Me and myeloma: Greg’s story

Tell us a little bit about yourself.

My name is Greg and I’m 58. I used to work as a neighbourhood management officer for a local council. I took redundancy and retired just around the time of my husband Paul’s diagnosis and the start of the pandemic. I still do some part-time consultancy and personal counselling work. But, primarily now, I do things at home. I walk the dog, I go on holidays, I hang out with Paul. When we got married last September, we asked for experiences rather than gifts – because of our situation we didn’t want things. People really rose to that occasion, and I don’t think I’ve eaten in so many restaurants, been to so many hotels or to so many places ever in my life, and we’re not done yet. We’ve also been taking jewellery classes and we made our wedding rings. It’s been good fun. We’re really popular in the jewellery class because we just work very differently. Paul’s more experimental.

What is your connection to myeloma?

My husband Paul was diagnosed with myeloma in 2020, just before COVID. I had never heard of it before in my life. I’ve learned a lot about it since. We have an agreement where I go to his appointments with his consultant on the basis that two pairs of ears hear things better than one.

I see myself as a husband and as a career at different times. We’ve had quite long conversations about our situation. I didn’t want to be a permanent full-time carer and not be a husband, not be a friend, not be a partner. That was important to me, and I think it’s really easy to let it become all about myeloma and to get drawn straight into the carer role.

What helps you get the support you need?

There’s the Carers Hub in Nottingham and Maggie’s but my friends have been absolutely the first port of call for support. Things like them taking an interest in what my life’s like, taking an interest in me. Am I getting enough to eat or walking enough? And then taking an interest in the disease itself, not the other way around. So the conversation goes, ‘How are you, Greg?’ and then, ‘How is Paul?’. It’s not always about Paul first.

It’s important for me that people understand that we’re two separate people, with two separate relationships to myeloma – both valid. For us to get through this as a family, people need to be asking me questions and Paul questions, but not asking me about him all the time. That shouldn’t be the starting point of the conversation.

The team at Nottingham City Hospital have also been really amazing. They always answer my questions; as much as they answer Paul’s questions. They seem to really understand that his health depends on a good home environment, understanding and assistance when needed.

What advice would you give to someone whose loved one has myeloma?

When someone you love so much is poorly, it changes the way in which you live your life. And to try and live your life as it was pre-diagnosis doesn’t make any sense at all. You really need to have those honest conversations with each other and be prepared to make those shifts. They can be painful and difficult but it’s important to find ways to have these conversations. Do you need me at hospital appointments? When would you like me to visit you in hospital? If you get sick, what do you want me to do? How do you want me to respond to the doctors if you can’t speak?

Another piece of advice is: live your life. Make time for the things you want to do together. You need a life that’s not just defined by myeloma.

And then of course, don’t take it too personally when people who aren’t carers tell you you need to find time for yourself. The carer hears it as, ‘You should be doing more’ or ‘There’s something you’re not doing right’. I don’t think that’s people’s intention when they say that, but it lands on carers or partners in a particular way. It’s very hard to hear that as encouragement. But don’t take that question personally. That person just cares for you.

Has being gay impacted your experience as a husband and carer in any way – positive or negative?

At first, I was really worried about showing Paul affection on the ward and causing some upset. I worried that people wouldn’t be able to handle it, or that another patient wouldn’t like it.

I would show up when Paul was in intensive care and worry I wouldn’t be taken seriously as his – at that time – partner and that it would somehow interfere with his care. There were certainly, in my mind, those niggling worries all the time.

When he was in intensive care in a coma, I wanted him to have the last appointment before bed because I wanted to wash his face, his hands. I wanted to get him ready for bed and do all these very personal things. I wanted to read the newspaper to him or play some music. I ate dinner with him, even if he was unconscious. But the staff were very professional and my experience of the NHS has been very positive. They’ve been really thoughtful and included us both.

Thinking about it, the times where I felt I could really relax in hospital were when I’d notice staff wearing rainbow lanyards or wearing ID badges with rainbows on them. It was reassuring to see. I knew that, in their presence, I could be completely myself.

Since we’ve been married, things seem to have changed a lot for us. Because now I can say I’m the husband rather than the boyfriend or the partner and people have to treat us slightly differently. That’s not to say that we were treated badly beforehand, but they definitely can’t treat us badly now because the law covers us in a particular way. I don’t really like to think about it like that, but you do have to. When you’re writing wills or if you’re trying to get early release from pensions, that really matters. Getting married in many ways has made things a lot easier. There’s no quest anymore. You don’t need to describe your relationship. It’s just answered by that one word.

Close-up photograph of a hand holding a mobile phone.

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