Experiences of followers
If you have cancer yourself
An acquaintance of mine was told she had cancer when I was in the midst of a treatment process myself. I wanted to know how she was doing and was happy to follow her experiences in Stamps. I didn't want to call, because I was too far away from her for that. Funnily enough, I derived a lot of support from her posts. I recognised a lot of what she described. The tension for results, the feeling when the chemo enters your body, the art of enjoying daily moments of happiness. I also saw all the nice reactions she got to her updates. Should I ever need another treatment myself, I will definitely communicate with my friends via Stamps too.
Sharing with those you love
Our friendship dates back to our student days in Wageningen. So we've known each other for an awfully long time. For more than forty years. When my friend got cancer last year, I got to know her even better. She shared her medical and personal story in the app Stamps. She shared her thoughts, feelings and emotions almost daily and described them in short concise stories. Always larded with appropriate photos of what had brought her that day or what brought her back to the past. An ideal way, at a time when you are introspective because of circumstances, to still be able to share a lot with people you love. And a great way to keep them with you that way, to bond with them. I miss the blogs. But her journey to health is over and has actually lasted long enough.
Showing commitment when things are tough
It was a huge shock when I heard that my former colleague's cancer had returned. I had known her for years and, thanks to social media, we were still in touch. I found it very difficult to react to that terrible news. What should you say and what can you do? Which words hit home and which words should you really not use? That is why it was a huge help to me that my former colleague started her ‘Journey to Health’ on the app Stamps. I could follow how it all went. How she was feeling and what she wanted to share and what not. For me, it was the way to show my commitment. The reaction option to her daily updates gave me the opportunity to let myself be heard in a targeted way. If there was no update, I knew she had nothing to say for a while. And when an update did come, I could react again. By clicking a ‘heart’ or by giving a short reaction. That way I could show my commitment and support. My former colleague could see that my wife and I sympathised intensely with her.
Remote sympathy
My colleague unfortunately received bad news last year. Friends, family, acquaintances and colleagues could follow her cancer treatment in a special app. In the app, she describes in a special and intense way what she is going through, how she is feeling, how she is bracing herself for the treatment (including eating well and gosh, how sporty she is!) and who accompanies her during the stages, by e.g. visiting, walking or being her driver. This she describes with beautiful words and illustrates with photos. I could sit down and read at a time that suited me. Sometimes I read 1 story, but there was sometimes a week when I had not found the peace to read her stories with attention and then I caught up. I'm not good at always responding directly, but did leave a comment from time to time. The benefit of this app? Her story, a patient's story, was the focus and the stories were ‘bundled’, I could easily ‘log in’. At that moment, I felt I was close, sympathised with her from a distance, but how powerless I felt at times.
When your mum gets cancer
Last year, my mother was once again diagnosed with cancer. I am a student at Erasmus University and have been living away from home for a few years. For me, it is difficult to call every day, let alone come home. When she was diagnosed three years ago, I found it difficult to gauge how she was doing. On the one hand, this was because we did not have daily contact. On the other hand, it was also because there was sometimes a barrier with me to ask. After all, I didn't want to burden her with questions that she probably got a lot of anyway on such an unpleasant subject. Last year, she posted a daily blog explaining how she was doing. This was ideal for me. I personally really liked that through her blogs I got an idea of her state of mind. Which can be quite volatile in people on heavy medication. Because of the blogs, I could assess this well and knew, for example, when it was a good time to go home or make a phone call. Another advantage I found is that people close to me could also read her blogs. For me, it was also sometimes difficult to talk about my mother's illness when I was asked about it.
Without Stamps, I would have been less involved
To our shock, a year clubmate's mother was told that she had breast cancer and would be going through a tough medical process. We, as friends, naturally wanted to support her daughter as much as possible during this period. But she logically found it difficult to keep us constantly updated on how she and her mother were doing. Stamps offered a solution. This app allowed me to follow her mother's ‘journey to health’ in a very personal way. Because I knew what was going on, it was easier to talk about it with our friend. If she had driven her mother to a treatment, or if they had taken a walk together, I could ask about it. Without Stamps, I would have been less involved. Besides, it was also inspiring to follow her mother's journey to health and I could send her the occasional heart or message via the app. In short, Stamps allowed us, the friend group, to better support our friend and her mother.
You don't want to be a disaster tourist
Hoe kun je je interesse tonen als een dierbare iets vreselijks over komt? Je wilt geen ramptoerist zijn en ook niet twee keer hetzelfde vragen, omdat je dingen zoals medische termen vergeet. Deze vragen speelden door mijn hoofd toen een goede vriendin helaas weer de diagnose kanker kreeg. De vorige keren probeerde ik mijn interesse te tonen door periodiek een bericht via WhatsApp te sturen. Dat voelde afstandelijk maar ik durfde ook niet meteen te bellen. Zij zou immers wel wat anders aan haar hoofd hebben, dacht ik. En wat als ze de telefoon wel opnam en mij zou overladen met allemaal medische termen? Ik vond het lastig om op een goede manier contact te zoeken. Ik wilde echt weten wat er speelde, hoe het met haar ging en of ik nog ergens mee kon helpen. Gelukkig had zij de app STAMPS ontdekt, waarmee zij haar reis naar volledig herstel ging beschrijven. Bij ieder nieuw bericht kon ik meteen reageren en zo mijn betrokkenheid tonen. Ik zag ook de enorme support van andere vrienden en haar familie. In de app kon ik rustig oudere berichten teruglezen en daardoor haar medische verhaal wat beter begrijpen. Ik las wat het met haar deed en waar zij wel en niet behoefte aan had. Zo was een leuke kaart en bloemetje snel gestuurd omdat ik inmiddels wist dat zij daar heel blij mee was.
How do you let people know you are thinking about someone?
Via mijn moeder hoorde ik de diagnose van mijn tante. Ik wilde haar gelijk laten weten dat ik aan haar dacht en contact met haar hebben. Lastig, aangezien ze waarschijnlijk al zoveel berichtjes en belletjes kreeg. Niet snel daarna hoorde ik van haar initiatief om haar reis naar gezondheid vast te leggen in een app. Hierdoor had ik het gevoel dat ik haar kon steunen en op de hoogte was van alles wat er gebeurde, zonder dat ik het gevoel had dat ik haar tot last was. Zelf woon ik niet meer bij mijn ouders en krijg ik niet alles mee van wat er bij hen gebeurt. Ik hoorde dan ook wat verlaat van haar nieuwe diagnose. Dat gaf toch een vervelend gevoel. Het voelde als een grote omweg dat ik iedere keer via mijn ouders te horen kreeg hoe het de afgelopen periode met mijn tante ging. Via haar app kon ik gelukkig zien wat ze allemaal meemaakte, met wie en hoe ze zich voelde. Wat ik persoonlijk heel fijn vond was dat niet elk gesprek met mijn ouders begon met: hoe gaat het met mijn tante? Haar reis bijhouden was ook prettig voor wanneer ik haar sprak of zag. Dan ben je toch meer op de hoogte van waar zij behoefte aan heeft. Door haar reis rechtstreeks mee te maken, was de drempel voor mij veel lager om er voor haar te zijn.
Turned on push notifications this time though
When a good friend told me she had cancer and was about to embark on an intensive medical journey full of courage, I immediately felt I wanted to support her. I so wanted to keep up to date with what she was going through, the ups and downs. At the same time, the realisation dawned on me that I probably wouldn't be the only one, and if she had to answer everyone every time, it would be a day's work for her. That did not seem like a good idea because during this period it was extra important for her to be in control, to choose her own moments to tell everyone who sympathised with her how she was doing, what was on her mind and what she was going through. She started her ‘travelogue’ for which I immediately signed up. Usually I immediately click that I don't want to receive push notifications. A tip: in this case, do so so that you are up to date with the latest messages and can let people know and feel your involvement by responding.
Ik vond het fijn om op deze manier mee te kunnen en mogen reizen.
How do you stay engaged?
When someone close to you, who is not part of your family or immediate circle of friends, falls ill and goes through a long process, it is always difficult for me to keep in touch. Not because I am such a jerk, I think; rather because I quickly think that an illness is very private and someone is busy enough recovering and keeping friends and family informed. Such a person, in my mind, is not keen on maintaining all kinds of ‘second-line’ contacts. This is actually strange, because when I really think about it, almost everyone will appreciate it if contact is kept, even, or especially, if it is done by someone who is not immediately very close. I found that following someone via an app helped me tremendously in keeping in touch. I stayed informed and was able to respond without feeling like I was imposing myself or intruding on their privacy. On the contrary, it was handy to be able to very quickly read the latest status and respond, wherever I was in the world. With a short message or an emoticon, just letting people know that you are still there and that you are of course thinking about them, that was very valuable for me and probably also very supportive for the person concerned.
