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Strategies for Coping
Little is known as to what causes these lesions. At present the majority of people presenting with a pineal cyst are told the cyst is not causing their symptoms. This leaves patients with the difficult decision as to what to do next! Some patients like myself elect to have surgery and for some patients it about managing symptoms.
This article is in no way advocating for surgery as everyone is different and what may be right for one patient may not be right for another. However I do want to share the strategies I used for coping and for making my difficult decision.
Strategy 1. Make two listsWithin a few weeks of being diagnosed with a pineal cyst I was offered surgery. My head was in a spin and I felt I had no control over what was happening to me. One of my old work colleagues has a saying; Q. How do you eat an elephant? A. One bite at a time!
With this in mind I set out to make two lists to breakdown all of my questions, feelings and possible outcomes to the situation I found myself in. I started with two pieces of paper, one A1 size and the other A4 in size. I listed all of the things in my control on the large piece of paper and on the smaller one I wrote down all the things I couldn’t control!
By writing everything down it helped me to externalise what I was feeling and helped me to organise my thoughts. By writing my lists down in bullet point format I had some very easy manageable directives I could follow. If I wrote down a negative feeling I would make some notes next to it as to how I might change or understand that feeling.
Example• Thought - I’m scared of the unknown – Action Step - Talk to other patients that have had surgery.• Thought - I’m scared of being a burden to my family – Action Step - Ask family members how they feel about helping after surgery and give them an out if it is too much for them. It is far better to know their true feelings upfront. Don’t be hard on them if they feel they won’t cope. It is natural for them to feel this way as they too maybe feeling scared of the unknown.
The second list, the one with all the things out of your control, well take a long hard look at it and then rip it up and throw it in the bin! All those things you can’t change most of them will never happen and you will only waste precious energy worrying about anything on that list. No amount of worrying bought about change. So invest your time in the things you can change. Trust me ripping up that list will feel so liberating!
Strategy 2. What would you tell a friend?Over the years I have been faced with some trying times, as many of us do. In my late twenties to my mid-thirties I was stalked by an ex-partner. At thirty I lost my mother to Non Hodgkin Lymphoma, four months later my paternal grandmother to throat cancer and 14 months after my mother’s death I lost my father to Amyloidosis. Secondary to this rare terminal illness my father also had bone marrow cancer. When life throws you its toughest challenges it can be over whelming. Often we are paralysed by the magnitude of the difficult circumstances and or decisions we are faced with!My mother was the strongest person I have ever known. At a young age she imparted upon me a very simple but effective coping strategy. She told me; when making a difficult decision always think what advice would you give to your best friend if faced with the same decision. Knowing what you know about the situation you find yourself in what would you tell them! We all want the best for our friends and taking a look at the situation from an external point of view helps to land on a balanced opinion. This strategy has stood me in good stead on many an occasion.
Strategy 3. Trust your gut feeling! It hasn’t failed me yet!
Strategy 4. Hunting for a dinosaur egg!When I was feeling a little over whelmed or exhausted, family and friends would kindly offer their help. When you are suffering an illness sometimes all you really need is a little space, to catch your breath. Not wanting to hurt their feelings I came up with the strategy of sending them to do a task that I knew would take them sometime to complete. It often involve them needing to go and find me something that was not easily found, I coined it hunting for a dinosaur egg! It worked a treat! The helper was happy to assist and it gave me a little time to take a breather. I also found this strategy useful if a loved one was struggling to cope with my illness and they were feeling stressed and helpless. Assigning them a task seemed to help take their mind off of the situation, whilst making them feel involved.
Jo Warren | August 2018
This article is in no way advocating for surgery as everyone is different and what may be right for one patient may not be right for another. However I do want to share the strategies I used for coping and for making my difficult decision.
Strategy 1. Make two listsWithin a few weeks of being diagnosed with a pineal cyst I was offered surgery. My head was in a spin and I felt I had no control over what was happening to me. One of my old work colleagues has a saying; Q. How do you eat an elephant? A. One bite at a time!
With this in mind I set out to make two lists to breakdown all of my questions, feelings and possible outcomes to the situation I found myself in. I started with two pieces of paper, one A1 size and the other A4 in size. I listed all of the things in my control on the large piece of paper and on the smaller one I wrote down all the things I couldn’t control!
By writing everything down it helped me to externalise what I was feeling and helped me to organise my thoughts. By writing my lists down in bullet point format I had some very easy manageable directives I could follow. If I wrote down a negative feeling I would make some notes next to it as to how I might change or understand that feeling.
Example• Thought - I’m scared of the unknown – Action Step - Talk to other patients that have had surgery.• Thought - I’m scared of being a burden to my family – Action Step - Ask family members how they feel about helping after surgery and give them an out if it is too much for them. It is far better to know their true feelings upfront. Don’t be hard on them if they feel they won’t cope. It is natural for them to feel this way as they too maybe feeling scared of the unknown.
The second list, the one with all the things out of your control, well take a long hard look at it and then rip it up and throw it in the bin! All those things you can’t change most of them will never happen and you will only waste precious energy worrying about anything on that list. No amount of worrying bought about change. So invest your time in the things you can change. Trust me ripping up that list will feel so liberating!
Strategy 2. What would you tell a friend?Over the years I have been faced with some trying times, as many of us do. In my late twenties to my mid-thirties I was stalked by an ex-partner. At thirty I lost my mother to Non Hodgkin Lymphoma, four months later my paternal grandmother to throat cancer and 14 months after my mother’s death I lost my father to Amyloidosis. Secondary to this rare terminal illness my father also had bone marrow cancer. When life throws you its toughest challenges it can be over whelming. Often we are paralysed by the magnitude of the difficult circumstances and or decisions we are faced with!My mother was the strongest person I have ever known. At a young age she imparted upon me a very simple but effective coping strategy. She told me; when making a difficult decision always think what advice would you give to your best friend if faced with the same decision. Knowing what you know about the situation you find yourself in what would you tell them! We all want the best for our friends and taking a look at the situation from an external point of view helps to land on a balanced opinion. This strategy has stood me in good stead on many an occasion.
Strategy 3. Trust your gut feeling! It hasn’t failed me yet!
Strategy 4. Hunting for a dinosaur egg!When I was feeling a little over whelmed or exhausted, family and friends would kindly offer their help. When you are suffering an illness sometimes all you really need is a little space, to catch your breath. Not wanting to hurt their feelings I came up with the strategy of sending them to do a task that I knew would take them sometime to complete. It often involve them needing to go and find me something that was not easily found, I coined it hunting for a dinosaur egg! It worked a treat! The helper was happy to assist and it gave me a little time to take a breather. I also found this strategy useful if a loved one was struggling to cope with my illness and they were feeling stressed and helpless. Assigning them a task seemed to help take their mind off of the situation, whilst making them feel involved.
Jo Warren | August 2018
Always know that you are not alone and if you are feeling like you are not coping please talk to a family member, loved one or friend and tell them how you are feeling. If you feel like you are not able to talk to someone close to you please reach out to one of the Pineal Cyst and Tumour Facebook support groups listed on the Research and Resources page of this website. Feel free to ask members if there is anyone in your local area that would like to buddy up. More and more members are reaching out to one another and meeting up for a coffee and a chat. It's a great way to help each other.
In the event that you are feeling suicidal and need immediate help. The SOS button will click through to a worldwide list of suicide prevention and crisis numbers. Please call your local number for help. You Matter!
In the event that you are feeling suicidal and need immediate help. The SOS button will click through to a worldwide list of suicide prevention and crisis numbers. Please call your local number for help. You Matter!