Apps Aren't Helpful

I found an article in Cure Magazine (if you have cancer and aren't a subscriber, you are missing out) on this 'cool' new app for people living with cancer, called LivingWith. Its supposed to help those of us with cancer in dealing with their disease and its treatment.

'With the number of moving parts associated with a cancer diagnosis and its treatments, patients now have a “one stop shop” to help them navigate their journey.'

An app? Seriously? How can an app do that? I am skeptical to start. First, are you sick and dealing with your cancer and you need to find an app and start using it to communicate with your friends and family. Also, do they want to use an app too? And are they online all the time so they would see requests and updates. 

'The app allows patients to create a tight-knit circle of friends and families to stay connected and easily update loved ones; send requests to people asking for help with daily tasks; track mood, pain and sleep; and keep track of questions or important information for oncology team appointments.

And its all connected to a website. And what does this website do for the patient? Well it can help the caregiver.

Patients, caregivers and health care teams can download the app for free, using the Apple or Google Play stores, or by visiting the This Is Living With Cancer site – which is the main hub for the program designed to share inspirational stories and offer patients and their caregivers an online tool to help.

Oh, and they can send you selected, or their fancy word 'curated' information. This means they are mining the information they send you and then selecting what to send you. 

“They are able to self-identify their tumor type and then start getting some curated information over time,” said Basavaiah. “It is not just for the patients. It is for the whole team around them: the health team, caregivers, their support network.”'

Did you see that the app wants to connect with 'the health team'? Is your oncologist going to sign up to be on the app with you? Do they seriously think medical professionals have time to check on their patients through an app?

I even downloaded the app to try it out. The first thing it wants is for you to connect with other people. So you need to get your friends and family on it before it can help you. 

I did go to their website to see what was on it, other than pushing the app. I went to the Cancer Specific section and selected breast cancer. They only had links to breastcancer.org, American Cancer Society, and Susan B Komen. That wasn't very helpful. It is depending on other sites to provide the information and doesn't seem to 'curate' an yof it. You still need to dig through those sites for information. And it only had information on nine types of cancer.

I also went to the news portion of their site and it had articles on nutrition and coping with cancer treatment - the fun stuff like nausea, getting enough nutrition when you can't keep anything down, etc. But none of the articles I read were very detailed or provided much solid information.

So I tried it. I was on their website. And I can say I would not bother with it at all. Simply not worth the effort. I think that even if you are someone who is online all the time and just diagnosed with cancer, I am not sure it would be that helpful at all. Nothing seemed to be focused to young people with cancer - who are the most likely to be users of an app.

So my rating is one star out of a possible five. I wouldn't suggest recommending it to anyone. 

Finding Support Resources

In my personal experience the most important thing to do after a 'yucky' diagnosis (after going to the doctor and taking your meds) is to find support resources. I keep saying that the emotional part of you is just as important of the physical side of you and this is yet another example.

First I would ask your doctor for information and then look at the source of the information they give you. For example, at my breast cancer diagnosis I was given a folder of information with resources - including a flyer from the American Cancer Society, and one from a local support organization. Two good places to start. But I was also told about Breastcancer.org which was another great resource.

Second, I would skip Dr Google but would look for information for patients for that ailment. For example, going back to my Rheumatoid Arthritis I found rheumatology.org which is primarily for doctors but also for patients and I found arthritis.org which is more for patients. both provided me good information.

Third, I went back to that other flyer I got from a local support organization at my breast cancer diagnosis. They had support groups! One full of people like me grappling with their cancer diagnosis. What a great place for me to go.

Finally, I found komen.org which had online support groups.... The last piece I needed.

So when you are faced with that yucky diagnosis, work on finding support. Trust me its out there. You just need to find it.

Recently I was told about two young people around 20 who were facing fairly awful cancer diagnoses. They needed help. I quickly recommended a couple of resources for them - primarily Stupidcancer.org. (I love their tag line - we make cancer suck less. If you are offended by that language you are probably too old for them. They primarily work with people from age 15 to 35 or 40.)

It never ceases to amaze me that people with cancer, or something else yucky, try to struggle blindly without any emotional support. Trust me at my second cancer diagnosis, I quickly jumped on the support bandwagon and joined support groups and had a therapist. By the time I was diagnosed with RA and fibromyalgia I already was connected to many support resources.

Trust me your emotions are important....

Why should care needed at a second cancer diagnosis need to be debated?

Last week or so the British Parliament debated whether additional care is needed for patients undergoing a second breast cancer diagnosis. Why should this be any  different than any other cancer diagnosis?

As far as I am concerned, if a patient is diagnosed with a second cancer, it doesn't matter if its the same cancer or a new cancer, the patient needs to have access to all available resources. Why should this even be a discussion? Well it seems that in the UK National Health Service, the patient with the secondary cancer doesn't usually get access to the clinical nurse specialist that was available at their first diagnosis.

When you are faced with a big diagnosis such as cancer, it is important to have as many resources as possible. And it should be up to the patient to decide which resources they want to utilize - and that may be later as opposed to sooner. however the resources should be there. Please do not make the decision for the patient and let them make it for themselves.