Some positive news...

Just a quick post to get this news out...

I had an MRI this morning and a consult with the neurosurgeon this afternoon. In short, the lesion at the back of my head hasn't changed shape or density since the October scan, so he didn't see an immediate need to operate or biopsy. What a relief - I really wasn't looking forward to the whole surgery experience again.

The plan now is to continue with the six months of chemo for the original tumour site and perform another scan in three months time to monitor for changes on the second lesion. So, although I'm conscious that we're not out of the woods yet, it feels like a positive start to the new year.

Another piece of good news the surgeon gave us was that I should be ok to start driving again, (we were led to believe that I couldn't drive for six months from the date of surgery). That's been one of the most frustrating things about the last four months - relying on others to go anywhere, when I felt perfectly capable of driving myself. We're going to call the licensing office tomorrow and, all being well, I'll be causing havoc on Minnesota roads by the weekend.

(Anna has got all sorts of crazy ideas about me driving Patrick to his 8am Sunday hockey games - we'll see!!)

Not having surgery also means that I can start working again, at least in some limited way (yes, I hear all your jokes..."didn't he always work in a limited way?"). The new chemo regime starts on January 10th, so we'll see this month how much it affects me and how much I can work. I'm certainly ready for it - there's only so much Judge Judy one can take!!

Happy new year to you all

Love & best wishes

A (surprisingly) rough week

Ok, so this time I have an excuse for not writing. Early last week I had a couple of days of being sick,  which could have been caused either by the build up of chemo drugs or the after-effects of the radiation treatment.

Then, from late last week until Monday I had a low-cortisol crash caused by coming off the steroid I've been taking. Apparently the body doesn't always kick in cortisol production, (a hormone produced by the adrenal gland), after having had it artificially for the last few months. It left me with no energy, low appetite, an unquenchable thirst, and some other unpleasant side-effects. Although we tapered off the steroid gradually over the last few weeks, the oncologist has put me back on a low dose and we're going to try and taper off again over the next few weeks. Hopefully, it'll keep my energy levels up over Christmas. (And the increased appetite caused by the steroids gives me a cover story for the extra turkey sandwiches!)

All-in-all it's been a frustrating time, as I'd planned to do so many things over these couple of weeks - I'm not a big fan of sitting around and sleeping during the day (contrary to popular belief!)

Luckily the steroids kicked in enough on Monday night to be able to go and see a Minnesota Wild, (state ice hockey team), game. They beat the Calgary Flames 4-1 and the boys had a great time, so it was worth  getting up and out for.

Proud dad moment of the week...Richard gaining his yellow belt in Tae Kwon Do...

I don't have much more news. We're all ready for a relaxing, family Christmas. The boys are super-excited and Anna has already made the first batch of mince pies - mmmmm!

We wish you all a wonderful Christmas and a very happy new year.
Love from
Barry, Anna, Patrick and Richard.

Psychoneuroimmunology (and other everyday words)

I know it's been a little while since the last post. Am I losing my readership? Tap Tap - is anyone out there? Oh well, I'll carry on regardless. Here are some updates on the last couple of weeks:

Treatment - Radiation therapy will be finished next Friday, and I'm ready for it! I really notice on the weekend days that I don't have it, how much it tires me on the weekdays that I do. It's also made my scalp sore and my hair fall out. (Grumble grumble.) The current dose of chemotherapy will end next Friday too; I get a couple of weeks off for good behaviour! The chemo will restart at a higher dose in January and run for six months.

On December 30th we have an appointment with the surgeon to discuss whether he will perform further surgery on the rear of my brain. (Remember from this post that there is a second lesion, but until a biopsy is performed they don't know exactly what it is.) Any surgery would probably take place during the first week of Jan.

Needless to say, we're really looking forward to Christmas. This is the first year that we'll have spent it here in the US and, although we'll miss our families, we're looking forward to lots of relaxing family time and perhaps a little cross-country skiing.

Another story of hope - On Friday one of the volunteers at the radiation centre, Tom, introduced himself to Anna and me and told us his story. He was diagnosed six years ago with the same type of tumour as me and today his MRI scans show him to be tumour-free. The main difference is that they were only able to remove 20% of his tumour during surgery (as opposed to the removal of the entire visible tumour in my case), so the remainder had to be treated with radiation and chemotherapy. Coincidentally, he also had a scar infection which prevented him starting treatment for seven weeks, during which time the tumour grew from 3cm to 7cm. The incredible part of the story is that the chemotherapy alone then shrank the tumour away to nothing and he was eventually given the all-clear.

Now, I know that for every survivor story like this one there are many others who aren't so fortunate, but Anna and I were really encouraged by the effect of the chemotherapy on such an aggressive tumour.

Positive thinking - A few of you have commented about my keeping a positive attitude throughout this journey. Well, I've been reading about a branch of science called Psychoneuroimmunology (it trips off the tongue, doesn't it?!) - let's call it PNI. Basically, PNI studies the connections between your mind and your immune system and there is increasing evidence that each affects the other. A sense of helplessness, for example, can suppress your immune system, while a sense of purpose can enhance it. I’ve oversimplified, but you get the point: your mind does control your immune response. There's lots more research to be done, but it's one more reason to stay positive.

Thanksgiving - One of my favourite holidays. We started very slowly with a late breakfast and lots of relaxing, followed by sledging with the boys (see video below). We rounded off with a wonderful dinner with our friends, David and Colleen, with double helpings of everything - perfect!

Half-way!

Yesterday I had radiation treatment 18 out of 35 - half way through and feeling better than I expected (i.e. still no other side-effects other than tiredness). So I'm happy about that.

Following on from last week's comment about hair loss, it finally arrived in earnest this week. I guess I lasted well for the first three weeks of treatment, but this week it started coming out in clumps and I had to finally submit to the hair clippers. Here's a picture from a couple of days ago, although even more has fallen out since then. Oh well...

I had another great insult from my radiation oncologist this week. We were talking through current drug doses and he suggested that I could lower the steroid dose a little more. Great! When I said that I hoped that might help to get rid of the 'lemon on sticks' look (remember...skinny legs and fat belly), he said "yes, and the buffalo hump" (an additional layer of fat that accumulates at the back of your neck due to the steroids). These doctors are just great at boosting self-esteem! I have a very fragile ego y'know!

Nurse Anna has turned her attention to our dog, Maxi, this week. About a year ago he tore the cruciate ligament in one of his back legs, and although we've tried to manage it with drugs and less exercise, it's been clear in the last couple of months that we had to take the plunge and have the surgery. So, he had the op yesterday and joined me in the titanium parts club (bionic dog?). He's recovering well and we should have him back to full strength in 8-10 weeks.

At least it will mean less time out in the snow this winter - for him and us! The snow arrived last weekend, with an initial downpour of 6-8 inches and, although it's mostly melted now, it's clear that we're in for a looong winter this year.

Flying

Just a short post on an amazing experience this last weekend. I have a friend who has a small, single-prop airplane, and we've been talking about taking a flight together for the last couple of years and just haven't got around to it. So, on Sunday we made the effort and Daniel took another friend and me on a great flight over the lake, the house, and then down to Red Wing, a small town about 60 miles from here. We were able to take a courtesy car from the airport, nip into town for coffee and cake, and then jump back into the plane to head home. It was a crisp, clear autumn day and Minnesota looked beautiful from above.

We flew back closer to the twin cities and it was fascinating listening in to the air traffic control conversations with the other planes, especially as we flew closer to the international airport.

Big thanks to Daniel for a great experience and to Andrew for hanging out with us and buying the coffees!

No new treatment news, although the radiation therapy is starting to affect my hair. It's not falling out as such, so no need to go for the fully-shaved look yet, but there is a big gap around the radiation target spot. I think I'll get by for a little while longer on a combination of comb-over and baseball caps!

One of the (steroid-induced) benefits of waking up at stupid o'clock in the morning is that I get to see the beautiful sunrises over the lake...

TED talk

As many of you know, I'm a huge fan of TED.com (a free online database of video talks, normally 5-15 minutes each, on a wide variety of subjects). I was mooching around on there last night and, after watching a couple of fascinating talks, I stumbled across this one...

Stacey Kramer Talk - (it's worth looking at before reading on and only takes three minutes to watch).

While I don't necessarily share 100% of her feelings, I was struck by much of what she said as she went through her talk - phrases like "bring your family together"; "reconnect with friends & acquaintances"; "re-calibrate what's most important in your life"; "challenged, inspired, motivated, humbled". I felt like she was taking the words out of my mouth, and still had no idea exactly what she was talking about.

You can imagine how stunned I was when she revealed what she was talking about. I thought it was a courageous and moving talk and just thought I'd share it.

Treatment this week (8/35 radiation 'zaps' and 10 days of chemo) has continued to go well. I've felt no additional side effects other than tiredness, and my blood tests are coming back with good results (liver & kidneys coping well), so I'm happy about that.

Anna and I just enjoyed home-made pizzas and movie night with the boys - the perfect way to end the week.
Until next time.

(If you're interested, my favourite talk so far on TED is by Benjamin Zander, on music and passion - here.)

What a weekend!

I'm writing this feeling pretty exhausted but totally content after a great weekend.

A quick word about treatment...we restarted both the radiotherapy and chemotherapy again on Wednesday, and although it's just the beginning, I am feeling a little more tired during the day. Afternoon naps have increased from around 30 mins to an hour - oh well! The good news is that, so far, they have not made me feel nauseous or ill in any other way.

On Saturday morning, Anna got up ridiculously early and went off to run her second half-marathon - the Halloween Monster Dash (hence the costume). Her Dad, the boys, and I followed on later and found a spot to watch her come past at nine miles and then take a short walk to watch her cross the finish line.

As many of you know, Anna was collecting sponsorship for the American Brain Tumor Association, and as I write, has raised over $2,500, which I think is truly amazing. I know it put an extra little kick in her stride too! From both of us, a sincere and heartfelt 'THANK YOU' for your support.

Here's my favourite photograph of Anna, looking very relaxed and happy, as she ran past us...

After lunch and a short nap, we took Patrick, six of his friends, and Richard to 'Grand Slam' (laser-tag, bumper cars, and other amusements) for his birthday party. Although we didn't see much of them, it was great to see their happy little faces running between activities. Patrick truly has a wonderful group of friends. We were proud to host a party of such well behaved, good mannered children. Patrick really knows how to pick the good ones! (This will come as no great surprise, but Richard more than held his own with the 'big kids' too).

A week or so ago, Patrick announced (as your average 9-year old does?!) that "for my birthday brunch, I'd like to go to Fletcher's" (a nearby lakeside restaurant). Admittedly, it does serve a great brunch, but y'know!
Our good friend, Daniel, came along, and helped us get Patrick's birthday off to a great start.

After some relaxing and time for Patrick to enjoy his new gifts, Anna, Henry, and the boys went out trick or treating with our neighbours. (I stayed home to scare off the local kids with my scar!)

All in all, lots of precious moments. (Oh, and Newcastle's 5-1 win over Sunderland didn't hurt either. For local friends that's like the Vikings beating the Packers 46-3!!)
Until next time.

Anticancer - a book review

Obviously I've been doing a lot of reading in the last few weeks, and I just wanted to share some of the ideas that I've learned in one particular book, 'Anticancer - A New Way of Life', that I'm trying to apply to support the medical treatment. There's nothing in this post about treatment progress, white pant suits, or yoga positions, so read on only if you're interested.

From reading this book and talking with our medical team, we've learned that cancer treatment is changing so rapidly, that it's a challenge for medical professionals to simply keep up with the science. So, I think it's completely reasonable that we research as much as possible what we can do ourselves to supplement the treatment. What I've learned has surprised me (how much can help) and I'm keen to learn more.

Dr. Servan-Schreiber's story (here) is interesting in itself, as he has twice survived brain cancer and used his medical research background to write the book.

My key takeaways:

• Reduce intake of refined sugar and white flour
• Increase intake of anticancer products - turmeric, green tea, cruciferous vegetables, and berries.
• Avoid processed foods
• Spend 20-30 minutes of physical activity per day
• Practice a method of relaxation (e.g. yoga, tai chi, etc.)

A couple of specifics on how the so-called anticancer products can supplement the medicine (obviously, there's a lot more science in the book):

• Turmeric, a spice used heavily in Indian cooking, has been shown in studies to have powerful anti-inflammatory and antioxidant properties, which can inhibit the growth of cancer cells. (There are some very interesting statistics on cancer rates in India vs the US, despite the different living standards).
• Green tea - I didn't realise, but black tea is simply green tea that has been further processed by fermentation, creating black pigments (theaflavins - which I guess make it taste good). The downside is that this process strips the tea of certain polyphenols which have also been found to inhibit the growth of cancer cells.

The great thing that I've noticed about the changes we've made has been the ease with which we've been able to introduce them. Adding a few frozen berries to breakfast cereal, adding turmeric and black pepper to soups and pasta sauces (the boys haven't noticed - a key measure!), drinking green tea instead of black - all simple to do and have improved the meals. Just tonight, Anna's Dad commented on how good the whole-grain rice tasted with dinner.

Well, I just wanted to share some of this as many of the measures are preventative and therefore beneficial to us as a whole family, not just as part of my treatment. Food for thought.

A lemon on sticks

The steroids that I'm currently taking, to prevent swelling on the brain, also bless me with a bloated face and rounded belly, and my legs still haven't filled out to their former mighty proportions! My surgeon, never a man to mince his words (great when you want your diagnosis in no-nonsense terms, not so great when he's describing your new appearance!) said that, among the medical profession, this look is known as  'lemon on sticks'. Great!

Anyway, the purpose of the meeting today was for him to check that the scar infection has healed correctly (it has) and that I can re-start radio/chemo-therapy from tomorrow (I can).

Here's the last of the beautiful Fall photographs, from a great walk that Anna and I took last week...

Yoga

Just back from my first yoga class and it was fantastic. Around a mile or so from here a new business has set up offering cycling and yoga classes and Anna talked to the owner a couple of days ago to see if there would be a class suitable for me. So tonight I went along for an 'introduction to yoga' and ended up having a one-on-one class, which was great. The instructor was able to spend time explaining the movements/breathing perhaps more than she would normally, and she could work on correcting my 'downward-facing dog' (it needs a lot of work!). We covered cats and cows, warriors (I and II, no less!) and tree poses - it was an education.
Anyway, it was just what I needed - enough exercise to get me stretching and moving, but relaxing enough to fit with my current energy levels. I have some things I can work on at home this week and I've already signed up to go back next week.
One happy little yogi.

Cycling, yoga, and coffee in the sun.

Mixed feelings again this week following the results of my (one-month post-surgery) MRI scan on Tuesday. The surgeon called on Thursday and told us that he was happy with how the original resection site was looking, but that there had been "changes" to the lesion at the back of my head. He wants to biopsy but only after the radiotherapy is complete (probably mid-December). We'll find out more information when we meet him again next week. So, it feels a little like we're fighting on multiple fronts, but at least they're aware of it and have a plan to monitor and address it in due course. Apart from that, I'm feeling well, the scar looks like it's healing up nicely, and we have a slightly easier week ahead of us with less hospital appointments. The course of antibiotics will finish on Friday and we're seeing the surgeon and oncologist early next week with a view to restarting treatment.

This weekend I got back on my bike for the first time since surgery. I started feeling that a daily walk around the circle with Maxi wasn't quite getting me fit enough. So on Saturday, I accompanied Anna on one of her three-mile training runs (looking very much like a personal trainer and feeling like an asthmatic pit-pony!). Yesterday we did the same route but with us both on bikes we were able to pick up the pace a little. I felt very breathless afterwards, but the plan is to try and do something like this every day (recommended 30 mins daily exercise as part of recovery) and try to build up from here.

This week I'm also going to look into starting yoga classes. Many of the books I've been reading, as well as the excellent resources I've received from livestrong, have suggested that yoga can have great benefits to the recovery process - from simply helping to relax, to improving strength and flexibility, and can help to boost the immune system. More on this later, I'm sure.

(The image just keeps building doesn't it...Hannibal Lecter practicing yoga in a Steve Austin white pant suit!)

Anna's Mum and Dad are staying with us at the moment and sharing our enjoyment of the last few warm days of October. Here we are having coffee in the sun in Excelsior...

OUCH!

On Thursday morning we had an appointment with the surgeon to check over the scar again and he quickly decided that the best way to clear up the infection was to re-open the scar, clean it out with an antibiotic flush (very strange sensation!) and re-stitch it. He also wanted to be absolutely sure that there was no infection to the bone underneath where the titanium plates have been fixed.

Anyway, to keep a short operation story short, I was into surgery within a couple of hours, they performed it under local anaesthetic (which meant I felt everything) and I was out within about forty minutes. I have to say that the incredible care I had from one of the nurses got me through the pain of the surgery - she kept reminding me to deep breathe and squeeze her hands as hard as possible ("I've never lost a hand doing this, so squeeze tight"). I won't forget her. Afterwards, the surgeon was happy that we'd done it and said that everything looked good underneath. Despite the discomfort, (I think) I'm happy we did it too.

(I know what you're thinking...titanium plates...how cool...makes me think of the 'Six Million Dollar Man'!!)

I'm now on a course of IV antibiotics for two weeks, so that's the earliest that the radiotherapy and chemotherapy will re-start.

An interesting side note on the IV drip....I came home from hospital connected to a small IV pump, which dispensed the appropriate amount of antibiotic every eight hours into a picc line in my arm. Patrick was pretty freaked out by the whole thing and doesn't even want to see it, whereas Richard is completely fascinated and wants to see exactly where the line goes into my arm, where it goes afterwards, what does it feel like? etc etc. They're funny.
Actually, the pump was a complete pain as it had to go everywhere with me, so today they switched it out so that Nurse Anna can just push in a syringe of meds every eight hours. Much better.

This weekend the weather has been beautiful and today we were able to take the boat across to our friends' place for lunch - Sunday roast with beef and yorkshire puddings - perfect! (Thanks Steve and Colette!)

"Gentlemen, we can rebuild him"

A small setback

Yesterday we found out that the scar on my head has developed an infection. So, for now, the surgeon has put the radiotherapy and chemotherapy on hold until the antibiotics can clear up the infection. It's knocked me a little as I was all psyched up to get on with treatment this week and now have to stop after just two sessions of radiotherapy and one chemo tablet. Still, we were told that the optimum treatment timetable is 3-8 weeks from surgery, so we're still well within that and I now have another week to build up to it.

It might also give me the opportunity to have my 'last' whiskey all over again. Obviously, I'm giving up alcohol once the treatment starts and last Saturday I decided was the night to savour my last single malt for at least 6 months. Oh and it was goood.....a smooth, mellow glass of Balvenie Doublewood over a couple of ice-cubes....bliss!

Here's a photograph from today's walk around the circle with Maxi...the Fall colours are getting better every day and the sunny skies are setting them off a treat this week. Long may it continue, and hopefully when I write next I'll be back into treatment.

Hannibal Lecter, drugs and books.

So, I had my first session of radiotherapy today and, although it's very early days, it wasn't that bad. I was on the bed for around twenty minutes in total and probably half of that was used for setting up. They put on my Hannibal Lecter-mask (actually it's not that gruesome - it's just a moulded-plastic mask that keeps my head in place, but that's how I picture myself!) and then take some x-rays to make sure I'm in the same spot every time. The treatment itself lasted around seven or eight minutes and I've somehow developed the ability to slip into a zen-state of mind while I'm lying there. I really want them to hit the right spot, y'know! The other major challenge is filtering out the 80s rock ballads and other terrible radiographer-choice music cuts...I'll let you know how that goes.

A favourite moment from today was the look on Anna's face as she handed me the drugs haul from her visit to the pharmacy while I was having treatment. Even though the drugs are covered by medical insurance, the price of each drug is listed and Anna handed me the paper bag as you would pass someone a bag of explosives. "Here's $15,000 worth of tablets...don't drop them!!"

Books update (as a few of you have asked). 'Late Nights on Air' was excellent - more for the wonderfully-crafted characters and the rich descriptions of Northern-Canada than a pacy plot. In the end, I didn't want it to end, so that's a pretty good measure of a great book for me.
I'm currently half-way through Paul Auster's 'Invisible', which is absolutely unputdownable (thanks Janis!).
Today I also finished the first chapter of 'The Adventures of Sherlock Holmes'. I've found that there are loads of books that can be dowloaded to the iPad for free simply because they're out of copyright. (Yes, you can add 'cheap' to 'stubborn'!). So, I might add a few classics to the great list of suggestions that I received on the calmer books post.

Actually, I'm missing the midnight reading time a little (although I'm sure Anna's not). There was something quite nice about passing a couple of quiet hours in the still of the night with a great book.

Mayo Clinic

Anna and I drove down to the Mayo Clinic on Wednesday afternoon. It's only a couple of hours south of here but we wanted to leave enough time to have dinner and get to bed early enough for the 5.30am start the next day. We went for a very good Italian meal, (I'm enjoying my last few opportunities to have wine as I'll be tee-total from Monday), and really enjoyed some quality time together.

The clinic itself is very impressive, unlike any other hospital Anna or I have ever been to. I had some blood tests first thing and then we had a 45-minute consultation with one of the oncology doctors. As I said before, the main reason to visit with Mayo was to get a second opinion on the treatment plan, but also to get more information on clinical trials for other treatments, should I need that option down the road.

There was one change that came out of the visit. When I had the first MRI scan that revealed the tumour in early September, there was another lesion at the rear of my head that showed up on the scan. The doctors couldn't say exactly what it was. The initial treatment plan proposed to target the radiotherapy at the primary tumour site and monitor the other one over the coming months. But, in consultation with one of the Mayo oncology professors, a neurosurgeon, and a neurologist, they suggested that it makes sense to target the radiotherapy on this rear lesion as part of the current treatment. As the chemotherapy is blood-born, it will target the rear lesion anyway. The Mayo team have since contacted the local team to make that proposal.

I'll be honest, it has been a tough few days. Every time we hear the doctors talk about this type of tumour (glioblastoma multiforme), and the poor prognosis that typically comes with it, there are some low moments that follow. Perhaps just having had more time to ourselves over the past few days has allowed us to process some of the information and made us realise what we're up against. I'm sorry to put it so bluntly, but I do want this blog to be authentic.

All of that said, we are still mindful of the factors going in our favour...my age, general fitness, the successful surgery, and excellent medical care. And we keep coming across different stories of people who have survived (19 years and counting, one guy we heard about yesterday) this kind of tumour. I just have to look for a moment at my beautiful family to find the strength and courage to fight this thing head-on. On Monday the fight begins...I'm ready.

It's funny how you don't necessarily think of yourself as a stubborn, strong-willed person as you go through normal life, but the number of people who have told me lately that those are the traits that are going to get me through this is starting to make me wonder! My boss told me to take it as a compliment, so I will for now and channel them into the next few months. (Please feel free to tell me to reign in the stubborness when I get back to work though, eh!)

I just want to end on a word of thanks to our close friend, Carla - she stayed overnight with the boys while Anna and I went down to the Mayo, and it was such a good feeling to know that the boys were not just in good hands, but having great fun (and pickles for breakfast!). Thank you Carla.

(Sunset from Cádiz)
I'm attaching a photograph that a kind friend from Seville sent yesterday with a note that touched our hearts - muchas gracias Pepi!!

Strength-building...

A few days on and I continue to feel a little better every day. We went to the hospital yesterday for some occupational health tests - to check that my cognitive functions had returned to where they should be (they were way off in the first few days after surgery, which was quite disconcerting). The test results were very positive and the therapist saw no need to book any further sessions. So, after a week of sudoku, word-searches and other puzzles, the iPad has pretty much paid for itself. I just need to keep working on some short-term memory stuff and I should be pretty much back where I was. So, after a week of sudoku, word-searches and other puzzles, the iPad has pretty much paid for itself, (I'm sorry, I couldn't resist! Ok, not that short term!)

I'm trying to do a little more each day in terms of getting stronger. Despite my steroid-fueled appetite, I haven't quite returned to my normal weight, but I'm also conscious that I don't just want to add weight in all the wrong places. So, today we went for a great walk in one of the local regional parks. I think a good hour of walking and lots of fresh air did me the world of good. My Dad says I still walk too fast, so I'm going to take that as a good sign!

Coming up this week we have an overnight visit to the Mayo Clinic in Rochester. For those of you not familiar with it, this is one of the US' leading teaching hospitals and we're so fortunate to have it just a couple of hours away from here. At this stage, we're going for a second opinion on the proposed treatment plan, and also to get a foot in the door in case we need their help further down the line with other potential treatments.

I start the combined radiotherapy and chemotherapy treatment next Monday. The radiotherapy will run for approximately six weeks and I'll take a pill-form chemotherapy at the same time. Then there'll be a period of increased-dosage chemotherapy only, (I'm not exactly sure how long at the moment). There'll be testing and monitoring performed throughout to see how it's going. This is the current best standard of care to treat this kind of cancer and, from what the doctors are saying, Anna and I are optimistic that as many factors as possible are in our favour.

Thanks again for all of your comments and messages of support. A good friend brought some Guinness home yesterday, so I'll keep working on the strength-giving properties of that and my recently-extended reading list! Until next time, much love.

A short birthday message

When I suggested that I might post today as it's my birthday, Anna asked me who I thought I was..."the Queen?".

Anyway, I just wanted to check in and say that today was a good day. I was given some wonderful gifts this morning from Anna and the boys. A mug and coasters personalised with the boys artwork from school were particular highlights.

I went to pick up a few new dvd's under the "movie-expert" eye of my Dad. We then spent a very pleasant hour or so sitting in the sun on the dock and catching up on family talk. Just meeting the boys from the school bus is a small highlight of these days. Dinner at a good Irish pub in Excelsior, complete with Guinness ("for strength" so the old ads say) rounded off a good birthday. Here's a few photographs from the day...

I also wanted to thank you all for the continued comments, book recommendations, and messages of support - it makes this blog as fun for me to read as it is to write.

Better sleeping (or calmer books!)

Thanks to all of you for the comments and encouragement after the first post the other day. I'm continuing to feel a little stronger every day, enjoying all the extra food that the steroids force (!) me to eat, and trying to fit in a little light exercise each day. Newcastle's win over Everton today didn't do the spirit any harm either!!

One of the main side-effects of the steroids is that I don't sleep right through the night, so I'm getting plenty of midnight reading done. The thing I've had to improve though, is the intensity of my reading material. I was in the middle of 'Angela's Ashes' when I went into hospital and stupidly continued to read it in the first few days post-surgery.

It's an excellent book, telling the moving story of Frank McCourt's childhood during 1930s and 1940s Limerick, Ireland. Much of the narrative focuses on the day-to-day struggle of the family to find sufficient food and clothing, especially as Frank's father was an alcoholic who either couldn't hold down a job or drank his wages on the way home each week. The problem for me was that my mind was not the most settled and I had a number of weird dream sequences of wanting to go back in time to give food and clothes to the McCourt children or wanting to create some kind of home for them here on the lake. It was all very bizarre and probably not ideal recovery reading.

Next up was Lance Armstrong's outstanding autobiography 'It's not about the bike', chronicling his comeback from testicular cancer at the age of 25 and his subsequent seven tour-de-France wins. It's an incredibly inspiring story and I took a lot of positive energy and ideas from it, but again, I'm not sure it was the most settled reading for my sleeplesss nights.

So, last night, armed with a saucer of lavender oil and a copy of Elizabeth Hay's 'Late Nights on Air', I enjoyed a much more settled sleep. It's a novel set in a radio station in the northern Canadian town of Yellowknife and, although it sounds odd, the words just seemed to fall off the page into my mind, without making a sound.

I guess I'll work on this for the next couple of nights, but it's definitely a step in the right direction. All other calming book recommendations warmly received.

A New Beginning (for the blog)

So, I started this blog a year or so ago to record some of my travels and photographs to share with family and friends. That was great fun and I just enjoyed a few moments reliving some of those great trips. I think it now makes sense to use this space, for a little while, to write about the new ‘journey’ ahead of us, whatever that may bring.

I’d like to have a way of sharing some thoughts and progress with friends and family and I thought that this might be a little more discreet than Facebook. Some days I might write more than others. I figured you could just choose if/when you’d like to come and read it. I’m so fortunate to have amazing views of the lake from most rooms of the house, so some days it may be no more than just a couple of comments about the changing of the season.

Today is my fourth day back at home, post-surgery, and the first few days recovery have been much better than we expected. There was a suggestion in the hospital that I might stay in for a week or so and our surgeon was right to stand strongly against that. He wanted me out of harm’s way and believed I would recover much more quickly at home. He was absolutely right to suggest that. Even just the option to take a short walk around the circle can make a big difference to my state of mind.

I’m continuing to work on improving my cognitive functions, which meant we had to buy an iPad in order for me to practice sudoku, word-search etc. Unsurprisingly, that’s descended into a challenge between Anna and I to get our word-search times down as low as possible! (Any excuse to get her hands on the iPad, if you ask me!)

I’ve got my full appetite back and now just need to work on filling out again a little bit. I lost more weight than I expected even just with a few days in a hospital bed. ‘Operation big buns’ starts here...

We’re meeting with both the surgeon and the oncology department tomorrow to discuss the next steps in the plan. Obviously, Anna and I have many questions but still a whole lot to learn about this condition and the best ways to tackle it from here onwards.

Please feel free to interact - ask questions, make suggestions, heckle etc. I’d like it to be a conversation, not a monologue.

I just want to sign off with a truly heartfelt ‘Thank you’ to all of you who have contacted us over the last week or so. It’s been quite an emotional journey and we both drew enormous strength from your messages of support and love. We’ll never forget it.

Until next time, with much love
Barry

Sydney & Wagga Wagga

Wow. What an amazing trip. Of all the places I’ve been so far, this has gone straight to number one on the list of where I’d love to bring Anna and the boys. This trip wasn’t as much of a cultural shock as Nicaragua or India (although putting beetroot on a burger was certainly different), but it was a rich experience all the same. Sydney pretty much ticks all the boxes in terms of a great city – architecture, bars and restaurants, beaches, shopping. I’m going to stop there as I’m starting to sound like a travel agent.

We arrived in Sydney two weeks ago at around 7am Saturday morning and feeling like 4pm the day before! So, the best way to fight jet-lag is to go for a long walk. Here’s what we saw…

The William Bligh (of Bounty fame) monument.

I love a good people photograph and this guy sitting outside the Irish pub was irresistible.

We jumped on a ferry to Manly (great name for a town) and got this shot of the Opera House. It truly is an amazing building.

Manly is a pleasant beach town about 30 mins across the harbour from Sydney. I foolishly started the day in jeans and boots thinking that it’s autumn so it’ll be cold outside. A quick visit to a surfer dude shop in Manly and I was all set for the beach.

The following weekend we had pretty much a full day at Bondi Beach, which is more of a bohemian surf community than just a beach. The beach itself is gorgeous – a long crescent with cliffs at both ends and fine, golden sand. The highlight for me was the waves – they were between 6 and 8 feet high and I learned how to body surf by watching the locals: swim as fast as possible when a big one approaches and it just picks you up for a ride if you time it right. What a blast. It did flip me over a couple of times, but it’s a fairly soft landing!

Here’s a picture of Flat Stanley hanging out with the very friendly ladies from Bondi Surf Rescue.

Last Sunday morning I walked alone through ‘The Rocks’, an area of rugged cliffs now turned into a marketplace which leads to the Harbour Bridge. After some boomerang hunting (looking for boomerangs for the boys, not hunting kangaroos or anything), I went to the Museum of Contemporary Art and was unexpectedly blown away, especially by the aboriginal art. At first it looks like thousands of randomly placed dots, but a friendly art gallery assistant later explained that each painting has a story behind it, normally related to the Dreaming – the indigenous Australians belief system. Fascinating stuff.

Other memorable moments of this trip…

• Going to see the Sydney Symphony Orchestra last weekend – I couldn’t quite believe that I was sitting inside the Sydney Opera House. What a treat.
• Bumping into a Rubik’s cube pub crawl in Wagga – some newly-graduated local students were out on the town in various items of clothing in primary colours and the idea is that they swapped clothes throughout the evening and had to end the night all in one colour. Sounds like a fun night out to me!
• Wandering around Paddington – an eclectic area of Victorian terraces and offbeat shops.
• Playing rhythm sticks along with the didgeridoo guy on Darling Harbour.

As beautiful as Australia is, it wouldn’t be the same with the Aussies – laid-back, warm, and fun-loving people. They like a beer, they like their sport, and they can give and take the stick as well as anyone I’ve met. A fun couple of weeks – I hope I’ll be back.

I’ll finish with my favourite photograph of Wagga (taken about five minutes after chasing Kangaroos in a 4x4)…

Stanley in Sydney

I'll write more about wonderful Sydney in another post - I just wanted to get these photographs up to show what fun Stanley has had so far...

We took a boat-trip to nearby Manly, and probably the best shots of the Opera House and the bridge are from the water.

Sydney Harbour Bridge, also taken from the boat, is pretty impressive. Built by a company from Middlesbrough, England, who also built the Tyne Bridge in Newcastle.

There's an option to take a 3-hour climb up to the top, but Stanley doesn't have a head for heights (and, more importantly, a spare $150!).

Here's Stan scaling the side of the Opera House. The fact that he's a little bit hard to see has given me an idea for future photographs...'Spot Stanley' (a la Where's Wally). What do you think?

The outside of the Opera House looks a little like snakeskin from a distance, but actually it's covered in over a million glossy and matte tiles, imported from Sweden.

Stanley enjoying the view from the Sydney Tower, the tallest structure in Sydney. If you look carefully, you should be able to see the top of the Opera House by the water.

Stanley and the security guard

So, word on the street is that I write a better blog than Mr. Barry – haha! I’ve left him crying in the corner and I have the laptop again. :-)

We drove five hours on Friday night from Delhi to Agra and stayed at the best hotel of my life, the Jaypee Palace (picture of me below in the comfy bed). The drive there was interesting to say the least. Long stretches of the road are two lanes (often with four lanes of traffic!) and you have to pull out into oncoming traffic to pass the tractors and slow-moving trucks – my nerves were shot!

On Saturday morning, we drove out to the Taj Mahal, only a mile or two from the hotel. We had a short walk to reach the entrance to the grounds, with monkeys roaming freely on the path beside us. We bought the tickets and the little white shoe covers that you have to wear inside the mausoleum, and headed for the entrance. As we went through the security scanner, the guard stopped Mr. Barry and said that he couldn’t take me in, as I was a toy.

A TOY?! A TOY?! I have feelings you know! And, more than that, I have a blog following bigger than Mr. Barry’s!

He argued a little to get me in, but the guard had a gun and he didn’t want to push it too far. So, I hung out in a nearby craft shop while the rest of the group went inside. I’ve never seen Mr. Barry so angry.

He told me later that the Taj Mahal was spectacular. It was built by the Mughal Emporer Shah Jahan, as a symbol of love for his wife, Mumtaj, after she died. It's constructed entirely from Marble, which was brought to the site by elephants from the North West of India. It took 22 years and 20,000 workers to build the Taj and the surrounding buildings. The highlight for him was the intricate pattern of gemstones that were set into the marble on the inside of the tomb. The stones (turqoise, jade, sapphire etc.) were brought from all corners of Asia to complete the design. One of them, Carnelian, is translucent and glows like it's on fire when light hits it a certain way.

Mr. Barry, pretending to be happy, but missing me really.

Next was a short rickshaw ride and then on to Agra Fort, which looks across to the Taj...

Here you can see me with the Taj Mahal in the background. Actually, this is an amazing way to see it from a different perspective, as the land around is fairly flat and the majesty of the building stands out on the horizon. (Also, it’s also the only way to see the Taj if you’re a little on the…erm…flat and colourful side!)


Here are some other pictures of people and places in India…

India Gate, Delhi

Buying peanuts on the road to Agra

The doorman of the Jaypee Palace Hotel

 
 











Gemstones inside the Taj Mahal

Until next time
Stanley

A school in Gurgaon

On Friday afternoon, the local team arranged for us to visit a primary school that is supported by Cargill. The aim of the school is to provide education for the children of migrant workers who wouldn’t ordinarily receive it. It was a modest building with three or four classrooms inside and one caged classroom out in the playground. (Caged to keep the local monkeys away from the children!)

I loved talking to one of the teachers and hearing the stories of how their organization grew over the past seven years. It was started by two elderly ladies in the village offering teaching under a tree to the children that they saw doing nothing. The work was recognised as being valuable by the local community and they gradually moved to outside classrooms with a few tables and chairs, and now to this school building. They provide a lunch to the children to guarantee at least one good meal per day.

One of the problems that the teachers explained is that once the children reach an age where they can work; their parents struggle to see the logic of education. “Why send my son to school when he can work and help to put food on the table?” So, although they don’t pay for the education, they are sacrificing the opportunity to support the family in the short-term. What an impossible choice.

Still, the work they do at the school is fantastic and all of the staff (most of which are volunteers) speak with a lot of passion about the school and the children. It’s heartening to work for an organisation that supports this kind of work.

Flat Stanley's Indian Adventure

We have a guest blogger this week...Flat Stanley...a happy little character created and coloured in by Patrick at school. The idea is that he is sent to friends/family in different places and returned to Patrick with a photograph of where he's been. Take it away Stan...

Here's me outside Qutb Minar, the oldest monument in Delhi. What you can see is just the minaret, but it was surrounded by Hindu temples and ruins, all built in the 12th and 13th centuries. Very impressive.

Mr. Barry (that's what they call him in the hotel - he thinks he's a big shot now!), his friends and me had a driver for the whole day on Sunday and he took us on a whirlwind tour of Delhi. After Qutb Minar, we made a brief stop at a craft shop, where the guy explained how they make Kashmir rugs (fascinating - it can take up to nine months to make a single rug) and then failed miserably trying to sell them to us (have you ever tried selling stuff to a 10", orange, laminated guy?).

Next stop...Humayun's Tomb, a beautiful, red sandstone building which houses the tomb of, you guessed it, Humayun. He was a Mughal Emperor who ruled India, and what is now Pakistan and Afghanistan, in the 16th century. The building and gardens are said to have inspired some elements of the Taj Mahal. (Ooh, get me - I can read wikipedia, just like Mr. Barry!)

Here's me on top of the ruins nearby the tomb. Mr. Barry was trying to look cool, like me, but actually he was a bit scared.

Part of the fun of the drive around Delhi was just watching life on the streets...the rickhaws and auto-rickshaws (which can carry more people than you'd think possible), motorbikes carrying the whole family, cows ambling among the crazy traffic, and my favourite...elephants...

Funniest moment of the trip so far...tonight we went for dinner in a nearby hotel...Mr. Barry asked where the restaurant was and they didn't understand his poor English...they sent him to the restroom. (I laughed my little, purple ass off!)
Namaste
Stan