While most caregivers wouldn't dream of being anywhere else but at the side of their loved one, they often underestimate the strain to their own internal resources. They are taking on more responsibility, they're worried and they often put their own needs last. In many cases they put up a brave front, because after all, they aren't the one that is ill. But this illness has taken hold of them too.
The affects of cancer on caregivers needs more attention. Looking after themselves helps them to be the caregivers that they choose to be. But how can they do this and what can you do to help?
What the Caregiver Can Do
How to Help the Caregiver
I spent some time at a cottage with my family a couple of months after I completed chemotherapy. One evening, the 12 of us were seated at the dining table having dessert. Eyeing the fresh bowl of cherries sitting at the opposite end of the long table, I asked to have the bowl of "cheerios" passed. All eyes were on me and the laughter began.
This wasn't the first time that I made an attempt at a word and the wrong one came out. Fortunately I was able to see the humour in my chemo affected brain, as was my family.
I had noticed changes in my functioning and worried about the affect this might have on my life, I sought out some resources to help ease my mind.
I found the book, Your Brain After Chemo: A Pracitcal Guide to Lifting the Fog and Getting Back Your Focus, by Dan Silverman and Idelle Davidson.
What first attracted me to this book, well after the title, was the description on the inside cover. This is what it says, "Even years after treatment, patients report problems with memory, concentration, multitasking, and word retrieval. As one person put it, 'I've lost my edge.'" These words alone, helped me to normalize some of the "chemo brain" or "brain fog" that I exhibited after treatment.
Now, 12 years post chemo, I still have the occasional challenges. I, however, also received 4 rounds of intrathecal chemotherapy. The way that this is administered is by removing spinal fluid and injecting chemotherapy into the spine. For me, this was a preventative measure so that any lingering cancer cells would not spread to my brain. I've since read, I don't recall where, that the affects of chemotherapy can last up to 20 years post treatment. I wouldn't be surprised if this may hold true for me, given the type of treatment that I received.
Having said this, the affects are minimal and have not altered my life. I've learned to write everything down, just in case something is lost. When the wrong word comes out, which is now rare, I laugh and say that I have chemo brain as my excuse.
Please join us at the upcoming Southwestern Ontario Lymphoma Canada support group meeting. I will be speaking about Understanding the Impact a Cancer Diagnosis has on both the Patient and the Caregiver. Please refer to this link for more information and to register. www.lymphoma.ca/post/southwestern-ontario-chapter-february-meeting
Oncologist: We have the results of the biopsy. It’s cancer.
The conversation continues…
Oncologist: Wah wah wah wah wah
Like the teacher in the Peanuts comic, you hear a voice and you know that there are words being spoken. Yet, it seems almost impossible to distinguish one syllable from the next.
Years later, recalling that moment together with my husband, he shared a completely different version than the one that had been my reality for so long. He filled in pieces of the conversation that I had never heard before. It was like I wasn’t even there.
After dropping the cancer bomb, most likely, your oncologist will give you some preliminary advice and leave you to digest the news.
Once reality has set in and the numbness starts to subside, the questions will come flooding in. Although each situation is unique, there are some suggestions that can be helpful no matter what your circumstances require.
A cancer diagnosis is not usually an immediate medical emergency. There will be more tests and discussions with the oncology team as you explore options.
Try to take things one step at a time. Focus on what is next trying not to let your mind wander too far into the future. I know, easier said than done, but give it your best shot.
Write Down Your Questions
Get yourself a journal. Each time a new question enters your mind, jot it down immediately. You will have so many questions that there are no guarantees you will remember them all when you meet with your oncology team.
Don’t be afraid to ask for information to be repeated or for clarity if you don’t understand. You will hear terms that you’ve probably never heard before. It’s complicated. And, get those questions out from your journal and ask away. You will feel more equipped to face the next steps if you leave with your questions answered.
Use your journal to document what your oncology team tells you. It can be overwhelming. Taking the time to write things down will allow you to recall what was said and provide you with a reference for the future. Years after diagnosis you will still be asked to share details about your health history.
Take Someone With You
Having someone with you to help take notes and remember the details shared in your medical appointments is to your benefit. Often your oncology team will suggest this anyway. They know how much there is to take in, particularly when you may be feeling quite emotional, unwell or fatigued. Even those of you who are fiercely independent will be grateful in the end to have had a second set of ears close by.
That face to face talk with the oncologist is one of the most difficult moments of your life. Your world changes in an instant. Know that in the big picture of your life, it is only a moment. You will get through this phase and move on to the next. Take it one step at a time. Remember to breathe, to be prepared with questions, to ask for answers and to not go it alone.
In the words of Dr. Robert Buckman, “Cancer is a word, not a sentence.”
Contact Soarin’ Cancer Support Services for a complimentary consultation www.cancersupport.ca