Mumtaz's Dying Matters Awareness Week story

Mumtaz arrived in the UK in 1976 as a newly qualified doctor – and found herself in Leeds, where she and the ‘very handsome’ Rasheeque met:

“They needed doctors in this country then, so they would send us a month's invitation and a GMC number. So I just arrived. I didn't know anything about England. It was my first flight! And there was a job going in Leeds.

"All my friends said, if there's a job going in Leeds, pick it, because it's got a very nice cricket ground and we're all very keen on cricket. I got the job…and met my husband there too."

Mumtaz says that because both she and Rasheeque were doctors, they approached illness in a very matter of fact way. When Rasheeque found out that he had become unwell, they used very direct language to talk about it:

“He used to go to his [healthcare] appointments on his own, because I was working. It was 2014, and one day we were sat in a café having coffee. He said, “oh, I've been given the diagnosis of kidney cancer. Some people, after they get kidney cancer, develop this thing called multisystem atrophy (MSA). I'll have to have the kidney out.” 

Whilst many illnesses are now relatively well understood, that was not the case with MSA:

“Even I didn't know much about it, Rasheeque had to explain it to me. I started looking into MSA, but there was not a lot of information on it. I spoke to my colleagues and nobody had heard about it."

Talking about diagnoses with family can be extremely challenging. But because they were both medics, Mumtaz says that their usage of direct language seemed helpful:

“We just talked openly about everything. We sat them down and said, 'Dad's got cancer. He's going for a kidney operation.'"

But even with their medical background, Mumtaz describes how the proud Rasheeque – a very athletic person – found it difficult at points to be completely open about his illness, even with the people closest to him:

“He played tennis, golf, lots of stuff after work. And various friends started reporting back to me saying, ‘did Rasheeque tell you he'd fallen over backwards on the golf course?’ I said, no, he never did. And he had driven himself home. So that was when we started thinking, ‘what's going on?’ 

"The symptoms came on quite rapidly. He started falling, he crashed the car, all sorts."

Mumtaz says that she was ‘very cross’ with Rasheeque for not being honest with her about his illness: 

“I was screaming at him when he came home, like, how can you do this? So after that, he started telling me. I explained that it's better to know than not know. He didn't think seriously about it. But gradually, he became more open."

After symptoms started to develop further, Mumtaz says that it became clear – if not that Rasheeque’s illness was incurable – that their family needed to be closer together:

“By 2015, my two daughters were living in London and driving up the M1 for four hours every Saturday morning. They started begging him to move to London so they could help me with his care, because eventually he wasn’t able to walk or speak properly. 

"Gradually, all the symptoms came on, but eventually we did move to London. It was a big thing for us because we had lived in the same house for 20 years. The kids had grown up there. 

"But we knew that things were only going to get worse. The fact that Rasheeque actually agreed to move was because the kids were desperate to help, and he was obviously concerned about me."

A referral to a specialist resulted in some difficult conversations taking place, between the couple and the doctors, and their children. Mumtaz says that these were handled well – and that the healthcare professionals were ‘amazing’:

“Our lovely GP was very, very helpful. He referred us straight away to the UCH (University College Hospital, in London), for Rasheeque’s inability to balance: he would stand up and suddenly fall backwards. Then he couldn't speak properly. And then his writing became very small (‘micrographia’). The consultant there sat us down for more than an hour and explained everything.

"We were very open about what was going on. Our children knew everything…we didn't hide anything. It wouldn’t have been fair on anyone. 

"The doctors were very open about everything that could happen."

In 2016, Mumtaz says that Rasheeque’s GP suggested that he go to North London Hospice’s Wellbeing Centre in Barrowell Green:

“Rasheeque said, 'no way, I'm not going to a hospice!'

"But the first time we entered that building, it was just such a beautiful, peaceful atmosphere, and there was a nurse who was interviewing new patients. Magnus. I still remember him, and I just adored him because he was so wonderful. He sat us down and talked to us as a family. I remember my younger daughter had come with us that day." 

The way that we talk about dying really does matter. And the profound effect that language can have on someone was brought to the fore when the hospice nurse, Magnus, connected with Rasheeque:

“We went into this room and he started asking Rasheeque various questions, and he was suddenly telling him all his internal thoughts. I don't know how the questions must have been so good that he just lost his thing about, ‘I'm not telling anyone anything how I feel’. Me and my daughter were looking at each other and saying, ‘what's happened to dad here?!’

Mumtaz says that it was a brilliant moment when Rasheeque started talking openly about how he felt: 

“There was a huge change in my husband's attitude. And it turned out that it was about his dignity and being independent, because he didn't want to depend on anyone for going to the toilet. 

"We heard things that we had never heard him say at home, like how he felt about his condition, how helpless he felt, and how, in a way, he was angry with himself because he couldn’t do the things he wanted to do."

In 2021, after complications from a secondary cancer in his lungs, Rasheeque died at North Middlesex Hospital. 

Whilst there is no ‘right’ or ‘wrong’ way to deal with talking about dying, Mumtaz firmly believes that having a high level of empathy is the best place to start: 

“I think since I've lost Rasheeque, I know that putting myself in that person's shoes is the best way. Because we're all so different. 

"I think after having gone through what I've gone through with my husband and the doctors and the medical people, I feel that honesty is the best policy. 

"It’s also to see how that person would want to be treated, because we all feel differently about illnesses. Some people like to be brave and be as it is, whereas other people like to be sympathised with."

Mumtaz adds that her and Rasheeque’s experience with the hospice showed how powerful language can be: 

“I think the language the professionals use can really change the conversation."

Thank you to Mumtaz for sharing her and Rasheeque’s story for Dying Matters Awareness Week.