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 braintumourthursdayradio  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! 

Algy's Demise - Of the No 28 and 49 Buses, Cafe Roma and Side Effects...

I've just had my seventh dose of protons today (15th August) and find this first week has gone quickly indeed. So nuch has happened too in the last seven days, from the very sad loss of a dear friend from peritoneal cancer to the joyous news today that my niece Bethan passed all her A Level exams with straight A's in her subjects. She will be starting out soon at Reading University to study speech therapy. From death to the promise of a new and exciting future, all in seven days.

Yet I feel I've been here an age as well, now honing the craft of bagging a seat on the No's 28 and 49 buses to and from Onslow Square and Kensington High Street where I have to change from one to another. Also I braved a trip to Camden 'Tahn' last weekend, having a womble about plus indulging in a fabulous choccy brownie and ice cream cake in the World's End Pub. Ok, so this is sounding like a travelogue and in a way it is. There's not much to report about Algy or radiotherapy at the moment except I have been treated on both machines at the RM, the Lederman and Joe Ford. Both doing the same job.

I have got in to a bit of a routine, one of which is a place you get to before the hospital on the other side of the road, called Cafe Roma, where I'll stop to have a hot chocolate drink and maybe a muffin. It's a classic little cafe where the owner will sit outside and chat to customers and friends, and will greet me when I come in. I notice it's frequented by other patients of both Marsden and Brompton, by the subtly disguised IV Cannulas and lines in their arms. So a good recommendation in my book!

I am also getting to be a bit of a dab hand with London's most classic above ground transport but still liable to miss my stops if there isn't the pleasantly recorded voice announcing which bus stop one is approaching available, but usually I only miss by one stop. Kensington High Street I've got my head around now, remembering I *must* cross the street to get my connection in either direction. Also when needing to get groceries,  I am *almost* able to use that bloody self checkout thing in the Tesco's Express there without setting off the alarm,  although why those damn machines won't always accept the Queen's currency I do not know! It is a somewhat discomforting experience to have everyone staring at you while the shop assitant is politely trying to figure out if you're stupid or trying to commit fraud!!

If there is anything to report about Algy. it's that I did have a bit of a fitlet one evening earlier in the week when a rush of emotion such as suddenly feeling jealous, angry then quite confused happened. I was on Twitter at the time having a wonderful chat with a few friends, but had to stop as I realised what I was experiencing was a precursor to a wobble. I spent the rest of the night feeling rotten and today, a couple of days later, am quite tired. I've also pulled a muscle in my left calf and have eaten far too many choccy based foods which makes me realise I urgently need to get back on track with my diet, else I will easily undo eighteen months of hard work of shedding five stone and I need to lose another five to get down to ten stone. However, one can still have a bit of a treat surely...!

Also the neuralgia is a little more noticable on the top of my head and the right side of my face prickles more than usual at times, but that might happen anyway so am not sure if it's really due to the radiotherapy at this time or not. But I am keeping the staff informed just in case.

So all in all, a bit dull for now.

Algy's Demise - On The Importance of Having Purpose

Back to 'The Office' this evening to start another 5 days of protons being fired through my head.

I've had a relaxing couple of days with having the 'weekend off '. Saturday I went up to Euston Station to meet an online friend who is a great fan of actor and TV presenter Alexander Armstrong, and who had the great joy of finally meeting him the previous week after the 'I Know Your Face' final on ITV. She is a lovely lady who is very forthright and also for the most part out of her house, wheel chair bound. She suffers from multiple sclerosis which makes my problems seem miniscule if you put it all in to perspective.

We had a lovely late lunch at a nearby indian vegetarian restaurant and 'fangirlied' over Alexander (who likes to be called Xander) Armstrong and of course the magnificent Ben Miller!

But that aside, she is also a very clever lady who was completing a PhD on issues about dying but had to give that up due to her illness. And it got me to thinking, what is the most devestating thing one could lose when they become disabled and lose their livelihood as a result?

To me, it's not been so much about losing my job but losing my sense of purpose, my sense of usefulness I guess. Now I am very lucky in the fact financially I can (just about) keep my home. At the beginning, when I sat in an office at the hospital I was working in at the time, I was on 'secondment' until I hopefully would recover enough to return to my duties - I was only meant to be there for a few weeks, but it stretched in to five months. Sadly I didn't get any better and was assessed by an Occupational Health Physio who wouldn't even consider observing me walking with my stick in adjoining corridor next to the offices where I worked, let alone on a busy medical ward!

It suddenly dawned on me at that point it was all over. My career at an end as I could no longer fulfil my contract of employment. All I could do was just sit there and sob my heart out, eventually having to leave work early that day as I had become so distressed. I was not only just losing my job, but also what had pretty much defined my existence for thirty two years of my life since I was eighteen. I can even tell you the date, time and place I first put on the uniform of a nursing auxiliary as we were called back then. It was 9am in Gloucester Royal Hospital, Ward 18 up on the ninth floor of the tower block, on the 29th June, 1979. I started my training at The School of Nursing, Treliske Hospital in Truro on the 9th March 1981 at 9am. I passed my State Finals qualifying as a Registered General Nurse as we were known back then on the 28th May, 1984. My career ended on the 22nd March 2011 at 5pm in the Medical Records Department at West Cornwall Hospital in Penzance and I have been foundering ever since.

My biggest fear back then, and still is to a certain extent, was about paying the mortgage and bills, and how in God's name was I going to be able to do that? Eventually after several battles over a period of time, financially we're just about breaking even on a small pension, contributions based Employment Support Allowance and Disability Living Allowance, none of which I would have now if it were not for the help and support of a dear friend who is also an Advocate for the Disabled.

Anyone faced with such a drastic change whether being made redundant due to economic climes, suddenly dismissed for whatever reason will probably tell you the same thing. The panic and drama indeed does give way to anger, fear, dispair, depression and disorientation as to what one can do to survive. In my case it was all of the above and my losing my sense of purpose, which I am still trying to get back.

The hardest thing I have to do now is to continue to *try( and get my sense of purpose back, to have something that will get me out of bed in the mornings.  I spend a *lot* of time on Twitter and Facebook, but before you decry that, they are my conduit to the world, a world I would otherwise have never known and in this last little while, a form of salvation in terms of having something to do and look forward too.

However, both have to be used with caution as they can become addictive and one has to remember all that one says in both social media, its out there in public, 'where no secrets are hid', as part of the weekly creed in the Church of England says.  I have had a public meltdown or two on Twitter, the worst being last year in October when I finally hit that brick wall of brick walls, alone in a small hotel room near Paddington Station. My obsessions, and desperate attempts at being relevant, busy, sociable, plus managing a heart stopping 8000 miles worth of travel in the previous two months finally hit me like a granite block being dropped from a great hight.

I won't go into the details, the ramblings were in this blog at one point, and I have deleted them as they are counter productive and as it was a rant from someone going through the very horrible experience of reactive depression, which can still bite if not careful. I have also discovered that if I get a sudden change in mood & become a bit childish and irrational, that is also a precursor to a seizure of the most odd sensation.

But I digress.

I think a sense of purpose, belonging and usefulness is an essential human need in nature, it is to know our place in the social groups, societies and hiearchies that exist. While humans can and do function alone, there's no worse feeling in my opinion, than being excluded, no matter what the reason. And for all the best will in the world, excluded you do become especially when it involves loss of employment, function, status and defintion. I was defined by my career for the best part of 32 years. I was happy with that as it gave me a sense of esteem as well as fulfilling my need to be needed.

Don't get me wrong, there was and still is the genuine desire to help, ease suffering if possble for that person's sake rather then my own and be there if I can. But I am also honest enough to say my career was also my ego, my 'status' if you will, my reason for being, and it gave me a sense self worth in a way I never had before. And the stupidest of things highlighted that loss, no longer would there be annual work do's, Chrismas parties or dinners to look forward or be invited to.

To see all of that disappearing as one approaches the edge of the cliff, unable to stop, indeed speeding up towards that loss, can be too much to take in all at once. Some will tell you 'stay positive','chin up' and that's not a bad sentiment if you have the energy to do that. But also I have found (and I am ashamed to say have done this) these things are as much to reassure the person giving those sentiments, rather than for those they are aimed at. I also get a little embarrassed when people tell me that I'm 'brave'. I am most certainly not that, there'll be no gongs for me on the new year and official birthday lists for courage!

Be careful with telling someone to be 'positive' as the very sentiment you want to use to instill optimism to the affected person, might actually make them feel worse; being positive takes energy and that's something a lot of ill people just cannot summon up at will. I certainly can't. On my lowest days (profanity warning here!) I just want the world and everyone in it to fuck off and leave me alone, yet I am also a very needy person at times, finding muself craving attention on occassions too (not with this blog I hasten to add!) which is embarassing and not healthy. So sorry folks, you'll just have to be patient, understanding, but do not be afraid to let me know I am going over the top as well.

The questions of what use am I? What can I do? What can I *not* do? What about my future? Will I get a life back or will I remain on everyone's 'pity party' list of invites (easy to do, gushing sympathy is a lot easier to live with than scorn!) and will I only ever be seen by what's growing in my head? Will I only ever want *to* be known now as the poor woman with a brain tumour?

You can dump the 'pity' bit and as said before I am by NO means couragious nor brave - I leave that to those who have  far worse challenges than I have with my wobbles and slight absence seizures - but I *do* have a big mouth so might as well put it to good use, and with that my sense of purpose is coming back slowly. I want to shout this from the roof tops. to make people aware that brain tumours, along with every other unsexy illness/disability is worthy of attention, of research, of concern, of knowledge, of all that and more. In short I guess I am getting my passion and activism chops back and can work towards contributing to others' sense of wellbeing and welfare again.

It's not much, this blog, and again, this isn't 'all about meeeee'. I just want to inform, to teach, to raise awareness, to share my experiences so others might get a taster of what is to come and yes, hopefully inspire those who read it. I want to highlight the difficulties and dangers with this disease with all it's 120 different tumours and 4 stages of agressiveness, but also to encourage a sense of hope, of dignity and empowerment. I will try to look at not so much what it is I cannot do in the future, but what it is I can (realistically) do and plan for. But for that I need help, which that sadly for people such as myself in these times of 'Austerity' is not aways forthcoming.

To sum up, personally for me, my greatest loss *has* been my sense of purpose and is the same for many others. So I am urgently trying to get that back. I am positive by nature and in the most part feel fine. But on my worst days when I am reminded of what has happened, the only thing I'll have left to fall back on *is* that sense of purpose and hope it will always be there.

Algy will always be in my head, but I hope over time he'll not always rule it.

Algy’s Demise - Rotating like a ‘2001 A Space Odyssey’ Spaceship to Strauss

Ok, yesterday I didn't do a very good job of writing about my first experience on ‘The Table’ so here’s a bit of both yesterday’s and today’s (8.8.2013)

The first thing you have to realise is of course, is about being fitted with and wearing the mask or maybe a metal frame. Depending on what type of radiotherapy you're having, one therapy called 'Gamma Knife' which is often called 'radio surgery' is a high strength one shot dose aimed at the tumour concerned that is suitable for that treatment, with the intent of knocking it dead in its tracts. 

Depending on this and what machine is used, a cage like helmet is fitted to the head by bolts which are secured tightly to the skin at points around the head and the 'cage' is then secured in a frame to keep the head absolutely still while the therapy is applied.  Stereo tactic radiotherapy I think uses the same or similar frame as the doses are given over a short period of time.  But at the Royal Marsden, with the protracted fractionated stereo-tactic radiotherapy I am having (usually 30 doses over six weeks) then a thermoplastic mask is used to secure the head.

Here's a link to the Royal Marsden pages about radiotherapy assessment with a video that takes you through the process.

http://www.royalmarsden.nhs.uk/diagnosis-treatment/treatment/pages/radiotherapy.aspx

The bench you lie on under the Linac machine is on a floor mount which rotates from side to side over about 180 degrees if needed, and the machine itself will rotate over the target area.  The machine takes two x-rays so as to line up and target the position, with two points crossing on a map.  This is to check again the head is in the right place and the target area is also worked out from the structure of the skull which also helps to accurately define the target.

The technician in the radiotherapy department was very kind to show me the movement of the bench and Linac, because obviously with my head encased in a plastic mask which also goes over my eyes, I can only feel the motion, not see what is moving.

Also she showed me the controls which are used for  both the Linac and the bench to rotate them to the desired position.  The Linac then fires the dose and will do so over several different angles so that all  of the affected area can be targeted over the desired period of time.  The bench can also be tilted up and down, and side to side, head or feet up/down although the positioning is very subtle.

The experience I had yesterday (7.8.2013),  initially I had found it initially difficult to get comfortable when the mask was placed over my head, as it is hot at the moment and my skin felt sticky but today was not so bad and I was more relaxed to the point of dozing off! As they put the mask on, I was advised ot tuck my chin down a little so the mask could be secured in to place.  My mask has no holes for the eyes and is very firm across the face, but there is an opening for my nostrils and mouth. The mask completely covers my head, down over the top of the head, the ears and down as far to my chin, the underside of my chin isn't covered.

It is very important from the outset if fitted with this type of mask, to let the staff know if you have problems with pain, and of course, claustrophobia or anything else as you are penned in very firmly.  I don’t usually get claustrophobia, but I have had to learn to relax a bit with this.  Of course if it gets too much, the staff will immediately stop everything and help you. It was stated quite firmly they do not want anyone to suffer unnecessarily.

I was helped up on to the bench and had to use a step ladder to do so (as I am a bit short!) and then laid down, with my head placed in a moulded head rest and my legs elevated a little over another moulded leg rest, to ensure the most comfortable position.  After this, the mask is clipped on to the table and checked that it is firmly in place.  The staff let you know that the bench is about to move and that you will hear the Linac rotate.  It was a strange sensation feeling the table rotating and rhen hearing the Linac do the same.

The term 'field' comes up a lot when the technicians are sorting out the machine, and is used to decribe the areas which the Linac will target. When it was set into position, I could hear a clicking like a camera shutter going off but louder and this is the actual firing of the dose of radiation to the target. I did hear a bit of whirring as it then repositioned and maybe a sensation of shadows as it moved, but this is normal.  In the background, some music was put on which I found soothing, and ironically for me being a science fiction fan, Strauss's 'Vienna Waltz' was playing as the machine moved, so I imagined I was in a Stanley Kubrick scifi movie...LOL!!

After about 20 mins, the mask was removed and it can be a little disorientating to find I was pointing in a completely different position than I started! And as said before today, the technician was very kind in showing me the range of movements the table and machine are placed.  There are various monitors in the room mounted on arms so the staff can read various data etc.  In the Royal Marsden sites, there are a number of machines of various types used for radiotherapy and vary because of the different range of treaments required.

A note to the wise though, if you still feel a bit disorientated afterwards, go and have a little sit down in the waiting area, there is water and you can make a hot drink if you wish until you feel ok.

Here's a link to the Royal Marsden web pages with photos of the types of machines used at the Royal Marsden sites, you can browse through the photos of the machines by clicking on the links below the images here.

http://www.royalmarsden.nhs.uk/consultants-teams-wards/clinical-services/radiotherapy/pages/treatment-machines.aspx

Here is a photo of the Lederman machine (Varian Clinic 2100C) that I will be treated with, bar three days due to the machine being serviced.

The Lederman machine, a Varian Clinac 2100C. Image copyright to The Royal Marsden

Next week for three days, I will also be treated with this machine named the Joe Ford machine which I think is a similar type to the Lederman.

The Joe Ford Machine. Image copyright to The Royal Marsden

 Here are some photos of the machines in various angles I have picked up from the web to give you a rough idea of what happens.

Note the mask on the patient's head. It is a similar type to mine.

One of the many postions the machine is set so to deliver the dose at the angles required.

Ok, that's enough for me for now.  Will try to look at some of the potential side effects of radiotherapy as was explained to me in my case later. Now I'm off to bleedin' bed! Feedback would be welcome by the way.

Algy's Demise - On Saying Goodbye, Protons and Hope.

Well I finally got underway yesterday evening to London for my six week long radiotherapy, due at The Royal Marsden Hospital in Chelsea and didn’t blub *too* much when saying goodbye to Dave in Penzance.  My brother and his family had also joined us in the afternoon, as they had flown in earlier from Liverpool to Newquay for a few days holiday.  It was lovely to see them and also nice for Dave to be able to spend a little time with Trevor, my baby brother and his family after I had left.

Lovely pix by Dave: With my brother Trevor, sis- in-Law Lowri, nephew John and niece Bethan.

The journey was uneventful, no six hour breakdowns in the wilds of Wilshire or anything like that and we were only ten minutes late getting into Paddington.  I had a fair amount of luggage with me and was contemplating how to get my massive suitcase from the top shelf off the luggage rack (I *hate* it when people move my luggage, especially on a shelf way over my head!) when a German family very kindly, not only got the accursed thing down but also helped me get my goods off the train, on to a trolley, in to a lift and up to the taxi rank.

Anyway, on to today.

The day didn’t start off too well since I have had news of a *dear friend who has peritoneal cancer, whose condition is getting worse and she is basically dying.  She has been moved to a hospice for end of life care and attention.  It was a heart wrenching conversation with her husband who told me he’s now finally accepted the fact she is terminally ill, a sympathetic but honest chat where all the walls tumble down and you're faced with the stark reality of losing a loved one.  I have known this woman for the best part of 30 years both as a colleague and friend, her husband is a friend of Dave's and they are both like family to us.  

What is worse is that my friend had recently been given the all clear from breast cancer, after being successfully treated for that a few years ago. But to me, she seemed to have been in decline ever since that time as well as having to retire early from her nursing career due to arthritis.  I will miss her badly when she departs this life and am only sorry I cannot say goodbye in person because I am pretty sure she will be gone before I return from London.  It’s a horrible irony that I am here getting treatment for a tumour in my head which should go well and yet my friend is dying from a cancer that can be fatal if not caught in time.  I just wonder why she waited so long to get help.

Back to Algy.

I had an easy journey in to town after sussing out the bus timetables and spent ages hanging around the South Kensington Tube Station area.  There’s a franchise opposite the station called Wasabi, a more sedate from of ‘YoSushi’ a Japanese eatery that offers sushi, sashimi and also ready cooked hot meals, some under a fiver if you eat in.  Rather than go hijack stuff off a conveyer belt with the risk of knocking everything else off on to the floor, here you can do a ‘Pret a Manger’ type thing and pick what you want, pre packaged off shelves. 

I headed back, down Onslow Street to Fulham Road where the Royal Marsden is and loitered around there until about 3pm, when my appointment was due, but actually it was for 3.30pm! Never mind, I went into their small café, had a drink of water and was then kindly pointed in the right direction of the Radiotherapy Department reception.  I started to chat with a gentleman who had just finished his treatment but was I called in by a very pleasant young lass who would be one of the four staff I will be seeing a lot of over the next few weeks.

Now a lot of people have no idea about or a very negative, limited knowledge about radiotherapy and what is involved.  Of course, it depends on what treatment is given, where and why.  No, it’s not all pain sailing and sometimes with unpleasant side effects, but not nearly as bad as it used to be.  What I want to *try* to do is take you through the process I am going though right now, which is the meat and potatoes of this blog. Of course, everyone’s experience and journey will be unique to their own situation but the routines and protocols that exist are similar.

I was taken into a private room where details were clarified, identification, did I understand what would happen and what was going to happen etc.  I mentioned I am recording a blog of my experience and found yet again the staff are happy about that, especially if it helps demystify the process a bit.

One of my questions was about the machines used to deliver the doses of radiation.  There are several types but basically are linear particle accelerators or ‘Linac’ for short.  That means they act by exiting certain particles (protons) with large electrical currents and aim them at a target, in this case Algy, my tumour with the intent of destroying the cells that make up the tumour.  This can be done at various levels of intensity (strength) depending on what needs to be treated.

Now let’s not beat about the bush, this is radiation we’re talking about, the stuff that leaked all over Chenobyl many years ago, but in this case, it is very much controlled and due to modern computerised technology can be targeted very accurately at an area without affecting too much of the surrounding healthy tissue.  It still has to pass through the healthy tissue to get there, but the intensity is maximised at the target in a precise area. Think of the rays that you see on science fiction programmes that are targeted, fired and then hit something.   Mr Spock then announces the Klingons have been neutralised.  Ok, it’s nowhere near as dramatic as that, but you get the general idea.

The problem sometimes in the past has been the level of radiation used and the accuracy of the targeting.  Back in the dark ages, the best anyone could work with were  x-rays plus whatever the surgeon would find at biopsy, but over the years medical imaging using various types of x-ray and other forms of imaging have been developed, are less harmful and invasive than surgery although the often two are needed with some diagnosis.  Nowadays people pretty much know about the availability of medical scanners and take that technology for granted.  For instance there are CT Scanners (used to be CAT scan) that stands for ‘Computerised Tomography’ which is a type of x-ray that can show a more clear 2D image of the body in greater detail.

The next on from that would be an MRI - Magnetic Resonating Image - scan which is powered of course by a huge magnet.  Anyone who has had an MRI scan will know of the somewhat claustrophobic tunnel you are placed in as the scanner passes around the body, as well as the loud clunking of the magnet as it spins!  However, there are newer versions which are quieter, one of which I highlighted in my last blog entry and the images more detailed in some cases.

There are other scanners such as PET scans etc and the most advanced now can render 3D images which are so realistic and detailed.  Some are even being used to accurately reveal the anatomy of the patient so the surgeon can know more precisely to aim his instruments etc so as to reduce again the risks to the surrounding tissues and to the patient by making the surgery more accurate and defined.  Both can be used with a contrast dye if needed - (I need that to reveal aspects of Algy which otherwise may not be entirely clearly visibe) - which highlights particular types of tissue which shows up the ailments more clearly on scanning.

All this helps with assessing and examining the body.  It has always been my contention that a good accurate diagnosis, with a scan done as early as possible, as any especially persistent symptoms is noted,  will go a long way to saving lives, thereby reducing the damage brain tumours can cause where possible.  It doesn’t always happen of course as sometimes symptoms are not always evident until the tumour can be quite advanced.  That cannot be helped and it can be purely the luck of the draw.

Anyway, for this treatment, I have had a number of MRI scans over the past few years to check on Algy’s progress as he is slow growing, the idea being to put off any radiotherapy until necessary when he reaches an optimum size so as not to bring on any side effects of treatment that could in theory do more damage. Sometimes a balance has to be struck between the progression of the disease and both the side effects and long term consequences of treatment, as well as the effectiveness of the treatment itself. 

After the interview and explanation of what was involved plus a little wait, I was shown to a room where one of two Linac machines are based and was impressed by the ‘space age’ feel of the room. I was helped up on to a table that is also part of the imaging programme that is used to do a final check on where everything is for the targeting of the beams to be passed through my head. This is being done over thirty days as Algy is situated quite close to the brain stem and stronger doses of raidtion would affect that very delecater part of the brain, so smaller, more frequent doses which can chip away is more preferable.

Once I was secured to the table by my now very tight and solid thermoplastic mask, the imaging check and treatment began, taking about twenty to thirty minutes or so to complete.  It was a weird experience and I will write about that in more detail later, maybe in another post.  It wasn’t painful, only a bit claustrophobic, but deep breaths and pretending I was in astronaut training helped.  I was a bit disorientated afterwards, so have taken note to go and sit quietly in the main waiting room tomorrow until I can get my bearings. 

I must change direction here for a bit and explain that I made the decision to get Algy zapped sooner rather than later,  because I am of an age and level of fitness that I can cope with this better now than when I get older and/or Algy gets bigger.  The brain will be ‘prematurely aged’ in part as a long term side effect but as I’ll be in my 60’s when this may happen, I don’t think I will miss out on much as I could get such symptoms naturally anyway. No one can predict the future only make the the best perparations for it as possible.  

This is where hope comes in, the hope that Algy will be contained, that I can enjoy a quality of life without further impact for a while.  As said before, a good and longstanding friend is dying as I type this and that breaks my heart. I know she invested in her future when she was treated for her breast cancer but sadly her life is being cut short from the metastases which have possibly resulted from that. However for a while she did enjoy a good quality of life and for that, I am grateful. 

Another hope is, of course that I will live for a good few more decades yet and that when my time does come, I can leave this world with some semblance of dignity.  Certainly of late there’s an underlying sense of urgency - I am not consciously aware of for most of the time - in what I do now, to get things done, to realise all that is on my bucket list, one of which is to *try* and remain useful, to learn, repent, and be a voice. Being an educator would be better of course, but only time will tell.

I have, as usual, gotten totally off topic and am getting tired so will leave the more detailed information about the Linac machines and what it feels like to ‘ride’ them for my next blog entry.  Here’s a link for the company who produce the machine I will be using this week, the Varian Clinac 2100C series.

http://www.varian.com/us/oncology/radiation_oncology/clinac/clinac_2100c.html

And a brief explanation of proton therapy.

http://www.varian.com/us/oncology/treatments/treatment_techniques/proton_therapy/

Will detail more tomorrow but for now, I need to get some sleep!

Algy's Demise - Emotions are Not Logical Captain.

I'm off to London tomorrow to start 30 days worth of radiotherapy to be administered over a six week period - 'fractionated stereotactic radiotherapy' for those who speak medical.  My brother and his family are flying in Newquay for a few days holiday, will come down to Penzance for a quick visit which has cheered me up somewhat, and has offered to take Dave and myself to the station when it's time. I can't promise I won't be blubbing when I get on the train though.

These past few days have been quite emotional.  I think this has been building up for a while and as someone has said, the wait has been long and now, it seems all of a sudden you’re off to get the very thing you have waited for, for so long.  

But it’s not the thought of having radiotherapy I find is leaving me a little tearful but the fact I will be separated from my husband Dave for the best part of six weeks. This from a woman who has no qualms in taking off to the wilds of Ontario or navigating lower Manhattan on foot for ten days or so at a time!  But that was for a break, a holiday.  This is different I guess, I have no choice but to do this, it’s a time when you would want to be close to those nearest to you for comfort.

London I have no qualms about getting around, now I’ve sorted out the bus routes to the Royal Marsden in Chelsea and have learned that one must check the actual destination of said bus else one can go MILES in the wrong direction!  It’s a city I have grown in confidence in getting about and is reasonably disabled friendly. 

Dave and I do not live in each other's pockets either. We spend a lot of time living in two different rooms, me here in the front room tapping away on my PC and Dave in the back room lying on his front on the floor watching the soaps, the History, Discovery and God channels.  

It’s an amicable arrangement born from a long and loving relationship, and we can both do what we enjoy without getting on each other's nerves, occasionally sticking our heads round the door when needed. As we live in a *tiny* two bed roomed terraced cottage, it’s as easy as pie to do. We have been together now for twenty seven years, almost the last twenty two of those married.  This will be the longest we have been apart, except when we got engaged and I took off to work near Cambridge at Papworth Hospital for three months back in 1987.

So maybe that’s it.  It’s the fact he won’t be in the next room or pottering about in the back designing and building yet another model beam engine, or fixing his motorcycle or be out in the back shed on his lathe, or at a nearby pub when I’m in London, he’ll be miles away.

Dave with Danny. Our other cat Sizzle was out.

Now considering some of you have spent months away from family in another country, I wonder what it is I have cause to whine about since Penzance is only three hundred and fifty odd miles away from Ladbroke Grove, and you can get there in under five hours (if you can afford the £160 return fare for that particular train that is) but it’s the physical distance between us in terms of emotional comfort and reassurance. Yes, we can phone, email and text, but it’s not the same as fighting over the duvet at three o clock in the morning, or yelling out of the back door dinner is ready or both of us waiting for the other to answer the phone or front door.

Dave has been very stoic and supportive, especially when he came to pick me up from church yesterday and found me in tears.  The church I attend is small and the congregation very close, everyone there wanted to say goodbye and wish me well, but what really caused the flood gates to be opened was when two young boys from the Sunday School class I teach, came up and gave their nutty SciFi mad teacher a hug and said they would miss me.  When that happened, it was definitely a ‘run into the ladies loos for a cry on the shoulder of a friend’ moment.

Six weeks is no time at all, the treatment I am undergoing isn’t painful and will only take about 30 minutes out of my day.  There will be no needles, no surgery,  just a bit of waiting time, a not so sexy hospital gown, lying on the table under a machine that looks like it’s been hijacked from a science fiction movie with my head encased in a rigid plastic mask secured to the treatment table (I get to keep the mask afterwards!).  No, the scariest part of all of this will be getting there by bus and remembering *not* to take the wrong turn into the Outpatient’s department.

It is the separation and the hard fact I just can’t get up and go home when I want, and Dave just can’t take off from his job nor abandon our cats to come up to London when he wants either.  It’s expensive and the train we can afford to catch takes a good six hours to get to Paddington.  I have good friends who will be able to pop into town as they live close to London, and I am sure if I feel up to it, I will find plenty to do (such as keeping on top of this blog!) that won’t cost the earth or break the bank in the city. But it won’t be quite the same.

I will miss Penzance, the sea, Dave snoring, our cats baying for food, Causeway Head, the harbour, all comforting and familiar.  There will be the traffic in London to face, the walking, the fear I will become ill on the bus, the negotiating around an unfamiliar area and it will happen that I will become tired, have increased seizures and maybe feel low as a result. All this is there in the background and he won’t be physically there to reassure me.

Maybe I am not quite as independent as I like to think I am and perhaps more scared than I care to admit after all.

 

Hair cut ready for Algy's frying.