Revisiting Grief

I ran into a friend of a friend a little over a week ago that I haven’t seen in a long time at a local restaurant. One of the things Laurel and I have in common is that we have both lost people we’ve loved due to cancer (my mother and her husband). She was with a group of about six or seven others. There was nothing remarkable about anyone’s appearance. Everyone looked normal. I stopped by her table for a quick hello as I left the restaurant and learned she was eating with her grief group from hospice. Her husband died around three years ago and although they do not meet formally as a group anymore, she explained they still get together every so often to check in on how everyone is doing.

“So, how are you doing?” I asked her.

“I’m vertical,” she told me.

She looked great. I know. Even though I heard it in my head, it was my first reaction. Looking great has nothing to do with how a person is feeling. I even used the word “normal” above to describe her.

It’s cringe-worthy.

I was thankful I hadn’t said it out loud. I know so well that someone can look like they have it all together on the outside when the inside is a hot mess. This is true whether the inside is slammed with treatment side effects, pain from sickness, anxiety, depression, or grief. The inside often is in some state of constant churning. It may be such a present feeling that it is normal for you. Normal always fluctuates for me and has an overpowering element of uncertainty of the future. Normal has to be rooted in the NOW. I’m good at holding it together on the outside. Most of the time.

Grief is messy.

Being vertical shouldn’t be so hard. But it can be.

There is something comforting about being with others who have similar experiences. Support groups are great for this if it fits your comfort level. I went to one after my mom died. It was more of a workshop setting. It gave me a better understanding of my feelings and explained a few things that I wouldn’t otherwise have attributed to grief. Individual counseling is another option to support someone through grief.

Running into Laurel made me pause to revisit what I’ve learned about grief over the years. I reminded myself of many points worth remembering.

Grief Reminders

  • Grief is physically and emotionally exhausting. A grieving person needs more restorative sleep.
  • Grief is hard. It’s tougher to make decisions and trust others, including trusting your own abilities while grieving.
  • Many question truths in their personal belief systems such as religious beliefs, the meaning of life, and ideas of fairness.
  • There is a sense of having no control over anything.
  • Grief is distracting. Functioning in day-to-day activities or at work can be affected. There is a tendency to forget things.
  • Some people may bump into things, drop stuff, or be prone to accidents. They do not attribute these events to grief and wonder what in the world is wrong with them.
  • Some people find it easier to be at work and like having a focus away from grief, while others find it difficult to be in their work environment. Some who find an escape from grief at work find that it overwhelms them again as soon as they get home where the memories live.
  • Dates such as birthdays, anniversaries, holidays, and other important events will be bittersweet. The anniversary of a death will be dreaded and the day after will feel better again because there is a whole year before it happens again.
  • Grief is real and ongoing. A person doesn’t just get over it. The goal isn’t to get over a loss but to find a way to get through it.
  • People grieve losses other than death. Loss of jobs, a move, divorce, a friendship or relationship, failed plans, and changes in health are all sources of grief.
  • It doesn’t mean someone is over their grief if they are having a good day. They may just be getting through the day vertically.
  • Grief spurts come out of nowhere. They may not last long but can be intense.
  • There is no timeline. There are as many ways to grieve as there are people. What works for one person may not work for another.
  • Grief can teach us about life.

I find a lot of strength in affirmations. I’ve read and collected many, blended them together, and written my own when I have a specific need. I have close to one hundred in my affirmation file and I’m always coming up with more. Here is my group of affirmations on grief. Perhaps one or two will jump out as applicable to a situation in your life.

Affirmations That Acknowledge Grief

I allow myself to fully feel my feelings, both happy and sad.

I can still feel love in the world without my loved one.

I seek the help I need and accept help when it’s offered.

I hold on to love and will let go of the grief when I’m ready.

I am surrounded by seen and unseen love and support.

I am kind to myself while I grieve and heal.

I honor my lost loved one by living my own life in positive and beautiful ways.

I move away from memories that bring me pain and focus on memories that bring me happiness and peace.

Grieving is a part of life and I am doing okay.

There are many feelings involved with grief and loss and it’s okay to feel all of them.

I still feel my lost loved one’s presence and it comforts me.

I grieve loss in healthy ways that are right for me.

There is no timeline for when grieving is done.

Grieving ebbs and flows differently for everyone.

I recognize difficult moments and know they will pass.

I choose to grieve my loss and move forward at my own pace.

It is okay to feel happy again.

Moving on with my life does not mean I have forgotten someone I loved.

I am grateful for the time I shared with my loved one.

This experience has allowed me to discover new truths about myself.

I am done being sad for today and I move on to other emotions.

My life has changed and I will meet these changes day by day.

There are many people I can talk to who will listen to how I’m feeling.

I feel supported during this difficult time.

I am learning how life works for me with these new circumstances.

After I’ve given all this unsolicited advice, I think it’s also important to avoid offering easy answers or clichéd expressions to someone who is grieving. As an example, I often hear people say God needed another angel when someone has died. It’s meant to be comforting. I don’t believe this. Heaven has enough angels. Keeping people around longer on Earth that spread goodness seems like a better idea to me. We need those people to stick around. Someone who is grieving needs to feel listened to and feel comfortable enough to cry and express their feelings with the support of their friends. Telling someone how they should be feeling or dismissing their feelings with some tired or cute remark invalidates grief.

I have grieved my parents and other family members, friends, neighbors, and people I have never personally met who have died from cancer. I don’t think I’ll ever be done grieving some deaths, and that’s okay. It’s there. I can still be happy. I’ve grieved a child and an unfulfilled dream when cancer put a screeching halt on plans to become an adoptive parent. I’ve grieved relationships that have changed. I’ve grieved my teaching career when it became clear it was in my best interest to retire. I’ve grieved my past because I can’t reclaim my life and health to what it was before cancer. I’ve grieved my present because of disappointment and anger and changes that still don’t fit my plans. I continue to grieve my future because of fears. Although it isn’t what this post is about, I also have hope for my future and I will not let go of my hope.

There are many parts of myself that I grieve. I choose to keep many of those thoughts private for now. It’s my work to do, difficult to share, and very hard for me to put into words.

Grief is universal but everyone does it differently. There is no one right way to do it, but it needs to happen in its own time and in its own way. I don’t want to forget my loved ones who have died. I do want to quiet memories that haunt me. I do want to remember all the happy times I’ve shared with people who’ve died.

Laurel is incorporating grief into her life as she keeps living and moving forward. Looking fine on the outside doesn’t tell the whole story. It seldom does. I hope I can meet people with compassion and empathy to offer whatever support is needed.

Three affirmations from my list jump out at me as I write today:

I honor my lost loved one by living my own life in positive and beautiful ways.

Moving on with my life does not mean I have forgotten someone I loved.

My life has changed and I will meet these changes day by day.

 

What are your thoughts on grief?

When Your Oncologist Leaves

Two weeks ago my oncologist told me some devastating news – he was leaving. It’s honestly one of the hardest things I’ve heard at an office visit over the years, and trust me, there have been some tough conversations.

He is leaving the UW health system.

He is moving to Florida.

He said he had to go.

What does that even mean?

I know I have been unhappy with some of the management decisions that have trickled down and affected my care. There have been changes I don’t think serve patients’ best interests. There have been facility needs that have gone unmet or approached with band-aids rather than true solutions. There very well could be demands put upon him that I know nothing about and he feels he can’t work in an environment that doesn’t match his philosophy anymore. I don’t know anything for sure other than he is leaving.

He is a GOOD DOCTOR. The best.

I understand he has to do what he needs to do. I can’t be mad at him for doing what is best for him. However, if he’s leaving because of some bureaucratic crap coming down from people who have lost their connection to treating, caring, and curing people with cancer, then I am outraged. My gut tells me to be outraged.

Whatever the reason, I am losing my oncologist.

I feel such sadness and an immense sense of loss. I have that feeling of a small child who suddenly discovers she has lost sight of her parent in a grocery store and stands frozen and scared as she begins to cry. I feel broken like a mirror that has shattered into many shards of sharp glass. The image looking back at me is now jagged and distorted. I feel like a kicker who missed placing the final kick through the uprights by inches in a championship game. Everything feels wrong. I am all out of sorts.

My oncologist has been a constant in my life for more than seven years. I’ve seen him every three weeks for the last three years. I’ve known him for about fifteen years because he was also my mother’s oncologist. I have held him to a very high standard. I’ve depended on him to be there for me. This is someone whom I’ve trusted, respected, and knew was one hundred percent on my side. He is a good blend of medical expertise and hope that every oncology patient needs. He understands I have many questions, I worry, and I’ve always wanted (and will continue to want) aggressively appropriate treatment options. I will choose option A with challenging side effects over option B with lesser effects if A can potentially do better work than B. Every. Single. Time.

He’s gone to bat for me on more than one occasion.

He knew how badly I wanted to keep teaching and helped me keep doing what I loved doing for years. He also told me when he thought it was becoming too tough and unrealistic.

He suggested supplements that have helped me feel healthy and strong.

He encouraged more testing that opened doors to current protocols. Protocols that have been good for me.

My oncologist understood me. He viewed me as a person and not just as a patient. I have grown very attached to him. I will miss him.

Where do I go from here?

I am fortunate for a few reasons. The UW Carbone Cancer Center where I receive care is one of the top cancer centers in the country and the only comprehensive cancer center in Wisconsin. I know I will continue to receive quality care. I am also lucky that if my oncologist is leaving, he is leaving at a time when I am doing really well. I can only imagine how much harder this would be for me to handle if I were struggling physically. Lastly, my oncologist has taught me well. I’ve learned a lot from him about my health. He has really shaped my thinking since we embarked on our doctor-patient relationship. I daresay I may have rubbed off on him, too. At least I hope I have.

I am not always an easy-going patient. I’ve edited consent forms before signing them. Someone there once compared metastatic breast cancer to a cow that had been let out of a barn. It’s Wisconsin. I added on to that analogy and told him, “Just because the cow’s been let out of the barn, it doesn’t mean it can crap all over the pasture.” I’ve questioned, I’ve pushed back, I’ve disagreed, and I’ve complained. Mind you, I’ve also agreed, supported, amazed, and sparkled because that’s the kind of gem I am. And I am a gem. I like to think my spirit has never been diminished there because of my health status.

Oncologists come and go. I understand this is true, perhaps I have been fortunate that it took this long to happen to me. People move on in the professional world all the time. Yet an oncologist is very different. In my eyes, an accountant, dentist, plumber, chef, lawyer, teacher, or other professionals all have very different relationships with the people they serve. The relationship with a doctor is different, more intense, and more personal. I feel lost, abandoned, and alone. This person just isn’t going to be around and that makes it similar to a death in some aspects. A good friend of mine has had two oncologists leave her, and a third tell her she couldn’t see her again because she has passed enough benchmarks in time and is there is no evidence of disease.

The process has started to find a new oncologist so I have one in place when he leaves in a couple months. If you know me, you won’t be surprised that I’ve compiled a list of requirements my next oncologist must have.

My oncologist needs to be:

  • Accessible
  • Hopeful
  • Positive
  • Empathetic
  • Personable yet professional
  • Up to date on current research and new treatments
  • A lot like my current oncologist 🙂

My oncologist must:

  • Have a breast cancer specialty
  • Keep a very close eye on me
  • Advocate for me
  • Remember I am a person and not just a patient
  • Accept and even enjoy my personality (I’m anxious, I’m smart, I research a lot on my own, I advocate for myself, I can be intense and insistent, I’m thorough, I’m hopeful, I’m fun, I cry, I’m sensitive, and I’m tough).

Sure, I have high standards and I am not going to settle for someone who doesn’t meet them. A good fit is essential for my best care.

I am confident I will find the right fit.

Unfortunately, I feel the time has come for me to move away from the smaller clinic setting I love so dearly and transfer to the center at the giant hospital. I need to put more weight behind a preferred oncologist than my preferred location. Truthfully, I’ve heard whispers that the smaller clinic may not stay open. I wouldn’t be surprised if it closed. It would be consistent with the kind of nonsense decisions that have been made regarding that smaller setting. Then, once again, I’d have to make a move with either a new doctor, a new location, or both. More importantly, I don’t know if I can continue to go to my current clinic once my oncologist leaves. Maybe I need a fresh start. It could be the best choice I can make.

It would be tough for me to leave and make this change. I’ve also grown very attached to my nurses, NP, and even the schedulers and people at reception. Everyone is so friendly and it’s one of the reasons I prefer the smaller setting. I get attached far too easily. Still, I must put myself first and make the decision that serves me the best.

I will be fine. I have time to accept this change, make a plan, and transition positively whatever I decide. As for my oncologist, I will thank him, say goodbye, and be forever grateful that I have been in his care for so many years. He’ll always be my oncologist. I’ll just have two now.

Consider responding:

  • What helps you when you need to make a difficult transition?
  • What qualities or characteristics do you look for in your doctor?