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.

September Sadness

This month has gone very quickly, having been away on an exciting work trip to Japan I am now back in the real world. My three year blogging anniversary took place whilst I was away. The past year has been the most significant as I stopped taking Immunotherapy drug Pembrolizumab, having had my last infusion in December 2018 and my last major surgery during the summer of 2016.

September is also very significant as it marks exactly 14 years since I was initially diagnosed with stage 1 melanoma aged 18. I have now been living as a stage 4 patient for almost 9 years, with the end of next month marking the date I was told my diagnosis was Stage 4 cancer and I had to have two major operations to remove a lung tumour and brain tumour which had been growing inside me during my final year at University.

September is a month full of various triggers and cancer related anniversaries, when I was diagnosed in 2010 I thought I may not make it to 24 or 25, and now I’m 32! I woke up this morning, or in the middle of the night with it being 4am, still jet lagged from my long flight home. My work trip and travelling bubble has well and truly burst. For me, September is full of sadness and so many bad memories which have changed the course of my life forever. In this case i’m not sure if the memories fade or that time heals old wounds, but it really doesn’t feel like it today! My wounds are sore and as raw as ever right now.

I try my best not to think about the more distant future, but no matter how much time passes I still feel like I am looking down the barrel of a loaded gun every day, being away from London and my ‘normal’ life allows me to switch off a little, and there is a sense hope. Travelling home I started to think about my next long haul trip to America in 2020, and I am trying not to panic that something dreadful will happen between now and then which means I won’t actually go.

I am due a PET CT scan within the next month, and am awaiting a date for my MRI scan too, and will get the results at the start of November. I am starting to worry now that I know the date, particularly with the recent news about the hot spots of my last scan. Today I am full of misery and fear about what could be.

I’ve only been home five minutes but my mind has started experiencing certain triggers that are very distressing. This morning I discovered some hair in the shower plug hole and although this is totally normal I immediately had a flashback from when my hair started falling out about five years ago. September is a month when I think about my diagnosis and the impact it has on my life even more. I really hope October will be easier!