The latest discussions, tips and advice from the Live Better With cancer community forum...
‘It’s good to read about you brave people and gives me hope that I will come out the other end.’
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 our roundup of some of the latest forum discussions…
Your posts during August highlighted the fact that Live Better With is here for everyone affected by cancer, whether you have had a cancer diagnosis, are going through or have gone through cancer treatment, or you are concerned about or caring for someone with cancer. Several messages were from people who have a loved one with cancer; there were questions about treatment plans, for example, also anxiety, and how best to support someone with cancer.
When someone you love has cancer…
New member, Kaz01, was very concerned about her grandson who has Hodgkin’s lymphoma; she was worried not only about the diagnosis and the uncertainty this brings, but about how her grandson would manage financially:
‘My 19 year old grandson has just been diagnosed and I’m finding it so hard with anxiety as I live 200 miles away from him and his mum (my daughter) is so upset all the time.’
Forum members were quick to offer support, encouragement and practical information. As LouiseJ said:
‘Once a plan of action and treatment is in place it is surprisingly a little easier to deal with. It is all the “unknowns” that carry so much fear and worry.’
LouiseJ also provided some helpful information about financial support for people who are unable to work when they are having cancer treatment and suggested contacting Macmillan Cancer Support:
‘They may very well be able to provide him with some information or direct help where he may be able to access financial support. There is a thing called PIP, Personal Independence Payment, that he could apply for. It is available for those living with a health condition, which cancer obviously is. They are very helpful, and sometimes can actually go through the forms with patients in order to get the application in.’
Meanwhile, Rob had some encouraging words about the possibility of Kaz01’s grandson taking part in a clinical trial:
‘My niece in Texas went on a clinical trial for a similar condition several years ago. It worked out well for her and I hope that your grandson is equally successful.’
If someone you love has cancer but you live too far away to offer hands-on help, we think you’ll find the full thread, which you can read here, reassuring and informative.
Cancer and information overload
New member jojodot highlighted something that many people experience when they have just been diagnosed with cancer. With a treatment plan that involves neoadjuvant chemotherapy, surgery and possibly radiotherapy, she was:’finding all the information overwhelming.’
’It is very scary at first when cancer turns up… it sends everything into a spin, it is hard to focus on anything else.’
Her wise advice to jojodot, was:
‘Try not to think of the whole of it, take it bit by bit, day by day. It is a long road, but doable.’
Sunshinedaff was also able to reassure jojodot over her concerns about seeing her beloved grandchildren when she is having chemo:
‘There are some periods where you will need to be careful, especially during chemo, your immunity will become very low and the risk of picking up infections is high. But that doesn't mean you won't be able to see your grandchildren.’
KitKat has a different type of cancer but is at a similar post-diagnosis stage as jojodot. She suggested that they keep in touch and support each other through treatment, an invitation that jojodot welcomed:
‘It would be lovely if we kept it touch and gave each other a helping hand through this journey we are set on.’
Enabling this kind of supportive connection is another way in which the community forum can help people to live better with cancer. Four members responded to jojodot and her original message turned into a lively online conversation involving 39 comments – and more questions on many related topics, including nail polish. It’s always handy to have an expert on hand and Karen Sieger, a cancer counsellor and Live Better With cancer expert, joined the conversation, offering good advice on nail care during chemo.
We think that this thread – you can read it in full here – is a great example of how helpful sharing information, support and advice can be when you are getting to grips with a cancer diagnosis.
Our cancer experts play a vital role on the forum and Karen is currently inviting members to share their experiences of coping with hospitals stays, especially if they live alone. Tips and advice are most welcome! You can join the discussion here.
Ask the cancer fatigue experts: Dr. Bram Kuiper and Door Vonk, founders of Untire App
Almost 40% of all cancer patients and survivors struggle with tiredness and fatigue as a side effect of cancer and its treatments. They often want to know what causes fatigue and what they can do about it. Cancer-related fatigue (CRF) is not yet fully understood so, finding new and different ways to help cancer patients who are suffering from CRF is very welcome – and this is where the Untire App comes in.
Dr. Bram Kuiper and Door Vonk, together with a team of psychologists, specialists and patients in the field of oncology, developed the Untire App to help cancer patients reduce tiredness, boost energy levels, and improve their quality of life. Find out more about Dr Bram Kuiper, Door Vonk and the Untire App team here.
And you can ask them questions and read their answers to other forum users here.