Archive | November, 2012

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.

Has Keith Helped Me to Turn the Corner?

23 Nov

Keith is leaving early tomorrow morning.  What brilliant timing for a visit.  Although any visit at any time from Keith would be amazing.  He’s just that sort of guy.  And I have the luck to be his brother-in-law … and he’s left me in better shape than when he arrived.

With regard to “turning the corner” – that’s a complicated matter.  Geometrically it might be a great analogy.  My clinical condition continues to deteriorate in a downward straight line.  My movement is miniscule and I spend most of my day (and night) in my reclining couch.  So we’d have to turn a corner for any dramatic change.  But you know my philosophy: life is a continuous cycle, going round and round.  We just don’t know whether we’re at the bottom, ready to swing back up, or vice versa.

The signs are pretty ominous, although each sign may well be one more crutch.  “Wheelchair” sounded bad, but it serves me well in getting to the beach and enjoying nature.  “Oxygen” sounds even worse, but having the admin behind us and a cannister on call (for the odd puff now and again) certainly makes for common sense.  “Morphine” sounds as low as one can go.  But using the right-sized patch has proven a blessing.

So, who knows?  At least I’ve still got the patience to wait and see – and to wait for Keith’s next visit.

Keith’s come over from Canada

18 Nov

Keith arrived last night from Vancouver.

I might just use the blog as an ‘updater’ while he’s here rather than posting my normal blog.

I might also be a little indulgent and ask that you channel your interest by email rather than calling, even though I myself am getting to the keyboard less at the moment.  So email Pam; she passes on all the messages to me.

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

Hello Again

1 Nov

It’s hard to believe that I’ve been on the PARPS for three weeks. It would be even harder to describe what’s being going on during that time. Most of it has been pretty negative and I’ve been too exhausted to tell you.

But I’ve been so touched and encouraged by your support – those that have wanted to visit, keep phoning or those whose emails I’ve failed to answer – that I have to get back to the keyboard. Hopefully, there’ll be lots to share with you in the future.

I had thought of using the blog merely as a means of updating you – but perhaps at another stage. For the moment I’d like to keep to my mandate of fighting this awful illness.

The euphoria of receiving the PARPS receded as pain seemed to take over almost immediately. But the following day, we’d been invited to a seventieth birthday party of one my golf partners – a retired surgeon. Against Pam’s better judgement, I prevailed upon her to go. It was a last minute decision.

As fate would have it, I sat next to one of my host’s long-time work colleagues. We start talking and, looking as I did, the conversation soon turned to my illness. He just “happened to be” co-ordinator of a massive EU funded project that is out to find early-detection for pancreatic cancer!

This most remarkable man, Prof Louis Shenkman, tells me about the project: four years to investigate pathways of cancer – and hence lead the team to a cure. The “team” is being led by the Nano-technology Department of Bar-Ilan University; 19 members, including three other Israeli universities, one from Russia and the rest from the European Union. What is fascinating to Prof Shenkman is the fact that most of the personnel involved are scientists who have little or no contact with patients. He himself, while still a practicing doctor, admitted that he hadn’t before had such a heart-to-heart discussion with a potential “end-user”. He persuaded me how our few words were added incentive to ensure that the team beat their “deadline”.

By co-incidence, he tells me, he was travelling the next day to Europe for a meeting with the team leaders. After eighteen months work, the SaveMe Project has reached a cross-road for decision making; finalising the short list of the paths they will follow. They know they’re on the right trail. He asks me whether he can quote part of our discussion in his opening address. I’m knocked out.

I tell him that I had to wait two years for the PARPS. If his team comes up with the solution in another two and half years – I’m prepared to wait around for it. In view of what’s been happening in the last three weeks that’s one hell of a challenge. Let’s all hope we’re up for it.

Check out the “SaveMe Project”. The link is   http://fp7-saveme.com/index.php?option=com_content&view=article&id=1&Itemid=1