How did this happen?

So here we are in October 2019 but I think I’d better take you back to January 2019, just into the new year.

I am a ‘woman of a certain age’, as my friends would say when we choose to find a table in a pub, rather than stand at the bar, and I rarely stand naked in front of a mirror. Let’s be honest, who does that without feeling bad about themselves?? But on this particular occasion, I did catch a glimpse of myself in the mirror after a bath one night and noticed one side of my tummy looked different to the other.

Now, I certainly do not have a wash board tummy but I’m not massively over weight and back in 2009 I had a hysterectomy so I have a straight scar at the base of my tummy. As I looked in the mirror, I could see that one end of the scar was slightly raised. I had a feel about and could feel a small lump.

In the Summer of 2018, we moved back from the UK to Ireland. The run up to Christmas had been hectic with lots of furniture being moved and several ferry trips back & for to the UK to collect heavy boxes of Christmas decorations. With these things in mind, I wrote the lump off as a hernia. Christmas had also seen some serious partying and, as I am sure you will find out on this journey with me, I love red wine, sherry and Honey Jack! I don’t tell you this to show off, but to explain another thing I ignored. When I went to the toilet, my urine smelled. Now before you skim over this part, let me say it wasn’t an unpleasant smell. My friend always used to describe urine as sugar-puff-pee when she had eaten too much sugary cereal; this was not unlike that. Again, I figured I needed to cut back on the alcohol in the new year.

By April the supposed hernia had grown to approximately the size of my thumb. I finally confessed to my friends in a private WhatsApp group about this lump. In the group, there is me, a friend in the UK who is a nurse and a friend in the US. Having confessed to having a lump and tried to take a photo of it without them seeing my unshaved bikini line – just don’t even ask! – they were insistent that I go to my GP. After much questioning, I revealed I had noticed the lump in January – they were apoplectic. I grudgingly realised action was required.

My GP agreed at first that this may be a hernia. When I look back now, I wonder if he suspected something else but decided not to worry me. He referred me to a surgeon who was based in Tralee hospital but holds a surgery in our town each month.

The appointment for the surgeon arrived quickly and I met with him at the small community hospital. I explained I thought I had a hernia and he asked me to stand by the hospital bed for the examination. Almost immediately he asked me what had happened to my leg – even after plastic surgery I still have a fairly large scar on my knee. On holidays, if children ask me, I like to say it’s a shark bite. Having explained the history of the melanoma, I felt the shift in his conversation and knew there & then that this was not a hernia.

He traced up my leg an exact line from the scar on my knee up to the new lump on my tummy. It was so obvious once he pointed it out. He explained he felt this was the melanoma returning but his time in my lymph nodes. He asked if I had come to the appointment alone. Alone? I hadn’t even booked the afternoon off work, I had popped down in my lunch break! He advised he would book me in for some more tests at the hospital that week as speed was now of the essence.

I got in my car and rang my friend who had visited me every day in the hospital back in 2004 – fifteen years ago! How does something come back after fifteen years?? As I told her what the surgeon thought, I started to cry. I must confess my biggest fear at that point was losing my hair through chemotherapy – vain, I know, but that’s the truth.

The following Friday, I had a CT Scan and several blood tests in Tralee Hospital and an appointment was made for a biopsy of the area.

After a terrible experience in Tralee having the biopsy, which I don’t feel it would be fair to write about just yet as I have an ongoing complaint, I got the call late one evening from the surgeon. He explained that yes, the melanoma had indeed moved to my lymph nodes. He advised that had this been ten years ago, he would be telling me to get my affairs in order. But science has moved on so much and, thankfully, he was very optimistic about treatments and the outcome. My partner took this news terribly. He only heard the bad news, not the optimistic part. He was devastated.

The surgeon explained that I would now be referred to Cork University Hospital to Professor Redmond who is a melanoma specialist. He speculated that I might have chemotherapy but there was a new thing called immunotherapy. So there it was, that awful word – chemotherapy.

I feel like I should tell you at this point that back in 2003, I was a sun holiday, golden tan girl. But from 2004 onwards, I played by the rules – Factor 50 in the sun, always a hat etc. I felt so angry that after I had ‘done the right thing’ the damn melanoma had still snuck back in there.

But no time for anger, on to surgery and treatment….

Niagara Falls, 2013. Factor 50 all the way – not a care in the world.

My First Blog Post

Have I really agreed to this?

So this is my very first blog and, my first venture into the world of blogging so if I ramble on or don’t say enough – please tell me!

As all good stories go, I had better start at the beginning…..

In 2004 I was diagnosed with malignant melanoma on my left leg, located just on my knee. It was a mole on my leg that had always been there and then one summer’s day in 2003, after a holiday in Greece, I noticed it had started to bleed.

I can’t say I rushed to the GP or that I was immediately terrified – I’m not sure I actually do ‘terrified’. But I did take my self off to my GP who referred me through to a plastic surgeon in St Vincent’s Hospital in Dublin. This was August 2003. The letter arrived from the hospital pretty swiftly but the consultant appointment was for September 2004!

The 2019 me would have picked up the phone and started creating a noise about the waiting time, but 2003 me just thought that if they weren’t in a hurry, then I shouldn’t worry.

When September 2004 actually did roll around, things moved pretty swiftly. The consultant diagnosed the mole visually but obviously a biopsy was required. This was done within a week. Again, completely oblivious to the seriousness of the situation, I headed over to the UK on a girl’s weekend. Only when I received a call from a nurse in St Vincent’s telling me that the bed was ready for me in the ward and I needed to be back that night, did a small light bulb go off in my head that maybe this was not panning out so great for me.

The melanoma was 3mm under my skin which was extremely serious at the time. My sentinel node was removed in my groin to check where else the melanoma had spread. Not if, but where.

Times were different and there was less of a rush to move patients back home then. I was bandaged completely on both legs as a skin graft had been taken from my right thigh for the wound site. I stayed in hospital for three weeks. I was blessed with incredible friends who crossed the city to visit me every day.

Finally the oncologist came to see me in the ward. As he pulled the curtain around my bed, it finally sunk in that I was in deep trouble – I know, I can be slow on the uptake!

However, as it turned out the oncologist announced I was the luckiest person he had ever met. The melanoma had not spread. Whilst I would be monitored for the next five years, I would require no further treatment. When he left the ward, the nurses crowded around me and said they thought I hadn’t understood the consequences of malignant melanoma – they were probably right.

I spent the next month on crutches due to the location of the wound site, but I was home and I was cancer free!

During the next five years, I never once expected any of my follow up appointments to be anything other than routine and once that last appointment was done I can truly say it never occurred to me that the melanoma might return.

And yet, here I am in 2019. I will continue on my next blog……..

Waterville, Co Kerry. The Wild Atlantic Way

Who am I?

Hi! My name is Rachel and I am lucky enough to live on The Wild Atlantic Way in County Kerry, Ireland. I moved here in 2018 with my partner, Paul, and our wayward ginger tom, Roger.

I was diagnosed with Stage 3 Cancer in 2019 and started Immunotherapy in September 2019. The plan is to stay on this treatment for twelve months.

I hope that this blog will give some help to anyone trying to make the decision whether or not to take the plunge into Immunotherapy. I have no idea how my journey is going to go but if sharing it helps only one other person, then it has to be worth it.

I hope this will be true of this blog.