I decided I wasn’t going to do another blog post until I “knew” what was going on with me, with the trial, with everything Melanoma / Cancer in general.
I have been in a constant state of stress & limbo, unsure about what was in front of me, would what was going on in my Colon prevent me getting onto the trial, would I have another battle ahead as well as Melanoma?
The Good news is that there is no active Cancer in my colon.
Woop Woop!
A distraction was needed – a rest bite from all things Melanoma. The Mr & I tick off an item on my “Bucket list”…(I haven’t actually created said list yet – but if I had this would be on that list!)….we went skating at Somerset House with my Aunt & cousin.
It was perfect…we went at 5.30pm so it was getting dark, the Christmas lights were on everywhere and everything twinkled & sparkled. It was cold… we all wore woollies & gloves & it felt so seasonal. I was quite frankly giddy with excitement – perhaps more so because it was a surprise for the little people. It was the first time they had ever skated.( It was also The Mr’s first skate.) I had done a small amount many, many moons ago – enough to say I can skate in a straight line, but JaneTorvill I am not!
There was the odd wobble & scream & a couple of minor stumbles…until the little man panicked…..his little legs on skates flying everywhere.
My cousin & I managed to keep him upright & then I lost my balance.
My legs flew up & I came crashing down onto the ice onto the back on my head – bump.
The skating staff asked if I felt dizzy……well yes…..but that seems to be a natural state of being these days! On the plus side the stars I could see helped to add to the Christmas sparkles!
Good job I had already had the brain scan!
Back to the important stuff…..The Bad news has been drip fed to me via countless telephone calls back & forth with the trial team in Oxford.
Firstly, there were 6 polyps / flat lesions removed in total. The small print “criteria” for the trial eligibility requests no more than 3….cue negotiations on my behalf from the trial team as to what constitutes a polyp for the drug company….I thought this one was resolved based upon the fact that the small lesions, although strictly polyps, are not classic polyps but flat to the surface.
Of the 6 things they found – 4 were removed – one of these 4 was “pre-cancerous”. Of the 2 that remain inside me, both are pre-cancerous. These will be removed but apparently they don’t like to do more than 1 procedure like this every 3 months – so they can’t get them out quickly enough to meet the trial deadline.
Sure they could turn – but really how long is a piece of string – they could turn cancerous tomorrow or the next day – or in 5 years time – or 15….the point is we now know they are there & know they will be removed.
The problem is that they ARE there – and because they are pre-cancerous the drug company have been worried about me being on their trial just encase they “turn” whilst I am on their drug.
I have signed waivers already that say “I fully understand that this drug could be very likely to cause Basal Cell Cancer & Squamous Cell Skin Cancer but I still want to be on your trial”…so why not just create another waiver – I will sign it.
Today I was informed of the decision….I think I was expecting it….I am too great a risk for the drug company to take & they just cannot allow me to continue.
I know that it was silly to pin my hopes on a trial that had base line tests I might not get through, but I genuinely didn’t think there was any reason why I wouldn’t pass all tests with flying colours. I have fallen at the last hurdle and come crashing down to reality with a bump.
I know I should be grateful that all these polyps have been found – if it wasn’t for the base line tests I wouldn’t even know they were there. I know I should be pleased that the base line tests have shown that at this precise moment in time there is no Melanoma in me.
But I am gutted….totally at a loss…..I didn’t care about getting the drug or placebo…I cared about the tests, the vigilance, the feeling of complete trust, the security blanket of knowing that no matter what, I had them with me to help me stop this melanoma as soon as it shows it’s ugly face again.
Now….I join the ranks of the many scared people in this country who like me have Melanoma…where the opportunity has been given for it to spread….and I wait…and watch…..and hope.