When we first told Jon that we were going to start a group/support network in his name, he gave it his blessing and said he had noticed the absence of awareness programmes around melanoma. As time went on and we started to build the website, we asked Jon if he would write his story. He started it almost immediately.
He was a lovely, kind man, and dealt with this illness with bravery beyond all comprehension. JON HERRON 25.4.78 – 21.5.08.
Firstly, let me point out that I have never been a sun-worshipper, always preferring to stay covered up or out of the sun (I got sunburnt shoulders in Tenerife at 12 years old and never felt that a tan was important enough to risk repeating that). I have never been on a sunbed in my entire life. I have never even used fake tan. Living in Northern Ireland, over-exposure to strong sunlight was never gong to be much of a danger either. However, I’ve always had relatively fair skin (not pale) and I have always had quite a few moles around my body, particularly on the torso and arms.
In April 2002, now living in England and working for a defence contractor, I was attending a course and found myself sitting at a table every day, wearing a short-sleeved shirt. A mole located on my upper left arm, to the back, was causing some light irritation. It was leading me to spend a lot of my time on the course, scratching lightly, but unable to see it without the use of a mirror. In the hotel room at the end of one day, I examined it in the mirror and realised that it had changed from the last time I’d seen it. It was approximately 6-7mm across, but it was flaking and had become raised and a little discoloured. Needless to say, it concerned me. I made a phone call to my parents and asked their advice. They instructed me to get it checked out, but when I finished the course, I put it out of my mind and went back to normal working life. After all, cancer is something that happens to somebody else…isn’t it?
A few weeks later, I took a trip back to Northern Ireland to visit my family and, whilst there, my mother made an appointment for me to be seen by the family GP, regarding the mole that I was ignoring. I argued that it was nothing to worry about but eventually succumbed and went to the appointment. The GP examined the mole, stated that she felt it was nothing serious, but insisted I be referred to a dermatologist anyway, “just to be sure”. I was in a dermatologist’s office 2 days later. She examined the mole and explained that although she didn’t believe it was anything worth worrying about, she would be happiest if it was excised for biopsy. So, the mole was removed under local anaesthetic and sent for tests. I returned to work in England, being told that I would be informed of any results. In fact, as they knew my mother well, her having worked in the same hospital for many years, they offered to contact her with any news.
Approximately 10 days passed and then I received a call from my mother. She informed me that the dermatologist’s secretary had been in touch and told her that I would have to return to Northern Ireland for a ‘wider excision’ of the area, as the mole had indeed turned out to be a malignant melanoma. This didn’t really sink in properly, as I’d not heard much about malignant melanoma. I assumed that they had it well under control and that this procedure would take care of everything. After all, I was being told that it would be a day-case, under local anaesthetic.
At the beginning of May 2002, I attended a clinic at the Ulster Hospital in Belfast, where a plastic surgeon was to remove a section of my upper arm, approximately 5 inches long, 2.5 inches wide and 1 inch deep. All whilst I was lay there, wide awake, talking to the doctors and nurses and watching what they were doing! After an hour and a half or so, I left the hospital, with my new wound sutured and dressed. I thought it was all over. They would test the tissue they had removed to ensure that the cancer cells had not spread beyond its boundaries. I was to be later informed that they were satisfied with the mass of tissue that they had removed. Now, I was to report to the plastic surgery team at the Ulster Hospital every 3 months for the next 5 years, to keep an eye on things.
These visits entailed a consultant or registrar examining me, in particular my left under-arm, as this was, they told me, where I was most likely to encounter a recurrence or an infection. So I was instructed to examine my own under-arm regularly and feel for small, round lumps. I made several visits to the hospital in Belfast, over the next 2 years, but coinciding the appointments with visits home from England was becoming quite difficult. So, I requested to be referred to a plastic surgeon nearer to where I lived, in Blackpool at the time. My follow-up care was transferred to a plastics team based in Royal Preston Hospital.
I attended the clinic every 3 months for checks. Each visit became quite routine, with me being examined for any lumps and being asked if I had noticed any changes particularly in any moles. I even had my fiancée of that time (we met a few weeks after the initial surgery, in England) checking my back for me, as I could not see those moles.
Almost 4 years had passed since the primary melanoma was diagnosed and dissected. I had become quite content that I was in the clear. The plastics consultant was even willing to extend my visits to every 6 months, rather than 3.
Then, one Sunday morning, standing in the shower of my home, as I washed I felt a lump at the root of my neck, where it joins my left shoulder. Needless to say, I panicked. It was a lump approximately the size of my thumb-tip, protruding a couple of millimetres above the surrounding tissue. It was quite firm and not particularly mobile. I got out of the shower and looked at myself in the mirror. The lump was visible in the light, when I tilted my head to the side. I stressed that whole day, convincing myself that it was serious, even believing that there was a dull ache accompanying the lump. I’m not sure if this was psychological or not. My fiancée attempted to convince me that it would turn out to be nothing, but suggested that I get an appointment with my GP first thing the following morning.
I arrived at work that Monday morning still very worried about the lump, so I called the GP’s office as soon as the receptionists were answering and I asked for an emergency appointment. I was to be seen by one of the practice partners (not my regular GP) at 10am. I set off from work and arrived at the GP’s office and when called to my appointment, was treated with less than a great deal of respect by the doctor (whose name shall not be used). She was sharp and uninterested in me as a patient. She looked at the lump and proclaimed that it was a swollen lymph gland, probably related to the anti-biotics that I was taking for a minor skin irritation on the side of my jaw. She informed me that if the swelling of the gland had not gone down in “3 or 4 weeks” to come back. She didn’t even bother to refer to be medical history, which was available to her on the computer sat directly in front of her at her desk! She didn’t even consider the fact that I was clearly worried and upset.
Not being the sort of person to create a fuss, or to argue with a doctor about a diagnosis, I left the surgery and returned to work. Over the course of the rest of that day, I even began to settle my nerves with the thought, “She’s an experienced doctor. She must know what she’s talking about.” The rest of that week, I resolved to just keep an eye on things, but there was to be no reduction in the lump.
The following week, on the Monday morning, I was back in the shower. Whilst washing, I felt two large lumps in my left armpit, similar in size and shape to the one on my neck. Again, I panicked. I knew straight away that I had to see my GP. When I got to work I thought that perhaps the lumps are the same as the one in my neck and should be given time. But anxiety forced me to call the GP’s surgery and ask for another emergency appointment, this time only being willing to see the doctor that I had always seen and trusted. I was given an appointment at lunchtime and when I arrived, he got me to remove my shirt and give me an examination. As soon as he felt the lumps, he said that he wanted to refer me to be seen by the plastic surgery consultant as soon as possible, citing that it was due to my state of worry more than anything else. He didn’t want me to spend several days in a panic. By the time I had left his office and returned to work, he called me to tell me that the plastics team would see me at Royal Preston Hospital on the Thursday morning, outside of clinic time.
I attended the appointment and was examined by a registrar, who then called upon the senior consultant to have a look. The consultant examined me and then stated that a “fine-needle aspiration” was required of each of the three lumps. This basically involved a syringe being used to draw fluid from each lump, that could then be sent to pathology for testing. After the fluid was withdrawn, a melanoma nurse spoke to me alone, explaining what a positive result would mean to me, including the treatment etc. I left the hospital a little shaken and decided that I would take the following day off work and go back to Northern Ireland for some family support. I returned on the Sunday and attended work on Monday. However, the anxiety got the better of me and I suffered breathing difficulty that night, having to go to A&E at Blackpool Victoria Hospital, where they diagnosed that I was under stress and should not return to work until after I’d received the results on the Thursday.
The Thursday came and I attended the clinic. When I was called, I went to the examination room and the senior plastic surgery consultant walked in, accompanied by a nurse. He looked very solemn and started by saying, “I’m sorry to say that the results came back and don’t look too good.” My heart sank. He then went on to explain that all 3 lumps had been found to be malignant lymph glands. He explained that the course of action was now to operate: a “large” operation, a neck and axilla dissection, in which the lymph glands of my neck and armpit would be removed. The CT scan to assess the full spread would be the following Wednesday, with me being admitted to hospital on the Friday and in for surgery first thing on the Saturday morning. Everything was very sudden and quite devastating.
I left the hospital and went home in something of a state, picking my fiancée up from work on the way. At home we pondered what best to do and concluded that going to my family in Northern Ireland would be best, as support was needed. I didn’t sleep at all that night and we flew from Liverpool to Belfast in the early hours of Friday morning. My family were devastated. They didn’t know what to say to comfort me: but what do you say?!
The weekend was a lot easier in the comfort of the home that I had grown up in since the age of 4, surrounded by the people who cared most about me. Visitors arrived constantly over the weekend to see me and it wasn’t until we (my parents, my fiancée and I) prepared to leave to return to Lancashire on the Tuesday, that the reality of the situation returned to me.
I had my CT scan on the Wednesday morning in Royal Preston Hospital and spent that afternoon in the town centre, buying things I would need for my hospital stay, dressing gown etc. I’d never even spent so much as a night in a hospital bed, so I just didn’t know what to expect.
Friday came around pretty quickly and we set off for the hospital. There, I provided the nurses with various requested samples (you know the sort of thing: bloods, urine) and one of the consultant’s registrars briefed my family and I on the surgery and had me sign the consent forms. Later that afternoon, the consultant himself visited me by my bed and explained that he would be performing the surgery himself and expected approximately “a few hours” on each site. He also explained the risks associated, including nerve damage, permanent numbness, etc. Then I was told that I would be in hospital for at least 10 days.
My family made a teary exit that evening and I prepared myself for a difficult night. I was to be Nil By Mouth from midnight, but I refused any food, due to nervousness. In the morning I was amongst the first in the ward to wake. I asked a nurse where I could shower, knowing it would be the last chance of a proper wash for several days. When I returned to my bed, a nurse arrived and provided me with my gown and a description of what we’re about to do. After I had changed into the gown, another nurse came to my bed and told me to bring a pillow and follow her. We walked through the ward and down to the operating theatre preparation room, where I lay on a table with my pillow. The anaesthesiologist began checking my hands for a suitable vein, whilst a nurse informed me that she would be looking after me for the duration of the surgery. A venflon was inserted into the back of my hand and the anaesthesiologist inserted a large syringe full of clear fluid and said that I would be asleep very quickly. I tried at this point to imagine my family being there when I would wake up. The fluid was rapidly injected, the syringe quickly discarded and another syringe injected just as rapidly. I didn’t even have time to think and I was completely unconscious. The clock on the wall had read 8.45am at my last glance.
I began to slowly regain consciousness, hearing familiar voices but not being able to see any faces. I think the first coherent sentence I could make out was that of my mother, informing me that the football club I support so fervently had won that day. The only reply I could muster was, “Good”. Then I could hear someone explaining that it was 7.45pm!! The surgery itself had taken 9 and a half hours, with a break for lunch. I struggled to see, attempting to open my eyes, but obviously still heavily anaesthetised. Fortunately there was no pain, but I was wearing an oxygen mask and could hear various machines whirring and beeping around me. In one hand, they had placed a large button that was for me to self-administer intra-venous morphine, if the pain got too much. It was obviously regulated by the machine to prevent me from giving myself too large a dose, but I pressed the button a lot regardless, in fear of the pain actually kicking in.
My family realised that there would be little sense from me that night, and so decided they should leave and return in the morning, when the consultant was due to visit me and check on my progress. I vaguely recall my mother leaning over me and kissing me head as she left.
At approximately 10.30pm, I began to regain consciousness and opened my eyes properly. I used my right arm to pull my wall-mounted TV set down in front of me and turned it on, just in time for the start of Match of the Day (blokes and priorities, eh?!). Whilst watching it, a nurse came to check on me and was shocked at the sight of me watching the TV. When she had gone I lifted the phone that is included on the TV console and dialled my home phone number, whereupon my fiancée answered and was shocked to hear my voice. She was even more shocked when I told her I was watching MotD. Shortly after the phone call, I fell asleep and didn’t wake til the morning, when a nurse came to my bedside and checked on my drains (it transpired that I had 4, 2 from my underarm and 2 from my neck). Little did I realise that these drains would prove to be one of my biggest problems over the next 9 days and would determine when I would be discharged.
That Sunday morning, my family arrived to see me fully awake and smiling. The pain still hadn’t arrived, probably a combination of the anaesthetic and the morphine. I was able to remove the oxygen mask and talk to them. I hadn’t seen what I looked like yet, but I could tell that my neck was particularly swollen. I was catheterised and the bag hung by the side of the bed. I felt some of my dignity had gone.
As I lay talking to my family, the curtain around my bad was pulled back to reveal the consultant, who looked at me with a slight amount of surprise, stating that he couldn’t believe that I was the patient he had operated on the day previously. He checked that there was no obvious damage to the nerves of my face or shoulder and was pleased with how things had gone. When he left, my father took a photograph of me waving to the camera and smiling, to be sent to family back in Northern Ireland, to show that I was ok. The family back home had a laugh, not knowing that by that evening I would be pleading with my family to help me with the pain, having had the morphine taken away. I was to require a dose of Oromorph (orally administered liquid morphine – an acquired taste!) and a sleeping tablet every night I was in the hospital.
On the Monday morning, I was allowed, with the help of a nurse, to walk to the toilets and urinate. I’d had the catheter removed on the Sunday evening, but couldn’t manage to urinate whilst lying down. Being stubborn, I had demanded being allowed to go to the toilets. My drain bottles were placed in a plastic carrier bag to make it easier for me to move around. However, the toilets in the ward were to prove a severe problem, seldom being cleaned properly by the contractors – the cubicles were often to be found with urine all over the floors, not the most sanitary conditions for setting the bag down!
Several problems were encountered during the 9 days, such as one of the drains leaking. The yellowy lymph fluid could occasionally be found seeping from the drain hole in my left side, leading me to have to request that a nurse change the surrounding dressing. This made me feel like a nuisance to the already over-worked staff.
After 10 days in the hospital, the drains appeared to be withdrawing very little fluid. I was informed by a nurse that the consultant would be there to see me and would probably send me home that day. I felt like cheering. I couldn’t wait to go home and have a wash, as I’d been cleaning myself with cleansing wipes for the best part of 9 days!! I could get some good food and sleep in my own bed again.
The consultant examined me and was content that I could be sent home that day, so a nurse began to clean me up, removing my drains and changing various dressings. By the time my parents and fiancée arrived, I was sat on my bed, ready to go.
My father drove us back to my house and left me to have a bath, assisted by my fiancée. I don’t think I’ve ever been so relieved to have a bath in my life!
That evening, I sat in my living room, unable to sit comfortably without pain. Going to bed was a relief, although I still had to lie with my head and arm elevated and had to sleep on my back. This was to continue for a number of weeks, even after the dressings were completely removed to reveal the extent of the scarring. Initially this was a bit shocking to me, although being quite fine lines, they were still very red. I felt for weeks that everywhere I went, people were looking at me and making judgements. Who wouldn’t when faced with a shaven-headed Ulsterman, bearing a large scar up his neck? Sadly, the appearance of the scars was to worsen, with them stretching and part of one becoming a “kheloid”, which is slightly lumpy. The mobility of my head is also affected, with me unable to turn my head as freely as before, due to the tightness of the scar tissue inside my neck.
I was to be given a couple of months for recovery from the surgery and then I was to be referred to an oncologist. So, I spent the months, effectively sitting at home, alone. I watched a lot of TV, DVDs and played Xbox to pass the time. When I felt a bit healthier, I took advantage of the summer weather and began taking myself out of the house and going for walks around the area of Blackpool in which I lived. I was conscious enough to cover any exposed skin with total sunblock, particularly the scars. As far as any social life goes, I didn’t have one. I had the company of my fiancée in the evenings when she returned from work, but my illness was causing problems in the relationship, as my recovery interfered heavily with her desire for a social life.
By mid-summer, I received a letter from the Christie Hospital, to inform me that the oncologist who would be taking me under his care needed to see me to discuss further treatment. That oncologist was Dr Paul Lorigan. As I still felt unable to drive properly, I asked my father to take me to the appointment, where I met Dr Lorigan for the first time. Here, he explained that there was little in the way of treatment following surgery for malignant melanoma, with the exception of an adjuvant treatment called Interferon, which it was hoped would reduce the chances of the melanoma recurring. It seemed like an all or nothing approach, so I agreed to participate in what was effectively a trial. It would be selected by computer whether I would receive 1 month of daily intra-venous high-dose Interferon alone, or the 1 month treatment followed by 11 months of subcutaneous injections 3 times a week. I ended up being selected for the 12 month plan. I didn’t have a problem with that, as I deemed it better to get the full course.
Within a couple of weeks, I was back at the Christie Hospital, to begin my treatment. I had all the side effects explained to me. They were to be strong flu-like symptoms and tiredness. I signed the consent forms and was fitted with a PICC (Peripherally-Inserted Central Catheter) Line, that was a half-metre of rubber piping passed through a vein my arm, the end of which rested slightly above my heart. The open end of this line was then sutured to my forearm and would remain in place for the full month. It was uncomfortable and a little unsightly. Extra special care was taken each day for the end of the line to be cleaned, before and after treatment.
Unfortunately, where the treatment was concerned, it was supposed to be “first-come, first-served” at the chemotherapy suite of the Christie. However, as my treatment was daily and took a little over an hour (by comparison, some patients were in the suite for up to 12 hours, fortnightly), attempts were made to accommodate me. Add to that the fact that my family were bringing me almost 60 miles from Blackpool each day, attempting to be at the ward by 10am. The journey there was usually long enough, due to traffic, but the journey back could prove to be worse, particularly on a Monday, when the week’s supply of Interferon could only be ordered from the pharmacy after my bloods had been checked.
The first treatment didn’t eventually happen until quite late that first day, with so many patients and the Interferon taking so long to arrive and be prepared. Eventually, my name was called and I was taken into a side room, where my line was cleaned and flushed with saline (to ensure there was no blockage) and a saline drip was attached to my line. I was given 2 paracetomol for the flu-like symptoms that were expected. I was then lead to a large, comfortable armchair in the chemo suite, where my family were allowed to join me. The saline drip was to take 15 minutes, after which the nurse returned and replaced that with the Interferon. This was to take closer to an hour. I sat reading the paper and watching out of the corner of my eye, the level of the drip reducing. This was all very unusual to me. I couldn’t help but look around at some of the other unfortunate souls in the room and came to the conclusion that there weren’t many as young as me (I was 28), if any at all. When the Interferon had passed, the nurse replaced the drip with another saline solution.
When the second saline drip had passed, I was taken to the side room again and the drip removed, line cleaned and dressed. The staff were very thorough and professional and made me feel quite at ease, considering the circumstances.
After that first treatment, I returned to Blackpool, commenting in the car as to how tolerable it had been and that I had no nasty side-effects, apart from a strange metallic taste in my mouth. However, after being home for approximately an hour or so, I decided I was tired and would go to bed for a while. I had been in bed for no more than 20 minutes and began to feel cold, like I’d never felt before. I pulled the bedclothes round me in a desperate attempt to warm up, to no avail. My shivering began to scare me. It was uncontrollable. It appeared the flu-like symptoms were striking with a vengeance! A couple of hours later, the symptoms, which included some nausea and headache, began to subside and I was able to fall asleep.
The next morning I woke, wondering how I was going to go through that trauma every day! And to make matters a little worse, when I had my shower, the waterproof dressing on my arm wrinkled and became quite itchy and uncomfortable. Thankfully the dressing was changed each day, but it was to stay on each weekend.
Every day, I aimed to leave Blackpool by no later than 8.30am, in an effort to reach the Christie by 10am. My father drove every day, sometimes my mother accompanying us. My fiancée only made the trip with me on the first day. My parents stayed at our home for each of the weeks that I was being treated, returning to Northern Ireland each weekend, in an attempt to give us a little space and privacy. However, my fiancée was more interested in going out with her friends on the Friday and Saturday nights and this continued to put added pressure on our already fragile relationship. Whilst she was out, I would go to bed around 9pm, feeling quite exhausted. It was becoming apparent that my condition was turning me into something of a burden to the woman who had accepted my proposal of marriage just several months earlier.
I learned that Mondays were my worst days for symptoms, possibly because my body had gotten used to the break during the weekend. Fortunately, the symptoms were not so severe during the other days of the week and were more common during the afternoons, leaving me feeling considerably better during the evenings. However, on one occasion, I found myself getting a headache whilst returning home from hospital one evening. By the time I reached my house, it was obviously more than a headache. I could barely stand and felt weak and very nauseous. It seemed I was experiencing my first migraine. I struggled upstairs and slumped across the bed, pleading with myself to avoid throwing up. My mother came to check on me and suggested I get undressed and into bed and get some sleep and she’d check on me later. At around 9pm, my mother returned to see if I was better. I felt only slightly improved, so she recommended I have something to eat and brought me some toast, which seemed to ease the discomfort. I asked where my fiancée was, as she hadn’t been to check on me and was told that she had gone out with some friends to watch the football in a bar in Blackpool! So much for being cared for!!
As the IV treatment came to an end, my relationship with my fiancée was being tested to the extreme, with her even making my parents feel unwelcome in our home. There were frequent arguments, causing me some stress. I’m still unsure as to whether or not this will have played any part in later developments with my illness. My parents returned to Northern Ireland again on the day of my last treatment, although I was to travel back to the Christie Hospital on the following Monday, to have my bloods checked and to begin the next phase, the subcutaneous injections. With the line removed on the last day of IV treatment, I felt I was capable of driving again.
On that Monday morning, I got in my car at about 8.15am, to get to my appointment, alone. After I had given bloods, I was eventually seen by a doctor who explained the use of the Interferon “pen” (similar to those used by diabetics). One of the very friendly nurses from the unit then brought my first 4 weeks supply of Interferon, each week’s supply being a box, containing one pen and several replaceable needles and anti-septic wipes. These boxes were to be stored in my fridge at home. As I was to inject myself 3 times a week, on Monday, Wednesday and Friday, I was told I should perform the first injection there in the examination room, under the supervision of the nurse. The suggestion was to pinch some fat tissue from my stomach or leg, between my finger and thumb, and then quickly inject the small needle. The pen was set to inject just the right dose, by twisting the plunger a certain number of “clicks”. Then it was a simple case of withdrawing the needle and disposing of it in a sharps bin that had been supplied.
I had chosen beforehand to use my thigh as it seemed a less painful area to inject. So, I sat in front of the nurse, trousers round my ankles, and injected the Interferon into my thigh. It wasn’t a particularly pleasant experience, but not as traumatic as it could have been. I left the hospital and returned home to place my 4 week supply in my fridge. I was still required to return to the hospital every Monday for the next few weeks, for my bloods to be checked. Apparently, there was a risk of liver functions being affected, but this never became an issue.
The side-effects of injecting the Interferon were still flu-like, but on a much smaller scale than with the IV dose. It seemed that now it was more tiredness and thirst that were an issue. I continued to inject myself 3 times a week, with my fiancée insisting that I do it alone as she didn’t want to see me injecting myself. This attitude continued to add to our problems and I felt very alone in my fight with this disease. I certainly didn’t feel as though I had a source of loving support. In fact, I began to feel that I would be better off alone, without the arguments and stress.
By mid-July, I felt that I was strong enough to return to work. I would then continue with the subcutaneous injections at home at night. At first, working whilst on the treatment was reasonably tolerable. I saw the Occupational Health doctor regularly and explained that tiredness was my biggest issue, along with a need to drink a lot of water. There were also a couple of incidents where I missed a day at work as I hadn’t slept at all after one of my injections.
At one point, I felt a small lump in my neck, around the site of the surgery. I was extremely scared that it was a recurrence of the disease. I sought assurance from my GP, who again referred me to the plastics team, who attempted another fine needle aspiration but found it very difficult as the small lump was very mobile. The results came back inconclusive, so I was referred to have a fine needle aspiration under ultra-sound. I was feeling very much on my own by this stage and even when I looked to my fiancée for reassurances, even just a hug, I ran into a brick wall. It was clear by this stage that she wanted out of the relationship, that caring for me was too much for someone who felt she had a life of her own to live. Sadly, she was beginning to resent me.
When I attended the appointment for the ultra-sound, I received my first good news for a long time, that there was nothing of any substance that could be seen. The lump was simply fibrous tissue, the result of scar tissue within my neck. I was so relieved that I could’ve danced a jig…and I’m no dancer, I can assure you!
Unfortunately, however, there were other problems becoming obvious with my physiology.
Click on the link to continue reading Jon’s Story.