Married mam-of-two Amanda Seymour tragically lost her battle against melanoma skin cancer in August at the age of 42.
Before her death, Amanda, of Pelton, near Chester-le-Street, wrote about her ongoing fight to promote the work of Sunderland-based counselling and support service MelanomaMe. We reproduce her words with the permission of the service and her family.
My rollercoaster adventure began back in the noughties, although it probably began as a child using Nivea cold cream to soothe reddened skin from the annual Butlin’s holidays to the South Coast and the many fabulous days spent at South Shields and our many lovely North-East beaches.
Truth be known, the real damage was done getting a “healthy base tan” on a sunbed in my teens and early 20s.
But don’t worry, I was lucky, I just got skin cancer, cut it out and shrug it off!
I am really “lucky” that despite my fair skin, blonde hair (before I was robbed of it with intensive double dosage radiotherapy to my poor brain) and blue eyes, I actually tanned (deliberate use of the past tense) really easily and rarely burned although I “caught” my shoulders and chest a few times over my carefree younger years of late teens and early 20s, when everyone knows you are invincible.
Do you know what caused my current precarious situation? A pesky little mole on my right ankle. January 2011, at an unrelated GP appointment, I mentioned to my life-saving doctor about a mole that seemed to be itching more and occasionally bleeding. He booked me for an urgent referral (this is two weeks under NICE NHS guidelines) to the dermatology unit at the University Hospital of North Durham.
Not really thinking too much about this, I went along alone to the appointment.
The registrar examined it several times looking more perturbed each time he looked until he sought the opinion of his consultant, who took one look at it and said “prep her for surgery, that needs to come off now”.
From her reaction, and other staff coming to see, I kept getting that look you get when things aren’t good – a mix of sympathy and fear – I have had too many of those now to not instantly recognise it.
Results came back – malignant melanoma – but hey that’s ok because they had cut it out. “It’s just skin cancer.”
A full and intimate body check ensued during the receiving of the “you’ve got cancer” meeting. Apparently you can get melanoma anywhere on your body, inside and out. I have the scars to prove it.
I needed to have further surgery to remove another three suspicious lesions (abnormal looking moles) and also further surgery to the original mole excision to ensure they got it all (which they did) and it needed a skin graft (extremely unpleasant and not recommended – sun cream is far less painful) which required a hospital stay of six days, a wheelchair, Zimmer frame, crutches, one year physio, and three months off work unpaid with permanent scarring and nerve damage as its legacy.
I had two further surgeries that year with more suspicious lesions removed. Luckily, they were all benign but the anxiety and waiting for results was and still is no easier to endure.
Fast forward to January 2013, a suspicious brown streak appeared on my big toe of my right foot, so off that came too – nailbed biopsy – ouch!
Then – drum roll – everything settled down and I continued with my three- monthly follow-ups at hospital (and continued my own monthly lymph node and skin checks at home) which were always clear and despite the anxiety leading up to the appointments, I became a little blasé and dared to get on with my life, always wearing SPF50 sunscreen, no longer blasé with the sun.
Roll on January 2016 and I had my final check-up, all clear and so was discharged. Totally cancer free. Woo hoo.
Life is a rollercoaster so they say, and one year ago I was back on that rollercoaster, whether I wanted to or not. Don’t panic though “It’s just skin cancer” if it comes back, they can just “cut it out” and all will be fine! Apparently not.
I found a lump. I hoped and prayed it was a hernia.
Dr Google confirmed it could be but also suggested testicular cancer, and as a young woman I felt this may be stretching belief slightly. Our wonderful NHS really stepped up to the mark for me: I had examinations, blood tests scans, painful biopsy and then the news. I knew it was bad, every time you get “the look’” you just know!
But how bad? Couldn’t they just cut it out??? “It’s just skin cancer”, said no melanoma patient ever!! I had gone from stage 1b to cancer free to stage 4 – incurable/advanced/terminal in an instant.
My life changed forever in that moment.
Not only had it invaded my pelvis and groin and abdominal wall but it had gone to my lungs, six tumours!!
I was booked in for major surgery with a view to starting to treatment to target the lung tumours (too many for surgery) once recovered.
Five days in hospital this time around and then months of recovery and post-operative complications of lymphedema and pulmonary embolus and DVT as a bonus prize.
Fast forward to May 2017, Melanoma Awareness Month, and I have been on treatment which has worked miracles on my lungs (a later scan before starting treatment showed they were multiplying rapidly and there were too many to count) not without a few scary moments, many scans, a few emergency admissions, some unpleasant procedures and hospital stays but I am still here one year later.
My lungs are doing well and the drugs have shrunk the tumours and only one is visible now.
However, as it’s incurable, they can only shrink and keep from multiplying; a holding pattern before it mutates, changes shape and begins to grow and multiply again. That’s a problem for another day.
Side effects have subsided a little and in January this year, I started back at my fitness group, doing modified versions of HIIT classes.
Sadly, in February my scan showed that the melanoma had gotten itself nice and comfy and made lots of melanoma babies in my precious brain – my biggest fear had come to realisation.
Too many (at least seven sizeable) tumours for specialist radiosurgery (less invasive) and microscopic tumours all over the lining of my brain.
It makes sense really, your skin is your biggest organ and it is already in your brain.
Imagine some pesky little testicular cancer cells, knocking on the door to your brain to be in! Go away, you don’t belong here!!
But melanoma is already there, it’s in your skin cells, it’s like a back stage pass!!
So, my melanoma groupies have made their way in and quite comfortable. Reluctant to leave the party and causing me all sorts of worrying symptoms while they’re having a blast. So, without too much time to think, I started an intensive course of whole brain radiation therapy (prognosis for melanoma brain metastases is approximately four-five months‘ survival so I had no time to waste) double dosage as they wanted me to continue with the targeted chemotherapy that is keeping my lungs in check during treatment which is not normally recommended because of the effects.
However, I completed this on March 1 and am still really struggling with the after effects.
I am a very naturally positive person but I feel completely heartbroken that my life is so precarious right now.
Three weeks ago I had a mini stroke attack caused from brain swelling.
A tumour bleed in the brain could take my life in an instant. I have to wait another month to find out if it looks like the treatment may have worked.
I may not be eligible for further treatment with active brain metastases. Without wanting to sound too dramatic, my life is hanging in the balance. Oh how I wish I had taken my skin and my life more serious, SPf30 sunscreen and no sunbeds could have prevented my situation.
I am high risk by skin type and I ignored it.
When I am gone, my wonderful husband, my amazing talented children who are 10 and 11 and should not be in this situation, and my beautiful family and friends will be left to deal with my unnecessary early passing. It feels so unfair, but it is what it is. I have and am taking the opportunity to not take things for granted and have a list of memory making to work through.
If you take anything from my story, please let it be to protect your skin and your family and friends by avoiding sunbeds and applying sunscreen, even on cloudy days.
Melanoma kills. It’s not just skin cancer.
Thanks for listening.