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.
Friday 27 October 2017
Friday 20 October 2017
Pink Ribbon Culture - Wilful Ignorance?
My mother was diagnosed with breast cancer in December 2007 at the age of 56. It was caught early. She had felt what she thought was a lump in her right breast. A mammogram was ordered. Nothing showed up in her right breast, but the mammogram picked up cancer in her left breast. She was stage 1. She had a lumpectomy. She underwent a course of radiation. She was prescribed endocrine therapy for five years. The familiar tale of scores of women throughout the world.
My mother is a pragmatist. She knew her chances of survival were excellent but she also knew that there was a chance that the cancer might recur. We all knew actually. We were all clued in. She is still here, ten years later and the dastardly disease has not reared its ugly head again. Except in her youngest child. She will now have to witness me dying from the disease.
But what has surprised both of us since my diagnosis is how few early stage sufferers realise that their cancer can recur and possibly metastasise. My mother was aware that it could ten years ago. Where did she get this information? And why do others not know this? Has pink ribbon culture become more pervasive in the last ten years? Or was it as bad ten years ago? Was the information always there and is it now?
I was diagnosed de novo stage 4. If I was diagnosed earlier, I would want to have all the information. Are oncologists so keen to reassure their patients that they don't want to send any negative information their way? Are they afraid that the patient might be angry with them for telling them that there is a slim possibility of recurrence and metastasis? Part of the reason why I was diagnosed so late was because my general practitioner gave me false hope, telling me that it couldn't possibly be cancer in the breast of the 28-year-old sat in front of him, boobs flapping in the breeze. I wanted to hear that it was nothing. But, the thing is, it was something and him telling me otherwise didn't change that ugly fact.
There seems to be a disconnect between what patients are told and the statistics. Not everyone survives breast cancer. Not everyone who dies from it was a de novo stage 4 case. Therefore, a subset of the people who die from breast cancer were people who were diagnosed with early stage disease. These women got a nasty shock that the reassurances of their early stage days did nothing to prevent. Don't doctors have a duty to be brave and to give women all the information in a kind but firm manner? Let's give early stage women more credit. They can handle it.
My mother is a pragmatist. She knew her chances of survival were excellent but she also knew that there was a chance that the cancer might recur. We all knew actually. We were all clued in. She is still here, ten years later and the dastardly disease has not reared its ugly head again. Except in her youngest child. She will now have to witness me dying from the disease.
But what has surprised both of us since my diagnosis is how few early stage sufferers realise that their cancer can recur and possibly metastasise. My mother was aware that it could ten years ago. Where did she get this information? And why do others not know this? Has pink ribbon culture become more pervasive in the last ten years? Or was it as bad ten years ago? Was the information always there and is it now?
I was diagnosed de novo stage 4. If I was diagnosed earlier, I would want to have all the information. Are oncologists so keen to reassure their patients that they don't want to send any negative information their way? Are they afraid that the patient might be angry with them for telling them that there is a slim possibility of recurrence and metastasis? Part of the reason why I was diagnosed so late was because my general practitioner gave me false hope, telling me that it couldn't possibly be cancer in the breast of the 28-year-old sat in front of him, boobs flapping in the breeze. I wanted to hear that it was nothing. But, the thing is, it was something and him telling me otherwise didn't change that ugly fact.
There seems to be a disconnect between what patients are told and the statistics. Not everyone survives breast cancer. Not everyone who dies from it was a de novo stage 4 case. Therefore, a subset of the people who die from breast cancer were people who were diagnosed with early stage disease. These women got a nasty shock that the reassurances of their early stage days did nothing to prevent. Don't doctors have a duty to be brave and to give women all the information in a kind but firm manner? Let's give early stage women more credit. They can handle it.
The Graceless Cancer Patient
The consultant leads me into a private room at the periphery of the outpatient day ward. I sit on the bed.
"We have the results of your CT scan and I'm afraid the news is not so good."
I hold my breath. I quickly decide to ask him if it's the worst case scenario, not believing it would be and thinking that we could then work back from that. "Is it cancer?" I blurt out. He hesitates and immediately, I am cast into panic-mode.
"You have a breast mass and we see some shadows on your spine".
I burst into tears at once and wail about the mammogram that I missed two and a half years prior. I know that this is bad, very bad. My symptoms had been so bad for so long that I know in my heart that this is what I will die of. I pace the room and push the consultant and registrar away when they ask to feel the lymph nodes in my left armpit. I alternately sit and stand and pace, rambling and hyperventilating, my mind racing. I am immediately truculent and angry. That anger will remain undiluted in me for the next month.
The above was my immediate reaction to being diagnosed with terminal breast cancer 29 months ago at the age of 31. I was not brave. I was not accepting. I was not stoic. I felt so different from all the terminal cancer patients I read about in blogs, who seemed to be so courageous, pragmatic and philosophical when they received their diagnoses. I did ask "Why me?". Many times. I did feel sorry for myself. I railed angrily against my diagnosis. Why could I not deal with this diagnosis with grace like others had done? It was like I now had something else to feel guilty about, as if there wasn't enough guilt already weighing down on me. I couldn't understand how others could be so zen about having their lives cut short so abruptly.
Since then, I have slowly become more accepting of my situation. Slowly. Back then, I thought I would never enjoy anything again. But, for anyone out there who is in this place now, I can quite confidently say that this too shall pass. To an extent. Life will never be the same, and I still cry daily. But I genuinely have plenty of moments where I do not think of cancer and where I can immerse myself fully in enjoying something - a film, a play, swimming in the sea. I've realised that everyone has their own way of getting to the point of acceptance. None of these different paths is wrong. Letting out all that emotion was what I needed. Feeling sad and angry at losing my future is nothing to be ashamed of. I am a curious person and it anguishes me still that I will miss out on so much.
So, if you are newly diagnosed and you feel that you are not handling it all with grace and stoicism, realise that you brain is doing whatever it needs to in order to normalise the situation as much as it can. Don't be distracted by how others are handling it. Ride it out.
This too shall pass.
"We have the results of your CT scan and I'm afraid the news is not so good."
I hold my breath. I quickly decide to ask him if it's the worst case scenario, not believing it would be and thinking that we could then work back from that. "Is it cancer?" I blurt out. He hesitates and immediately, I am cast into panic-mode.
"You have a breast mass and we see some shadows on your spine".
I burst into tears at once and wail about the mammogram that I missed two and a half years prior. I know that this is bad, very bad. My symptoms had been so bad for so long that I know in my heart that this is what I will die of. I pace the room and push the consultant and registrar away when they ask to feel the lymph nodes in my left armpit. I alternately sit and stand and pace, rambling and hyperventilating, my mind racing. I am immediately truculent and angry. That anger will remain undiluted in me for the next month.
The above was my immediate reaction to being diagnosed with terminal breast cancer 29 months ago at the age of 31. I was not brave. I was not accepting. I was not stoic. I felt so different from all the terminal cancer patients I read about in blogs, who seemed to be so courageous, pragmatic and philosophical when they received their diagnoses. I did ask "Why me?". Many times. I did feel sorry for myself. I railed angrily against my diagnosis. Why could I not deal with this diagnosis with grace like others had done? It was like I now had something else to feel guilty about, as if there wasn't enough guilt already weighing down on me. I couldn't understand how others could be so zen about having their lives cut short so abruptly.
Since then, I have slowly become more accepting of my situation. Slowly. Back then, I thought I would never enjoy anything again. But, for anyone out there who is in this place now, I can quite confidently say that this too shall pass. To an extent. Life will never be the same, and I still cry daily. But I genuinely have plenty of moments where I do not think of cancer and where I can immerse myself fully in enjoying something - a film, a play, swimming in the sea. I've realised that everyone has their own way of getting to the point of acceptance. None of these different paths is wrong. Letting out all that emotion was what I needed. Feeling sad and angry at losing my future is nothing to be ashamed of. I am a curious person and it anguishes me still that I will miss out on so much.
So, if you are newly diagnosed and you feel that you are not handling it all with grace and stoicism, realise that you brain is doing whatever it needs to in order to normalise the situation as much as it can. Don't be distracted by how others are handling it. Ride it out.
This too shall pass.
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