A few weeks back I read this great post about pro-active care by Dr. Rob Lamberts regarding assumptions made by patients that are not to their benefit. Now, I don’t reckon patients mean to make assumptions, but we can get overwhelmed or tired or freaked out in general, and sometimes it’s just easier to trust that the hospitals have it under control.
But more than once it has been to my benefit to actively collect my medical information and ask questions in regards to my treatment. Moving between countries, managing chemo and planning radiation was all done by asking, knowing, and understanding how the treatment would unfold. Not to forget the fertility stuff, which is basically an exchange with me and the doctors on when and how long I’ll try for a baby vs. stay on hormone therapy.
(Doctor Canada’s words: “Just let me know before you start trying and I’ll order scans. We’ll get you checked out first. “ I was almost in shock by his understanding. . . )
Anyhow. Following on Dr. Lambert’s concept and adding in my own perspective, here’s a quick list of ideas for getting proactive with your treatment despite feeling overwhelmed. When first diagnosed you might not want to deal with this extra stuff and I totally get that. That’s why this is a fairly simple list o things you can do to help make that process of self-managing easier.
1. Ask for copies. Blood tests, scans, diagnosis, imaging, reports – You have a right to it, and there’s no problem with collecting this information. I’ve not met a doctor yet who said, “no way,” when I asked for a copy of the results. If you move or change doctors, having this packet of information at the ready makes life much easier. You can bring these results with you to appointments too.
2. Assign a data manager. This really only works with a spouse or partner who is willing to go with you for most of your appointments/be the one who asks for more details. When I was exhausted and couldn’t think beyond my nausea, Zsolt would pick up the slack and come prepared with a list of questions. (2.5, arrive with a list of questions and work through them, and don’t feel bad about taking that time.) If you have someone how can strategize like that, they are an awesome help.
[Zsolt was a results analysis machine. When my mastectomy happened with the tumour being removed, he analyzed the resulting reports with a fine tooth comb. He was asking the doctors such intelligent questions about membranes and margins . . . I had no idea what they were talking about, but was glad it was all being discussed.]
3. Enjoy the complimentary. Part of self-managing your treatment is to take care of your body & mind beyond hospital appointments. Get to your nearest cancer support centre and speak with some of the facilitators or administrators there. (For me it was a BIG, scary deal to walk into any sort of cancer-centre looking for help. I was freaking nervous, totally uncertain, and not yet accepting my ‘cancer patient’ status. A good support centre gets this experience, and will help you feel comfortable.)
There’s so much you can do to help restore yourself – think gentle yoga, acupuncture, massage therapy, counselling, art classes, Look Good Feel Better, physical training, etc. Much of it is complimentary, and while hospitals don’t often say: GO TO THE CENTER AND GET EXTRA HELP, this is something you can do for yourself.
4. Never hesitate. Don’t feel embarrassed if your side-effects are so wild that your quality of life has evaporated into nothing: instead, contact the hospital, raise the issue and ask for help from your nurse or doctor. Just forget about the embarrassment of being the ‘nagging patient’. You are not nagging, you are actively working with the medical team to ensure your experience is as okay as possible. Go on, call the nurse and tell her the nausea isn’t subsiding . . . see if they can help. (Because they won’t call you first.)
And lastly, though I know it can be so uncomfortable:
5. If you’re feeling uncertain, get a second opinion. If you’re not certain and your doctor is a reasonable person, this shouldn’t be a big deal (despite our fears of insulting people). Back during my treatment I was recommended a ‘gold standard’ of radiation, but upon getting a second opinion, decided to go for a different sort of radiation that meant less time at the hospital (Because I couldn’t stand it any longer!!). The original doctor was enough of a pro that he didn’t mind my looking for possibilities.
So there you have it. The ‘easy on the pressure, just to cover your bases’ list of actively engaging in your care. Once you gain your strength or begin to feel confident within the system, or if your curious right now, do check out Dr Lambert’s list as well.
Have yourself a lovely week – I hope the weather is as good for you as it’s been for me. Gorgeous!
(Plus I just purchased about 3 meters of fabric from IKEA and am super keen to reupholster some kitchen chairs . . . just as soon as I deal with the hundred of staples that are stopping me from ripping off the original fabric, which looks like pea soup.)