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What Being Diagnosed With Cancer Was Like for Me

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This is for or those of you who are wondering what it’s like to be diagnosed with cancer — such as whether your reaction was “normal,” or what might happen if your worst fears come true after your biopsy.

Of course, I am only sharing my point of view here. I am in no way saying this is how everyone feels when they are diagnosed with cancer. The main thing I want to stress is please do not fret if your reaction is “normal” or not. Nothing about being diagnosed with cancer is “normal.”

Being Told I Don’t Have Cancer

After my biopsy I was told, “Don’t worry, it’s definitely not cancer!” Of course, at 21 (back in 2006), I hadn’t for one second thought it would be. My doctors originally thought it was eczema, so I thought it would be some sort of skin condition or ear problem. I’d never even heard of getting cancer in the ear, so I was shocked they’d even mentioned it.

I’m not quite sure what I thought was wrong with me, to be honest. When I look back now, I try to think about what was going through my head. I just wanted the pain to end. I didn’t really think about what could be causing it, just what might end it. Maybe it was an age thing. At 21, do you really think about what could be wrong?

My mum was recovering from breast cancer and was due to have her reconstructive surgery in the autumn (this was all happening in the spring/summer for me). I remember saying I was surprised they had even mentioned cancer. She had said she wasn’t and was wondering if it might be. I was just frustrated she was being negative. Of course, now I know that once you’ve been diagnosed with cancer, your outlook on illnesses can change. And something unexplainable can at times mean cancer.

So, I pushed it to the back of my mind, because they’d said it definitely wasn’t cancer. So I was OK, right?

It’s Cancer

I remember the day I was told it was cancer very clearly. Well, I remember nothing else about that day. But I remember the waiting room. I remember it was hot, stuffy and full of people. It was August, and people were anxiously waiting for appointments. I looked at Mum and my boyfriend (now husband) and said we’d be here a while.

That’s not what happened, though. I was called in within five to 10 minutes. That’s never a good sign really, is it? Being called in to see your doctor when the waiting room is still full of people. I think that’s the moment I realized it was going to be bad news. I still didn’t think cancer. But I knew it wasn’t good.

My regular consultant was on holiday, so I had a young stand-in I had never met before. He seemed anxious and restless himself, which didn’t help. He sat us down and began to explain that unfortunately, they’d gotten it wrong. That after further tests they had now realized it was cancer. A very, very rare and slow growing one.

A lot of the rest is a blur. I remember bits and pieces, though. I remember telling myself not to cry. And I didn’t. Not for a long time. I told myself whatever I did, I shouldn’t cry. I didn’t really say anything. I sat as he told us about an excellent ear specialist he knew in Oxford who would really look after me that he really wanted me to see. My mum asked questions, good ones. I remember they were good. I don’t remember what they were. I remember being exponentially grateful she was there, asking the questions.

As we left the hospital and walked outside, I was quiet and didn’t really know what to do, think or say. I was so pleased that both Mum and my other half were there with me, so I didn’t have to tell them. I didn’t want to tell anyone. I asked my mum to call my dad and sister to tell them. I can’t remember if I spoke to them, too, or not. I just remember not wanting to be the one to tell people. I think I was worried I would cry. That’d I’d have to accept this was real if I said it out loud, you know?

Of course, this isn’t the only time I have been diagnosed with cancer. Because this cancer metastasized, so I was told about that. A few times. And each time I reacted differently.

A Recurrence (or Three)

In 2011, five years after my original diagnosis and treatment, I was still having regular check-ups with my team. I had this weird feeling something wasn’t right. I had read up about how my type of cancer often spreads, and I was worried that maybe they hadn’t gotten all of it the first time. They never got a clear margin, you see. After a few conversations and a clear head and neck scan, my oncologist suggested a chest scan. The results of this showed quite a few nodules in my lungs.

This time I was almost expecting the news. I am not sure why, but I just had this feeling something wasn’t right. So I wasn’t really shocked when they said that. What I did find harder was being told about the surgery I’d need to remove them, and how invasive that would be. I went into autopilot, though, just getting on with it. This mode of doing what you need to do can be common among cancer patients, and can sometimes lead to a bit of a burnout once treatment has ended. Some then have anxiety, depression and PTSD. I really encourage anyone who is nearing the end of their treatment after being on autopilot throughout seeks counseling to help the transition to your new “normal.”

Again…

A few years later, I started panicking again that I had more. I remember speaking to someone at Macmillan in the UK and explaining that I needed to try and get fit again to get my lungs back into shape because I was worried I had more. I wasn’t really being followed up with on my lungs, so my original oncologist arranged another scan in 2015. Yes, more nodules.

Again, I wasn’t surprised this time. And we had some other treatment options, which was good. I was happy to avoid a huge surgery again. I had a procedure in January of 2016 called radiofrequency ablation (or RFA). It wasn’t very invasive and I was only in one night. I was, however, in tremendous pain. And afterwards, I had to cough up all the dead cancer cells, and any others that got in the way. So it was actually a fairly traumatic experience.

And Again…

I was now on three monthly scans. I’d always had a few years’ break between each recurrence. So when I went for a scan in September, I didn’t think I’d have any cancer. I thought all would be clear and I’d have a few years clear so I could get on with life for a bit. I knew I would probably get more, but not yet. And then I was told there was a nodule.

This time I cried. Not in with my doctor, but outside, afterwards. I cried and said to my husband that it wasn’t fair. I was devastated.

Being Diagnosed With Cancer

So you see, I have reacted a number of different ways each time I was diagnosed with cancer. I truly believe there is no “normal” and that each person and situation is different. Some people expect it, others are completely shocked. And we all deal with shock differently, too.

If you are worried about how someone close to you has reacted to being diagnosed with cancer, you can ring Macmillan Cancer Support (in the UK) who can help you. In truth, though, it’s an incredibly personal experience, and we all process differently.

I hope this has given you some insight into what it is like to be diagnosed with cancer. What it was like for me, at least. Was it different for you? I’d love to know about your reactions. There is no wrong answer to this, only our truth, and I say own it.

Follow this journey on CatBurchmore.com.

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Thinkstock image by NanoStockk

 

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Sometimes I Don't Feel Brave for Having Cancer

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A very dear friend of mine gave me a beautifully cross-stitched framed image. It has a ring of flowers around the outside and “Be Brave” across the middle. It rather suits my style – floral, elaborate, handmade. But sometimes I have difficulty dealing with the actual part of being “brave.” I’ve been told numerous times how “brave” I am, how resilient, how much spirit and endurance I must have to endure what I have endured.

Cross-stitched framed image of the words be brave surrounded by a ring of flowers

It feels like the accolades are a bit much – am I brave just because an awful thing happened to me (which I couldn’t control), or is my reaction to the awful thing what makes me brave?

I won’t deny that the cancer was awful, horrendous, whatever superlative you wish to add. But was the long years of unrelated illness beforehand not brave? Was I not already resilient? It’s difficult when the focus is on the cancer and nothing before or after.

As a someone who underwent surgery rather than the more expected chemotherapy or radiation, I never feel quite as brave as other cancer survivors. It’s as if perhaps my surgery, my amputation, my hellish recovery is not as difficult as someone who has undergone a year of chemotherapy, or months of radiation. I know I shouldn’t feel this way – it’s not a comparison of whose journey was more difficult – but I do.

I lost part of my body, but I never had to have a port, or lose my hair, or have burns. But the reason I never had those treatments were because they weren’t an option – my cancer generally can’t be treated with chemotherapy or radiation. Which in itself is gut-wrenchingly awful. The fear of knowing if my cancer returns there aren’t many treatment options feels like having a self-destruct button in my body that might go off at any moment.

Maybe it’s dealing with the uncertainty that’s brave. Maybe it’s just carrying on each day, going about my life, that others see as brave. Maybe my insistence to return to as many things in my normal life as possible, to be determined to get as much out of the time I do have.

But I can’t help but think of those who aren’t able to do that. As far as I’m concerned, if you live a day with cancer, you are a cancer survivor. And I think of all the survivors who aren’t with us. Maybe I can try and be brave, for their sake.

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What's Behind the Mask of a Cancer Dad?

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Men can be a different sort. We can think differently, share differently and act a different way. We can also deal with stress and grief differently. As fathers of children with cancer or other life-threatening illness, we must lead through a heartbreaking struggle with no discernible direction while somehow trying to cope with raw emotions that can be completely foreign to us. After all, we’re “supposed to” have it all together — at least that’s what we’ve been told. There are mothers in our community who might feel this way, too.

the author pushing his daughter in a wheelchair, both of them laughing together and wearing Smiley for Kylie t-shirts

The author with his daughter

I can’t speak for all dads, but under a condition of anonymity, I collected some things we dads of children with cancer are feeling behind our stoic faces. Some are the fathers of survivors, some are in treatment now, and others have lost their child. While we might try not to show it, we do feel… we ache…and we hurt — often in private so no one else will see.

These are things I think you should know…

I think you should know I have no idea what I’m doing.

I think you should know I’ve steered clear of counseling because I’ve always thought I was above that, but there is so much I need to get this off my chest.

I think you should know that a few drinks in the evening is the only way my mind shuts off enough to sleep.

I think you should know I can’t sleep in long bursts. I am basically tired all the time. Yeah, I tried Ambien but felt so drugged that I decided sleep deprivation was better.

I think you should know I’ve spent my life being told I shouldn’t cry and now I cry all the time which leaves me feeling unmanly and weak.

I think you should know this lack of direction is killing me. I would follow anyone who had a plan because I don’t have any idea how to lead this nightmare.

I think you should know I see everyone differently now. It’s hard to be around people who haven’t been through what I’ve been through and I don’t love hanging out with other guys going through this because it only brings it all to the surface.

I think you should know my wife is basically a stranger now. We look solid, but we don’t talk or communicate.

I think you should know I’m having problems relating to my other kids. They seem distant and I’m afraid to be close to another child.

I think you should know I have trouble concentrating and my work suffers. In fact, I don’t want to do this anymore but we need insurance so I’m stuck.

I think you should know that on some level I feel like this is my fault.

I think you should know that I would have died for my baby but wasn’t given the option.

I think you should know that not only did I wonder “Why my child?” but I have actually wondered “Why not somebody else’s?” which made me hate myself for my own cruelty.

I think you should also know that losing a child or having a child diagnosed with cancer or some other life-threatening disease provides you with significant perspective so that trivial things in life are just that.

I think you should know I feel I did everything humanly possible from a research standpoint before my son died, but now I wish I had spent more time with him.

I think you should know I replay every stupid investment or financial decision I ever made in my life that prevented us from taking part in additional treatment opportunities.

I think you should know I feel inadequate all the time.

I think you should know that every time I see on the news that some criminal that was shot several times only to survive and commit more crimes, I think, “WTF, God, really?”

I think you should know there is a measurable amount of guilt when you realize that you think more frequently about your deceased child than you did while they were alive and well.

I think you should know I am scared of not remembering the sound of my son’s voice.

I think you should know that up until my son passed away I never thought he would die.

I think you should know that my surviving son has to live with his parents’ continuous and irrational fear that something will happen to him — even in the most innocuous everyday activities.

I think you should know that I haven’t yet decided if I want to live.

I think you should know I feel guilty that my son is alive while so many other men’s sons are dead. And I am afraid that my son will die too.

I think you should know it is OK to talk about my son even though he passed away!

I think you should know that even though I look like I am doing fine, internally I am a mess. Every day is a struggle.

I think you should know that the words “I love you” are sincere and I use them more often than I did before diagnosis — and I mean it more.

I think you should know I have a hard time feeling sad for adults that pass compared to the loss of a child. I hate that I have a hard time feeling compassion for my friends who have lost parents recently.

I think you should know I’m lonely.

I think you should know I am always second-guessing whether our treatment plan was the right thing to do.

I think you should know I am afraid that the cure for my daughter’s cancer was so close to being available that it could have been used to save her. But I also really hope it is so that other children can be saved. Such thoughts leave me a twisted mess.

I think you should know my family looks well, but I live in fear of relapse.

I think you should know I still get very anxious when clinic is coming up, and at every bruise, weakness, tired feeling, or any other thing that might be a sign of a problem.

I think you should know that I hide my feelings and fears so my boy doesn’t think he has anything to worry about.

I think you should know that while I look confident, I’m scared as hell.

I think you should know I don’t get to show my fear and concern. So even when there are things that do warrant concern, I have to bottle it up, put on my confident face, and be the voice of reason when all the while, I’m scared to death.

I think you should know that sometimes I feel guilty for wanting to be numb or distracted because memories can be too painful at times.

I think you should know I’m not as strong as you say I am. I am weak and vulnerable. I cry behind closed doors and live in fear most days. I have learned to wear masks so that people don’t have to see what I don’t want them to. I crave normalcy but I’m not sure I will ever have it again.

I think you should know the simple tasks like yard clean-up and mowing can be extremely difficult. Not because of the work aspect of it but because it’s something my son loved to help do.

I think you should know, after 16 years, I still miss my boy!

I think you should know I lost myself somewhere in this journey and I can’t seem to find my way back.

The author with his daughter, both smiling

The author with his daughter

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741. Head here for a list of crisis centers around the world.

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Why I Consider My Wife a Cancer Survivor, Even After Her Passing

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In December of 2016 I was added to the National Cancer Survivor’s Day Foundation Speakers Bureau.

I was pretty excited when I found out the news.

I had written the foundation a few months prior and had submitted my application but had not heard back. I had assumed they were not interested.

After all, my blog is entitled, “Better Not Bitter Widower.” How can a widower speak about cancer survivorship?

My wife didn’t survive.

It got me to thinking: What exactly does it mean to be a cancer survivor?

Is one a survivor if they are living with the disease? Do successful surgeries make one a cancer survivor? How about effective chemotherapy? Or radiation? Or immunotherapy? Clean scans?  Is that what defines a survivor of this disease?

Well, yes. Any of the items stated above would indeed classify one as a cancer survivor.

By typical standards.

I suppose I am atypical.

Most would say my wife is not a cancer survivor. I would say they are wrong. My wife is a cancer survivor.

Cancer may have taken her life, but the fight is not null and void.

Her fight, her bravery, her strength, her grace. Her smile. Her very being. The beauty that was her soul. Cancer did not take these things from my wife.

My wife may no longer be here. Cancer may have forced her Home. But my wife survived cancer.

Michelle survived cancer because of how she fought. Brave as could be.

Michelle survived cancer because of how she lived. Full of love.

Michelle survived cancer because of how she smiled. Genuinely, and up until the very end.

Michelle survived cancer because of the memories and enduring legacy she leaves behind. She will never be forgotten.

The typical definition of a cancer survivor may be preferred. I hope successful surgeries, effective therapies and clean scans become more of the norm. I hope that one day, they will find a cure.

Until then, know this: Once a cancer warrior, always a cancer warrior. Once a cancer survivor, always a cancer survivor.

That rank, it can never be taken away.

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Thinkstock photo via Ricardo Reitmeyer.

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Revisiting My Cancer Journal, 30 Years Later

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When I was diagnosed with brain cancer as a young adult, I remember thinking, “What would I do if I could survive 10 more years? How would I change? Who would I become?” As my treatment progressed, I tried to answer these questions through journaling. Now 30 years after my diagnosis, I used the anniversary to look back at what I wrote.

One thing I found is that I wasn’t concerned with writing beautiful essays or eloquent entries filled with imagery. Instead I was a list-maker. My old notebooks are filled with my ideas about how I planned to create a better, healthier, version of myself. As it became clear that my treatment was working and that I really might have 10 more years, or 20, or even 30, I rebuilt my life with these bullet points in my journal as my guide—my insights and objectives; the words of inspiration I heard, read, or discovered within myself; the emotions I held in my heart that I poured out on the page; my limiting beliefs that I aimed to shed and those aspects of myself I wanted to change.

Here are some of the things I wrote:

1. Believe there is enough time.

After my diagnosis, I couldn’t shake the idea that I wouldn’t have enough time to do everything I wanted to do—whether in my whole life, or within each single day. I loved life (and still do!) and have so much to accomplish. It wasn’t until I began to realize that “not having enough time” was just a construct—just a belief I could change­—that I stopped rushing to cram so much into every day and starting accepting my experiences and accomplishments for what they were. When I stopped rushing, I found that every experience had more meaning—that these things I could have rushed past held far more richness than the next hurried thing I had been rushing toward. By slowing down and sometimes doing less, I got more.

2. Allow yourself to be selfish.

Cancer allowed me, for the first time in my life, to focus on myself. Cancer gave me permission to say, “I’m important” and to say “no” when I needed. I let myself “eat dessert first” and not feel guilty about it. Now in my life after cancer, I try to realize I still have the right to make myself a priority. It took being sick to let myself come first.

3. Being positive is not being “up” all the time.

At first, I coped with my cancer diagnosis the same way I coped with other difficulties in my life: By not letting myself feel my emotions. I had to rally, be in charge, solve the problem, stay positive! Eventually, through my journey, I learned that being positive wasn’t just about being happy or strong. For me, being “positive” meant realizing that I could impact the course of my disease. When I finally let the tears come, that’s when my emotional healing started.

4. Put yourself “out there.”

I know firsthand how isolating illness and the emotional recovery from illness can be. Without letting others know what you need or what you think or feel, all they can do is guess. And they usually guess wrong. Being yourself—being real—gives people something to relate to and draws them in. I desperately needed this connection during my cancer journey, and putting myself out there as myself was the only way to find it.

5. Define the meaning of illness.

At some point, many people facing health challenges ask, “Why me?” I know I did. In fact, I love this question because it’s a doorway into exploring the things illness can actually bring to your life. For me, my cancer gave me freedom to choose the life I wanted to live. My mission became to know myself well enough to be who I am in the world. And from that day, I have sought to understand the complexity of who I am and what makes me, me so that I can be authentic in my relationships and my life. My cancer experience helped me to discover what “me” meant in the first place.

It’s hard to believe I began my fight against brain cancer 30 years ago. Now as I look back at what I wrote, I truly believe that the process of introspection I set down in my cancer journal has helped me. Today, cancer remains a part of my identity, and I am proud of it. While it forced me to change, it also provided the opportunity to rebuild myself with consciousness and intention—to free myself from who I had been so that I could become who I am.

Sheri Brisson is founder of the site DiggingDeep.org.

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How Grief Can Resurface With a Second Loved One Facing Cancer

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The day before my parents’ 40th wedding anniversary, my father, Bill, broke his arm. What may seem like a simple, common injury, was not for my “larger than life” dad. For him, a broken arm was the beginning of an almost four year battle with multiple myeloma. My father fought through chemo, radiation, platelet infusions and even a stem-cell transplant. Devastatingly, we lost my dad on April 4, 2012.

Our family trudged through our first holiday without our patriarch only four days after my dad died. One of my nephews had his first-communion only weeks later. There was an empty chair at my oldest nephew’s high school graduation where my father should have been sitting, proud of his oldest grandson preparing to head off to college on a Division 1 golf scholarship. One of the biggest reminders he was gone, for me anyway, came in July of 2014 when I gave birth to my first child, Bill’s fifth grandson. I named him William, after his Grankie, the man he would never get to meet. The man who would have given him sweets after I said no. The man who would have let him have cake for breakfast during camping trips in the big RV. The man who would have loved him with a strength that moved heaven and earth.

You find a way to deal with the reminders. They don’t hurt less, but they become part of your new normal. It’s little things that hit you in ways you can’t explain. Sometimes, you’re walloped with grief and it sends you reeling backward so hard, you feel your breath escape your lungs and your stomach turn up in knots.

Hearing your 43-year-old brother say the words, “I have cancer,” can shake you to your still fractured, still healing core.

There was a certain ignorance I had when my father was diagnosed. First of all, I’d never even heard of multiple myeloma. It wasn’t bone cancer or leukemia or any other kind I had a passing familiarity with. Second, this was the first time my family had to navigate such a diagnosis. We had known people with cancer before, but they were friends or relatives that didn’t live nearby. While everyone is aware of how deadly cancer can be, I had never seen the effects up close and personal, and I don’t think it’s possible to understand them until you’ve watched a loved one deal with the constant sickness and pain that comes with the disease and its treatment. My father never let his family know how sick he truly was or what the doctors were telling him in terms of how his cancer was advancing, or how grim his prognosis had become. We thought he had a good chance of survivial and his decline took us all by surprise. His death came quickly after we learned the truth.

With a second loved one’s diagnosis, there is no ignorance. You are incredibly aware of the possibilities, sometimes so aware that all the possible “what ifs?” hit you so hard you feel bruised.

Fortunately (ironic using that word in relation to having cancer), my brother’s prognosis is good. We live in an area with amazing medical care that includes top hospitals in the country. People come from all over to seek help and we only have to drive 45 minutes. The oncologist believes my brother can avoid surgery, and chemo and radiation can get him cancer free. Treatment is going to be rough, though, and all the side-effects are to be expected: hair loss, nausea, feeding tube, etc. But in the long run, those will go away, and hopefully so will the cancer.

My brother is having lasers pointed at his face and medicine after medicine pumped into his system. The man who taught him to be strong, the man who could commiserate with his situation is gone. I cannot imagine what it must be like for my brother, going into treatment every single day, being told he has an amazing chance to be cancer free, and wonder why this wasn’t possible for our father.

Despite the optimism and strength of my brother and family, there are moments when the weight of my thoughts seems crushing. Even in the moments when I am not fearful for my brother, the grief for my father feels fresh and new. Even when I am positive my brother will kick cancer’s ass, I am reminded our father is gone. I am reminded my family is going through this again. Cancer took my father, and now it threatens to come for my brother. And while I am confident my brother and his medical team have a good chance, the memories of five years ago keep resurfacing, and I have to try with everything I have to push them back down.

Editor’s note: This story has been published with permission from the author’s brother.

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Thinkstock photo by: vadimguzhva

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