I’ve been thinking a lot about the differences this time around versus back in 2006-2007, aside from the obvious: metastatic being stage IV and terminal. And there are definite differences. These are the two most prominent.
Back in 2006-2007 I was all over the internet searching and reading all I found. In some instances I would take the information to my oncologist, who very patiently explained to me why something didn’t apply to me or why the information was misleading or why the information was incorrect. The second effect of all that “research” was how it amped up my anxiety levels — all to my detriment, I might add (stating the obvious here).
This time I have not really been on the internet (or “Doctor Google” as I’ve heard physicians mockingly refer to it as). A dear friend asked me when my next MRI would be and I said I didn’t know. She expressed her surprise that I hadn’t been googling for the answer. The only answer I had for her was about the anxiety. But she made me think. I’ve always been a strong advocate for myself. Why was this different? The only answer I have to that question is that I’ve learned how the internet may not be my friend.
[The answer to that question is that I will get my next MRI/scans at 3 months and in 3-month intervals as long as I’m doing well.]
Then there were the support groups. You met in person or, like me, you found online forums. In person was not always convenient as such groups met during the day or on weekends; time I didn’t have available or didn’t feel physically capable of doing. Online forums were very much a crap shoot – anyone could join up and you couldn’t rely on the information you got through it or even if it was safe to post personal stuff there. Let’s not even go into the conspiracy theories or even the shaming. If there were moderators, I never saw them. A secondary problem was finding an online forum relating to the Canadian medical system. The American system is very odd in comparison and the stories were completely unrelatable, even if, by chance, we did share the same cancer.
Today I have social media, specifically Facebook groups. Both groups I am part of are closed groups – you have to tell them your diagnosis/details before you are allowed in (I’ve selected patient-only groups, family and friends are invited to find their own groups). Both groups have rules you must follow about content and behaviour, and they are well-moderated. But you have to read through the posts yourself to know how helpful they are or what they discuss and if the moderators are active in the group to determine if it’s the right place for you. I was briefly part of one group where chem trails and Trump supporters dominated; holy fluff on the BS I read. I ran from that one!
then versus now
The biggest difference is, of course, I’ve sort of done this rodeo before.
- I know what to expect with side effects — radiation fatigue being one of them.
- How I need to hydrate no matter what protocol I’m on.
- Keeping a regular schedule (same bed time, same rise time).
- How not to freak myself out.
- Not pushing myself to exhaustion.
- Remembering to take the down time I need.
- Accepting offers (of help, of prepared food, etc.).
- Asking for help (though there’s only one instance so far, that will one day change).
- Not rushing to shave my head; the hair thinning or falling out is just part of this process, not something to be hidden.
- Being a lot more open about feelings and effects.
- Learning to be in the present – each day at a time.
I’m sure there’s more to be put on that list, but that’s all I can think of at this moment.
Live. Laugh. Thrive. ❣