Now I know this isn’t strictly topical for some of you, and I never thought I would say those words in my life. But I would be dead if it wasn’t for them and couldn’t surpass the opportunity to share my opinions on some local news. Just as a side note what I write in this blog is only my views on the situation!
Ok, so recently there has been a lot in the press about brain tumour patients not getting the treatment they “deserve.” Now don’t get me wrong, everyone should be granted treatment that could potentially help them, but certain treatments don’t always work.
I was particually interested interested about the Ashya King case (information on this can be found by typing his name into google). This is because I was also put up to have proton therapy, but was denied because of the risks. During this process I came to learn the pros and cons of proton compared to ordinary radiotherapy (which is now also very good) and this taught me that proton isn’t the end-all solution to brain tumours…far from it. But, of course, that wasn’t how the news played it. Pediatric proton therapy is only conducted and funded in LA and there is a rigorous sorting process. Clearly it was decided it would not help.
Give them their due, Southampton is very lax on communication between departments, and isn’t the softest at breaking bad news, but still, they still know best, most of the time, and pulling a young and ill child out of hospital and into europe ain’t that smart either. I would also like to add, all the articles are coming out that Ashya is cured and proton is a miracle seem to be a bit rose-tinted. I hate to burst your bubble but with brain tumours, your never free, whether you make it 1, 10, 20 or 50 years without a reoccurrence, there is always a chance.
Next is the more recent story of Alexander Elliot, may he rest in peace. My Mum even seems to think that he was in neuro at the same as me, when my reservoir was removed, and she bonded with his frustrated mother. Its very hard in the wards as most members of staff look at you as though you know nothing, that evrything they say is like the word of God, with me this has always been:
“You can’t give her that she will throw it up.” – MUM
“No, she definitely won’t this time.” – NURSE
Five minutes later we have to change the sheets again because guess what? Anyway back to my point, the Elliot story (link below) is another classic example. In many ways I completely understand the situation and agree but if I put my non-emotional head on I can see why this happened. Chemo is expensive and isn’t known to be tremendiously effective with breaching the brain barrier. The hospital won the right to cease treatment for a reason, if something isn’t working why continue it. Why not give a person their last few days free?
Also they are sueing, and at points of my life I have wanted to do so too. My parents had the perfect opportunity to do this with my first tumour, but they didn’t. I only asked them why recently but I can now see why they didn’t. What’s in the past, is in the past, money isn’t going to change that, especially taking it from an institution with a lack of staff and needs that money to futher other treatments.
I’m sorry today’s post has been a downer, this is only me blabbing on. But if you could please share, so everyone knows, the NHS saves lives too.