Jane was diagnosed with a melanoma in 2009 which reoccurred in 2013. Due to a delay in her being referred, Jane’s second melanoma was removed eight months later and her cancer had metastasized. Our Mobile Support Unit helped Jane manage the effects of her surgery and she now works with our ‘Here Comes the Sun’ team to provide information and advice to schools and the public about how to stay safe in the sun.
This is Jane's story:
“In 2009, I had a mole on the right hand side of my neck that had changed. My mum said that I should get it checked out because it looked unusual and my son who was 18 months old was touching it all the time and as he got older started to ask what it was. I began to think maybe there was something.
I hadn’t been concerned about it because I’m not what I would call a sun-worshiper but I found an old photograph where I was holding my son and looking at it I could see the mole had changed. The mole was bigger and within the surface there were darker little lumps. If you didn’t know what it had looked like before you wouldn’t have thought anything of it, but it had definitely changed.
My GP sent me to the Royal Gwent Hospital in Newport. I saw the dermatologist there who took one look at it and half an hour later I was with the plastic surgeon to have the mole removed. I assumed that he thought it was something and felt so glad I had gone.
The tests came back within two weeks and confirmed it had been a melanoma. They then had to do a wider local excision which takes away more of the tissue from the margins around where the mole had been to make sure that all of it had been removed. I was on a three year follow-up after that, returning to hospital once every six months to have the site and the surrounding area checked to make sure it hadn’t come back.
In December 2013, I was colouring my hair and washing it off when I felt a small hard lump underneath my right earlobe and I just thought ‘it’s come back’. I went to a GP who said that it was probably just my glands due to a cold or flu and told me not to worry about it because my previous melanoma was in situ and the surgery had removed it. In work I’d been asking everyone if they could feel a lump on my neck to just to confirm that I wasn’t going mad or being paranoid. I went back to the doctor in the January because I thought it had been getting bigger and he suggested that it was because I was run down and stressed.
In February, the lump was still there and I went back to the doctor a third time to insist that I was referred or to ask to see another GP. I was reluctantly referred for an appointment in mid-March to a consultant at the Royal Gwent, followed by an ultrasound and a biopsy that later confirmed that I had melanoma in my lymph node and the lower part of my parotid gland. I was called to have a neck dissection; an operation to remove all the affected lymph nodes and to take out the lower part of the parotid gland which went ahead in August 2014. My cancer was stage three and had metastasized and when I think that I had first noticed this in December 2013 I wonder how much worse it was eight months later just because my GP had been reluctant to refer me.
For melanoma the treatment is to have it removed and depending on where it is will affect how successfully they can get it out. My scar runs from the top of my ear and ends at the front of my neck, it’s quite big and the damage to nerves has left the surrounding area numb. Because I had my lymph nodes taken out, the lymph fluid that can’t drain off naturally collects around my jaw. In the mornings I wake up looking like I have gone ten rounds of a boxing match; my eye and face will be swollen where I have laid down to sleep and I’d have to push it around to distribute the fluid more evenly.
These treatments aren’t always at the same hospital either and at one point I was visiting the Heath in Cardiff, the Royal Gwent and Velindre; and the cost of driving was horrendous. When I asked if there was any way of being able to massage myself and the possibility of using compression bands, I was given the details of Tenovus Cancer Care. I was told they have a Mobile Support Unit I could visit for treatment near my home in Blackwood. The staff on the Mobile Support Unit showed me how to massage the affected areas and gave me some very fetching compression bands for my head and neck.
I had a really good experience as there were no waiting times and the visits helped me to understand why this fluid was collecting and how to manage it. I had three sessions; the first time the massage was done for me and then I was helped through doing it myself on the second and third visits. My son came with me one time because he wanted to have a look inside this great big thing and he thought it was amazing.
I really wanted to make sure I knew everything possible about the disease and all the various outcomes and types of treatment available to me and what I could do to be proactive about it. I found a year-long immunotherapy trial I could go on because I was what’s called ‘BRAF positive’ which is where your own gene becomes faulty and it’s not an inherited problem. I never felt like questioning why I had cancer because it could happen to anyone so I was never annoyed or angry about it but I definitely felt that the more information I had, the more ways I would have to try and deal with it and plan for any eventuality.
People in the group of trial patients I was in had similar stories to mine and were dying. There were times where I would have a complete meltdown when I was on my own and think ‘I don’t want to die of this’ and as a single parent it’s mostly just my son and I so I started thinking about having to get things ready just in case. For my son and everyone else around me, I kept a brave face but sometimes I would think about seeing him grow older and how I needed to be there to mould him into the adult he’s going to be. I needed a bit longer than me going while he was only six years old.
The worst time for me has been when the trial ended because I was in limbo and not proactively doing something. Once the treatment phase has finished you’re left to watch and wait and to everyone else you’re alright now because you’ve finished your treatment but cancer consumes your mind and every time you get an ache, a cough or a pain you worry. The further I’ve gotten away from my treatment the easier it’s become and cancer isn’t quite the first thing that I think about in the morning anymore but I am always mindful.
One of the things I’ve realised from having cancer that has really been a gift to me is that life can be so short and it shouldn’t be wasted on doing things that you aren’t enjoying or that your heart isn’t in. I would often look at the Tenovus Cancer Care website to see if there are any opportunities to help and came across a position for their ‘Here Comes the Sun’ campaign and thought ‘brilliant’. I could spend my time telling people what I’ve been saying since having my cancer anyway; about being safe in the sun and how beneficial that could be. Having been a college lecturer before I’m used to teaching and going into schools and that’s really where we need to get this message across so that sun safety becomes a habit. We’ll be letting people know about mole changes, the different types of cancers, how UVA and UVB rays affect the skin and why it’s so important to always top-up the sun cream.”
If you're worried about a mole, call our free Support Line on 0808 808 1010 or visit your GP.