Wednesday 24 July 2013

Algy's Demise - The Journey Begins...

Ok folks, it's crunch time!!!!  The journey to Algy getting his comeuppance has started! Over the next few weeks, I hope to document my radiotherapy, what's involved and the effects of being away from home as the treatment will be taking place in the radiotherapy department of the Royal Marsden Hospital, Chelsea. I hope it will be informative and helpful but also I will warn you, will probably be emotional in parts as well.

22nd July 2013 (Btw at 4.24pm while I was being scanned, someone had given birth to a future king at a hospital in Paddington!)


Today, I had my radiotherapy planning scans, to accurately locate Algy and have a mask fitted which will bw worn each time I have a dose of protons fired from a linear accelerator in to the heart of the Algy Death Star! 

Heading into The Royal Marsden Hospital on the Fulham Road in Chelsea.


It was hard work getting to the hospital from my friend’s place in Ladbroke Grove to Onslow Square next to that part of Fulham Road where the Royal Marsden is located.  One had to take the 28 from Westbourne Park Tube to Kensington High Street Tube, cross over and get the 49 out towards Hyde Park corner and get off at Onslow Park. Except no one told me *which* 49 I had to get! I had climbed aboard the Hyde Park bus, eralised it was not going where it was supposed to go and ended up walking quite a distance from the Royal Albert Hall to South Kensington Tube. I realised it was the 49 with *CLAPHAM* on the front I was supposed to catch! Never mind, I got there in one piece and splurged on a ‘Pret-a- Manger’ lunch.  At least I could get my bearings here and made my way to the hospital for blood tests. 

Now the Royal Marsden is a world renowned hospital for the treatment of cancers and that also includes brain tumours, including my type of ‘benign’ tumour that can still be fatal, even if low grade.
I arrived at 1.45 pm for some blood to be taken to check my kidneys were up to having a contrast shoved through them.  I had to wait a short while as one has to take a ticket and wait for that numb to be called, which I think is a good idea.  My blood forms were there and I also consented to a trainee phlebotomist to have a go. She was a Registered Nurse who was specialising in this. The training at the RM for venepuncture is a little different as the staff there have to try to preserve fragile veins that have been subjected to chemotherapy. For general info if you speak medical or curious about sticking needles in to veins for medical reasons, here's a link to the University of Glasgow training pack for medical students http://www.gla.ac.uk/media/media_109800_en.pdf

After this I went off for a walk and bought a nice bracelet made from Swarovski crystal that has two small sparkly skulls from the local Butler & Wilson shop nearby. Ok a bit creepy but this is both symbolic of my ‘head’ journey and the potential demise of Algy to a non-growing lump, as well of course being a 'Pirate from Penzance' ;-)

A somewhat creepy but appropriate symbol for me.


I returned at 3.15pm to go through the mask fitting process and the two scans needed to check everything was in place and to plan my radiotherapy treatment. It took some time to find the correct registration desk and get checked in.  While I was in the queue, the department called me on my mobile phone saying they were waiting for me! My terse reply of “I’m in reception trying to get booked in” had them hang up quickly and it wasn’t too long before one of the department nurses found me, proceeded to check my details and people, they do this on an electronic pad which the nurse told me took longer than actually ticking paper! Then I was eventually sent to the ‘Gamma Knife’ dept to complete the mask fitting.

I was a bit flustered by this point, as time was marching on and I was anxious about the possibility of missing one of the scans.  They were doing all of them at once that day to save me having to come up from Penzance three times  to get this done, but it did cause some confusion.  Sadly for me, I was hoping to have 1 or 2 pix taken of the mask fitting while it was being done, but the Royal Marsden no longer allows pictures to be taken of any process now, I asked why but the nurse specialist shrugged his shoulders, he didn’t know either.  So any images in this blog will be fished from the ‘net plus any I *might* be able to smuggle out!

The mask fitting process is a bit weird, not painful but for those who suffer from claustrophobia, it can be a bit confining.  The mask is often referred to a thermoplastic radiotherapy mask of which mine is made from a Perspex type material.  This type of mask comes in many sizes and shapes depending on which part of the body is going to be irradiated. 




It's a flat sheet is first soaked for a few minutes in hot water and this one was applied over my face. There is a small hole that is stretched to open exposing my nostrils and mouth.  I lay on a bench and my head was placed in a frame so I couldn’t move and the mask placed and moulded over my face. While the mask was setting on my face (It hardens and shrinks a little bit so be prepared for that) some Michael Buble was played to help me relax. the RM has quite a selection of music!

Yep, Jonathan Pope it is then, but my blue mask is better fitting!

It was quite a sensation as the two technicians gently pressed and marked around the areas where the radiation would be targeted.  Also in my case, marker ‘bobbles’ similar to those used on suits for CGI effects are placed to aid targeting as my head will come up as a CGI on a computer.  To that end, I have decided to name my mask ‘Jonathan Pope’ after Ben Miller’s character from ‘Moving Wallpaper’ where he has to wear a CGI body suit with hilarious results.


After this it was time to shoot back up to the CT Scanner department and have the mask placed over my face for as scan to check it’s in the right place for the zapping.  The machine they had was a GE Lightspeed Scanner and the Techie bits I’ll post as a pdf somewhere for you to look at, but essentially it’s not just to locate Algy but to also start building up a 2 – 3D image of him. Again I lay on the table and my head rested into a frame where the mask was secured when placed over my face.

The GE Lighspeed CT Scanner


The procedure isn’t painful but the mask is very close fitting and because I was a bit sweaty, I wriggled my face a bit to get comfortable so my skin would stop pulling. Apart from that it wasn’t bad.  When you lie on the table again, your head is placed in a frame to which the mask is attached, and to make you more comfortable your legs are usually supported by a shaped pillow.  The scan itself takes about 10-15 minutes.  The staff guides you through the process and usually you are given a call bell if you need attention.

After this is was then back down to the basement to the radiology department where the MRI scanning rooms are. I was met by a nice young technician, who checked I had no metal including any in clothing. 

From previous MRI scans I have learned to avoid wearing anything with any metal bits, so usually only have to remove my bra otherwise it’s the dreaded hospital gown with the non fitting back that is ‘De Rigeur’ for hospitals.  Also the staff go through a check list with you about any metal in the body, to check whether you have undergone any recent surgery or have stents in etc. Remember, MRI stands for ‘Magnetic Resonating Imagery’ so one does not want one’s metal dentures and watch suddenly flying off and hitting the chamber wall!

I has brought a couple of buds along for the trip! Well random! Isn't it! Isn't it Though! Please note the dressings on both arms, it does *not* mean I have become an IV drug abuser!

MRI’s by any accounts can be noisy and claustrophobic as your body is passed in to a narrow chamber inside the machine and they can be loud too.  The ones in Truro and Derriford are literally old clunkers, not only with the buzzing of the scanner but also the loud rattle of the magnet spinning around as well! It can take up to 45 minutes depending on what is being scanned and as to whether a scan with a contrast dye is needed. I was given ear plugs to mute the sound of the scanner and also most departments will offer headphones with piped music from their radio or CD collection, or you can take in tour own CD. Mind you, the volume is never loud enough to drown out the scanner!

The contrast dye is made up of something called Gadolinium (Doratem®), a material which is visible to magnetic scanners. This is needed to pick up various tissues which may not be visible under a routine scan which shows up Algy quite well and is given intravenously. It was for this I had my bloods checked earlier to ensure my kidneys would be up to excreting this over the next couple of days as it remains in the body for about 24 hours. After waiting for a while so that the gadolinium had time to circulate around my body. Here's a wiki on the stuff for those who speak chemical as well as medical. http://en.wikipedia.org/wiki/Gadolinium and and general info on medical usage  http://www.ajnr.org/content/31/6/981.full

The MRI scan is used for diagnosis, clinical observation and in this case, again as part of my treatment planning.  I was quite surprised at how quiet the machine at the RM was – a Siemens Magnatom Aere – which is quite new and takes a better computerised image.

The Siemens Magnetom-Aera MRI scanner.


The scan took about fifteen minutes as only the contrast scan would be needed. When it was done, I was taken back to my changing room and given some time to recover my wits! After this I left, took some pix of the exterior of the hospital and headed back to the South Kensington tube station area where I had a salmon teriaki for £5.65 at a place called Wasabi and it was bloody delicious! The only downside, I was approached by a bloke trying to sell me a battered magazine and asking for money so he could eat, yet he was smoking a ciggie from a packet that cost more than I paid for my meal. My 'no' was met with his calling me a twat.

The journey back to Ladbroke Grove was no less truamatic as again I got on the right bus (The 28 from Kensington High Street - forgot to cross over the road!) but headed in the wrong direction and was almost at Wandsworth before I realised that for the second time that day, I was heading off in the wrong direction so had to change buses again! Plus it being the hottest day of the year, I was pretty shattered when I got back to my digs and to cap that, O2 mobile dongles to NOT get good signals in Ladbroke Grove and spent a frustrating evening trying to use the internet on something that was slower than a tax refund!

I am back in Penzance now but have to prepare for the fact I'll be away from home for six weeks which will kill me, but it's gotta be done. Will add more when the shooting match actually starts! Watch this space!





6 comments:

  1. Thanks for your detailed description. I was especially interested after having had an MRI just last week. Also interested about the gadolinium. I had meant to ask the MRI tech whether the dye would do anything interesting like make my pee turn purple, but I forgot.

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  2. MArg - Gadolinium is a colourless chemical element. Your pee will stay the same colour - sorry.

    Interesting blog madam cod - and it will be really useful for anyone who has to have the same treatment as you.

    Rion

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  3. Thank you both for your comments!.

    Rion, thanks for adding about the Gadolinium, I forgot to add more detail but will pop a link in the main post for peeps to check.

    HeatherXXXX

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  4. Will be looking forward to reading your story as it goes along, wishing you all the best as you travel your quest to defeat Algy. You are an inspiration to others and a help to anyone with similar illnesses or anyone with worries of hospitals themselves. You make it all sound less scary somehow, I love the step by step accounts, thats how people should view it, one small step at a time. I should imagine it would be over whelming otherwise. Keep up that wonderful SoH of yours will be thinking of you along the way xx Sarah Woods xx

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  5. I know what I would do with that mask after you're finished with it - glue Swarovski crystals all over it! Major art object!

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    Replies
    1. What a splendid idea! Seriously, I might give that a go! XXX

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