Real Life Stories

July 2003. Karen discovered a mole that had changed considerably in size and shape and was persuaded by my sister to get it checked out by her GP, who referred her to a specialist for further investigation. Within weeks a biopsy of the mole was undertaken and to our horror was diagnosed as skin cancer, Melanoma, the deadliest form of the disease.

Skin cancer? What's skin cancer? Our family, reasonably well educated asked. We honestly knew little to nothing about the disease. Only one place to go then. Google. Not a great deal of information, but enough to realise the severity of the diagnosis. An operation to remove the mole was undertaken in August 2003. Remove a mole, sounds simple hey? Nothing prepared me for the size of the hole that took its place. And nothing prepared Karen for how long it would take and how hard it would be to heal. Clearly the mole must have been deep. The surgeon was hopeful that they had removed it all, but what if they hadn't? What if it had spread? How will we know? Surely she will be scanned to see if the operation was successful? Surely she will have regular check ups and blood tests?

Post op checks were undertaken, about once a month. I accompanied her on one, which amazed me. No longer than 5 minutes, a quick feel of the lymph glands and a "how are you feeling Mrs. Clifford?" seemed to be enough to know whether the cancer had spread. No scans, no blood tests. Dismayed.

Right. Be positive; tell yourself the cancer hasn't spread. She will be fine, one of the lucky ones, she won't die, she's too good a person, she's loved too much and she will be missed too much. Dying is just not an option! Positivity is key, right?

May 2004. Karen started to feel unwell and following a routine blood test at her GP for her rheumatoid arthritis, Karen was alerted that her blood levels were not as they should be, to stop all medication immediately and was sent for an urgent liver scan.

I remember the wait in the hospital with my mum and dad, trying to think positive, but fearing the worst. What if the cancer had spread? What if there was nothing that could be done for her? What if she was going to die? How would she deal with such news? How would my dad deal with such news? How would I deal with such news? How would we tell my sister and brother?... We waited and waited for what seemed like an age, and then eventually we were called through. We stood in small room, adjacent to the waiting area. There was a scan attached to the light box on the wall. I daren't look at it. The doctor sat us down; "I'm afraid the cancer has spread to various parts of your liver Mrs. Clifford, and your spleen. Unfortunately, there is nothing we can do for you, you have only months to live". That's all I remember before I ran out the room, manically trying to find somewhere to break down. A MacMillan nurse followed me, the waiting room was full, the toilets were busy, and there was nowhere to go, to scream, to cry, to talk, just back to the room where our worst nightmare began.

Leaving the hospital, I held my mum's hand in silence. The corridors seemed endless, the drive home in rush hour traffic cruel. We arrived at my sisters, where the rest of our family were waiting to hear the outcome. Pain, sorrow, disbelief and deep, deep sadness engulfed us all. Our relationship with Google grew. The news that there was no treatment and certainly no cure was just unacceptable. We have to find a way to save her; there must be an answer somewhere. No matter how far we need to go, or how much it costs, we have to save her! With no answers and no hope medically in the UK, my mum and dad moved to Spain for several months where Karen undertook a series of alternative therapies with her naturopath who had been treating her previously for her rheumatoid arthritis. To everyone's amazement the tumours in her liver shrank considerably and we clung on to hope like never before.

July 13th 2004. Never believing that Karen would be here to celebrate her 60th birthday, our family hold tight the special memories of that day together in Marbella. She looked so well, so beautiful. Look at her photo, taken on this special day. It was hard to believe this courageous woman was fighting for her life.

December 2004. On a return flight home to spend Christmas with her family, Karen suddenly hemorrhaged. Happening again in January 2005 she was advised not travel again, the decision was made that she should rest at home with her family. For months Karen braved the disease that slowly and cruelly began to take hold. Following her 61st Birthday in July 2005, the gradual decline that noone should ever witness a loved one go through, began. Clinging on to life Karen spent her last Christmas with her family in 2005 and sadly died on New Years Eve with her family at her side.

Why Skcin - The Karen Clifford Skin Cancer Charity was born
Over the duration of Karen's battle with melanoma, our family had learnt a lot about skin cancer and malignant melanoma. However, this information wasn't readily available and was sourced by many means. Even after her death our knowledge grew and as we gradually built up our sources and respected contacts, we were utterly dismayed to uncover the alarming facts about the disease.
Many questions needed answering:

How can the most common cancer in the UK, be the one that is least spoken of?
Why is skin cancer rising faster than any other cancer in this country?
Why is malignant melanoma, the deadliest form of skin cancer, the most common cancer amongst young adults aged 15-34?
If 80% of all skin cancers are caused by over-exposure to UV, how can it be killing more people in the UK than Australia?
If 80% of all skin cancers are caused by over-exposure to UV, why the hell isn't anyone working towards PREVENTION of the disease?
If experts estimate that by 2024, MELANOMA will become the most common form of all major cancers, why on earth isn't there an organisation or charity dedicated to working toward culture change?
Suddenly, our mission became clear. We have to fill that void. If we can significantly raise the profile of skin cancer in the UK and if we can work toward the evident culture change required through education, then we can make a difference. We can save families and loved one's from going through the unnecessary heartbreak we have. We can turn Karen's death into a positive mission. We can save lives.
October 2006. Skcin; The Karen Clifford Skin Cancer Charity was born.

Karen's Relationship with the sun.
Karen enjoyed sunbathing in her younger years. A busy mum, with 3 children under 3 years of age in the early 70's, an hour or two in the summer months, lying out in the warm sunshine was a welcome break.
Annual holidays abroad also provided a welcome break and the chance to develop a good tan. Like the majority of us, Karen felt good with a tan, fake tans were dreadful until quite recently, so a natural tan from the sun or an occasional sunbed was the only option and one believed to be good for us.
Back then, the dangers of over-exposure to the sun, were not recognised or understood like they are today, so there seemed no harm in developing a good tan with little protection from sunscreens.

The fact is, Karen simply enjoyed the sun like many of us still do today. It wasn't until the 90's when she learned of the adverse aging effects that she decided to avoid over-exposure to UV by adequately protecting her skin as advised. Unfortunately though the damage had already been done. Casual, periodic sun exposure in the Summer months and on annual breaks abroad, without sufficient protection had caused irreparable damage to Karen's skin. Over the year's damaged cells beneath the skin's surface gradually mutated causing a melanoma to develop, eventually spreading to Karen's vital organs and resulting in her untimely and unfortunate death.

7 people now die every day in the UK from melanoma, with rates rising faster than any other cancer.

I knew, after 4 benign biopsies where I had been notified of the outcome by letter, that when the consultant's secretary calls asking when you can come in and discuss the results of your latest biopsy it's probably bad news. I prepared myself for being told I had skin cancer and assumed that I would be told it had been successfully cut out and I would need to be vigilant in the future.

Even after my appointment, where I was told I had Melanoma, and that they would need to take more skin from my cheek, I thought that would be the end of my journey. But when the consultant's parting words were "we have a long fight ahead of us", I felt the first wave of reality hit me. I met my husband in Reception and couldn't talk until we got to the lift. Even then I could only manage "it's cancer". Although during my appointment I'd been told about Lymph Node mapping, and that more skin needed to be taken, looking back I really didn't understand at that point how much this would impact my life.

I spent the day telling people and was surprised at the reactions I got. I felt like I was the one supporting people. I think the word "cancer" scares people more than anything else. Then when you say "it's ok, I'm ok", they somehow feel they have a right to say that you're lucky "it's all out" and worse of all "at least it's only skin cancer". Which to be fair, is a bit how I thought until my appointment with the surgeon four days later.

I sat in the room for what seemed like an age, and a Doctor came in and spoke to me about the procedure to remove more skin, A skin graft was discussed, and a skin flap rotation. Finally it was decided I need to come back and meet a different plastic surgeon. I joked with all the scarring I could have a new career as a pirate. Humour is my way of dealing with things. The size "2cm" was used and I assumed a piece the size of a £2 coin would be taken from my cheek. I was inwardly devastated. When did "more skin" turn into so much? Didn't they mean it was all out and because this was the third time it had grown back in the same place, but the first time it was malignant, it was all as a precaution surely?!?! I don't know why but up to that point I hadn't cried.

A few days later, the Skin Cancer nurse from the hospital called me. Then it all came out. Everything I felt I couldn't say to people that were close to me. Which was…this was my face. After childbirth had wrecked my body, and I'd given up myself to be "xyz's mum" I knew that at the end of the day I could look in the mirror and still see Kerri. Now she was going. My last reference to myself was going. And what would I tell my kids? They are all age six and under. How was I going to tell them that mummy was about to have another operation on my face? The tiny biopsy scar I had a few weeks prior had thrown my sensitive daughter into such a state that someone had cut me on purpose that I couldn't think how I was going to tell her it was going to happen again.

I didn't google to start with. I didn't feel I needed to. I was having another smallish piece of skin taken just to ensure it didn't happen again. I still had no idea about the devastating effects of Melanoma.
About a week later I had another appointment with a Plastic Surgeon. He felt my glands/lymph nodes and he went over my procedure again. Skin flap rotation was ruled out, so now it would be a 2cm radius skin graft, taken from somewhere "not hairy". Hang on. I can use humour Mr, but when it comes to my body, you most certainly can't. And where did a 4cm graft come into it? As much as I tried to look to the ceiling to stop myself crying I couldn't. The dam was released. I had a wedding coming up, it was the first time in a long time I would see distant family. I like looking nice and having a piece of pepperoni stuck on my face just couldn't fit into my day to day life.

I cried lots in that room. Actually I sobbed. Loudly. My surgeon could handle about two minutes of me before he quickly departed, leaving me with my Skin Cancer nurse. We spoke for at least an hour. She gave me a booklet on Melanoma. That night I read it from cover to cover. And read it again. And again. Oh wow. This is serious isn't it? It's a real proper cancer, and people die from it. Right…So how did it decide to pick me?

Then the googling started. I'm not a bear of little brain but how come I've totally missed the dangers of Melanoma? If one of the biggest contributing factors is sun damage in early life…how come I have not been informed of this considering I have three young children? Why hasn't someone told me? Then came my coping mechanism. I have to find out everything related to this disease.

And then came the anger. I was especially angry at other people - those mainly on social networking sites. I announced my skin cancer, and got many comments from people saying I'm a positive person. And then I notice people saying they have a cold, their child threw up, they've stubbed their toe. So what? Big deal.

Living with sun damaged skin - Basal Cell Carcinoma (Morphoeic)

My name is Debbie married with 3 children, from sunny Bournemouth this is my story so far with living with skin cancer. At the age of 41 I was diagnosed with my first Basal cell carcinoma (BCC) Morphoeic type which is a more aggressive form of skin cancer (non-melanoma) that needs to be spotted at the early stages to avoid further disfigurement, especially on the face!

It started with me having a small spot like cyst on the side of my nose which didn't heal after a few months and it just got bigger and formed a pearl like spot about 5mm in diameter. The first GP to have it checked said it was nothing to worry about, but after a couple of months with it, it was still not healing and was changing size and form and would often bleed. I had a second opinion from another GP and luckily he knew that it was a Basal Cell Carcinoma and referred me on to a specialist for skin cancer treatment where I had it surgically removed. This was not a pleasant experience and to add to this, I was told at the time, I also had to have a second one removed just below my cheek bone. As a result, I was back again to have this removed and unlike the first, it required a skin graft.

So that year for me was the beginning of my journey living with Basal Cell Carcinoma, caused by sun damage in my early years, meaning from now on to be extra careful with sun exposure. Knowing the damage had already started, I then had to have further surgery 2 years later to have a third removal on my eye lid. For this surgery, I had to go to the eye hospital and then a year later I had one removed from my back, then another from my stomach, leg and arms.

Already this year now aged 47; I've had to have a fourth removal, this time done by Moh's surgery, on the other side of my nose. This is still in the process of healing as I write my story. I also have to go back again in a couple of months time to have yet another removal, which will be my fifth! This one is on the right side under my eye as the biopsy came back positive. I'm also to have a biopsy taken from my knee and arm and so it continues…

With all this treatment and surgery, has meant there is scarring, especially on my face, which has affected my confidence and self-esteem as a result. It has become tiring explaining to others that it's been unfortunate for me having fun in the sun as a child and in my teen years with no knowledge that too much sun would cause skin cancer in my later years.

As a child, I had fair skin and hair, with green eyes and freckles on my nose, which my mum described as "I'd been kissed by the sun." Little did I know the sun was causing damage to my skin! Growing up in the seaside town of Blackpool and only living 5 minutes walk away from the beach, meant my early childhood memories were of spending lovely hot summers down the beach. We had a few holidays abroad and I also did many outdoor activities such as horse riding and bike riding etc.

With my birthday being on 21st June, I had many happy parties in the sunshine with excess sun exposure, protected only by low factor sun cream. Back then my parents just said, "mind you don't get sun burnt or get sunstroke."

Now as a parent of 3 and living in Bournemouth (another seaside town) my warning is not to get burnt or sunstroke and to keep in the shade between 11 and 3, as this is when the sun is at it's strongest. I would also suggest wearing high factor sun screen to avoid the risk of developing skin cancer in your later years.

Back in my teens, us girls on holidays abroad would apply a coconut oil to our skin, which at the time, was the very thing to get a deep tan. Looking back, I now cringe, as I know now it was more frying my skin than protecting it.

So this is the reason for my story, to hopefully educate others that the sun can do serious damage to your precious skin, so be warned and take Good Care of it.

The update to my story now aged 50 is that unfortunately 2 years ago I had to undergo yet more BCC removal Mohs surgery on the left side to my nose, then more surgery as BCC had returned on the upper of my right side of my nose this time it was close to my tear duct which left me with a droopy eye so I then had to to have further corrective surgery at the eye hospital.

Then recently last month I had to have a removal from back and then had to undergo yet again more biopsies on my face this time under my right eyelid and on the tip of my nose, and also a removal surgery on my shoulder was a BCC. The biopsy results came back for my nose and lower eyelid positive to BCC unfortunately for me again I've now to have more Moh's surgery again to my nose and lower eyelid. I've just now the anxious wait on my Moh's surgery appointment that could be any day soon. And so my never ending story goes on. I continue to hope sharing my story helps in education and prevention for others.

I was diagnosed with Melanoma in June 2013. The Melanoma started as a mole on my back that doctors initially brushed off, two dermatologists checked and said they were ok and then eventually a GP shaved it off (incompletely) at my insistence because the Mole had grown so large it was catching on clothing. My Melanoma was ulcerated, had a Breslow depth of 4.7mm and a Mitotic rate of 10 per 1sq/mm. My staging is Stage 2c at the moment.
I have had WLE from my Primary Melanoma, removal of a second Melanoma on my leg and subsequently further WLE of my back followed by SLNB in order to enable my access to a Clinical Trial.

I grew up in East Africa and Cyprus at a time when awareness of the sun and its potential to damage was not great. That said, I have no recollection of burning as a child and we returned to England before I was 12 years old. As a teenager I would relish the sunny summer days & the happy feeling from sunshine warming my skin. I have fair skin with freckles, other than two occasions I am not a sunbed user, I can remember a few times when I have burnt, but more often than not it has been a case of factor 30 until a tan develops & then factor 15 afterwards - needless to say I now use higher factors and avoid midday sun completely.

I have found my diagnosis quite a shock and have been quite frustrated with the Medical care differences and issues I have come across. I created a blog www.melanomarollercoaster.co.uk, initially to avoid spending my nights repeating the same information over and over to various members of my extended family & friends, but since starting the blog I hope that it can inform others like me a bit more about Melanoma & the rollercoaster of emotion and stress you suddenly become trapped on.

Like others in my condition I have had a very full and active life and have always enjoyed the outdoors, walking, riding, shooting etc.

As a child, I was fortunate enough to enjoy long summer holidays on the beach with my Grandparents and loved splashing around in the sea.(which sadly is where my surgeon thought I contracted the melanoma which has remained dormant until later life)

I have however never willingly sunbathed as with my auburn streaks, I would burn easily and then peel, so a tee shirt and hat were always essential garments that were worn both on the beach and in the sea.

MartinAs I grew up I was always the one in the shade who never took my top off and never relaxed on a sun bed, but busied myself and my children in rock pools or walking my dogs along the prom for something to do, so I can honestly say that I have never been a sun worshiper and now never will be.

My journey starts in May 2006 when at 49 I had a "Well Person check up" at my GP to be told that I was extremely fit and that I had many more miles on the clock with nothing to worry about apart from the possible obligatory argument with a bus etc so I went away with a grin on my face feeling a little smug.

In June as the weather warmed up, I noticed a mole on my forearm start to turn red, I had had the mole as long as I can remember but I knew that any change was something we are all warned about, so off to the GP I went, only to be turned away by a young locum with a patronising "it's nothing to worry about".

I returned to the GP in August and then again in September voicing further serious concerns to my GP and finally insisted on a second opinion which somewhat offended him, but he was good enough to refer me to a dermatologist at the Hospital who also said it was nothing serious, but as I was so adamant, would take a biopsy and let me know the results in a few days by post.

Well you've guest it, I had that early morning phone call we all dread which basically said "can you come to the hospital immediately and bring someone with you!"

(This proves the point I have always believed, which is that only you know what your body is telling you, never let a specialist, tell you different.)
So I am diagnosed with an aggressive Melanoma and immediate surgery is the only option which is where the real part of my journey began.

I had five operations to remove various lumps and bumps and then started my five year monitoring programme which involved regular visits to my Surgeon who is not only a brilliant man, but who's dower advice on not doing research on the internet has kept me from entering that downward spiral into depression that is so easy to do for anyone with my aggressive condition.

So whilst attending my penultimate "check up" after a long five years of wondering if I still had a future, yes you've guest it, he dropped the bombshell that it had spread into the lymph glands and I would have to have all 30 of them removed from my shoulder as soon as possible, which took place in April 2011.

After the surgery and putting up with a chest drain for 2 months, which was just a little off putting to some of my clients, I was asked to consider a twelve months drugs trial of regular chemotherapy of a new drug called Bevacizumab or "Avastin" which I started in July 2011 and which I have been on now for almost a year.

It has numerous side effects which I won't bore you with and it slowly saps away your energy over time, but we have stuck with it and we have just six weeks to go before it's over and I will hopefully receive the good news that it has all been for the best.

My journey will then continue with constant monitoring, I hope for many years to come, as I believe you never get over such a cruel and indiscriminate illness, you simply adapt to it. Its character building stuff and you meet some fantastic people along the way.

The things that really get to me about Skin Cancer are numerous but some of the worst are the faces of my loved ones each time I get another bit of bad news, the fact that you always look well on the outside when you are falling apart on the inside.

You see some terrible sights at the cancer clinic that seem to eventually recover, but skin cancer patients always seem to look great until they suddenly fade away.

Skin Cancer is an ever growing killer and it really irritates me that it is always overshadowed in favour of some other cancers, I really get incensed by "Race for Life" which I think is totally sexist as men suffer from breast cancer too and have a better chance of recovery than anyone that contracts a malignant melanoma!

The good that comes out of it though is that you meet some wonderful people who are strong in spirit if not in body who tirelessly put up with the inadequacies of NICE and the NHS in the hope that they may survive, they have a thirst for life that makes them very special as they appreciate every day as if it were their last; which makes them great to be around until they're g

As a child born in the 1950's it was considered healthy to be outside, we played out a lot, I don't remember sun cream, just calamine lotion if you went 'red'. As a young woman in my 20's it was fashionable to go on holiday abroad to places like Spain, and sunbathe. I went to Majorca with a friend once. On return everyone would say "You look really well with a tan". I also worked in Italy as a teacher for 3 years, Rome. and did spend time on the beach at weekends, again people would say how 'healthy' I looked with a tan. I don't think I sunbathed anymore than others at the time, less than many I know. My mum was English and my dad Italian - I had inherited my mothers pale skin! I did also use sunbeds in my early 30's, everyone did, again it was the fashion to go swimming or to aerobics and then have a sauna/sunbed. We were not aware of the dangers at that time.

I had a mole on my left thigh which was not painful but seemed to change in colour and spread at the edges, so, not wanting to make a fuss over something small, it was not until I went to see my G.P. for another unrelated reason that as I left I asked "Would you have a quick look at my leg please? Within minutes I was on the couch with my leg being examined by 2 G.P's. I had a call from the hospital the next day and was with the Consultant within 3 days. I was told that it was 99.9% certain, even before tests, that I had the most serious of skin cancers - malignant melanoma. It was removed there and then. This was in February 2004. The lesion did turn out to be malignant and I returned to hospital to have a further operation - to ensure a safe area around where the melanoma was removed.

I attended regular appointments for the next 3 years during this time I had cryosurgery on another small mole and had 2 others removed - none of which were malignant. I know that I have been very lucky. I would encourage everyone to go to the doctor if they are concerned about changes in a mole, the sooner the better.

2007 was a really memorable year for me - I turned 27, got engaged and was diagnosed with Melanoma.

I was sunburned in May 2007 - only 20 minutes in the back garden and I'd applied cream everywhere but my calves by accident as I was wearing short trousers. The burn blistered but once it had gone I thought nothing more about it. In September of that year I asked my husband's opinion when sitting in the bath one evening as a "halo" of lighter colour had appeared around my mole and the middle looked really dark. (It wasn't sore, didn't bleed or wasn't itchy). I remember watching GMTV when I was younger and Dr Hillary Jones talking about the dangers of sunburn and the changes to watch out for in moles. I went straight to my GP who referred me as an emergency case to my local hospital. He actually didn't mention that it may be malignant at the time although he told me at a later date that he suspected it but did not want to frighten me - I needed it to be checked out just in case. I took it all in my stride thinking there was nothing wrong and nearly didn't turn up for the mole removal in October - I'm terrified of needles. I'm so pleased I did. My results appointment came and once again I nearly didn't go - it couldn't possibly be anything bad, right? I was shocked when I was told my results. "Have you heard of malignant melanoma?" the Consultant asked "Well its not good is it?" was my reply! I was angry and confused and frightened all at the same time.

My mole was invasive but only to the depth of between 0.5 and 1mm. I was very lucky. Reading the different levels of prognosis on the cancer research website was a real wake-up call. Thank goodness I'd gone to get checked out when I did. I had a second operation in January 2008 to remove an additional 1cm boundary around the first scar to ensure all of the affected area had been removed. Thankfully this tissue contained no cancerous cells.
It really angers me when I see young girls sun worshiping. If only they knew the permanent damage they were doing.

I now have a 2 year old daughter and she already understands the dangers of the sun and knows not to go outside without cream and a hat.

I know I'm one of the lucky ones - I am checked by my cancer nurse specialist every 6 months and so far the cancer has showed no signs of returning. 2012 will be my 5 year celebration and I'm going to make the most of it and live life to the full.

I am a 45 year old textile artist, wife and mum of three children. In 2005 I ran my 1st marathon in Edinburgh in 3hrs 36 mins. In June 2008 I managed to achieve a personal ambition by running my 5th marathon in 3 hrs 13 mins which gave me an automatic championship entry to the London Marathon.

Shortly after this, following the removal of a mole on my back, I was diagnosed with Melanoma. This changed things for me, I was at my peak of fitness, ready to achieve even more personal bests, but actually didn't run seriously again for over a year.

After reading about Karen Clifford, I realised how so very lucky I had been and began to feel very, very fortunate. In December 2009 I decided to start running seriously again; take the opportunity of my Championship Place and raise funds and awareness for Skcin.

I didn't find the training easy and there were times whilst I was out battling against the elements that I wondered why and thought about giving it all up and not running the marathon. But remembering how lucky I am and knowing how different things could have been, always got me through my training and kept me going. I ran the 2010 London Marathon not to achieve a P.B, but because I could. Twenty two months after my diagnosis I'm alive, fit, running and able! I crossed the line with a finishing time of 3hr 23mins and felt elated. It wasn't my fastest, but it was my most exceptional and I raised £2000 for Skcin in the process.