Thursday, 8 August 2013

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 cafĂ©, 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.

And a brief explanation of proton therapy.

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

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