A few months ago, I was contacted by Ciaran Fairman of the REACH Beyond Cancer website and asked if I would like to record an episode of his REACH podcast series. He had read my blog and liked my brutal honesty when it comes to living with terminal cancer. I thought about it for a few days and decided to go for it.
There were a number of factors behind my decision. I had recently watched a documentary about the September 11th attacks and in it, one of the widows of a firefighter who died that day said that she was glad that she had a surviving phone message from him. She said that people told her that you forget the sound of your loved one's voice and that she could easily believe that would have happened to her if she did not have the phone message. So, for a while I had been pondering recording my voice somehow for posterity. I also have a great ability to jabber on once I warm to my theme, so knew I'd have no problem answering questions on my cancer. Plus, I like to do anything I can to be of help to others in the same situation and help them feel less alone. So I thought it would be something else that would be out there in the blogosphere for other terminal cancer patients to consume.
With his REACH Beyond Cancer website, Ciaran aims to show how exercise can aid recovery from cancer, build strength in cancer patients that will help them through the treatments, and improve survivorship. The podcast series includes interviews with nutrition and exercise experts, scientists and cancer patients.
The links to both my podcast episode and the REACH website are below:
I'm episode 38: http://itunes.apple.com/us/podcast/episode-38-crazy-cancer-lady-living-with-terminal-cancer/id1223832935?i=1000409059753&mt=2
The REACH website: https://www.reachbeyondcancer.com
I hope you enjoy it!
Tuesday 24 April 2018
Thursday 22 March 2018
A Series Of Unfortunate Compromises
In the first three months after I was diagnosed, I was a basket case. For three months, I really only spoke to my husband and my mother. And many of the conversations with my mother were often unilaterally angry (poor woman). Occasionally I'd also talk to my father and my sister but only if I really had to. And I have a good relationship with my father and a pretty good one with my sister. So for me to barely speak to them both for a good chunk of time just shows how scrambled my brain was. Friends were ignored completely in that time. They were so supportive though; giving me space, happy to keep a sporadic one-way conversation going until I was ready to talk.
As much as I was mentally in turmoil then, one thing became apparent to me very quickly: my life was now severely compromised and would be until I died. At the time, I could barely breath. My mother had to cook and clean for me. I could barely shower, I was so breathless and so in pain. My working life was over. Life closed in overnight. It was an exceptionally difficult reality for a 31 year old woman to face and accept. Before I started experiencing the pain and breathlessness that led to my diagnosis, I used to cycle everywhere, sometimes with a backpack full of heavy groceries on my back. It was so hard to accept that that part of my life was now over.
My treatments have all worked well for me and that has helped to expand my world a little since that awful few months three year ago. I can now cook and clean and shower and have been doing so for more than two years now. But compromises are still there and these still restrict my life and always will. Because I am married, I am ineligible to receive social welfare because my husband's quite modest income is taken into account. The threshold is very low. This leaves us very badly off. Compromise. My husband proposed to me in a hospital bed at my lowest ebb. I'm not the most girly girl but I did dream of a romantic, happy proposal. Instead, I was hairless and in mental turmoil. Compromise. The medications I take make it really difficult to lose weight and therefore I am not happy with my appearance. Compromise. I felt and looked really unattractive on my wedding day. Compromise. Because of our low income and the sky-high rents where I live, we must stay in our rent-controlled apartment even though it doesn't really suit us any more. Compromise.
Compromise, compromise, compromise. I could go on.
And this is forever until I die. And my husband's life is also compromised too. That heaps guilt on top of everything else. I think this early realisation exacerbated my initial period of mental turmoil. I felt so trapped and found it so difficult to get my head around the fact that my life was now so constrained. The lives of my friends and my sister were taking flight: new jobs, romantic proposals, houses, savings. My life could not have been more different and it was for good. And I still struggle with that gulf between me and them. It has become a little bit easier to deal with, mainly because I compartmentalise my feelings when a friend tells me of exciting developments in their life. But it is still hard.
And there are no easy answers. There's no neat resolution. It just is what it is. I will be broke and fat and my health will decline and then I will die. That's how this plays out.
I told my husband the other day that if I could choose one word to describe my feelings towards cancer and what it has done to my life, that word would be: disappointment. That's the overriding feeling. This is it? This is what I get? What was it all for? I always struggled with existential angst and being diagnosed with a terminal illness has only heightened that. I really felt the universe was laughing at me when I was diagnosed. I had wasted my life wondering what the point of it all was and it was as if the diagnosis was underlining it all: there is no point!
A bleak entry today and I apologise for that. But I guess part of the purpose of this blog is to try and express some of the thoughts that crowd my head at times. I'd like to say I feel better after writing this but as I said, this is something that will not resolve. It's an open-ended problem that I get to grapple with every day. Yay!
As much as I was mentally in turmoil then, one thing became apparent to me very quickly: my life was now severely compromised and would be until I died. At the time, I could barely breath. My mother had to cook and clean for me. I could barely shower, I was so breathless and so in pain. My working life was over. Life closed in overnight. It was an exceptionally difficult reality for a 31 year old woman to face and accept. Before I started experiencing the pain and breathlessness that led to my diagnosis, I used to cycle everywhere, sometimes with a backpack full of heavy groceries on my back. It was so hard to accept that that part of my life was now over.
My treatments have all worked well for me and that has helped to expand my world a little since that awful few months three year ago. I can now cook and clean and shower and have been doing so for more than two years now. But compromises are still there and these still restrict my life and always will. Because I am married, I am ineligible to receive social welfare because my husband's quite modest income is taken into account. The threshold is very low. This leaves us very badly off. Compromise. My husband proposed to me in a hospital bed at my lowest ebb. I'm not the most girly girl but I did dream of a romantic, happy proposal. Instead, I was hairless and in mental turmoil. Compromise. The medications I take make it really difficult to lose weight and therefore I am not happy with my appearance. Compromise. I felt and looked really unattractive on my wedding day. Compromise. Because of our low income and the sky-high rents where I live, we must stay in our rent-controlled apartment even though it doesn't really suit us any more. Compromise.
Compromise, compromise, compromise. I could go on.
And this is forever until I die. And my husband's life is also compromised too. That heaps guilt on top of everything else. I think this early realisation exacerbated my initial period of mental turmoil. I felt so trapped and found it so difficult to get my head around the fact that my life was now so constrained. The lives of my friends and my sister were taking flight: new jobs, romantic proposals, houses, savings. My life could not have been more different and it was for good. And I still struggle with that gulf between me and them. It has become a little bit easier to deal with, mainly because I compartmentalise my feelings when a friend tells me of exciting developments in their life. But it is still hard.
And there are no easy answers. There's no neat resolution. It just is what it is. I will be broke and fat and my health will decline and then I will die. That's how this plays out.
I told my husband the other day that if I could choose one word to describe my feelings towards cancer and what it has done to my life, that word would be: disappointment. That's the overriding feeling. This is it? This is what I get? What was it all for? I always struggled with existential angst and being diagnosed with a terminal illness has only heightened that. I really felt the universe was laughing at me when I was diagnosed. I had wasted my life wondering what the point of it all was and it was as if the diagnosis was underlining it all: there is no point!
A bleak entry today and I apologise for that. But I guess part of the purpose of this blog is to try and express some of the thoughts that crowd my head at times. I'd like to say I feel better after writing this but as I said, this is something that will not resolve. It's an open-ended problem that I get to grapple with every day. Yay!
Monday 5 March 2018
My Hiatus
I haven’t really touched the blog this year. It’s not because I’ve lost interest. There’s a few topics I want to tackle and I did say on Twitter that they were upcoming but I found that thinking about these things put me in a dark mental place, so I’ve hit repeated roadblocks. For example, the subject of assisted dying - a topic I have a great interest in (I’m in favour of it, in case anyone is wondering). Then I asked myself: why am I putting pressure on myself if it’s not good for me mentally? Nobody expects me to write these posts. Nobody wants me to jump into a pit of despair just so that they can read a new blog post. So I took a step back from the blog. I’m still new to this blogging malarkey and I’ve learned new things about myself in the process. Baby steps. I’ve learned not to mention not-yet-written blog posts on Twitter, that’s for sure! So I’m just going to ease myself back into it and see what happens.
Later this week, I’m being interviewed for a podcast show about cancer. I’m really looking forward to it as I’m a talker! I’ll post a link here when it is available along with information about what the show is all about. I hope you’ll enjoy it! Oh, and I’m 34 in ten days. Never thought I’d get past 32 or maybe 33 if I was really lucky. So, YAY!
Bye for now. xxx
Saturday 3 February 2018
A Useful Member Of Society Once More!
I just want to write a quick post about a positive update in my life. My existence generally tends toward doom and gloom these days so it’s nice to have something good to write about for once. A friend recently started a blog which is all about her efforts to live as close to a zero waste lifestyle as possible. A college professor once told my class that it’s very difficult to proofread your own work due to bias and the fact that you know what it’s supposed to say and so you tend to gloss over the mistakes. This was very evident in my friend’s first blog post, which was riddled with little mistakes despite her being a good writer. It’s not so important on blogs such as my own which will have a pretty limited readership and is more just there to help me vent. But she is hoping to build up a large readership so it needs to be professional.
I tentatively offered to proofread her posts before she publishes them. I didn’t know how she would react but she was very happy to accept my offer. She understood that it’s a good idea for an independent party to view the posts as mistakes will be more apparent to them. So, I’ve been doing that approximately once a week for the last four months or so! It’s nice to feel useful again and exercise the ol’ grey matter. I was worried at first that the notes and corrections I made on the posts were a little bit blunt but she has responded very positively to them. I think I’ve missed my calling as a sub-editor.
I don’t want my family or friends reading my blog until after I’m gone so I’m not going to name her blog in this post but if anyone wants to visit it, don’t hesitate to ask me here or on Twitter at CrazyCancerLady and I’ll get back to you.
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