I’ve had many skin issues over the years and I’d like to take you through my journey so far. What I’ve had to endure and through to the next part of my journey.
This article contains images and content that some readers may find disturbing. The images should not be used for self diagnosis and are only placed in this article to depict my own conditions.
The skin is a remarkable piece of the anatomy, it protects our bodies from all sorts, it evolves, stretches, heals and repairs itself, but sometimes it can falter. I’ve always had ‘delicate’ skin, ever since I was a small kid. I’ll always remember having eczema and having to have a bath in what I genuinely thought was milk. Turns out I wasn’t milk, it was a deep moisturiser concentrate to help heal my skin.
Over the years, as I got older, I accepted that I had sensitive skin. I’ve moisturised my skin every day and have done so for as long as I can remember, I moisturise my lips regularly and wear sun screen when required. As far as I’m concerned I’ve done everything I can to keep my skin soft and healthy. I was wrong.
Lumps and Bumps
In mid 2014 I discovered a lump on my top lip, I didnt think much of it, probably a spot, or an ingrown hair. I did what most people do, I squeezed it. Spot squeezed, job done and I carried on with my normal daily stuff. That was until the “spot” got bigger and more aggressive. It became very painful, very hard and started to scab over. I refused to go to the doctors for something like this, it was probably just a really bad ingrown hair. “it will go eventually”, 2 weeks later it was roughly the size of a 5p coin.
During a phone call to my Dad for a general chat, he informed me he had a cancerous lump on his nose, a Squamous Cell Carcinoma (SCC). He sent me a picture and the comparison to my Dads lump was identical to mine. The case of my dads SCC resulted in partial rhinoplasty, it was horiffic! the surgeons did a great job, but the photos where just horiffic and gut wrenching.
At this point I started to panic big time, I didn’t understand cancer and I certainly didn’t want it, so I cut the lump off my lip myself. It was extremely stupid and do not condone my actions at all. Over time, my self inflicted wound healed, however I was left with a scar, a deep scar.
My Dad on the other hand, had the best care he could have been given, his end result was fantastic and you would never have known he had an operation on his face. His SCC had been removed and that was the end of the panic for us both.
Is it an insect bit?
2 years later I felt a sharp sting on the side of my face. Again I didn’t think much of it, it turned into what looked like an ingrown hair, it was right on my beard line, so was highly probable. I didn’t learn from the last time and didn’t really associate what happened to my lip with what was happening to my face. So I squeezed the “ingrown hair”, nothing happened, nothing came out apart from blood. So I left it well alone and let it go on its own. Over the course of 2 weeks this “ingrown hair” had grown and grown to approximately the size of a 10p coin.
Time to seek medical advice
At this point it was time to seek medical advice. This thing on my face had exactly the same characteristics as the “spot” that was on my lip. A trip to the doctors diagnosed it as Folliculitis and a course of antibiotics to deal with it. It made sense, it was on my beard line and I’d not long ago had a shave. After 7 days of antibiotics this thing was still on my face.
It was literally eating away at the tissue on my cheek, it looked like you could see the layers of my skin. I was starting to look like something out of a horror movie. A further trip to the doctors revealed the same diagnosis, not much they can do but keep an eye on it.
3-4 months later this “thing” on my face dried up and disappeared, but left a whopping great, deep pitted scar on my face. What the hell was it!?
Is it the washing powder?
2 years on, I started getting a sore patch on the old ‘Jacobs Crackers‘. I have sensitive skin, so some washing powders cause me to itch. I thought it was the washing powder and that I’d maybe “scratched” myself a little too much. The same thing happened, a spot appeared, exactly the same characteristics, the exact same time to develop, grew to approx. A 5p coin size. A trip to the doctors, “Folliculitis”, antibiotics. Nothing happened, it eventually disappeared after 4-6 months of unbearable pain and discomfort. What the hell is happening to my skin!?
Is it a Tick?
2019, the start of the toughest year to come, for me. During a dog walk, I felt a bite feeling on the back of my leg. We were in long grass, so it could have been anything. Over a couple of weeks I developed a lump, it looked like a bite, so I just left it at that and thought it would go.
At the start of 2019 I lost my grandma, through a mix of old age, dementia and pneumonia. I’d spent a lot of time caring for her so it hit me quite hard. Clearing her flat etc. took my mind off this lump on my leg, although I was starting to struggle a little with it. Due to the size of the lump, I couldn’t bend down at work or do a great deal if I had trousers on. The trousers just pushed down on the lump and caused it to literally erupt.
Bad news hit home
During the time of my grandmas passing, my Dad, who lived in Kent, was travelling up to Hartlepool a lot to get my Grandmas affairs in order with my Uncle. Something wasn’t right, yes my Dad was grieving, but something was taking its toll on him and it was very noticeable. Shortly after my Grandmas funeral, by Dad was diagnosed with terminal cancer and was given and indication of 12 months survival. We, as a whole family were devastated.
Is it Cancer
Ok, My Grandma has passed away and its inevitable my Dad is going to follow suite, I cant quite cope with all of this, but my leg lesion is starting to hurt and cause some problems, its bleeding regularly and changing shape and getting much much larger, approx. the size of a £2 coin. A trip back to the doctors was desperately needed. I was told again, it was folliculitis, more antibiotics where given, but 7 days later, it got worse. It was bigger, more painful, more aggressive and weeping and oozing. Somethings seriously not right. After pushing and pushing my doctors, I eventually got referred to a skin specialist.
Specialist medical opinion
After a long wait, I eventually got seen by a “skin specialist”. My Dad has cancer, Im starting to convince myself it could be that, but looking at the positive, the other lesions disappeared on their own, with no further effects.
During my 10 minute consultation I was told he didn’t know what it was and wouldn’t know unless they remove it and do a biopsy on it. Within 1 hour, I had my consultation and the lump was surgically removed. It was huge! That was it, I was sent home. It was a horrible experience, with no information given and I had to wait 10 weeks for the results.
The result came back and was confirmed as a Squamous Cell Carcinoma with characteristics of a Keratoacanthoma. (this basically means, it looked like it isn’t cancer, but actually is. Squamous cells are the upper most inner cells within the epidermis.) Well that was it, I absolutely crapped myself, all I could think of was I’m going to die just like my Dad is.
The aftermath of my “minor surgery”
2 days after I got sent home from my minor surgery, something wasnt right, the pain was unbearable, I couldnt walk properly. 4 days later I went to A&E, my leg was swelling and looked like I had a calf muscle the size of the Hulk’s. After 4 more trips to A&E and the loss of feeling in my leg, I was admitted back into the Plastics unit where they would have to reopen the surgical site.
It turned out I had 2 abscesses in my leg and they needed to be drained. The wound site then had to be left open to heal from the inside out. Effectively leaving a whopping great hole in my leg for months while it healed. After a long recovery process my leg finally healed and left a large scar on my leg. Thank god all of that is over! Lets get on with life and make the most of the time we have left with my Dad.
April 2020 comes and sadly I lost my Dad to Cancer. Right at the peak of the COVID-19 pandemic, there was nothing we could do due to restrictions.
During a normal shave, I nicked skin above my top lip, it bled a lot, but eventually stopped. 2 days later my top lip, under my nose started swelling. It was developing what looked exactly like my previous lip, face and other lesions I’ve had. I’m definitely panicking, I’ve got cancer I know I have.
My dad just passed away from cancer. I had it in my leg previously. Now its in my face, and what if the other ones where the same thing. I can’t phone the doctors now it all has to be done online, due to the pandemic. I make an appointment and get told the same thing, over the phone… “folliculitis”. I know its not folliculitis. You don’t get 5 lesions with all the same characteristics. 4 of them be inflammation and the other be a form of skin cancer. Or so I thought anyway, but I’m not a doctor. So I will run the course and see where we go.
What’s happening to my face!?
2 months in and my top lip is severely swollen, with multiple small white lesions covering it. Its sore, red raw and very very uncomfortable. Eventually, after multiple visits to the doctor, I got referred to a specialist under the 2 weeks rule. An appointment was made for a sample to be taken from my lesions on my lip for biopsy. 3 weeks later the results are back. “Chronic inflammation with signs of epidermoid cysts”, that’s not the exact result but pretty much what it said.
Thank god for that. It wasn’t cancer. A huge sigh of relief for myself and Natalie. Who, although was probably more terrified than I was, never once showed it.
I can handle a lot of things emotionally, but this year has taken its toll on me mentally and emotionally. She’s my rock, when the world is on your shoulders, she just rolls her sleeves up and lifts it off.
I thought that was the end of the whole thing and that the inflammation would reside and the cyst things would just disappear. To my surprise that is exactly what started happening. Its now October and my lip swelling has resided and the cysts are much smaller. Its still uncomfortable and itchy but manageable.
I was then referred to the Dermatology department for further investigation as to what the cause or what the condition actually is. After a consultation with a dermatologist, the result was a bit of a let down… They didn’t know. Nothing was screaming out to them what it could be. That was until they noticed the previous 2 scars on my face. After plenty of questions and showing of photographs and telling them my whole ordeal over the last 6 years, the penny drops.
“We think it could be a condition called Ferguson-Smith Syndrome”. It could be what!? what could be!? It turns out the interest at the moment isn’t the condition with my lip, but more the conditions I have had previous to my lip.
Ferguson-Smith Syndrome (FSS) Is a rare, inherited disorder in which many fast-growing tumors that look like squamous cell skin cancer form on the nose, face, ears, arms, and legs. The tumors usually go away on their own, but often leave deep, pitted scars in the skin. FSS is also called Multiple Self-healing Squamous Epithelioma (MSSE).
Now it doesn’t take a genius to hear that and then think about all the skin issues you’ve had and put two and two together. It makes sense, it sound like that’s what I have, a slight sense of relief!
In order to carry out more tests, I had to have a small lump removed for biopsy from my head, I say small, 8mm punch biopsy, isn’t really small. However, its a small excision in the grand scheme of things with a nice tidy stitch up job to boot.
In order for the NHS to confirm diagnosis I have to go through a long process of genetic testing, more than likely more biopsies and prodding and poking. Am I worried? Yes, not that I have cancer or an underlying sinister problem, but worried for the unknown. The unknown of what type of testing will be done, what will they find, will they find anything at all?
The long haul
Ferguson-Smith syndrome is caused by mutations (changes) in the TGFBR1 gene. The aim is to carry out Genetic testing to create a genetic profile and then basically find the TGFBR1 gene and see if its mutated. Then treat accordingly.
Part of me is thinking if I have a mutated gene, then technically I’m a mutant, and may get enrolled into the X-Men, I might have a self healing gene like Wolverine, just not as good.
So, that’s where I am so far, I’m fed up of the skin conditions and not overly keen on travelling an hour each time I need to go to the RVI in Newcastle for testing, but I’m prepared to find answers and determined to do so. I will be adding to this article with a series of articles relating to my journey so please keep reading them.
Please do not take any details within this article for self diagnosis, its the worst thing you can do, google symptoms, look at pictures that look similar to your symptoms and decide what your condition is. You should always seek medical advice if you have any concerns over lumps or bumps, it doesn’t matter how small or insignificant you may think they are.