Meet Neil…

Neil, Lymphomblastic leukaemia

Neil Venton leukaemia

What were you diagnosed with?

I was diagnosed with B-Cell acute lymphoblastic leukaemia.

How did you find you had cancer?

I was feeling very tired and vomiting very often.  I couldn’t drink coffee, which I was addicted to, so I went to my GP, had a few blood tests in the space of a few days, and got sent to hospital, because they couldn’t understand what was wrong with me. Initially the hospital suspected hepatitis. A few days later, I had a bone marrow biopsy, confirming that it was, in fact, leukaemia.

What did you think and feel when you were diagnosed?

I cried. I’m not the crying type of person, but I thought I was going to die. I heard cancer, and then I thought “game over”. The hospital team did their best to reassure me that I was on a curative plan.

How did the people around you react?

There was a mixed reaction. Many people were very supportive and started praying immediately. Some sought to help, financially or practically. Some weren’t very helpful, so I distanced myself from them. They weren’t acting normal around me.

What treatment did you have?

UK ALL 14. The protocol lasts around three years. I’m through the hardest part, and I am currently going through the maintenance phase. I anticipate it will finish in August 2020.

How have you felt through treatment?

I felt exhausted for the first 18 months. Now I feel ok. I feel I can cope. I’m not going to run a marathon by any means, but I’m at least not collapsing in the middle of the road for no apparent reason.

In the early days, I put on a lot of weight, and lost all my hair. I also had no energy and couldn’t lift my children. I couldn’t shower, as I had no energy to stand for prolonged periods of time, so I had baths when I feel I could accomplish it. My hair has now come back, and I am convinced my beard has more growth; this has filled me with joy! I am trying to get back to a reasonable level of fitness. I am also losing weight and aiming to get back to a healthy (BMI normal) range. I am due to start work soon. This will provide great benefit for my mental health. I don’t enjoy staying at home all day.

How did you get involved with Shine?

I saw a BBC news article about ASTRiiD, helping cancer patients get in to work. I noticed that ASTRiiD works with Shine Cancer Support, so I searched for them. I was absolutely nerve-wracked the first time I posted on the Facebook page; something that is very unusual for me. I usually have buckets full of confidence at all times.

What difference has Shine made to you?

It’s given me the ability to vent about cancer away from EVERYONE I know, even my wife. If I struggle, no one in the “real world” knows about it, but I can get it off my chest. To me, it’s a secret world where I can truly be myself.

How do you feel now about my experiences? What’s been the biggest change you’ve faced?

I hope I have been a positive light to others, in how to conduct oneself during such trials. The biggest change I experienced was not working for a prolonged period of time. Since turning 16, I have always been in full-time employment, with only a week between jobs. Not working allowed me to find a new part of myself I didn’t know about, though I’ve recently just returned to full-time work.

If you could give one piece of advice to yourself before your diagnosis, what would it be?

Breathe. I know you want to run, but you need to walk. Especially for the first year of intense chemotherapy. You want to climb every mountain in your life, set the world alight. I needed to recover first. I found this hard, as I don’t normally stop.