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Catching One’s Breath?

29 Nov

Is catching one’s breath an issue?  No, if it was only a matter of simple breathing.  But in my case breathing has become complicated.  My lung capacity has become seriously impaired.  The difficult, if not impossible, question in this blog is really “What IS the catch?”  The answer is clinically unclear.  It lies within the until now unknown realms of the pneumo-thorax.  I’ve chosen not to share any further details of this one with you at this stage.

The reality is that this is the first blog that I’ve asked Pam to post, based on what I jotted down on paper, sitting in my chair.  Going to the computer is too much of a burden tonight, after a long day in Tel Hashomer Hospital.  But tomorrow is another day.  I wait to see what it holds.

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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.     

 

Medical Marijuana – Important Update

10 Nov

Pain sufferers and pancreatic cancer patients in particular must keep themselves updated on medical marijuana. Here’s to trying to help you – through my own experience.

It’s no great secret that my clinical condition has been going from bad to worse. Ascites is one of my major problems at the moment and I’m in and out of hospital to have my peritoneal cavity drained. Aspiration gives instant pain relief which lasts all too briefly. In the two parallel fights between my physical and mental conditions, two giants contriving against me are exhaustion and pain. They are inextricably intertwined. They combine to make things worse. Pain – which cannot be relieved; pressure which is relentless; pain-killers that often have worse side-effects than the original pain itself. Exhaustion of such intensity that I’m simply too tired to sleep or too anxious even to crawl into bed.

How can one battle all this? Pain control must be one of the key elements. Medical marijuana is a miracle becoming more available.

One of my daughters has always been singing its praises. So has my brother-in-law, Keith – he recently sent me this link to an interesting article from The Vancouver Globe and Mail, “Support growing for medical marijuana in Israel”: http://www.theglobeandmail.com/news/world/support-growing-for-medical-marijuana-in-israel/article4901847/

Last Monday, I restarted taking medical cannabis. I am now witness as to how it can help. It’s only been a few days but the results have been dramatic and give hope. I’ve eliminated some of the trouble-giving pain-killing medication already. I stopped taking SOS pain-killers almost immediately. My digestive system is more regular (although eating remains a problem) and last night I slept for more hours and in a position I have not achieved for over a month. Position? I simply mean lying down on my back in my bed… how we take things for granted.

A couple of weeks ago there was enormous media hype here on the latest generation of legalized medical marijuana products. The cannabis leaves are treated in such a way that addiction and the making you “high” elements have been eliminated. I take it in drop format. Go visit the company making lots of the news, Tikun Olam:http://www.tikun-olam.co.il/tikun/olam/-/english.html

Going back to medical marijuana – or should I say moving forward with it – was well overdue. It also makes me think of my other brother-in-law, Philip, and our abortive attempt for me to try it just over a year ago. And it brings to mind one of my favorite blogs, “CAN CANcer be fun?” from 12 January 2012. Give yourselves a happy moment. Just to remind you, the gentleman on the left is yours truly, and my dancing partner, the incomparable PIP. Enjoy http://sendables.jibjab.com/view/g6hI6KIv63g76o1ZHRgg

I cannot thank my brothers-in-law enough at this moment.

Fellow pancreatic cancer sufferers, my recommendation is to try the new generation of medical marijuana.  

 

November

4 Nov

November should be a month of “celebration”.

Two years, ago, on 1/11/2010, Professor Ben Novis gave me his fateful diagnosis. Considering the original prognosis of six months – there certainly is something to celebrate.

Today is my 64th birthday. Having seen the Beatles sing their iconic song on the subject – live at Hammersmith Odeon almost 50 years ago – this year has a special meaning for me.

It seems as though more people than I could ever have believed have sent – or are trying to reach me to send – good wishes. I’m overwhelmed. I’d love to thank each and every one of you individually. But unfortunately, I just can’t do that this year. Please God next year.

In two weeks, it’ll be the first anniversary of this blog. Of all the many positive things that have come out of the blog, there is one of which I’m particularly proud to be a part. My first oncologist, Ido Wolf, M.D., Senior Lecturer, Tel Aviv University at Tel Aviv Sourasky Medical Center’s Oncology Department, received a not insubstantial grant from the Hirshberg Foundation for Pancreatic Cancer, based on his research thesis: “The hormone klotho: a novel regulator of the ERK1/2 cascade in pancreatic adenocarcinoma”.

Please refer to the link:

http://www.pancreatic.org/site/apps/nlnet/content2.aspx?c=htJYJ8MPIwE&b=2466459&ct=12327095&notoc=1

Breaking News – The PARPS Have Arrived

11 Oct

The long awaited Parps[1], otherwise known as the “wonder” drug, are safely in my trembling hands. “Wonder” that is, as in “I wonder if they’ll do the trick?”

The complete story is too long to share with you in this particular blog. In any event I’m too emotionally drained at the moment. There are so many people I feel I have to thank first – yet cannot begin to mention everyone.

First and foremost, thanks to my oncologist, Dr Talia Golan, who took on the seemingly impossible to give me this life-saving chance. Thanks to Abbott Laboratories[2] for granting me their experimental drug. It was only today that I found out that I’m the only person in Israel that has been granted the drug on compassionate grounds – and I may well be the only person in the world given the opportunity outside of the Abbott trial.

Pam’s tenacity has no words that can be written to thank her.

Driving back from Tel Hashomer Hospital, my head was in a total spin. Bizarre things came to mind. Neil Armstrong, the man lucky enough to be first on the moon. His namesake, Lance Armstrong, a man who successfully battled cancer only to become embroiled in an on-going drug-abuse scandal. And as Pam, so correctly suggested, the drive home was reminiscent of bringing our daughters home from birth – a surreal drive with a cargo too precious for words.

For the record, I’ll be popping the PARP pills at 12 hourly intervals – starting at 19:00 local time tonight.

Let’s hope this breaking story will have a happy ending… in a long time to come.

 

 

 

 

 

 


[1] Veliparib, or ABT-888, is an orally active poly (ADP-ribose) polymerase potent inhibitor of both PARP-1 and PARP-2 that potentiates DNA-damaging agents in preclinical tumors.

My Favourite Feast – Non-Ketogenic

4 Oct

The festival of Tabernacles has long been my favourite. It goes back to my childhood. Both my brother and sister now fondly remember “how we helped schlep the (wall) panels of the succa (booth) from the garage to the patio, bolt the pieces together and close the roof! Also sitting in overcoats at night with the heater on – magical!”  My late father was probably the first, certainly in our suburb of London, to have hand-made his own succa, replete with floor and opening roof. For years it served as the centre piece of my parents’ socializing; an annual gathering after the Festival services.

We’ve come a long way in the fifty (almost sixty) years since then. I’ve managed to reinvent my own succa-building tradition in Israel – in a slightly more “hands-on” manner – using the help of Pam’s every increasing next generation of little cousins. And our succa also allows us the opportunity to welcome friends.

This year, however, I felt a change of mindset. For some reason I wanted to read more about the festival of Tabernacles and its concept of rejoicing. I looked up the biblical text of Deuteronomy 16: 13-15: “And you shall rejoice in your feast, you and your son, and your daughter, and your manservant, and your maidservant, and the Levite, and the stranger, and the fatherless and the widow… and you shall be altogether joyful.”

Rabbi Shlomo Riskin wrote about the festival in The Jerusalem Post this week. He pointed out that the Bible “is teaching us the sequence of joy. A person must be able to rejoice, first of all, with himself, with his own development, growth and accomplishments. Then with his family, the people who are closest to him, and finally his community. One has to appreciate what one has and share it with others.”

On the one hand, how apt and timely I find Riskin’s words. He seemed to summarize my feeling exactly. I sit in my succa thinking through my situation and realizing how much happiness I’ve found in the past year. How my family has helped me and how friends have rallied round. The humility of the succa’s flimsy surrounds seemed to envelop me.

But on the other hand, I found myself thinking that in some ways I’m a bit of a fraud. How nice it’s been that I’ve chirped away on my blog and have received accolades from people I’ve “helped”. They’ve being telling me how much pain they’re suffering and how tiredness and lethargy completely overwhelms them. Only in the last few weeks have I realized that the “words of wisdom” I was waffling about came from a place of less pain, less discomfort and far more energy. Recently I’ve been far closer to the conditions they were suffering – and couldn’t do much to help myself. The feast of Tabernacles comes along and puts things in perspective for me.

I realize that this illness is not going away and has depths that I can’t imagine. My succa made me realize that everything has proportions.  But thankfully I’ve been feeling better over the last few days – and this respite from pain allows me to post this blog.

Happy New Year

13 Sep

To all my blog readers – Happy, Happy New Year, filled with hope, health and happiness whenever and wherever you can get it.

To those to whom I’ve been short over the year – and the list is probably too long – this is the time to proffer my apologies.

And finally, to fellow pancreatic cancer sufferers, I wish you the strength and courage to keep fighting.

May we all be inscribed in the Book of Life.