By Carmen Powell
So someone you love has metastatic breast cancer? Welcome to your new world; one that has so many issues and complexities you may need a suitcase to pack them in. And you may find that you need someone to help you unpack those issues from time to time. If you live outside of a major city centre (like I do), you also may need luck finding the right support for your loved one.
Picture it like this. In season four of Sex and the City, Carrie has to leave her beloved Manhattan to go to Aidan’s cabin upstate where she feels stranded, alone and confused. Well, lets just say I can relate. Finding appropriate resources to deal with my mom’s metastatic breast cancer (and its collateral damage) outside of the city is like Carrie trying to hail a taxi or get a decent cocktail up there in Suffern, NY.
My mom’s breast cancer recurred as metastatic in 2013. She was 57. I was 32 and my youngest son was just five months old. As a family we spent the first year frozen in fear. Once my mom seemed to be doing better, more stable and responding well to her treatment, we breathed a collective sigh of relief. We started to have that (tantalizing but dangerous) sense of hope that maybe, just maybe she would be able to stay on this treatment.. Alas, this was not meant to be and the cancer progressed to her liver, which threw us into a tailspin and made us realize we needed support . Not just to sort out the complicated family issues and emotions, but to ensure that my mom had the support that she needed to navigate this disease.
It made sense to start with my sister, who is a registered nurse and works in the public health system here in Alberta. We figured her knowledge of the system and connections could find us a “perfect little package of counselling” for my mom, maybe a support group and someone to work with our family to help us support her and prepare for what the future holds, together. Well, we were wrong. Even with her knowledge of the system and people to call on for direction, we found nothing in our area. Nothing. No one with experience navigating a terminal disease and the issues surrounding it.
Below is our story, which highlights the need for better support services for those with MBC.
The search for patient support
First, seeing the psychologist at the cancer centre is possible but that does mean more appointments and the corresponding trips to do that (on top of already spending more time there than any sane person can handle.) Secondly, support groups do exist but signing up isn’t an automatic in.
Since there are no MBC specific groups in our area, we set up an interview for my mom to join the MBC support group at her cancer center (200 KM away). The interview went well and she was actually kind of excited at the thought of joining. She waited a few weeks to hear if she had been accepted to the group, only to find out that since she couldn’t commit to attending every week, she wouldn’t be allowed to join. I know that there are likely good reasons for this, from a therapeutic or group dynamic standpoint, but I can’t help but feel slighted and sad on her behalf.
My sister ended up finding an online support group for patients who have advanced cancers, which she joined and found helpful, but after the eight-week commitment, the support group dissolved. Once again mom was left with no ongoing support.
We are currently patching together her support needs between online and occasional in-person support with the cancer centre counsellor.
The search for family support
First, we were told that we could utilize mom’s therapist at the cancer centre for a face to face family session (during daytime business hours) for an initial consult, and then discuss whether she would be willing and able to do Telehealth sessions subsequently. Promising except they may not be able to accommodate large groups. This would mean coordinating the schedules of eight working adults and consequent childcare for 6 children—all on the same day.
We were then referred to a psychosocial therapist at the Cancer Centre in a closer city (again not local and again the same problem with the scheduling and childcare). I suppose we could leave our husbands out of the session and only coordinate five work schedules but that didn’t seem fair as they are the ones who usually deal with the brunt of the stress levels, worry, exhaustion, etc.
Some of the cancer support agencies in Calgary offer daytime-only workshops for families so there is help available in the city and in regular business hours, but it’s a question of whether a family can or should have to take on struggling to make that work and again the extra driving for my mom and dad is an issue. We ended up being directed back to Community Mental Health Services in our small city, which is not an option unless you have a diagnosed moderate to severe mental illness.
We can and have utilized online supports individually through resources such as MyGrief.ca that have modules you can work through on your own. They are helpful and we will continue to refer to them as needed but we could have used some directionon how to communicate with your family about those very heavy, complicated issues. When you have five, six or eight personalities and coping mechanisms at the table, sometimes you need someone to direct and moderate the conversation to ensure it is actually getting you somewhere.
With all the research, phone calls, suggested resources and dead ends that resulted in patching together what we need as a family, here we are. Our wonderful local palliative care nurse has recommended some resources like Rick Bergh, who is a counsellor and author, and a local therapist who is helping to guide us through some family discussions around grief, loss, boundaries, communication and planning related to mom’s diagnosis. It wasn’t easy, convenient or without added stress to come up with this plan, but it’s the best we can do in a healthcare system that cannot accommodate the needs of advanced cancer patients and their families.
What I would like to see is a healthcare system that puts patients and families that are dealing with advanced cancer first. This is part of the reason why I joined Rethink’s Metastatic Breast Cancer Advisory Board where we are trying to advocate for the needs of metastatic breast cancer patients and their families at the grassroots and government levels. Obviously, medical research in cancer treatment is important, but my story highlights the dire need for accessible support services too. Patients and caregivers need all the support they can get so that they can live their lives and focus on spending quality time together while they have it.