The new normal – a carer’s perspective

My husband was diagnosed with multiple myeloma over 15 years ago, in 2002. He was turning 55, which was very young. It changes your life.
I was very angry and very upset when I found out. Even still, I can be angry about it, but I have to put it to one side, because it can dominate your life. I thought that was it that I would be left on my own, because we have no children. It was a complete shock. Even when he was initially diagnosed, I didn’t know anything about blood or haematology, and all I could think was that it was hepatitis C which was rampant at that stage – he had had a blood transfusion back in 1971.

When he was eventually diagnosed with multiple myeloma I had no clue what it was. There was such a lack of information. You think you are the only one. Even when I would meet people in the hospital, I had no idea what to ask. Now it seems to be more well-known, but at that time it wasn’t.

Talking to other people, they really didn’t understand it; they thought if you didn’t have to have an operation, then it was nothing, you were going to be fine. They also think if you look well, then you are well and you’ve gone back to normal. I don’t know what normal is supposed to mean, because your life will never go back to the way it was before.

His treatment was also tough to go through together. When he had his first cycles of chemo, I was worried about whether it would work or not and whether he would be able to get the stem cell transplant. The when he went through the transplant, he was so sick. I had the intention of just visiting him in St James’s but it turned out that I spent the entire three weeks there as I just couldn’t leave him. I found it really hard but they need all the support they can get. We would never have been near hospitals, Maurice had never even been to the GP or taken a day off work and this was a complete change. I was very much his carer in the earlier stages of his disease treatment.
Maurice had to stop working – he was a service manager in a garage, and he had such bad back pain he had to stop. The tiredness was another factor – he could have his breakfast in the morning after getting up and have to go back to sleep.

I work from home and would have been very busy, but that all changed when he was at home all day. I had to cut down my work significantly, I just couldn’t continue the way I had gone on before.
We used to go out two or three times a week, just for a social drink or to catch up with friends. We had to stop doing that as he wasn’t comfortable sitting down for a long period of time, he prefers being at home.
We also used to love walking – we would go on walking holidays to the Alps and places like that, but that had to stop. Maurice instead took up cycling, so we both have electric bikes and would go cycling a lot, weather-permitting. We still try and get away, but we are far more limited. This year we went to Croatia but the weather wasn’t good and Maurice doesn’t do well in the cold or the rain.
I would also try and get away on my own because we both need space at times. You need to remove yourself from the situation and get your head straight. You are always looking out for them, but you need to look out for yourself too.

People still don’t understand what we are going through, and it annoys me at times. They look at him and think he looks perfect, but you know better. People have a cold and they think it is nothing – it may be nothing to them but it is everything to a person with multiple myeloma. Maurice is doing really well at the moment. He only had one relapse about three years ago but his general health is good and I think the fact that he has no other underlying health problems has stood to him. His pain level is now what you’d call acceptable. He is now living well with multiple myeloma.