Tuesday, 20 August 2013

Algy's Demise - Ten Days in and feeling like Sierra Hotel India Tango..

Just had my 10th dose of protons/photons/electrons/whatever about an hour and a half ago and am currently taking advantage of the free WiFi in a Pret a Manger in South Kensington. Nearly all of the commercial places I haunt in these parts of London are subscribed to The Cloud, which I registered with some time ago as a train goer. Quite handy but you have to give it time to crank up and not make the mistake of having your O2 dongle plugged in at the same time.

I've also had another wobble and started whining on Twitter this past Sunday, probably from doing too much again with the result and getting overtired which instantly drives me in to a spiral of depression more quickly than Algy can. This was brought on by my trying to conquer Oxford Street earlier on that day. I didn't get up in time to go to the local branch of my church opposite the disabled entrance of the Natural History Museum, as they start their meetings at 9am and there is no way I am capable of waking up at 7am to get there! So off to Oxford Street I went in the afternoon, as I thought I would have a go as revenge for the awful time trying to get up there last year on a cold October evening of which there was no way I could do without a carer and will still need one for evenings I think.

It wasn't too bad, albeit crowded  but not as packed as last year. At least I could see who was coming at me and only had to use stick once when a crowd of iPod ear clogged chatting humans with their offspring on skateboards threatened to crash into me.  As a result though I have done too much which is having consequences plus I think the effects of radiotherapy are just about starting to kick in with fatigue.

At least now when this happens I can recognise it for what it is. I have a group of very good friends on Twitter (you all know who you are @gillyh1, @Science_Fan to mention a couple and everyone else there!) one of whom was very patient with me Sunday evening as I unloaded and whinged big time to her via the direct message facility on Twitter. I am also meant to be on a 'Twitter break' which for me means a few re-tweets and the odd tweet if very important. I am also avoiding timelines I can get very emotional about for no good or rational reason. But then I can *not* completely stay away from the place which is not really a good thing!

Anyway, I digress again.

Yesterday, even though I felt (and still do feel to a certain extent) pants, I had the delight to meet up with two exceptional ladies who run a radio show on Radio Croydon, an internet based radio station set up to serve the community after the riots there a while back.

Eileen and Claire Bullimore outside Cafe Roma near the Royal Marsen in Chelsea

Claire Bullimore is a very bright and beautiful lass who sadly was also affected by a 'benign' brain tumour and again as I hear about all too often, her years of migranes etc were pretty much overlooked by her GP, who put it down to 'hormones'. Of course no one looked at other potential reasons for these headaches, plus Claire's eyesight began to be affected. The person who picked up on this was her optician whom Claire had asked to check, and found changes at the back of her left eye that signified a tumour affecting the region of the brain where the optic nerves pass though.

Again, here's another person whose persistent symptoms were continously overlooked, then ended up being referred as an emergency for an MRI scan with surgery following closely after. Her mother Eileen is equally inspiring and helps Claire with her activities and supports her as only a mother can :) They are both on twitter as @BrainTumourAunty and @pillionqueen as well as having pages on Facebook under Claire's name and 'Aunty M Brain Tumours'.

Claire is now affected by a condition called 'hemipoplia' post surgery where she can only see the left half of her field of vision in each eye, which is the best was to describe it. Also her operation has left her with cognitive problems with memory. concentration and thought processes, plus of course the inevidible fatigue common to those of us with tumours.

Yet the two of them run a fantastic radio program called   It has now been extended to two hours frrom 12 midday to 2pm and can be picked up over the internet on Thursdays with interesting chats, topics, guests, music and has an interactive chat board via the Croydon radio website or via Twitter where tweets are out tweets during the program. Thursdays on Twitter is 'Brain Tumour Thursday' where facts, fugures, awareness etc are tweeted by those of us involved with brain tumours, hopefully out to the general public.

The two wanted to meet up with me and take an interview but did so as a friendly chat, and recording snippets. Apparently my dulcit tones will be broadcast over the net on Thursday 29th, so tune in. If you miss the program you can listen to the podcast later in the day. Croydon Radio is an internet based radio station which runs a small studio which is free to charities and community groups. More about Croydon Radio can be found here  http://croydonradio.com/ and are @CroydonRadio on Twitter.

After having a lovely chat with the ladies, they came with me to my appointment and were allowed to see the machine Algy is being fried with and will be getting a photo of the Linac accelorator machines the Royal Marsden uses for their own use, as soon as I know where to send it! I will try to get across the river before I go back to Cornwall and take a peek at Croydon, and hopefully meeting up again with two very inspirational ladies who bring a lot of postive information about brain tumours to a wider audience.

And lets look at positives. I have mentioned this before. Right now I have calmed down but earlier this morning cursed the world, the universe, God and my mother as I failed miserably to hang out some washing as the line broke, and then had an impossible battle with a small clotheshorse in order to hang out two bed sheets and I haven't even put my smalls out to dry yet.

When I'm in a mood, I have to ride through it, afterwards suffer the embarrassment of the consequences then try to become a functioning adult again. I find some of the following helps.

* Tonnes of chocolate to get those endorphines going.
*Favorite music, weepy chick flick and chocolate.
*In my case, a sympathetic shoulder to cry on.
*Any food that isn't good for you, especially chocolate.
*A favorite photo or book and chocolate.
*Meeting up and communicating with exceptional people, some who have had similar experiences, some who have inspirational ideas/activities which help give ideas, hope and a sense you're not alone and completely insane. And chocolate. 
*Chatting with a grand dame of 84 on the No.49 at South Kensington who it turns out was Princess Diana's acupuncturist and counselor, who imparted wisdom which cheered me up no end. I might get her book 'The Voice of Silence'  (by Oonagh Shanley-Toffolo).
*Having a bloody good cry followed by chocolate.
*Avoiding at all costs almost twitter-stalking your favorite celebrity in order to get some comfort for your blues. I had to stop the needy habit of twitter friends asking for sympathy tweets, as nice as it is. The celeb in question is just that, a favourite entertainer, not my therapist!
*Cultivating a non judgemental insight - when you're able to - towards what you go through so you can learn from and manage it better. Followed by chocolate.
*When you can, set a small goal for each day. Mine is to try have a toddle and make a day of my radiotherapy visits, so I'm not just going in to town to be zapped and and head home straight afterwards, but can enjoy something from the day when I feel up to it. Plus not eat *quite* so much chocolate.
*IF YOU NEED TO,  DONT FEEL GUILTY ABOUT HAVING A REST AND TELLING EVERYONEONE TO SOD OFF. As much as we do need encouragement, sometimes we need time alone as well. Plus lots of chocolate.
*If you can and have the energy for such, go for walks or partake in any physical activity you find relaxing. Then stopping off along the way to get some chocolate.
*Seeking professional help if needed of course. I will be seeing the specialist nurse practitioner tomorrow and will tell her I am starting to get depressed. Part is Algy but some is also missing home and still trying too hard to find purpose. After which I'll be stopping off at Cafe Roma for a large cup of their hot chocolate.
 *The biggest help for me of course is writing this blog, and again having some very wondeful kind, loving and very patient family and friends.
*...and chocolate!

What helps you through the rough times? Do you want to them share here? It might help someone with their hassles as well.

Right, I'm off to self medicate with some Ben's Cookies (Chocolate centred of course) from across the road by the South Kensington Tube Station! 



6 comments:

  1. Hi there! glad to drop by your page and found these very interesting and informative stuff. Thanks for sharing, keep it up!
    - meningioma

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    1. Thank you for your kind comments. I will be adding more as time goes on XXXX

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  2. Hi, just found your blog after a google search. I've just been diagnosed with an inoperable meningioma on my brain stem, so I shall read your blogs with great interest. All the best for the rest of your treatment.
    http://karen-somewhereovertherainbow.blogspot.co.uk/

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    1. Hi m'dear. Sorry to be so late with a reply and even more sorry about your diagnosis. Mine is under the brain stem, compressing on the right side of the Pons, up towards the temporal lobe from the base of tyhe skull. It;s also inoperable but not so critical, which is why I am having radiotherapy only. Please keep in touch and if you are on Twitter I am @braintumourlady there, on Facebook as Heather Taylor-Nicholson. Much love XXX

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  3. Thank you so much for your kind words. It was wonderful to read and speak to you about your experience and your journey

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    1. Thank you for being such an inspiration too m'dear! I am so grateful you have let me be part of your show. Would love 2 do more again in the future if I can help. Keep up the good work & take care of yourself too XXXXX

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