Friday, 27 September 2013

Algy's Demise - I Got Stoned and I Missed It...

It's been a few days since Dave and I returned to Penzance. And Boy! They were *not* joking about the side effects, which seemed to get worse a day after radiotherapy was completed.
Dave at the Crown next to the Royal Marsden Hospital

We had a good few days together in London as Dave needed a break too. I've yet to post photos up but the joke will be for every place we visited there will be a piccy of Dave sat in a pub! I think he has seen more of London in the last six days of our stay than he has in a lifetime. Also having to take the bus because I cannot tolerate the underground crowds etc, he has noticed the architecture of buildings, places and whatnot and has enjoyed that immensely. We did take the underground once to an event up in Islington that we very nearly didn't get to because of repairs etc and of course, Algy decided to show his displeasure and I ended up collapsing flat on my back with Dave suddenly understanding the importance of when I say 'I need to stop, eat and rest' I mean it and the consequences of not doing so. Poor man!

As much as I am delighted to be back home, I've have had a bit of a time adjusting and everything appears to be a little different. Of course  Penzance is hated by both County Council and Govt, so half the town is closed, yet there's a bloody great Sainsbury's being constructed where the heliport used to be, which was only supposed to have one floor and trees to obscure the view, that somehow has magically got past that restriction. I hate to say this but I'm getting the impression there'll be a notice going up on the Tesco's roundabout saying 'Penzance - Closed. Go Away. Nothing to See due to Apathy and Self Interest'.  That sounds cynical I know but it's been sad seeing what should be a vibrant coastal town turn in to a dust bowl surrounded by a supermarket hinterland.

Where I collapsed in Islington
I digress. Now, radiotherapy side effects. I was warned that fatigue and possible facial pain would occur as Algy is swelling a bit as the protons do their stuff through him and some surrounding areas. But almost immediately after stopping Dexamethasone - a steroid -  the vertigo is back with a vengeance! Also I still have a terrible craving for sweet food yet can't taste it well, my concentration has gone to pot and I feel spaced out all the time but at least the seizures haven't increased apart from the Islington incident. I find now I dare not leave the house on my own as I am definitely more wobbly on my feet, so need Dave or someone with me so I can grab their arm. That's always been a problem in narrow crowded areas but for a while, sadly, it will be a little worse.

The neuralgic pain is irritating but not screamingly bad. I take a stronger form of co-codamol (solpadine) which has 30mg of codiene with paracetamol rather than the 8mg you can get over the counter, and a drug called Amitriptyline at 25mg which is a sedative but also used to control neural pain. There is another drug commonly used called Carbamazepine but I am highly allergic to that, so will see my GP on Monday as I have only been given a few days worth of the Amitriptyline. I might ask for another type of neural pain killer called Gabapentin, but that's quite a strong drug. We'll see. In any event, the effects of the drugs I am taking now are leaving me ever so slightly stoned! *Hic* ;-)

Everyone will have a slightly different experience with their treatments, recoveries etc because again, it depends on what type tumour, radiotherapy, where and for how long etc. But common to all is fatigue of the type where you are bone weary and sluggish despite sleep, so I am prepared for that. However, I have decided that I must go out for a toddle each day when I can with Dave so I don't literally end up housebound.

I am also noting my behaviour and moods. As some of you know, I do get mood swings and this can be a problem and of course depression is an understandable reaction to all that is going on. There are mental health issues that can occur as a result of the stress from being ill and also physical ones too upon one's thought processes, especially if you're on the menopause! So you're all going to have to be patient but please, feel free to give me a kick up the pants as well because sometimes I need help to get things back into perspective.

Dave at the British Museum
With the above, the secret is I guess, is to get to know how you will be affected and be honest about it. Right now I'm ok while typing this but tomorrow it may be all doom and gloom. There will be swings and roundabouts but because I have been informed about this and have an idea what to expect, I think I will be able to manage this better and know when to seek help if it all gets a bit too much. I am also letting those around me know what could happen so they are prepared too as I already had a flare up over something a few weeks back which resulted in my ripping some family members a new one on Facebook! So now they know now for instance, to keep me in the picture about anything major going on. It was a misunderstanding for sure but also very poor communication on their part too which only got sorted after my Facebook outburst because someone saw my rants and realised trouble was afoot!

I would love to hear from others about their experiences with their treatments, and from family, friends and colleagues who know someone with a brain tumour. You can reply here, email me at or contact me via Facebook (I am Heather Taylor-Nicholson there) or via twitter where I am @braintumourlady.

Right, more drugs needed! Laters!

No comments:

Post a Comment

Please Feel Free to comment, but no flames or profanity!