Interview 107

Age at interview: 50

Age at diagnosis: 44

Brief Outline: Neil was diagnosed with acute myeloid leukaemia after feeling weak and lethargic and having a respiratory infection. He spent 7 months in hospital having 5 courses of chemotherapy as part of a clinical trial, which put him into remission.

Background: Neil is an accountant. He is married with 2 children aged 17 and 15. Ethnic Background' White English.

More about me...

Neil had been feeling weak and lethargic, needed antibiotics for a respiratory infection and still didn’t feel right. His acupuncturist recommended he see his GP. The doctor took a blood test and phoned him the same day to say he should go to his local hospital that evening where there was a bed waiting for him. Being a busy man with a business to run he was initially reluctant to drop everything but the doctor was insistent. Once at the hospital he asked why he had been admitted and was told he probably had acute myeloid leukaemia.

 

The next day the diagnosis was confirmed and he had a Hickman line inserted and treatment started the following day. He was given a chemotherapy regimen called ICE which initially made him feel a lot better but as a side effect developed a swelling in his scrotum, which went away with further treatment. After receiving treatment for a month he was declared to be in remission and allowed home for a few days to recuperate before starting the 2nd course. His Hickman line was replaced between the first two courses because of an infection. The third course was a different drug combination, which made him more sick than the ICE had and caused mouth ulcers for which he was given morphine. Other side effects included weight loss and hair loss and after each course of chemotherapy he developed septicaemia.

 

After his third course of chemotherapy he had his bone marrow harvested in case he needed a bone marrow transplant in future, as his only sibling had been tested and was not a match. He agreed to take part in a trial to compare the effectiveness of 5 courses of chemotherapy versus 4 and was randomised to receive all 5 courses. The start of his 4th course of chemotherapy was delayed by low blood counts and a swollen lymph gland in his armpit. At the beginning of the 5th course he couldn’t face another month in hospital and suggested having the treatment as an outpatient, but after two days he realised that wouldn’t work and stayed in hospital.

 

After five courses of chemotherapy and seven months in hospital Neil was discharged having completed the treatment. 

Since having leukaemia Neil has joined a national charity and talked to patients and...

The other thing that has come out of it is, and it really started from when I was in hospital, I mean I’d always given blood, which I can’t do now, for no other reason than it was good idea to do. I mean there’s no ulterior motive, it was, somebody had asked me to do it, I did it, ‘Yeah fine. Okay.’ And subsequently I’ve been introduced to Leukaemia Care because they provide support to the family as the patient is going through the treatment and for some period afterwards. When I was going through treatment I was wheeled out to speak to patients and show them that there was actually life x number of months down the line. I was asked to give talks to nurses, the patient’s perspective. Again, just putting it, and explaining, ‘You’re trained to do this but look at it from our point of view and what it is.’ I now feel it’s not relevant for me to do that because I’m five years post and the treatment’s changed. So my experience is not necessarily somebody else is going to be going through. But I’ve picked up much more on the charity side of things and got involvement there, taking the experience I’ve had and using it hopefully for some good, get involved in training and those bits and pieces, which I wouldn’t have done otherwise. So yeah, that’s a bit of a change.

 

And I got involved with consumer research panels, which were a pilot study to try and get more of the patients involved in research projects. And that’s been interesting because patients do have a perspective and clinicians sometimes don’t understand that. So again trying to use the experience, sounds altruistic, it’s not, not meant to be, but it’s trying to use what I’ve experienced and share it so that others can benefit if they can on that score, but going forward what will be will be. 

 

Neil decided to change his life and take on a new challenge working in property development after...

Right. I wanted to ask you how long it took to get your life back to normal once you got home? If indeed it did go back to normal.

 

Life changes. And I touched on earlier, you sort of look at things slightly differently. Life getting back to normal, I decided to change my life, not in any major way, but I decided to go and do something that I hadn’t, I’d touched on before when I was in employment, part of my life I’d been involved in a setting, taking an American company multi-national in the music industry. And I had had great fun for three or four years setting up companies all round the world, being in at the beginning. And I’d done not a bad job and thought, ‘Well I like property, let’s go and see, go and do something like that’. I didn’t particularly want to become a property developer but I wanted to do something connected with property. And so I ended up being part of a team of people who’d bought an old house and have been doing restoration of old properties, which brings different challenges and different looks and things and the way to do things, which is that’s about, and so that changed me on that score, so I did that and that’s there.