“I had no idea of how much the Hospice could help me and how much I needed that help”

Pictured above: Outpatient Wahida Mahood (2nd from right), with Physiotherapist, Sandie Joy, Complementary Therapist,  Rose Muirhead and Community Nursing Team Lead, Fay Richardson

Forty-five-year-old mum-of-four, Wahida Mahood, from Chesham, had always been the strong one amongst her family and friends – the person everyone turned to with their problems.

In her Asian Muslim community, culture dictates that when you need support, you look for it within your immediate circle. But in February 2015, when she was hit by cancer - and just a month later, a stroke – Wahida carried on as normal for her husband and four children and didn’t ask for help.

It wasn’t until her GP referred her to The Hospice of St Francis that she realised just how much help and support she needed.

Here, she tells her story…

“Having a diagnosis of cancer of the cervix came as a big shock, but suffering a stroke a month later, turned my life upside down.

From working five days a week in a local building society, being a busy mum to four children, as well as a wife, sister, aunty and cousin to our extended Muslim family, my life suddenly became very inward-looking.

The stroke left me with weakness all down my left side. Numbness in my feet and legs meant I couldn’t walk without a very lop-sided gait and although my GP referred me to local clinic for physiotherapy, it was just too much too soon.

My husband Abed and I decided it would be best for us and our children Safiya, then 12, Rahima, 11, Saira, 17, and our son Osman, 20, if I moved in with my sister, Tayba, in Ilford, Essex, so that she could support me through all my radiotherapy treatment at Bart’s Hospital. Abed needed to continue his work as a car trader, the children needed to carry on with their school and college routines and I couldn’t cope on my own.

Even though it was upsetting for us all that we were apart and I worried about them like any mother would, this way they were protected from my illness.

I’ve always been a positive person and the strong one in our family, providing a listening ear to relatives and friends whenever they need help, but now the tables were turned, I didn’t want anyone to feel sorry for me or to think I’d had a rough time - which of course everyone did. I didn’t want any kind of negativity and as far as I was concerned, I thought I was coping really well.

In August, after five months with my sister, I came home to my family and I still remember trying to be as normal as possible, trying to do things for myself, trying to cook and do all the things that any mother would, but I soon realised I couldn’t.

It was my GP in Chesham who suggested I speak to the Hospice. I really wasn’t sure about it at all but I just thought I’d see how it goes. Even the nursing staff at Bart’s were surprised my GP had referred me to a Hospice, but in August last year I met with its Community Nursing Specialist team lead, Fay Richardson, for an assessment - with a view to getting some psychological support and physical rehabilitation.

Even though I’m not the kind of person who does things like that, we talked about what I’d been through and before I knew it, the words – and the tears - just came flooding out. I talked so much and I suddenly realised how I’d been holding everything in. I just needed to be myself, to show my emotions and admit that I’d had a really bad year – but I just hadn’t wanted to do it in front of my family.

Fay was so kind and understanding. She said, “Think what you’ve been like for the whole of this year – give yourself time and don’t expect it to happen all at once.” She knew and understood the things I’d benefit from and the support I needed and with her help, we started setting small goals towards my recovery.

The numbness in my feet, legs and hands was my biggest problem and was really affecting my ability to do anything at home. I felt like a burden on my family - I wasn’t even eating at the same table as them because my limited mobility meant it was easier for me to sit on my own.

I was also worried that the numbness was the cancer spreading to my spine, but Fay immediately phoned the clinical team at Bart’s to relay my concerns, another scan was arranged- which was clear - and I was reassured that it was just a side-effect of the radiotherapy.

With weekly physiotherapy sessions with Sandie in the Hospice’s Spring Centre, and with specially adapted exercises, which I was determined to consolidate at home, I was able to start rebuilding my muscle strength, improve my balance and fitness and make progress with my arm and hand function and walking.

The sessions gave me the confidence to try and each week, Sandie would set me small goals to go home, practise and achieve – whether it be making a bed, preparing a meal or washing up.

Over time, with the help of specialist equipment like a perching stool - a special chair with handles on the side - which I was convinced I didn’t need, I was able to start washing up, cooking and eating with my family again. It was so lovely to start hearing the kids ask again: “What’s for dinner tonight, Mum?” and to be eating as a family once more.

Being able to cook and prepare meals for my family is one of the biggest gifts I have. When I cooked a lentil curry and Safiya, my 13-year-old, said she’d been looking forward to it all day, it was such a proud moment.  Instead of feeling like a sick person, I felt like a wife and mum again.

Before, because I couldn’t walk properly, it was easier to stay indoors and hide away. People stayed away because they thought I was unwell. But Fay persuaded me that I needed to see people, to have different conversations to lift my spirits.

Every two weeks, I started coming to the Spring Centre for complementary therapy massage with Rose - mainly for my feet to help try to regain some sensation, but it’s also lovely to be pampered.

I’ve attended the Fatigue Workshop, which has given me strategies to cope with the impact of fatigue and Fay has even helped me with my Blue Badge parking application, which makes life so much easier for things like hospital appointments. I’ve also had support with financial matters.

I’ve had so many setbacks along the way. In September I was diagnosed with thyroid cancer, which was treated successfully with radiotherapy, and last December I developed peritonitis and had to have my appendix removed. That was a real low point - I just couldn’t understand why it was all happening to me. But the Hospice has helped me through all of it – I don’t know how I would have coped without it.

My cancer is now in remission, my goal is to get back to work and the great thing is I know I’m getting there. Small things have changed everything for me and every day I take a picture of something new I’ve achieved and share it on our family What’s App chat. 

At the beginning of May I was well enough to take a trip to Morocco for four days with my mum and sister. Getting away from it all with the sun on my back was just what I needed and later this Summer, we’re taking a family holiday to Turkey. I can’t wait.

As far as the local Asian Muslim community is concerned, the Hospice is somewhere that you go to die – a place for people who are really seriously ill. But I honestly had no idea of how much it could help me and how much I needed that help.

It’s not in the Asian Muslim culture to seek help beyond your immediate circle of family and friends and while some of my circle has reacted really positively, others are still slightly mystified.

But I’d say to all of them that they just need to take more time to understand what the Hospice does and see the positive that comes out of this place. For me it’s been the most amazing experience and a total eye-opener.”

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