The Day My World Turned Upside Down

Today marks nine years to the day I was told the small subcutaneous lump I’d had removed form my right forearm a few weeks before was cancerous. It was the day my world turned upside down.

A few months before I found a the offending lump and was Immediately concerned, as it became painful and had grown over fairly quickly. When i visited my Oncologist in Oxford we decided that even though didn’t appear to be any real cause for concern, I would be able to have it removed if I wanted. I thought this was best as it was uncomfortable and unsightly.

Six months went by from visiting the team in Oxford to having the lump removed at Northampton General Hospital in September 2010. By this point I had graduated from University and moved to Windsor to start my first job as a graduate.  After I had the lump removed, I was told by the surgeon’s team that I would have to come back a week later. From my previous experience of having the cancerous mole removed from my neck five years before alarm bells began to ring. I gave myself a little pep talk and convinced myself it would simply be because i needed to have the stitches taken out. Looking back, I’m sure the surgeon who removed the lump could tell there was something wrong.

I’d had so many follow ups in clinic during the five years before that had come to nothing so I thought I knew what I was doing. The clinic ran late and when I finally got called in for the appointment I was asked to change into a hospital gown. I was on my own and the surgeon came in followed by a lady who I later discovered was a MacMillan) and I knew something was really wrong.

My memory of this meeting is a somewhat hazy. The surgeon examined my neck and arms for any other lumps. Looking back he was probably looking for any swollen lymph nodes. He asked if I had brought anyone with me to the hospital as I was on my own. I was told the lump was melanoma and it had spread from my original mole five years earlier. I was then swiftly booked in to an appointment with an Oncologist specialising in melanoma at Northampton General Hospital the next day. I’ve now been seeing the same Oncologist for nine years. That’s 3287 days!

Subsequent MRI and CT scans showed a single lung tumour and a single brain tumour. In the month that followed I went from being a seemingly well 23 year old graduate to a stage 4 cancer patient, registered disabled and unable to go to work, and facing the very real prospect of an imminent departure from the world. Talk about life throwing me a curveball

I am certainly not a statistic and me being alive and well and writing this post it as close to a miracle I will ever get. For me, September is a month full of various triggers and cancer related anniversaries, but October is just the same, closely followed by Christmas and Birthdays as well as Summer time, so in effect the whole year.

I have spent the past 14 years of my life as a cancer patient and next year marks a decade as a stage 4 cancer patient. Its a life sentence and some days I find the whole situation beyond comprehension. Being focussed on the now is much easier said that done with cancer demons floating above, ready to pounce at any time.

I was told upon diagnosis in 2010 that people with my type of cancer at such a late stage lived for an average of 18 months. There have been numerous points over the past few years when I truly thought that I wasn’t going to make it for much longer. It’s looked very bad for me numerous times and I know my family felt it too. I’ve been on sick leave from work and had to come to terms with the fact I might never go back.

Three and a half years ago I was in hospital, having had surgery to remove cancer from my bowel for the second time. I had hardly any hair of my own, and I was unrecognisable from my ‘old’ self. Now I look like the 2010 version of me, with a full head of hair and most of my cancer scars covered up. On the outside I look the same, but I am a whole new version of myself compared to nine years ago. My twenties were really exhausting and stressful, and I feel like I missed out of so much, relationships, work opportunities and generally having fun. So far the first 2 years of my 30s have gone better than the majority of the last decade. I am treatment free and my oncology appointments are currently kept to a minimum. I hope cancer continues to lay low and not dominate the next decade of my life. My world has been turned upside down but I’m living on the flip side and that seems ok for now. Keeping everything crossed for my scans in two weeks.

Mind Your Language

More often than not it’s difficult for people to find the right words to say to friends and loves ones who have cancer. It’s not easy to work out the right thing to say and sometimes it can come out wrong and offend people, even with the best intentions at heart.

Macmillan Cancer Support recently launched a campaign on their Facebook page to help raise awareness of the language used when speaking about cancer, in the hope to start a conversation and make it easier for those in the cancer community.

Even though I can often use this language myself it can prove problematic. I am not ‘brave’ because I have cancer, I have no choice in the matter, and I didn’t decide on the path my life has taken. It’s not something I would have gone into voluntarily, and trying to stay alive is not a choice. It’s isn’t as though I am picking if I should have jam or peanut butter on my toast in the morning.

People telling me to ‘keep positive’ implies I am not allowed to show how scared I am, and therefore show weakness. I’ve been trying my best to positive for years, but do moments of sadness show that I am weak and negative? It took me a long time to accept I needed help in the form of antidepressants, and I think part of that is the expectation that just being positive would be enough to help me through. News flash: cancer doesn’t care if I am positive, or anyone else for that matter. Cancer doesn’t discriminate. Yes, It doesn’t wonders for my mental health to be in a good frame of mind, but this suggests those with negative mindsets die from cancer, or their symptoms will progress, and if a person keeps positive they will one day walk free. Are the people who live the only ones that fight hard enough to stay alive? Wrong.

I am positive the majority of the time, but I have stage 4 cancer and there is no chance I will live my life without this burden, and I continue to learn to live with it as best I can. I am just getting on with my life, going to work, coming home and attempting to be normal (whatever that is!). I am doing the best I can, but sometimes the language used suggests I am just not trying hard enough!

I don’t look like a typical cancer patient and present; I have my own hair and am able to hide my portacath and surgery scars easily. When I explain my situation to new people they often seem shocked, maybe I don’t look ill enough to be a cancer patient? Especially a stage 4 cancer patient who has metastatic cancer that has spread to multiple organs. What does cancer look like anyway? Its not like an identity parade to spot a criminal. I don’t look disabled but I have a free bus pass and monthly disability benefits just the same as others who have a physical disability.

I might look well on the outside, but looks can be deceiving, so I always try keep in mind that I shouldn’t judge a book by its cover, you never know what’s happening underneath. If someone looks tired I’ll try to ask them what they’ve been up to, rather than tell them they look like they’ve not slept for days, it doesn’t aways help to be told you look crap!

I am not annoyed at others for saying something that might come across as insensitive, it’s not exactly straight forward and it all depends how I feel on any given day. Macmillan’s aim is to help change the way cancer is spoken about to make it better for those going through it. In the time is taken me to write this post I’ve seen two of their support adverts on television, so well done to Macmillan for continuing to raise awareness and helping others avoid a classic case of foot in mouth!