The story: my father, who is only 69, was diagnosed with a grade 4 Glioblastoma Multiforme (GBM) brain tumour at the beginning of July. He had a seizure whilst driving on the A4 in London but had the presence of mind to stop the car before fainting. 2 miles up the road and he would have been on the motorway doing 80 mph rather than 40mph so for that fortune I have to be thankful. His tumour is inoperable as it is in the grey matter, very deep and behind the right eye.
He had a biopsy at the Royal Free Hospital in Hampstead in mid-July which was traumatic for us all, diagnosis was confirmed, and today he had his final dose of radiotherapy having undergone a 6 week course of radio. He managed 5 weeks of Temedol before his quality of life was reduced to there being no quality. For 5 weeks he was an out patient at the Royal Marsden in London, but has been in for the last 10 days.
He has suffered from severe nausea and vomiting to the point that he couldn't keep anything down. He would then be hospitalised, as a result we've had four ambulances and my mother and I have driven him in twice in the early morning. We are fortunate that we only live 15 minutes from the Marsden, and very lucky that he continued to pay health insurance all his life, but saved it for the 'big things' that might come along. The Marsden had a serious fire a few years ago so beds can be hard to come by.
The last 6 weeks have been nothing short of diabolical. As many others here have commented, GBM is so cruel as it reduces sufferers to shadows of their former selves, seemingly rather rapidly. My father has lost his independence - no car - and now seems to be losing part of his mind. I kid myself that this is down to the radio and chemo but the professor (consultant) rang last Friday to say that the confusion he is suffering could be brain damage. He didn't say what the likely cause could be. I know that a side effect of morphine is confusion but then having a raygun fired into your head for 6 weeks can't be too healthy either!
The side-effects of the medication are taking their toll. Dexamethasone may be the wonder drug for reducing brain inflammation but it is destroying his muscle mass. I may be a bit off here but it is my understanding that catabolic steroids are the opposite to anabolic steroids. Still, they are one of the most important pills, those and the anti falling out of bed pills (the anti fitting ones). He's also on Cyclizine, morphine sulphate, a stomach lining protecting one, 2 blood pressure ones, and more paracetemol than you can shake a stick at.
His condition has deteriorated in the last 10 days since he has been an in patient which has presented us with a catch 22. He is physically weakening and now needs, and frankly struggles, to walk with a stick where before he was wobbly but at least he could get about. His short-term memory has completely gone too which means that the time and date have no meaning to him. He is unable to use his email and is so easily muddled. This is one of the worst aspects as he has gone from being perceptive and intelligent to being unable to carry out any work at all. Yet he still trys to work and this leads him to being frustrated and cross, which he never was before, and then he's easily distracted. In the hospital there are no distractions but at home there are so many distractions in particular paperwork such as tying up his business interests because, let's face it, the survival rate for GBM G4 is basically nil. How one can do all this when one struggles to put a password into the PC rather beats me.
I'm trying to be philosophical about it all. There's no one to blame nor anything he could have done differently as we know that no one knows the causal factors for brain tumours. I don't believe that it's God's will, or cruel fate, or bad luck or any other human emotional response. I don't even know if being fair or not comes into it. It is sadly just one of those things.
I now realise that he's not going to make 80 which was my expected target age, and I'm not entirely convinced that he'll make the UK male average life expectancy. He's had a very good life. The tragedy is that my mother will be denied her husband and our family will suffer this great loss. He is also being denied this retirement that he had just set up.
I have hope that his current symptoms of confusion are as a result of the radio and treatment and not due to the tumour or brain damage as was suggested as a possibility by the consultant. I also know that he is receiving world class care and that nothing more can be done. It still seems unreal, and caring for him these last few months has been so very stressful that I can't really remember him before all this. I will one day, just not right now.
I'll end now because I've gone nearly a thousand words. I work in medical research and though I'm not medically minded myself I have friend who is a doctor at Great Ormond St and another who is an oncologist. I know the ramifications of GBM as do they and it helps to discuss it with them.
As a family will shall get through this, after all people die all the time. My brother is getting married this Saturday and that is going to be emotional and deeply shocking for my father's friends to see his state. However it will still be a celebration of life and the future.
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