Is it teething time for your little one?

 

Jacinta Kelleher is 34 and lives in Dublin with her husband, David.

 

She was first diagnosed with kidney cancer three-and-a-half years ago. Since then, numerous other tumours have been located around her body.

 

Yesterday, she discovered that her current drug treatment programme isn’t working.

 

Jacinta has just one option left: a life-saving drug known as Optivo, which is currently not routinely available in Ireland despite being used in the UK and US.

 

She has begun an online petition to urge Minister For Health Simon Harris to change this policy. You can support Jacinta and sign here.

 

Also a passionate advocator for the cancer support charity, Arc, this is her heartbreaking story in her own words…

 

 

It all started around mid-2011. I started getting a lot of colds and flu, and really bad bouts of tonsillitis.

 

As time went on, I started to suffer with constant tiredness too. Even simple things such as getting up for work were horrible.

 

I woke up on January 1, 2013 with pain radiating from my left side. When I put my hand on my stomach to see what it was, I could feel a big lump. My GP sent me straight to St. James’s Hospital for a scan on my stomach.

 

I waited in an empty bay in A&E for the results. No bed, no chair – simply because there was none free.

 

Eventually, a lovely young doctor appeared and explained that they'd like to admit me to treat “the mass that was on my kidneys”. I asked her was she talking about cancer; she gave me a sympathetic nod.

 

In that moment, my life changed forever. 

 

 

Over the next eight days, there was a whirlwind of scans, tests and biopsies; all confirming I had a kidney cancer known as renal cell carcinoma.

 

I had my left kidney removed along with 18 glands on January 10, 2013. The recovery was tough. I was released after two weeks… and just ten days later I was back in A&E. I had been bleeding internally and the stale blood had burst into my stomach cavity causing extreme pain and an infection.

 

When I met with one of my doctors post surgery, he has explained to me that my cancer had spread out of the kidney and into my lymph nodes. He told me I had five years; I was just 31 at the time.

 

Around the same time, David and I were planning our wedding – we were due to get married in Spain that September.

 

 

Everything was booked; deposits were paid for. But in light of what the doctor had told me, the future was very uncertain – meaning we hastily brought our Big Day forward to that June.

 

We booked Lexlip Manor and scrapped together plans and schedules, not focusing too much on what lay ahead.

 

And then, just a few weeks before our nuptials, I had a scan that came back clear – it seemed miraculous, like everything was coming together for the better.

 

 

Still, that blissful period didn’t last too long,

 

My next scan was in August 2013 and this showed the first sigh of reoccurrence: my adrenal gland was enlarged.

 

In March 2014 I had it removed in Tallaght Hospital. During the surgery, the doctor had to remove glands from around my heart and also shave some from my aorta. Biopsies on three cysts from my thyroid later proved they were also cancerous.

 

In July 2014, I had three-quarters of my thyroid removed in the Eye & Ear hospital.

 

 

Around Christmas 2014, I began to notice a bit of pain behind my eye, and also I was losing my balance a lot - a CT scan in February 2015 confirmed there was a tumour on top of my eye.

 

Just two weeks later I was back in the Eye & Ear having an orbitotomy, which involved fracturing my skull to remove that tumour. 

 

Then last December a scan found six small tumours in my abdomen. Doctors decided to try an oral chemo/targeted drug treatment programme. There are three of these drugs approved for use in Ireland by the HSE: Sutent, Votrient and Inlyta.

 

I started Sutent in early February, and had to stop taking it five days later. I was just so ill.

 

On April 10 I was admitted to James’s to start Votrient. It was tough going, but I managed – despite sometimes spending days in bed because of fatigue.

 

 

Sadly, I received the results of my most recent scan yesterday: Votrient isn’t working. They won’t bother trying Inlyta: if the other two didn’t have any impact the third option won’t either.

 

I am currently living with 11 tumours... two in my lungs, one in my right kidney, six in my abdomen, one where kidney was removed and one in my pelvis.

 

Optivo is my final and only option left – it is proven to save and lengthen the lives of those with kidney, lung and melanoma cancers. I have started a change.org online petition to have it made widely available via the HSE.

 

Thankfully, my doctors have made a special application on my behalf on compassionate grounds for the drug. The outcome of that process is not certain, but there is a glimmer of hope for me at least.

 

The drug costs anything from €50,000 - €100,000 per year of treatment and at the moment, health authorities in this country feel that cost is too much. A price is put on human life – and to be told you're not worth it is heartbreaking for cancer patients and their families.

 

 

I’m not one to wallow, but so much has already been taken from me.

 

The biggest thing is that I can’t have a family: David and I have always spoken about children – we were the kind of couple who had names picked out after the first few dates! That and even simple things like going out with my friends are impossible.

 

I have bad days – and I’m eternally grateful to Arc, the cancer support charity that does incredible work. Mentally as well as physically, going through numerous surgeries is tough, and without Arc I just don’t know if I could keep going.

 

My focus now is on the petition – to get enough signatures to go to the Minister Of Health.

 

Beyond that? It’s one day at a time…

 

SHARE to help Jacinta and to get more signatures for her petition 

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