My name is Aurélie. I’m an editor in the Cancer Information Development team and I’ve been in remission for two years. This is an aspect of my personal experience and a topic which I feel should receive greater attention.
If you’ve had cancer and have been through treatment, you’ll know something that many around you rarely do. When cancer is over, it’s not over. It does not stop at the gate of the hospital after that appointment when you heard the word ‘remission’. It’s not as simple as that sigh of relief people give once you’ve told them you show no sign of cancer anymore. Because cancer and its treatment are like the tip of an iceberg. They are what everybody sees and knows about. The rest is hidden, deeper and unknown.
I was 30 when I was diagnosed with cancer and whilst the treatment was difficult and tiring at times, I knew that would be the case, I was expecting it. What I did not know is that the aftermath of cancer would prove so challenging and, at times, extremely distressing.
There is generally little awareness about the long-term consequences of cancer. When I finished treatment, everybody was relieved and people told me how happy they were I could now move on with my life. But could I? Coming out to the other side of cancer does not mean getting your old life back or resuming life where you’d left it. It can be a lot more difficult than that. Some things may be a little bit different, others may have been radically altered.
Cancer treatment caused side effects that have changed my life forever. Having radiotherapy to the pelvic area means that I will never be able to conceive a child. The consequence of treatment on fertility is not a light issue. It is permanent, life-changing and a reminder that even if the cancer itself belongs to the past, its effects live on.
And this is exactly what can be so difficult to accept. Especially since people around you may not realise it. They may not know how much the long-term side effects of treatment can affect you, even years later.
The consequences of cancer treatment cover an extremely wide range of side effects. You may have issues with your body image, you may have to live with a stoma, you may have lymphoedema, or suffer from fatigue for example.
Cancer also affects work. I had to give up my job during treatment which made me less competitive on the job market. Sometimes you may even not be able to return to your occupation. Being affected in your professional capacities can be extremely hard to come to terms with. It can feel exhausting and unfair to have to cope with all those problems when you’ve already come through a very difficult time in your life.
It sometimes feels that I’ve received a double sentence – the illness and whatever long-term side effect I am trying to deal with.
Macmillan has a range of free booklets that contain information about those various long-term side effects of cancer. These include Cancer and fertility, Understanding lymphoedema, Sexuality and cancer, Work and cancer, Coping with fatigue. You can order them online or call our support line 0808 808 00 00.
Although evidence shows that thousands of people suffer from the consequences of treatment, the phenomenon is rarely mentioned. This is also because people may feel guilty to complain about the aftermath of cancer. They believe the only emotion they should feel is gratitude to be cancer free.
It’s not rare to really struggle with the long-term side effects of cancer, the immersed face of the iceberg. Macmillan has done some research into this and published a report entitled Cured ... but at What Cost? [PDF] in order to raise awareness about the consequences of treatment. If you’re suffering from the long-term side effects of cancer, it’s important to realise that you are not alone and that help is available.
We're with you every step of the way
The Macmillan team is here to help. Our cancer support specialists can answer your questions, offer support, or simply listen if you need a chat.
Call us free on 0808 808 00 00.
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