Getting over my treatment with group therapy
Tomorrow is the second session of group therapy organized by The Swedish Childhood Cancer Foundation and its project, Maxa Livet. This program is under evaluation by us in these therapy sessions, we’re part of a pilot project, we’re a reference group. Some members are there just because we need enough people to actually have group therapy, which I’m grateful for, since others, like me, are there because we need it. I have tried regular therapy before, but it wasn’t for me. I didn’t like group therapy either; I was very closed down, I didn’t want to share these things with a group of strangers like that. I didn’t even post images on Facebook before 2017 – essentially the only posts I’ve made have been when someone had a birthday. Regular therapy didn’t work though, I always felt like they didn’t understand my issues, that I was having.
Consequently I never did get over my chemotherapy treatment, and every time I’ve been fatigued since my treatment, it’s been following the same pattern. I’m active, then I get tired, I go inactive, I get anxiety attacks because I feel trapped, and then I become depressed. This latest depression was unlike any of the others though, due to its cause being physician’s pharmaceutical error.
Yet, in many ways, this depression could be the best things that have happened to me. It made me realize that although I’ve been surrounded by a lot doctors with a very wide variety of disciplines, they never told me the truth, or didn’t know about the truth themselves, and I never got the information or help I needed, that I didn’t realize existed.
The Revelation of “late side effects”
I’ve always known I got all these side effects from the chemotherapy, it was the only logical reason, but as I’ve said before… There’s nothing in the media, anywhere about this, let alone any information of how common it is with late side effects. Not a single physician ever mentioned late side effects, not even my adult oncologist. Fine, I knew the cause of my issues. It’s pretty simple, all I’d do is look at me prior to the cancer and after. Before the cancer I was athletic, used zero drugs, including alcohol. Would I take 14 different substances every day today without the cancer? No. However, simply knowing the term “late (side) effects” puts things in perspective. It means I’m not alone or a minority. Why then, has the system been so fucking bad when it comes to our treatment?
I’d gotten used to being a special case; I always was. My endocrinologist had me to tests so rare, they only did them twice a year, meaning the nurse had to read the instructions before doing the test. I got used to that.
Then, I got this depression and at the same time, the Swedish medical system started to change, ever so slightly, for survivors. Not for those like me, though, that was made abundantly clear in the radio interview by the child oncologist, who sounds (and IS; I have been exchanging emails with him before and after the interview) frustrated that things haven’t progressed. I would say farther, but yeah, I can’t really do that since they just now took the first step – by gathering statistics.
I didn’t just stand still, making no effort
I didn’t bury my head in the sand for ten years, but I trusted that my oncologist would actually help me if she could, or pass me to someone who could. I mean, it’s Swedish healthcare.. She didn’t, because it wasn’t in her job description up until that point, in 2016. I’ll have to clarify this again with her, but that’s what she said last time. Now, if I wanted to get this verified, I’d have to report her to IVO (Eng), a neutral Swedish agency who investigates mistakes and errors in healthcare. Thing is, she’s the only oncologist following up survivors in my city, and I’m not sure if she’d accept my reasoning for reporting this…
Nevertheless, at least I know the facts now. Without this depression, I never would have started to blog, I’d never have gotten in contact with the Maxa Livet-project, I’d never gone to Lithuania for the YCE. I’d be studying or working, until I got my next fatigue-episode. Yet, it seems cruel that all survivors in a similar situation such as mine should find out in the manner that I did. I had a very severe depression; I never did hurt myself, but I was suicidal-in-thought for a while. Depression isn’t akin to feeling sad; it’s being devoid of any positive feelings, at all. Antidepressants aren’t happy pills, they simply stabilize you and make you “normal”. Depression is a disease and should be treated as such.
If only there were some sort of network, with cables around the nation, or even around the globe, in which journalists could broadcast audio, and if one dare to dream, video and text?! And you could have some sort of news… theater?.. on these devices. Where important events and facts could be presented to the audience. As a means of public service. If only that existed…
Until then, this is that best we’ve got.
Just let’s not forget to strike “dead” in “Dead or Alive” please.
In all seriousness, social media is a great tool in this day and age, however, traditional media has really dropped the ball on this one, at least in Sweden. Social media is not an excuse for traditional media to slack off.
In conclusion, I forgot what my point was because I’m tired. I am cautiously optimistic regarding my depression though, but I’ll get back to you on that in a while.