Blueberry News

Final blog update

2007-01-10T11:42:00.000+01:00

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

2006-12-18T20:43:00.000+01:00

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!

2006-12-17T20:25:00.000+01:00

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

2006-12-15T17:25:00.000+01:00

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

2006-12-14T16:44:00.000+01:00

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

2006-12-13T20:12:00.000+01:00

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

2006-12-11T21:00:00.000+01:00

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

Homecoming and soon dinner with champagne!

2006-12-09T19:14:00.000+01:00

Hi ALL SUPPORTERS, this is Nadia writing, and Anders dictating in Dundonian. That is because of light sensitivity and exposure to Scottish.

The whole week has been quite memorable. Everything has gone according to plan. It is now very clear to me that knowledge is power. My treatment is Scotland has been very much individualized. For example, most of the operation theatre staff were involved in proclaiming specific positive suggestion during the various stages of the treatment, paving way for a speedy recovery and a successful outcome!

During surgery I was listening to the meditative sound tracks I created the day before leaving Umea. These included very specific instructions to myself and seem to be working beautifully!

For instance I was eating semi solid food “yoghurt, bananas” within hours of waking up from surgery! The nurses had never seen that before ; )

Dear ALL SUPPORTERS take care. Note all your little sms’s, emails and comments have been forwarded to me during the week. Very appreciated.

Cheers Anders

No more balloons in his brain

2006-12-08T11:44:00.000+01:00

Now its friday and very soon we are off to Ninewells Hospital. Today Anders will have his last PDT treatment. After that they will take out the baloon that have been in his head since monday. When that is done he’ll have a new MRI scan done. We are hoping to have him home in the apartment with us tomorrow – who knows I might get lucky and get him to come home with me even tonight ; )

Wei-Wei and all our other vistiors Anders sure looked like a Christmas tree yesterday when we saw his brain glowing and the laser wires glowing around his body!!!

Take care and THANK YOU for thinking of us!

Life

2006-12-06T22:26:00.000+01:00

Anders starting walking on his own today. He is not hocked to any equipment any longer. We took a short trip in the ward and down a corridor! He is tired and hopes that he will move from the high intensity ward to his own room tomorrow morning. He hopes he’ll be able to get some good long sleep then. Last night he had some leakage from his brain onto his pillow; he was so frightened but apparently it is something to be expected with this sort of treatment he is undergoing with a hole in his head we were told today.

Tomorrow we’ll take an early bus so that we can take some pictues of Anders while he is having his PDT treatment at 08.00. Anders was hoping I could put some pictures here but the computer does not have a USB port.

The important thing today is that Anders is with us!!!

Good Night ALL

/ Nadia and Margareta

PDT treatments are at 08.00

2006-12-06T12:11:00.000+01:00

Its now 11.10 here and soon we are off to be with Anders for a couple of hours. See how he is and helping out. The PDT treatment is being done in the morning at 08.00 and that’s when he wants to be alone to focus only on himself.

Tomorrow the plan is however that we go there in the morning to take some pictures of his head glowing! He wants to see how it looks like : )

A new MRI will be done on Friday.

Anders being a researcher in Physics’ it sometimes feels like he is on a conference when he starts talking with some of the staff about the technique they use etc.

Yesterday he was asked to write an account of his treatment from his perspective as a scientist and a patient for the journal Photodiagnosis and Photodynamic Therapy. Now there is Anders for you!

Take care all and be safe in what ever you do!

Best Regards from Nadia and Margareta

Anders is doing fine!!!

2006-12-04T22:34:00.000+01:00

Hi all, I have just returned from Anders and he is doing fine!!!

It has been a very long and worrying day for us all. It’s wonderful to have Anders with us wiggling his toes and have his lovely appetite to eat! Tomorrow morning he’ll have his second PDT treatment and we’ll book a time for a meeting with Mr.Eljamel the surgeon to tell us in details about Anders surgery!

Margareta went home before me and I stayed there about 2 more hours. I was planning on taking the buss home as she did before me but I was so exhausted so I took a cab. However when I came home there was no Margareta : (

I have just spoken to her on the mobile and as we are new in Dundee it’s easy to take the wrong bus and that is what have happened in her case. We both did that earlier today too. She is on her way home now after a long lonely adventure!

I left Anders with his headphones ready and he started listening to his own made meditation track to go to sleep. They’ll wake him up many times during the night to check his blood pressure, and that there is no swelling in the brain.

He is so touch by all of you who have contacted him in one way or another; it means so much to him that YOU care! And I feel the same way too!!!

Good Night everyone and take care!

Operation time

2006-12-02T11:52:00.000+01:00

The meeting with the medical staff at Ninewells Hospital yesterday was excellent!

Anders surgery is on Monday; 4th of December at 12.30 GMT (13.30 Swedish time).

The operation will take about 4 hours and he starts the preparation at 08.00 GMT (09.00 Swedish time). One of the things that will be done is a new MRI scan.

Bye for now – Nadia : )

Finally at the flat!

2006-11-30T18:49:00.000+01:00

It’s been a long day. The flight from Stockholm was delayed because of fog in Amsterdam. This meant our luggage did not have time enough to be transferred from the Stockholm flight to the Edinburgh flight. So we took the flight that went two hours later. It gave us time to eat and early lunch!

Now we are in our second home, its perfect for us! It can be made dark enough for Anders too, when he needs to keep away from direct light.

Now we are off to have a dinner together, and hopefully buy some more food to bring home too.

Tomorrow at 9.30 we’ll take a taxi to the Hospital to meet the team and Anders starts his treatment.

Thank you all for caring!

/ Nadia, Anders and Margareta (mamme!)

Flying out of Umeå manana

2006-11-29T01:53:00.000+01:00

Finally some pictures from our parallel universe in Utifällan.

Top picture:
Documentation of our garden project. 39 tons of gravel, 35 m3 of manure, 2 shovels.

Second picture:
This red house is our summer cottage. The old barn next to it will be renovated, starting next summer!

Third picture:
Nadia ; ) after a long and beautiful mountain hike at Balberget National park.

Bottom picture:
This is me (right) and our dear neighbour Sven-Emil locating our water pipe! October 2006 in Utifällan (Lapland).

Today has been a very long day. Anders has worked long hours creating some very specific relaxation soundtracks. Lutos is just starting his vacation with Miriam and Lisa (close friends to Polly, Nadias youngest sister)! All final flights details have been ironed out. So tomorrow its time to make a bold move and let the chips fall! (Anders is dictating here and I, Nadia, am just typing whatever he says).

The ski mask will stay off on the way back home. Otherwise I might get shot, according to our sources.

On Friday we’ll finally meet Sam Eljamel (my super surgeon) and his outstanding team!

Now its time to go to bed; please stay tuned and send positive thoughts!

Cheers and take care!

Anders and Nadia

Final plans!

2006-11-18T16:57:00.000+01:00

Finally, we have found ourselves a self catering flat in Dundee.

It’s located in the small township of Broughty Ferry (!). We are leaving Umeå on the 29th of November. Surgery preparations start on the Friday Dec 1st. This involves an injection of Photofrin which is a photoactive compound. From this time I'll be very light sensitive. Thus über-cool sunglasses AND some sort of ski-mask need to complement the fancy wide-brimmed hat I just found.

I almost got me a pair of long "bridal-gloves", but they were too small...

There may, however, be a limit to what I can put Nadia through. ;)

Fluorescence guided surgery takes place on the 4th of December. This is a modern state-of-the art technique where tumor tissue actually ligths up under the surgical microscope. Recent research shows that this leads to better results. (sounds kind of obvious to an ordinary peasant)

This is then followed by 5 courses of "PDT", photo dynamic therapy. These will be done Monday 4th through Friday 8th.

PDT selectively oxidizes any remaining tumor cells when a strong red (630nm) light source activates the Photofrin. This leads to instant tumor cell destruction and the start of a strong immune response to released antigens.

According to my sources, I'll literally glow like a red light bulb for an hour or so during each session. Nadia and mamme Margareta will document this. Perhaps photos will appear on the blog - clever remarks on "bright ideas", "light-headedness", "sparks of genius" will likely follow.

The plan is to be home in Umeå on the 17th of December.

Name of the Hospital is Ninewells Hospital:

- http://www.nhstayside.scot.nhs.uk/patients/hospital/ninewells.shtml

The accommodation that will be our second home is Broughty Ferry Accommodation:

- http://www.broughtysands.co.uk/accommodation.htm

All for now,

Anders & Nadia

What's with the Blueberries ?

2006-11-15T12:37:00.000+01:00

Hi all, this is Anders posting.

So, this is all rather inconvenient.

Being busy blowing the trumpet, preparing a garden (posts to come with some documentation on that!), doing research, looking forward to skiing at the first snowfall and living life to the full, just to be interrupted like this. Very INCONVENIENT indeed.

About the blueberryblog; why in English?
Well, my Dutch is crappy and many friends don't read Swedish very LARGE.

Why blueberries?
Well, these little berries are probably the single most nutritious and health promoting food on earth. I stocked up 50+ kilos in August. The day Nadia came up with the blog idea, I had eaten so many I was blue all over my little face. Ergo, blueberrynews!

Why Scotland?
Looking for options, this one stood out as very promising. It also appeals to the scientist in me - I've actually done research in the past on various parts of the proposed treatment.

All for now,

Cheers,
Anders

Dundee, Scotland

2006-11-13T14:57:00.000+01:00

Operation date is 4th of December. Warm up starts on the 1st with Photofrin (IV). The operation will be in Dundee, Scotland.

Fluorescence Guided Surgery and Photo Dynamic Therapy, here we come!

Here are some pictures of the Jazzman and music too!

2006-11-09T21:08:00.000+01:00

Sugar Blues featuring Anders playing his trumpet with LESS
at
Umeå Jazz Festival, Oct 28 2006.

Download from http://www.rogepost.com/dn/keiv (3MB)

And a short solo too!

http://www.rogepost.com/dn/k5gy (964 kB)

Phone calls and emails

2006-11-09T21:03:00.000+01:00

So no updates in a couple of days.

Well we’ve been so full of activity checking up thing as we wrote before. Phone calls and emails back and forth between different people. Printing out research paper after research paper to learn more about different options makes the printer go wild.

Cheers and keep sending us that positive energy!

Are we tired - YES

Dear Family, Friends and Colleagues

2006-11-04T10:59:00.000+01:00

Right now we are in full action looking up treatment options. The standard treatment our local hospital has offered us is surgery and then chemotherapy.

Other treatments we are interested in are Photo Dynamic Therapy or brain tumor vaccines.

We talked to Anders physician the other day and to delay surgery a couple of weeks is okay. This will give us time to get some answers back from other hospitals.

I think our research for other treatment options will continue next week too, after that we have to make a choice.

Anders was diagnosed with Oligodendroglioma WHO3, right frontal lobe in March 1999.

Under the current circumstances please understand why we sometimes do not respond to emails, phone messages, sms or soon comments. However we want you to know that we need them, we’ve listen and read them all and are so thankful for your kind words and thoughts.

Thank you all from the bottom of our hearts…