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A Hot Bath and the Simple Things in Life

15 Nov

A couple of weeks ago I spoke to my sister-in-law in New York who told me how wonderful it was to have running water and a hot bath. Not surprising after she was evacuated from her super-storm Sandy-ravaged house. It’s only natural that one focuses on immediate challenges.

I’m continuously amazed how my own daughters keep coming up with practical plans for our own immediate challenges. Almost immediately after I clicked “publish” for my last blog, pain kicked in yet again – as did a certain amount of desperation. “No problem”, chirps one of my girls, “just have a hot bath”.

One forgets how simple solutions can be found right under our noses. Weightless (and relatively pain-free) in the warmth of your own water.

If only life was a simple as a hot bath… or just getting around. But as we all know, it’s not.

When I say “getting around”, I don’t mean driving myself from A to B; I haven’t been behind the wheel for weeks now. I mean getting to the car. Walking those few, all too taken for granted, steps. My body has betrayed me – but it’s the only one I’ve got. So regardless of the pain, I have to keep moving somehow… just keep moving, walking, stretching. Seems like ages ago it was from the golf buggy to hit my ball. Then my efforts were reduced to walking round the block. Then, round the house and garden. And just latterly, “round the house”, is a few steps in the house itself. Funny, that with all my so-called discipline and fight, I need to be constantly cajoled and reminded to do my rounds.

Again, I’m so grateful that Pam and the girls give me so much time, care and devotion. Sidelle, running around to do whatever required; Joanna, literally “hands-on” every night, and Nadia, with so many solution. The latest, was the not-so-subtle suggestion of using a wheel-chair again. “Don’t see as a step backwards, see it as the opportunity of us still being able to go to the beach and enjoy the warmth of the winter sunshine.” “Besides”, she added, “we’ve been there before”. Who would have believed that almost two years has passed since I was wheel-chair bound (before being hospitalized). Who knows when and how things will turn out.

Let’s hope that one step back is worth the next two steps forward.     

 

Up and Down and.. . .

5 Sep

How many times have I said – and even written in the blog – that life is a turning circle. We never know when things are going well, how far we are from the top before life tips us over. Similarly, we never know when we’re approaching the bottom of the cycle, only for it to start going up.

Recently, and in the last week in particular, I’ve certainly been in a downward spin. It’s easy to explain why. I just couldn’t bring myself to post it as a blog. If I was on my blog jury, I would definitely still be “out”. Do my faithful, supportive readers have a “right” to know, should I have shared my thoughts when it mattered most, or simply put: “whose blog is it anyway”? Why am I looking at when I last wrote – why do I care how often I communicate like this?

This is the bottom line: my stomach issues have caused me too much pain. It’s cruel, this cancer. The physical deterioration leads the mind off to meander. And I’m not alone. My family immediately picks up the vibe and the discussions become dramatic. But my brother-in-law Keith, is always there as a medical miracle. “Give your stomach a complete rest”, he advises me. I’ve been on a liquid diet for the last five days; starting with clear chicken broth and water only. I’ve now worked my way up to include some soft pieces of the broth’s chicken and its overcooked vegetables. The Jewish penicillin seems to be waving its wand. And he had one other tip – the juice of sauerkraut!! Apparently, it’s full of pro-biotics.

I’m more than happy to report that today is a much better day. Notwithstanding that Keith also advised that I “take it easy” (my late father-in-law’s mantra), today is my daughter’s birthday. We’ve decided to travel north to celebrate together. “Doing” is part of my mantra. It’s what motivates me and is a reason that I feel driven to keep finding things to do. But my body is telling me through tiredness that I have to tone it down. Golf was the first casualty this week. Lethargy has leapt to the fore.

This is where friends and family come through. My golf buddies continually tell me they’re there for me and waiting. Yesterday, a true friend flew back to Israel from a family wedding and phones to see how I’m doing. And I know there’re others who really care.

I hope they realise how much I appreciate such support. The fight goes on.    

Salute to the Queen

11 Jun

Sometimes you just have to see the sunnier side of a situation. Yesterday, I had another treatment at Ichilov. Sacrificing my Sunday golf to put a distance of one more day between this treatment and our Friday departure for South Africa.

The more I’m at Ichilov, the more I’m aware of its administrative mess. This time registration and retrieving my file was a relatively simple process – only to be “compensated” by an almost two hour wait for a blood test. Then the usual interminable wait for their results, and an even longer wait for the chemo to arrive from the pharmacy.

But as they say in the “Life of Brian” – “Always look on the bright side of life”.

My middle daughter came with us for this treatment – which was a pleasure in itself. Having been allocated my comfy-chair, it was well into the afternoon before we settled down to watch the Nadal/Djokovic final on the personal entertainment system. Nice. But while flipping through the channels we came across a replay on BBC Entertainment of the Jubilee concert for the Queen outside Buckingham Palace. Someone must have been looking after us. The sound – which is normally limited to head-phones only – came through loud and clear. The likes of Stevie Wonder, Elton John et al soon put us in the mood. Our sing-along was in full swing.

And when Paul McCartney morphed his magic into the national anthem – I couldn’t help myself and stood up and saluted the Queen!!! How many cancer patients can claim that feat during a treatment? (or would want to….)      

My daughter took some photos of me, hooked up to my medication, standing and saluting the Queen – with Her Majesty smiling serenely back from the screen. But as I’ve said several times before, my narrative in this blog remains in the medium of the written word only, and I’m not tempted to document it with photos. “CAN CANcer be fun?” (my blog of Jan 12, 2012) remains the only exception.

The Passion to Survive Pancreatic Cancer

4 May

Recently I’ve found myself being criticised for being too “passionate”. I’m not referring to any lurid lechery but more mundane matters. For example, when I let out one of my expletives on the golf course. My golf partners can hear me calling myself “twit” or “you silly boy” – strong stuff indeed. Then I’m told to calm down – it’s only a game. Or letting my emotions get the better of me when West Ham concedes yet another goal. “They don’t care about you – why should you care about them”, I’ve been reprimanded. Or little idiosyncrasies of people in the service industry that tend to irritate me. Being told “Why do you take things so seriously? Don’t take them to heart” – is not exactly heartening.

I look at these minor infractions and ask myself whether they have any meaning. My outbursts on the golf course are only aimed at myself, and last no more than the moment. I demand a high standard of myself and if I can’t hit that little stationary b… ball, why can’t I be irritated with myself? And wishing West Ham win? It’s only a game – and for its duration, why can’t my team win?

The question is whether my attitude today is any different from before I was diagnosed, and whether it makes any difference? The answer to the first question is a definite “no” but to the second question a definite “yes”.

To those who know me, it’ll come as no surprise that I can often be ignited from a very short fuse. I may go “bang” but then it’s all behind me. The bashing is basically at myself – and I’d be sorry if anyone felt slighted.

As to whether it makes any difference?  Cancer hasn’t changed my character. I’ve always been passionate about causes that concern me. I see my passion as a spark that is able to ignite my continuing fight.

This week I went to the funeral of a work colleague. A “Yekke”  born in Berlin in the 20s who came to Palestine as a twelve year old and became a legend in his own life-time defending the country. There were a number of old-timers there, many of whom I hadn’t seen for a while, who looked at me as if to say “What, you’re still here? You really must be amazing”. I don’t see it as such. Deeds of daring deserve their due, while I struggle to find the answer as to how I’m hanging in.

Perhaps passion is part of the plan. In the meantime, West Ham are surviving in the play-offs and I want to see them play in the Premiership next year. Maybe it’s not only a game.

 

      

 

The Ketogenic Diet – and “Thank Yous”

12 Mar

Firstly, let me say thank you to Libby, from Austria, who pointed out that the web page for the link I’ve been giving to the ketogenic diet is no longer available. I referred to the link a couple of times in a footnote. I like my footnotes. Ever since I saw Josef Kedar’s superb movie of the same name, “Footnotes”, something has changed. If previously I had a tendency to pass them over – especially in technical or academic articles – today I’m more aware. I’m rambling – but that could be the result of the change in treatment over the last few weeks.

As I’ve mentioned I’ve done with 5-F-U (or vice versa). For the last few weeks I’ve been on a weekly infusion of Gemcitobene and one pill of Tarceva a day. The side effects have been debilitating. Which brings me to my second thank you. I literally “cried off” my Sunday game of golf. Karl was again my saviour. Doubled over in pain, and trying hard to hide my tears, he helped as only a true friend can. There are no words of thanks for good deeds.  This illness has certainly given me the perspective of being able to look around and see the best out of so many situations.

So why is the world in such a mess – especially in our corner of it? It’s easy to say that “it’s complicated” or “there’re always two sides to a story”. But somehow I seem to see things in much sharper focus. Should I share these thoughts with you – or keep my blog as I intended it – to help other cancer sufferers, pancreatic cancer patients in particular? An open question – perhaps you’ll oblige me with some open answers.

In the meantime, I’ll stick to the ketogenic diet. Here’s Libby’s link: 

http://lchf.de/wp-content/uploads/2011/06/ketogene_ernaehrung_bei_krebs.pdf . It’s great if you speak German – a tad difficult if you don’t. Skip down to page 19 to find lots of links to interesting recipes – but again in German.

More helpful for my English-only readers is a link forwarded to me by my indefatigable sister-in-law-researcher, Sheila, who has come up with a site that gives a clear (if not new) insight to the diet:

http://www.drbriffa.com/2011/11/29/low-carbohydrate-diets-look-good-for-the-prevention-and-treatment-of-cancer . Sheila, thanks for your continuing support and research.

Why the ketogenic diet? It might just be that my bad side-effects to Tarceva were limited by my diet. I’ll never know. I was warned that Tarceva would be a waste of time. That’s another thing I won’t know. A two-week treatment break and a chance to break new ground with Abraxane is next on the agenda. Suddenly I’ve got the urge to keep the fight going.

Conclusions in Canada

22 Feb

As Pam’s tour comes to a close, I find it difficult to come to a conclusion about my cancer experience in Canada. Perhaps allowing myself to believe that this is a “developing story” is the best outcome.

The fact that I was able to accompany Pam – and not impede any of her activities – was pure magic for me. And like her book tour, I would like to think that opportunities are opening up, new contacts have been made and there’s plenty to be done.

The “Canada Cancer Experience” was not to be. I’ve blogged about that; my blood count came up short at an inopportune moment – which may have been a blessing in disguise. Two treatments would have probably been two too many and too ambitious by far. Who knows? I just have to keep pushing forward.

Meeting my guardian angel, Agi, was a highlight – and like life itself, who knows where this new-found friendship will lead.

Then there’s always the quirks and curios. I met a couple of people who told me I looked so much better than they expected. On the face of it that sounds nice – so I thanked them. But what sort of face were they actually expecting? Then there was the waiter in the restaurant last night – very professional and polite. We told him I was on the ketogenic diet. Like so many other restauranteurs he took great pains to be sympathetic to my dietary requirements. But with his knowledge came a certain look – further illustrated by the exaggerated, quizzical way he wished me well and hoped I’d be back. He even gave me a bottle of spices – a farewell present?

And talking of presents – I bought myself one (or two) and managed to surprise the wife… I went to “hellandgone” to buy a new golf bag, golf shoes and gloves. Wow, said an amazed Pam… as she wished me many long seasons ahead. The real surprise was the sales assistant. Married to a kibbutznik, former kibbutznik himself with a haredi brother in near Modi’in…

Am Isra’el chi… 

The Impossible Dream

15 Feb

Before I got sick I used to dream of playing golf on courses round the world. I’m not one of those people who need “separate” holidays – far from it. Pam was prepared to put up with being my caddy on the rare occasions golf fitted into our travel plans. That dream replaced my boyhood one of years ago in the days when Weeks, Worrell and Walcott [22] were West Indian sporting legends. Cricket was my craving and the Caribbean the epicenter of my world.

How life turns one upside down. A couple of postings ago I touched on the problem of treatments. My decision to go to Canada was partially based on Keith’s ability to set up treatments in Vancouver and Toronto. Yesterday Keith took me to Lions Gate Hospital for a treatment. Was my golf dream being replaced by an inter-continental tour of cancer centres? First Vancouver, then oncology in Ontario? Was this really going to be a first? It’s difficult enough to psych oneself up for a regular treatment – I’ve told you about my “Tel Hashomer Syndrome”. But as we drove to the hospital, my mind was meandering. Even fantasizing. Could I really be thinking in terms of writing a best-selling book “Guide to Inter-continental  Cancer Centres” – based on personal experience? Come on, I mean we’ve got Lonely Planet, the Michelin Guide…

We get to the oncology department and I’m making mental notes of the differences between Lions Gate and Tel Hashomer. The first thing I notice is the donors’ plaque; a mere four names on the board. Topping the list: “The Estate of Hossein Tehrani”[23] . Then there was the patient-bed and/or couch ratio. About 1:5 at Lions Gate compared to 5:1 on occasions at Tel Hashomer. I’m getting carried away….

How life continues to turn you upside down. The oncology doctor pulls out my blood results from the previous day. For the first time ever, my blood count is too low for a treatment. I’m dumped down to earth with a bang. Literally. It takes more than a moment to get myself together. Then the oncologist, Pam, Keith and I reach the inevitable conclusion – to accept that there will be no treatment.

The dream is impossible. But it’s Valentine’s Day in Vancouver. At least I managed to surprise Pam… but that’s a different story.


[22] In the 1950’s Everton Weeks, Frank Worrell and Clyde Walcott were known in the cricketing world as “The three W’s” from the West Indies. Was there ever such a great sports team or was it an illusion of my youth?

[23] Hossein Tehrani was born in Tehran, Iran (formerly Persia) in 1912 and died February 25th 1974. According to Wikipaedia, he was a musician and father of the “tonbak” – otherwise known as a simple clay vase covered at one end by a skin.