Garry Allen

When Garry began experiencing pain in his chest, doctors believed he was having heart problems. So, when the diagnosis of chronic lymphocytic leukaemia (CLL) came the next day, Garry was shocked. Here he talks about his experience of living with CLL, and why it’s important not to bottle your feelings up.

My battle with chronic lymphocytic leukaemia (CLL) began in June 2013 after a fantastic holiday to Texas. On arriving back in the UK, I felt a slight ache across my chest. This proceeded to ache more and more as the week went on. I had decided that if the ache did not ease by the following Monday, I would consult my GP. On the Friday morning as I was leaving for work, my chest felt like it was being hit with a heavy hammer. Time to seek medical help.

Luckily for me, my son rushed me to my GP. On arriving at the surgery, my doctor took one look at me and said I needed to go to A&E straight away.

On arrival at A&E, I was immediately examined as it was thought I was having heart problems. Later that day, I was admitted to a ward where further tests were carried out. It later transpired I was suffering from thrombosis on the lung. At this point I felt relieved as I knew it was treatable.

During the morning, more blood was taken for a closer examination. The consultant who had admitted me came to ask if she could take some more blood as my white blood cell count was off the scale and she said they must have made a mistake in the laboratory. It was the following day when the consultant appeared at my bedside to say, “I have some bad news, you have CLL”, at which point she walked away with no further explanation.

Now my mind was in turmoil with thousands of questions rushing around inside my head and no one around to ask. I had heard of leukaemia and knew it was a cancer of the blood cells. So, I thought it was the end of me. I thought of my family and the things I had always wanted to do before I died.

After being discharged from hospital I decided not to worry my family and kept things bottled up. Looking back now that was the wrong decision. I would often burst into tears when I was walking my dog. I just felt so alone with no one to talk to. On one of my visits to see my CLL consultant, I decided to call in to the Maggies Centre based at the Churchill Hospital. As I approached the sliding doors, my nerves got the better of me and I started to turn away. A young lady volunteer appeared in the doorway and asked me to come inside and have a cup of tea. So that’s what I did.

I straight away began to tell her about my worries and burst into tears. After the cup of tea and on leaving the Maggies centre, I felt as though a great weight had been lifted from my mind. On continuing to my appointment with my consultant, I then decided I was not going to give up without a fight. I asked many questions about my condition and why I was not being treated but being put on Watch and Wait. It was at this point I was told that it would not be the CLL that would kill me, and it was more of a chronic long-term condition.

Appointments were made at three-monthly intervals to check my blood levels. During this time, I was getting to feel tired all the time and needed to have a nap during the afternoon. I also started to suffer from being extremely cold. So eventually in August 2015, it was decided I needed to start treatment.

The worries started again as I didn’t know what to expect. During my three-monthly visits to see my consultant and sitting in the waiting room, I could see the door leading to the day unit where treatment would take place. The only thing was I didn’t know what was on the other side of that door. I wish I had asked if I could take a look.

When I entered through that door to start my treatment, I could see there was nothing to worry about and was put at ease by the nursing staff and patients.

My treatment consisted of six cycles of FCR given intravenously. On the second cycle the dosage was reduced to 50% due to an allergic reaction, which caused a severe rash over my arms.

During my treatment I suffered from many infections which resulted in admission to hospital. This was due to my immune system being compromised during my chemotherapy. So, after my treatment I was very weak and could not walk very far and was always tired. During and after my treatment my employer was very understanding and let me work from home when needed and granted time off for appointments.

In April 2016 I was told I was officially in complete remission. Time to try and get my energy levels back. I saw that Oxford United Walking Football were holding an open day, so I went along and slowly saw my energy return and now train and play twice a week.

My advice for fellow sufferers starting out on the leukaemia journey is:

  1. Never give up and stay positive
  2. Find someone to talk to
  3. Ask questions and find answers to anything that’s worrying you
  4. Try to take regular exercise
  5. Take a rest when needed
  6. You will have set backs along the way, but you can overcome them

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