Kidney Cancer; One Year On

This time last year I was 32 and I had not long been told that, while doing a CT of my upper GI tract for stomach reasons, they’d found a mass on my right kidney. I told myself it would just be a cyst but after another CT scan focusing specially on it I was told otherwise. I instantly thought – it couldn’t be cancer could it? I looked up the numbers and they reassured me. Less than 2,400 women in my age range (30-34), in the UK get diagnosed with cancer each year. That’s a tiny number. Then only about 1% have kidney cancer and most of those are hereditary – and luckily for me kidney cancer doesn’t run in my family. As you can imagine I felt pretty okay about it all going forward. My main worry was that they’d be grumpy about wasting their time on nothing.Kidney cancer incidence in the UK 2012-14. Shows a higher incidence for men than women, mostly affecting those over 50.

Kidney cancer incidence in the UK 2012-14. Image from Cancer Research UK.

However, from the moment I got the post scan appointment to see a Urologist things seemed odd. There was only a month to wait between the second scan and the appointment. The Urologist was not based at my normal hospital. When I arrived for the appointment I rolled into the outpatients waiting area and before I could say anything a nurse called out “Hello! You must be Emma. The doctor is just finishing something but come sit down here where it’s more comfortable than this area. I’ll sit with you now and be there through the appointment – would you like a drink?”. That is not my usual experience of hospital outpatients. With hindsight I shouldn’t have been as shocked then, when they told me it wasn’t nothing. But no amount of hinting could have prepared me to hear it was kidney cancer.

I thought I was immune to that sort of shock. I’m a wheelchair user, I’ve been given major life changing news about my health before, but something about the very word “cancer” shook me in a way “you’ll be in pain for the rest of your life” or “you’ll need a wheelchair” never did. I don’t really remember much about the rest of the appointment with the exception of agreeing to surgery, getting a really positive feel for the consultant, being given a helpful advice pack and the phone number of the nurse. She was to be my official MacMillan nurse. I had a MacMillan nurse. I had cancer.

As we wheeled out to go have some bloods done, I looked up at my husband. He was clearly trying to be strong but the fear in his eyes was visible. It struck me that not only did I have cancer, but that it was causing him pain. That my body was causing him hurt. My game face went on and I started trying to reassure him, partially hoping that it would reassure me too.

After an emergency trip to the loo (I understood the phrase “I’m shit scared” a lot better after that) I started to contact my family. The game face stayed on as I listened to tears, fear, and heartache. I hated making them hurt and wanted more than anything to be able to tell them it wasn’t so but, as they say where I’m from, there was nowt doing. That game face that started off as being a protective measure, a way of just getting through the next few hours, was something I would really struggle to then take off.

The next month was surreal; I was so stressed I couldn’t even begin to answer questions like “How are you doing? Are you holding up?”. Instead I’d just say I was okay, repeat some lines about how I was going to be fine, and tell them I was most worried about [insert name of loved one here]. I can’t speak for others, but I think it’s common to not actually like talking about how you are feeling until you have a decent idea about how you are feeling; and it’s hard to work that out while wearing your game face.

A dog in a burning house, sitting still at a table saying

Game face on.

Looking back I wasn’t ok. Not at all. I spun from trying to stay strong and having people tell me how in awe they were of how I was keeping it together, to, in my private moments, feeling scared and depressed. I felt like a hollow wreck. I understand why it was like that. I had just been told that I had cancer and now suddenly my life was being measured in five-year survival rates. I was having to face my death, possibly through a mechanism that I had spent my entire life being told was slow and painful. The few times I did try to open up about it I’d often find myself getting angry at the people listening. Either they were reassuring me it was all going to be fine, which felt like they were telling me I was being silly to feel scared; or they would get upset about the possibility of me dying and I’d feel like I had to then be the strong one.

The thing is, kidney cancer is scary. Once it’s started to spread it’s hard to manage and doesn’t respond to chemotherapy. Because it’s so rare in a woman my age the statistics available were a lot more unreliable than they would be for a man in his 70’s. As I mentioned earlier, I had never even considered for an instant that this would become part of my life. This was a voyage into the unknown. The only light I had was the fact that the prognosis is good for those caught in the early stages and treated promptly.

I had a partial nephrectomy through open surgery (because of existing abdominal issues), and then spent the next four weeks trying to heal and also to not drive myself to distraction wondering what stage the cancer had reached. I didn’t do as well as I would have liked at the latter. The anxiety in the days before left me feeling physically sick. Luckily they told me then it was a Stage 1, grade 2 Clear Cell RCC (Renal Cell Carcinoma). I was officially in remission! I would need scans every year for the next five years to check it hadn’t come back but for now I was ok. No they didn’t know why I had got it, no they couldn’t suggest anything I could do to help make sure it didn’t come back.

The next few months I spent trying to put the operation behind me and move on. That was until I got an appointment letter telling me that I was due for my six month on CT scan. I put the letter down and thought no more of it until about three weeks before, then suddenly it was all I could think about. My thoughts became like this; “Oh I wonder if we need some more shower gel best go check… The cancer might be back. How will I tell people? Did I do it to myself? I wish I was thinner. It’ll be fine, stop panicking. That’s what they all said when I told them I was worried they’d found a lump – and it was cancer! Ok, we do need some more shower gel, go add it to the list before you forget. You’ll be fine. But what if…”.

Worrying about the scan made me snappy and exhausted. Even when I buried the fear it still seemed to influence my behaviour. The scan itself passed fine. I was a bit of a novelty to the staff who could not believe someone my age had kidney cancer. I had naively hoped that having the scan would end the worry, but it seemed to just give it wings. The four weeks waiting until I got my results were not fun. I was tearful and snappy and my sleep suffered a lot in the last fortnight. I discovered too late that this was a common occurrence and that many referred to it as “Scanxiety”. I had thought it was just me being weak but something about knowing I wasn’t alone, or letting the supposedly heroic club of cancer fighters down, helped a bit.

Scanxiety: noun. The uneasiness associated with waiting for the results of cancer scans

Scanxiety, it’s a thing and it sucks.

On the day I got my results I was a mess. I always think that until the cancer diagnosis I’d never really believed (deep down) that I would get really bad news at one of these appointments. Now that illusion had been shattered and it felt like any number of negative outcomes were now a lot more likely.

I was lucky. They told me that it hadn’t come back, and hadn’t metastasised before removal. I was definitely in remission! I would now go through five years of watching to make sure it didn’t return, and if it doesn’t then I’ll be considered cured. It was a huge relief, though not quite as much of one as I imagine it will be in five years time should this prove to be a one off.

Looking back over the last year I can see that it’s been a huge emotional roller-coaster. Sadly it’s been one that I’ve struggled to really share with people, through no fault of their own. It’s been partially because most of the people in my age group that I knew had never had personal experience of cancer, which left me with no one to really talk to about it that I felt understood where I was coming from. Partially it was because I didn’t want to upset people, especially the kind of lovely people that liked me enough to be upset by the idea of me dying. How do you talk about funerals and needing to think about a will with loved ones that, no matter what they say, don’t want to hear it? Finally, it was partially because talking to people made it feel more real and I personally couldn’t cope with that. It’s easy to imagine dying and feel ok with it when you don’t have something like cancer, it’s less easy when it becomes a serious possibility regardless of what actions you have taken or choose to take going forward. The self enforced emotional isolation was difficult. Even surrounded by people wishing well I would feel alone and separate. Which is one of the reasons I’m writing this down to share. I hope that while the world shows people with cancer as superhuman warriors, constantly smiling, constantly optimistic, this little bit of blogging lets someone else out there know that they are not alone in not feeling that way.

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    • Lizzie
    • February 20th, 2017

    Love you xx

    Like

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