This is a topic I have wanted to write about for some time. What being diagnosed with Cancer is really like. For those of you who are wondering what it’s like, or 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’. You can behave and react however you like, and say and do whatever comes.
Being told you don’t have Cancer
Yeah, 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 had 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 time (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 changes. And something unexplainable can often 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 that 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, 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 5-10 minutes. That’s never a good sign really, is it? Being called into see your Doctor when the waiting room is still full of people. I think that’s the moment I realised that 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 that I had never met before. He was obviously 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 realised that it was cancer. A very, very rare and slow growing one.
A lot of the rest is much of a blur. I remember bits and pieces, though. I remember telling myself not to cry. And I didn’t. Not for a very 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 that would really look after me and 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 that she was there, asking the questions. For a moment I was grateful that she’d already had Cancer, so she knew what to ask. Yes, I know that’s a horrible thing to say and to feel. But it’s the truth. In that moment I was grateful.
As we left the hospital and walked outside I was very quiet and didn’t really know what to do, think or say. I was so pleased that both Mum and Mike 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 metastasised, so I was told about that. A few times. And each time I reacted differently.
A Recurrence (or three)
In 2011, 5 years after my original diagnosis and treatment, I was still having regular check-ups with my team. I had this weird feeling that 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 that 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 is common with Cancer patients, and can sometimes lead to a bit of a burn out once treatment has ended. Some then suffer from anxiety, depression and PTSD. I really encourage that anyone who is nearing the end of their treatment after being on autopilot throughout seeks counselling 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 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 Radio Frequency 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 3 monthly scans. I’d always had a few years break between each recurrence. So when I went for a scan in September time, 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 fearing being diagnosed with Cancer then please do not worry about how you react. Just do you.
If you are worried about how someone close to you has reacted to being diagnosed with Cancer, then you can ring Macmillan (UK) who will help you. In truth, though, how they deal with it is all about them. It’s an incredibly personal experience and we all process differently.
I hope this has given you some insight into what it is really 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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