The Background
I am a fair skinned redhead and had a birthmark on my upper arm that I suspected had possibly changed. I wasn’t totally sure, but I decided to go to the doctor to get it checked. The GP said that she thought it looked fine, but would refer me to the specialists at the hospital due to my colouring. I was seen by 3 doctors at Guys Hospital in London, who all said that the birthmark looked fine so asked if students could also look at it. 4 students later, I was told that the afternoon clinic had been cancelled so they could remove my birthmark so I wouldn’t have to worry in the future. After a short surgery performed by dermatologists under local anesthetic I was sent away and informed that I would receive a letter confirming that everything was fine. I was due to travel to Barbados with a couple of friends and we had a lovely week enjoying the island. I avoided spending too much time in the sea due to having stitches in. On returning home I received the letter. It didn’t have the all-clear result as hoped, but instead gave me a date to return to the clinic. I knew this didn’t sound good so i was nervous turning up to the appointment. When I was called in, there was a doctor and two nurses in the room. Having spent a fair amount of time in the hospital with my Mum, I knew that this wasn’t a good sign – there were too many people in the room for a good result. I was told that I had Stage 2 Melanoma, which meant that my birthmark was cancerous and was 2.67mm in depth. I must admit, my world kind of fell apart. No words can describe the feeling and those who haven’t experienced a serious diagnosis can never, ever understand. It’s like time stops. Or you wish it would, and that maybe it would rewind and you could hear something else. It’s incredibly hard to deal with the emotion and to try to process the following conversations. There really is nothing like it. They informed me that they thought that they had all of the bad cells, but the rulings on this meant that they had to remove a clear 2cm around the original site. I was also offered the chance to have my axillary sentinel lymph node tested, but it was up to me. As the birthmark was only 3-4 inches away from my lymph nodes, I decided that it would be a good idea to know the whole story.
My First Surgery
In December 2010 I was scheduled for surgery at St Thomas’ Hospital. I needed another scan beforehand so I arrived at St. Thomas’ for the late morning appointment. The radiographer was quite surprised to see me as he thought he had called me to say that the scanner was out of order and I would need to go to Guys in the mid afternoon instead. He apologised profusely when he realised that he had gotten my number wrong and left a message on someone elses voicemail. I left the hospital in tears – there’s so much going on that any little change just tips you over the edge. It’s not really a big deal to have a scan rescheduled (and it’s just annoying not to be told in advance) but when you have something so serious to deal with, everything needs to run smoothly so that you can just keep putting one foot in front of the other. I had the rescheduled scan and it was time for the next installment.
In order to pinpoint the sentinel lymph node, the day before surgery I had to have a scan that allowed the team to mark where it was using scanners and a cobalt marker. They drew around a tool (so I had a capital F shape on my chest) and sent me home but I wasn’t allowed to wash it off. It was a very interesting shower to wash my hair, knowing that I would be admitted for 2 nights! I arrived early morning for the surgery and went through pre-op (with a very handsome Registrar) then went in to surgery under the expert care of a world-renowned Plastic Surgeon. Before I was put under anaesthetic the surgeon and his SHO came to decide how they would position my arm during the lymph node removal. It was decided that unfortunately a sling type device wouldn’t work and the SHO would have to hold my arm at the required angle for the whole operation. Poor lady! A couple of hours later I was out and in recovery. It turns out that general anaesthetic and I do not get on as I was horribly sick and groggy but after some more anti-sickness meds I was taken up to the ward. I was asked if I would like some food, bearing in mind that I had missed dinner time, but alas the sandwich that I requested never came. Fortunately I had some lovely friends come to visit me (and bring me food, including sour cream and chive crisps – yuck!) I was also introduced to my new buddy Ralph the Raff (giraffe) who had been purchased due to a previous hospital encounter with a small child looking incredibly happy with his toy giraffe. Due to the fact that I had what is termed an ‘V-Y’ incision, the medical staff kept coming in to check that the skin on my arm was still alive. I also had to try to sleep with a drain tube coming out of my underarm. It definitely wasn’t a restful night! I was offered morphine as a pain relief option and although I was tempted, mostly out of curiosity, I declined as I actually wasn’t in pain and I knew that it would likely extend my hospital stay. I was seen by the SHO who asked for my consent to use photographs of my armpit in educational material – apparently it was the first time that a particular piece of equipment had been used in such a way – my armpit is famous! (In certain circles…)
I was discharged and my Dad picked me up. He’s not good with medical stuff and his colour drained when he saw the ‘green blood’ on my arm (I had blue dye injected for the sentinel node surgery so it bled out bright green). I, on the other hand, thought it was hilarious and referred to it as alien blood. I did put up a good bit of a fuss when I was told that I had to wait for a porter and wheelchair to collect me. It was only surgery on my arm – my legs worked perfectly well and I was sure that there were others who needed help far more than I did! They wouldn’t be dissuaded, so I was wheeled out to the car park feeling like a right fraud. I was due to fly to Cambodia and Vietnam to join a tour group with my friend. She did a very good job of being Nurse Nancy (showing my age) and we had an amazing trip – Ralph enjoyed his first sojourn abroad. I decided that it was probably best to postpone the removal of my stitches until I returned from my travels.
One of the hard things to get used to was that the scar on my arm was quite purple, about 20cm long by 6cm wide and was pretty bumpy due to the fat that had been removed / disturbed (yuck!). I found for a very long time, years even, that people stared at my arm a lot, sometimes unable to take their eyes off it whether they were across the train carriage or talking to me. It made me very self-conscious, which really wasn’t what I needed with all of the other things going on in my life. I tried to hold my head up high and I found that I had a deeper understanding of what people with really visible deformities or disabilities have to experience. I’m not saying that a large scar is anything in comparison to what many people go out into the World with, but I now see how strong they are and how self-conscious they might feel. I started only ever having photographs from the right side so that the scar wouldn’t be visible. I didn’t want it to ‘ruin’ the documentation of an outfit I was wearing or an event I was at. I still shuffle people around when posing for a picture so that they are on the left of me.
More Surgery
I started seeing a psychologist who worked in the department in order to just talk through things. It actually really helped to say “it’s not fair” and for someone else to simply say “you’re right, it isn’t”. I was also told that to have wildly swinging emotions was normal, although it was quite draining to go from laughing to sobbing and back again in the space of a couple of minutes. In January 2011 I was called in for the results of the skin and lymph node biopsies. Unfortunately it was bad news – the skin they had removed from my arm was clear, but the lymph node showed positive for Melanoma. I was then scheduled for surgery to remove the rest in February 2011. I spoke to the surgeon again and he informed me that it was possible that I could lose feeling and movement in my hand due to the work in close proximity to the nerves. I was also told that I would need a month to recuperate – this is not what I wanted to hear, especially as I was a contractor! So I had the surgery and had been warned by the Registrar (even more attractive than the first one!) that I could potentially stay in for around 5 nights due to the drains that they would insert. The main thought going through my head was that I had only packed enough clothes for 4 nights! The Anaesthetist recognized me and asked how I had been after the first surgery. I explained how I’d been really sick so she gave me extra medication during surgery to combat this. My levels were a little low in recovery so I was given an oxygen mask for a few hours. That stuff is great! I felt fabulous, better than normal, and I was quite disappointed when they told me they were taking it away. I spent 2 nights in hospital, which were quite unsettled due to a couple of mentally ill patients in another room – one screamed like she was being murdered all night and the other was getting upset with the noise. I do understand that they were upset about being where they were but there didn’t seem to be anything that could be done to help them. It meant that none of us really got any sleep and the night shift all looked very pained. I spent my time willing my drains to stop and was mostly looked after by the same amazing staff as the first time. The second evening when a friend came to visit, it was after visiting hours so we had to leave the ward. I had a couple of drains running from my arm and chest wall that I was helpfully told by another patient was a lot easier to carry around in a carrier bag. I disappeared for a couple of hours and returned after the staff had changed shift. I was hastily introduced “here she is, she’s obviously ok as she’s been awol”. I was also touched that the nurses introduced Ralph to the night shift.The Registrar visited me each morning and was pleasantly surprised by how well I seemed – I don’t have time for being ill and wasting days in hospital! Although he was a very good reason to want to stay, I wanted to go home more.
Oddly at this time, the tv series “The Big C” had just started – the main character shared my name and disease. It was pretty odd for me to watch, although it’s clearly written by someone who knows the disease intimately as there were many parallels I could find (although I have never been able to watch the last series as I know it’s happening for me at some point but I can’t watch it beforehand). I spent the month at home and was quite surprised at how quickly it passed. I didn’t feel ill as such, but the surgery definitely took something out of me – and I don’t just mean the remaining 6 lymph nodes! One benefit of having the dissection is that the sweat glands were also removed, therefore deodorant now lasts me twice as long as I only need it on one side! I do occasionally forget, and by habit I might spray deodorant on my left armpit. I have confused myself a good few times by thinking that the deodorant must have run out, then laughed when I have realised that it hasn’t – I just can’t feel it due to the numbness I have in that area. I know this is going to sound daft but due to having a hollow in my armpit, the way that I move my arm can sometimes create the kind of fart noise that kids make with their hands – it’s such a minor thing but it really, really bugs me!
The All Clear…
In March, I was called in to get the latest news – I was all clear. To be totally honest, and maybe pessimistic, I didn’t get overjoyed. I figured that it was just a reprieve and that it would be back sometime. I had problems with fluid collecting in my chest wall so I had to have a significant amount manually drained for a while. I was taped up at one point, with a massive ‘plaster’ around my torso in order to stop the fluid ‘pocket’ (eew!) refilling. This actually did the trick and after about 5 days, my friend pulled off the taping and I seemed to be pretty much sorted. I have remained mostly numb in my upper arm due to the surgery, but I figure that it’s not that important to have feeling there and it’s a small price to pay. I was offered the chance to join the Avast-M trial and I was randomised on to the observation arm, which meant I got nothing apart from being monitored slightly more than I normally would be.
The ‘Good News’ didn’t Last For Long
I had been warned that I should expect bruises to turn up at all times due to the depth of the surgery and I did indeed get some a month or 2 later. I also got what looked like tiny bruises appear on my upper arm. I had a check up in July 2011 and showed these to my nurse. Her face changed and she said I needed to see the consultant. As she left the room, I remember thinking “oh crap, I hadn’t thought it could be that”. The consultant took a look and sent me for scans straight away. I knew things were looking bleak. Soon afterwards I had the result – I was diagnosed as having Stage 4 Metastatic Melanoma. My world just imploded. I couldn’t speak, I could barely hold myself together. That was it, my time was up. Nothing mattered any more. Why me? Why so young? It was all so unfair. Not everything happens for a reason, sometimes shit just happens. It was all a bit of a blur after that. The consultant obviously wanted to speak to me further but I didn’t take anything in really as I was trying my hardest not to collapse in a sobbing heap. My nurse spoke to me on a later date and said that maybe they had been a little hasty and that maybe I was in fact only Stage 3. Potayto-potahto. I was also told about this thing called the BRAF mutation and they suspected that I had it. I had my bloods sent to Germany to be tested and they came back positive. In simple terms, my body creates cells too quickly so therefore creates good ones along with bad ones at an accelerated rate. This is genetic and it gives a predisposition to getting one of a few types of cancer. So basically, I was screwed from birth (my paternal Grandfather died from Melanoma, yet my Father and Aunt seem to be unaffected).
I spoke with the psychologist a few more times and she explained to me that it was perfectly normal for me to disassociate my being from my body. Since that time I have always viewed my body as the vessel that carries around my presence and considered myself to have been lumbered with a duff one. I also found that every time I walked past a mirror, I would stop and stare at the 20+ tiny purple dots on the back of my arm that were killing me. I could actually see the cancer that was doing me in. Over a short space of time, my upper arm became quite lumpy and hot, with occasional shooting pains. This was due to the cancer cells reproducing and was another visual and physical reminder of what I was dealing with every day. I couldn’t get away from it, it was nearly always on my mind. Sometimes it was all I could think about and I would find myself on the verge of tears for a whole day and sometimes longer.
Why me?
I went through a prolonged phase of wondering why it couldn’t be some murderer that had the disease instead of me – surely I hadn’t done anything bad enough to warrant it? I began to feel very envious of my friends who had partners, were getting married, having babies and looking forward to the rest of their long lives (hopefully). There were times when I just wanted a guy to give me a big bear hug and tell me everything would be ok, regardless of whether we believed it or not. I didn’t want to do this all on my own, I know I have a good group of friends but I wanted someone who was there for me all of the time. I also didn’t want the decision about whether I wanted kids to be dictated to me, but as it is, I never got the chance to think what I wanted as it was now out of my hands (genetically mutated genes, taking medication that would produce mutant children, being single and having no idea how long I have left in existence meant that it just will never happen for me). I do still have these feelings, they will most likely never go away, but I just have to get on with it and make the best of the hand I have been dealt with. I started to think about how I didn’t want to work in an office for the rest of my life and nothing really seemed to have any point. I didn’t want to retrain or learn anything else, as who knew whether I would even have time to finish my studies let alone actually do anything with them! I also started a phase where I would do silly little childish things, just because I could. For example, I went window shopping around Harrods with a friend and I was given a flyer advertising something or other. After leaving the store I realised that I still had hold of it and there was a post box just in front of me. I decided that instead of throwing the flyer in the bin, as society expects, I didn’t want to conform as I wasn’t getting what I wanted so why should I? I posted the card into box and went on my way. I know it’s only a little thing, but it made me smile. I figure that it didn’t actually hurt anyone, so why not just do something silly?
In August 2011 I was referred to the Royal Marsden Hospital in Chelsea. Around this time I had several PET scans and the outlook was very bad. The cells were spreading quickly and I had them in my neck lymph nodes along with my lungs. This made it inoperable. I would suggest that anyone in this situation doesn’t look at the statistics for this disease. There are advances being made all of the time along with the fact that Melanoma is something that affects more older people, so the statistics are skewed based on the fact that there could ultimately be other reasons for death. The 10 months prognosis is shit scary! It still haunts me even though I know I have way surpassed that. I know that when it finally goes wrong again, it will go wrong quickly.
I Am Titanium 