Monday 30 September 2013

GUEST BLOGGER - HAROON KHAN (SENT TO THE WRONG SPECIALIST!)


What if you had cancer --- in Australia?
Haroon does.  If you have been following our page for a long time, you might remember Haroon.  He was one of our first posts.  Back then, we were just getting our page going - posting photos with a few sentences.  

We'd like to tell you a bit more about Haroon, and who better to tell you than Haroon himself?!  This post is the kick off to our 'Guest Blogger' series.   From time to time we will have Guest Bloggers who will, in their own words, give you their run down on a situation. 

Most of our readers are in Canada but we have noted we also have regular readers from across the globe.  If you or a loved one has received, or is receiving cancer treatment, no doubt you have run across circumstances where things have gotten mixed up.  Mixed up appointment times, mixed messages from your doctors/nurses on the status of your case, diagnostic technicians giving you 'the look' that makes you paranoid...  At those times  you think, 'if only' I were in (insert the country of your choice here), things would not get 'fouled up' as they do 'here'.

We asked Haroon if he would prepare a few words on what cancer treatment has been like for him in Australia.  Here is what he said:

"Australia's Heath care system for cancer patients? Better than I thought, it turned out.

After the initial shock of being diagnosed with cancer I got caught up in the confusing whirlwind of seeing different specialists, getting various scans, tests, being prodded & poked & had needles stuck in me. The needles thing (FNA - Fine Needle Aspiration if anyone's interested) happened twice, because the first time I was sent to the wrong specialist; she was more used to dealing with pregnant mothers! 
So my wife and I soon got very frustrated with the whole thing, thinking it was all the fault of the medical system for not getting their act together, explaining what they were doing properly and seemingly leaving all the coordination to us. I have since learned that this is the usual impression of most cancer patients everywhere. When it come down to it, the doctors knew exactly what they were doing, the medical profession moved very quickly and I got my vital operation almost before I knew what was happening.

The specialist who followed up on my case seemed very serious & promised to watch me like a hawk for the next few years. In fact he has a sense of humour, is quite approachable and finds time for our thousand and one questions whenever we see him. I have met other patients and most of them seem to feel they have received good care too. So, all in all, Australia's health care system seems to work quite well."

This gives perspective doesn't it?  It seems when you are in the thick of your diagnostics and your treatment plan is being determined, there is so much uncertainty.  You become acutely aware of inefficiencies in the system and you get cranky for being 'shoved around' like a nameless, faceless, entity.  Sometimes you feel like no one cares and you are one of the people who have 'fallen through a crack'.  You don't fully appreciate that odds are, there is actually a health care 'team' working on your case.  No system is perfect.  No health care team is perfect.  Whether your health care system is universal or 'pay as you go', no matter where in world you are, when you look back, you will likely realize you had better care than you thought you did, but of utmost importance is that you, or someone close to you, act as an advocate on your behalf within the system.  It helps to smooth out the imperfections.

Thank you Haroon!

Monday 9 September 2013

ROSE - WAITING ON TEST RESULTS



Have you ever had to wait for medical test results?  Probably most of you have.  What runs through your mind?  The worst of course!

A quote from our lovely Rose; "After Thursday when I get my test results I will know if I have lots to look forward to".  Rose has 4 children, and many grandchildren, scattered across Canada and the United States.  A few years ago, miraculously, the family came together and a photo was taken.  Here is Rose with her much cherished image.

Rose is thinking the worst.  She has been diagnosed with 3 separate cancers.
"In 1994 I had kidney cancer and had a kidney removed.  In 2002 I had uterine cancer and everyone said, 'Oh you don't have to worry about cancer anymore you are Scot-free' and exactly 5 years to the day later I got lung cancer".

In 2010 she lost her husband Sam suddenly to a massive heart attack, and in the past year has had both hips replaced. 

She says she tries not to think about the tests and what the results may be but then says: "I think about it every... I try not to think about it but for this past week its been tough.  I ordered new glasses.  My son was in town so he took me to get my new glasses and I thought I shouldn't spend that kind of money you know.....because what if I get bad news, I will have wasted money on glasses I won't be needing for long....?  (Rose crying, wiping tears away).  But I did. 
People tell you, you should think positive.  I've been thinking positive since 1994 and look where it's gotten me and the last time I saw my Doctor, he said to me, 'I think this time we'll wait for six months between tests' and I said 'Oh thank God, I have less to worry about'.  He said, 'What do you mean?' and I said to him 'Well, I worry a little bit the last couple of weeks before test time'.
He gave me such a lecture.  He said 'I ride my bike to work everyday and I don't think I am going to get killed on my way to work' so I looked at him and said 'Doctor isn't that a little different than getting cancer?' and he said 'Same thing'!  Is it the same thing?  I don't know...."

Rose puts into words what so many are afraid to say - "....I will know if I have lots to look forward to".

Is there a way to cope while waiting on test results?  Some say it's the hardest part of the cancer experience - not knowing, but is knowing any better?  Certainly if you get good news then yes, knowing is better but what if you get bad news?  Is knowing still better?

From our interviews with patients we have found that yes, knowing (even bad news) is better than not knowing.
How could that be?
When you don't know, much like Rose said, you don't know if you have lots to look forward to but good or bad news, you have lots to look forward to because good news or bad news, you can form a plan, take action and harness some control over your situation, but waiting for test results leaves you in a suspended  state where living practically ceases and existing reigns supreme.

Is it better to live, or is it better to exist?  It's better to live of course! 
Some feel it would be better if you could get your test results quickly.  Sometimes they come quickly but sometimes they don't.  The longer the wait, the longer the patient is placed in 'nowhere land'.  The long wait can be a good thing though.  If the news isn't good, it gives the doctor a chance to review your case, meet with colleagues and form a plan of action so when you do have your appointment, much of the groundwork has already been done for you - a plan has begun, there is a future to look forward to.

Many jump to the 'worst case scenario'.  That is the scariest possibility and a place where patients waiting for test results tend to spend a lot of time.  At 'Cancer Crossing', we have interviewed several people who have received 'worst case scenario' news and each time we reconnect there are big hugs all around.  With any cancer diagnosis, there is always time for hugs, tears, laughs, reflection and making plans.  With a massive heart attack, you are gone in an instant.  Is that better?  Who is to know?

Cancer works in mysterious ways.  Carpe Diem is the saying.  Cancer or no cancer, everyone would be wise to Carpe Diem, each and every day.