11 Years

From the start.

Today marks exactly 11 years since I was initially diagnosed with malignant melanoma, the most deadly form of skin cancer. I’ve decide to start writing about my experiences with Stage IV melanoma for the following reasons.

1) Many people that I know have said that I should, because it might be therapeutic, and help me to be less angry and upset.

2) There really do not seem to be many other people out there doing the same thing.

3) I have never encountered a single person of around the same age who has the same type cancer as me, or even any form of cancer.

4) It would be great to use this opportunity to raise awareness of melanoma.

Where are all the young people?

On all of my multiple and frequent hospital trips over the past 11 years I seem to be at least 30 years younger than all the other patients. Where are all the young people? I have never written on a forum, or reached out to the community of people also suffering a similar fate. Until now I have stayed silent, perhaps just hoping that if I keep quiet and ignore it and just try to get on with my life, then somehow my problems will disappear. So far, this has not been successful. I know now, almost 11 years into this journey, and after nearly 6 years of being one of team Stage IV, that this will never happen, no matter how hard I try. Melanoma and I will be stuck together to the bitter end.  I am hoping that this will still be a LONG way off, but this hope is starting to fade as time goes on. This blog post recounts my 11 year history with Melanoma, the most deadly form of skin cancer, so apologies in advance for its length.

My name is Jo, I was born in on May 25 1987 and I grew up in Northamptonshire with my parents and my older sister. Later my parents separated and I am now the middle sibling, with two younger half-brothers. When I was born I was two and a half months premature, weighing just 2 pounds 12 ounces. At the time, I had no end of health problems ranging from jaundice to a hole in the heart, and also a benign lump on my head which was removed when I was a toddler. Despite the shaky start I fared pretty well up until I was 18, when my whole world changed forever.

After I had completed my A levels in the summer of 2005 I took my mum’s advice and had a suspicious looking mole on my neck removed. I do not remember worrying about it prior to that time, but looking back I am sure that there were warning signs that I had not noticed. It seemed to have grown larger, changed in colour and had become itchy. I have never been one to go out in the sun much, but I had a vague feeling when visiting the GP that all was not as it seemed when she asked some medical students to examine the mole and then quickly referred me to the hospital. I remember going to the GP on a Friday, and having the appointment to have the mole removed made for the following week. It seems obvious now how serious it was, but hindsight is always 20/20.

A week after first seeing the GP I had the mole on my neck removed. I vividly remember being on the operating table and the surgeon making small talk, asking me what I did etc. I told him that I worked at a cinema and was due to go to university in September.  Music was playing in the background and the Aretha Franklin song ‘Rescue Me’ came on the radio. I remember thinking how I was so desperate to get out of that room and have the surgery over and done with. Afterwards I went to a friend’s 18th birthday party.  My mum said that I should not go paint balling, which we had been planning for months, so I only went to the party afterwards at her house. I guess my mum was worried about anything hitting me in the neck and making things worse.

A month later I received a call from the hospital asking me to go in to discuss the results of the biopsy on my mole in a couple of weeks. My mum answered the phone and explained that as I was due to move to Edinburgh for University the next day, it would be really difficult for me to attend. They then asked if I could come to the hospital immediately!  I did not think much to it, as I assumed the only reason my appointment was brought forward was because was going away. The wait seemed like forever, the clinic was running very late. My memory becomes a bit of a blur after that. I remember being given some literature and leaflets on melanoma. I was told that the mole was around 1.5 mm thick and that I needed to come back to have a wide local excision as soon as possible to make sure they had removed all the traces of melanoma from my neck. I remember calling my dad as I walked out of the hospital crying. I had cancer. Typically, his car had broken down somewhere and he could not really hear me. He came over later that evening. Despite the drama I managed to pass my driving test the following morning and a few days I later flew to Edinburgh to start my university life. Admittedly, this wasn’t really the start I had been hoping for.

After six tearful days in Edinburgh I decided to come home and take a gap year.  The shock cancer diagnosis had thrown me and I couldn’t get my head around it. Edinburgh had been my insurance choice anyway so everything felt a little unstable. This was the first time that my cancer had forced me into a corner and changed the path that I thought was laid out for me. A few weeks after returning home, I had a wide local excision at Stoke Mandeville hospital. This left me with a huge scar on the right side of my neck and a dramatic story to tell. To this day, almost 11 years later, the scar is still visible, a constant reminder of where it all began. I had regular checkups (but no scans) at hospital every three months and was referred to an oncology team at the Churchill Hospital in Oxford.

The following September I moved to Kent to study at University. This was my original University choice as I had always wanted to study abroad as part of my degree, and I knew the course in Canterbury would give me that opportunity.

My impromptu gap year had not lived up to traditional expectations, it wasn’t exactly drinking cocktails out of buckets in Thailand or sky diving in New Zealand, but I did have the chance to start afresh. This was the first time that I had encountered new people who seemed curious about the huge scar I had on show. The next four years went by smoothly, with regular checkups at hospital every 3 – 6 months, alternating between a surgery team in Northampton and the Oncology team at the Churchill Hospital.

In my fourth and final year of studying I found a lump on the inner crease of my right elbow. Immediately concerned, I showed this to the registrar at the oncology appointment in March 2010. He did not seem particularly concerned, but he brought in my consultant oncologist for a second opinion. Together they discussed it, and they eventually suggested that it could be a calcium deposit of some sort. However, since it as it was uncomfortable and unsightly, they decided that even though there was no real cause for concern, I would be able to have it removed if I wanted.

Six months went by from visiting the team in Oxford to having the lump removed in Northampton that September. By this point I had graduated from University and moved to Windsor to start my first ‘proper’ job.  After I had the lump removed, I was told by the surgeon’s team that I would have to come back a week later. Alarm bells rang, but I naively thought it would simply be to do with having the stitches in my arm removed and checking that it was healing correctly.

A week on, the clinic was running late, so my mum went off to her dental appointment and we arranged to meet in town afterwards. I had had so many follow ups that had come to nothing over the previous 5 years that I guess I thought I knew what I was doing.

When I finally got called in for the appointment I was asked to change into a hospital gown. Fear immediately struck me. The surgeon came in followed by another lady (later my MacMillan nurse) and I knew something was amiss. My memory of this meeting is a somewhat hazy. I recall him telling me that he was very sorry, but the lump in my arm was melanoma. The surgeon then 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.  My Dad called as he was concerned that he had yet to hear from me. My next clear memory is being in the M&S cafe in Northampton with my Mum and Dad, having been booked an appointment booked with an Oncologist specialising in Skin Cancer in Northampton the following day.

At that meeting, I was asked if I had noticed any other lumps on my body. A short while before before I found one in my chest and two in awkward positions on my shoulder blades. I had to have a fully body examination to make sure there weren’t any other lumps I hadn’t noticed. The three subcutaneous lumps  were removed and confirmed as melanoma within a couple of weeks. Somehow, whilst waiting for the scan, I still managed to go on Holiday for a long weekend to Bahrain to visit a friend who was living there at the time. I had the CT scan the day I got back from holiday. My Dad picked me up from the airport to go straight to the hospital.  The scan showed a single lesion on the lower lobe of my left lung.  This was a devastating blow. I was out of remission after 5 years. They told me that the tumour could be removed by an operation, but that I needed to have an MRI on my head first.

Before the MRI scan had taken place I became very unwell whilst at work in Windsor. Almost out of nowhere my vision became blurred, I was vomiting everywhere and I had the most excruciating pain in my head. I could barely speak I was in so much pain. My colleagues drove me from Windsor back to my Dad’s house in Northampton that evening. The pain eventually subsided, but it was enough to know the episode spelled out the obvious. I got back to my Mum’s house in the early hours of a Monday, and spent the next couple of days in bed, drained from the episode before going to the MRI scan on the Wednesday, I was fortunate enough to have a follow up with my new oncologist the same afternoon so they managed to turn the result around very very quickly.

The scan showed melanoma was back with a vengeance. I had a single lesion in my brain which would need to be removed by surgery before the lung tumour could be tackled. The melanoma had spread and my life changed immeasurably from that day onward. I was also told this was a case of palliative care, I couldn’t be cured of cancer, but would be offered treatment to help manage my symptoms and hopefully extend my life for as long as possible. I was 23 years old. I remember telling my Nan I would go and visit her after the hospital, but given the news I went home with my Mum and my Dad went over to my Nan’s to speak with her. The following day I went back to Windsor with my Dad.  We carried all of my stuff out of the room that I had only moved into two months previously.  We then went into my work to tell them that I needed brain surgery and probably wouldn’t be back for a while, as these things take a long time to recover from. There was of course a chance that I would never be able to return to work.

The life altering news happened in October 2010, and my sister was away in Australia travelling at the time. She was not due home until the following March, but ended up back in Northampton one week later at the start of November. I was given steroids to reduce the swelling on my brain and had to take these for a number of weeks before I could have the operation. It was surprising how much worse I felt when I knew there was something wrong with me.

In the weeks leading up to the bad news, I had been telling my manager in Windsor  how I kept getting headaches and seeing spots. I had actually looked up my symptoms just weeks before and had  joked ‘I’ve googled it and apparently I have a brain tumour’. I joked about it, but I was right!  I thought back to how unwell I had been feeling during the last few months of University; again, hindsight is 20/20. My self-diagnosis via the internet turned out to be very accurate.

I was admitted to John Radcliffe Hospital in Oxford on November 23 2010, and had a craniotomy operation to remove the brain tumour the following day.  Miraculously I was released three days later, which seemed insane at the time, and still does now. I was told that because of the location of the surgery, when I awoke from the operation I would have some temporary loss of peripheral vision for a few days.  My family knew that I was back to my old self when I started getting stressed when people didn’t stand directly in front of me, out of my line of vision where I couldn’t see them.

What followed was weeks of recovery at home with multiple appointments with Macmillan nurses, both at home and at the hospital in Northampton. Christmas came and went and I was admitted to Glenfield Hospital in Leicester on January 17 2011 for my lung surgery. It was successful, but recovery seemed to be much slower than it had been for my brain operation.

Time passed and I recovered, moving to London to share a house with a school friend in May 2011 and heading back to work 4 days a week in Windsor. I had regular appointments and apart from having some small cancerous subcutaneous lumps removed with local anaesthetic every few weeks, I had no major evidence of the disease for about 3 years.

I was now living in London, in possession of a Freedom pass, a Blue Badge, and weekly payments of Disability Living Allowance. These were all very helpful, but also constant reminders of no longer being ‘normal’.  I have since learnt that for someone in my condition, a period of three years without another tumour appearing is very rare indeed.  On paper I was not really expected to have survived the surgeries without the melanoma coming back with increasing rapidity.  All the statistics were against me.  I think the average survival for Stage IV cancer is about 18 months, so I am going against the grain in most senses.

Time passed and in October 2013 I began a full time job. I hadn’t managed to sustain full time status in Windsor, or in my first job in London as brain surgery recovery and travelling was too much.  Finally feeling able to work full time was a huge achievement, a mini fist bump to myself if you like!  As time passed, fewer subcutaneous lumps were appearing, so it seemed that I was a few steps ahead of melanoma at last.

A few weeks after starting my full time job I found a fairly large disk shaped lump in my leg whilst showering. I immediately contacted the oncology department and this was quickly removed.  I remember shedding a few tears explaining to my manager, who I hardly knew at the time, why I was getting so upset about a day surgery procedure. Melanoma was back, but really of course, it had never been away in the first place.

I had a regular CT scan appointment scheduled for December 23 2013. Out of nowhere, during the scan just after the contrast was injected I experienced a major anaphylactic shock. My memory of this is short but vivid, I actually thought my time was up. My throat was closing up and my whole body went into shock. I had to be given emergency oxygen to help me breathe. Thank god for quick thinking hospital staff!  What was supposed to be a 20 minutes scan turned into over an hour of hospital staff trying to stabilise my condition.  It was only then that they went outside to my family and explained to them that I had had a really bad and rare reaction to the scan drugs, but was now stable. I was in and out of consciousness and admitted to ICU. Merry Christmas indeed! It turned out that my body no longer tolerated CT contrast.  Who knew serve reactions could just develop like that?

In spite of the drama, I was informed that my scan results (what they managed to get before they had to stop to process due to my emergency) were clear! Or so I thought.

I had another scan, this time without the contrast in May 2014, and again I was told it was clear.  However, I had been feeling unwell for a couple of months. I had not been able to eat much, so on my birthday at the end of the month, I took myself to a walk-in GP.  She suspected appendicitis, and sent me with a letter to the A&E department St George’s Hospital in Tooting the same day.  I stayed there for ten days!  This was not an ideal way to spend my 27th Birthday. Throughout the week that followed, I was subjected to more tests than I can remember, and courses of various different pain killers. If I had been given a pound every time a doctor or someone on the ward told me they had ruled out appendicitis I could have paid off my university tuition fees ten times over.

Eventually the hospital in London got my ‘clear’ scan results from Leicester and had a look at them, explaining that they thought there might actually be something, probably a polyp, in my bowel causing me problems. Although I kept mentioning my medical history, no-one from oncology came to visit me for a week, and the whole process was painfully slow. I had an appointment with my own Oncologist a few days later and upon discussion with various people it was decided that I should be discharged. The idea was to follow up with the melanoma team in Leicester where my care took place, they knew my case and I felt more confortable that way.

The day after being discharged from St Georges Hospital in Tooting and before my follow up appointment with my Oncologist in Leicester I was in so much pain that I had to be driven to A&E in the middle of the night. I was frantically calling my dad, unable to get hold of him until 5am. He arrived at around 6am, by which time I was screaming in pain. I had to be given morphine, which I then suffered a slight allergic reaction to. I felt my throat closing up, similar to how I had felt during my CT scan before Christmas. The same happened with tramadol. Suddenly out of nowhere I seemed to have become hyper sensitive to both of these pain medications. Needless to say I have not had either since, it’s Fentanyl that gets me through now. The following day I had emergency surgery, via a laparoscopy, to investigate and possibly remove part of my small bowel. The scars are very small considering. My oncologist came to see me before the surgery and basically suggested there would be three possible outcomes:

  • The surgeon would go in, take a look and be able to remove the area causing me pain. Other treatments may follow, but the main focus was to get the operation over and done with and then I would be able to recover.
  • The surgeon would go in, take a look and find that there was more cancer present. This would mean the surgery would be performed slightly differently and there was a chance that I would have to have a stoma bag fitted as a permanent measure for the rest of my life. This could mean saying goodbye to going to the toilet properly ever again. I had a long chat with the stoma nurse prior to the operation.
  • The surgeon would go in, take a look and find that there was widespread cancer.  So much in fact that he wouldn’t be able to remove any of it, in which case they would close me up again, make me comfortable, and that would be all they could do. It was a possibility that I had gone too far down the line, to the point of no return.

Although I had had various conversations such as these over the years, this seemed to be suddenly much more serious. I honestly thought that that was it. I had been fortunate up to this point, but I began to feel like a ticking time bomb.

The operation took place on June 6 2014 and fortunately in was the first of the above three possible outcomes. It took a fair few days for me to be able to eat or drink again normally.

Shortly after I recovered from the operation, I went on pre booked holidays to Amsterdam, Greece, and Brussels before starting some systemic treatment in September 2014.  I did not want to miss out on any opportunity to experience travel, but I had to juggle my time with hospital appointments and work.

Owing to various rules in place at the time by the medical body NICE, I had to have a cycle of dacarbazine chemotherapy in order to qualify for having a course of the new immunotherapy drug ipilimumab. Dacarbazine is ‘old school’ chemotherapy that has been around since the 1970’s. Sadly my mutation of melanoma does not respond very well to this type of treatment, so it was literally a case of taking the drug in order to tick the right boxes.

Having completed the mandatory course of chemotherapy, I was then able to have  a course of four cycles Ipilimumab. Ipilimumab is administered intravenously in the chemotherapy unit. I was due to have a course of four cycles. The drug can take several months to activate your own immune system and become effective.

After I had only been given two of these doses, I started to experience similar pain to the kind I had before the surgery in my bowel area. A subsequent scan revealed that the cancer was yet again growing in my bowel area and urgent action was needed.  The faster acting oral chemotherapy drug Vemurafenib was now prescribed to reduce any tumours in my system.  Despite a couple of hospitalization periods, and my eyebrows and hair falling out (which then regrew into an afro) this drug kept me alive and well for almost eighteen months. During this time I went on a major health kick and started going to the gym regularly. I was able to have a relatively ‘normal’ life even if I did have to wear a wig to work.  Although there may not necessarily be any solid medical proof that lifestyle changes can help in these kind of dire situations, it certainly made me feel better for trying to do my bit.  Even if it had the smallest impact, it would be worth it.

In October 2015,  I ran a half marathon to raise money for Cancer Research with some work colleagues. A mass email went around recruiting people and it was something I couldn’t ignore.  Five of us ran the race together and in the end we raised over £5000, an achievement of which I am very proud.  I finished the marathon in 2 hours 36 minutes and 28 seconds. Not bad for someone who is not at all sporty in any way, and hates running. Being a Stage IV cancer patient did not really come into it.

My second bowel surgery took place in May 2016, just before my 29th Birthday. Why I always seem to end up in hospital around my birthday and Christmas I don’t know, I guess that I must be even more unlucky than I thought.

My second bowel surgery took place after experiencing a great deal of pain and discomfort and being signed off work for a couple of weeks with what appeared to be a virus. A CT scan was ordered for me. I was due to go back into hospital for the results, but got a call later that day after returning home with my Dad. I was at a friend’s parents’ house at the time having a cup of tea, explaining that I hoped the virus would pass…the person on the other end of the phone, whose name I can’t even remember now, explained that something had come up on my scan and it looked like I had intussusception. This  happens when one part of the intestine folds in to another section of intestine, telescoping in on itself and causing pain and obstruction. This was the same problem that had occurred when I had my bowel surgery back in 2014, only this time it seemed to be in my upper bowel rather than lower bowel.

I was reassured that it looked as though this had nothing to do with melanoma whatsoever and was intact sheer bad luck. I was asked to return to hospital that evening with the view to having surgery the following day. Of course, it did turn out to be melanoma, it seems ridiculous to me that anyone could come to the conclusion that it was anything else. Yet again I felt as if I am always the one drawing the short straw. Of course it would be cancer related. I have lost count of the number of times a medical professional has told me that the pain I’ve been experiencing, or a situation I’ve found myself in, is not related to melanoma when actually it turns out to be exactly that.

My Mum was on a flight back from holiday at the time so I was frantically trying to get in touch with her. I took the trip back to hospital and waited until 1am for a bed. I had to force my Dad to go home earlier in the evening as I knew it would be a long wait to get a bed, and that he would need to be there for a long shift the next day. My parents arrived early in the morning, followed by my sister that evening. My symptoms got worse, I was vomiting green bile and not even able to hold down water. I went into surgery that evening.  Once again I was fortunate, and the operation was a success. I was visited in hospital by my family every day, and also by one of my lovely school friends. I was discharged the evening before my birthday. Although very happy to be out of hospital I spent the majority of the day in bed or on the sofa in my pyjamas.

After what felt like a ridiculously long period of recovery and temporarily starting back on the vemurafenib tablets again, it was decided that I should have a PET CT scan in order to determine if there was any active disease present in my system, which would then have an impact on the treatment plan moving forward. For this, I had to attend a different hospital in Leicester, and an appointment was made for me to have the scan on a Saturday in the middle of June. I went alone, as I had had a similar scan a few years before and I did not foresee any problems.  It turned out to be one of the most stressful days I have ever experienced.

I arrived in more than enough time from London and followed my instructions about food and water intake to the letter. I was then presented with a mammoth issue whilst in the scanning unit; the radiographer could not find a vein in my arm in which to inject the dye.  After two feeble attempts (the room being freezing cold did not help) he disappeared to make a phone call. When he returned, he told me that as they were not able to cannulate me that day I would not be able to have the scan and would need to come back another day. I flipped and broke down in tears. I could not control my emotions, it was not my fault the room was freezing and I have awful veins. I had mentioned this on the phone when my appointment was booked in. I have not been that upset in such a long time, they had to take me into a side room to calm me down and would not let me leave until I had relaxed. I had travelled so far on my own for something I thought was routine, only for it to be a total waste of my time and a £60 train ticket. I would have had a more productive day if I had stayed in bed.  After about an hour I left the unit.  I called my mum on the way out, and burst into tears again. A lovely stranger came to comfort me as I was so distressed.  I will not forget her.  She gave me a huge hug, and was full of kind words about how stressful hospitals can be, which made me feel less like an idiot for having a tantrum at the hospital entrance. Even thinking about it now makes me upset.

My scan was rearranged for the Thursday of the following week, with a nurse from the oncology team at my usual hospital coming to cannulate me before the scan, to ensure that I could have it done. This time my mum was with me to give moral support. I was very glad to get the process over and done with and felt I could finally relax. I just had to make sure that I avoided children and pregnant women for the next 12 hours; no problem.

The scan revealed ‘hot’ areas indicating cancerous activity in the bowel and left pelvis. This was not entirely unexpected, but it was a huge blow to hear that the cancer was active in more than one site. Changing treatment was now my only option, however I was reassured by my Oncologist that compared to some other cancer drugs, this new treatment of Pembrozilumab is fairly clean. One of the major side effects is loose bowel movements, but hair loss and skin rashes are far less common. I am about to undergo cycle number 4. Each infusion takes 30 minutes and requires a trip to the hospital every three weeks. So far I have not fared too badly in terms of side effects, but it has been exhausting to say the least.

Since I stopped taking the oral drug my eyebrows and hair have started to grow back and take on a normal texture. It is incredible what the human body can do. I am hoping that my hair will continue to grow and that eventually I will be able to go without a wig again. That would quite literally be a dream come true. If I could have my old hair back by next May when I turn 30 then I would never want a birthday present again – LIFE MADE!

Pembrolizumab, like Ipilimumab, is an immunotherapy drug. This type of treatment stimulates the body’s immune system to fight cancer cells. I will be due a scan at the end of September so I will find out then if it is working.

One of the most important things I have discovered over recent weeks is the confirmation from my oncologist that I am an anomaly. I think I always knew this in the back of my mind, but it felt nice that someone has confirmed this to me. I have never seen any other patients my age and given the limited life expectancy of Stage IV melanoma patients, my current run of 6 years (and hopefully a lot longer) is incredible and not very common at all. I’ve defied expectations. Maybe that should go on my headstone?

I had brain and lung metastases removed and following that no major evidence of disease for almost three years. This is unusual. Perhaps my age is a factor, who knows, but putting it simply, if he were to plot a graph of his patients and their responses to treatment I would be off the chart. In a way it makes me feel smugly proud of what my body can do! I am unique. My Oncologist said he had not expected me to be alive so long after my initial surgery in 2010. On paper I should have been dead years ago. I turned to my parents and told them that I knew I was special! But my body keeps fighting, and I am not prepared to give up easily.  This premature child will not be beaten! I might not have been the most academic, or the best at PE at school, but it appears that my body can fight back like no other. Time has also been on my side.  Treatment for melanoma has advanced so much in the last few years.  Drugs that I am taking now were not widely available even as recently as two years ago. God bless the NHS. If this had happened to me at an earlier point in my life there would not have been any treatment available. I am currently just trying to keep my head above water, hoping and praying my scan results at the end of September are positive. I really want to get old and grey and have wrinkles.

I know that I am lucky right now, but what bothers me most is the impact on my life, how I look, and what I can and cannot do. I feel like an outsider in a room full of people. Do they know I am wearing a wig and have tattooed eyebrows? Now I have to make an effort to hide the signs and symptoms that cancer is having on my body. Not just the physical scars from operations, but everything else which comes as a side effect of life-extending treatment.

No matter how wonderful family and friends are and how understanding they try to be, no one really knows what it is like unless they are in the same situation. Only recently I met other cancer patients at a Look Good Feel Better workshop. There were ladies of all ages present, it was hard but I am glad I went. It reminded me that there are other people going through similar journeys to mine which is somewhat comforting.

Previously I felt as if the regular appointments slotted into my life, an inconvenience that could be overcome. Nowadays cancer rules my life and I try to fit everything around it. I am not in control of anything. Cancer will never leave me, we will always be together until the day I die. It will most likely be the reason I die. I am dying of cancer. I just have to learn to deal with it. The goalposts have changed so much since I have been going through this that some of my goals and hopes for the future are no longer attainable. I feel like I don’t have a future. I won’t get a new job, or a promotion at work, i won’t buy a house (25 year mortgages – Ha!), I don’t see myself falling in love, getting married, or having a family of my own. I don’t see myself having a long time left under the circumstances. I just hope I make it to 30. My current mood means I want to scream at anyone who complains about day to day life, people who moan about buying a house, and how its ‘oh so stressful’ – if only life were that simple. I wish i could whinge about that! I want to shake them and tell them they don’t know how lucky they are to be making plans for a future. I am living on borrowed time and my situation could completely change at any moment.

So back to the question at the start, where are all the young people? I haven’t found many, but perhaps I’ve not been looking hard enough. My fear is that possibly they have not been as lucky as I have been so far, and that perhaps medical advances came too late for them. Or perhaps they have not felt the need to openly write about their feelings, preferring to deal with things in private. I realise that no individual journey through the cancer maze is ever the same, however I have found that it can be somewhat possible to live like a typical 20 something. Yes, perhaps I have needed to alter the parameters of what is considered ‘normal’ as time has gone on, but I am alive, and right now I am living, and I hope there are other people like me doing the same.

23 thoughts on “11 Years

  1. I’m so proud of you for sharing your story. It’s such a huge part of your life and it deserves to be heard. I hope it helps to write it all down for people to read. I’m constantly in awe of how you are able to come back from the darkest emotional places known to man with a smile and a joke. You’ve got so much more life to live and even though your body makes it near impossible, I know you’ll find a way. I love you Jo! I look forward to reading your next post. Xx

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  2. Jo, thank you for sharing your story. I’m going to put a link to your blog on my blog to follow up my post of few days ago, which I’m guessing is how you found my blog. Do check out Lois’ blog also”…on pets and prisoners…” if you haven’t already (you can find the link on my blog). She was diagnosed with stage 4 melanoma about a year ago. She’s older than you, but perhaps your shared experience will be helpful for both of you. God bless you as you go forward.

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      • Thanks Jo. I’m never sure about the word “interesting.” 🙂 For that matter, I’m not sure which post you were referring to… As for the earlier post, as someone who knows far more than I do about melanoma, please let me know if anything I wrote struck you wrong. I wanted to caution people about the disease, especially after learning Lois’ story — she had some skin lesions removed, but they didn’t even require treatment. She religiously was checked for further outward signs, but no one told her it could be growing inside. By the time they diagnosed it, like you, it was stage 4. As someone who was diagnosed when you were so young, I’m guessing the cause is unclear — unlike so many people who worship the sun or tanning salons. Whew! Long response. I’m wordy tonight!

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      • Hi Belinda, I think it’s great that other people are writing about it, nice to know I’m not alone. I agree about cautioning people, not everyone is aware of how devastating it can be further down the line. X

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  3. Hi Jo–Belinda referred me b/c she wrote about my melanoma a few days ago. I, too, have Stage IV Metastasized Melanoma. I received my diagnosis Nov 2016–9 years after I had a malignant melanoma removed from my back. I can so relate to the surgeries you have had. I am quite a bit older than you so, there you go–older than you. You are a trooper and I wish you such good luck–your story is amazing. My immunotherapy is kickin’ ass, so to speak. I have to have it for almost 2 years, but if it will keep the cancer away, then I will do it. We are strong–young or old–we can do this.

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  4. Hi Jo,
    I have stage 4 melanoma, am 26 and living in the UK (Bristol). I feel exactly the same as you! Everyone is old! I found about trekstock recently and they told me about your blog. On their website they say skin cancer is the most common cancer in young adults, however they gave hardly any personal stories of people with skin cancer and no information about skin cancer yet. Apparently not many people with skin cancer approach them. All very strange.
    I’m on pembro too – all a bit of a hassle isn’t it!
    Add me on Facebook if you like, I’m happy to keep in touch.
    Great blog by the way! Thank you for doing it.
    Suze

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  5. Jo, you are without a doubt the most resilient person I know. Keep on doing what you’re doing!
    I have shared your blog with friends as I think some of them would be interested in getting in touch xxx

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  6. I know this is coming late, and I saw that you just followed my blog – but just wanted to let you know that I am 30 and was diagnosed with stage IIIB melanoma almost 9 months ago. I had a “spitz nevus” removed from my back 6 years ago…. but we found out that it was misdiagnosed and was melanoma all along. Anyway, I had my 2nd and last Ipi infusion right before thanksgiving. I had to stop because of raging fevers and possibly liver inflammation. I have been having side effects still though since then. I am getting my 9 month scans today. Basically I just wanted to reiterate that you are not alone, that there are lots of people in their 20’s and 30’s going through similair stuff. You just have to look harder on the internet. I wouldn’t have known otherwise because everyone was at least 30 years older than me whenever im in the waiting room for my oncologist or getting infusions. Hang in there and best of luck!

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  7. […] The recent change in the weather and the feeling of summer in the air has made me think more about the importance of wearing sun cream. Its important to highlight just how dangerous sun exposure or the desire for a tan could be. Although over-exposure to the sun is not how I got Melanoma, it would be silly for me not to start talking about it, as its something I think about frequently. In some cases situations such as mine could be avoided or prevented altogether, and I don’t want any one else to go through an ordeal such as the one I’ve been going through for the past 11 years. […]

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