May is Melanoma awareness month and we have been asking for your stories.  Here is another very poignant story from Louise Williams.

Back in June 2016 when the weather improved and I got my legs out for the first time, my then 2 year old asked “Mummy what’s that black on your leg?” It was a mole I hadn’t noticed it before and felt that it looked different than others than I had. I went to see my GP who wasn’t too concerned but told me to take a photo of it next to a coin and keep my eye on it. She said I was due an appointment at the dermatology clinic for my eczema and to mention it to them when I went.

Months went by and I never heard from dermatology and I forgot about the “black” on the back of my leg. That’s how it was until the new year in 2017. I noticed the mole had become more raised and seemed to change quite rapidly, by March I had to shave around it as I kept making it bleed when I caught it with my razor. I realised I’d never heard from dermatology and rang them only to be told that I’d been discharged as an outpatient.

I went to see my GP and was immediately put on a 2 week referral. The mole had more than doubled in size was now itchy and weeping. I was seen by a plastic surgery consultant on the 4th May 2017. I was asked a lot of questions about whether I’d ever been on sun beds or if I’d been badly sunburnt. The truth was I hadn’t ever been badly burnt. I’d used sun beds on the odd occasion when I was younger as I was under the misconception that it would stop me burning in the sun when I went on holiday. I rarely sit in the sun. I just don’t like the heat. I never tan and am always pale. My family gave me the nickname Casper as a child. In fact I was stopped by customs on return from my 2 week honeymoon in the Maldives because they didn’t think I looked liked I’d been on holiday and thought I must have been trafficking drugs.

On 10th May 2017 the mole was removed under a local anaesthetic. I listened to so many people telling me that they’d had this mole removed and that cancer taken away but none of it reassured me. I didn’t want to hear other people’s positive outcomes because that meant odds were on for me to have a negative one. My own husband had beaten cancer just 2 years earlier and I didn’t want to think it could happen to us all over again! Something about the way the consultant had been at that first appointment told me it was something more.

On 30th May 2017 I returned to clinic to be given my diagnosis. 2.9mm Melanoma. I would need a wide local excision and a sentinel node biopsy. The skin cancer specialist nurse sat with my husband and I immediately after seeing the consultant and answered any questions we had. I could tell that it was serious but I still didn’t realise just how much.

On 19th June I arrived early at the hospital for a scan. I had to be injected with a radioactive dye at the site of the mole for my sentinel node biopsy. That afternoon I went under general anaesthetic for the first time for my wide local excision and biopsy. I’d been really worried about being put to sleep and could feel the panic set in as I waited in the anaesthetic room. All went well and I was able to go home at 9 o’clock that evening, I’d be back in clinic 4 weeks to see the consultant. I had been left with an impressive scar that I felt I could easily pass off as a shark bite!

I was called back into clinic within a couple of weeks. I knew it couldn’t be good news if they wanted to see me sooner. My fears were realised as we were told that melanoma cells had been found in the nodes that had been taken for biopsy. The skin cancer nurse spoke to us again and I broke down. I was going to have yet another operation. The best treatment for melanoma is removal and so I was listed to have a block dissection of my left groin.

During the second week of the school 6 week holiday on 31st July, I went back into hospital for my next operation. Once again surgery went well. I was fitted with a bomb drain for the fluid in my thigh and I was to remain in hospital “for a few days!” I had been in hospital for about a week when I started to feel unwell and the pain in my leg seemed to be getting worse not better. I missed my two boys terribly and although I spoke to them on the phone and had some visits, their grandparents were trying to make sure they could enjoy their school break!
It became apparent that I had an infection and I was started on antibiotics. I was on nil by mouth in case I needed theatre for the infection to be washed out after a failed attempt to drain it on the ward. By the Wednesday of my second week in hospital I was being prepped for theatre once again.

My husband had spoken to the skin cancer nurses who hadn’t realised I was still in hospital and had stopped visiting me. They were originally coming every day. My results were back from my op the week before. My husband was told to meet them on my ward, my consultant wanted to speak to us as he wouldn’t be back in the hospital until the following week. Despite it not being how they would of liked it on 9th August moments before I was whisked to theatre for a wash out, I was told melanoma had been found in 3 of my lymph nodes. That meant my cancer was at stage 3b and as well as the op I was having that day, I would need a further operation on my pelvic area after abnormal nodes has shown up on a previous scan. They weren’t taking any chances.  I fell apart. My world felt like it was crumbling.  I missed my boys. My dog. I told my husband I wanted to go home. I cried all the way to theatre. I was only 32.

After over 2 weeks in hospital and with a bigger drain fitted I was allowed to go home and spend some time at my parents caravan in Wales with my family. I’d seen my dressing and drain changed so frequently I knew what I was doing! I couldn’t get out much but I enjoyed relaxing and having my boys close by.

A few days went by & I felt the pain in my lower leg was too tender to touch. After speaking with my nurses I decided the next day I would head home a few days earlier than planned for a check up as it could have been a clot. In the car with my Dad 45 mins from home I suddenly felt very unwell. Within minutes I phoned an ambulance as I was unable to get my breath, my hands tingled and I felt like I wasn’t in my body. It transpired I was having a panic attack. The paramedics were lovely and reassured me that my symptoms were very real and I hadn’t wasted their time. In that moment whilst waiting for the ambulance I thought I was dying.

I returned to the hospital once again on 30th August for key hole surgery to remove nodes on the left pelvic area. The hospital seemed so familiar these days I wasn’t worried about being put to sleep this time. I only had to stay overnight.

A few days later I received a phone call from the Willow foundation. They organised special days for seriously ill adults, my nurses had nominated me and I’d been accepted. I could chose a special day out for me and my family and they would help to organise and fund it. We chose to go to kidzania in London when I was more mobile. At last something to look forward to. We aimed for November.

After a couple of weeks my results came back and they were clear! The melanoma hadn’t spread any further and I was cancer free!! I should have been relieved but I just didn’t feel it. I felt so scared. For the past 3 months I had appointments every week, surgeries and people checking up on me. Now I felt I was being left to fend for myself! My skin cancer nurses referred me for counselling and I went on a course of acceptance and commitment therapy. I was hoping that everything would go back to normal and things would be as they were. My therapist helped me to realise that I had been through a massive life changing event in such a short space of time. She helped me to find my new ‘normal’ and I have to focus on the things I wanted to achieve to help me get better.

I was seen in the lymphoedema clinic and have been fitted for compression garments to help move the fluid out of my leg. I wear them during the day, every day and can take them off at night. They aren’t in the least bit comfortable but they make me feel supported and the results are fabulous so far. I don’t know how long I’ll have to wear them for but it’s a small price to pay for my health.

At the end of November we went on our special trip to London and made memories that will last a lifetime. It was great to be able to spend quality time with my husband and boys after missing out on the summer holidays. In December I went back to work on a phased return and although it terrified me I knew it wasn’t physical capabilities holding me back.

On 13th December less than 2 weeks after being diagnosed and after a very short illness my grandfather passed away from pancreatic cancer. At 95 he just wasn’t strong enough to beat it. He’d lived an amazing life but it still didn’t seem fair.

My scans in the new year came back clear again and things are looking good for me. But cancer doesn’t care who you are and what your age. I worry that it will come back but I’m ready to fight it again. The last conversation I had with my Grandad was me reassuring him I’d be fine! I made him a promise and I’ll stick to it!

Thank you for reading my story.

Louise Williams