After attending the FOCUS Program, a preliminary intervention where participants learn about how to live through and beyond cancer, Richard Montmorency said, ‘They helped me put my role as caregiver in perspective. I can support somebody, but I can’t change anything. You have to be accepting, and it’s not your fault if things don’t go right. I felt and saw the sacrifices the other caregivers were making and it made my sacrifice more acceptable [10].’
While caregivers may feel the need to fix the problems of the patient, it is more important to be there to support, listen and validate the feelings of the patient. ‘One of the best things anybody can do [if his partner has been diagnosed with cervical cancer] is to listen to her needs,’ says Julie Walther Scheibel, Med, a counselor based in St. Louis, ‘You want to validate her feelings, and at the same time, provide a balance for any overly negative emotions without saying, “You shouldn’t feel that way [11].”’
Additionally, learning how to manage and cope with cancer as a team can be crucial to the well-being of both patients and loved ones. Developing a concrete, clear action plan of the roles and responsibilities of both the caregiver and patient can help everyone retain a sense of control. Shaundra Hall, a cervical cancer from Phoenix, Arizona, asked her husband to attend medical appointments with her and take notes, ‘This gave him a purpose and a feeling of control and involvement in my situation’ she says [12].
Conversations with your clinician
In the study exploring the experiences of male caregivers of patients with breast and gynecologic cancers, upon diagnosis, all caregivers ‘[…] wanted detailed and specific information about the diagnosis, treatment and management of symptoms, adverse effects, and physical care’ [13]. When information was not provided by clinicians, caregivers expressed frustration and sought out answers on their own. One caregiver said, ‘Not getting the information quickly enough is too frustrating. I never really thought of what is actually going on… but there’s always, you know, questions [14].’
Asking questions about treatment options, enquiring about the side-effects of certain treatments, or even making suggestions as the patient or caregiver can be incredibly intimidating. The image of the infallible doctor who is never supposed to be questioned still is very pervasive in our culture. As an advocate for your loved one, sometimes you have to be persistent and ask challenging questions to obtain information from healthcare providers. As a starting point, here is a list of questions you can ask your doctor about cervical cancer:
- What stage is my cervical cancer?
- How does that affect my choice of treatment?
- What are the pros and cons of the different treatments?
- Do you recommend one particular type of treatment for me?
- Why do you think I should have this treatment?
- What other types of treatment could I have?
- What is chemoradiation?
- Is chemoradiation suitable treatment for me?
- Will this treatment cure my cancer?
- What are the chances that the cancer will come back?
- What will happen if the cancer comes back?
- If the cancer comes back, how will the treatment I choose now affect the treatment I could have in the future?
- What are the side effects of this treatment?
- Are there any long term side effects of this treatment?
- Can I help to prevent myself getting side effects?
- Will I still be able to have children after treatment?
- Is there any way you can help me to keep my ability to get pregnant and have a baby?
- How long will the course of treatment last?
- How long will I be in hospital if I have this treatment?
- For how long will I have to go back and forth to the hospital?
- If I have to travel to and from the hospital can I have help with paying my fares?
- How do I go about getting a second opinion?
- Are there any experimental treatments or trials you would recommend for me?
- Is there a counsellor here I could talk things through with?
- What if I decide not to have treatment?
- How often will you want to see me after my treatment has finished?
- What will happen at these follow up appointments?
- What should I do if I am worried between appointments?
[15] Information taken from Cancer Research UK
References
[10] “Care for the Caregiver.” University of Michigan Comprehensive Cancer Center. University of Michigan Comprehensive Cancer Center, 2012. Web. 10 Nov. 2015.
[11] McCoy, Krishna. “When Your Partner Has Cervical Cancer.” EverydayHealth.com. When Your Partner Has Cervical Cancer, 2 Feb. 2009. Web. 12 Nov. 2015.
[12] ibid.
[13] Lopez, Violeta, Gina Copp, and Alexander Molassiotis. “Male Caregivers of Patients with Breast and Gynecologic Cancer: Experiences from Caring for their Spouses and Partners.” Cancer Nursing 35.6 (2012;2011;): 402-10. Web.
[14] ibid.
[15] “What to Ask Your Doctor about Cervical Cancer Treatment.” What to Ask Your Doctor about Cervical Cancer Treatment. Cancer Research UK, 2 June 2014. Web. 12 Nov. 2015.