Phillip’s Story

Phillips’s experience, in his own words

I received chemotherapy and radiotherapy for anal cancer. I also have polycythaemia vera (PV), a rare blood cancer, and a pacemaker. I’m two years out.

I run every day. A few months ago, I started developing balance issues and leg weakness. Eventually, during a blood test, I learned that I was B12 deficient, and I developed anaemia and nerve damage in my legs. My B12 levels are now normal with monthly injections, but my legs are still weak and wobbly.

A recent lumbar spine MRI revealed that my bone marrow in my pelvic region no longer produced red blood cells, and fat has moved into the pelvic area. For two years, the haematologist said that all my blood counts were normal because they were suppressed by the radiation. Now, at least I know it’s worse, with the pelvic region not producing those red blood cells. PV is a cancer that causes the overproduction of red blood cells. With this problem [caused by radiotherapy], my counts look normal, but I still have PV.

The anal cancer treatment also left me with intestinal scarring. I don’t know how this will continue to affect me.

I have a pacemaker for total heart block and Atrial fibrillation (AFib), [which developed due to the] anal cancer, its treatment, and PV. I don’t know what to do or what to expect.

Footnote information

Polycythemia vera (PV) –  PV is a slow-growing blood cancer where bone marrow produces too many red blood cells, causing thickened blood and an increased risk of blood clots.
Magnetic Resonance Imaging (MRI) – is a non-invasive medical scan that uses strong magnetic fields and radio waves to produce detailed, cross-sectional images of organs and soft tissues.
Atrial fibrillation (Afib) – is a type of heart rhythm problem where your heartbeat is irregular.