5 years living with Stage IV Metastatic Breast Cancer.

I’m not posting this for sympathy or applause, but so I might continue to live and so we might stop losing our loved ones. Awareness and early detection is not enough.

3 years ago I posted this on facebook. Since then I have had a mastectomy and a port inserted cos my veins are now rubbish. I’ve had another 9 cycles of chemo and two other treatments that didn’t work. There is damage to my right lung, possibly a side effect of the radiotherapy that is causing fluid build up. In 2016 I spent 13 weeks in hospital, had emergency heart surgery, 8 litres of fluid drained from my lungs and around my heart, and I could have died.

I now take daily heart meds also for congestive heart failure caused by the cancer meds that I’ve been on for the last 3 years. I’ve just had radiotherapy to my spine which has extensive mets. For those of us with metastatic cancer, treatment never ends, but I can’t even begin to tell you how lucky I feel to still be here almost 5 years in.

This summer I lost 4 friends to cancer, 3 of them to metastatic breast cancer. I continue to count my blessings and pray that more money is put into research instead of pink campaigns that allow companies to piggyback on our suffering.

 

To those who love me and those who are quietly and bravely fighting their own battles, I’m sorry but I have to do this; it’s important. It is not my intention to cause distress or destroy hope, God knows I need all the hope I can get, and although I am more than a number, these are the grim ones we have. It is how it is; this is my life, my reality, and the reality for many women and some men out there who are going to work and raising their families and living their lives with advanced breast cancer.

Confronting it and clawing back any bit of control I can (and you all know how much I like a bit of control!) is what gets me through and gives me hope. I can’t allow fear to steal whatever life I have left so I choose hope and happiness.

NEVERTHELESS, THERE’S NO ESCAPING THE FACTS…

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1) Breast cancer does not claim lives, Metastatic breast cancer does. It is estimated that 690 lives were lost to stage IV breast cancer in Ireland last year. That’s 16.4% of all cancer deaths.

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2) Metastatic, secondary, advanced or late stage breast cancer are all the same thing and refer to cancer that has spread to different parts of the body typically, the bones, liver, lungs and brain. (Bones and liver in my case).

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3) The average survival for metastatic breast cancer is 18 – 26 months. (Shit better take another look at that bucket list!)

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4) 6% – 10% of people are stage IV at initial diagnosis. (I was one of those, the cancer had already spread to my ribs; severe chest pain was one of my first symptoms). Cancer is harder to detect in larger, denser breasts by the way (jealous now?).

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5) Patients diagnosed with metastatic breast cancer have a 20% chance of surviving 5 years. When you hear great things about how the cancer survival rate in Ireland has gone up bear in mind that this is a five year survival rate for early detected cancer. Little consolation really.

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6) Early detection does not guarantee a cure as 30% of people diagnosed with early stage disease will develop metastatic breast cancer. This can occur 5, 10, 15 + years after first diagnosis.

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7) Metastatic breast cancer cannot be cured but ongoing treatment can control the cancer and relieve the symptoms. Although treatment can control cancer for a long period eventually most cancer will develop a resistance to that particular treatment.

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8) Young people as well as men can be diagnosed with metastatic breast cancer. You can’t always tell that people are sick, me for example, the picture of health!

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9) And on a more positive note metastatic breast cancer is not an automatic death sentence; every patient and their disease is unique. Although (god damn it!) most people will ultimately die of their disease some will live for many years. (Phew!)

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Okay, so correct me if I’m wrong somebody please, but judging from the above it would make sense to me that we should be combating the spread and growth of cancer to prolong (I’m not talking a few months here) and save lives. I know this is no mean feat and takes time and money and probably won’t happen in my lifetime, but I am horrified by some of the information I have come across as I research my situation. Apparently while huge amounts of money continue to be put into prevention and early detection, hardly any is put into metastatic research; – that’s all cancer, not just breast!

Six months of hormone treatment, nineteen cycles of chemo (to date), 2 weeks of radiotherapy, infertility, early menopause, wonky boob, weekly bloods, monthly drip and implant, potential osteoporosis, scans every 3 months and looming death and now feeling like I’ve been written off too? That’s rough.

Please know that I am not in pain and am living my life to the full, but I get scared and sad sometimes, especially before a scan, and when someone in my support group doesn’t turn up.

LIFE IS PRECIOUS. DON’T WASTE IT!

If I have to be a statistic, I’m doing everything I can do to be one that defies the odds.

Kitty 💕 

*Please be mindful of where your donations go and consider researching specific charities.