How being on the move has helped our cancer recovery
Macmillan’s Move More NI programme is making a real difference to people fighting back from cancer. A Belfast mum being treated for breast cancer and a Bangor grandfather living with a brain tumour explain to Una Brankin how it has benefited them both.
Leanne McConnell and David Barr are feeling the benefits of Move More NI, an empowering physical activity project aimed at improving the lives of local people living with cancer.
The scheme was launched recently at the Girdwood Community Hub in Belfast by Macmillan Cancer Support, in partnership with GLL (Greenwich Leisure Limited), a charitable social enterprise that operates 14 leisure facilities across Belfast under the Better brand.
Move More NI is funded by Macmillan, working along with physical activity providers, local councils and health and social care trusts, to support people living with cancer who need to improve their health and wellbeing.
Many people living with cancer want to make positive changes to their lives and taking steps to have a healthier lifestyle can be a big part of this.
Move More NI aims to ensure everyone living with cancer is aware of the benefits of physical activity and is enabled to choose to become and to stay active at a level that’s right for them. There are 63,000 people living with cancer in NI and almost one in two of us will experience cancer at some point in our life.
Heather Monteverde, head of services for Macmillan in Northern Ireland, says: “Physical activity is safe during and after most types of cancer treatment and can help to reduce the side-effects of this treatment, prevent the occurrence of other long-term conditions, and reduce the risk of cancer spreading or returning.
“We are delighted that Move More NI is now available in the Belfast City Council area.”
'I'd wondered if I'd ever walk again ... the other day I managed without a crutch!'
Less than a year after her breast cancer diagnosis, social care worker Leanne McConnell (41) was temporarily paralysed by unrelated Cauda Equina syndrome, which is caused by damage to the nerves behind the base of the spinal cord. The mother-of-four is being helped to regain her strength through Macmillan's Move More initiative and its fitness experts. Originally from Donegal, Leanne lives in north Belfast with her husband Brendan, a car sales executive, and their four children, Caoimhe (20), who is studying criminology at Queen's University, Ella (15), Mia (9) and toddler Finn, who is 22 months old. Leanne says:
I always said when I turn 40 it will be my year, but ironically it turned out to be so bad. At one stage I wondered if I would ever walk again. I've always had a bad back and the Cauda Equina syndrome is caused by wear and tear - and I've had four children. It was just over four weeks ago when it began. I had this terrible pain, then numbness and I lost control of my bladder.
There's a window of 12 hours before the nerve endings shut down so I had to have emergency surgery. While I was in the Royal, I was paralysed for nine days. I still have partial paralysis in my right foot and numb legs, but I'm up and about again, with the help of Macmillan and my fantastic husband and kids.
It was just very bad luck but you have to get on with it. Funnily enough, it was a relief that it wasn't more cancer.
I was always OCD about checking myself because my mum had breast cancer 12 years ago. I'd already been at the cancer centre four times in six months to get checked out. This time, my GP said she couldn't feel anything but I could, so she sent me for a mammogram to pacify me. I'd got my husband to come with me, thinking it would be fine and he could take me for lunch afterwards.
So, I had the mammogram, then a biopsy. Forty minutes later, the consultant told me it was stage two ductal carcinoma cancer. I went into shock. I asked him if I was going to die - he said no, it was really early and very treatable.
Brendan was in shock too and when we walked out I had a panic attack for the first time in my life.
My whole chest closed in. I told Caoimhe, the eldest, first. It really broke her at the start but she stepped up and ran the house for me. The wee ones were okay; they knew granny had the same thing and that she got better. My mum is amazing - I get my stamina from her.
Mine is a hormonal cancer. Maybe the surge of hormones through my body when I had Finn quite late had some effect; I don't know. I had a lumpectomy and a breast reduction at the same time - I'd always wanted one, so that was the silver lining. The radiotherapy afterwards led to a lympoderma swelling under my arm but fortunately the tests showed the cancer hadn't spread to my lymph nodes.
I'm originally from Donegal so I don't have that wider support network around me, and when you go through something like this it shakes the wheat from the chaff - you know who your friends are. It's too much for some and they step back. It's not contagious!
At one stage, I thought 'Why me?' And then, 'Why not me? I'm not so special. And if anyone can get through it, I can'. I didn't pray but a lot of people did for me, even the tradesmen who were doing our extension at the time. If it's sending positive vibes - bring it on. I think my nana, who has passed away, was looking out for me too. I just had this gut feeling I was going to be okay.
I'd gone to the GP about something else but I asked her to examine me, almost as an after-thought. If she hadn't sent me to the City Hospital, I could be six feet under now.
I'm on Tamoxifen for five to 10 years. There are no side-effects but with the Cauda Equina Syndrome, your muscle tone goes. I'm not able to train but I can swim lengths and I'm working with a physio to repair the damage. I have my crutch in the car, but I only take it out to go round the shopping centre. I've a major limp, but I was super excited yesterday when I could manage without the crutch. The Move More programme is a crucial part of my therapy, for my mental health too. Now, I'm ready to take on the world, if I could only get my foot to work properly. The paralysis in my right leg lessens every week.
I'd always trained a lot and when I couldn't walk without a crutch, I thought 'How can I ever get back to the gym now?'
But I've been able to do so through Move More. My trainer Marty said 'I'll help you' and that was it. No more sitting in my old PJs, festering. It's like having your own personal trainer and it's good craic too."
‘I had to stay awake during brain surgery ... now I go to the gym and swim weekly’
David Barr (67) spent Christmas 2015 in hospital, having surgery on a stage-four brain tumour, while he remained awake. The retired fitter now walks with the aid of an ambulator, the tumour having impaired the left side of his body. A strong advocate of Macmillan’s Move More programme, David lives in Bangor with his second wife, Liz, a childminder. He has three children from his first marriage, and two young grandchildren. Dave says:
I always loved walking but I wasn’t able to after the brain tumour affected my left side. It happened on December 22, 2015. My co-ordination and balance hadn’t been great and they just went.
I got to A&E at the Ulster Hospital — I used to work there, fitting all the heating systems and so on. They thought I’d had a small stroke until they did an MRI and found a tumour on the brain.
I had to stay awake for the brain surgery. My head was clamped to the table with a tight band and they froze my skull. I could hear the drill going when they made the hole to get at the tumour — I recognised the whine and the scream of the tools from being around engineering all my life. It sounds worse than it is. Some people panic when they are clamped down. I got through it all right.
The operation was successful — they reckon they got between 90 and 95% of the tumour out, which is a very good result. The doctors were surprised when I said I’d had no real pain afterwards. Just about two on the scale to 10. I’d describe it as more like discomfort.
I had to have radiotherapy and chemotherapy together, then chemo on its own. I was never nauseous and I got through it all without any breaks, which the doctor said was unusual. I was just tired.
My brain was a bombsite on the scan with all the aggressive treatment but the tumour has shrunk and got duller. I’ve check-ups every three or four months. The health service has been great, from day one. I think, if you’re critical of the health service, you’ve never been really ill.
When you are unwell, you have to have a positive attitude. Don’t dwell on the difficulties. One thing I learned was how important it is to visit people in hospital — you don’t realise what it’s like until you’re lying there waiting for someone to come around the corner.
When I got out of hospital, I tried to keep active — I get cabin fever sitting around the house — but it was hard. Now, I go to the swimming pool once a week with the Move Me co-ordinator, Eimear. She steers, I put the noodle on the rubber ring and kick my feet. I can do a few lengths, too. It really lifts the spirits and you feel great after you shower and change.
It won’t make you better but it helps you progress. I’m going to the gym now too, not to be Mr Universe but just to improve my quality of life. Both Macmillan and Marie Curie have given me amazing support.
It’s very easy to sit around doing nothing when you get out of hospital, but the exercise really makes a difference. You sleep better, you eat better. Your quality of life improves.
I highly recommend Move More to anyone. It’s fantastic when you’ve been ill.”