Put Your Caregiving Team to Work on Finding Resources
When my first husband was diagnosed with metastatic bladder cancer I, like most spouses in that situation, became his primary caregiver. What I didn’t understand was that a caregiver needs to build a caregiving team soon after diagnosis.
A full-time job
I’m not talking about signing people up to deliver meals or recruiting people to give you a day off from caregiving. Those roles are important, too. But what I realized soon into this life-changing trajectory called bladder cancer is that researching bladder cancer – surgeons, medical oncologists, radiation oncologists, urinary diversions, clinical trials, genomic sequencing, immunotherapy, financial assistance programs, support group options, and anything else cancer related – is a full-time job.
How will you have time?
You, as primary caregiver, are unlikely to have time to do this research yourself because you very well may already have a full-time job. And now you have to go to many appointments and procedures. How will you have time to get up to speed on all these topics as well?
What I wish I had done early on was build a team of trusted people (because people really want to help and they don’t know what to do) and delegate certain projects to them. At a minimum, they can get started on research and give you some basic information. If they are skilled or experienced at it, they may find treatments and doctors you would not have had time to find on your own. They may unearth resources you would not have otherwise known about.
Help with the homework
In America, much of the work and research about treating a person’s cancer is outsourced to that person and his or her family. I wish this weren’t the case. A patient and his or her family are least well situated to take on a research project of this magnitude and gravity soon after a cancer diagnosis. But our medical system is one that will funnel us through on a path of least resistance. And sometimes that may not be the best path. Because cancer is truly a matter of life and death and because a less experienced doctor in the beginning could literally shorten a patient’s life, it is worth your time and effort to do some homework. Or have someone do it for you.
So much has changed
I believe this is especially crucial with regard to bladder cancer in 2018. The landscape for treating this disease has changed so drastically in the last two years. As a result, the definition of successful treatment is fluid and highly personalized. So, put someone on your team to research those recent treatment changes. Assign another person to research financial assistance. Cancer.net, a patient-resource created by the American Society of Clinical Oncologists (ASCO), has a page of various financial resources. But just to research them to see if they are relevant to you is a big job. This can be delegated.
Assign someone else to seek out support groups – in person and virtual – for patients and also for caregivers. This person might also research fitness or wellness programs specifically for cancer patients.
An overarching plan
The experience of receiving a diagnosis for someone you love is very much an experience of being in the present moment – doing the next thing that’s in front of you today. And this works well for day-to-day medical appointments and procedures. But there must be an overarching plan and direction.
Cancer is a big project. I think we all arrive at cancer’s door just wanting to get it done. Fix it. Resolve it. Let me go on with my life. Sometimes this happens quickly. Sometimes it happens slowly. Sometimes it doesn’t happen and cancer becomes a chronic and significant part of our lives.
Recognizing how demanding cancer can be
Recognizing upfront just how demanding cancer can be on your life will serve you and your patient well. Maybe it will turn out to not be so demanding and you will be lucky. But if you expect it to be demanding and prepare for it by enlisting the aid of all those people who want to “do something” for you, you will help yourself and your patient tremendously.
Have your views towards bladder removal changed since you were diagnosed?