The latest discussions, tips and advice from the Live Better With cancer community forum…
The Live Better With cancer community forum is an incredible family – every day you share emotional support and help each other with practical tips and advice. Here’s Community Admin EmilyRose’s roundup of some of the latest forum discussions…
Surprising side-effects of cancer treatment
When real people share their personal stories, you often learn surprising things – things that aren’t widely known about or mentioned on official leaflets.
That’s one of the great things about the Live Better With forum. When I asked the community if they’d experienced any unexpected side effects from cancer treatment, the answers were very interesting.
I’d never known, for example, that chemo hair loss can actually be quite painful, as revealed by member Sunshinedaff.
But one of the recurring things that came up was the effect treatment can have on your mental wellbeing. Sadness, forgetfulness, difficulty concentrating and a general sense of ‘cognitive impairment’ (feeling less intelligent) were all mentioned by community members. This ‘chemo brain’ effect can obviously have a big impact on the individual, their career and their family.
Home alone – how do you pass the time?
It’s often overlooked, but one of the cancer treatment ‘side effects’ that affects almost everyone is simply that you have to spend hours and hours at home, often alone.
On the community forum Hessom asked: In between cycles of treatment, or after surgery, you can find yourself spending a lot of time at home alone while recovering. What fun hobbies do you have that can be done at home to help pass the time?
Popular answers from the community included: adult colouring and dot-to-dot books, which members have found surprisingly therapeutic and satisfying, and listening to podcasts (especially the ‘always uplifting’ Oprah’s Super Soul Sunday). Meanwhile, Netflix has made daytime TV much more bearable!
One common theme is the importance of a sense of accomplishing something – even if it’s just something small you do every day, like a bit of gentle decluttering – so that time between treatments or after surgery isn’t ‘wasted’.
Or how about teaching yourself a new skill? We had some great suggestions, including:
- Card making – a favourite hobby of member Gee
- Cartoon drawing – Bker790 is teaching himself to draw funnies
- Playing the guitar – these days there are brilliant apps which mean you can start to teach yourself a musical instrument at home in short, manageable chunks. Member August16 recommends the Fender App for guitar.
- Yoga – another suggestions from August16, who recommends trying a daily yoga app where you only have to do 5 to 15 minutes per session.
We love the idea that time living with cancer can be an opportunity to learn something new.
Ask Me Anything with Jackie Buxton
This week we had a wonderful ‘Ask Me Anything’ on the community forum with Jackie Buxton (@jaxbees).
Jackie is the winner of the 2017 Live Better With Cancer Spotlight Award for Best Cancer Book, Tea and Chemo. As well as a writer, she’s also a writing teacher, blogger and editor – not to mention loyalty card holder at her local oncology unit.
She answered questions on chemo treatment (everything from coping with tastebud changes to boosting endorphins), how and why she wrote her book and much more.
One of the many highlights was her observation about the difficulty of telling her daughters about her diagnosis:
“ I think that the younger children are, the better they are at coping if you can manage to convey that you’re in control of this thing that has happened to you. And you’ll be amazed how normality quickly resumes! I remember being ecstatic that my girls had an argument a few days after I’d been diagnosed – normal life was returning to our home!”