As a patient, how do you prepare?

A business leader preparing for a strategic shift begins by gathering resources: preparing for the future, determining and communicating strategy, gathering financial assets, and applying talented teams and workers. But in our personal lives, we rarely think that way. We should.

Planning for medical challenges

I’m in this situation now. My wife will have shoulder surgery in a few days, and as her recovery begins, I will begin radiation treatment for prostate cancer. Like any of you in this situation, we have listened carefully to the doctors and read all the handouts and research about what to expect.

But it strikes me that as patients and consumers, we generally accept such advice — often, while in shock — and then expect doctors to take care of us. We treat our medical problems as misfortunes to be weathered, endured, and overcome, and expect our network of friends and family to come rescue us if we need help.

That is perhaps the right course of action if you have no time to prepare. But what if you do have time to prepare? Do you try to enjoy your last few days of normalcy before the storm hits? Or do you, like the business leader I’ve just described, marshal your resources?

How I’m marshaling my resources

I cannot help my diagnosis, but I’ll be damned if I’m just going to sit and take it. I’m doing things to maximize my chances of success.

Here are the facts I know about my treatment:

  • I will have five radiation treatments a week for five-and-a-half weeks.
  • For each treatment, I will have to lie flat on my back and motionless on a hard, flat surface for 15 minutes — not an easy task because I have chronic back problems.
  • To maximize the effectiveness of the radiation treatment, I must position myself each day in the exact same position I was in when I had my targeting scan and hold that position. (The technicians help with the positioning.)
  • For extra fun, there is “Protocol P”: I have to drink 32 ounces of water or another liquid a half hour before each treatment, to ensure my bladder is in the right position when I’m being irradiated.
  • There are potential side effects, including fatigue that may kick after a few weeks of treatment.

Given that knowledge, here’s how I have marshaled my resources:

  • I had already been working with an extremely talented dietitian on weight loss and reducing blood pressure. We have now redirected our efforts to creating the best possible diet for radiation treatments — high in protein to help me heal, and in fiber to maintain the health of my digestive tract during the radiation. The weight loss goals are less important now (in fact, any significant change in my shape will actually interfere with the treatment), but since I already had this relationship with this coach, I took advantage of it to change to a diet intended to support my treatment.
  • I had already been working with a physical therapist to recover from a back injury. At my request, she has now provided me with stretches I can do (both at home on my own and just before the therapy) to reduce the chances of muscle pain and cramping during the treatment. I am approaching this as an athlete would a competition, and training and conditioning for it.
  • I will practice meditating, to allow me keep my mind occupied while lying flat on the treatment surface.
  • I have contacted my financial advisor and requested liquidation of some investments to prepare for the cost of the treatment. I know what that cost will be because I tapped the expertise of a free financial counselor working with the doctor who diagnosed the cancer. (Regrettably, I’m still a year away from Medicare).
  • I have completed as many household tasks ahead of time as I can; the rest can wait.
  • I have asked my adult children to be aware of the needs my wife and I will likely have and to be prepared to spend some time with us if we need help.
  • I am minimizing time spent with others indoors and masking with my children in common areas, because given the treatments my wife and I are having, getting COVID now would make things much worse.
  • I am completing work on all my client projects except for one ongoing project that I’m committed to over the next several months. This will allow me to maintain my business commitments even as both of us are in treatment or recovery.
  • I am getting emotional support, not just from friends, but from all of you reading this and from my connections on social media.

Prepare

Why am I telling you this?

Because I hope that if you’re ever in a situation where you need to prepare for a big challenge, including a medical challenge, that you won’t think of yourself as a victim. Think of yourself as the CEO of you, and the Co-CEO of your family.

What resources will you apply to prepare yourself for what’s coming?

It’s not just about “fighting” the disease (which was a metaphor I never really understood). It’s about being smart and doing what you can ahead of time. Any notice you have about what’s coming is an asset. Don’t waste it. What are you doing with the time you’ve been given to prepare?

This freakin’ thing may very well overwhelm us in any case. But I’ll be damned if I’m just going to sit around and wait for it.

17 responses to “As a patient, how do you prepare?

  1. Wishing your wife a speedy recovery from her surgery and wishing you a successful radiology treatment. I learned a lot from you about marshaling our resources, which reaffirmed for me the importance of knowing who to call in to help, and not being afraid to reach out, which is something many people have a hard time doing. May 2023 bring you health, happiness and prosperity. Sending lots of positive energy your way.

  2. Single person living alone here: I have had only one major medical procedure, and I had ZERO warning; in fact, I was kept all night in a major medical facility’s local hub with an IV line in my arm and no idea they planned to ambulance me the next morning to the facility’s main campus two hours away! I didn’t have the chance to tell anybody or pack an overnight bag or provide for my animals. And no cell phone at the time either! Luckily for me, the ambulance driver agreed to stop at my house on the way and run in to grab my laptop and charger so I could have a way to deal with some of these issues–including paying my health insurance premium by its due date (which was the next day). I had to do all my research from my hospital bed after the fact. The hero of my ordeal was that ambulance driver, and most definitely NOT any of the medical personnel.

  3. I just finished the treatment you are about to start last Friday. 20 treatments at 5 per week. I found the biggest challenge, despite my efforts to prepare for it, was achieving and then holding a “comfortably full” bladder, particularly when treatment was often delayed by anything from 10 minutes to 40 minutes beyond the planned time. However, I also found that practice makes perfect, and by the end of week two of four I was able to get it right more often than not. If you can practice this before you start, it might help. Another thing I found which helped when lying on the treatment ‘couch’ with a full bladder was music – the NHS unit I was treated in had a Spotify account so each day I’d choose a suitable piece of music and ask them to tee it up and turn it up just as they left the room for the treatment to begin. The focus on the music was a useful distraction as well as making the time go faster. Also, If the radiographers ask you “how are you today” and you are experiencing problems with urinary or bowel function, say so, and take advantage of the medications they can offer you to make things easier. A last thing to mention which I hadn’t given sufficient thought to – once you finish active treatment your body is going to continue to experience the damaging side effects of the radiation. So be prepared for things to get worse after you finish before they get better. I intend and hope that you will find this helpful information – but if you don’t please just delete it. Good luck to you and your wife.

  4. I wish I could be as helpful to you as you were to me, when I needed you this past year. I can only send you my love and admiration.

  5. I underwent radiation a year ago for breast cancer–same thing: 5 days a week for 4 and a half weeks. The way I made it through the dread and drudgery of this new daily routine was to “trick” my mind into associating it with something very pleasant, by always following the treatment with a delicious latte at a coffee place located close to the radiation treatment facility. My entire mental focus was on that coffee experience, an extra treat I afforded myself every day, sitting for about a half hour relaxing at a stunning location (right at the beach on a quiet lagoon). When I think back on my time of treatment now, it’s those peaceful moments I recall the most. So my suggestion is to give yourself a nice, fulfilling little routine to accompany the crummy one, and the whole experience changes focus to something more positive and therefore, doable.

      1. I made a countdown chart for my radiation treatments after cancer surgery in 2021. Checking off each day, especially after the halfway point, made it easier to envision that the end was attainable, as I would mentally compute 60% done / 40% to go, etc. Also, during the treatments, I would think about the bakery treat I would be getting on my way home!

  6. It sounds like you’ve got this well in hand, Josh. Having just been through surgery, I will say the mental preparation was probably the most helpful – learning to calm myself and also visualizing optimal outcomes. But mostly it’s the support of all my friends – friends staying with me, running errands for me, and checking in on me.

  7. Josh, yours is the only blog I read every time it’s published. I appreciate your ideas about writing and ethics and strategy. Getting to know more about you has been slow and gradual, as you have shared relevant details of your life in stories about work. Reading lately about your intensely personal and potentially life-changing news has made me realize in what high esteem I hold you—and I know I’m not alone. I wish you and your wife excellent treatment and full recovery.

  8. Josh, I love the fact that you are sharing your experience openly and asking others to chime in. We don’t talk about this stuff enough, and shouldering it alone makes it harder!

    When I was preparing for my mastectomy and recovery, I ordered a meal delivery service (because I live alone), and had my home deep cleaned. I also reorganized commonly used items so they would be within easy reach, knowing I would have limited mobility during my recovery. This next thing may not apply to you, but I also styled / curled my hair before going into the hospital, and I’m so glad I did! I knew I wouldn’t be able to bathe or shower for some time after surgery, and having good hair during those unwashed days made me feel a lot better.

    The preparation that made the biggest difference to my mental equilibrium was to adopt a stance of radical acceptance and curiosity. I was freaked out by the hospital setting and intensely afraid of having surgery and going under general anesthetic. What would the operating room look like? What would it feel like to go unconscious, and to wake up in a profoundly altered body? I was driving myself crazy with the loss of control and inability to know what to expect. But when I surrendered to curiosity – “What WILL it be like, indeed?! Let’s find out!” – my nervous system calmed right down. I hope this is helpful to someone reading.

    1. I am not very spiritual. But I am very curious. What you said about curiosity resonates with me — that is exactly the approach I am taking: prepare, observe, draw conclusions, adjust, repeat.

      I don’t expect to have the post-surgical challenges that you had, but my wife has already made some adjustments — cutting her long straight hair shorter to make it easier to manage with only one working arm. I’m sure I’ll become her “right-hand man” for a while.

  9. I certainly join others in wishing you and your wife full and easy recoveries. But you’ve identified one reward you’ll get down the road. Medicare. It provides us with a dramatic reduction in health care costs, both in health insurance premiums and out-of-pocket costs, over what we incur before hitting age 65, but even better is that Medicare dramatically reduces the hassles of health care consumption. The only financial question I now ever bother to ask is, “Is this covered by Medicare?”

  10. Best of Luck in your treatment John! Chance favors only the prepared mind, said Louis Pasteur. I wish my wife and I had been as prepared to deal with cancer as you seem to be. Thank you for sharing so openly I am sure your thought process and suggestions will help others.

  11. Josh

    You may not understand “fighting the disease” but I think the approach you’ve taken in arranging for proper treatment shows me you’ve done all you can to give yourself the best chance of overcoming it. Congratulations. And thank you for sharing it with your readers.

    As for KDH’s suggestion “to give yourself a nice, fulfilling little routine to accompany the crummy one”, I’d suggest you continue to post to this blog. Maybe not daily, and maybe not related to your treatment, but WOBS seems to be such a vital part of your life that I think you’d feel a loss if you gave it up while you’re “fighting the disease.” Truth be told, I’d miss it very much too.

    All the best!

    Tom

  12. I assume that all of your treatments are now over. Hopefully, radiation alone solved the cancer problem for you. I truly hope so.. it did not for my late wife who eventually died of metastatic breast cancer. She more than 100 radiation exposures designed to shrink individual tumors that emerged on a weekly basis. I, too, struggled with prostate cancer but it was too advanced to make radiation alone an option. For me, only radical surgery could (and did) Solve the problem. But the physical costs of such surgery are very high.

    Josh, I wish you every success with the outcomes of your radiation. I only wish that other men had the same courage as you in sharing your cancer history. If they did, fewer of us would die with such a potentially debilitating diagnosis.

    Richard

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