Calling Blood Cancer UK gave me renewed hope

I was in hospital with pneumonia when I was diagnosed with chronic lymphocytic leukaemia (CLL). I was told it was early stage and I’d be on watch and wait (no treatment, just monitoring) for a long time. The doctors said that the physical, mental and emotional fatigue I was experiencing would most likely improve as I recovered from the pneumonia. But far from returning to normal, my energy levels gradually got worse and worse, and I had to stop work.

Eighteen months after I was first diagnosed, it got to the point where I was so weak, I could hardly walk at all. Then, shortly after starting treatment, a chicken roll from a corner shop gave me food poisoning. I was admitted to hospital and found myself unable to even get out of bed safely. I was in hospital for several weeks, and at first, I just seemed to be getting worse. I felt awful, emotionally as well as physically.

I rang the Blood Cancer UK support line from my hospital bed, having seen the number on the website. Hearing a sympathetic voice, discussing how other people experience fatigue, and just talking about how I was feeling that particular day was so helpful.

Somehow it instilled just a little bit of hope. We discussed exercises and I agreed to ask the hospital physio if I should restart some bed-based exercises I had learnt when I was an outpatient. She agreed that I should just do a small amount of very gentle exercises twice a day. Just things like lifting my leg up while lying in bed.

Over the next few days not a lot happened. But then the second treatment, far from making me feel weaker, actually made me feel a little stronger. As the number of CLL cells reduced, the exercises were beginning to work. Gradually things improved and I was discharged.

As supportive as friends, family and NHS staff are, sometimes it’s just so helpful to speak to a knowledgeable and compassionate support officer over the phone.

A little optimism is so important, and without trying to make me pretend everything was OK, the person on the other end of the phone helped me to see that things would get better. That renewed motivation was so important for my recovery. I learned that kindness and understanding help fan the flames of hope.

Over the months since that first call, my recovery has continued, though the fatigue has not disappeared. From time to time I have called the support line again, and each time it leaves me feeling encouraged.