When we’re in a distressed state it is really great to have assistance in our day-to-day activities as well as significant support over the long haul. What we are going through, our helpers are also going through. The following are some thoughts in a note from one cancer survivor to a colleague – friend who has recently been diagnosed with cancer.
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Wayland,
This was my response to a dear colleague who has been getting weekly chemo for a blood cancer of some sort. They will be having a bone marrow transplant in a few weeks and asked me to review the note they are sending to businesses that refer clients to them along with a note to the clients they have seen for years at contract jobs. They asked what I thought of the notes and if I had any advice – and as you know, I’ve got opinions about everything:->
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I would pad your time away and err on the side of too much time away vs just enough. I seldom found the doc’s idea of recovery to match mine. The oncology team was thrilled that I was still walking regularly after 2 chemo treatments. The neurosurgeon said I would be back to normal post surgery in 2, maybe 4 months. Turns out it is a 2 yr window for cognitive and visual stuff (lol – guess he forgot I would need that stuff for my job) So, I returned to most of my usual schedule post op 2 months only to find I was sleeping through my three alarms and missing my 10:00 am appointments. Just what I needed, more work to untangle the missed appts. So, I vote for letting everyone know about the latter date you mentioned. I would use your contract place if you have the energy right after the treatment to resume seeing clients. You’ve got lots of admin support there if you need to cancel an afternoon of appointments vs trying to do that yourself. Yeah, think about canceling an afternoon of appointments because your body has a one-off day that you/doc could not have predicted.
As for catching up with clients when you are still in the hospital due to the transplant. …let me suggest you ask for email updates only. That way no matter when your energy peaks you can give the emails your full attention, instead of when you need a power nap at 1:30 pm. Nice to be able to wait to answer email at 3:00 am when, as often happens, you are wide awake. Maybe a standard form/checklist they could use to guide their updates and might make it easy for you to quickly respond or whatever format will be easiest for you if your energy level is running low. I know it is soooooo tempting to try to take advantage of down time given our usual workload as small business owners, but no matter what the docs say about their experience, we have no idea how your body is going to react to this treatment. We don’t know how you are going to react to this treatment. Obviously, I would expect you to bring your usual bubbly enthusiasm to the treatment center, but sometimes it might feel like you are climbing a mountain. For example, hearing your mom needs you in Oregon and you just can’t go piled on top of some fatigue and a bad night’s sleep. What if mild depression is an unforeseen side-effect? About the last thing you may want to do is concentrate on the unexpected such as a complicated client issue.
Will you be sending updates during your treatment? Maybe high-level updates for your colleagues/other staff that can also be shared with clients? Even the clients who don’t know you well will know a major player is missing and be curious. Also, you want to control the narrative of what is being told to clients, friends and family. Like any good kids’ game of Telephone, where a message is passed around a circle and changes w/ each person – your news will be no different. No matter how well intended the staff’s summary is, it is how us humans communicate. Think about the updates I sent, what info was helpful? what not so much? As for frequency of updates, think about how often you would like an update if one of your colleagues was going through this and you didn’t want to bother them or their family with questions – but were really concerned about how they were doing.
and a couple more things
– in my last neighborhood, we found it really helpful for the person undergoing treatment to have a point of contact. Someone who the person trusted, who could understand the medical info and translate it to others…and who was up for being called/emailed by various friends/family about everything from your latest test results to “can we bring over supper?”. Aka someone to run interference for you. Someone your mom can call and feel like she is getting the real low-down, not your – “I’m fine” answers.
– and not only am I going to suggest you control the narrative, but also manage what you would like help with. If you don’t tell folks explicitly, they will do what they think might be helpful…which is often lots of foods. Do you want meals for your husband and daughters? Someone to call your mom regularly and give her updates whether you can or not? Would it help the family to have someone water the plants, take in the mail, etc? I know they are quite capable, so I am just throwing these out as examples. Probably the best gift I got during chemo was expensive shower oil. Something I wouldn’t buy for myself but was an easy way to do some much needed self-care and addressed the dry skin I had from chemo.
-Do you want friends to visit and possibly stay at your home during this time? Visitors – always fun to have, but might give some thought to what will make their stay easy and enjoyable for you and the family. One of the unexpected things I found this last time, was when I felt good I wanted to do my own cooking. Just simple things, but something that reminded me that I wasn’t that far from normal. I had two extroverted friends offer to come and cook for me for a weekend. So hard to say no, but I couldn’t imagine what I would do w/ a freezer full of food as a single person, not to mention the energy needed to enjoy their energy. What I really needed help with was housekeeping. Really wished friends had offered to vacuum, change my sheets, etc or better yet pay for one of my housekeeper’s visits vs sending restaurant gift certificates. (see below for more info about this one).
Obviously, you can’t send a note saying, gee if you want to give me/family something here is our wish list but you get the idea (this might be a way your point of contact can be helpful to all parties. They can send a note out saying “talking to the family, sounds like they would really appreciate xxx). One of my favorite gifts during my second diagnosis was a grocery bag of books that the executive director of my organization gave me. She had wonderfully eclectic taste, so it was like a treasure hunt looking at the books. A stack of books that I didn’t have to buy and didn’t have to return to the library anytime soon. So fun. What else might be fun or of a comfort to you? As you know from our conversations, for out-of-town friends I asked for bad jokes and family videos. I’ve found so often friends are hesitant to tell you the good or bad things happening in their lives because they either don’t want to upset you or don’t want you to feel bad because they are doing well. Totally get their concern, but I found my heart missed hearing about their lives, it was only my body that was having trouble. (lol – were they going to catch me up on everything at end of my treatment? Or leave it to my wild imagination to fill in the blanks?) As with the cooking, I missed hearing about “normal” life – about how their kids were doing, gossip about their jobs and details of their favorite niece’s wedding. Such a great distraction to the messiness that I was going through. It gave me moments to smile and especially feel like I was still part of the world. The videos were fun because I could see my friends and hear their voices (a big deal when you can’t have folks visit due to low immunity). Loved all the grandbaby videos of first steps, silly songs, etc.
And a note about gift certificates for restaurants, etc. As wonderful as it was to have far-away friends send Door Dash cards, I found I usually couldn’t eat the restaurant food that was available. I was surprised no one asked before they sent gift certificates what kind of restaurants I/family liked – and how far it was from my home. I got a gift certificate for Barnes and Noble which was great because the store wasn’t far from my church….and it was easy to order online. Someone sent a Starbuck’s card and that is when I realized the closest one in my neighborhood was 5 miles away…and I seldom go to Starbucks, so a little more difficult to use than might be expected. Turned out there was a popular coffee shop and a wonderful diner within walking distance of my home that was great not only for me but also for out-of-town guests to grab a quick bite. Unfortunately, no one checked, so no gift certificates for either. I also got general gift cards which I really appreciated but was surprised to find a couple could only be used online. So I could not use them at the farmers’ market or small restaurants as they were not set up for online ordering. All things that are easy to work around- when I felt well, but not so easy when I couldn’t leave the house or wanted to go places that were familiar.
Kate Bowler has a great 8 min clip on being a caretaker and ways to connect with folks when they are ill. Well worth watching not only for caretakers and supportive friends but also for those dealing with health issues. For the video:
https://katebowler.com/guide/caregiving-care-package/ .
hugs –
Now we would like to hear from you –
If you’ve had a serious medical event or have or continue to manage a difficult chronic disease, what has been helpful to you when you weren’t feeling well?
Until I can figure out a simple way for you to enter your thoughts, response, ideas about this chapter please email them to me at: [email protected]