Cliff shares his experience of caring for his wife Eve.

Lymphoma, just a word. OK, I had a vague idea what it was, but how did it affect people? Where did it come from? I really had no idea. And then it came into my life. Slowly at first, getting out of breath for example, but this was probably down to gradually getting older. Like others, I just didn’t want to accept it, so ignore the changes as they push their way into our lives.

It was back in the 1990s and as the months passed it began to make its presence felt more and more, and in other ways. Tiredness began to creep in, fatigue, every day, then weight loss and pain ‘deep in the bones’. This was beginning to get a bit serious now so I suggested that she should have a word with our doctor.

Hang on a moment, she? Who’s she? Well she was my wife Eve, and all these symptoms were her symptoms, not mine. Little did we know it, but lymphoma was about to become a very big part of both our lives. We were about to learn a lot more about it. So, here’s my story, from both sides, not just hers as a patient but mine as a carer.

What followed then was the usual progression; a visit to our doctor, a follow-up visit to a consultant, some tests and then the news that she had low-grade non-Hodgkin lymphoma. This news brought the first and by far the biggest problem that I had to deal with as her carer. Eve and I are different; to me a glass is half full but to Eve it’s half empty. Whereas I would be positive, believing there was a solution to any problem, Eve was the complete opposite. As an example, our younger son was living and working in Dubai at the time and we used to visit him every year. But when I raised the subject of our next visit her response was ‘I can’t go to Dubai, I’ll never see Chris again.’

I was in the hospital right at the start when her consultant said, ‘Well Eve, you and I are going to be seeing a lot of each other’. I could see that this was his way of putting people newly diagnosed a little at ease. But not with my wife, no way! And the irony was that Eve actually worked in the hospital as a medical secretary. She knew this consultant and knew him to be very good at his job, reliable and dependable. The first thing I did was give up my commitments so I could be with her all the time. I was self-employed so I was able to run my business from home. For a while things went well, even though those negative thoughts were always there. It was early days, but somehow we seemed to be managing, until along came the next problem, Eve’s ‘See, I told you so!’ moment. She had been having chemotherapy on a regular basis and a blood test revealed that she was really low on red cells. Her superb medical team explained she just needed a blood transfusion, but the next week the red cell count seemed to be down again and she needed another blood transfusion.

“Eve’s half-empty glass re-appeared and I began to realise that being a carer was not quite as simple as I’d imagined it being.

But her team had been here before, and after a series of tests a scan showed the cause of this problem. Her spleen was greatly enlarged and was not functioning properly. Basically it was eating up all the red cells. The answer was to remove the spleen and apparently with permanent antibiotics people can function without a spleen. So a few days later it was removed and the operation was a complete success. This was to be the turning point. For Eve, because she could see that it had worked and there were to be no more blood transfusions, so as she began to feel better some of the negativity disappeared. For me, suddenly being a carer was a whole lot easier.

It was about this time that Lymphoma Action (then known as the Lymphoma Association) was recommended as an organisation that could help us. I made contact and I am very glad I did as they could not have been more helpful. They had information about Eve’s specific lymphoma, all of which made life easier for both of us. But most useful, my enquiry happened to coincide with a meeting that was about to take place, so we went along. And there we met lots of other people who were in exactly the same boat as Eve, and moreover had been, for many years. She suddenly realised that she was not alone in this. This made my job as her carer so much easier.

As she became more positive, we began to make plans for holidays once more, for visits to our son in Dubai. In fact we visited him every year for another ten years until he returned to the UK. Yes, the ‘half empty glass’ factor was still there, for example whenever we had to see her consultant for the follow-up assessments. She was convinced he would tell her that the lymphoma was back with a vengeance, but he never did. These consultations began as monthly, then every three months, then every six months, until finally once a year, for several years. Eventually her consultant told her that he really didn’t need to see her again and to my surprise, she accepted it!

As the months and years progressed so caring for her gradually got easier and life returned to normal. But at the beginning caring was certainly a massive commitment, it wasn’t just the physical elements but also the mental pressures; trying to find ways of getting into her mind to try to ease her worries.

“The transition from being a husband to a carer was difficult. Being a carer is life-changing; it is a 24 hours, seven-days-a-week role.

Things like joint decisions, for example, become a thing of the past because as the carer you have to make the decisions, small and large. But I am just so glad that I was there for her.

It would be lovely to say that we are living a happy and contented life together, but sadly my experience as her carer back then was to come in very useful when twenty years later, Eve was diagnosed with Alzheimer’s disease. That, of course, is another story, but I was able to care for her for four and a half years, the last two and a half being 24/7, when I did everything for her. Importantly though, we were together, she was at home with me for all that time, apart from the last ten days of her life. She had gone into a nursing home for two weeks’ respite care but passed away before the two weeks were up. My days as a carer were over.

So, be positive, make the most of every moment, live life to the full, and when you read other people’s stories remember that’s just one side of the story. Often, in the background there’ll be someone else, a carer, coping in a different way maybe, but part of the story.