In sickness and in health: living with illness

When serious illness strikes there’s often just one thing that stops sufferers from crumpling – the unwavering support of their partners

Lindsay Mitcheson and Paul Adams

 Lindsay Mitcheson and Paul Adams Photo: EVA VERMANDEL
 

 By Helen Gent 7:00AM BST 10 Apr 2011

Lyndsay Mitcheson, 43, had her left leg amputated above the knee in August last year after contracting MRSA during a knee replacement operation for arthritis. She lives in York with her two teenage children. Her partner of two years, Paul Adams, 43, a graphic designer, lives in Leeds

LYNDSAY When I met Paul I was walking with sticks and in a lot of pain from the MRSA. We didn’t talk about what was going to happen with my leg but in the back of my mind I knew I was going to lose it. We had grown so close I felt I had to give him the chance to do a runner. I vividly remember the night we discussed it. I told him, ‘This leg is going to go,’ and he just said, ‘OK.’ Paul is the easiest end of easy-going but there were still dark moments when I thought he would leave.

My psychologist advised me to look at myself a lot, so we had a mirror put in the bedroom. The first time I saw myself after the operation was a big shock. It took a while to be comfortable again with Paul, but at the end of the day in that situation it doesn’t really matter how many legs you’ve got.

I still struggle with my body image. Not long after the op we went to St Ives for a break and people were openly staring at me. I felt so bare, so on view. That night Paul and I were having dinner at the hotel, and I had a complete and utter meltdown, sobbing and shaking. He didn’t have a clue what sparked it. I just felt massively insecure.

Paul has taken on a very protective role. He’s always thinking two steps ahead for me. He makes me feel very looked after and cared for. I’m reliant on Paul for going out, and I rely on him emotionally, too. We talk about everything, which helps me tremendously.

Going through this experience together has brought us even closer. I like to think we would have become this close anyway but the caring role that Paul has taken on is something that’s probably unique to this kind of relationship. The funny thing is we met through a dating website and were matched as 100 per cent compatible. I have to say, it was the best £65 I’ve ever spent.

PAUL When we met, Lindsay used crutches and a walking stick and then a couple of months later we were sitting down having a conversation about having her leg off Lyndsay used to be in so much pain with her knee, and after the operation it was like a breath of fresh air.

She was so happy when she put on her prosthetic. She looked taller, confident. When I walked into the bedroom and she was standing there I was like, ‘Oh, wow.’ It looked like Lyndsay.

I remember that day in St Ives. Lyndsay was really quiet and in the middle of the meal she started crying uncontrollably. I had no idea what had brought on such a strong reaction. I didn’t know what to say to make it better, so I just held her hand and made small talk. I thought maybe it might have been my fault. Later, in our room, she said I hadn’t told her that she looked nice.

I’ve been a passenger throughout this whole thing. It’s happened to Lyndsay and it makes me angry that I can’t fix it. But I’ve tried to be there for her. I can tell when Lyndsay is down, or when she’s mulling things over and can’t bring them out.

We talk a lot and I try to help her bring things out and make sense of them. The bottom line is I never thought I’d meet anyone like Lyndsay. Throw in a little bit of adversity and it just paled into insignificance. amputeesinaction.co.uk

Paula Blackman and Rob Aldous
Paula Blackman and Rob Aldous Photo: EVA VERMANDEL

Paula Blackman, 59, was diagnosed with multiple sclerosis in 1990. She has two grown-up daughters from a previous marriage and lives in Nottingham with her partner of 23 years, Rob Aldous, 58, a designer-builder

PAULA I was diagnosed two years after I got together with Rob. I gave Rob the option of splitting up because I knew the MS could get quite nasty, but he said he’d see it through with me and, bless him, he has.

In a way we probably just ignored it to begin with because I was still able to do things. Then five years ago I had a massive attack and was no longer able to walk. Coming out of hospital and going back to a house full of carers was awful. I felt guilty that MS was taking over our home life.

I slept in a hospital bed in the living-room for about three years until Rob adapted the house with a through-the-floor lift up into my bedroom. I spend a lot of time on the bed because I get so tired and I’m often in severe pain. We hardly ever have meals together. Rob brings me up my dinner then goes downstairs to eat. We lead separate lives in the same house.

We used to go on long walks, proper hikes, together but Rob goes on his own now. He goes on holiday alone, too. I can’t pretend that I’m not vaguely jealous, but I don’t resent him going. We don’t have many shared experiences. It’s quite sad for us both.

MS had a tremendous impact on our physical relationship. Most of the time it just didn’t happen because I was so knackered, and it just gradually fizzled out. And my body experiences numbness, burning and soreness, so while being held is emotionally gratifying it can also be painful.

These days the small intimacies we have are Rob massaging my swollen ankles. It’s sad not to have that closeness, but we haven’t tackled it verbally. There’s this feeling that you’re just going to open a can of worms so you tend to let things go.

Rob’s a very good person. I’m lucky that I’ve got him. I think most men would’ve run a mile by now.

ROB The diagnosis was a bit of a bombshell. Paula gave me the option to leave but our relationship was deeper than that. As the MS progressed, it limited what Paula and I could do together. Just to be normal, really.

I sometimes feel it’s not fair if I’m nipping out for a walk and Paula’s stuck at home on the bed. There’s a feeling of guilt for doing things. It feels isolating. I go on holiday to recharge my batteries and it’s nice to have that space, but it would be nice to be there with Paula.

I’ll cook dinner and take it up to Paula. It’s not practical for me to eat in the bedroom with her. She’s on the bed so I have to sit in the wheelchair and I find it difficult to relax there. It would be nice if we could sit down in the living-room and talk.

Romance isn’t totally dead – I still bring Paula a bunch of flowers – but I find it difficult to get as close as we were. It’s sad to think about what we’ve lost as a couple. To think back about what was and what’s gone and what can never come back.

Paula is quite positive and I think if we talked about the MS all the time it would just drag us down. Paula’s on some pretty powerful painkillers and she’s tired a lot of the time but her humour is still there. We laugh a lot together. I think if we didn’t laugh we’d go insane.

Chris Spratt and Gina Hall
Chris Spratt and Gina Hall Photo: EVA VERMANDEL

Chris Spratt, 30, a primary school teacher, was diagnosed with Hodgkin’s lymphoma four years ago. He lives in High Wycombe with his fiancée, Gina Hall, 30, and their three-year-old daughter, Lily. They are expecting their second child in September

CHRIS Gina and I didn’t really talk about the cancer. It was only afterwards, once I was in remission, that she told me how tough it had been for her. I thought we’d been dealing with it in the same way, fairly comfortably, but she said she’d put on a front to stop me worrying.

At the same time I was diagnosed Gina found out she was pregnant. I felt like I wasn’t supporting her and that I was being a bit of a burden. We had a few petty arguments over me not wanting her to come to hospital appointments. I was being pig-headed and stubborn, trying to take back that ‘head of the house’ role.

In a normal relationship you share problems, but Gina had to take on all the responsibility because I wasn’t able to deal with it. All my self-respect was taken away because of the treatment. Even now there’s guilt that I wasn’t able to be the person that I needed to be.

Gina wouldn’t let me use the cancer as an excuse. I still had to do the housework. It would have been so easy for Gina to say, ‘I’ll do it,’ but that would have been the worst thing for me. I could easily have felt sorry for myself, but Gina helped me to stay positive.

I have an enormous amount of respect for just how strong Gina was able to be. She was my rock, my support. In some ways I was quite selfish and it was only afterwards that I realised how it had affected her. It wasn’t just me who was going through cancer; it was Gina, too.

Some people would say that going through something like this makes a relationship stronger, but I think that had we not been super-strong already we wouldn’t have got through it.

The probability now is that the cancer has gone, but there’s always that lingering doubt. It wasn’t until a year or two after the cancer that I was really able to come to terms with what had happened. Not just the cancer, but the 10 months when our life was put on pause. The cancer could come back, but if we live in doubt it will stop us from living our lives now.

GINA I didn’t really know what chemotherapy was until Chris had it. He’d leave the house looking normal and come home from hospital a changed man, quiet, pale and drawn. I found that very hard. I didn’t want him to be like that; I didn’t want him to be ill. Sometimes I’d say to him, ‘Come on, we need to vacuum the house.’ I didn’t let him wallow. I couldn’t bear to see him giving up.

Did he think I was being unfair? Perhaps, but that was my way of coping. Seeing the man that I love physically changing was terrible. I couldn’t watch my mum shave his hair off. He put on a lot of weight, too. That was hard, buying Chris trousers with a 42-inch waist when he used to be a 34 inch.

To me he was still handsome Chris, but looking back at photographs he looked absolutely dreadful. I don’t know if that was a coping mechanism, believing he looked the same.

I never once cried in front of Chris. It was only afterwards that I told him how hard it had been for me. I said to him, ‘I used to watch you running across the road to the shops and worry about you getting run over, then remember you had something inside you that we were both powerless to do anything about.’ He never knew I had those thoughts.

I don’t think the cancer changed anything between us. We had been friends for years before we got together, so we already had a firm foundation. I think we’ve always been strong, and having Lily made us even stronger. We still talk about what we went through.

Cancer doesn’t go away. Even when Chris gets the all-clear it will still be in the back of my mind that it might come back. It would be devastating but as a couple we’d get through it. Our bond is so strong, nothing breaks us. We could get through anything. macmillan.org.uk

http://www.telegraph.co.uk/health/8430450/In-sickness-and-in-health-living-with-illness.html