Beyond the Body: Mental Health & Bladder Cancer

Physical health is celebrated. Every corner has a gym. Every celebrity is pushing someone’s weight-loss products. Our phones are set to count steps and make suggestions on how to get more. I have been on diets since I was in the fifth grade. You name it and I have been on it, by choice or by coercion. I have counted calories, carbs, steps, and grams. I have had some success and some failure. The one constant is that as long as I was trying, my efforts were celebrated. Losing weight is the holy grail of life, or so we have been told. I have bought all sorts of fitness equipment, joined gyms and tried programs. I have had some success and some failures. Mostly, I have maintained a relative level of health and functionality, physically. Cancer is not just physical Talking about dieting and exercising is acceptable. People have all manner of conversations. They share their ups and downs. The same is true with cancer. We can talk about the physical disease. We can talk about treatments and trials and medications. We can compare symptoms, and we can compare outcomes. Everything will be fine as long as we stay in the lines. But here is a truth outside of those lines: cancer is just as mental as it is physical! The stigma around men reaching out for support This may be the dirty little secret that nobody wants to acknowledge or admit. Add to that the stigma society attaches to needing therapy and stack in the toxic idea of masculinity we have cultivated, and things get daunting. Men don’t need help. We can lift any load. We can endure any pain. We do not ask for or need any assistance. John Wayne never had to ask for help. My first attempt at seeking therapy I have seen four therapists. The first one was pre-cancer and was more trying to sort out some childhood baggage. Walking into the first appointment nearly gutted me. I have never felt like more of a failure than that session. Three visits and my insurance maxed out and so did my ability to open up. The baggage remained and now had an additional failure. The next attempt was a couple of years ago. I went for several months and learned a lot about myself and my anxiety. Some of the issues were cancer-related; some were just life-related. Our time together ended when I felt we were not moving forward. The third and the fourth try were a trainwreck from the onset. We had no connection, and that was painfully obvious at the end of visit two. I am looking into starting over soon. The greatest lesson I have learned is that I can ask for help. Taking care of our mental health I learned that I am responsible for taking care of my physical health AND my mental health. If I broke my arm, treating the fracture would be obvious. Failing to treat the break would be unthinkable. The same is true for mental health, and we need to be open to our need for it. If I said I was not going to treat the physical side of my cancer, I would be thought foolish. I am saying that not treating the mental aspect of my health is equally foolish. It's uncomfortable to admit we need help It takes far more strength to say we need help than it does to suffer silently. It is uncomfortable and humbling to admit that we need support. That said, I will stand with anyone who needs someone to say, "It is okay to ask for help. It is okay to need therapy and support.” If you need support or help, then you have a responsibility to yourself to get it. If I told you to forgo your chemo or other treatments, you would tell me to pound sand. Be that adamant about your mental health. If you decide to seek help, be willing to be open and honest with your therapist. They cannot work hard for you if you aren’t willing to work hard for yourself. Be open. Laugh. Cry. Scream. Do whatever you need to do to be well. Some of the hardest conversations I have ever had have been with a therapist. Some of the most enlightening and healing conversations have been with the same therapist. Advocating for yourself I choose to go beyond my comfort zone with physical and mental health professionals because I have made a commitment to take care of all of me. Be willing to advocate for yourself. Be willing to make your own decisions. Be willing to accept whatever help you need to be your healthiest self. [lead_gen showIfLoggedIn="0" campaign="shortcode_posts" source="site"] For those of you who don't know me or my journey, my name is Anita, and at the grand old age of 45, I was diagnosed with terminal small cell bladder cancer. Now, this is a rarer type of bladder cancer, and by the time I was diagnosed, it had already spread to my lymph nodes, liver, and bones. My prognosis was grim My prognosis was grim. I was told that I may or may not survive to Christmas 2016 and yet, here I am, working on my laptop on a beautiful sunny afternoon in August 2019. Never in a million years did I ever think this would happen, especially as those first 3-4 months were about preparing myself, my family, and my friends for my death. It was such an emotional and devastating time for us all. I feel fortunate I know that I am one of the "lucky" ones, fortunate to still be alive. To still be waking up every day, lying next to my husband and our dog, Sherlock. I know that I am amazed at the life events that have happened this year to my family. For one, I am a Nana! Yes, me, a Nana! As I write those words, I am still having to pinch myself. Two years since I had my bladder removed I recently "celebrated" my two year stoma anniversary. Well, when I say celebrated it, I mean I acknowledge it. I remembered the day, I looked at the photos of me in ICU (intensive care unit), and I became so overwhelmed. You see, that operation has given me so much more time. They took out a lymph node that was filled with cancer cells; I know for sure that had I not had that operation then my story would have been completely changed. Bladder cancer and mental health I'm forever speaking about bladder cancer and mental health. This is such an important issue for me as over the past three years, I have gone through every possible emotion there is ranging from anxiety and heartache to elation and relief and becoming completely unsure of my place in the world. I isolated myself I isolated myself from everything. I stayed at home, I couldn't be bothered with social media, everything became so terribly difficult to do. I avoided phone calls from doctors. I canceled appointments, and I left my emails unanswered. Why? Because I had had enough! I couldn't cope with all the appointments and specialists Enough of the endless hospital appointments, enough of the blood tests. Enough of the ongoing treatments for all the other illnesses this cancer has brought with it. I see a cardiologist, a rheumatologist, an oncologist, a urologist, a gastroenterologist, and a respiratory consultant. It's endless! I began to only speak to people outside my small circle if I really HAD to. It was all draining, all-consuming, and I just couldn't cope with it anymore. Three and a half years I had ridden this rollercoaster and taken it in my stride. Yes, there have been some sad moments, happy moments, and moments in between all of that. I was worn out I desperately wanted to help and support others, but I just didn't have the energy. I was worn out with everything - I was worn out with life. I wanted to just be normal, just be "me." I wanted to be the Anita who bakes and looks after her family. The Anita who doesn't have cancer or illnesses that prevent her from doing things. The Anita who felt well! I was referred to see a psychologist (oh, add her to the list), and it's been four appointments now, and I think the fog is beginning to clear. How my psychologist has helped me She has helped me to see that I am the same person I was, just now I have added layers. She has helped me try and make some sense of living in "limbo land" (not dead yet but not cured and never will be). She has helped me to see that life changes, every life changes, even without cancer. We evolve and grow as a person, and that's what cancer has brought to my life. Finding peace We speak about living with an "expiration date," a death day. The day we all know will happen, it just is that mine will be a lot sooner than I would have wanted. We speak about how that affects things that I may or may not do and how to come to terms, and I finally think I may have found my peace. Planning for the future in my own way She has helped me to deal with issues that I thought I had. We all say about living in the here and now but honestly - how many of us ACTUALLY do that? How many of us don't think about our futures? It's human nature. We dream, we plan and to some extent, I can still plan for the future. Okay, so there probably isn't much of a point of my going to university but if I wanted to, why shouldn't I? Why should I let my diagnosis change and destroy my hopes and my dreams? There is always hope. I hope that I will prove everyone wrong and will be a survivor, a thriver. Someone who I am proud to be. Lessons I have learned Bladder cancer has taught me so many things. I am a writer (hahaha - I still pinch myself). I am a supporter of others for them to lean on. I have experiences to share; even though all of our journeys are so very different, we still all feel the same emotions at points in our journey. I have grown as a person It has made me realize that my journey, now, is just as poignant and important, maybe more so, than the one from before I was diagnosed. I have had so many opportunities to help change legislation, to speak about living with advanced cancer and the psychological effects. I have been invited to focus groups. In short, I have GROWN as a person, so instead of mourning the "old" me, I am going to give her a gentle hug and tell her that it's ok, she can come out now and we can work together in this fight against cancer. [lead_gen showIfLoggedIn="0" campaign="shortcode_posts" source="site"] ,,Many of the cancer fighters I have spoken with struggle with keeping up appearances. Our concern is how the illness will affect our loved ones. Just having cancer seems to invoke shame and a fear of being a burden. We don't want to admit any weakness We have been caregivers and providers. Now we are the ones in need of understanding and care and that is a huge adjustment. Another aspect of this is the idea that admitting any weakness makes cancer real. If we can appear to be fine, then the cancer never lands. Self-sufficiency can become imprisoning. I ran myself ragged For me, this was one of the greatest battles. Truth told, it still is. I had my tumor removal one day and took one day off, then it was back to work with no break. I scheduled my appointments and my scopes so I did not miss anything. I made work every day. I made all of the kids' events. I ran myself ragged. No one told me I needed to. No one pushed me or made any demands, I did this to myself. We refuse to admit we need help The problem I created was an unwillingness to admit I was not okay. I would be asked how I was and knee jerk my response, “Okay.” “How are you doing?” “Okay.” “Is there anything we can do for you?” “No thanks, I am okay.” You see the pattern. I was so fixated on being what I had always been that I could not accept help as I adjusted to my changing needs. I now realize that I was not alone and many of us rob ourselves of receiving what we need by refusing to admit we need it. Letting our loved ones care for us We also rob our loved ones of the opportunity to give the care to us that we have given them. By shutting down and being perpetually “okay” we stop ourselves and our loved ones from working through this and processing it. We create a blockage to healing, ours and theirs. Most people would be willing to help if we were honest Think how silly it would be for someone with a broken arm to act as if they were able to do everything they did with two good arms. If we see someone with a visible challenge we are happy to make allowances. I think most people would be just as willing to help if we could get to an honest, open place to say, “I am not okay right now.” Speaking the truth Just for now, “I am not okay.” I am tired. I am struggling with anxiety and some depression. I hurt and need to sit down or lay down for a bit. I just need to slow down. I need someone else to cook or clean or set up, and I am going to supervise, or I am going to play badminton. What I am learning is that it is okay to not be okay. I am learning that just speaking the truth about not being fine is powerful. I can be not okay and still be strong and capable and all of the things I need to be. Most of all, I can be not okay and be fully human and alive. Accept the help and support you deserve I am thirteen years out and to this day, I have times when I cannot ask for what I need. I will be fine one minute and undone the next. I am learning day-to-day to say, “I am not okay right now.” Speak your truth. Be willing to be honest about your struggles. Give yourself permission to accept help and support and the love of those who are waiting to support and nurture you. Be okay with not being okay. [lead_gen showIfLoggedIn="0" campaign="shortcode_posts" source="site"] A bladder cancer diagnosis, for yourself or someone you love, is overwhelming. Even so-called good news (on the cancer spectrum) of an early stage diagnosis does not feel good. It’s hard not to be angry. Sometimes anger is most intense at the outset, sometimes it compounds over time, or perhaps it’s a chronic, low-grade ever-present feeling. Anger is normal This is normal. I think there is often too much pressure on patients and families to be positive. That’s not to say it is not immensely valuable to be positive – it can certainly help us feel better moment to moment. But positivity that entirely squelches the normal sense of anger can, I think, backfire in the long run. A bladder cancer diagnosis is an onslaught of new words, choices, data, coming at us rapid fire. While trying to process this practical information, we are often stunned at the reality that cancer has infiltrated our lives. I experienced a churning background loop of questions in those early days: Why my husband? What caused this – his habits are healthy? Who can understand what this feels like? How do I keep functioning and get help but not pity? How do I stay hopeful and helpful for him? Pause If you find yourself (or a family member) in the early days of a bladder cancer diagnosis, pause for a moment to reflect upon just how much information has come at you. And how many questions have cycled again and again through your mind. And how overwhelming all of it can feel. Try to pinpoint whether and how often you feel angry about the diagnosis. And then give yourself credit. You are here. You are in the moment. You are doing the best you can to make sense of it. You may not like it. You may be furious. But you are finding your way through as best you can. There is so much in life we cannot control, and cancer is a very big one. Allow yourself to express anger Allow yourself and the patient (if you are the caregiver) to express anger in an appropriate context. This could mean attending a support group, meeting with a therapist or writing a letter to cancer that no one will ever see. It can be as private as is right for the individual. But being allowed to express the anger is an important key to functioning well day to day. We do what we can Beyond that, we do what we can. From a practical perspective, this may mean gaining a basic understanding of the diagnosis, the medical team’s role, the treatment options, and the likely side effects. From a self-care and patient care perspective, this may mean pinpointing what rituals and activity will help both patient and caregiver stay sane. Knowledge and action can often feel like good substitutes for control. Rituals and activities to stay sane Here are some ideas: Cancer-Free Days on a regular basis (no medical appointments, no talk of cancer, doing something fun) Identifying mundane work that can be outsourced to friends, family or hired help Exploring soothing activities specifically for patients and caregivers at a cancer center or nonprofit such as art therapy, yoga, meditation, writing, or whatever might appeal to you Planning, to the extent, a short trip or outing that everyone can look forward to – it might be a day trip, a movie, a special meal – anything that will be a treat [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"]

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Every. Single. Day.

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