When People Ask If I'm 'Better' Now That the Cancer Is 'Over'

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It’s not over. It will never be “over.” I know, it’s a depressing thought. But so many people have asked me, “You’re better now?” However, it’s not really a question… more of a statement. Like they are telling me I’m better now. Doctors are really good at this — trying to tell me I’m feeling better and everything is OK. Because that’s easier for other people. Because I had the cancerous organ removed, therefore everyone thinks it’s over. But the hard truth is, it’s far from over, and it won’t ever be over. Symptoms may improve, even to the point of remission, but it’s always there. Either as a memory, an unnamed pain, a worry in the back of the mind.

Putting cancer aside… (which is a strange statement, I know) having an autoimmune disorder is a long-term battle. It’s a daily struggle with flair-ups and remission. It can be debilitating at times, and other times it’s a distant thought and cannot even be detected.

Autoimmunity is a lot like cancer in that way. Remission, flair up, treatment, repeat. When that diagnosis comes and you understand the weight of it, it sinks in with all of its ups and downs and uncertainty. It changes life forever. Life will never be the same when something of that magnitude enters.

So what do you do when facing this diagnosis if it’s never over? You live… every day with courage, perseverance, and you try not to let the anger eat you alive. I have been angry, and I struggle almost daily with it. Not really with the question of “why me?” but with the realization that I feel truly alone. The loneliness has been deep and has made me rethink every single priority. However, I have come to be grateful for this realization. It has brought back into focus that the only true connection comes from within and connects to something bigger than ourselves. To the universe, to nature, to God.

So even though it will never be over, I believe the journey is meant to mean something. To point us where we need to go. To make us something more than we were before.

Or maybe it’s just a joke the universe is playing on us and it means nothing… either way.

*Disclaimer: The last sentence was my attempt to be funny and lighten the mood.

Follow this journey on The Best Cancer.

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The Mighty, in partnership with Fuck Cancer, is asking the following: Write a letter to yourself in regards to a cancer diagnosis. What would you say or wish someone had told you? Find out how to email us a story submission here.

Thinkstock photo by Ryan McVay

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The Impact of Cancer on Family and Friends

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You do not need to have cancer for the disease to have an impact on you. What should you expect when someone you know is diagnosed with cancer?

When someone is diagnosed with cancer, relatives and friends are often the forgotten ones. If that is you, then you will know that you are also affected by the disease and may require help to cope.

But you may also think you are not as deserving and important as the person with cancer. Well, the impact of cancer on all is very real, and to take care of yourself makes sense.

Often family and friends neglect their own well-being when, understandably so, a greater focus is on the care for the person with cancer.

You may even feel guilty doing something you enjoy or carrying on with some personal routines like going to work, hobbies and socializing.

If someone close to you has been diagnosed with cancer, this will affect you, too. Different people have different ways of dealing with it.

You, too, may undergo a life-changing experience and find yourself on your own unique cancer journey.

The impact on family and friends can vary and be long-lasting (in no particular order):

  • Economic: You can experience financial difficulties with extra medical care and associated expenses. If the person diagnosed with cancer has to stop working, this may lead to a reduction in household income and threaten mortgage or rent payments, school fees and more.
  • Work: Employers may be more or less accommodating when you require time off or more flexible working hours.
  • Social: Friends and relatives may be unhelpful and withdraw from you and a situation in which (for whatever reason) they cannot or do not want to be more actively involved.
  • Relational: You may find it difficult to make time for others or to be emotionally available. This can lead to friction and difficulties where others depend on you (e.g. children) or are less understanding of what you might be going through.
  • Spiritual: You may experience a crisis of belief and question why your relative or friend has cancer. Indeed, you may find it difficult to get a sufficient level of spiritual energy from within.
  • Physical: You may develop new or draw on existing coping mechanisms, which in the long-run may be unhelpful and lead to new problems: eating too much or too little, smoking, drinking, drugs, exercising too little or too much and such like.
  • Emotional: The psychological and mental impact of cancer on family and friends is not to be underestimated.

Common feelings are:

Helplessness  –“There is nothing I can do to make it better or control the situation.”

Why not me? — Feeling left out and isolated when the main focus of others and medical staff seems to be on the person with cancer.

Disbelief – “When will I wake up from this nightmare?”

Bereavement and lossGrieving for the other, for life and the relationship the way you knew it.

Anger – Why is this happening to us? Why now? Why doesn’t anyone do something? You may also find yourself at the receiving end of anger and irritability by the person with cancer or other family members.

Resentment – “We were not meant to live our lives like this.” You may also feel resentment towards the person with cancer – for getting it and for not “fighting harder” against it, and towards the disease interfering with the life you hoped you would all have.

Uncertainty and fear – Over cancer treatment, the future, your ability to cope.

Blame – Was it their lifestyle, you, others who contributed to it?

Being passive – You just want it all to go away.

Feeling depressed and lacking motivation – You feel overwhelmed with no clear way out.

Cancer counseling and therapeutic support for relatives and friends can assist in dealing with such difficult experiences and emotions.

Over time this can help lighten the load, rebuild emotional energies and help you explore choices available at this difficult time.

Cancer can changes lives forever – even if you are not the one with cancer.

We want to hear your story. Become a Mighty contributor here.

The Mighty, in partnership with Fuck Cancer, is asking the following: Write a letter to yourself in regards to a cancer diagnosis. What would you say or wish someone had told you? Find out how to email us a story submission here.

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How I Moved Past My Anger Over My Cancer Diagnosis

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When I was diagnosed with breast cancer, I felt everything else but angry. The anger came later — the weekend before my surgery — when I walked past a local cancer charity run.

Out of the blue, I suddenly exploded. The flood gates, the iron doors, reasoning and rationality, trust and self belief — none was strong enough to hold back the eruption of rage, anger, bitterness, hate and resentment.

The anger was bound to happen. The anger had to happen.

It had been six weeks since my cancer diagnosis. Two more days and I would finally be operated on, to be followed by chemotherapy and/or radiotherapy. It all depended on the lymph nodes, so I was told.

I used the time to prepare emotionally, mentally and physically for the most challenging and terrifying time in my life.

I knew about fear and terror. And I knew I needed to be prepared to keep sane, resilient and manage the physical and emotional onslaught.

I prepared well:

• I closed down and sorted all areas of my life that otherwise would cause stress and anxiety (work, financial security and relationships).

• I was (and still am) working with an herbalist to boost my immune system and strengthen my liver.

• I crafted some rituals that would engage my senses and keep me calm and grounded.

• The theme of nature and being in touch with my senses started to run through it all:

Hear: Audio books, soundscapes, Tibetan singing bowls.

See: Colors, landscape pictures in form of bedspreads, blankets, cushions, postcards on my ceiling.

Smell: Incense oils and candles.

Touch: Things that I could touch, feel and cuddle.

I was in an OK enough space and ready to get things started. Then I walked past the local park where a cancer charity run was under way. Lots of people (mostly women) in pink. Loudspeakers blasting out encouragement. Banter and laughter, happiness and pride, togetherness and strength in numbers.

A separate community for the initiated. Slogans and names on their backs: “for mom,” “for my wife,” “for my sister,” “for me,.”

Their sweat and then, finally, my tears.

I cried. Of course, I had. I was still in shock and disbelief, but I also had to hold it together and get through this.

But this sudden, forceful and powerful confrontation with others’ determination and happiness was too much.

Finally, I combusted, and my anger about having cancer finally broke through.

It was not pretty, it was not dignified, it was irrational and ugly. But it did feel good, honest and long overdue!

Of course, everything I felt about the runners was really about my own issues. Everyone has their own story, personality, history, wounds, trauma and fears.

But the combined positive and inspirational energy of this event was in total contrast to my inner reality of fear and anger. I really didn’t want to be part of that community and that story. I had never asked to be part of a cancer community. I even hate running. Even if I loved it, I might never get the chance again. And what’s more, I had no one to run for me. Self-pity does feel lonely.

Now, some years later, when I see people on a charity run, see names on their backs and see them being applauded and supported, I often feel a stab in the heart, a lump in the throat and tears in my eyes.

I am no longer angry. I am humbled and touched. Grief, resilience, determination and achievement can be side by side.

Anger, rage and despair are normal, but it’s a dark place to get stuck in. We need to move through it the best way we can.

A version of this post originally appeared on Between Self and Doubt.

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15 Unforgettable Acts of Kindness That Helped Cancer Patients Through Treatment

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Throughout the challenges of a cancer diagnosis and treatment, it’s the kindness of others that often brings hope and positivity to your day. Whether it’s as simple as a phone call or as big as a donation towards your treatment, friends and even strangers can never underestimate the power of kindness on someone facing cancer. Their actions will likely never be forgotten.

We partnered with Fuck Cancer to ask our communities what acts of kindness they have witnessed throughout their cancer experiences. The heartfelt stories they shared reveal that to a person going through cancer, knowing someone is thinking of them and wants to help make their day brighter can help them face their diagnosis. If you know someone with cancer, let these stories serve as inspiration as you support your loved ones.

Here’s what the community shared with us:

1.When I had cancer, around 12 years old, I was horrified of losing my hair. Most of my male classmates and my best friend (a female) shaved their heads for me and broadcast it on a screen that was in my ICU room since I couldn’t be around anyone. I’ll never forget that day.”

2.We had a group of friends who dropped off many meals and snacks throughout the eight rounds of chemo. They had coolers put on our back deck. They dropped ice and pre-made meals into the coolers and texted us before and after drop off. They didn’t want to bother us if we were not up to answering but wanted us to know they cared. They even had a list on the preferences of our family. It was pure love that went into that cooler. And felt deeply in our hearts. Thankful for that crew of 10 families who supported the cooler project for six months. Dedication.”

3.My sister was my caregiver while I was sick and always went the extra mile to try to make my mental state hopeful and take my mind off worrying/feeling overwhelmed. She would take me to markets, out for drives, and to the beach to put my feet in the sand. At times I didn’t feel like doing anything or even leaving the house, but she was always there to encourage me and remind me of all the beauty left in the world to experience. She would also try to help me with meals when I was on a restrictive diet for treatment and even followed the diet with me during one round. I still believe her love and presence was a major part of my mental and physical recovery.”

4.On the day I went in for my last round of chemotherapy, I looked and felt like absolute garbage. As I sat in lab medicine waiting to have my port accessed a kind woman came up to me and said, ‘In all of my years sitting in the Dana-Farber waiting room I have yet to see someone look as beautiful as you.’ She told me how my smile (the one I thought I lost a long time before this day) radiated from across the room. This woman reminded me that if I got through this last round of poison I could sit in the DFCI lobby for years to come and make other struggling cancer patients smile just as she did for me.”

5. “There was is a little girl, about 9, who has leukemia, and she used to visit me when I first started chemo. Every time she saw me she’d come running over as fast as she could and tell about all the Pokémon that she had caught. She knew I was in pain, and all she wanted was to take my mind off of it… it kills me that a kind and sweet little girl has to go through so much.”

6. “It’s happening right now. We had a burst pipe so a restoration company was brought in. USAA has been wonderful to us. They and the contractors have done many extra things to help us in the house. Old friends are becoming fresh again. I’m treated surely better than I deserve by most. We are humbly grateful to all who have helped or just been kind to us.”

7. “I was diagnosed stage 3 positive breast cancer at 31 (last year) with no children of my own and no time to postpone treatment for six weeks. My oldest friend offered me her eggs to be able to have my own children. Unfortunately due to my cancer type I still cannot carry my own children. There is no bigger gesture.”

8. “I went to check out my town’s brand-new cancer ward. The receptionist asked if I had an appointment, I told her no, I just wanted to see what it was like, as I was looking at a ‘giving tree’ with hats on it. I stopped at one with a breast cancer symbol and I guess she noticed because she asked if I knew someone with it. I told her yes, my aunt did and it runs in my family. She told me to take the hat to give to my aunt and that she’d pray my aunt beat it. My aunt had been looking for hats she liked and that one became her favorite.”

9. “Five years ago my grandfather [died from several types of cancers]. Prior to him losing his life, he had to travel five hours to get chemo, and it was taking a massive toll on my grandmother. The community banded together and made up a driving roster and meals roster so my grandmother didn’t have to worry about the driving or food, it was all taken care of.”

10. “My children and my grandson were there with me each time I had my chemo. In fact, my grandson made me so proud when he went to the cafeteria to get a burger. He was young but when he returned with his burger, one of the other patients getting treatment asked him what he had. He offered to get a burger for the other patient and asked his mother to hold his, not once thinking it would get cold. He went all the way down to cafeteria to purchase a burger for that person. When he returned his own burger was cold but he never complained. At that moment I was so proud that I never felt the pain I was going through. I will never forget that for as long as I live.”

11. “I have tried every treatment option for this cancer and there were no clinical trials in the Midwest. So down to Texas I went to get a second opinion and they had a spot in an immunotherapy trial! But travel and medical expenses were an issue. So out of the blue my childhood friends set up a GoFundMe page that raised $10,000 and ex-coworkers set up this huge benefit for me and my family! All the love and support from friends, family and our community was amazing. I am so blessed to have these wonderful people in my life!”

12. “Friends from church minded my boy while I had chemo, fed my family for three months and cleaned my house. These women from my church were amazing. They made sure my little girl who was 3 did not feel left out, ringing her little gifts when they arrived. No words can express how much they did for us as a family. Their support allowed us to rest and be together rather than shopping and cleaning… In the middle of all this the bank rang. They had noticed we kept going into overdraft and wanted to introduce a new local manager. I explained what we were going through and they suggested an overdraft, $3,000, at no cost to us, for three months. This allowed us to pay the multitude of bills that were coming in and financially survive.”

13. “We just found out my mom was sick and I was supposed to go to a LuLaRoe (leggings) party. Since I had to cancel, the consultant sent leggings to us for free with a cute card. At the bottom she put this. Cancer sucks but we have so much love and support, it will never ruin our spirit!”

piece of green paper with words PS fuck cancer

14. “My daughter who will be 2 in February has leukemia, and she has been greeted with smiles and hugs each time we enter clinic appointments. Her nurses and doctors all have a special place for her in their hearts, and it shows in everything they do. Her social worker gave us a $500 gift card to help us out with medical bills. That woman is a blessing.”

15. “I’m a stage 4 non-Hodgkin Lymphoma survivor who has been healthy for two years. I had a lot of unexpected kindness from the relative who sent me a card every week when I was sick (at first I thought she was getting older and didn’t realize she had already sent me a card, but she was just genuinely lovely), to a friend across the U.S. who sent me random packages of small things to make me smile, to my hairdresser who didn’t charge me when I cut off my hair to donate when I started chemo and did a free makeover when I got better, to my best friends who gave up our annual girls weekend away and turned it into dinner two towns over from me just so we could be together.

You know who your friends are, but you don’t know the level of compassion people have until you go through a major illness.”

Have you experienced an act of kindness in your cancer journey? Share your story in the comments below.

The Mighty, in partnership with Fuck Cancer, is asking the following: Write a letter to yourself in regards to a cancer diagnosis. What would you say or wish someone had told you? Find out how to email us a story submission here.




15 Unforgettable Acts of Kindness That Helped Cancer Patients Through Treatment

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How to Fully Embrace the Transformative Process of Illness

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Most of us are familiar with the butterfly as a symbol of transformation. The tricky part is, it is the symbol of manifested transformation, rather than the path that brings us there. And while it’s nice to have the final goal in mind, it can be overwhelming to try and figure out how to transform ourselves, especially when our desires for transformation are often large in nature and involve changing beliefs, habits and so forth that are holding us back from full transformation.

In my mind, if you seek transformation, you might chose the caterpillar as your muse. Caterpillars are born knowing the one thing they need is nourishment to grow. Bit by bit they take small bites that grow their bodies and energy stores, trusting they will know what to do and what they need. The energy is slow, deliberate and purposeful. They are in tune with their process, they know when it is time to rest and time to do. When the urge comes to construct the chrysalis in which they will cocoon themselves for the final stage of transformation, they find a safe and protected place to settle. They stay inside their cocoon until they know they are ready to emerge. Even once the transformation is complete, they take the time they need to open up again, prior to lift off.

Many of us who are diagnosed with a life-threatening condition hope the experience will help us transform in some way. It is the silver lining of facing death. Yet, the experiences we have gone through to heal ourselves are often traumatic, and it takes time to process what our body, mind, spirit and self have been through.

Recently I was working with a cancer survivor who is about to end treatment, and with her permission I will share some of what we discovered. In the session, she was identifying how some old patterns of thinking and feeling have begun to re-emerge as treatment comes to an end. Patterns she had gotten a reprieve from while she was going through treatment. Her artwork reflected an empty circle in the middle (representative of identity confusion she has experienced throughout her life), with a chaotic dance around her of the parts of herself she values but feels unsure of how they can cohabitate. The added layer of this dilemma is wondering which of these parts were authentic expressions of who she is and which parts she developed to please others.

As we were exploring how this was impacting her through art, her own wisdom spoke to her to give her guidance about her needs. There was a visible relief, because she truly wants to benefit from the transformative power of facing cancer and was dismayed to feel old patters re-emerge.

Nietzsche once said, “When we are tired, we are attacked by ideas we conquered long ago.” As a psychotherapist, I have seen this be one of the driving forces that brings people into counseling. For nothing is more disheartening than to find ourselves slipping into mindsets or behaviors we thought we had mastered. Major life events can often trigger a resurgence of these old patterns, in part because when we are being challenged to confront a major life event, we are being simultaneously pushed to examine our unfinished business.

So find your inner caterpillar. Trust any sparks of inspiration that help you connect to that concept. Be gentle and patient with yourself, for you are in a tender and vulnerable point in your life. There is no need to rush. Finding small “bites” to tap into your experience and feeling them will allow you to grow and ultimately transform.

At the end of the session I described above, I asked my client if she wanted to draw an angel card at random to see if it would offer a bit of insight or inspiration for moving forward. She did, and we both got goosebumps when she discovered the word she drew was birth, or in this case, rebirth. I am with you in solidarity, whether it is through this blog or in person. I hope you can feel it.

We want to hear your story. Become a Mighty contributor here.

The Mighty, in partnership with Fuck Cancer, is asking the following: Write a letter to yourself in regards to a cancer diagnosis. What would you say or wish someone had told you? Find out how to email us a story submission here.

Image via Thinkstock.

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I'm Giving My Family Permission to Celebrate the Holidays Despite My Illness

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When I became very ill for the first time, many people around me started walking on eggshells – especially around the festive season.

silver reindeer decoration Though I personally do not mark Christmas very much, in the places where I live (UK) and where I was born and raised (Germany), Christmas and the New Year are widely celebrated. But during that festive season especially, my close family does not know what to do for me.

When I was diagnosed with breast cancer it was May. By December, the chemotherapy (not the cancer) had left me too ill to make a short flight to join family for Christmas in Germany, which is our tradition. I was too weak and frail to do very much at all. My parents were too old to come and visit me.

I did not mind. I was too unwell and tired to make a drama out of it. But for others, the situation had turned into an issue of personal conflict, loyalty and social etiquette.

When no one talked about it initially, I knew something was up.

Eventually, after some probing and encouragement, my parents and others opened up.

Was it OK to celebrate Christmas? Was it OK to visit others? Was it OK to put up the old Christmas tree in its usual place? They were worried what it might be like for me if they did.

My parents were…

  • worried I might think they did not care.
  • worried I might think their lives had not been affected.
  • struggling with how to cope and live with the knowledge that their child might die before them.
  • grieving that all their hopes and dreams about their life in old age had been shattered.

They needed my permission and blessing and support. I knew that and my heart went out to them.

And then there is the issue of social etiquette – conforming to social expectations. Depending on where you live, this can be felt strongly, or not. And I think that also played a part in the uncertainty and need for my blessing. “Karin said it would be OK….” I do not blame or feel offended. I understand.

Clearly, December, Christmas, New Year’s and life (both theirs and mine) would never be the same again.

The diagnosis, illness and treatment had been like a massive earthquake, destroying everything. How was I going to rebuild? Was there time to rebuild? My life has been shortened. While the diagnosis was not terminal, predictions vary. So much uncertainty.

With all that going on, and radiotherapy just starting, I felt overwhelmed by others struggling to do “the right thing” by me, by themselves and by others. I understood it, but I was also saddened and angered by it.

I did not want Christmas to be yet another thing that was affected and destroyed by my change in fortune.

Everything had been thrown into question, and to have some continuity of tradition was strangely reassuring. Even though I do not decorate my own home much at all, it did matter that my parents’ home would be as it has always been.

I did not want to have to emotionally rescue others when I was struggling to rescue myself. My energy was and remains limited.

I was angry to be put into this situation, because it felt like others were weak when really I needed them to be strong and take charge. This might be unkind, but that is what I felt then.

So, I did give permission and honest encouragement to “celebrate” as much or as little as they saw fit. It mattered to me that, unlike concentric circles, my illness did not push away everything.

For now, life continues with me. At some point, life will continue without me. I do not want or need drama.

I want and need normality that works for me, even and perhaps especially during the festive season.

This post originally appeared on Karin’s blog: Between Self and Doubt.

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