Understanding ME after a cancer diagnosis: My thoughts on how life changes after cancer

“You must be so pleased/relieved/happy!” said friends and family following the news that I was still in remission after my two-year check-up. Relieved, yes. Happy, not in a way you might expect. Don’t get me wrong, I am extremely grateful that I don’t have cancer anymore. But I’m not going to jump in the air or high five a stranger because of it. And a few of my clients have experienced the same anti-climax following positive news regarding their cancer. One said, “If I crossed the road and got to the other side without being hit by a bus, I wouldn’t celebrate that either.” A graphic thought, but true.


When doctors said my cancer had gone I was relieved. I was relieved because I didn’t have to sit through another round of poison chemo, get burnt by the rays of radiotherapy or visit the hospital every single day of the week. I was relieved that I felt just ok again, that I didn’t want to throw up or sleep every five minutes, or feel so weak I couldn’t even make it downstairs. But I didn’t really celebrate. In all honesty I was completely lost. My life had been turned upside down in a single minute, I was then thrown straight into treatment after losing a baby. I spent the good part of three months in and out of hospitals. And then just like that, it was over.


Two years on and I still struggle to process what has happened. When you’re in it, you just try to survive. To get through each day; ride the wave of hospital appointments. Even though your life feels like it’s frozen in time, the world around you continues. And when, luckily for me, the treatment was over and the cancer had hopefully gone, you re-join ‘normal life’. And you are expected to just jump back in where you left off. Even as the shell of a person I was at that time. For some, treatment continues for the rest of their lives, an ongoing reminder of what they have been through or are continuing to live with.


But whether or not I physically have cancer, the day the doctors said the ‘c’ word has changed my life forever. I am not the same person I was before, or am I living the life I had planned. Am I grateful for what I have? Yes of course, but that is not the point. Through no choice of my own, cancer took a lot from me and my family. And physically, my body has also been through huge trauma to try and eradicate it. Nine rounds of chemo poisoned my insides, gave me permanent hearing problems and tinnitus. Radiotherapy destroyed my reproductive system. The list will bore you. But mentally I am different too.


I’m no longer an optimist. That’s not to say I don’t see positives, I do, and I regularly practice gratitude. But now I need to be more of a realist. I know first-hand how life throws up some pretty brutal challenges. Some of these don’t end well. Perhaps being more realistic about life is a protective measure I’ve taken on to help me manage difficult situations. But when you are faced with a life-threatening illness or worst-case scenario, you realise that sometimes life is a bit too sugar coated. We are not immortal. We will all die eventually, some younger than others. Some may feel this realism can come across as me being quite blunt, but I suppose I have learnt to express fact more directly. Harsh but true, some would say.


When you have cancer and are going through treatment, people tell you how’ brave’ you are. How ‘strong’ you must be. How you need to ‘fight’ the disease. Now I’m a competitive person; I’ve always tried to be the best I can be. So these words of winning and losing meant I put huge pressure on myself to ‘fight’ a disease that I had no control over. To overcome deep emotions I still struggle to come to terms with. Having cancer isn’t a battle. You don’t suddenly become stronger to face the fight. You literally have no choice but to get through every single day, hoping that it will be over soon. And I count myself lucky that my treatment did end. The same goes with grief and shock – this doesn’t miraculously disappear as time goes on. You learn to deal with it, manage it, some times better than others. But it will always be there.


I know a lot of what I’m explaining here means people fear they will say the wrong thing around someone who has experienced cancer or loss. Or aren’t quite sure what to say. I appreciate it can be difficult, but our skins are pretty thick. Don’t ignore what we have been through, it’s part of us now. Please don’t walk on eggshells, ask questions, talk about it, be aware of what we have been through. Those who succeed don’t pretend to understand, they listen and accept that what has happened is terrible. They don’t try and fix problems, just work through them openly. I must admit that for me, some particular times I feel more sensitive than others but I’m normally quite open about how I feel. And I can’t always predict when those times will be, although they tend to fall on key dates relating to Jacob, my cancer diagnosis and in the lead up to a check-up or scan.


As those who have experienced a cancer diagnosis will know, when check-up time comes around, the fear kicks in. The fear that the news won’t be good. The fear that I’ll have to do it again. Or worse still, it won’t work this time. Yes, perhaps in my case, the likelihood is that I will be fine, but that doesn’t stop the dread. Because now I know what the worst looks like, it can happen again. And that is why I have to prepare. Get ready for potentially devastating news, taking me back to a very dark place. Just in case. So far the news has been positive. But the highs and lows are so extreme it’s exhausting. That in itself can take a long time to repeatedly recover from.


Perhaps because cancer makes you face up to the fact that we are not immortal, it also makes you much more aware of what is important. Choices and decisions are easier. If you want something, you make it happen. A lot of the career decisions I have taken since I was ill have been more straightforward. I have felt more determined to make things I want happen, happen. Not because of cancer, but because my outlook has changed. Because I finally understand that life is what you make it. And what’s the point wasting precious time doing things you don’t care so much about, or with people who don’t make you happy.


So cancer has left some huge scars, mentally as well as physically. Don’t get me wrong, I’m happy I don’t have cancer. The alternative is a fear I live with daily. But I’m fortunate that at the moment I am well. And because of this, I have dedicated my work to helping others feel better about themselves before, during and after cancer. Is it hard seeing cancer every day? Yes and no. I see the good and bad sides of cancer through my work. The highs are so worthwhile and rewarding that they make the lows bearable. I get to spend time every day with very special people who just ‘get it’ and I would never change that.


I’m extremely grateful for what I have, cancer made me more aware of this. But I do also grieve the things I’m not able to have, and things we lost. I struggle sometimes to live up to the expectation of a ‘survivor’ because some days I want to hide away and weep. But I’m learning to accept that life after cancer is very different, despite what others may see. At the back of my mind there is always a shadow haunting and motivating me. Reminding me that life is short, that life can change in a matter of seconds. So I’m doing my best to just live it.

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