Thursday, 11 July 2013

Low Down on My Consultation at the Royal Marsden on the 10th July 2013.

Six weeks in London! He'll have to clean up after the cats while I'm away!

Ok, here's the low down from my consultation at the Royal Marsden yesterday. Be prepared to get your anatomy and physiology text books out!

The bods at the RM wanted to check that I was happy to come up to London for treatment, which I wanted to do anyway, even if it meant camping out because they are *the* No. 1 cancer specialist hospital in the UK and right up there in world rankings. Plus because I have a friend who lives in Ladbrook Grove and who is letting me crash at her pad during treatment. This will save me the two hundred mile round trip I would otherwise have to undertake daily from Penzance to Plymouth in the winter!

Right, now the medical bits which I will do my best to translate in to English!

My tumour is quite close to some sensitive areas of the brain, such as the 'optic chiasma' where the optic nerves meet and then go to the eyes, and also quite close to some major blood vessels, including some biggies such as the Basilar ateries and veins, is growing under the temporal lobe and against the Pons (Science 101, Biology - look those up!). Also against the trigeminal nerve on the right side of my face where I right now I have a constant tender spot on the top of my head, some loss of sensation around the lower right cheek, right nostril, mouth and this does flare up where I lose sensation all down the right side of my face or get quite painful pricking, although this can be another form of a seizure.

It is possibly a major cause of why I still get protracted vertigo - although not actually rubbing against the vestibular nerve which is where the sense of balance is transmitted from the middle ear to the brain, but the increased pressure can effect it enough that the cells where the electrical impulses pass can be affected upsetting the 'circuit' so to speak and this can be permanent.

The biggest problem is Algy is also quite close to the brain stem, and that is an area you *don't* want to mess with for the following reasons.

Because of this, the 'short' treatment of 8 bursts would be too risky as the level of radiation would be higher and could affect those areas of the brain as well as Algy himself. So the only real option is to go for the full 30 bursts where smaller dose of radiation can be applied a bit of a time, so reduce the risk of irradiating those other areas too.

There will be side effects of course and long term medical problems that can result. The main one being that Algy will swell up for a while so my symptoms will become worse such as increased fatigue, plus could also include nausea and increased seizures. My hair will be affected and will get some bald patches plus 'sunburn' type areas on my scalp. Some of it may grow back or I could arrange my hair that the patches will could be hidden, however if they are too numerous, personally I'll be adopting the 'Sinead O'Connor' or 'Gi Jane' look instead. I've done 'bald' before or will have a close crop as I don't want any 'comb over' looks which to me is worse! Also there might be some cognitive deficits but as I get those one way or another, I doubt if anyone will notice! ;-)

Long term, there are increased risks of having a stroke, it could effect the pituitary gland and I will have to be checked annually for that and my vision. I already have retinal photos done with my optician so any changes can be picked up. Also I have discovered if in photos you see anyone with a 'white eye' instead of a 'red eye' effect from flash photography, that could be a sign that something 'orrible could be going on as it affects the retinas! So will have to be monitored for all the above for at least a decade or so. There also maybe sudden episodes of severe fatigue which can occur.

It will take around four years or longer to see whether Algy has stopped growing, which is the main intent of treatment, and about 50% of tumours shrink, but it could be 10 - 20 years before this is evident! So will be having annual MRI's for the next few years or so at least. Of course there is a risk algy could grow back and a 2% risk over 10 years that I could develop a malignant brain tumour. 

I will be fitted with a mask rather than having a cage bolted to my head, which I am rather pleased about although it will mean having to have a mold taken of the upper half of my body, from which a mask will be made up, and will be used to secure my head and shouders so I can't move during the procedure and risk the bolts hitting the wrong part of the brain.

I won't glow in the dark nor will I turn green and rip my shirt off! That's it in a nutshell m'dears.

Poor Dave wanting to go to the pub! Waiting for the Consultant.

The actual dates hopefully will be soon but I'll find out in the next few days.

1 comment:

  1. Hello to you and good luck with your treatment. I had 6 weeks of targeted radiosurgery in 2009 (not on Saturdays or the Sabbath though!) and its really a doddle compared to all the worrying and thinking prior! Got my fingers ready to cross for you and keep us posted ,,,,,,,,


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