By Caitlin Kelly
Some reflections on my having entered — as of June 2018 — a new and sometimes overwhelming world; if useful, please share!
You are not alone
You may certainly feel it as you reel with shock and try to make sense of what will happen to you next. My early June diagnosis of DCIS, (a sort of pre-cancer, even though the word carcinoma does mean cancer!) is one shared annually by 44,000 American women.
You will likely be in shock and feel utterly disoriented
Even if your prognosis, as mine is, is excellent, you’re stunned.
One minute, you assumed you were healthy, the next…you’ve entered cancerland, filled with sights and sounds and sensations both foreign and unwanted, that you may never have experienced.
What the hell is an aromatase inhibitor?
What are my eight tattoos for exactly?
How tired and ill will treatment make me feel?
You face a learning curve
Until you’ve had a biopsy, you don’t know what it feels like, during and afterward. Same for chemo and radiation and other things likely to happen. It’s all new and unfamiliar and a lot to process, physically, emotionally, intellectually — and, in the United States — financially.
Ask as many questions as many times, of as many medical staff — including technicians — as you need, and take notes
It’s complicated stuff!
Don’t ever feel stupid or intimidated or rushed or that your concerns are unimportant. Health care includes feeling cared for, not just surgery and medications.
People who have never had experience with cancer may behave in hurtful ways
Even with the most loving intentions, people may say things (oh, it’s not that bad!) or do things (send you books about cancer, unasked for) that can leave you even more anxious, scared or disoriented.
They may also tell you to “fight” and “battle” — when (if they don’t know the details) this might not even be necessary, or might not be possible. Ignore them!
This is not what you want!
Get off the Internet and listen to your MDs
The first advice my gynecologist gave me — who told me the news by phone — was to not start reading about this on the Internet.
I didn’t and have not and will not.
But I make my living seeking and processing vast amounts of complex information as a journalist — how could I behave this way?
Because I’m human and had to process enough new information as it is!
I also have avoided any detailed conversations about this unless with fellow patients, and not even a lot of that.
Some people will flee
This can be painful. It’s them, not you. As one friend (whose wife died of lung cancer) said: “You don’t know what their vulnerabilities are.”
Some people will step up unexpectedly
This is a great gift.
You will need to let some new people in, even when that feels weird to you
I find this difficult, as someone who’s always been quite private. But without allowing others to know the details of your situation and to comfort you, it’s too hard.
Some people will over-share and overwhelm you with their medical story
Shut them down.
This is not the time for you to hear, process and empathize with others’ details and fears. This is the time for you to focus on your needs. That may feel unkind, even brutal. Just do it.
If at all possible, find a medical team and hospital you like and trust
You will be spending a lot of time in their offices, possibly daily, weekly, monthly and for many years to come. If you like, trust and respect them, you will feel safe — literally — in their hands.
If you have doubts, find a team you feel good about; this is more difficult if you live in a rural area or have poor health insurance, I know.
You’ll be seeing, and see and be touched by, a lot of people you have never met
That’s another stressor right there.
So far, I’ve seen more than a dozen different MDs, multiple technicians and been to two different hospitals. It’s a lot of new people, and different personalities, to cope with at once — in addition to your diagnosis and treatment.
As one friend told me, you’re spending a lot of emotional capital.
Ignore (most) others’ advice!
People will rush to give you all sorts of advice, leads, insights and tips. Everyone’s body is different. Everyone’s tolerance for pain is different.
Just because they or someone they know had a better/worse/horrific/painful outcome, this may not be your experience.
Don’t let their possibly frightening, unhelpful or inaccurate data bombard you while in a weakened physical or emotional state.
Educate a few people about your cancer — and let them do the talking for you
It’s time to conserve all your resources, especially time and energy. People who have not faced cancer, and your specific kind of it (what stage, where are you in treatment, invasive, recurring, metastatic, ER+, etc.) have no clue.
Having to keep explaining things to them can be too tiring and upsetting.
Do whatever comforts you most deeply
That might mean withdrawing from most social events to save your energy. Hugging your kids or pets. Knitting or playing video games or binge-watching TV, prayer and meditation.
Rest as much as possible
Your mind and body are under assault. Naps are your best friend.
You don’t have to be “brave”
People will tell you how brave you are.
You’re just doing what you have to to stay alive, even if (as I have) you might be fearful and crying a lot to a few people. Even a good diagnosis is enough to shake you hard.
Ask for help — and don’t think twice about it!
You may need help getting to and from medical appointments — tests, bloodwork, chemo, whatever. Even if you’re not feeling tired or weak, it is deeply comforting to have a friend or loved one waiting for you when you emerge from whatever it is you faced that day.
Having someone to drive you there and back is a real blessing. Ask for it, and accept it with relief and gratitude. Same for dog-walking, babysitting, food shopping, cooking, laundry.
Love is action.
32 thoughts on “Life in cancerland: 18 tips”
and the fact that you published this and shared it with your reading audience is another very positive action step. you never know who you will reach or how it will help them or someone they care about. very honest and helpful post, caitlin.
Thanks…I have already sold a story to the NYT Well editor about aspects of this experience (which I wrote about here first), so I have put this out into a wide audience.
That feels a little frightening to me (as a private person) but I know for sure that this might be helpful and comforting to others — which is always my goal with my writing, here and elsewhere.
Yes, and that should help you in taking these steps –
We’re here if you need anything from us.
Kind of you!
I mostly need to sleep more right now. And…and some paid work would be nice! 🙂 Jose has a BIG job interview for a FT job this week, so fingers crossed; if he gets it I could stop work.
Good luck to the both of you.
Thanks….I am also hoping for a staff writing job — it would be directly competing with Jose’s employer!
Sounds like fun…and maybe the basis for a book.
Book has become a 4 letter word to me…I have no agent anymore and had 2 proposals shot down this year. Much as I am eager to write one, I am not eager to sell it…
I’m sorry to hear that. If there’s anything I can do to change that, let me know.
Thanks….it’s gotten a lot tougher, and it wasn’t easy to begin with.
I know that feeling.
I doubt there is anything more essential to staying on the mend than sleep (unless you have a concussion. The unwavering quality of your posts over this time shows me that, while it may be diminished, you still spend your energy well. Now than go take a nap.
Holy cow, my typing!
As difficult as this journey is…thank you for sharing.
Thanks. It could be a lot worse, and hoping that never happens — now that is a new fear.
I can understand. We can hope for the best, prepare for the worst, and pray for courage to stand in the storms called life. I know easier said than done. You will get through this!!
Thanks. Just did spin class then radiation.
Yes – try to take care of yourself as much as possible (easy for me to say I know, harder to do). Lots of sleep, lots of whatever makes you laugh and feel good, lots of your favourite comfort foods. Thanks for sharing – I’m going to reblog and pass on your thoughts. Best wishes to you and Jose. ❤
Spent the entire day yesterday on the sofa, reading and resting. It’s not what I wanted to do (hoped to get into the city) but it’s what my body insisted on.
I hope you’re doing well, Caitlin!
I definitely agree about not looking things up on the internet. Usually it doesn’t do anything but fuel our fears. That said, when my mother was seriously ill I found an online support group whose members were very knowledgeable and supportive. It helped me through a very dark time.
Wishing you all the best, and fingers crossed for Jose (I saw your comment about his big job interview).
Glad you found what you needed….this is very very scary stuff and a lot of people just flee when you need them most.
I am doing OK; starting week 2 (of 4) of radiation; zapped 24 seconds on each side then home!
Yes, you can’t always rely on people (I don’t know if the expression “fair weather friends” is common on your side of the Atlantic?). True friends are often few and far between.
Wow, 24 seconds. Amazing to think that something so powerful can happen in so little time. Well, I hope you’re able to rest and relax as much as you can.
I’m typing this from a small but lovely cottage in rural Perthshire, Scotland. Leaves changing colour on the trees, Scottish mist descending over the hills, red squirrels running through the garden… Spending time in nature is a wonderful way to relax! 🙂
Very true. Luckily, my experience has been less serious and perhaps, as a result, less frightening to friends — who have been terrifically supportive.
I know! I lie face down, and I get zapped on one side and then the other, with this HUGE machine (maybe 3 feet wide? a circle) that moves around me. It’s all very odd.
LOVE it! I spent my 12th summer in a stone cottage in Monzievaird, near Crieff. Unlikely but true.
Oh wow! Well, you’ll know the beauty of this part of the world then. 🙂 Monzievaird is just a few miles from where I’m staying.
Is that hilarious?
I loved my time in Scotland. The woman I stayed with, and her daughter, showed me a lot of the local sights. I have not been back since then but am eager to do so….Just have SO much of the world yet to see!
I hear you! There are so many places I want to explore.
Unfortunately, due to illness, I had to cancel my trip to Spain this month. Very disappointing (and I lost half a month’s salary which I’d paid for flights and accommodation). 😦
If you have the opportunity to visit Scotland, I can highly recommend the place where I’m staying.
I would be quite happy with this cottage as a retreat from the world. Ideally, I’d have a city apartment and a country cottage. Well, I can dream!
Oh that’s terrible! I am so so so lucky that this stupid cancer showed up THIS summer — I would lost a ton of $$$$ for flights and trains and hotels last summer when I toured Europe for 6 weeks, It also made me so glad I did it when I had the $ and health — both can change quickly.
Reblogged this on Myblog's Blog and commented:
To all my followers and readers…knowing and understand is 2 different things altogether and acceptance is the most challenging part when being diagnose with this dreadful thing. So if anyone feels this article is beneficial to others do share…tq. have a lovely day.
Thanks! I’ve told my medical team about it as well and hope they’ll share it, as desired.
Pingback: Life in cancerland: 18 tips — Broadside | Kevin Dayhoff Time Flies