Stories added by members from Melanoma Community Ireland
“Once diagnosed with melanoma it’s forever imprinted on your soul. You don’t just go back to normal. You are changed forever”
“Nobody knows what’s around the corner but it’s how we deal with adversity and these challenges life throws at us that makes us stronger.”
I’m a firm believer that everything happens for a reason whether it’s a lesson to learn from or something to help us grow as a person …
At a very young age of 19 I stupidly over did it on the sunbeds which resulted in a melanoma on a mole on my leg it just so happens I was going to the doctor same day I noticed it the colour and shape looked different than the others I was in hospital the next day got it removed I also had to get a sentinel node biopsy at the top of leg luckily it came back clear !!!!
Second time 10 years later it was a mole on my finger at the time I was constantly getting my gel nails done every 2 weeks under a UV lamp! They now claim led lamps to be a safer option to have your nails done …. I had to to get a lot of skin on my finger removed and skin graphs luckily again the sentinel node biopsy came back clear
Up till a few months ago I was doing well having check-ups ever 6 months. I started to get shooting pains in the side of left breast same side as previous melanomas the pain wasn’t regular but I had a gut feeling I should get it checked. I’m glad I listened to my gut.
The doctor referred me for an ultrasound on breast they also checked nodes. All clear until 2 wks later after the all clear they called back and asked me to come in to recheck nodes. Resulting in finding melanoma in one of my the lymph nodes I was so scared I genuinely thought this was it for me I feared the worst that it had spread everywhere and I was going to die soon.
My mind went that far so that anything other than this outcome I could cope with.
I Had a pet scan it hadn’t spread. Then removed all lymph nodes in my left arm melanoma was only in one node. I’m now getting monitored very regularly with scans which I’m waiting on results from CT scan right now all the worries and anxiety comes back so just taking each day at a time.
…because of all this I’ve changed as a person I suppose that’s what challenges are all about. It has made me not take my health or life for granted. Someone told me what you put into your body either heals you or harms you and I think is very true I eat so much healthier now and I love exercise for me it makes me feel physically and mentally strong.
Nobody knows what’s around the corner but it’s how we deal with adversity and these challenges life throws at us that makes us stronger.
Six years ago, at 29 I, (rather inconveniently) hit a massive bump in the road.
A big, hard, round bump that decided to poke its way out the right side of my neck.
The Melanoma diagnosis and more over the prognosis that followed was shocking and viciously grim, I was stage 4 before I even knew what it meant. It was a cosmic size nuclear bomb that landed smack bang in the middle of my otherwise perfect world.
I had a major neck dissection surgery initially, and some smaller follow up surgeries to try and eliminate any further sources. Unfortunately it had already spread quite considerably and a couple of weeks later (after much back and forth with my newly introduced medical community), I had to start Dacarbazine chemotherapy. A drug that generally has a minimal enough chance of impacting Melanoma, but in my instance had a huge effect. Over three and a half years I had a number of stints in full remission and then a number of relapses. Each time there was remission, I’d push to come off the drug, I’d get six months of freedom and then would relapse. Living in a world where you are constantly waiting for the upheaval a fresh attack would bring is tough and hard for others to understand.
Then last April I moved to Immunotherapy. It was a walk in the park versus the countless rounds of chemotherapy.
Ipilimumab has kept me clear for the last 12 months. An amazing result.
Over those years, I tried every treatment possible to help get better. From conventional to alternative, to all out random and nonsensical. I’ve bed hopped from Reiki masters to Nutritionists to Acupuncture to Oxygen tanks. Chopped so many Organic vegetables I think I could win an Olympic medal. And put so many lotions and potions into my mouth that I’m pretty sure my taste buds gave up and died years ago.
I’ve been really lucky. Lots of drugs and love and some other good stuff, brought me my very own mini miracle and I’ve now been fully clear and in remission for over 2 years.
I had multiple surgeries that were life changing, and uncountable chemotherapies that were brutal. Instantaneously becoming a pale nauseous, walking bag of radioactive waste is no fun, and hours spent in soulless hospital waiting rooms climbing walls will put years on anyone.
However the worst side effect of all, is trying to live with the motherf*cker, all the implications it brings, and still believe that it’ll be worth it and come good in the end.
When I was first diagnosed I thralled the internet to find a me!…Simply someone who had been dealt a Stage 4, slim chance prognosis but had come out the other side. Honestly, it might sound ridiculous but I had extreme cancer envy of anyone with anything less than that grim a prognosis. I needed to find someone who, by any means possible lived through it, despite many, that were far more knowledgeable on such things, patting my shoulder and telling me it was impossible.
So I’m posting here it to hopefully help anyone in a similar situation now. To show that six years on it’s possible, even if it’s tough and sad and harder than anything you can imagine… even if many around you tilt their head and think you’re crazy for even imagining it.
Just keep swimming 🙂
Here is my story……..
My introduction to Melanoma started in May/June 2010, reading the front page of a Saturday’s Irish (Cork) Examiner.
It was the story of Garda supt Martin Dorney from Waterfall in Co. Cork.
The article went into great detail about the dark mole he had on the side of his right knee. I read with interest, as I also had a dark mole on the side of my right knee!
His story was heart breaking. His GP removed the mole, but overlooked the letter of recommendation for a wider excision. Some unfortunate behaviour by the GP followed and years later, the poor patient was terminal.
I made a mental note to say it to my GP on the next visit, which was early July, 2010. The mole was actually itchy at this stage, but I wasn’t giving it any notice.
When Dr. Ger saw it, he said it had to come off. I can remember laughing at him that it had to wait – we were going to France in four weeks time. He was dead serious telling me it’ll come off before I go on holidays. And he was right.
Two weeks later I was into the Melanoma clinic in Cork.
When the lovely lady doctor saw it, she called all the student docs and told them that this is exactly what they were looking for, “this is melanoma”, turning to me she said “you have skin cancer”. I couldn’t speak!
I was instructed to come back in about 4 hours and she’d cut it out. I was dumb founded! I walked out onto the street and just stood on the footpath, numb.
I associated cancer with death, I was 36, married with 2 kids, 10 and 8. I got the fright of my life!
We were on holidays in France when Dr Ger rang me – to confirm it was cancer. I just wanted to come home.
In September I had the wider area removed. It wasn’t a great time for me as my dear friend Evelyn died Sept 27th from cancer, leaving 3 kids, the youngest was 6.
Waiting on test results to see if they had got it all, was torture. But thank goodness the margins were clear.
My melanoma was 1mm, so, borderline if lymph nodes should have been removed. The decision was made to leave them. At the time, this was double Dutch to me.
I attended the melanoma clinic til Jan ’15, where I was shown how to check myself correctly.
August 2015 I found a lump in my groin. The size of a pea and it was hard. I knew not to wait around. I was at my GP that morning and back to the melanoma clinic for biopsy.
The following week I was in for my results. I never have the luxury of my husband being with me, as he is self employed. But then, I think I’m probably better off – he’d go off his head sitting in a waiting room. Waiting rooms are funny places! Dr Phil is on the telly, I might look as if I’m so engrossed, but in fact I’m not taking in a single word. I could bring something to read, but the words are not sinking in and I find myself reading lines over and over again and I’m still not taking it in. I’m not the only one. I prefer to sit and close my eyes and wait… see if the wonderful nurses can pronounce my name.
10th Sept ’15, it was confirmed; I had cancer in a lymph node on the right side of my groin. Sept 11th, we had our own world crash, my husband’s brother died unexpectedly.
On Sept 23rd, I had all these lymph nodes removed. I was assured it was only in one lymph node and relieved that I had caught it early.
I’ve had two PET scans since.
November ’16 I was told I had a lump in my right breast. I had to attend a different hospital to the breast clinic. Christmas week I had the biopsy.
What a horrible time of the year to be waiting on test results. I couldn’t tell many, as I didn’t want to ruin their Christmas. Thankfully, in Jan I was told it wasn’t cancer.
I often think about how luck I am – I’m in the system, in the care of a wonderful consultant and nurses.
I didn’t go on sun holidays as a child. I grew up on a farm, where we all had to help out. Everyday, all day long we were out doors – no such thing as sun screen!
I used sunbeds a few times in my 20’s, but turned a rosy burnt red, rather than the golden brown tan, I desired. All sunbeds should be crushed!
Please check your moles – check your family’s moles. Catching something early you have a 95% chance of survival. That sounds good to me.
Its a pity my guardian angel – the garda from Waterfall, wasn’t so lucky.
Love & kisses,
My name is Caoimhe and my story started when I just turned 15 years old.
I had this freckle on my left jaw line for as long as I could remember, I had many freckles growing up as a child so I didn’t really think anything of it or paid attention to it. I was at my local doctors and my mother told her about this freckle I had and how she has noticed a changed in it. It started off as two freckles a light one and a dark one. The darker one started to take over the lighter one. My GP said that it might not be anything sinister but we should get it removed and tested just in case. I was told that I would be on a years waiting list to be seen in Cork to have it removed.
I was then taken off the waiting list in Cork and got quickly seen to at my local hospital in Wexford. I remember waiting to be seen by a dermatologist and when it was my turn her asked about family history did the ABCDE rule and asked my Dad about history in my family. He then said he wanted it removed as soon as possible. All this was happening in a matter of weeks.
I got the mole/freckle removed on April 6th 2011, I was awake during the procedure and to me at the time it was scary because I had never had an operation before. I was then told I would get my results back within 6 weeks. Three weeks later I had a letter to come into the hospital for my results but after nearly three hours waiting I was told they didn’t have my results and to come back in two weeks.
I was back again May 17th 2011 and they had my results. I walked into the consultation room thinking I was going to see my normal doctors but he was there along with another 5 people dressed in white coats. That alone to me was very alarming because there usually wasn’t other doctors there during my previous appointments.
I was then told that my results came back that I had Malignant Melanoma, I was 15 I hadn’t a clue what was being said, I kept looking at my Dad to see if he knew what they meant. They were talking all these medical terms and I sat in my chair so lost. I had a superficial Melanoma. I was told that I was the youngest person in Ireland to have malignant melanoma that it is very rare to occur in younger people. I would then have to go to Our Ladys Childrens hospital in Crumlin to have another minor procedure to see if they had got all of the cancer.
Cancer never ever crossed my mind at 15, It was something I heard happened to peoples grandparents, not something that could ever happen to me. When we left the room I had to ask my dad what they doctors meant and my poor old dad had to tell his 15 year old daughter that she had a form of cancer. I was in denial for so long I would say sure it was only skin cancer it’s not that big of a deal. But as I get older I see how lucky I was to have had it found so early and to have it treated so quickly. If my family never noticed it change then I don’t know if I would be here today.
All of this happened in the space of 6 months, I had check up after check up. My file was sent to different doctors around Ireland as again I was the youngest person known in Ireland to have had it.
I had a scare back in 2015 but everything came back clear. Since 17th May 2011 I tried to raise awareness with young people I knew about how to prevent skin cancers and protecting your skin. Your skin is the biggest organ on your body why wouldn’t you take care of it like you would your heart. You skin is your shield, it protects everything else. If your shield is damaged then you are at risk.
My Melanoma journey,
By Lynsey Bell.
Growing up in Northern Ireland we always experienced quite erratic weather patterns. One minute it’s raining, the next the sun is splitting the trees. Suncream wasn’t really part of our routine. Certainly on hot days and days away at the beach we would have applied some but that was it really. Me being ginger, pale skin and the freckles I was well used to the soothing relief of natural yougurt after suffering sunburn yet again. Not anybodys fault really. We just didn’t know, we just weren’t aware! The sunburn eased and life continued, no harm done…..
I was 33 years old, pregnant with my 6th child when I noticed a freckle on my right forearm slightly redder than usual. I noticed it but it didn’t concern me, I was pregnant after all and skin changes are common so I ‘forgot’ about it but was still aware it was there.
January 2015 came and I gave birth to another beautiful little lady. It was a few weeks after that I noticed a darkening around the red freckle. Again completely aware of the change I just thought I’ll keep an eye on this. Never for one second did I believe it could actually kill me. I was very naive and uneducated about skin cancer. In those few months after I was so busy with the kids and also my nan was in the final stages of lung cancer. She was my best friend. I had named my daughter after her and was glad she was there to meet her namesake. She deteriorated quite quickly and by March had passed away. I was devastated. What a horrible, cruel thing cancer really was… It was the day of her funeral things changed for me. It was a beautiful sunny spring day. I remember standing in her garden in my black dress and I caught sight of my arm. The freckle had an almost purplish tint to it. It looked really horrible. That was the first time I thought…this is bad, I need to get this seen to…
It wasn’t too long after that I was sitting one evening and decided to google. I entered ‘changing freckle’ into the search box. The images that appeared before me horrified me. They looked just like what I had on my arm. So I clicked on melanoma. To be honest I had never even heard the word before. Wasn’t even sure how to pronounce it. I simply could not believe what I was reading, deadly skin cancer, can spread internally if left too long etc. I was terrified. I rang my partner and told him to google melanoma. He himself had never even heard of it. A few minutes later he rang me back and said we must get you to a doctor asap.
Next morning at 8.30 I rang the gp. I told him what was happening. He said I’m sorry we have no appointments available and as it’s not an emergency I can’t see you until next week. I started to cry but still he wouldn’t budge. I then rang my partner and said he won’t see me and I have to wait. He was very cross because he knew I was in a bad way mentally so got me an appointment sorted out in a private clinic for two days time.
Those two days felt like forever. I was utterly convinced I was going to die. I simply could not function. Kept looking at my children and crying. What would they do without me! My baby wouldn’t even remember me. I desperately tried to hang onto hope but I just knew it was cancer.
The day of the appointment came and I was a nervous wreck. We went inside and the lady called us in and asked what had brought us here today, I showed her my arm…she scanned it and when I saw the image magnified on the screen I instantly broke down. I’d googled enough images close up that I knew what it was. I felt my legs go beneath me. She put her hand on my leg and said Lynsey, this needs to come off asap. Oh I begged her to just to take it off there and then but she couldn’t because it needed to be surgically removed. She said she would red flag me on the NHS but my partner said no. We’ll do it privately how soon can you do it. She gave us an appointment for two days time. I had to go home with that thing on my arm. First time I ever saw my partner cry, that journey home.. we both cried. Him saying he’d look after me no matter what and I’d be ok and me saying if it’s bad you will have to find a mother for our children. The darkest days of my life. It was that evening I searched facebook and found a support page. I was accepted immediately and instantly felt like I belonged there. That was to be my saviour in the coming weeks, knowing that I wasn’t alone.
The day of surgery came and I felt quite calm. I just wanted it off now! I remember laying on that bed, feeling the dull sensation of the knife cutting through my skin and in a weird way enjoying it!? I just felt so relieved that it was coming off! My dermatologist did try to reassure me. She knew I was terrified. Not knowing much about stages I was worried that because I’d had it so long it would be a stage 4. She did tell me if I was intent on scaring myself with google I must only google early stage melanoma and she gave me a few websites to look at and off I went with seven stitches in my arm.
I tried to keep things as normal as possible. I knew it would be at least two weeks before I heard anything. I chatted with new friends I had met, read stories and felt comfort from them. I just prayed every night that it would at least be thin enough that I’d have a chance. Think I lost about a stone in weight.
Exactly two weeks later the phonecall came. The secretary said can you come in tomorrow. I knew that if it was nothing she would have told me over the phone so I tried to prepare myself, knowing I was going to hear the words nobody ever wants to hear ‘you have cancer’ at 34years old. I just prayed I’d got it early.
We waited for what felt like an eternity in that waiting room. I saw her go in with another nurse and I convinced myself she was there to support me. We were called in. I sat down in front of her and she asked how I was. I said ok. She asked how my scar was and had a look at it. She continued to hold my hand, looked at me and said Lynsey, I’m sorry but it was a wee melanoma…all I heard was the word WEE!! I held my breath and waited….But, she said you’ve caught it early and it’s extremely thin!!! I knew that anything under 1mm carried a good prognosis so when she said it was 0.6mm I breathed a sigh of relief. Weird reaction from somebody who has just been told they have cancer but because I’d scared myself silly and convinced myself that I was going to die I was so relieved that I at least had a chance to beat the thing! A chance to live! I was staged at a 1b and given a date for second surgery to remove the surrounding tissue as a precaution. That was the first night I’d slept in weeks.
The day of the second surgery arrived. It was much tougher than the first. My arm really hurt this time. Think I had 13 stitches. I had alot of help and support at home so I recoverd well and exactly 10 days later I got the wonderful phonecall that the surrounding tissue was clear and I was now no evidence of the disease. Worst thing about melanoma is that you’re never really cured. There’s always a slight chance it may come back. I’ll be monitored for the next five years and then discharged but never really clear unfortunately.
So…what was I to do now? My life had changed so much. I wasn’t the same person I used to be. While I tried to remain positive I was still very scared and traumatised by the whole experience. I knew for the sake of my children I had to find a way to learn to live again so with the many friends I’d met along the way, each of us experiencing the same fear, anxiety that a cancer diagnoses brings we did just that. We marched forward. I was blessed again on September 16′ with another little baby girl and she reminded me about everything good in life. Gave me even more of a reason to keep going forward. Helped me to learn to live again.
I’m 38 diagnosed in November 2015.
I had been to see my GP about a mole on my back then waited a year and a half for an appointment with a dermatologist.
I was heavily pregnant when they removed the Mole and less than two weeks later my life was turned upside down.
I was on my own and pregnant when I was told it was melanoma…… I sat there listening not really knowing anything about what she was talking about. Seen the plastic surgeon half an hour later again on my own and when he mentioned Nodes and Biopsies I broke down. I left the hospital with very little information and full of fear.
Been pregnant I had to wait until my son was born before they could do the WLE, that was two months later. Those two months were an absolute nightmare. Not knowing if it had spread and also I have a little girl and every time I looked at her I cried, the fear of not been here for her and not seeing her or my baby grow up was tearing me apart.
I had the WLE two weeks after my son was born and thank god it hadn’t spread.
Last year was really tough, every ache or pain I got my head went into a spin. As for the summer, I spent most of it in doors as I was so afraid of the sun.
I took part in a video for Marie Keating skintervention and also they did a piece in the paper and put my story in.
My mole was really big, black, irregular borders and I had no idea about Melanoma.
More awareness and education needs to be made and this should start from a very early age. People like me need to realise how deadly melanoma can be and it’s “not just skin cancer”.
A year on and I still struggle and I’m still terrified but I’m taking one day at a time. One thing this has thought me, is to enjoy every day, to listen to my kids when they call me and put the cleaning on hold and when my little girl wants the 6th or 7th story read at night…… read it because it’s the little things that are important.
In the three years I have been doing the awareness push via social media I have never really told my story.
It all started five years ago, I was in the Cardiac unit in the Mater after heart surgery and had been in hospital for most of the previous three months.
I had managed to get up for the first time in weeks (my motivation was having a good shave), that’s when I noticed a new freckle had appeared on my neck, with everything that was going on I just forgot about it!.
Fast forward two years and I was sitting in my Cardiologists office discussing plan B a heart transplant. The very next morning whilst having a shave I caught my “freckle” with a razor and it started to bleed, I was not too concerned with the bleeding as I am on Warfarin, but two weeks later it was still bleeding and starting to raise so I went to my GP who took one look at it and said “that Beastie needs to come off” he then referred me.
After about six weeks I went back to my GP because I had not heard anything regarding the referral, he tried to phone the specialist unit to see what was happening but could not get through! So I asked him to remove the mole there and then. He said it was against his better judgment, but agreed to do it. Two weeks later the biopsy returned with the result, it was cancer and it was very deep (6.2mm)
For two days my GP and his secretary were on the phones trying to get me in to see a specialist luckily they found a great one.
Two weeks later I was in Galway having a neck dissection, the PET scan I had was clear so I felt very lucky.
The surgery had added complications because my heart function at the time was only around 20% and I also have an ICD implanted (internal cardio defibrillator) that had to be switched off, my specialist said “it was to stop me bouncing around on the operating table” 😉 so it was a very worrying time for my family.
Just after my neck dissection and removal of lymph nodes, glands & saliva gland.
A few weeks after surgery I was informed that plan B was out of the window because I have to be clear of cancer five years before I can be considered for a transplant so it was a bit of a double blow.
Three months later I was talking to my specialist and I said I wanted to raise money for melanoma I don’t know what I was expecting to do, I could not really run a marathon 🙂 and she said “the best thing you could do is raise awareness” so that evening I started Melanoma awareness Ireland on social media.
The last few years have not been easy my heart has a tendency to stop, but luckily my ICD gives me a jump start when it does 🙂
I am currently three years NED and now on six monthly checks rather than three, My Cardiologist has started to get the ball rolling again and the last few weeks I have been having more tests (no results yet) I feel blessed to still be here with my family and enjoying life, and still pushing awareness here in Ireland.
I would like to thank all the Nurses and staff at the Cardiac/Intensive care Unit St James, Mater Cardiac Unit, Sligo Cardiac Care Unit, Sligo Heart support, Galway UHG, And my melanoma specialist and her team at Roscommon hospital and finally my GP and practice Nurse (Riverstown) who keep a very close eye on me. 😉
All the best, Brian
I was diagnosed with stage 3 malignant melanoma aged 32 in 2012. I went for a routine smear test at my gp and asked her to have a wee look at my 1 and only mole. So we decided to get it checked by a specialist as it was beginning to itch and I wasn’t sure if it had started to change colour. I had it for as long as I can remember. I met the specialist and he said I needed to have surgery to have it removed the week after. I said I didn’t have time and he told me it had to go asap. So I agreed to surgery the week after in the afternoon so I could do what I had to do in the morning. I had the day off after and went back to my busy life.
2 weeks later I got a phone call to come back, yet again I was too busy, so he told me the biopsy came back positive, I had melanoma and was being referred to a melanoma specialist in Galway the following week. We met him and he said he would need to operate again on my arm to check that it hadn’t spread any deeper or wider on my arm and take the sentinel lymph node… guess what? I hadn’t time! We were going to Paris for a week, the week after was the all Ireland final, Mayo vs Donegal. So I had to make a choice, we went to Paris. Surgery was the following week, my cheering arm was in a sling when I own county beat my adopted county in the final.
I couldn’t go back to work after this surgery. The biopsy came back, the arm was clear but the lymph node wasn’t. Reality kicked in, but I couldn’t understand why I had cancer with no sickness, pain, tiredness and all the things we associate with cancer. So it was back the first week in November for more surgery, all the lymph nodes in my left arm were removed. I asked what was my worst case scenario and they said they would expect to find it in some more nodes and my time could be short, best case was they would find it in none. They found none thank God.
They found 2 lumps in my neck in December but both came back clear. I then began interferon treatment in January for a year, I had 161 doses in total which finished on the 10th of January 2014. It was without a doubt the toughest year of my life, with many of the side effects of other chemotherapy patients. It was 5 days per week for the first month, my body refused a few doses in the first month, it got too weak to take it, then 3 times per week for 48 weeks.
After that I began to attend dermatology and will attend for 7 years. We got engaged in March and got married in July 2015 and after checking with oncology, we decided we would try for a baby, but we’re not expecting it to be an easy journey. In September I began to get tired and sick, I automatically thought it was melanoma again…. nope, I was pregnant. The shock!! When I went back to oncology I got discharged. A few weeks later at our scan we got another shock, I told the lady about my journey and how shocked we got pregnant so fast…. she had another shock for us!! We were expecting twins!!
The pregnancy was straight forward, there were no complications, it was fairly easy after going through interferon. Our miracles were born at 34 weeks, which is normal for twins and are now 10 months old. Just over 4 years ago I nearly died and had a very rough 2 years, it just makes us appreciate life even more and we are so blessed to wake up with these 2 happy and healthy babies every morning… and the odd night!! And you never know our wee man could be in Croker in the 3rd Sunday in September some day!!!
Hi I am from Cobh Co Cork I would like to share my story, I went to see my GP on December 2015 with a mole on my neck, I was referred to the South infirmary hospital Cork in January and I saw the dermatologist consultant.
I had my first surgery on the 11th of January 2016 and the biopsy results came back on the 2nd of February, it was melanoma and my case was discussed with a team of doctors to see what my following treatment would be or if I needed any. I then had a second operation on the 3rd of March in which they went into my thyroid gland just to make sure the nodes were removed.
I am now attending this hospital over a year now every three months for three years and every six months for two years,
I am so grateful for everything the hospital has done for me I am positive now and getting on with my life and feel so blessed, all I can say to everyone is have a healthy 2017
If you would like to share your story to help raise awareness please e-mail it to firstname.lastname@example.org
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