Pieces of Me

Bits and pieces of my life and of my heart.


4 Comments

And then it was 3.

I am 3 years cancer free today. 3 years post what has to be the scariest thing that has ever happened to me. 3 years since the debilitation that was the surgeries and the toxins, the exhaustion and the fear. When I was sick I worried that I wouldn’t make it past 3 months, let alone 3 years so I am happy today. Quietly grateful. Respectful of those who have not been so lucky, and of those who are still in the midst of their own personal hell.
It can be tricky, this “after cancer” business. There is little to prepare oneself for how it feels, how it fits, how it confuses, how it requires us to hang on for dear life until the boat stops rocking. This does not happen immediately after the first clear scan. At least for me, this was not the case. I was caught in the middle of joy and panic, relief and fear, love and hate, admiration and envy. It is a tough place to be.
Expectations of others weighed heavily on me. Everyone has been touched by this disease. I defy you to find someone who hasn’t. Some of us live and some of us don’t. The weight of other people’s loss, for me, was huge. Guilt was strong in me. Survivors guilt, if you will. Navigating feelings of fear and loss, of anger and frustration was challenging for fear of being thought of as selfish for not being more grateful for having survived something that not all of us do. Who do you tell when you feel this way? What do you say without sounding ungrateful?
This was my permanent state of being for at least 18 months after this day 3 years ago. I felt like a horrible person. Of course I was happy, relived, grateful. Of course I knew others had not been so lucky but I was also scared, angry, lost, confused, my body recovering from the onslaught of abuse this disease requires to survive, and I have to say, it was the loneliest of times.
The good news about the passing of years is that it takes a lot of these feelings and makes them smaller, more manageable, easier to navigate. The fear lessens, the anger too. You have days that you do not think of your cancer, then these days can turn into a week, sometimes two or three at time. It is the loveliest realisation to have, these “forgetting your cancer” periods. They make you smile, feel fearless, grateful, blessed. You realise you are making plans again, about your life, your happiness and it feels good. Boy, does it feel good.
I spent the weekend with someone I love doing things that I love to do. I surfed, I swam, I ate, I drank. I tried oysters for the first time and met new people. All new things, new experiences. I had moments being rocked by the most unbelievable feelings of gratitude and joy. I made it.
I made it through the loneliest place on earth and I am finally feeling like I am back home where I belong. I am a different me, a more bloody tired me, but hey, I am here. I am here and I am present and I am loved and I am happy. I am so deeply grateful for getting the chance to keep on living and I plan to allow myself be reminded of this each and every day.
Happy 3 years cancer free day to Me.

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72 Comments

My Response to Minister Reilly.

I thought I had written my last piece about my cancer. I am 14 months away from my first clear scan. The shock has subsided. I am sleeping again at night. I am back to work and am even interviewing for new posts at work. My son has stopped shadowing me and the look of worry and fear is all but a distant memory on loved ones faces.

I was done processing this horrible thing to have happen to me. Or so I thought.

Yesterday an article was published in The Irish Independent. I’ll quote a few lines to explain to you my outrage at what the article and who it quoted was saying.

Our Minister for Health, Dr. James Reilly has gone on record saying that in the future medical cards will no longer be available to those suffering with cancer who do not have a terminal diagnosis. For those of you reading this outside of Ireland a medical card covers doctors fees and prescription medication needed to assist in the treatment of whatever kind of cancer you have. For me that meant a sense of massive relief as it was a huge burden financially off my shoulders, giving me one less of the many, many things I had to worry about as soon as I noticed my tumor 3 years ago.

Currently every person who has had the horror of being told that they have cancer is eligible for this card regardless of the kind of cancer you have.

According to the article …

“SPECIAL medical cards are no longer being automatically given to people with cancer on low incomes unless their diagnosis is terminal.”

Health Minister James Reilly has now confirmed the applications and renewals for these cards now face new scrutiny and national eligibility criteria is being applied for the first time.

In other words, if you are not dying you are not having a card.

I mean no disrespect to anyone who has been diagnosed with terminal cancer. I thank my lucky stars every day that my tumor was caught in time and has allowed me the privilege of many years to come. This is not what this response is about.

It is the following paragraph that did me in. Made the hair on the back of my neck stand up. My heart beat like the clappers. The rage in me come flooding to the surface. In the article, already telling the majority of cancer patients, like Me, that he, as our “Health Minister”, was kicking us when we are down, Mr. Reilly actually said this…

“In the past it was the decision of the chief executive of a health board. It was his discretion not a doctor’s discretion. They were given out for all sorts of reasons.

“In some cases this was because the person had cancer. In the past cancer struck terror into the heart of people and the prognosis was very poor.

“It is now a very different condition and ranges from being a desperate diagnosis to not such a bad diagnosis at all.”

Let me repeat the last 7 words very slowly…NOT.SUCH.A.BAD.DIAGNOSIS.AT.ALL.

Yes. You did read that.

No. It is not a typo.

Obviously spoken by a man who has never heard the phrase, “I am sorry but you have cancer”, spoken to him at all.

Mr. Reilly,

Let me tell you a bit about my, “not such a bad diagnosis at all”.

It was horrendous from the very day I noticed my tumor, until the day back last May when I had my first clear scan. Some days the horror and fear still reside. Not just in Me but in my 11 yr old son who was 9 yrs old when I had to sit him down and tell him that his Mum, his only parent, his whole world had cancer. A cancer that had taken a mother of one of his classmates 2 years previous and had shattered the entire school where she worked, with 2 young girls, who are still not over the horrible loss, and I suspect will never be.

He was terrified that I would die. I was terrified that I would die. My parents were terrified that I would die. My brothers, my friends. Are you catching my drift?

No. My cancer was not terminal. I cried in relief for months that it wasn’t.

Yet, I still had to take leave from my career. A career that had just taken flight after years in college. All of a sudden I was taken out of the game. I was cut open on two separate occasions and pumped so full of toxins that I had to be isolated from people because what they gave me was that damaging to others.

Imagine for a moment what it was doing to me.

After 3 months my place of work no longer paid me and I was trying as best I could to live off sick pay, which was a third of my regular wage. My situation in life had not changed a bit. I was still a single parent. Still responsible for all my bills. Still had food to put on the table. Clothes to buy my son. Books for his school. Uniforms, shoes, summer camps. Rent to pay. The list was endless. The bills relentless.

Shall I go on?

I had cancer and I was terrified, but do you know what kept me up at night? What gave me the night terrors?

The financial disaster that my “not such a bad diagnosis at all”, pushed me into.

My bills were late when they never had been in my entire life. For the first time I had to avail of the book grant at my sons school. The back to school allowance. My family had to buy my groceries. Pay my phone bills. Take my son on beach trips with them as I was too weak from treatment somedays to climb out of bed.

My “not such a bad diagnosis at all”, brought me to my knees in ways you could only know if you yourself had been handed one.

My “not such a bad diagnosis at all”, robbed me of my last few fertile years. My self esteem. My self worth. My mental health. My joy. And replaced it with a fear that seeps deep into your bones and probably won’t leave me for a very long time.

This medical card that you have taken off us. This medical card was the one saving grace in my life. It still is. I cannot convey the relief in not having the expense of all those many, many, many doctors visits while I was sick and all the pills I had to take and still do. One of which I will need to take for the rest of my life. This year I have been on 3 antibiotics as my immune system has been so compromised I am picking infections up all of the time. Without my medical card I would not have been able to have gone to my doctor last month as I am still trying to claw my way out of the financial hell hole that my “not such a bad diagnosis at all”, put me into.

How dare you. As a doctor. How dare you.

As a Minister for Health. How dare you.

As a member of the human race. How dare you.

I am left with nothing else to say, except maybe you should be thanking whatever God you believe in that you have not yet had the pleasure of, “not such a bad diagnosis at all”.

May good health and fortune be with you.

Regards,

A Kick ass, strong, not afraid to tell you how it is, Cancer Survivor.

UPDATE: My blog was mentioned in the Dail – see the video.