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!
Showing posts with label guilt. Show all posts
Showing posts with label guilt. Show all posts
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!
Friday, 27 October 2017
Guilt
I don't believe in soulmates. I don't believe that my husband and I were the only ones for each other. We met, we hit it off, we became a couple, we fell in love. My husband is in his mid-thirties. When I am gone, I very much want him to find love again, to move on. Thoughts of my husband being lonely upset me much more than the thought of no longer being present on this earth. In the wake of my diagnosis, I was plagued by guilt, the feeling that my husband had chosen the wrong one.The lack of belief in soulmates has a strange duality to it. On the one hand, it means that I believe he can move on with someone else in the future. On the other hand, it makes me think that in the six years we've been together, he could have met someone else who would be able to shimmy into old age with him. So it both does and doesn't bring me comfort all at the same time. It's troubling. And it will never resolve. I've told my husband that I am never not going to feel guilty about the fact that I'll be vamoosing sometime in the near future. And it's truth. Guilt will be a constant bedfellow of mine until I breath my last.
This seems to be very common among terminal illness sufferers, if not universal. Guilt can assail me at any moment - "Why was I so mean to that girl in school?", "Why did I borrow that money from my mother that I now can't pay back and she can scarcely afford to be without?", "Why won't I be around to help my parents in their dotage?". It is acutely felt at times, almost the point of hypersensitivity. And there is no resolution, not really. And that is layered on top of all the other crap that comes with this diagnosis. I must prepare myself for death, cope with the treatments and pain and progression and on top of it, deal with the roiling mental turmoil that comes with dealing with the niggling thoughts that sometimes crowd my head. Terminal illness never, ever lets up. It is multi-faceted. It's an endurance test. A never-ending obstacle course. From the moment the consultant responded to my query "Is it cancer?" with a hesitant pause, any facet of my life that was carefree took flight forever. Life will never be carefree again, I will never again experience the pure excitement of hope and insouciance and burgeoning opportunity. Any piece of happiness I will ever feel again will be offset by the deadening and ever-present reminder of the life sentence I have been handed. That was something that I felt keenly and actively mourned for in the months after my diagnosis. It has got easier to deal with but it will always be with me to some extent. As clichéd as it sounds, a part of me died when that consultant hesitatingly confirmed my worst fears. And the part that died was replaced by something much worse - guilt that will be with me forever more.
This seems to be very common among terminal illness sufferers, if not universal. Guilt can assail me at any moment - "Why was I so mean to that girl in school?", "Why did I borrow that money from my mother that I now can't pay back and she can scarcely afford to be without?", "Why won't I be around to help my parents in their dotage?". It is acutely felt at times, almost the point of hypersensitivity. And there is no resolution, not really. And that is layered on top of all the other crap that comes with this diagnosis. I must prepare myself for death, cope with the treatments and pain and progression and on top of it, deal with the roiling mental turmoil that comes with dealing with the niggling thoughts that sometimes crowd my head. Terminal illness never, ever lets up. It is multi-faceted. It's an endurance test. A never-ending obstacle course. From the moment the consultant responded to my query "Is it cancer?" with a hesitant pause, any facet of my life that was carefree took flight forever. Life will never be carefree again, I will never again experience the pure excitement of hope and insouciance and burgeoning opportunity. Any piece of happiness I will ever feel again will be offset by the deadening and ever-present reminder of the life sentence I have been handed. That was something that I felt keenly and actively mourned for in the months after my diagnosis. It has got easier to deal with but it will always be with me to some extent. As clichéd as it sounds, a part of me died when that consultant hesitatingly confirmed my worst fears. And the part that died was replaced by something much worse - guilt that will be with me forever more.
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