“Although it was technically ‘out of hours’ – Rennie Grove’s 24-hour service meant we could ring straight away and ask for help and advice.”
Mahmuda Ahmed battled cancer for nine years and received care in her own home from the Rennie Grove nurses for the last 18 months of her life. Her husband, Iqbal, explains why this meant so much to the whole family:
“When Mahmuda was first diagnosed with breast cancer in her late twenties, our youngest daughter was only nine months old. But my wife – she fought the cancer from the outset. She was such a very strong woman; I saw that in her from the beginning to the end of this battle with the disease.
“In 2013 she received the all-clear after her original diagnosis back in 2008. But three years later she became very tired and was coughing for weeks on end - finding it hard to breathe. In December that year we were told the cancer had returned – she had secondary cancer and there was fluid building up in her lungs.
“There were things we could do to alleviate the symptoms – but we knew at this stage there would be no cure. We managed OK but it was very reassuring to have Rennie Grove’s support. The nurses visited all the time and they helped with so many things over the 18 months they were in our lives. They organised a blue badge to make our frequent hospital visits easier. The whole right side of Mahmuda’s body was affected by the cancer and so her mobility was greatly reduced. We had to visit Luton & Dunstable hospital where our oncologist was based and where Mahmuda would have the fluid drained from her lungs. And we travelled regularly to Mount Vernon for radiotherapy treatment. Being able to park in a disabled space made things so much easier for both of us during these visits.
“Rennie Grove has its own Occupational Therapy team and they worked with the charity’s Hospice at Home nurses to procure equipment to make our lives easier at home too. While Mahmuda was still able to sleep upstairs, they arranged for a special device so that I could help her sit up in bed more easily. They also sourced a walking frame and bath chair; arranged for a stair lift to be fitted and in the last few days of her life, brought a hospital bed into our sitting room so she could spend her final days at home.
“The Rennie Grove team also liaised with the local council to try and expedite some adaptations to the house that would help on a practical level. We were hoping to have a driveway with a dropped kerb and a downstairs bathroom with a shower, because it was getting harder and harder for Mahmuda to bathe and for me to manoeuvre her in the wheelchair and into the car. Despite the charity’s interventions, these works were so delayed that Mahmuda sadly passed away before they were completed.
“It’s often the practical issues that get overlooked when families are dealing with cancer. It’s so important for patients to be able to wash regularly. Their skin can become very soft and delicate and then itchy if not bathed and moisturised frequently. Once it was no longer practical or safe for Mahmuda to have a bath, we would spend hours getting her to her parents’ house so she could shower. She would need to rest once we got there before she could shower, then rest again afterwards so the whole process could take four or five hours.
“As well as helping us with the practicalities, Rennie Grove understood the emotional side of things. They went above and beyond practical, medical care: one of the nurses even donated a nearly new wheelchair to us that had belonged to her relative. And they worked with other charitable organisations to arrange grants so that we could get new bedding for Mahmuda and take the children on an amazing trip to Legoland thanks to the Willow Foundation. We went in August – only a month before she passed away. I knew she was struggling but she handled everything so well – she just wanted the children to be happy and we made so many good memories that day.
“And when we received the devastating news that Mahmuda’s cancer had spread to her brain, the nurses showed their amazing ability to know just what someone needed on an emotional level. That day the nurse simply sat with Mahmuda while she cried. Then, when she was ready, Mahmuda talked to the nurse about how she would break the news to the children and other family members and the nurse supported her and put us in touch with the charity’s Family Support Service.
“Medically, all the support we received was perfect. Our oncologist was lovely; our GP and District Nurses were responsive and supportive and the Rennie Grove nurses tied it all together, liaising with all the people involved in Mahmuda’s care and always available to reassure and help us, any time of the day or night. They helped to get the levels of Mahmuda’s pain relief right so she was comfortable but alert. They helped with other symptoms too: her nausea, altered taste sensation, extreme fatigue as well as supporting us with the side effects of her treatment. Mahmuda’s condition meant she suffered from hypercalcaemia (the levels of calcium in her blood were too high) which could lead to anything from sickness to muscle weakness. The nurses helped us manage this too – and some of the problems caused by the spread of the cancer compressing her spinal cord. They arranged for us to have ‘just in case’ medication at home so that if her condition deteriorated quickly they could be on hand to administer the necessary medication almost immediately.
“When Mahmuda’s cancer returned and we realised it was spreading to other organs like her lungs and liver, we talked with the nurses about where we’d prefer Mahmuda to spend her final days when the time came. Initially we thought perhaps a hospice would be the best place – but as time went on and we realised we could cope at home with the support of Rennie Grove and all the other people involved in her care – we decided we would stay at home. She was happy to be at home and it meant the whole family could spend more time together. It was already hard for me overseeing the school run; backwards and forwards all the time with three children. This way the children could see her whenever they wanted to, which meant so much to all of us.
“We were very lucky because when she passed away peacefully, in the hospital bed they’d brought into our sitting room, everyone was there – all the family: our three children, my wife’s parents, her brother and sister, our nephews. I don’t know but I think if she had been in a hospice or a hospital – maybe only a few of us could have been there.
“I’ll always marvel at how strong Mahmuda remained throughout. Her condition deteriorated noticeably early one Sunday evening. Although it was technically ‘out of hours’ – Rennie Grove’s 24-hour service meant we could ring straight away and ask for help and advice. The nurses agreed the time had come to settle Mahmuda in the sitting room so they came out to us and helped me get her downstairs and into the hospital bed. They set up a syringe driver to administer pain relief as she could no longer swallow her oral medication. During the next three days I rang them every day and they would come straight away and make sure she was settled, reassuring me and taking time to support other members of the family who had joined us at home. The day she died they were here from 6am till 9:30am – then returned after she had passed away to talk us through the next steps. The GP also visited us to certify the death so that we could bury Mahmuda the following day.
“We were very happy with all the medical support we received during Mahmuda’s illness – but we wouldn’t have had the confidence to care for her at home right up until the end had it not been for Rennie Grove.
Mahmuda was determined to keep living her life, making sure our children were happy, for as long as she possibly could. And Rennie Grove helped her do that. I know they’re still here to help me and the children deal with a future without Mahmuda and for that – and for all their help over the last 18 months – I am very, very grateful.”