John
Diagnosed with neuroendocrine gastric cancer, John was initially due to go for surgery, and was referred to NHS Ayrshire and Arran’s Healthy and Active Rehabilitation Programme (HARP) in December 2019. In April 2020, surgery was no longer considered to be a viable option, and his treatment became palliative. John attended three HARP classes prior to the pandemic, then received telephone support until he was able to join Rehab outside check-in (ROC) in the autumn.
John’s story
Why were you referred to HARP?
I was introduced to Oighrig [cancer nurse specialist] and she explained that we would put a plan together, and that there would be surgery. She mentioned Jane [HARP pilot lead] and that I would need to be physically fit for surgery, which made sense. I wasn’t the best at doing exercise, because I worked outside and always felt like I got enough.
You came along to the classes at first. What did you think of them?
You’re in for an hour, but it goes so quickly. It was good that it was busy, with lots of volunteers, and people to help you. I knew the first day I would definitely come back. If there was anything you needed, anything to help you, you’d get it. You got a good sweat up, and everyone kept one another going.
What other lifestyle changes did you make in preparation for surgery?
I was definitely more active out with the classes. And I stopped smoking, cut down on alcohol. I did do a lot of walking with my wife. With the alcohol and the smoking, I thought the staff are helping me, I’m going to have to help myself. Doing the classes and the walking kept me positive.
How did lockdown affect you and your treatment?
I was still getting my chemo. There was a good side and a bad side of the lockdown. The fact that the classes were off was a shame, but my wife was furloughed, which was a good result – she was there 24/7, which really helped me. I was also getting the chance to see my son, and my friends and family outdoors.
Was having telephone contact with a physiotherapist helpful?
Definitely. Every couple of weeks someone would phone and ask how I was. It was good and it made me do it. One time I was at my sister-in-law’s and Jane phoned she had me doing a sit-to-stand on the stairs. My wife timed me. Just shows you, even without face-to-face, you can be active with support.
What value did the park visits / walks have?
It really helped, the fact that you could talk, and not just about cancer. It was about the support and the chat. Anything I had an issue with, they dealt with. I met a man there who I knew as a wee boy. I had met him at the classes. It was good to see him again. We chatted, as we have the same cancer.
What message do you have for others who may be faced with your diagnosis in the future?
Have hope, let it sink in, talk about it. Find out at much as you can. When I was told I was terminal, I felt negative, but just take it day-to-day, and keep thinking you’re going to be here the next day. Don’t sit brooding, just keep doing things you enjoy. Or go for a walk, because it does clear your head. All you can do is enjoy the quality of life you can just now. You’ve just got to keep positive.
David
David was diagnosed with oesophageal cancer in September 2021. He was referred to the physiotherapy service at the Beatson West of Scotland Cancer Centre for physical activity advice that month. He received exercise support and advice via video call and telephone before and during his chemotherapy treatment, and in preparation for his subsequent surgery.
David’s story
Were you aware of the importance of physical activity when you received you cancer diagnosis?
Probably not because – I was just sailing through life and not giving it much thought. I knew I was overweight but the cancer diagnosis was a wake up call that I had to make changes.
What aspects of the physiotherapy/physical activity advice were most helpful to you and why?
They get you in a good frame of mind – simple things like advice about activity – everyday activities count towards being active. Now even when it’s raining I get out. It has made me so much more aware of the benefits of being active. Knowing the support was there and someone was available to encourage me to keep going was a massive help – feels like an achievement when you tick off the activity sheet that was given to me. You can also look back at it to see how far you have come.
What changes did you make in order to be in good health for your cancer treatment?
A lifestyle change – everything had to change. Priorities change. I wanted to make sure family were OK first and foremost, their support has been very important. I changed my diet for the better, and I don’t feel like I am missing out on anything. I got active – started off with short walks round the park, gradually increased. Getting out for a walk is also a good chance to get a break from thinking about cancer. I started a strengthening programme. Because of these changes I have lost 34kg so far (I was 145kg).
How do you feel you have benefitted from being physically active?
I am mentally stronger because I have something to work towards. I am physically stronger and more aware of the benefits of taking care of myself. I feel empowered to do things for myself. I also know it will greatly help me be in the best condition for surgery
What advice would you give to others in your situation who have a new cancer diagnosis?
Don’t hide from it; the best way to deal with it is not to be afraid and don’t shut people out. Be as positive as you can, it’s a ladder you are climbing, one step on the ladder at a time. My fitness level was minimum before this. Take care of yourself, being active stimulates your mind and helps de-stress. Knowing you are doing something to help yourself is better than just thinking about it. It also helps you relax at night – you feel like you have achieved something.