My cancer is advanced and incurable …

Sweet Louise Member Susan continues her Blog about life with secondary breast cancer. 
My cancer is advanced and incurable. The focus is on managing my cancer, being as comfortable as possible and living life as I want it. Ever since diagnosis I have always described it that way to family and friends.

Over the last few months I have been trying to work out the best way to discuss my funeral plans with immediate family and friends. They all live at least two hours away by car. It’s important to me that they know why I have made the choices I have. And it needs to be done face-to-face rather than via the phone, email or text.

Tonight I rang one of my three sisters. After the usual chit chat about our respective days I shared how yesterday I visited a funeral home and planned my funeral. Initially there was silence at the other end of the phone. I suggested that I visit in the coming months to share what I have arranged for my funeral. This was warmly received and tentative dates were set.

Phone calls were then made to remaining family members for the same reason.

 It must be difficult receiving a call like the ones I made tonight. It was an uncomfortable topic to initiate discussion about. I put a lot of thought into what I would say and how I would phrase information. Thankfully the phone was picked up on the first few rings each time – otherwise I would have chickened out. I kept to the facts and reassured each sibling that planning my funeral was the responsible thing to do. I also stressed that I wanted to do this planning now while I could. Finally, I reiterated that I didn’t intend to use the plans for a very long time.

 By bedtime I was I was exhausted.  Before I fell asleep I started to read through some of the material I had been given by the funeral director and found this:

 Ecclesiastes 3:1-8
For everything there is a season,
And a time for every matter under heaven:

 A time to be born, and a time to die;
A time to plant, and a time to pluck up what is planted;…..

 Susan

Not how did he die, but how did he live?

Sweet Louise Member Susan continues to write her Blog about planning for her funeral.
I had arranged to meet the funeral director at the end of my first day back at work after the Christmas break. I had hoped that I would be kept busy all day and wouldn’t be too nervous. 

I arrived at 4pm with my list of ideas. I was greeted by a really friendly guy who I will call Aaron. We sat down in a very comfortable room and I explained that I had advanced cancer and wanted to arrange my funeral while I was still fully functioning.  Aaron didn’t look phased by anything I said and was able to answer all of my questions. 

I was pleasantly surprised with how well the whole meeting went in terms of ease and level of comfort. I felt listened to and understood. 

After a tour of the venue, I decided to have the whole funeral there – both the service and refreshments afterwards. Aaron worked through a checklist which started with my name, address, next of kin, who the main people would be for him to contact once I had passed away name of GP etc. 

 I said that I wanted the funeral to be on a Saturday and thought 10am would suit most people. Discussion then moved to order of service. Taking a leaf from a friend’s funeral last year I nominated that while people are coming in and being seated that a PowerPoint be played to help them prepare for the service. 

I then decided that the person leading the ceremony would be a celebrant, that a family member would speak followed by 4-5 other speakers (yet to be arranged).  A different PowerPoint would then be played follow by the committal. 

I requested that my family, seated at the front of the room, would carry my casket out to the hearse. The rest of those gathered would follow them, pick up a flower on the way and place it on the casket and say a few words of farewell if desired.  While refreshments were being prepared people will gather to catch up with my family and with each other. 

Aaron and I discussed flowers, newspaper notices and type of casket. We also agreed on type of vehicle to take me to be cremated. This part of the journey I will do myself. 

Because I had spent last year mulling over all these details the conversation was incredibly straight forward. Aaron was writing furiously to get every detail exactly how I wanted it. 

I left with a small ‘to do’ list and the free resources I had requested via the website. I was also given a beautiful book about funerals, related poems and music. 

By 5pm I had expressed, discussed and clarified what I wanted to happen at my own funeral. By the time I arrived home I felt exhausted, emotional but most of all I had an enormous sense of achievement. 

Not how did he die, but how did he live?
Not what did he gain, but what did he give?
These are the units to measure the worth
Of a man as a man, regardless of birth.

A message from a teenager with cancer

From Sweet Louise CEO Sue Brewster
This week started with an email coming through with a poem from a teenage girl in the States with cancer.  She had six months left to live and her poem reminded me so much of the messages we hear from the women and men who have joined Sweet Louise.  You will know what I mean when you read the poem below …

SLOW DANCE
Have you ever watched kids on a merry-go-round? Or listened to the rain slapping on the ground?

Ever followed a butterly’s erratic flight?  Or gazed at the sun into the fading night?

You better slow down.  Don’t dance so fast.  Time is short.  The music won’t last.

Do you run through each day on the fly?  When you ‘How are you’, do you hear the reply?

When the day is done, do you lie in your bed with the next hundred chores runing through your head?

You’d better slow down.  Don’t dance so fast.  Time is short.  The music won’t last.

Ever told your child, we’ll do it tomorrow? And in your haste, not seen his sorrow?

Ever lost touch, let a good friendship die?  Cause you never had time to call and say, ‘Hi’

You’d better slow down.  Don’t dance so fast.  Time is short. The music won’t last.

When you run so fast to get somewhere, you miss half the fun of getting there

When you worry and hurry through your day, it is like an unopened gift … thrown away.

Life is not a race.  Do take it slower.  Hear the music before the song is over. 

This young girl wanted her poem circulated to as many people as possible to remind them to slow down, enjoy life  and seize the day.  A friend told me that she has this stored in her task list and gets it to pop up every month because it is easy to say at the time “yes, I must” and then continue rushing about a few days later.  So having said all of this, my daughters want me to go and watch X Factor with them and I said I would so watch I will.  Be nice just to cuddle up with them on the couch and enjoy the now (not the programme!!!).

A big thank-you to the young lady who penned this poem for sharing her reminder of what life is all about.

Grief can be like a wave …

From Mid Central Support Coordinator Geraldine Carswell

“Life is like a box of chocolates, you never quite know what you are going to get“. (From the film Forrest Gump)

When facing adversity, Forrest receives these words of wisdom from his mother in the great movie ‘Forrest Gump’ and I guess at times life does feel like that.

Recently a family friend died suddenly and the wave of emotions that hits you is hard to describe. Your feelings, reactions and thoughts are all jumbled and toss about in your mind. The disbelief and unfairness is hard to process.

What is grief and how do we deal with it? Grief is described as the way we slowly adjust our lives to what has happened and there is certainly no right or wrong way to experience grief as we all do it differently. There are no rules or set timetable. 

There are many ways in which we cope with our grief from exercise, music, talking and sharing time with family and friends, sharing memories or writing about our feelings.

I found this description on the Skylight website that I find I can really identify with:
Grief can be like a wave….

Grief is like falling into the surf, being pulled over by a huge wave and knocked off your feet. You are dragged along and tumbled around. You are completely disoriented and lose your sense of direction. Just when you think you can’t cope any longer, you are tossed back onto the sand. You lie on the sand catching your breath. Slowly, you start to feel the warmth of the sun on your body. As you begin to relax, along comes another wave and it tosses you back into the surf and away you go again – out of breath, disorientated and increasingly exhausted.

And as before, just when you think you can no longer cope, you get tossed back onto the sand again. This experience can repeat itself again and again, but gradually you begin to spend less time in the sea and more time on the beach breathing normally and feeling the sun on your body.

The way grief often hits us when we least expect it is like the way waves can knock us over at the beach when we are not looking. These sudden bursts are waves of pain, hitting us hard and then receding, so we can catch our breath again until the next one comes. While we can’t easily control these bursts of pain, we can get through them and we can always know that we’ll have some normal breathing times in between. Indeed, slowly, the waves come less often.

 There are many other descriptions of grief that each of us may identify with as we are all different, go to www.skylight.org.nz

A little about complementary therapies for cancer

From Sweet Louise Support Coordinator Sally Collins
Have you ever noticed that after reading something that interests you it starts popping up everywhere? This happened to me after reading “Complementary Therapies for Cancer” by Professor Shaun Holt.

Professor Holt is a leading researcher of complementary Therapies for Cancer working at Victoria University. He gives statistics that show that patients of all conditions including Cancer are using complementary therapies more and more. He urges Drs and Cancer Centers to get fully informed re complementary therapies so that they can advise accordingly.

Some of the Complementary Therapies that Holt says are proven to be beneficial are the following;

1. Acupuncture – Can lead to significant improvement in joint pain and stiffness caused by aromatase inhibitors that women with hormone sensitive breast cancer may use.
2.  Massage Therapy – Can be beneficial for pain relief, nausea, anxiety, fatigue and depression.
3. Aromatherapy – Beneficial in reducing anxiety, depression, tension, pain and nausea and also can increase the levels of white blood cells.
4. Art and Music Therapy – Can help reduce psychological trauma
5. Meditation – enhances coping mechanisms.
6. Yoga – Can enhance coping mechanisms, may decrease the severity of hot flushes, can reduce nausea, vomiting and depression and increase sleep, energy and acceptance.
7. Tai-Chi – Can improve positive balance, flexibility, stamina and muscle strength.
8. Hypnosis – Can treat chronic pain, reduce fear and anxiety, reduce the need for pain relief prior to surgery and reduce emotional distress, nausea and vomiting.

It is good to see research being done in the area of Complementary Therapies.

Drumming can be good therapy …

From Senior Support Coordinator Sinda Hall
A friend recently told me she has set up a band, in which she is the drummer.   How many of us think we would like to do something, try a new sport, a new hobby, and then ending up thinking or saying “but I can’t do this because…”

So I thought could drumming be for me….?  I looked at different local websites, and liked the idea that it was good exercise, fun, and helped to combat stress.  But I was probably also drawn to a statement: that no existing musical ability is necessary to benefit from this type of music therapy!

In addition to the musical qualities of the sounds of a drum, in many traditional cultures drums have a symbolic function and are also used in religious ceremonies, as well as a form of communication over great distances.   

In music therapy hand held drums are generally used.  One site listed these benefits:-

We learn to relax.
We learn to let go.
We learn to lead when necessary, and follow as needed.
We learn to focus intensely at times, and to just feel our way along at others.
And we learn how – without balance and harmony – the slightest hint of discord can send the whole thing spiralling out of control.

Could this be the year to try something new? After all, drums are one of the world’s oldest musical instruments!

 

Look to this day … for it is the life …

Sweet Louise Member Susan continues her Blog about planning her funeral.

Today I went online again looking for funeral homes. My main criteria for choosing a funeral home were that I wanted to be listened to, feel respected and understood. I wanted to plan the funeral now but not use it for a very long time.

 I was hoping to find a venue close to home. But this was not the case. Rather, I found a funeral home’s website near the hospital – now a very familiar part of town. The website was easy to navigate and seemed to cater for a wide variety of funeral styles accommodating all beliefs, from the ceremony being at the funeral home to being on a beach, in a park or someone’s home and everything in between. The website also had a variety of different ideas for various parts of the service.

 I sent them an email and arranged to meet. While I was waiting for a reply I came across this from the Sanskrit:

 Look to this day!
For it is life, the very life of life.

In its brief course lie all the varieties and realities of your existence:
        the bliss of growth,
        the glory of action,
        the splendour of beauty. 

For yesterday is already a dream,
and tomorrow is only a vision,
But today, well-lived
makes every yesterday a dream of happiness,
and every tomorrow a vision of hope. 

Look well, therefore, to this day!
Such is the salutation of the dawn. 

 Susan

The benefits of listening to music …

From Senior Support Coordinator Sinda Hall
Summer in Auckland can mean sunny days and picnics in the parks listening to outdoor music concerts.  Many people find listening to music relaxing, soothing, and enjoyable. I think we have all had experiences of how listening to music may trigger emotions, or memories of events and people….perhaps when we least expect it.

I read an article (published in Sept 2011: Music Interventions for Improving Psychological and Physical Outcomes in Cancer Patients. Published in the 2011 issue of the Cochrane Database of Systematic Reviews (Vol. 8). First author: Joke Bradt, Drexel University, Philadelphia) on the Benefits of Music, where the researchers from Drexel University reviewed 30 trials with a total of 1,891 participants.   ”I strongly believe that the beauty of music can bring renewed hope for patients and their loved ones and can energize them,” says lead researcher Joke Bradt, Ph.D., an associate professor of creative arts therapies at Drexel University, in Philadelphia, Pennsylvania.  Though there was inadequate evidence to find out which genre of music was the most beneficial.  As we all know we are individuals, so Rock ‘does it’ for some people, whereas others may prefer Country and Western styles!

Benefits of listening to recorded music, as well as participating in music therapy, included less anxiety and pain, and improvement in mood.  It also helped with some of the symptoms of their disease and side effects of ongoing cancer treatments.

Music is an emotional language – so why not boost your mood naturally?

‘Ticking off goals … and arranging my funeral’

Sweet Louise Member Susan lives with secondary breast cancer and writes about something many of us would choose not to think about – arranging our funerals …

New Year’s Day 2012: Right, so this is the day where I start to think of goals to be achieved in the upcoming year.

One goal that will be ticked off with an extra thick bright red vivid marker will be to arrange my funeral to the extent that I can then forget about it and get on with living a full life. Ever since diagnosis three years ago I have had in the back of my mind that this is a goal I need to achieve while I am relatively healthy and have all my ‘mental marbles’.

I tried really hard last year to tackle this task but it was too big at that time. Then, towards the end of 2011 five cancer friends died within five weeks. It got me thinking. Even though I wasn’t able to arrange my funeral I did manage to take out a life insurance plan. According to my research it’s the only plan in the country that doesn’t require my full medical history. I signed up and arranged my payment. When I pass away the funds will be paid out within 24 hours to my nominated account. A small amount is paid out if I die within the first 12 months, and the amount increases substantially the year after and again the year after that. The payout after the third year will pay for the funeral, accommodation and flights for my next of kin and other related costs. It was an agonising process to go through but I am so relieved that I did it and to some extent, as long as the payments continue to be made, I can now forget it or at least park it in the depths of my mind.

To read more of this entry from Susan, please visit the Sweet Louise website page ‘Susan’s Blog’

2012 – Year of the Dragon

From Sweet Louise CEO Sue Brewster
This is my 2nd day back my desk for 2012 and the sun is endeavouring to do what it hasn’t done for most of the North Island holidays – appear!   Someone once told me that holidays have no residual value – once you are back, you are back but I don’t think that is true … just imagine if we didn’t have them.  The weather these holidays was no deterrent and we managed to complete 5  jigsaw puzzles and spend time at the beach every day, no matter the weather.   I started the New Year with the philosophy of so many Sweet Louise women and men … make the most of every day, especially with family and friends.

And this year is a very important year in the Chinese calendar being the Year of the Dragon.  If I wasn’t past my child-bearing days, this would be a good year to have a baby.  Legend has it that in ancient times, Buddha asked all the animals to meet him on Chinese New Year. Twelve came, and Buddha named a year after each one. He announced that the people born in each animal’s year would have some of that animal’s personality. Those born in dragon years are innovative, brave, and passionate.    In our household, we have two fire horses, a dragon and a sheep – a great mixture with lots of spark and sometimes, fireworks!

Whatever year you were born in, I think being innovative, brave and passionate are all things that we can aspire to be and I intend to be all three of those in one way or another throughout 2012 and beyond!   Happy New Year everyone.