What Being Diagnosed With Cancer Was Like for Me
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?
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.”
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.
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.
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