cause problems. We assume they have not metastasized yet, as they have not spread to my organs or lymph system. So, the myriad of bright spots that show up on my Gallium (68Ga) DOTA-TATE scans are probably primary tumours. They are all attached to nerves (being a nervous system tumour) and at different times put pressure on my nerves that causes problems ranging from mild neuropathy to excruciating sciatic pain. The combination of the SDHB mutation and having growing paraganglioma tumours is like living with a time bomb. No longer able to count on surgery or radiation as treatment options, I am left with the only option of watching and waiting. Any treatment for me now is palliative.
So I worried......
Until now I had not spent a great deal of time with psychologists. I didn't feel I needed them. I did go to Counsellors when I felt I needed to "off load", but generally I felt I was coping. Now, I was being told that I had a heap of tumours that could not be treated or cured. All I could think about was I now had multiple time bombs that could metastasize at any minute and I would be dead. I spent most of my day fighting back tears and trying to appear normal, which wasn't always easy with this constant dialogue going over and over in my head. I knew that this was not healthy and overdramatic.... but that did not stop me feeling that way. I didn't know how to deal with this situation.
I went to a Counsellor and he talked about positive thinking and thinking happy thoughts. He said that I should swap negative thoughts with positive ones. It was as easy as that! While I was polite to his face, inside I swore at him, yelling and screaming that I AM A POSITIVE PERSON! IT IS NOT THAT EASY! THINKING HAPPY THOUGHTS IS NOT GOING TO TAKE AWAY THIS PAIN AND THIS DEATH SENTENCE! HOW DARE YOU SIT THERE AND TELL ME IT IS 'EASY'!
While I do believe in being positive, it is simplistic and does not make a negative diagnosis go away. It does not help people deal with issues they are facing. It DOES NOT CURE CANCER! In fact it does not cure anything. It is like putting a pretty cloth over a pile of rubbish. The rubbish is still there, decaying and causing health issues. covering it up will not make it go away. Telling people that happy thoughts cure disease only sets people up for failure and feelings of guilt. I do believe that positive thinking helps my overall prognosis. It has also helped me heal quickly from surgery and radiation treatment. But, it will not cure my disease.
So, I went back to the drawing board. I saw my family doctor for a referral to a psychologist and another Mental Health plan. (In Australia, Mental Health plans allow you to have 8 free psychologist visits.) My psychologist listened to my fears and my inability to cope with them. I raved about how I can't see the good in having a degenerative disease, and burying my worries under "happy thoughts" is not going to help! It just made me feel like a failure as I could not do it.
My relief was immense when she said that positive thoughts don't work if there is an issue (like chronic health problems) which cannot be changed mentally. She told me about "Acceptance therapy" and how we needed to work on accepting the diagnosis. She listed a few tools that she was going to spend time teaching me.
The first of these practical, useful tools is the Worry Time.
The Worry Time
My first task was to learn to schedule some Worry Time each day. This involved me setting aside an hour or so each day specifically for worrying about my diagnosis. During the day I would make notes about things that worried me, or thoughts that cropped up. These notes would then be put aside to be re-looked at during my allotted time. I had to be firm with myself; not an easy task when you are in the middle of feeling sorry for yourself. I had to tell myself, "Not now. You can worry about this later."
When my appointed Worry Time arrived, I would sit down with my notes and go through them. For each worry I would ask, "What can I do about this?", "What can others (e.g. doctors) do about this?", "Can I get more information to help me deal with this?". Basically I tried to see if it was rational to try to solve the problem. If it wasn't, I would look at the fact that I had to live with it, whatever it was. I had to learn to accept it.... but that came later.
Over the days and weeks of practicing this I found that I became better at it. Some days, I would still just melt into a puddle of misery, but most of the time, I was able to postpone my worries and deal with them later. In the beginning, my Worry Time was about an hour or two. On weekends, I allowed myself the luxury of having as long as I felt I needed. During this time I would Google worst case scenarios, as well as treatments and cures. I would spend ages on my support group reading and re-reading the stories of others and see if I could catch a glimpse of something that could help me.
Over the next few months, I noticed how easy it became to postpone my worry. I also noticed how, by facing my worries, and not trying to cover them up or block them, they become less. Excitingly, I now spend very little time on worrying. Occasionally, I still have bad days... but they are becoming few and far between. I am learning to use other tools as well. It has been a slow process. It is ongoing. I don't think I could ever stop the mental exercises I do, but I am much happier than I was at the start and I am able to deal with my ongoing health issues easier and with much less angst.
Mental Health Coach
There are many different links to different ways of doing Worry Time. While I find it easier to have a psychologist to act as a coach, some people may be strong enough to do these exercises on their own, without support. However, I do strongly suggest that, if you have been diagnosed with a degenerative disease it is worth investing some time with a mental health coach.
We know how much easier it can be to reach our fitness goals when we have a coach or personal trainer. Even the best sports people have trainers/coaches. It makes sense that if we want to become mentally fit, using a coach would be a benefit. A Mental health coach may be a counsellor, a psychiatrist or a psychologist. With all of the people you employ to help you on your medical journey, you will find some that do not suit you. Sometimes, it is a matter of shopping around. Keep looking until you find a person who you feel "gets you". This is important. If you feel like you are not connecting with your mental health coach, you are just your wasting money and time.
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