It was inevitable – this rollercoaster ride wasn’t going to be easy.
We hit the first hurdle.
All buoyant about the Trial & our meeting with Val Macauly we start to focus on the Sentinel Lymph Node Biopsy. I decide to do this blog – so I can keep my family & everyone else up to date with the Trial & how I am feeling. My leg is almost healing…well almost!
A week after our meeting I call the Oxford team – the surgeon is on holiday we will call you next week. The following week we get a letter from Oxford summarising our discussion. It all seems straight forward…apart from 1 small addition to her letter – the fact that if the SLNB fails to “identify a node” I can’t go on the trial.
The next day she calls me up & we talk – apparently the Surgeon doesn’t think it is ethical or worth doing a SLNB because he doesn’t think it will pin point a node – he thinks that when he injects the dye it could go everywhere or nowhere. This is because the Wide Excision has taken away the lymph node paths – the channels that the cancer would have taken to get to a lymph node – the paths they want to watch the dye take.
I am astounded – I say “but a SLNB is not done at point of wide excision”….no she says – not in Gloucester – we would have done one here.
It is like being hit by a big fat sledgehammer once again.
There are options they are investigating – skipping past the SLNB and going straight for Lymph Node Removal – but they wouldn’t know which Lymph node cluster to take – do they assume it will have gone to my right armpit? The surgeon & team at Oxford cannot decide …….Another trial that is in London – but in order to be eligible I have to not only have an SLNB – but I have to have actual cancer in my lymph nodes – which means Metastasis – which I don’t want!
That was a week ago – Val has been on holiday since then. I am told they will be in touch once they know what can / can’t be done.
However it is potentially looking as though I might not be eligible for the trial because Sentinel Lymph Node Biopsies are not offered by the Gloucestershire NHS Trust. Because they don’t do them – they didn’t offer me one – the dermatologist that did my excision didn’t even mention it – nobody did – not one single person told me “hey if you wait until next week and transfer over to Bristol or Oxford” you can have this horrible Melenoma cut off your back & & have Sentinel Lymph Node Biopsy done at the same time & it WILL make a difference to your long term survival further down the line”.
Nobody gave me a choice – the acted for me based upon what they were prepared to offer me and it is potential going to cost me – me.
Why would it be so bad?….well even if I have the placebo not the drug on the Oxford Trial I would get monitored every 28 days – I would have MRI scans, internal examinations, blood tests & be visually scrutinised – I won’t get any of that if I don’t get to do the trial.
All I get is the 6 monthly Mole Mapping & 3 monthly visual examination from a Macmillan Dermatological nurse – in Gloucester .
I am angry.
But I will wait to find out the verdict soon.
In the meantime I have written all this & now you too are up to date – you know what I know about me. All future Blog posts will be current – as they happen.
I hope that you enjoy reading my Blog & that it helps you – whoever you are.