What a 22-year-old dreams about? At that age I dreamed about finding a permanent place to live, having enough money to afford the rent and food for my two cats and myself, and getting through the cancer treatments. I had been out of energy for six months, lost 8kgs of weight, and had an infuriating cough for a year. After several examinations I finally got the diagnosis on July 2nd 2010. I learned that I had Hodgkin’s lymphoma, stage 2A with a bulky tumor of size 14cm.
I received ABVD cytostatic drugs eight times, and external beam radiotherapy for a month. My cancer was pretty easily treated, and the doctor called it ”a grateful cancer to treat” and ”a textbook case”. However my life was a mess during and after the treatments: twice I needed to consider stopping my treatments as I was about to be homeless — I couldn’t afford our two-room flat after my roommate moved abroad. It took me over two months and one temporary place to find a home that I could afford.
After the treatments depression took over me and fear was pulling me under the dark waters. I was so alone with my feelings that I thought about committing suicide. I promised myself that if I was in the dark still after the summer, I could do it.
Finally I found the zest for life again and the hoping for death changed to fear of death. Daily I felt like choking, my heart was beating wildly, my hands were sweaty, I couldn’t concentrate and I was sure I wouldn’t get to experience the same things as my coevals. At nights I couldn’t fall asleep so I sipped tea with insecurity until late hours.
Five years later I heard about post-traumatic stress disorder (PTSD) that cancer patients can have, too. That word gave an explanation to symptoms that had no physical reason. Because of my experience I want to share an insight to what cancer patients might have to go through, and what kinds of needs they have.
So how can we improve the patient experience and the quality of life through treatment and recovery? I would start with this trio:
1. The need for psychosocial and peer support
Doctors: When you are telling your patient about the side effects of the treatments, be sure to tell about the possible psychological symptoms that having cancer might cause, too. For example, cancer can trigger post-traumatic stress disorder. Remember that even though the cancer could be treated, your patient still needs psychosocial support. Tell your patients about the possibilities to talk with the hospital’s psychologist or priest, and if needed, guide them to meet with a nutritionist or an occupational therapist. If your patients tell you about symptoms, that are possibly psychosomatic, help them by listening and guiding them forward. If they are treated in the public hospital, it’s more likely, that instead of you they will meet some other doctor the next time. So don’t leave things waiting for their next appointments if you can help even a little.
In Finland, about 30 000 people are diagnosed with cancer every year. Worldwide, the number of new cases is approximately 14 million (2012). To make sure your patients don’t feel abandoned, tell them about the peer support and know the patient organizations even in outline. It’s vital to remind your patients about these, even if they don’t pay interest at first. Also, an application for peer support is needed. It’s good to meet people who’ve experienced the same as you, but the possibility to chat with people at late hours or a far would be great.
2. Easier communication, self reporting and self care guiding
Easier communication with the care team is essential for the patient. Reporting physical and psychological symptoms by phone every time they appear gives more truthful data than filling a questionary once a month. The care team could check the summary together with the patients on their visits, and talk about the symptoms. This way it would be easier to detect the problem and make a referral to psychologist, for example.
Also receiving self care possibilities during and after the treatments could benefit especially those who suffer from heavier side effects. Questions such as: ”What to do if I feel anxious at evening?”, ”How to take care of my physical well being between the treatments?”, ”How to relieve the pain, if my mouth is full of blisters?” and ”How to get enough energy from food?” could be easily answered.
3. Pocket sized Patient File Folder
Naturally I’ve needed to visit other hospitals than the one where my cancer was treated. I’ve been a patient in municipal clinic, Finnish Student Health Care, and once in Australia. Depending on the hospital patient database management system they either have a record of my cancer and how it was treated, or not. (All of the clinics mentioned above use different databases, so no, none of them have it.) If I had my patient file folder, PFF, in my phone, the doctor treating me could receive all the relevant information about my disease. Also knowing where my tumors were and what was their size would help the doctor either to make a referral to specialist or to tell me, that everything is fine.
I’ve been 12 000 kms away from home, laying on an examination bed in Darwin, Australia, listening to that familiar clicking sound that comes from marking the size of the enlarged somethings. ”I’m sorry to tell you, but it looks like your cancer has recurred,” the doctor said. ”You should contact your cancer clinic immediately.” I was told to return home as soon as I could. That I did, and heard the good news in predated follow-up: everything was completely normal. My cancer hadn’t recurred. I learned that I will always have dead tumor tissue in my body, as the lumps have been majestic size.
Pocket sized PFF could save time, money, and additionally patients’ sanity.
The way I see it, in modern cancer care, there is a need for a digital solution that gives psychosocial and peer support, makes communication with the care team easier and also enables self reporting and self care, and has all the patient’s treatment history in it.
I wanted to put my two cents in developing one, so I teamed up with Netmedi, a startup that has created Kaiku® Health application. Kaiku® Health already benefits a great amount of people who have cancer, and we are eager to response to patients’ and health care experts’ needs better. Follow us to keep up with our work!
Written by Matilda Mela, UX & Marketing Designer at NetmediTags: cancer care, digital health, patient experience