Lucy’s story
In 2013 Lucy Atkinson was diagnosed with a sarcoma in her left thigh. She was living with her partner, Rob, and her 23 year old son James, who has autism.
Response
I remember going out and buying a new outfit which I think says something about me; that I thought that if I had this new outfit, it would protect me from getting bad news. So I was going to go and see this guy, Mr Gordon Beadel (Rob said that means he’s a long way up the hierarchy). I remember being called into his office and I had this black and white jacket on and these black pants. And Gordon had a feel of my leg and he talked like pilots talk when it’s really bumpy; very, very calm. I just sat there sort of staring at him. He said, “I think it’s a sarcoma and it’s about 9cm long and it’s deeply embedded in your thigh in your soft tissue. We will work out a treatment plan. I need to identify this properly.”
I started crying and then I said, “I just want you to tell me - am I going to have radiation and chemo?” I was really scared of having chemo because I know that it’s pretty gruelling. And he said, “No, actually. We don’t use chemo for sarcomas because it’s ineffectual so we will give you radiation and then you will have surgery.” So he was kind of saying these things and I wasn’t really taking them in. There was a nurse there and she said, “Is there anything you want?” And I was really weird and I said, “I want a Werthers Original!” I don’t know what came over me! She went and found one and I just about gagged on the bloody thing. It was disgusting. I just didn’t know what I wanted.
Somewhere in the middle of all that he said, “I am going to send you up for a biopsy.” So we walked out and I went into the toilets and there I was in the power bloody suit thing and I had mascara right down my face. Everyone in that waiting room must have looked at me.
So we went up to have the biopsy. I guess after that, they confirmed that it was cancer and I guess I was in shock because I have never been a person who has worried about my health that much
I thought, “How am I going to manage this with James?” I did feel relief about the chemo because I felt like I could hide my illness from James and that was really important to me because I knew he wouldn’t be able to deal with me being ill. If he couldn’t deal with it, the whole household would just descend into chaos. So in a weird way, it probably sounds a little strange, but I was relieved that I thought, “I can probably have radiation and hide that from James.” And it was true. He never knew the whole time. And I can probably have an operation and hide that from James. I can just say, “I’ve had an operation.” And that was probably my uppermost thought. “I will be able to hide this from James.”
I was shocked to find out that I had cancer, but I was kind of relieved that I knew what I was dealing with. It was kind of like, okay, now we can get on with this thing.
I went and saw Gordon who was going to do the operation and Iain Ward, the oncologist, and they were very kind and they were very clear. But the thing I hate is that you sit in those tiny little rooms and there’s no windows. I just remember sitting there thinking, “Oh, it’s too hot in here and I just want to go outside.” But they talked me through it all, about the radiation and then the surgery. My brain did this thing where I thought, “I can’t actually deal with thinking about all this at once so I’m going to have five weeks of radiation, then it’s going to be Christmas, then after a month I’m going to have surgery, and I’m not even going to think about that.” That’s the bit I was most scared of. So that’s what I did. I kind of put it into a holding pattern. I think that’s what your brain does when it’s under stress.
Creative things
First of all I made a love tree, which was a branch that I found. I realised that I needed to really take in the love that was being sent to me from the people who were able to send it. Because when I got diagnosed, a guy I knew years ago emailed me and he said, “I’m not going to give you any advice except that love will come from places you least expect it.” As it turned out, Arthur was right. Some of the people who might have been there for me, disappeared into the woodwork, and other people came out of nowhere. Like some of James’ caregivers, and the people from my work who took me out for lunch. And people would send me things. So I started this little tree. It was just this bare branch and every time something nice happened, or someone rang me, or someone said something or sent me something, just random little things, I’d write it on a little card and hang it on this tree so it looked like Christmas. It was a love tree and I had it in my living room because I knew I had to focus on the good things.
Then I started journaling. I started making this scrap book which is just things I had written, things people had said to me, cards people had sent me. It’s got all sorts of things in it and it got fatter and fatter and fatter. I put in the picture of my pre -radiation and after radiation MRI’s to show how much the cancer had shrunk. And I put in the letter I wrote - I wrote a letter to my lump and told him what would happen if he didn’t get out of there fast. I did a whole lot of things actually. And they all helped. It was just a survival thing. Instead of waiting for someone to wave a magic wand and make me feel better, I guess. That wasn’t going to happen.
Six years on
I feel pretty proud of my body really. I’ve got a hollow in there where they took muscle out. You can hardly see the scars. I used to not want to wear swimming togs because of the scar down my inner thigh but now I realise that people have all sorts of scars and things on their bodies and no one thinks anything of it. I just think I feel pretty proud of it. That it’s done that and come out the other side, and healed me. I didn’t like having to go for the chest x-rays every three months. My sister-in-law coined this phrase, called ‘scanxiety’. That was horrible for the first year. Then the second year it wasn’t so bad. Then they start to be six months apart. Now they’ve stopped. I suppose I think that at any time it could come back but I don’t think about it a lot. Does that answer that question?
Six years down the track I don’t worry so much. There are a lot of lumps inside you that you didn’t know were there and you think, “Oh, what’s that?” I have gone in to find out that the funny little lump on the end of my clavicle is in fact a funny little lump on the end of my clavicle and not anything. That was about three months ago. So occasionally I will still find something and think, “Oh, I didn’t notice that was there.” So there’s those things but in general I think about it less. I don’t think about my leg, or my scar much. I will buy a bikini - haha. In general I feel a little bit more under pressure to do the things I want to do because I don’t feel like I can take growing old like everyone else, for granted. But that’s not a bad thing. I know it sounds funny but it’s forced me to try and do some more of the things that are important to me, and not just for my family. So I think that’s stayed with me. But in general in terms of worrying about my cancer, I don’t think about it too much.