Final blog update

Dear all,

I’ve not posted in a while. But that is not a cause for worries! I’ve been busy reading up on pharmacology in general.

We have met with our fine local doctor Per Bergström. We showed him a lot of pictures documenting the Dundee experience. He was very impressed and pleased by the good outcome!

Soon, however, this tough Laplander intends to “ride off in the sunset and live happily everafter”. That means that there will be no more blog updates. But this blog will remain out there in cyberspace, indexed by google, and thus continue to shed some light (!) on the various aspects of PDD and PDT for others who may embark on a similar journey.

It has already been noticed by media:

Brain tumour treatment is a world first
By Mark McLaughlin
A SWEDISH cancer patient has praised pioneering treatment he received in Dundee for a brain tumour after a worldwide search.

Just a few closing remarks before mounting that horse.

There has been tremendous support from so many new and old friends. Thank you all!

Did anything good come from this most uninvited course of events?

YES, we made many new friends, both in Scotland and around the world. For instance, a recent sister-in-arms found me from the blog; Niki “the muttering madwoman” writes fabulous musings on her blog. She also craves an audience, so go visit! Keep it up Niki!

This ordeal has also strengthened the bond to many old friends.

We also learned about novel very powerful and effective treatment modalities for brain tumors. I hope that this blog contributes to make them better known among brain tumor survivors and neurooncologists around the world. In particular, I hope the posted PDT documentation will rectify widespread misconceptions about side effects.

Note – I really had NO problems whatsoever!

I’ll also write a scientific paper from a patient’s perspective on the entire experience. In it I’ll try to condense my personal thoughts on how to best prepare for PDD assisted brain surgery and PDT.

Finally, being reminded of ones own mortality has a very sobering effect on the mind – things do come into perspective.

A few select parting quotes by my favourite mystic, Dr Ainslie Meares (from his collection “Thoughts”):

***

“How oft

Through tide and wind and circumstance

The traveller

Finds some unexpected haven”

***

***

“A little pebble is taken up,

Held, fingered, mused upon.

Has it not contributed

Something to our journey?”

***

***

“Some run for shelter,

The tree holds firm

And sways with the storm,

The eagle is borne higher and higher.”

***

***

Be well,

Anders (aka “Andrew Yassin”, my nom de guerre) January 10th, 2007

These are some pictures from the PDD and PDT treatments in Dundee, Scotland Dec 2006

Note: PDD is short for "Photo Dynamic Detection". PDT is short for "Photo Dynamic Therapy"


Picture 1
This is me directly after an injection of Photofrin on Dec 1st, 2006. Light sensitivity starts within minutes of drug injection. I was instructed to go for a "Greta Garbo look". My black woollen gloves don't show on this picture.

Picture 2
This is me being very ready for surgical action on Monday Dec 4th, 2006. The markers on my head are not cucumber slices - these are fiducial Navigational guides recorded on the pre-op MRI. You can also see my new MP3 player hanging around my neck. (Thankx bunches Enmark et al!)

Picture 3
This is me during PDT session #4 on Thursday Dec 7th, 2006. The laser is tuned in at 630nm, and I'm breathing deeply from my oxygen mask. Extra oxygen augments PDT treatment. And so do my carefully crafted acoustic tools - you can see the little headphone.

Picture 4
A close up showing the powerful light entering my brain. It actually shines out through my thick skull! I'm having a "bad hair day".

Picture 5
This is what it looks like. Note - I never could feel the presence of the catheter and balloon in my brain, though I could sometimes experience a "splashing" sensation when I moved my head too quickly. It's still the same bad-hair day.

Picture 6
Me updating this blog on Saturday Dec 9th, 2006. Location: the self catering flat in Broughty Ferry.

Back in Umeå!

Hi all!

So we did make it back to Umeå.

The trip was not very exciting. Everything went very smoothly, no fog in Amsterdam, no missed trains. Light sensitivity was never an issue either, so the ski mask stayed in the bag.

We'll upload a few pictures later on this week - we need to settle down first.

Amazingly, everything still seems to just go on as usual; the buses run, there were plenty of post and bills and other mundane stuff in the mailbox.

The thing is, everything that has happened during the last month and a half seems very surreal. So surely the world must have stopped. But that is apparently not the case.


Again, MANY THANKS to everybody giving moral support and encouragement on the blog, via email or SMS, by phone etc.

All for now,

Anders

Final post from Dundee

OK, yesterday we did actually go out. We decided to celebrate this very successful project, and had dinner at Indos. Great Indian food.

Afterwards we did the local pub, “The Royal Arch” and fraternized with inebriated Scotsmen.

My fancy headwear and black woollen gloves did arouse some amusement. “Arre you frrezing lad?” And upon explaining that we came from Lapland, the plot tightened and confusion was total.

Cheers to Mike from the Yacht club – May you always have the sun in your face and wind in your sails!


Today, we had pistachio ice cream at Visocchis in Broughty Ferry. Tonight we go back there for pasta and some Italian Primitivo (and also some Merlot from Sicily).

LIFE IS GOOD!
I'm just incredibly grateful that Mr Eljamel and his team has given me a second or even third shot at life! Thanks bunches!
Just three weeks ago, I solemnly told Nadia that I'd like my ashes to be spread in Hommarbäcken, Utifällan, Örträsk, Lapland, close to my ancestors. (The brook just behind our summer cottage that is documented in the blog archives)

Late - after dinner

We had a spectacular evening at Visocchis with great food and wine!
Afterwards we did return to The Royal Arch. It is a most classy establishment. They thoroughly understand how a "wee dram" is downed. There are actually paintings and maps in the ceiling!

Cheers,
Anders

Thursday - very soft activity

Today me and Mamme took a long walk. It was quite chilly but we did eventually find a good shop where we could secure some of the best liquid Scottish gold.

There is not much to do, nor do we really wish to, so tea and cookies are high on the agenda.

Tomorrow Nadia has arranged for us to have Pistachio ice cream and hot chocolate at Visocchis; the no1 ice cream parlour of the year (both Ireland and Scotland).

And tomorrow evening we'll have a splash at the Ferry inn. I'll skip the Haeggis and go for a straight fish'n chips with a local lager.

When we do come back to Umeå, we'll upload some pictures we have taken. Nothing gross or gory, just some documentation of events.


All for now,

Cheers,
Anders

Stitches out and his first real shower since last monday

Today Anders got his stitches taken out at Ninewells Hospital. Then we got a second chance to say goodbye to our friend Edwin at ward 23b, most of the wonderful staff and a BIG THANK YOU TO THEM ALL!!!

Right now its 18.34 Anders is resting after listening to his self-made meditative music. Margareta is having a bad cold so she is resting in her room drinking a hot drink (a mix of organic ginger and honey)!

So how am I? Honestly? I am exhausted and I am looking forward to coming home on Sunday. And so are Anders and Margareta too.


This I wrote to our friend Randy in the US the other day, right now it feels right to put it here on this blog too!

We are all juggling between hope and despair in time of difficulties. The important thing I believe is to remind us that all this is part of life. This morning I saw a swan couple in the sea outside my bedroom window. I ran out and walked along the beach beside them for about 20 minutes talking to them, telling them about Anders and what was going on. A crow came walking next to me after a while probably wondering what is she up too?! It was a wonderful experience in a very difficult time.

Take Care ALL in what ever you do!
Cheers, Nadia

My Dundee experience in short

Well, my Dundee experience starting around Dec 1st has indeed been most memorable.

This is Anders typing on Monday evening – sod the bright screen. Now a full week has passed since I woke up from surgery. Everything has gone according to plan, or even better!

In this post I’d like to highlight some of the key players I’ve had the opportunity to interact with in this endeavour. I will also try to share a few noteworthy details.

Key Players of The Dundee PDD/PDT neurosurgical staff

First of all – Mr Eljamel; wow – a quick no-nonsense reply to my initial inquiry about treatment. This set me off on a very intense research into everything related to PDT and PDD. The more I learnt the more I liked it.
Mr Eljamel exudes confidence and competence and oversees every aspect of the treatment. A solid rock.

Carol Goodman; wow this is THE BIG KAHUNA – the enthusiasm and knowledge shared over a long phone conversation proved invaluable! If I had any doubts about the actual procedures, she quickly made these go away.
My second PDT session was really spectacular; staff and patients hanging around marvelling at the fibre optics/laser show.
Carol – you should seriously consider selling popcorn to go with the fireworks when you start up the laser next time!

Sheila B. – also a wonderful laser lady. Thanx bunches for the early morning sessions spiked with extra oxygen!

Mr Mr Eljamels registrars – you guys have found a true master to learn from; congrats on that!

Mr Ibrahim (shuqran jezilen!)
Mr Iqbar – thanks, I guess I was your first PDD in Dundee!

Dr Julie Woods – queen of Photobiology; thanks for sharing insights on life in general and PDT/Photofrin in particular!

Prof Harry Moseley – most inspiring and flattering to be asked the day after surgery to contribute a paper from a patient’s perspective. Just give me a few weeks and I’ll see what I can do!

Dr Manthri – my “continuous presence” who so whole-heartedly accepted my ideas on using positive supporting statements during the general anaesthesia. I’ll get back to you with references and general theory – this is an area that needs to be pursued.

The fab nursing staff at ward 23B, under chief Ronald “Mr Happy” Buist (who so kindly drove us back to our den in Brought Ferry after Photofrin on Fri Dec 1st!)

In order encountered:
Kirsty J & Jane M; Kate M; Lois F and Scott P; Lesley W et al.

And last but not least, my fellow brothers in arms at the HUD, Mr Edvin S. and Mr John M. Interacting with you guys and with your families was most inspiring. I hope I may have contributed a little encouragement to you as well. Looking forward to staying in touch!

Some noteworthy details

First evening after surgery – I was feeling really good and decided to go off into a light trance (using sound tracks based on my patented acoustic tools). After a while “the machine that goes BING” did exactly that. And it kept on binging. Concerned nurses thought I was having respiratory problems with a way too low breath rate (3-4 per minute). But oxygen saturation remained at 100%.

I then heard KJ say, in a very strict and matter-of-fact-voice, “but you know he is really FAT, so this is perhaps normal for him”.

I recall snapping back with “Kirsty, I stand 180cm tall and I weigh 66 Kg; nobody ever thought I was really fat before”. It turned out that in Dundoonian there is little difference between fit and fat. I read in the journal afterwards: “respiratory rate satisfactory”.

Second morning – Nurse Anna had thrown away the prunes I had in a glass of water. “Last thing I ever expected to find, but it was pitch dark”. No journal entry.

Thursday morning – browsing through my journal, I found a note with big block letters saying “NOTE: STUFF IN CUPBOARD”

Yes indeed – I’m guilty as charged... Nadia and me thought we were so discreet that nobody would have noticed.

Anyway, being in Scotland and somewhat inspired by Mac Beth, I did occasionally resort to stirring up a witches brew most foul. Arguably, its only indication is for preventing swelling of the brain after surgery and PDT.

The Witches Brew Most Foul
Ca 2dl of hot water
2 heaped tablespoons of dried organic nettles
1+ heaped tablespoon of organic turmeric (“fake saffron”, rich in curcumin)
1 teaspoon of finely ground organic black pepper (for the piperine content to make the curcumin bio available)
1 teaspoon of finely ground organic ginger.

Stir and enjoy. If possible – always add sugar or honey to this. That helps a lot.

I used this sweet drink to down some caps of fish oil.
The combination is very potently anti-inflammatory. It does not, however, give the same high as do steroids.

Onwards from today

As I stated before – all my high expectations have been met and even surpassed. Now I’m simply in a resting phase eating a lot, strolling along the Tay river, doing some Qi-Gong. I'm also trying to internalize the entire experience.

Cheers,
Anders