Eight years after being diagnosed with stage four non Hodgkin follicular lymphoma, Alan is continuing to deal with the emotional fall-out of cancer.

Alan, 56, developed post traumatic stress disorder and depression after extensive chemotherapy and two relapses of his cancer.  He had a stem cell transplant in 2013 using donor cells from his brother and has been in remission ever since.

While he was preparing for his stem cell transplant, he met Philip Alexander a haemato-oncology counsellor at King’s College Hospital in London and began to see him regularly. He is convinced that if he’d been offered counselling earlier, his mental health problems may not have become so severe.

Alan said: “I know how effective counselling is because I have it now. I think that if I’d had counselling at the beginning - at diagnosis - I might not be so bad now. The post traumatic stress developed 12 months post-transplant. That might not have been quite so bad if I could have had counselling before.

“I’ve needed a lot of counselling and been on quite strong anti-depressants. I think that has got a lot to do with me not dealing with it at the time, because if you are being told you’ve got stage four cancer, then all your energies go into a tunnel. You don’t allow yourself to grieve, you don’t allow yourself to get upset in front of people and you hold it all in because you think you have to be strong.”

There's a body and there's a mind and we need to deal with both. Consultants deal with your body but the only person who deals with your mind is you. Most of us haven't been trained to do that, have we?

Although Alan, a teacher, has a supportive husband and parents as well as a close circle of friends, he found it difficult to talk to them about what he was going through.

He said: “You don’t want to tell your friends and your family and even your partner exactly how you’re feeling. You can’t express how you’re feeling, you’re just completely lost and alone. Now that I’ve had counselling, I don’t feel alone anymore.

“The happiest and most relaxed I’ve felt, even if I was really ill, was when I was at hospital in a waiting room with other people that had the same thing as me. Because we all understood each other.”

For Alan, his mental health problems got worse just at the point when his physical health was improving.

He said: “I couldn’t understand why I felt so low, when I should have been jumping up and down celebrating. When you start getting better medically, they see you less at the hospital and, all of a sudden, you need them more.

“That’s when I really struggled and my depression and trauma got really bad. I wanted to see somebody, I wanted to feel safe, I wanted to talk about things. The doctors have to deal with the medical side of your condition and they can’t deal with the psychological side because that’s not their job.”

As Alan’s counselling through the hospital became less intense, he has had some additional counselling arranged through his GP and hopes to continue his talking therapy.

Alan said: “Counselling has done me so much good. I dread to think where I might have been going in my mind if I hadn’t seen a counsellor. Philip Alexander helped me deal with the fact that I’d had a stem cell transplant and I thought I might not survive. His job was to give me that courage to keep going.

“The cancer journey affects you in more ways than just your health. Everyone thinks it’s all about you sitting at home and feeling really rubbish. It’s not about that at all. That is something that anyone can put up with. The real issue is what goes on in your head.

“There is a need for everybody to have the opportunity to have counselling. Your mental health affects everything you do. If you’re not dealing with what you need to deal with, then everything goes wrong.

“There’s a body and there’s a mind and we need to deal with both. Consultants deal with your body but the only person who deals with your mind is you. Most of us haven’t been trained to do that, have we?”

Alan is now looking forward to November, when he will celebrate five years in remission. He said: “I just want to get there. It was good to get to one year, then I needed to get to two, then three and then you’re aiming for five. Five is going to make me feel so much better.”

Leukaemia UK funded the first service of its kind to offer dedicated counsellor and clinical psychologist support for haematological patients at King's College Hospital in London. Through the Leukaemia UK Mind and Body Team, people affected by blood cancer will routinely receive psychological support where needed. It is hoped that by making emotional support an integral part of everyone’s treatment, psychological problems may be identified early or even avoided altogether. Leukaemia UK hopes to fund more services like these across the UK.

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