Hi everyone :)

I'm Kieron, 30 years old. For a few years now I've often looked to this forum to see how people cope and help eachother regarding cancer but I wasn't a member and didn't post. Recently, I've been restaged as a stage 4A (apparently melanoma has a 4 'A' stage..) and felt that it would be a good time to share my journey here.

So, from 2012 to now here goes, 

In September 2012 after being concerned over what looked more like a mark than a mole on my chest, I sought a medical opinion. At the time I had no idea that there was even such thing as skin cancer and hadn't given it much thought right up until a dermatology appointment and excision later and the consultant confirmed to me that 'sorry to say it is a melanoma'. Even at that point my reaction was quite subdued. I was 22 at the time and wasn't in a good place anyway so kind of took it as a 'ah, well okay then I guess'. A wide excision later ruled out any satellite spread and they deemed me as cured, or as close to cured as they could say. I would learn in the future that cure isn't really something you can ever garantee.

So, that was that for five years. Five years of having the occasional check of my lymph nodes under my arms, neck and groin to see if there was any swelling. There was never any concerns on the dermatologist part and at that point I was actually told that I no longer needed the follow ups and to just make another appointment should I ever feel any concern in the future. 

One year later on 2018 and I had that concern. A pain under my right arm which at the time I thought was just a muscle sprain or soreness, as it went away after a few days. I couldn't feel anything and almost didn't book an appointment but with insistence from my wife (I was in a much better place at this point in my life) I booked one. The GP couldn't feel anything but referred me to dermatology 'just inacse'. Things suddenly changed once the consultant there said to me after feeling around for mere seconds 'yea, I can feel there's definitely something there'. From that point it really dawned on me that this stage 1, hopefully 'cured' cancer may be back. This time I had much more resentment as I felt I had much more to lose. I had a wife, house and job that I was happy with and thought I'd 'done my time' with this disease but I know now that it doesn't work like that.

Four agonising weeks later, after CT scans and a biopsy, it was finally confirmed as a stage 3 recurrence in the right axilla and right neck. I had surgery to clear the nodes from under my right arm and a dissection to remove most from the right side of my neck and my scar collection was looking pretty good at this point. Around this time, a shift in how I looked at melanoma and my outlook on life in general began to change. I was more accepting of the realities but still able to pick out the positives, or at least try to for the most part. The surgery went well and the consultation described the outcome to me and my wife as 'I was able to remove all of it, which I was surprised at because there was a lot'. To put into perspective, anyone with more than 2 positive lymph nodes would be classed as a stage 3C melanoma patient. Of the 80 lymph nodes I had removed from my right underarm and neck, over 40 of them were positive.. That's how definitive it was.

Nonetheless, I thought myself and still do, as extremely lucky at that point, as not only had I avoided spread to my organs and beyond, but the following CT scan had confirmed that all of the visible disease had been removed. I followed up with a targeted tablet based therapy of debrafenib and trametenib, which I was strongly advised to take as my melanoma has a BRAF mutation and I was classed as very high risk of a recurrence at that point onwards. 

That was November 2018 and I finished the treatment the following November. Every 3 month I would have a CT scan to check for any recurrence and all had been well until my scans this past July. There was a cancellation and then a further delay I getting the results due to Covid issues but when I did get them I was told there were 'a couple of enloageed lymph nodes, this time under your left arm'. This time around I knew the protocol like the back of my hand and had already committed to myself that 'yea it's going to be bloody melanoma agajn'. I tried to bargain with myself as to how bad it may be. 'Maybe just a few nodes' etc. This time, as well as a biopsy, they wanted a PET scan, which I'd not had before. For some reason this shook me. I think id just convinced that it would show melanoma everywhere, running rampant on my body. By time the appointment came, I'd just told myself 'I just want to know.. Come rain or shine I just want to know' and what was confirmed was the rather uncoordinated sounding diagnosis of 'its melanoma which has recurred under your left arm, left neck, right chest wall and near your right underarm' so basically, in about a dozen lymph nodes near-ish to my original chest mark from years ago. These new findings the Dr explained, may have been there for years but cancer cells can lay dormant for a long time. Either way, I felt lucky that it had not gone any further.

At the same time as being diagnosed, I've also accepted a place back into University as an Adult Nursing student and with the support of my wide and clinical team, have not let this stop those plans. I was told that I could try surgery but it would begin to get a bit like a 'catch the pigeon' scenerio and unless I want to resemble a patchwork quilt (which I'm not opposed to at this point) then it was time to try what he regards as the big guns in the treatments of melanoma, immunotherapy.

I had my first cycle two weeks ago, ipimuliave and nivolumab or ipi nivo for short, as I definitely butchered those names! I'm hoping I'll be one of the lucky ones and possible get a good result, maybe even a complete repose, we'll see. In any case, through this whole time, I've had the good fortune to never actually come across as being particularly unwell, or indeed, actually feeling particularly unwell. There are some days where I wish that perhaps way back when we were dealing with early stage melanoma, I'd been given a scan then or a sentinel node biopsy, would it have made things different but that fact is that ifs and buts don't really help. What helps it continuing to live as best you can and I've seen so many people who have inspired me. On here, on TV or in day to day life. People live with their disease, they don't let it dictate them. Years ago when I thought about posting on here I was fixated with this idea of curing my disease, which of course would be lovely but the reality is, if you can keep pushing, keep living the life you want I love, then you are already winning.

I will update you on how this treatment goes. Immunotherapy is often a slow and steady treatment but if that generates a long term response then I shall not be complaining. 

If you have read this until the end then you deserve a medal, I promise not all my posts will be mini biographies. But I'm happy to have told my melanoma story. In the meantime, I have a hell of a lot to learn with this nursing course but I'm throughly loving taking a risk and pursuing something new. 

Speak soon,

Kieron :)