Blog Update!
For those of you not following me on Facebook, as of the Summer of 2019 I've moved to Central WA, to a tiny mountain town of less than 1,000 people.

I will be covering my exploits here in the Cascades, as I try to further reduce my impact on the environment. With the same attitude, just at a higher altitude!

Saturday, January 12, 2013

What to expect when your loved one has cancer

As some of you know, my husband has a blood cancer. Multiple myeloma, to be exact. Over the last five years, he's undergone constant chemotherapy that has only been interrupted by a year of tandem stem cell transplants. A friend of mine's son was recently diagnosed with leukemia and I had a few words of advice for him but felt that it was worth posting it for everyone's use. As rates of cancer climb in some areas, it's something that will most likely touch your life as well.

So, if your spouse, child or parent has been recently diagnosed with cancer and you find yourself as the primary caregiver, I hope the following with help you deal with what you've been handed.

My Top 10 Tips for Cancer Caregivers:

1. Cancer is a full-time job. Depending on the cancer treatments, which can vary widely, your loved one is potentially looking at several years of various treatments. As the caregiver, you need to put your life on the back-burner to help out. Sometimes you'll need to show up in the morning and hang out all day until their treatment center decides you can go home. Expect a lot of waiting around and frustration. It comes with the territory.

2. Mourn the loss of your/their previous life. All the hopes, dreams and plans you had with your spouse or for your child are gone. The life you once knew is gone. I found this the hardest thing to recover from. You really are mourning for something that no longer can be, so take the time to mourn the loss. You have to adjust to what's generally called the "new normal". In other words, a precarious future. And that sucks.

3. Be their eyes and ears. Every cancer patient needs an advocate. Even if they are not dealing with chemo brain and a myriad of other drug side effects, you need to attend critical visits to the doctor to take notes, remember details and ask questions. The cancer patient, themselves, is often too much in a fog or stunned by what is happening to them to clearly remember what the doctor is telling them. This includes keeping on top of their medications, updating their physicians about their issues and not being afraid to speak up for them.

4. Accept support. Encourage your loved one to ask for and get the physical and emotional support they need. That includes medication to combat nausea from chemotherapy or any other drug they may need to be more comfortable. Cancer treatment is a heinous business and can cause a myriad of side effects. Make sure their palliative needs are being met.

Ensure that their emotional and mental needs are being met as well - encourage them to seek out psychological support from friends, family and professionals to talk about what they are going through. Nobody expects them to bear the burden on their own. Instead of asking them, "how are you feeling today?", ask them if they want to talk about how they are doing. Some days, they'll just want to focus on something else.

5. Accept help. When they are first diagnosed, people will come around asking what they can do to help. Don't turn them away! This was our big mistake. If someone offers to babysit, take them up on it. If someone asks if they can bring over dinner, say yes! My best advice is to create two lists - everyone wants to help so give them something. It makes them feel better and gives them a sense of control. They are hurting too.

Make one list for home - picking the kids up from school, mowing the lawn, doing laundry, making dinner, going food shopping are good places to start. For work - make a list of things that people can do for you like going to meetings and taking notes, whatever works in your environment. You'll need the extra time. Trust me.

6. Fair weather friends and family. Under duress is where your true friends come out. It's hard to deal with another person's sickness. Many can do it over the long haul, but it's not unusual for those you thought were true friends to disappear. Spouses, girlfriends, boyfriends of your loved one may fall away. Cancer is a stressful business and can create too much of a gulf. When faced with the choice of going out and having fun or sitting around with a depressed, vomiting friend or spouse for months on end, well, you know where this is going. Don't expect everyone to hang around.

7. People will say rude things. It's not their fault. They think they are helping. They oftentimes can't emotionally or mentally accept what's happening. They are in permanent denial. They've convinced themselves that it's not a big deal. So, when friends or family members tell you, "he'll be alright" or "she'll be just fine", try not to take it personally. It feels like they are discrediting or undermining the pain and hardship your family member is undergoing, but in reality, I think they just haven't gotten to the acceptance stage yet. And they may never get there.

8. Everyone else's lives will go on. While you are stuck in chemo mode and the roller-coaster of support and possible death, everyone else will be discussing their daily minutiae as if it were the end of the world. So, while your friends sit around discussing how difficult it is to decide what new sofa to buy or how expensive it is to fly to Europe for that 3 week vacation, try to stop yourself from punching them in the face. Yes, their problems aren't cancer, but it's a real concern to them.

9. Living with the unknown. For many cancers, it's never a done deal. There's never an "all clear" or remission. You just have to live life day-to-day. You need to relearn to live your life without planning the future more than a few years or even a few months out. You'll need to live with the pain of thinking that "this might be the last Christmas, or birthday, or summer vacation" that you have with your loved one. Life can become short-sighted, but you'll need to live like you, too, were dying.

10. Take care of yourself. This one is tough because you feel like you don't have the right to complain or say anything negative about what you are going through. You aren't the one with cancer. But you need to take care of your own physical and mental health. Make sure you exercise for stress relief and make sure you have people to talk to about what you are going through. You do have the right complain about what's happening to you. Because cancer sucks for everyone it touches.

If you are looking for more resources on how to help and how to advise others, I highly recommend The Etiquette of Illness: What to Say When You Can't Find the Words.


String Theory said...

Excellent list, thank you for taking the time to write it out. I am certain it will help people.

Anonymous said...

Fantastic list Deanna-- great job of keeping it real!

cbb said...

Yes x10. Been there and several other heinous diseases.
I learned that it's important not to stress about the imagined future. Bad things may, and will, happen, but often not the ones we think will happen, so no use worrying until you know something specific to worry about.
Seize any good times you can. Carpe diem!
Hang in, it's all we can do, anyway.

Laura said...

Where was this post 3 years ago? This is was an excellent post and I really appreciated it's honesty. I'm bookmarking for future reference!

Little Home In The Country said...

Wow. I'm so sorry that you have the knowledge and experience to post that list :( Thank you for typing it out. Your blog and book have been really helpful for our family as we remove toxins from our home.

How is your husband right now? What stage of treatment is he at and what lies ahead for him over the next few months (or do you even know that?)?

May 2013 bring healing for your husband and your whole family....

Jen said...

I'm sorry that your family is enduring cancer. Thank you for your helpful list. Many Blessings.

Crunchy Chicken said...

Little Home - He's participating in a 6 month clinical trial testing the efficacy of a 3 drug regimen. They are hopeful that it will put him in remission, but that remains to be seen.

He'll start month 4 of the treatment this week and hopefully we'll know soon if it's working. It's always one month at a time with his treatment. There are other options out there if he fails this treatment, but there's no magic bullet.

Robyn M. said...

Wow, what a simply amazing post. Thank you for taking the time to put this out there--I know it will be helpful.

Sigrid Schirdewahn said...

Great post! I would add that all this holds true for any long-term illness. Thanks for sharing!

Liana Weiland said...

"All the hopes, dreams and plans you had with your spouse or for your child are gone."

Wow. I disagreed so hard with #2 on this list that I could barely read the rest.

I'm a two-time cancer survivor (bone tumor/loss of limb/relapse with leukemia/stem cell transplant) and I don't think you should EVER mourn for a life that's still being lived. It is flat out ridiculous to say that nothing is going to ever turn out how you planned.

If you are still fighting, then there is always the chance (and often a good chance) that your treatment is going to cure you. Since cancer I have gotten married, worked a dream job, hiked national parks, written books, and more. I'm going to have children. I'm going to have grandchildren.

I understand the message. As a caregiver, you have to give yourself the space to grieve. But to say that all of your hopes and dreams for the future are dashed?

Not so. Not ever.

Laurie Graves said...

Been there, too. And you are so right about living in the short-term. Even when the prognosis is good, the quarterly check-ups are still very stressful. Your other points are excellent as well. For the past few days, I've been thinking about what you wrote. Thanks so much! And best wishes to you and your family.

Laurie Graves said...

Been there, too. And you are so right about living in the short-term. Even when the prognosis is good, the quarterly check-ups are still very stressful. Your other points are excellent as well. For the past few days, I've been thinking about what you wrote. Thanks so much! And best wishes to you and your family.

Greenpa said...

There's my Crunchy. Blunt as a 4x4. Part of your charm. :-)

And effectiveness. I had to help my mother die about 15 years ago; breast cancer. Your observations are spot on, and yes; likely to be helpful to the newcomers.

REALLY good to see some posts from you. I know you're more active on FB - but to me FB is an unnatural act; it's like pulling teeth to follow anything.

Hang in there.

Rachel said...

Amen, sistah. Your list is applicable to every caretaker dealing with a chronic life threatening disease, even if it's not cancer.

The hardest two for me were letting my previous life (aka what I thought my life would be) go in order to accept Dan's and my current, always in flux, state; and even more difficult for me was dealing with fair-weather friends... I hadn't been fair-weather with them, but apparently I'm too much of a handful. For me, it's super hard NOT to be bitter, resentful and angry with those former friends... but then new friends come into my life just when I need them.

Thank you for this post. It makes me feel less batshitcrazy.

Anne said...

I am a leukemia survivor and took care of my mother who lost her battle with ovarian cancer. It isn't easy, no, but im going on 22 years cured. It happens. You just never know. That's what is so difficult...not knowing. Just don't give up! These are amazing points but cancer doesn't have to end the life you knew, it just puts everything on hold.

Sue xx said...

Thank you so much for these words, we need them in our family right now and I will post the link on our daughter's blog. She is 12,000 miles away and we cannot help her but it may uplift her closer family and friends.
Sending my love and best wishes to you and your husband, it's a very difficult experience indeed,

Anonymous said...

Not the best personal experience you want to write about but you give such insightful tips for anyone going through this awful situation. Thanks Deanna.

One of my girlfriends revealed that her cancer spread to her spine and is not letting everyone know except one person in the group. We've ordered groceries delivered to her house while going through chemo a few times before and she feels bad that we'll do it again when she has to go through another around of strong chemo.

How do you HELP those with cancer without being too pushy? I'd really like to help without being a burden.

Unknown said...

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iheartgardening said...

I'm glad you mentioned number 5 about people offering to help out. I sincerely offered help to a girl when I found out she had breast cancer. (I had hoped to make friends with her before I even knew) I had met her the year before at a garden tour at her house. She totally blew me off and never answered my email, not a thanks, nothing. I really meant the offer. I let her know I was unemployed at the time and had all the time in the world to help run errands or whatever and was sad that she didn't even acknowledge it or accept the help. Needless to say with the Seattle freeze that went on, I never made an effort to make friends with her. Lame. If someone offers to help you they probably really mean it.

iheartgardening said...

Oh, and there are people who reach out to friend people in these situations, which I did to you years ago and got blown off by you too, so there are people out there who care and want to be friendly and helpful and there for people in this situation and it is easy to miss those people so don't think too much that people NOT in this situation don't care or are always thinking of which couch they're going to buy. Not true.

lisa said...

That really sucks, Iheartgardening! I hate, hate when I offer help to someone and they can't see past their damn life-threatening disease and acknowledge the fact that I am There. Geez. How selfish. And here's you with all this time, nothing BUT time and that person probably only cared that they might be running Out of time. Sick people suck,

nennycakes said...

iheartgardening? Really? *shakes head*