Biting My Tongue (Or Letting Others Learn By Themselves)

At one's first cancer diagnosis, you are welcomed shoved into Cancerland, where no one wants to be. You learn about your cancer and probably a fair bit about cancer in general. Eventually you go on to learn more about cancer than you ever cared to know.

You get to the point where you can talk about cancer and its treatment and have a general idea of cancer treatment hell. You also understand staging and what different stages mean. You never wanted to know all this but you do and you can't deny it.

Then someone else you know is diagnosed with cancer. Do you tell them everything you know about cancer? Or, do you bite your tongue and let them learn at their own pace?

I feel strongly about biting my tongue and keeping quiet on this. If someone asks questions, I'll help them with answers but I know I am not a doctor (just a professional patient) so I can't really give advice anyway, except to say 'step away from Dr. Google'.

Part of the trauma of a cancer diagnosis is the giant pile of decisions you need to make. You have to learn a lot of information so you can make informed decisions. I learned that I needed to learn in chunks. When I was facing surgery, what were the surgical options? Then when chemo came along, a new set of decisions. And so forth. I couldn't face any more information at one time.

Also, every cancer is different and everyone's cancer is different even if the diagnosis is the same. I can't make assumptions about someone else's cancer. Nor can I force my knowledge on them. They need to start with their doctor, their prognosis, and their decisions.

The same goes for caregivers. They need to learn as they go along. If they are providing care, ie being a caregiver, they need to get on that bus to Cancerland with the patient and help them as much as they can. If they aren't helping the patient, they are not a caregiver and can go back to whatever they were doing.

A trip to Cancerland should be viewed as a journey of 10 million steps (put that in your pedometer and you are done for the decade) which comes with its own dictionary and encyclopedia and staff of 10,000 providers that you have to decipher. You need a caregiver to hold you hand as you go along and help with all the research and emotional support - even if it comes down to bringing a barf bag after chemo. You can learn together. But call me with any questions and I'll try to help.

Patient's skills

This is one of those weeks where family members are the ones requiring medical care and I am the one providing the care. Well, I do a lot of driving. I do not provide medical care. I provide access to medical care. I have found I know lots about the hospital and dealing with hospitaization.

• I know the best way to get to the hospital to avoid any traffic. Other family members may disagree but I never sit and wait.
• I know how to work the TV/computer in the patient rooms without help. I even know how to deal with the separate key board.
• I know when and where to find the nurse to get the real story.
• I know to prompt the patient to ask for meds or to speak up about issues.
• I know where to park for ER visits and where to find wheel chairs.

One family member referred to me as the frequent flyer of hospitalizations. (I may disagree on the actual number but I have been there far too much.)

Its been a long and stressful week or so. I am not the sick one for once but I am the very tired one. I have been getting home from the hospital way too late at night. Last night I arrived home to find in the mail:

• A hospital bill
• A hospital appointment list
• An explanation of benefits from the insurance company

I was too tired to care.

Today I will go to work for the morning and have my leftover Chinese food for lunch. Then I may stop by the hospital again but what I really want to do is to come home and take a nap.

I have decided you have to be healthy and rested to be a caregiver.

The unsung heroes of modern medicine

We need to take a minute to remember a few things about our medical care. We see our doctors and nurses but what about everyone else?

• If you go to the doctor for a routine appointment, there is a receptionist and nurse and a doctor at the minimum.
• If you are sent for blood work, there is also the lab tech who draws your blood but also the people in the lab who test your blood.
• If you get an x-ray, there is the person who takes the x-ray plus the radiologist who reads them. Plus there are the people who maintain the machines.
• If you go for chemo, there is a receptionist, a nurse to take your vitals and draw blood, a medical oncologist to review your blood counts and recommend chemo doses, the nurse who gives you the infusion, the pharmacist who got all your meds ready.
• If you go for radiation, there is a receptionist, a radiation tech who gives you the radiation, a radiologist who reads your latest CT scan, a nurse who checks in on your and your radiation oncologist who supervises your care.
• If you have an operation there is an anesthesiologist, several nurses, assistant surgeon, etc.
• If you come to the hospital in an ambulance, there will be some EMTs, trauma nurses, a social worker, maybe a respiratory therapist, and more.
• What about residents in training, hospitalists who manage your care why you are an in patient?
• Never mind everyone else at the hospital or medical center who make the food, clean the rooms, coordinate care, schedule procedures, (wake you up to take your vitals in the middle of the night), and more.

Modern medicine is no longer about you and your doctor and the nurse. There are many other people who work to make sure everything is running correctly and patients get the care they need.

We often forget those in the background. This article made me remember them all. We shoudl take a moment to thank them all.

Well Why Didn't We Know?

Someone I know has cancer (wow, now that should be a surprise - us cancer people seem to hang out together a lot). Anyway, he has been dealing with multiple myeloma and it has come back and he has been hospitalized for a few weeks. Mutual friends said 'well why didn't we know this?'. My response was 'maybe he was too focused on being sick and didn't want to keep telling everyone about all his latest ups and downs'. Their reply 'no, that can't be, we should have been told'.

Um, me thinks not. First of all, everyone handles illness differently. And if you are the one with the illness, it is your right to choose not to tell people or maybe you were too sick to tell people and your immediate caregivers were a tad busy caregiving to start emailing and calling. 'Hi, we are between visits in ICU and thought we would start calling everyone to tell you how she's doing. But we really don't know the prognosis and aren't sure what to say but things don't look so good right now.' Yeah, right.

I think the situation is more like 'she's sick again, we told a few people who weren't comfortable sharing someone else's story without knowing more details. And its their story to tell.'

For those people in the world who think they need to be told every one's medical news all the time, cool your jets. Sick people don't really feel like talking on the phone or emailing - and if they are in ICU or something, they just can't. And sometimes they aren't ready to tell their story over and over again.

I will be perfectly honest here I don't tell everything to everyone. My husband knows 99% of my medical crap - I don't tell him the things I forget (see chemo brain kicks in). But no one else does except my doctors and they don't know it all unless they read each other's notes about my visits - and I am not so sure of that part.

I have my blog (yes this blog you are reading) to control how much information I give out. It is my way of being in control of my lovely medical crap. Some things I don't want to talk about, some things I don't need to talk about (do you really care that my cholesterol levels are awesome - in my doctor's words?), some things I am not ready to talk about, and finally some things I am avoiding talking about (like the injections under my knee cap that the very idea of creeps me out and start this week).

So if you didn't know the fine details of someone's medical issues, you can wait until they are ready to tell.

Seeing the other side of cancer

Maybe it should be required training for all those who treat people with cancer, to go through it themselves. There is no graduation or certificate or merit badge for going through cancer and its treatment and the ensuing ups and downs.

I recently attended a 'Cancer People Play Group' at its first meeting. This is a group for the lucky ones of us who are through treatment and still coping with the little 'what if' that niggles the back of your brain when you wake up in the middle of the night. (Its a Play Group not a support group because support groups are for sick people and its not for survivors but for cancer people because we don't like the label of survivor. Its open for new members - leave me a comment if you are interested.) Now that I have gone completely off my original topic with my self serving push for the play group, I will drag myself back on topic. At the play group, we all agreed that there is no graduation and diploma that comes with cancer - you get stuck in second grade for life.

But maybe doctors, nurses, and others who treat us, would benefit from the experience. A doctor at Memorial Sloan Kettering recently wrote about his feelings when it was his wife who was the cancer patient. My husband married me knowing I had had cancer once. Then he held my hand, changed bandages, squeezed drains, and passed me the kleenex through my second diagnosis. Then he became the cancer patient.

Last week when he had his first colonoscopy after his diagnosis, we did talk a little about how different it is on the other side of the table. If your spouse has cancer, you are holding their hand on the little cancer roller coaster from hell, but you get to get off every once in a while and watch them take a few laps with out your support. If you have cancer, you are stuck on the roller coaster for life. When I go to the hospital for my appointments, I can usually hang in there - check in, the nurse takes me to the little room, change into the lovely gown, and I talk to the doctor about me and my issues. Then I go with my husband and the doctor isn't concerned about me but about him. Sometimes I never even get out of the waiting room. Sometimes just that part is stressful.

Medical professionals see a lot of cancer - even if they are not treating a cancer issue - cancer people sprain ankles too - but they all see the little notes on the bottom of the files - history of 'fill in the blank' carcinoma.
But all of a sudden when they are the one coping - I would imagine its very different. I am not sure any training can prepare you for the real thing.

Caregivers and caregiving

Navigating Cancer has just announced the results of their recent Caregivers survey. There are millions of cancer patient surveys out there - what kind of cancer, how long have you had it, what stage at diagnosis, treatment etc. Then there are a few more million surveys and questionnaires on how well you are protecting yourself against cancer through lifestyle, exercise, and eating habits. Caregiver surveys and issues are seldom addressed. Or should I say addressed too infrequently.

Navigating Cancer looked at the issues caregivers face and the emotional, financial, and physical strains they cope with. They surveyed over 300 current and past caregivers - most of whom are spouses or other family members. I can easily compare this with my life in the past three years where my husband was my caregiver during my treatment and I was my husband's caregiver through his surgery and (long) recovery from his colectomy.

It is nice to see in the survey that we are not alone in dealing with the same issues. The number one item that was provided by caregivers is moral support - also known as 'smiling on the outside and crying on the inside'. "Yes, you'll be fine (I really, really, really hope)."

Our big coping mechanism is humor. While I was going through chemo, my husband accompanied me and we would play scrabble while sitting there for hours of infusions. My husband would tell me he liked it when the drugs kicked in and I couldn't form words longer than 2 letters and he would easily win.

But cancer is very isolating as are many other medical ailments. Your caregiver becomes your rock who supports you through the roller coaster of treatment. You don't get to choose your caregiver, they just sort of happen. You know who they are, they know who you are and what you need. But they are greatly under appreciated. They make sure you get to appointments when you can't go by yourself. They change bandages, look at yucky things and tell you they really aren't that bad. They help with drains. They remind you to take your pills. They hold your hand when it hurts.

Go give your caregiver an extra hug for their support.