What's the Point?.... (Part II)

So to continue the saga of What's the Point .....

Well, I made the decision that it was appropriate now that the tree was up to decorate it.    It wasn't as easy a task as it normally is.     Having to go through the various decoration, many which had been given to me by my mother over the years was stressful.   I could feel the tension in my shoulders and back as I would reach for different bobbles and place them on the tree.    It was a bit of a struggle  but in the end I was happy with the result......

So this little corner of my house looks very festive.   I did also make a decision that this was all that I would do....based on energy levels I had to realize that accepting my limitations is also a choice!!!!!

Christmas is a time to reflect.   It is not necessarily an easy time because often it brings to mind, people, events, memories that are hard to think about, but ultimately it is a time to look at our lives and count the blessings.    Not something we do very often in our society.   We tend to be looking more at what we don't have, or what we can't have, rather than all the things, people, gifts that we already have.    After this past week, with the tragedy that unfolded in Newtown, CT....I think just thanking God that my daughter is safe, has been able to grown up, is in itself my greatest blessing.

I wasn't going to write about this event but I have to make one comment.   I have cancer, and I have an incredible support system in place both personally and medically in order that I can deal with this disease.   There is no stigma attached to my disease.    I cannot say the same for all those millions of people who suffer from mental illness.    Although there are people, and places that are willing to help people with mental illness, it is such a stigma in our society that many will never get the help they need.   I believe that this young man suffered from mental illness.   It does not dismiss, or trivialize the terrible acts that he did, but we must realize that he is not the Evil people talk about.   The evil  is the disease, just as cancer is evil.   This makes it much harder to just pontificate about evil....it forces us to stop, and look, and then commit ourselves to finding an answer......otherwise we just ignore it till it happens,   Again.   So I  pray for this young man's soul, that God will forgive him, I pray for his father who is grieving the loss of both his son and his wife.   I also pray for all in Newtown that they will find the strength to heal, which at this point as a parent I can't even imagine how one does that!!!!!!

So, as we come to the Season of Joy, let us hug our loved ones a little tighter, smile at the stranger on the street, and give thanks for everything we already have.     May this season bless everyone with joy, love, and compassion.

Saying goodbye........

Its not often I feel such strong feelings of hate, but today that is how I feel.   I hate this disease...I hate it, I hate it, I hate it.      I seem to be able to deal with my own illness but it is when it come to others then my emotions just can't seem to be kept in check.   Today, another wonderful, beautiful woman has been taken far too soon because of this disease.   She wasn't young, but she certainly wasn't so old that her family didn't need her anymore.    My heart goes out to the family.   Not even a year ago they lost their father to cancer and now today they have said good bye to their mother.

As we age, life seems to become more and more unfair.   The people we love seem to leave and we are left with only memories.   I know that the circle of life is necessary but when it comes to this damn disease I have less ability to accept that this is 'just life'.

Cancer sucks, it takes away first your body, then your spirit, then your soul and finally your life.   I hate this disease........may you fly on angels wings to a better place, and may your children and grandchildren see your spirit in everything that reminds them of you......I loved you too...goodbye my friend.....

Cancer Donations......where is your money going???

I don't really feel like writing, but that is usually a good sign that I should.  I have always wanted to keep a journal but then I just stop writing.  I am trying really hard not to let that happen with my blog.  I enjoy doing this but at times it seem a bit like a job.   So I am going to write and about something very interesting that I listened to yesterday.

On a pod cast on CBC, from a show that was done about two weeks ago, they discussed where exactly our dollars go when we donate to cancer.   It was very educational although I was aware of some points.  The most important point that was made  is the cancers that get funded the most are not always the ones that are the worst.   I knew this to a certain degree b/c when I was diagnosed with Ovarian Cancer, I realized that there was not alot of information or awareness about this type of cancer with women and with family physicians.  It not only surprised me, but terrified me.  Why?   Because over 60% of those diagnosed will die from this disease in 12 months, after five years there are virtually no survivors. If people aren't even aware of how terrible and deadly this cancer is how can I possibly hope to survive it.   Of all the women's cancer Ovarian is the deadliest but, I am sure you guessed it, breast cancer is the most widely known and more common, and also the most to receive donations.    The question is 'do you know why?'.....because of the fact that there are more survivors!!!!!!!!!    Any cancer that has a lot of survivors (Prostate for men) is going to have the largest group of people speaking up for it and therefore making more noise in the public forum to get more money.    Don't get me wrong, I am not against breast cancer, well I might be just a little jealous, I keep saying that if I ever get breast cancer, I am going to claim that it MUST be metastized Ovarian cancer!

So we have very deadly cancers (there are over 200 diff kinds of cancer, each being essentially its own disease) which get virtually no funding from the public, less from government and of course even less from pharmacutical companies.    The public b/c we don't hear about them, the government b/c there are less peole living long enough to lobby them, and well we all know why not the pharmacutical company b/c it is in the business of making money and well there isn't money to be made when people are dying!!!

So, now that we know why, what can we do about it?  I will tell you what I did.... Well, when I was diagnosed, I started a support group for those diagnosed with it in order to bring people together.   It was successful but I must say within 2 years 29 women had died.   I also helped to organize fund raisers, one being a run that still occurs each May to this date.   One of the interesting things that happened was I found out that people are very territorial about their cancer.   When we approached CIBC to help us with the run (b/c they do the Run for the Cure) we found out they didn't want to help us b/c it might take away from their run......hmmmmm.   When we approached the Cancer Society we found out that 30% of the funds would be applied to a building fund before going anywhere else.   So, instead we started our own trust with LHSC so that all the funds would go to research, something that was not really going on too much.....because we all kept dying!!!!   For us, that was what was absolutely essential.....we needed to start surviving so that we could raise more money and awareness.

The very first year we did the run, many tried to make us be realistic and kept saying..."the little you will bring in won't really do much for research you know, maybe you should rethink how to disperse it"......well they all got to eat crow when we raised over 100,000 dollars that very first run.    To date I can't tell you the amount that has been raised (over 1/2 million dollars or so), but I can tell you that there is now a Chair for Research at LHSC and a doctor on staff who just researches Ovarian cancer.    In  just the past 14 years those researching Ovarian Cancer in Canada have gone from about 6 people to over 70 people.   One of the other things we did during the past 10 years is to bring awareness not only to the women (some of whom I am sure didn't even know that they had ovaries, they thought a hysterectomy took them out) but also to all the GP's in the London area.   We sent packages of info, we had cards made up, we did talks and showed videos, we went to Churches etc.
So that is what can be done for those cancers that kill so many that they fall off the radar.  But you have to know your stuff, research the charity, figure out what the money is going to.  

If you want to donate to a charity there is a web site called 'charity intelligence' which gives you an idea where the most dollars go and how they are spent.    It is very important to do research so that your dollars (which you have worked hard for) go to  a place that 'you' believe they will have the greatest effect'.   I am not advocating not donating to any one type of cancer, I just think that perhaps we need to be figuring out where our dollars are most needed.     Right now, the most dollars are going to those cancers that at this point in time have the lowest mortality rate, and the least are going to those that are killing the most people.    We can't depend on government, and certainly not pharmacutical companies to take the first step, so maybe we 'the public' can do something about this.

Well, I feel that I have vented enough.  If you are interested in listening to the podcast on CBC....you can find it at CBC.ca,   Sunday Edition, November 20, 2011, in the second hour.

So, now I will go and knit and figure out what I will write about next time....I will try to keep it a little lighter....:))

Steve Jobs....a very wise man!

Needless to say that the past few days have been interesting.   The death of Steve |Jobs has been on the news alot and his speech at the graduation is amazing.   He mentions that once you accept that you are  going to die, then you will realize that you really have nothing to lose in this life.   Go for it!  

The other thing that I heard was that he always believed that (had a premonition) he would die young.   I don't often share this but that rang very true for me.   Since I was a child, I have always had this feeling that I must do things now, because there was going to come a time when I wouldn't be able to.   In 1986, I had a spinal cord injury and many doctors told me I wouldn't walk again, or if I did it would be limited and with a cane.   I decided then that no one would every tell me what I could or could not do.  I would try and continue to try no matter what and was able to prove them wrong.  They also suggested that getting pregnant wouldn't necessarily be a good idea b/c of the injuries and the added weight that would put on my limbs etc.  Remember that was in 1986, alot has changed medically in regards to spinal cord injuries.   I didn't listen then either....and now have a beautiful daughter.  I can't imagine my life without her!   So many things in my life shouldn't have happened but did.......and it just reinforces that we do not know what we are capable of until we try.    Steve Jobs showed us that we are able to be productive, valuable human beings right up to the end no matter what life throws at us.....its all in how we see it....attitude, attitude, attitude, and a great deal of humility.   Jobs was quoted in an interview (one of very few he ever gave) that it isn't about revelling in what you have already accomplished, but rather always moving on to the next thing that you can accomplish...always moving forward.   Well, thank you Steve Jobs, for not only the amazing technology you have given us but more importantly the wisdom of living that you have also given us....may we all access your words of wisdom over and over again on the technology that you  will live forever on.     God bless and Rest easy.........look out God heaven will never be quite the same :)

The 'real' world of disability insurance!

Just when you think things are looking up something inevitably happens to make you realize that "Murphy's law' is always in effect.  Gilda Radner called her autobiography of her journey with ovarian cancer "It's Always Something" and I think that is true .....even in a life without cancer!

Today I received a phone call from my insurance company.   Now normally, that no longer makes me sweat and gives me hives as I have been dealing with them for 10 years and have finally past the point of thinking they are out to get me.   Well, it is amazing how quickly one reverts to old feelings!    The person on the other end was very nice, but also very new at least to me.  She informed me she was my new 'case  worker'., and my previous one was no longer with the company.     The questions they ask I am sure are form questions and used as a means of extracting the same information for each person.   I am also sure that the detached, if not sometimes totally bored, attitude they project is to keep them at an arms length as well as to seem professional.    BUT, is it really possible to ask a person such personal questions and not at least seem that you have some empathy and understanding.    This woman, as nice as she was, put me into an absolute state of frustration and made me feel that perhaps I shouldn't be just sitting at home.   I mean, she wanted to know why I felt I wasn't able to work, considering I seemed to have an active life as I went to a knitting group and a book club.  This she got out of me by asking me to give her an idea of how I spent my days....I guess I should have said lying in bed!   I tried to explain that a large part of my problem was 'fatique' which I think she heard as 'tired' and wanted to know if there were any other symptoms that I was experiencing besides this fatigue.?????    Then she mentioned that although I had tried to work in the past and hadn't been able to was I willing to try it again....at which time I informed her that it had taken me years to feel psychologically o.k with the fact that I couldn't work, considering our society sees people's value based on their productivity.   At which point she says "and what was it that you did at work that made it so difficult for you".....oh I don't know the physical, emotional, mental, psychological part of dealing with the fact that I had an incurable cancer and might die!!!!....I didn't say all of that but it was what I was thinking.

She also asked if the next appointment with my doctor would include a scan.  I just had one in August and had told her that so it surprised me when she asked.   I very quietly but forcefully informed her that I didn't have a scan at each appt (which she knew at this point was every two months) because the scans themselves have the possibility of giving you cancer!!!!!   DUH   Also, we already know the cancer is there so it isn't necessary.   Well when are you starting treatment she wanted to know....at which time I said when I am not feeling well.   She grabbed that line and said 'so at this time you are feeling fine, right?"   Yes I said except for the fact that I have extreme fatigue and my legs hurt from the neuropathy.   How bad do your legs hurt she said.....UGH  how I wanted to hang up...its like you are on a wall being hung by your toes and each time you answer another question they find away to tightened the screws......

Anyways, suffice it to say that I got off the phone feeling like crap.  I wondered if perhaps I should consider going back to work.....etc etc etc....then thought it is amazing how because I didn't die as scheduled people seem to think my life should just revert back to the good old days BC (remember before cancer).....I feel like just crawling into a hole and dying then maybe all these insurance  people will finally be happy that I am off the pay role. Makes you wonder if they get a bonus for each person they are able to get off disability!!!!!!   Oh what I would give to have my life back and not have to be so vulnerable to people on the end of the phone who will never know me except by name and policy number!!!!!

Dark vs light

I have been receiving some comments lately that I think are worth commenting on myself.  One of the things people have been saying to me is that my posts seem a little dark.   Yes they are a little dark.  As most people know the way I deal with anything really serious in my life is to be funny...I think it is the Irish in me...they have a very dark humour.    I haven't been my best lately and I have been putting down what is really going on in this brain of mine, in a serious way which may take some by surprise...I have always been dark but tried to be funny too.  I find it very cathartic and usually once I have put it into words I actually feel much better emotionally.   I am not a person who likes to wear my true feelings on my sleeve....I have a tendency to put on a happy face and look like I am always feeling good.  Usually, this type of behaviour really does help to make me feel good because I believe very strongly that what you put out into the universe you get back ten fold.   So even if I am not feeling as chipper as I may appear by the end of the day I  have often received so much positive energy that  spirit is almost the same on the inside as it appeared on the outside.

Long before I became ill I had been trying really hard to match my inside with the outside.   I have always been a very upbeat person but there was a time that that was more of a public persona than a personal one.   Over the years, through much reflection and 'therapy', I have come to really like who I am and so the person you see is most probably the person that I am that day.   If I am not feeling great I choose to stay away from others....I have a 'pity' party but I don't invite anyone else mainly b/c I don't want to be cheered up.

Over the past few months I have learned alot about myself and life in general.   I have been given moments of great sadness and great gladness....what I guess is the reality of life in general.  Yesterday, I had a day where I was able to see that life really is a character building event and one must choose how one is to negotiate it.   There are people that I know have gone through some very trying moments (or years) and yet are able to enjoy those times that have been good with gratitude and joy.    I met one such person yesterday.  I hadn't seen him in years and know that he was having a difficult time the last time I did talk to him.  He looked so happy and content that I just had to find out how things really were in his life.   He was able to tell me that at the moment things were good, he was really enjoying himself (he is recently retired) and that he just focuses on this time.   We talked about how some people just don't know what to do with themselves when they retire...but neither he nor I seemed to have that problem.  It was very refreshing to 'chin wag' with someone who lives in the moment and appreciates the good things that are happening rather than focusing on the past.

I have decided that I am very blessed and grateful for my life...although as I have said many times I really could have lived without the drama of Cancer.  It has taught me to appreciate just moments like yesterday and not get to wrapped up in the details.   So, today will be a good day no matter what it brings, although my plans are made and am looking forward to them.    I wish in some ways I could pass this wisdom on to many many people......whatever you must endure today do it with a song in your heart and do it with joy because the alternative to being here really stinks!!!!!!    Happy day everyone...and yes sometimes I am dark.....but that is the balance we need to enjoy the light.

Another death another lesson!

Seems that there is more time between postings as time goes on.  I have been sleeping alot lately which in my mind is a good thing.   I think I am catching up on 10 years of exhaustion and finally feeling o.k. about accepting the fact that I am truly 'sick and tired' of being 'sick and tired'.

Yesterday was a very difficult day on many levels though.   I had to attend a funeral and it was one of mammoth proportions.   A woman who was very active and well known  died very suddenly.   Again, a lesson in how precious this thing called life is.   Each day is a gift and we, esp here in North American, rarely realize that until something like this happens.  I know in some ways I have been blessed with the knowledge of this fact, but even so I often live like tomorrow is a guarantee and don't say the things that should be said or do the things that should be done.   Anyways, her funeral was absolutely a tribute to her and to her works.   It was a real reminder of what is important in life, love and good deeds...that is all that we are asked of....nothing more, nothing less, nothing else.

It was also very hard because her beautiful daughter was so close to her mother.  It reminded me very much of the relationship that I have been very blessed to have with my own.   They talked every day and were very much a part of each others lives.   Meaning, that this is going to be very difficult for her daughter....but in the long term it is this closeness that will give her the most comfort.   What made it so hard for me is to see how upset and sad she was.....knowing that too would be mine.   As she walked up the aisle in the church she and her Dad just held onto each other, holding each other up.  My heart broke but then all I could think of was 'who will hold my daughter up'.    It hit me like a brick and I just started to sob.   Not something that I am accustomed to doing even at a funeral.  I mean it is what I do for a living.....hatch, match and dispatch!....but it was good for me.  I cried,held a friend's hand and after answered my own question....all those who I know love her.

Life can throw many punches at you, but each one is an opportunity to deal with and learn something new.  Today I know that even though it will be difficult when my time comes that she will survive if a little more sad and lonely.   Those around will gather and love her....just as we all did yesterday for this young woman and her Dad.    Love is an amazing thing, it doesn't cost us anything, it is so simple to give, and in most cases it is accepted without any argument......so live each day and love and all will be well in our world........

P.S. Off to the Toronto International Film Festival today.....maybe I will see Brad Pitt:}   even people with cancer still get excited about the silly things in life....YEA

Death is close....always!

Haven't really felt like writing much.   The juices don't seem to be flowing...maybe this is what is called a writer's block.   Decided I needed to though because the past week has been nothing if not interesting.  Then again, I find that my life is usually interesting...at least to me. 

Had a real theme of dying this week.   With Jack Layton's death which put me in a bit of a tailspin.  It reminded me of how swiftly this disease can take you from the top or peak of your life and within weeks put you in the ground.   I don't like being reminded of these things but sometimes it is a good thing.   Then I did a funeral on Saturday for a former student who's father died very suddenly, and again was reminded how precious life is, and how unpredictable!   There was a photo at the service of him taken one day before he died with his granddaughter.  It was so beautiful and he didn't look like he was dying...and yet she turned one year old four days later without her Opa.

Both of these men were young by our standard's, yet in many ways both had lived life to the fullest in their own ways.   It made me realize that it isn't how long you live, its what you do with the  time you live.  I know that isn't very original as we all seem to say it often, esp when someone dies.  But it is profound!   

If we come to accept death as a part of life we are much more likely to live while we are still alive.   In our society (b/c most of the world knows full well that death is very close at hand) we often see death as something that is outside of life.   As if it is standing off in the wings and if we are really careful and don't let it come on stage we can somehow beat it and live forever.  We constantly believe that if we do the right things then we can avoid or at least delay death indefinitely.  Then comes a moment where someone dies and we are stunned.......

I too am very much guilty of this way of thinking.   Even with cancer, I have gotten complacent and not lived the life I know I could have.   Then it raises its ugly head again and I am taken aback by the seriousness of it.   I don't believe that we should all live as if at any moment we are going to be struck down.   It would be a very neurotic world to see everyone running around twisting their heads to see if some awful thing was about to befall them.    What I mean, is that we should look death in the eyes, see it as a reality, and then decide to live every moment as if it counts.   Not putting off all those things until it is more convenient, especially the things that are relational in nature.   Spend time with loved ones, help those in need not b/c they deserve it but b/c we as humans are obligated to help others.   See the good in others, the wonder in nature, the awe in  children, the humour in God's world.    Believe me God definitely has a sense of humour and it is all around us.   Just tell God your plans for the day!!!!   

The past week has been difficult.....I have had to look death in the face at a personal and at a more general level and both have had an effect on me.   I have had to  deal with the reality that this disease is back and that it isn't going to just go away if I ignore it.   Death is in the room in my life but it doesn't mean I have to invite it to stay or even offer it a seat.   I will look it in the eye and then turn and leave the room to live another day......that's all I have and so here I go off to have a great day no matter what it brings....even if it brings death!

Mourning..........

Today I was kicked in the gut!   We lost a great Canadian today much to soon.   He struggled like many of us with cancer and unfortunately the cancer won.    Sixteen weeks ago he lived the greatest moment in his political career, leading the NDP from an almost non-existent force in Canadian politics to the Opposition Party.    As was said on twitter "he was the great Prime Minister Canada never had".......

In the midst of his own struggle he was still thinking about how we (those suffering from cancer) might lose hope in our own struggles when we saw that he lost his.    He reminded us that we are fortunate to live in a country and a  time where cancer treatments are very successful, and that we must continue to be hopeful and optimistic in our own battle.   I usually don't use these warrior type words when I speak of cancer but today that is how I feel....like we are at war with this horrible disease.    It is at times like this when I realize the incredible people we are losing to this disease......Jack Layton was a unique human being and a real politician....of the people, for the people!   A man of courage, passion and vision.....now gone from us because of a disease that seems to be winning more lately in my life than losing.    I will hang on his words of living in the moment and cherishing our loved ones and the time we have with them......

I can say it no better than he:     "love is better than anger.   Hope is better than fear.   Optimism is better than despair.  So, let us be loving, hopeful and optimistic"     Rest in peace Jack.....you have done your job and it is now our turn to carry the torch........may Canadians hold your family in their hearts and prayers.