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The Diagnosis - Our Cancer Journey (Part 2)

Xmas felt like the worst we had ever had, nearly. My father had died a number of years previously on Xmas Day, so even when we do celebrate, it doesn't hold the same feelings as it used to. This year though was horrific. We cancelled our trip away while we waited for the all important appointments to be set up. We spent Xmas Day and Boxing Day at home on our own, retreating from the world and wandering around in a daze.

Xmas came and went and we then spent as much time after Xmas as we could with Kate, Kev and the girls to take our mind off things. We had just got ourselves a new puppy in November, a Cavoodle called Ben and he managed to make us smile often through that period. He was a good distraction to what was an extremely stressful time. I don't think either of us were sleeping well, Rod was in a bit of pain with his chest and the words "a suspicious mass "was hanging over our heads.

It took until the week after Xmas to get an appointment with the Lung specialist who would be the one to let us know what the next steps were. We were still hopeful at this stage that the tumour might be benign or that they had got it wrong. So started the rounds of CT scans, PET scans, more blood tests and an MRI, which took us through to the middle of January. It felt like our lives were just running from one scan or appointment to another. We were then referred through to the Cardiothoracic surgeon who stared across the desk from us as he delivered the news. "The PET scan shows that its malignant and aggressive but not yet metastisised anywhere else. It's also attached to the heart not in the lining around the heart."

I remember starting to cry as I was looking at Rod. How could this amazing man have cancer of the heart. Life seemed so unfair and in that moment I knew all our hopes and dreams for the future were thrown out the window. Life as we knew it was going to be suddenly different. This wasn't in the plan for our lives. We had so much that we still wanted to do, how could this possibly be part of it. We had already told most of our family and friends, but I remember being exhausted as I was saying the same thing over and over. We made the decision then that we would keep everyone updated on Facebook to take the pressure off both of us. I then made the decision that I would step back from my business to concentrate on supporting Rod through this.

Within a couple of weeks Rod had a biopsy undertaken through the vein in his neck, so that they could accurately diagnose what type of cancer we were looking at. When we got the call to say that unfortunately they didn't get enough tissue to accurately diagnose the tumour we were devastated. This meant that Rod would need a open thoriacic biopsy. So a week later they admitted Rod to hospital and undertook a thoracic biopsy. His attitude and mindset through all this was incredible, managing to keep that smile on his face even when in pain. Rod was to stay in hospital for a couple of days, so after his surgery I went back to Kate's promising him I would be back the next morning. We had been told that it would take a few days to get a diagnosis.

I was stunned when Rod rang later that night and told me that they had a preliminary finding already and that it was - Primary Cardiac Angiosarcoma a rare and extremely aggressive cancer. I remember my chest tightening, I couldn't get my breath, the world was spinning around me and I felt like I was going to pass out. I walked out to the kitchen where Kate was cooking dinner. We hadn't told the grand-daughters yet, trying to protect them from what was to come. They loved Grandpa so much, that we didn't want to worry them. Kate took one look at me and I saw all the colour drain from her face.

Later that night Rod rang me again from the hospital to let me know that the surgeon and the oncologist wanted to meet with us the next day to discuss what would happen next. I had already googled extensively on Cardiac Angiosarcoma which on reflection I would not advise anyone to do. Because it's so rare and not many cases, there is no up to date study data and the prognosis and expected outcomes were poor. I was terrified of what they were going to say.

The next day, with Kate by my side, we walked into the hospital to face whatever was coming. The surgeon and oncologist told us that there was to be a few more meetings yet as to the best form of action going forward but it would include chemotherapy. We were told that that the tumour was too large to remove as it was, and the plan would be to try and shrink it first with a view to removing it later.

I remember walking through January and into February in a haze, fearful of the future. Googling chemotherapy and what to expect. I went down the huge rabbit hole of what we could do naturally to assist, how to build his immune system, alternative cancer treatments and I joined lots of support groups. All of which I now recognise as a normal part of the process.

We are so lucky to have the support of family and friends who have rallied around us in support as we continue to navigate this cancer journey.

Much love ~ Christine

In the next blog - Rod starts chemo and more bombshell news.

grateful for family support

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