This is the post that I’ve been waiting my whole blogging career to write. When CrabbyCancerMan was first diagnosed with cancer, I found a bunch of overwhelming resources for caregivers for what should be done, but what I really wanted was a check list of “do this now, do this later.” MrAwesome talked me through most of this, and then we added to the list as we needed to – someday, we’ll have a web site with all of this easily accessible and clearly written. But for the moment, I’ll share with you the to-do list I wish we had.
If you’re reading this, then you probably just got the news that no one ever wants to hear. Someone you care dearly about has been diagnosed with cancer, and you will be the primary caregiver. If you are human, what probably happened was that you heard the word “cancer” and then all of the blood rushed into your ears and all you heard after that was Mariah or Charlie Brown’s teacher. If you actually heard any of what was said next, congratulate yourself because you are super-human, at least for this moment. This won’t be the last time.
In the first minute:
– Take a deep breath. Let yourself feel what you are feeling. Give yourself a minute.
In the first five minutes:
– Find a notepad and pen, and start taking notes. The mind is a funny thing, and while you might always remember what you were wearing when you got this news, you will be surprised how quickly you will forget other important details, or worse yet, remember them inaccurately.
– Ask some questions:
– What is the type and stage of the cancer?
– What is the recommended treatment? What are the short and long-term side effects of those recommended treatments?
– Which other doctors need to be met with immediately? And who do you recommend?
– If you do not understand, ask more questions.
– Take copies of any materials offered, and read (skim) them in the first 72 hours. If they’re giving it to you, it probably has some answers in it.
A note on note taking: Write down names (first and last if you can get them), role, time, date and location for every conversation you have. This is the time that all of those good phone message taking skills you were taught as a child are going to pay off. You will want to keep track because you’ll want to remember who was good, who was excellent, who was passable, and who is to be avoided. You will also want to keep track of who you spoke to for billing purposes, and to help clarify any paperwork. This is important, and you should form this habit immediately.
In the next 24 hours:
– You need to have some talks with your patient, including:
– Do you want to get second opinions? Third? Second opinions require more appointments, and delaying treatment until you can decide with whom you will work. However, they are also vital on helping you figure out what kinds of options are out there. Doctors (like anyone else in the world) don’t necessarily know what another doctor will tell you – if they did, he or she would have told you his or herself.
– How public or private do you want to be about this? Some people only tell those who need to know, while others are much more public. MrAwesome set up a Facebook group. We used LotsaHelpingHands as a scheduling and communication tool. Others use e-mail lists, or phone trees. It is up to you, and you are welcome to change this as you go along. You don’t need to write this letter right now – you’ll probably want a little more information from the doctors, and will want to have a sense of what is going to happen – just start the conversation about how you want to handle it.
– Along those lines, who do you want to tell first? In that first day, you may need companionship, distraction or food. Now is the time to call your closest friends and make that happen. Among the people to consider:
– your employers: you’ll need to take some time off of work to deal with this, and even if you don’t want to tell them that it is cancer, you do want to prepare them for what is coming. Also, there may be resources within your company that you didn’t know about which could be useful, including disability benefits, health insurance options, or leave flexibility
– your immediately families (parents/children/siblings): they will want to help. They will also have their own emotions to process regarding the diagnosis. It is likely they would be upset to find out from someone who is not you.
– your clergy: if you are active in a faith community, they may have resources to help you.
– You need to call your health insurance company and tell them what is happening. Find out your out-of-pocket maximum, and if that is per person or per family. Do it today, don’t wait. MrAwesome told me about this on a Saturday night. I waited until Tuesday morning. If I had not waited, I could have saved myself literally over a dozen hours of paperwork. After this experience, I have come to believe that not all health insurance companies are evil – there are some stupid people who work for some of them, but mostly, they want to help you, they want people to get the care they need. They are working their job, just like you work yours. Have some faith.
– Corrillary: If you do not have health insurance, you need to have a conversation with the hospital/medical groups. There are resources for you out there (there are lots of resources for you out there – really), but you do need to ask for them. You don’t have to have that conversation with the financial aid office in the first 36 hours, but you need to think about how you’re going to handle it.
Once the diagnosis happens, things tend to move very, very quickly. The doctors want to move as quickly as possible to prevent the cancer from spreading.
In the next 36 hours:
– Start researching doctors. As you research, consider the kind of cancer and the stage. Which doctor is a specialist? Who comes well-regarded? Who do you know that has gone through this and can make recommendations?
– Talk to a social worker. Whoever gave you the diagnosis should be able to put you in touch with one (or his or her office can). A social worker can point you in the right direction for resources including financial aid, support groups, community resources, charitable organizations that can help you, and much more.
– Also, ask the social worker to put you and your patient in touch with a similarly diagnosed patient who is a few months down the road. Other patients are very helpful in letting you know what to expect for the specific cancer you are dealing with, but it is important that you talk with people who have diagnoses that are as similar as possible – the experience of a 45-year-old female breast cancer patient stage 1 is different from that of a 39-year-old squamous cell carcinoma throat cancer patient with stage 3, or a 3-year-old with Pre-B ALL (Acute Lymphoblastic Leukemia). All of the experiences have things in common, but it is very helpful to talk with someone who has experienced what your patient will go through.
– Make appointments everywhere you want to be seen. Some of the doctors, especially big names at more prestigious hospitals and programs, may have you wait a month or two or more. Make the appointment even if you are not sure you will want it by the time it arrives. You can always cancel the appointment if you find a doctor with whom you are happy.
– A note about calendars and scheduling: If you haven’t already, you may want to use an online calendar service like Google Calendar, so that you and your patient can see all of the appointments that are being made. Don’t forget to plan in travel time, and plan on spending at least an hour at each appointment. You can ask the person scheduling how long the appointments generally take, and if there is a better or worse time of day to see the doctor. If you don’t have one yet, you may want to get a smart phone to make the scheduling easier.
– One last thing to think about: under that category of side effects, spend a little time thinking about patient fertility options. Talk with your doctor about the side effects of the potential treatments and their impact on fertility. If you need to freeze something, it is better to do it before any treatments begin.
This is what helped me through those first few days. After you get through that, you can start to see the shape of things, and figure out which resources will work for you, and which ones you can ignore.
And a final note: this is hard. It takes strength. It takes courage. It takes luck. It takes patience. Everyone has these qualities in them, but when the stakes are so high, we don’t trust ourselves. Trust yourself, trust your patient.
Readers, I welcome your thoughts. I tried to keep this list concise and realistic, but of course everyone’s experience is a little different, and hindsight is 20/20, so it is often we think of something important after the fact.