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!

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.

 

Angels for Talia

Dear 'Cancer Crossing' Friends,

A young girl needs your thoughts and prayers. 

She is barely 13 and has been battling cancer for 6 years.

We have no direct connection to her but have been following her story for over a year now.

She lives in the United States and aspires to be a make up artist.

She has a YouTube Channel called 'Taliajoy18'.  You can go to YouTube and view her videos if you are interested.

The purpose of this post is to ask you to 'Like' the Facebook Page, 'Angels for Talia' (if you have Facebook).

Talia has been in the hospital a couple of months now.  She is very, very, ill.

On the 'Angels for Talia' Facebook page you can learn more about her and will also find her Bucket List.

Since last week, people all over the globe have been doing items on her Bucket List and sending the photos in for Talia to see.   Those photos are on the Facebook page as well.

No one should have to deal with cancer, let alone a child.  Talia has been so incredibly positive, energetic and inspirational through all of this.   Just view one of her YouTube videos for a couple of minutes and you will see.

Please 'Like' the 'Angels for Talia' page and send her your thoughts and prayers.  Maybe you will be inspired to complete an item on her Bucket List and know you have helped to make a young girls wish come true.

 

COPING WITH GRIEF

Have you had to deal with the death of someone close to you?  If so, how do you deal with the grief?  Let's face it, probably poorly.

 

Grief can be overwhelming, many times to the point where you can no longer function effectively in your life.  Your job suffers, your relationships suffer, your own quality of life begins to suffer.  You begin to sleep to avoid dealing with  your day to day, and/or you are short tempered and snap at others.  You know you aren't yourself, you know you are missing the one you've lost.  You feel rudderless in a small vessel on the wide open ocean.

How do you make a come back?  How can you once again, engage yourself in life?  How can you laugh and smile and feel good about things?

Much depends on the circumstances surrounding the death of that person close to you.   At 'Cancer Crossing' we are learning that the cancer patients facing their own death, repeatedly put forth the wish that once they are gone, their loved ones don't end up in a circle of grief that puts their own lives on hold.  It is worth repeating - we hear this time and again. 

Why do you think this would be a constant theme amongst late stage cancer patients?  Do you think they are just saying it to make their loved ones feel better?  The answer is no.  The wish is heartfelt and sincere. 

How can that be?

If you have ever cared for a late stage cancer patient,  as they lay there quietly,  you probably wonder what is going through their mind.  You probably feel compelled to ask, 'Are you okay?'.  They will turn to you and nod gently.   If it turns out that the patients cancer is no longer treatable and they are going to die from the disease, their mind plays 'catch up' to their body.  The body goes from 'fight' mode to 'accept' mode and the 'accept' mode is an okay place.  Patients in 'accept' mode accept the fact they will soon die and it's okay with them.  As they lie quietly, they reconcile their life as a whole and the relationships important to them.  In their own way, they tie up emotional loose ends and in their own way, say good bye to their loved ones.   They try and remember the smell of the rain, of the grass and of flowers.  They try and remember the blue of the sky and the sound of the rain.  They pray.  They look into the faces of their loved ones and feel at peace. 

Once they pass on, even though loved ones knew the person was going to die, it is still overwhelming and the grief begins to take hold.  Why is this?  At 'Cancer Crossing', we are not experts on this subject but through our interviews it would appear that it is only the cancer patient who moves into 'acceptance mode'.  Family and friends still hold out hope that the patient will get better.  Even though the doctors have said nothing more can be done and the patient is undergoing palliative care or is in hospice care, they still hold out hope.  The pain and grief on the loss of the person is so acute because true 'acceptance mode' can only be achieved by the terminally ill person. 

So you cry, and you mourn and you sleep and you snap.  Some days are better than others but so many days are bad. The last thing a person who has lost their life to cancer would want is to have their loved ones miss out on their own life, grieving for what they have lost.   Some say that if you make the motion to smile, the feeling behind the smile will eventually come.   There is a saying (there are so many aren't there?  Probably for a reason!), and the saying goes: 'Don't cry for what has been lost, smile for what was'.

 

 

SAYING GOODBYE TO ZAHRA

Zahra was a young woman in her mid-thirties when she came to Canada with her mother, sister and brother in 2007.

Zahra's family are Muslim, originally from Afghanistan but spent the 16 years prior to immigrating to Canada in Iran.

They came to Canada for a new life, hope for a brighter future.  They were very poor in Afghanistan and Iran.  There was little opportunity, especially for women.

Here is a photo of Zahra (her family's favourite one of her) laid against the pages of the Koran, the book of Zahra's Muslim religion and the book that Zahra read and prayed with daily.

The family was just beginning to find their feet when Zahra was diagnosed with Stage IV cancer.  She began aggressive chemotherapy.  This is where this writer comes in.  I met Zahra and her sister Salimeh in the cancer treatment centre waiting room in early 2009.  We struck up a conversation.  The two barely spoke English but were both smiling and had such agreeable dispositions.  I was drawn to them but I cannot say why.

We learned that Zahra and I shared the same Oncologist.  We also learned that we were both on long term treatment regimens.  Coincidently, our quarterly scans fell pretty close together with Zahra a month or so ahead of me.  We also often shared the same treatment day.  I felt close to Zahra and Salimeh. 

November 2009 came and it was a rare occasion where Salimeh was not by Zahra's side.  Zahra asked me in her broken English how much a funeral cost here?  I told her I didn't know.  I said the cost probably varies a lot depending on whether  you are cremated or not.  If not, you'd need to buy a casket and I hear those are expensive.  She said that in her religion, there is no cremation or casket, you are simply laid in the ground and buried.  I had never heard of this.  I told her I didn't know.  Zahra then said she was tired and was ready to die.  She said she prayed everyday to die but is still alive.  I told her then it was probably not her time to go.  She said she was thinking of stopping treatment, it made her tired and she wanted to die.

She looked tired but at the same time, at peace.  I told her that I was not ready to die, that I am going to keep fighting.  One of our names was called to go into the treatment room.  We said goodbye and we both knew it was forever.  I thought of Zahra so many times over the next year.  I looked for her in the treatment room.  I didn't really know how to spell her name so couldn't check the obituaries.  I believed Zahra was gone.

Fall 2010 arrives and one day, as I am leaving the treatment room, who do I run into in the waiting room?  Zahra and Salimeh!  I must of looked at Zahra as though I'd seen a ghost because she looked at me as though she'd seen a ghost.  We hugged and cried.  Salimeh was crying.  There were hugs and  tears all around.   I told her I thought she'd died.  She laughed and said she thought I'd died.  We giggled like school girls.  At that point I realized the waiting room was full, and all eyes were on us.   What were other people thinking I wondered?  Here we were laughing about each of us thinking the other were dead.  It made me think of 'a joke' that long term cancer patients often say to one another when they haven't crossed paths in awhile.  You say, 'You still here?!'  It's always funny because the phrase has double meaning - one is, 'you are still in treatment?!', the other is - 'you're still alive?!'.  It's only funny if you are a long term cancer patient though.

We hugged and said goodbye.  This time I thought I'd see her again.  She hadn't changed a bit. 

I didn't see Zahra after then and later I came to learn that in November of 2011, Zahra had died.  I was overwhelmed by emotion.  Even though in 2009 Zahra herself told me she was ready to die, prayed to die, and I knew in my heart she was at peace, I felt so sad for her sister, her mother and her brother.  They came to Canada with such hopes and dreams for a new life but instead faced sickness and death.  I remember when I first met Zahra, she was in English school but soon dropped out when her sickness made her unable to carry on.  Hopes dashed, a young woman's life snuffed out. 

Goodbye sweet, smiling Zahra. 

I was overcome with grief - for the future Zahra would not have, for her sister who was by her side every step of the way, for her mother who had lost her husband only a few years before and now a child, and for her brother, a young man in a new country trying to find his way.  It was as though a cloud of darkness had settled over me.

Stay tuned for our upcoming post, 'Coping with Grief'.

 

ANGELINA JOLIE - A UNIQUE HEROINE? WE KNOW FIVE OTHERS.

There has been much ado in the media recently over Angelina Jolie and her discovery that she carries the BRCA gene, making her more likely than not to develop breast cancer at some time in her life.

As a result, Angelina opted for a double mastectomy with reconstruction, to dramatically lower her odds of developing breast cancer down the road. 

Angelina ostensibly underwent the genetic testing to determine if she carried the gene as her mother succumbed to ovarian cancer in 2007, and we have now learned of the death of her aunt (her mother’s sister), from breast cancer just weeks ago - and she carried the gene.

The BRCA gene makes one at high risk for both breast and ovarian cancer.

Angelina has been portrayed in the media with countless faces – for her beauty, her acting skills, her devotion to family, her relationship with Brad Pitt.  There has been much criticism (jealousy?) along the way of her weight, her lips, her legs, her beauty, her acting skills, her devotion to family, her relationship with Brad Pitt. 

She has never been portrayed as an out and out Heroine, until now though.  She is now being heralded over her bravery of getting the genetic testing done; digesting the results; making the tough decision on what steps to take to help ensure she lives long and prospers without cancer; undergoing the double mastectomy pre-op procedures; the actual surgery; the post-surgical drains and recovery process.  She is reportedly looking into the removal of her ovaries to eradicate the odds of her developing ovarian cancer.

Wow, what a lady!  What an unusual and outstanding woman……..or is she?

Here at Cancer Crossing, five women we know, immediately come to mind.  Two of the women tested positive for the BRCA gene (after developing breast cancer already) and had the double mastectomy surgery with reconstruction.
One has recently been diagnosed with the BRCA gene (after developing ovarian cancer) and is on the surgical consultation list for double mastectomy/reconstruction.
Two other women we know have opted for the double mastectomy with reconstruction not because of the BRCA gene, but because they had developed breast cancer in one breast and facing a single mastectomy, made the decision to opt for the double mastectomy as it gave them a greater sense of comfort they would not have to deal with breast cancer again.

Has the media reported on the Heroism of any of these women?  No.

These women underwent, or are undergoing these procedures in Winnipeg without the enormous financial resources Angelina has available to assist her through this difficult time.  Angelina has the resources to allow for the time she required to be away from work.  She has the resources to assist with child care.  She has the resources for psychiatric help should she need it through this challenging time.  Angelina has the resources for immediate action on her case. 

These are resources our five women did not/do not, necessarily have available while undergoing their double mastectomies and reconstruction.   Our women had to get cancer to discover the gene or to make the double mastectomy/reconstruction decision for their own peace of mind.  These women, and any and all cancer patients dealing with their own unique cancer experience, are the patients we at Cancer Crossing are looking to create a fund to support. 

Is Angelina a Heroine?  Yes, because she is able to raise public awareness on the BRCA gene and the double mastectomy/reconstruction procedure with lightning speed, which can only be a good thing. 
Here at Cancer Crossing though, we think the real Heroine’s in this story are our five ladies, who dealt with/are dealing with, all that Angelina has and more.  Where are these women?  Obviously if we know five, there are undoubtedly thousands or tens of thousands of these ladies.  They are in your workplace, at social events, at the grocery store and at the shopping mall ticking off the items on their ‘to do’ list because life carries on, and the ‘inbox’ is always full.  They are hard to detect because they quietly stare cancer in the eye and fight with an intimate circle of supporters.  No paparazzi, no fanfare, just Bravery.

WHAT ABOUT RELIGION?

What role does Religion play for  those dealing with cancer?

Generally speaking, there are 3 types of 'Faith'.  One is the belief in a God (or some other figurehead of an organized religion).  Another is 'no Faith', those being Atheists.  Finally there are those who aren't sure.

At 'Cancer Crossing', the question of cancer and religion comes up in almost every interview.  It is probably one of the most complex aspects of every interview as well.

Some feel that God has struck them or a loved one down with cancer because their faith had not been strong enough.  They did not attend enough services or they had impure thoughts, so they are deserving of such bad things as cancer. 

'I deserve this.'

Some feel they followed the teachings of the faith yet got cancer.  They feel as though God has done them wrong and their faith has been shaken.  They wonder why did they put so much time and energy into their religion and in return they get cancer?  Shouldn't you be rewarded with good fortune (health, happiness, income, etc..) if you do good by the Church? 

'Why did I bother?'

Some didn't participate in organized religion prior to cancer and with cancer, they still don't.  There is a certain 'matter of factness' to these people.  See a doctor and get it fixed.  If it can't be fixed, take care of your business and prepare.

'It is what it is.'

Others feel that 'it is God's will'.  They believe that God has a plan for everyone and there is a reason they have been chosen to deal with cancer.  They pray for better health but also pray that when it is time for them to leave this life and be with their God, they be granted mercy and their loved ones left behind celebrate their life and not mourn their loss.

'Peace be with you.'

Many people don't know what to believe.  They didn't know what to believe before cancer and with cancer, still don't know.  They look across all religions for something they can identify with.  They try to reason with themselves that this life is all there is and there is nothing in the hereafter but eventually  circle back to 'What if...?'

Ultimately, people are looking for reconciliation.  They want a sense that their life had a purpose.  Most don't feel they need to leave behind a 'Grand Persona' that will be talked about in the history books forever.  In the big picture of life, most are content with the smaller things.   To know they have imparted some wisdom they have accumulated over the years to others along the way, leaves one with a sense of richness.   

'I deserve this.',

'Why did I bother?',

'It is what it is.',

'Peace be with you.' 

'What if...?' 

The Ultimate Answer may only be known by those who have passed on before us but while we are here, living this life, we all try and find our own way as best we can.  There is a saying, 'onward through the fog'.  That's a good saying.