Lee Jordan .org.uk

I was at hospital today to get results of biopsy on a mole. It’s fine, histology was clean. Atypical moles like this one are very hard to tell apart from actual melanoma and that’s where siascopy can really give an advantage as these moles raise enough doubt for a biopsy to take place. It was a mole I had scaned with the Siascope and the Siascan said it was fine, so the products work and should be used to save biposy of everything under the sun! Seriously I now have a big scar, just because the only tool my consultant had was a histology report.

However
Because yeah nothing is that simple! While having an all over check for enlarged lymph nodes (lumps) the consultant spent a lot of time on my right arm pit and in that general area. My face was one of shock when I was sent for a chest X-Ray. While in the X-Ray dept, dad asked if he could put the Germany game on. The TV was detuned and had no real signal, so he steped on a chair to fix it, the receptionist said he could have a scan if he fell off the chair.

Chest X-Ray’s basically are a way of checking that the lungs are ok. I’m encouraged because he said the nodes in my arm pit were fine so I suspect the scan is just to be safe. I hadn’t rated the one on my arm as being any kind of threat because it was much thinner than the one on my leg. It’s suprising to me that I still have my lymph nodes, but I really had thought my arm wouldn’t cause any problems.

This sucks big time, but it can keeping sucking big time as long as the scans are clear and so on. It should be fine and it’s good these scans do happen. I said from the start of this, it could always be worse, so I’m lucky it’s not and that is still true today.

I’m having my personal dot to dot game taken away!

I have to go back to hospital tommorrow very early in the morning to have mickey, thats a mole, removed. I actually told them I wasn’t worried just aware, but nope it’s coming out. In terms of it changing, well yes very slowly, patches are getting darker, some are getting lighter and there’s a white blob in the middle, which I read ages ago was an immune response ….. in this case probably not to cancer, I’m certain it won’t be. However I don’t trust my melanocytes and neither does anyone else given history, I think if you were me you’d want some type of rouge melanocyte shooting device. I expect to be back out again about 15:00 ish?

There is currently no real alternative to biopsy, I’ve obviously seen the future in Cambridge, with the SIAscope, but right now a histology report is the gold standard. I don’t even have a lot of moles and I really thought I’d moved on from the mole stage to consider other signs, so far my main focus has been and remains on lymph nodes and bumps under the skin.

Hospital is so boring.

A while ago I asked to be referred to the Skin Oncology Service at Selly Oak. I’ve just receieved a letter telling me I have been booked into the dermatology department at Selly Oak (ok it’s an actual factual skin clinic … at last, something I’ve not had thus far … I know tell me about it) but I quote the “quick and early diagnosis” clinic, *sigh*, it’s good that a clinic like that exists.

In the very same building there’s a skin oncology department that does nothing other than skin cancer, that’s where I wanna be, I’ve been there for an opinion on lymph nodes, how difficult can it be to get the right clinic?

I can’t apportion blame to the folks on the ground, I’ve read paper after paper saying how under resourced dermatology is let alone skin oncology, so I can fully understand. You get tossed into this very inadequate setup that even the doctors complain about and it sucks more than the cancer does, why should the expereince be this negative?

My last post of the night; I just wanted to update on everything to do with the progress of my skin cancer. Recently I’ve had a few people asking me how things are going.

My MRI came back clean and things are looking ever more stable. My next Apt is March 29th. It still remains a bad prognosis at a stage where guidelines say no treatment, like Immunotherapy should be given.The only real thing I’m dealing with is a kick down in my immune system, It has been a winter where I have been hit by a few major viral bugs, personally I know dealing with day to day life sometimes drains my energy.

Living the life of an international superstar (ok nine-five web designer, who can’t type but who has cracking musical tastes) doesn’t leave me with enough me time, I do get me time, like going to gigs and doing stuff at weekends, but my view on a career isn’t what it used to be, because of what has happened.

Moles can do grow into your skin, unseen over many years even decades while you are young, unless someone knows the signs it could go undetected, and that’s a vital message that could get this cancer detected early but it goes unheard in favour of sunscreen. Can’t reverse time to when we were kids, no matter what, but we can let younger people share the benefits of our expereince.

I have an appointment coming up to discuss the results of the MRI scan I had on my left calf. I was advised to get the results sooner rather than later as a consultant had said there was something showing on the scan that needed looking at, I just checked and the scan results are ready. It certainly beats waiting until the end of March to get them!

Apart from that I have some new music to ring in the new year, I want to build a really nice singer songwriter playlist for the summer months. I should also change the strings on my acoustic guitar and dust off the chord books

• Laura Veirs : Year of Meteors | Listen
• Jeff Hanson : Son | Listen

Plus a set of surround sound speakers and Bluetooth headphones for my PC are on the way as I feel I need to upgrade my listening expereince in here, way too flat and urm conventional at the moment. I’d also like to go to Summer Sundae this year in Leicester. Yes one of my new years resoultions, to enjoy the summer once again.

Back to the hospital yesterday for an MRI of my left calf, the site of my off the scale tumor. First time is always scary, because of the unknowns. The scan would last 20 minutes! Ended up lasting longer than that.

With the scan finished I was seen by the consultant who said there was something showing in the skin layer … *gulp*. On further investigation it could be the scar tissue, but even so I was advised to call in over Christmas to see if I can get seen in the next few weeks to talk about results.

What I have to do is not worry about it until I’m back in the hospital, so on with Christmas. Easier said, but I feel very confident that I’ll be ok. I read that even if your faith is dented, as long as you have hope you’ll get your faith back with time.

Latest checkup occured today, no signs of local spreading, but I noted a fatigue feeling in the leg that played host to the thick Nodular Melanoma that scares me. The fatigue has been there for a while, coming and going. An MRI scan is being talked of with an 8 week wait, and this is the point at which I say oh shit I thought nothing was wrong, that it was because I had pulled a muscle or something, I really didn’t expect that.

More than a year on, the journey isn’t what I thought it would be. I’d hyped myself up for massive life changes which have almost failed to come, so at this point in time I’m, producing a website to promote awareness of the warning signs of skin cancer, not just presenting the facts, but adding some personal expereince and opinion to the facts.

Make sure you all stay moleAware. Even if by the remotest chance something unexpected happens with my situation, at least I stood up and put out a resource that could help people know how to get skin cancer diagnosed early on. People know about the sun, spewing on about the same decade old facts won’t help people know if a mole needs looking at.

Stable and sound is the current standing, I still live with respect that the cancer could flick a switch and it would then get really complicated, hence why dealyed appointments aren’t helpfull, but it’s kinda hard to shout at people who acted very quickly to save your life.

Not much to report on the front line, to be honest for now Melanoma is letting me get on with things almost a year on. This time last year I was awaiting the very first biopsy results.

I have noticed a briuse appear very close to my less serious Melanoma site. Do you think I have the information, experience or opinion to know what that means? I’m forever changed. The whole thing has the potential of suddenly ending, without good reason or obvious symptoms. I don’t think the s**t has started hitting the fan with my cancer yet, as they say one year down four more to go.

The year has ticked by and stories such as that of Alex Lines have filled my screen, headlines of 23 year olds being killed by this cancer. I just have the urge to use my time to educate my peers. Young adults need to be told about skin cancer detection, because as children they already knew about prevention. I knew about prevention, somehow things aren’t fair. Young people aren’t aware of the danger signs, I wasn’t when I was a teenager, I wish I was.

Ah man this whole thing sucks big time, only now are details readily becoming availible, our understanding is shifting daily. A typical headline on this day on this topic : “Even redheads who avoid sun may be vulnerable to skin cancer”. Not only is is hard enough being hit by it, but it’s twice as hard when imagined it might not have been avoidable and not so obvious. I was one of the sensible ones, fully rejecting any blame aportioned to myself, a life smothered in sunscreen, fate all along, welcome to my sense of irony.

“Both UVA and UVB light caused a photochemical reaction with the redheads’ pigment, called pheo-melanin … People with red hair may get cancer from over-exposure to the sun even if they do not burn, according to new research in the United States” Source

Pleased to report that at my last Melanoma checkup everything seemed fine, no lumps or bumps, no moles looking out of character. I’m getting used to the strip search every 3 months, it could show up anywhere so there’s nothing to hide.

So I continue with my self checks, feeling the lymph nodes under my right arm pit and the left side of my groin. Living with NED (No Evidence of Disease) is kinda tough, because I know the cancer is there, yet I can’t feel, touch, taste or otherwise know of its precence and that’s the worst part about it. Knowing that I have one of the most agressive types of cancer isn’t the killer, it’s the not knowing what cancer cells are doing in there, where they are or which places they have marked to sight see.

The diagnosis hangs over me like a thunder cloud :
Stage IIc | Breslow 6mm | Nodular | 30% survival over 10 years