The Most Wonderful Time of The Year

By Senior Support Coordinator Sinda Hall

Andy Williams’ Christmas song “The Most Wonderful Time of the Year” has lovely lyrics but it is also a time of high expectations. The start of the school holidays and forthcoming festive break can present a dizzying array of demands — children’s concerts, parties, shopping, baking, cleaning and entertaining…let alone time to look after yourself! Perhaps you are thinking how can I celebrate when there is so much uncertainty in my life? 

Here are a few tips that may be useful:

• Plan ahead and find out who to contact if you have a problem 
• Make sure you have enough of any prescription medicines you require 
• Pace yourself and try not to get overtired 
• Just do as much as you feel like doing 
• Rest if you need to 
• Let other people do things for you 
• Ask for small portions if you need to 
• Have snacks available 
• Enjoy yourself! 

Although the Sweet Louise offices will be closed from 24th December until 5th January, the Auckland Grief Centre is offering a limited service phone or Skype counselling during this ‘closed’ period.  Please phone (09) 418 145 and leave a message, the answer machine will be cleared twice daily. 

Who knows you may even end up enjoying the summer holidays more than you thought you would!

Other blogs about the holidays:

http://blog.uvahealth.com/2014/12/19/coping-with-cancer-during-the-holidays/

http://www.cancercare.org/publications/2-for_caregivers_coping_with_holidays_and_special_occasions

http://www.cbc.ca/news/canada/newfoundland-labrador/dr-c-coping-with-cancer-at-christmas-1.2879544

http://www.huffingtonpost.com/stephaniemadsen/christmas-with-cancer-wha_b_6371648.html

Oral health and Zometa

By Pulkit Kinra, Hillsborough Dentist

Let’s talk oral health!

Your mouth is the same as any other part of your body because it receives the same blood supply and is encased in jaw bones that are very similar in structure to the rest of your skeleton. Yet, it is unique because it is directly exposed to challenges from the external environment. So it becomes important to look at it as an organ that is affected by the same issues that affect the rest of the body, while remembering its uniqueness. In this post, I will talk about how we can avoid some major issues by following steps that are not exactly on NASA’s rocket science curriculum.

Let’s start with the effect of a medication called zoledronic acid (Zometa), which is widely used to control bone thinning caused by cancer cells that have gone into the bones. This drug binds to affected bone, and slows down damage. With me so far? Great! But like any medicine, there is a flip side. Researchers have become aware of a rare side effect of zoledronic acid called osteonecrosis of the jaw (ONJ). If we break down that fancy word, we get osteo- (bone), and -necrosis (death). In simple words, it can cause death of the jaw bone or failure to recover from injury. Why? Researchers think it’s because this drug reduces blood supply to some areas of bones.

Okay so we know that ONJ is bone death, or the failure of the injured jaw bone to recover from injury. What could injure your jaw bone? Extraction of teeth immediately comes to my mind. When I remove a tooth from the jaw, I am causing an injury to the bone that holds the tooth in place. Some other causes can be ones where injury happens on the gums, and puts the underlying bone at risk of ONJ. Common examples are poorly fitting partial plates or full dentures (just like those shoes you loved to wear, even though they bit into your skin), needing to clean deep under the gumline to treat an infection, etc.

The main symptoms of osteonecrosis of the jaw include pain or swelling in an area of the mouth, loose teeth, delayed healing of the gums especially after dental work, numbness or a feeling of heaviness in the jaw, to name a few. However, these may be signs of other much less serious conditions. If you experience one or more of these symptoms, see your dentist immediately.

The best way to deal with a problem is to not have it. So prevention is the name of the game. We want to avoid problems that could lead to extraction of teeth, gum infections, or the like. It is highly recommended that you have a comprehensive dental check before you start treatment with zoledronic acid. If you are presently on the drug, don’t miss your regular dental check and clean appointment. That cavity you have neglected can cause an abscess requiring tooth extraction. The plaque and tartar around your teeth can lead to gum disease, and may need your dentist to go deep under the gumline. All of this increases the risk of ONJ. So catching minor issues before they become major ones is our focus.

Equally (or even more) important is taking care of your own teeth. You don’t see your dentist on a daily basis, but you do see your toothbrush and floss more than once every day. A simple routine of regular brushing, flossing, and rinsing after each meal goes a long way in avoiding dental issues. Ask your dentist about the correct technique of oral hygiene.

In conclusion, zoledronic acid is a very useful drug in the prevention of bone problems, but can cause a rare side effect called ONJ. It implies death of jaw bone caused by a failure to recover from injury. The condition is preventable by way of regular dental checks and good home care. So when you follow Louise’s mantra and ask if there is something sweet, make sure you clean your teeth afterwards. Keep smiling!

The Conversation that Can Make a Difference….Advanced Care Planning

By Sinda Hall, Senior Support Coordinator

As the spring weather settles in thoughts are moving towards, Christmas and the summer holidays. Consequently talking about the end of life sounds so final and many of us find this difficult and put off any discussions about it. We all hope to live long happy and healthy lives, but this is not always the case. For some of us life will pan out quite differently.

Advance Care Planning (ACP) is for everyone. Some of us will want to plan for the worst case scenario, eg, a sudden health crisis, some of us choose to plan because we have a life-threatening illness or long-term condition and some of us choose not to plan at all.

An advance care plan involves talking with your family and medical team and writing down of wishes, preferences, values and goals relevant to all your current and future medical care. Although it is a voluntary, and importantly an ongoing process, the research published in the BMJ in 2010 by Karen M Detering, ( http://www.bmj.com/content/340/bmj.c1345) concluded “Advance care planning improves end of life care and patient and family satisfaction and reduces stress, anxiety, and depression in surviving relatives.”

A survey in 2012 by the California HealthCare Foundation (2012) found that 60% of people say that making sure their family is not burdened by tough decisions is “extremely important”, however 56% have not communicated their end-of-life wishes.

We all have ‘secret/special goals’, so why not share them with the people who matter most to you. After all many of us spend a great deal of time our holidays…… To find out more and to begin thinking and talking about your future ask your Sweet Louise Support Coordinator for the ‘Our Voice – To Tatou reo” booklet, or ask your medical team for more information or go to http://www.advancecareplanning.org.nz

Love from Sally and Jana

By Support Coordinators Sally and Jana

Over the last five years, I have watched in awe of the amazing lives of Sweet Louise Members from my privileged position as Sweet Louise Support Coordinator. From my perspective you are all amazing! It is incredible just what you fit into your lives and how you keep on living as fully and as positively as possible, despite so many physical drawbacks and uncertainties about the future. Life keeps pulling you forwards with a momentum that seems to have no time for the small trifles, as your spirits flourish with all you can do that is good for those around you as well as your own selves. It seems that as the knowledge that life is fragile and uncertain grows, all that is unimportant in peoples lives slips away exposing the true wonder of each person.

Many of you set goals for yourselves. These may be just small goals like ringing a friend, or they might be big goals like following a lifelong dream. One Member I know recently bought a new horse. Another travelled to Japan. We all set goals and some of the hardest ones are the ones that might sound quite simple to others. Recently I set myself a goal to have some time out to breathe and spend time reassessing life and where to next. Sadly with this decision I have chosen to leave Sweet Louise to do this. I will miss you all but you will not be forgotten and I look forwards to meeting you all from time to time and hearing more of your amazing stories of living life to the fullest.

Love from Sally

Over the past two and a half years I have been touched to witness the generosity of so many fabulous people. Who have given, in so many ways, their time, their energy and their skills. As Sally says, it is truly a privilege to be a Sweet Louise Support Coordinator in an organisation surrounded by amazing inspiring Members and caring, generous, kind supporters and volunteers.

A bit like an Oscar Recipient trying to thank and acknowledge everyone, I fear I will make a mistake and miss someone out.  So deeds, not names will be mentioned.  There are the makers of intricate quilts, knockers, cakes and heart pillows and the gifters of fabulous flowers, magazines and tickets for events and shows. All who ensure we always have beautiful, fun and thrilling things for Members to enjoy.  Be it speeding round the race track in a V8 or dressing up for seats at Fashion Week. There are the helpers, posting out newsletters, driving, helping or speaking at Members meetings or playing a part, making a Members wedding day special.  And people, I haven’t got a name for, with their amazing fundraising feats running, swimming and of course walking 100 km in a day. 

I thank you all and I too hope I will cross ways with you again

Love from Jana

Why MBC Day is Important

By Emma Pirie, Sweet Louise Fundraising and Communications Coordinator

Before I started working for Sweet Louise, I had no idea what metastatic breast cancer was. This was despite the fact that my best friend’s mum was a Member. Even though I knew her for 8 years, I never really knew what cancer she had and just how seriously it affected her and the family. It wasn’t until after she passed away that I realised what she had to deal with. And that’s the reality for so many people. People just don’t know what metastatic breast cancer is and what those dealing with it have to experience.

Today is Metastatic Breast Cancer Day. A chance to raise awareness and share your story with others. It’s days like today where we can educate people who don’t know what Metastatic Breast Cancer is.  

One comment a Sweet Louise Member made really stuck with me and has helped me understand just what cancer patients go through.

“I have struggled to find an adequate metaphor to even begin to touch on the horror of that diagnosis. The closest I can get is to liken it to being hit by a wrecking ball, or to have a tiger with its paws on your shoulders, and great hot breath, roaring in your face. The tiger can be sedated, but its hot breath is always there.”

Today is a day for raising awareness about what Members like her have to face. So here’s some things that people don’t know about Metastatic Breast Cancer. Leave your thoughts in the comments.

Things people don’t know about Metastatic Breast Cancer

1. Metastatic breast cancer is also known as advanced or secondary breast cancer.
2. No one dies from breast cancer that remains in the breast. 
3. Metastatic breast cancer is the spread of cancer to different parts of the body. Typically the bones, liver, lungs and brain.
4. Treatment for metastatic breast cancer is lifelong and focuses on quality of life and control of the disease.
5. Early detection of breast cancer doesn’t guarantee a cure. Metastatic breast cancer can occur years after a person’s original diagnosis.
6. Young people, as well as men, can be diagnosed with metastatic breast cancer, sometimes without knowledge of the breast cancer.
7. There are different types of metastatic breast cancer.
8. Although most people will ultimately die of their disease, some will live for many years.
9. There are no definitive prognostic statistics for metastatic breast cancer. Every patient and their disease is unique.

Visit www.sweetlouise.co.nz for more information and to find out about what services Sweet Louise offers. Or if you’d like to share your Metastatic Breast Cancer story, let us know here.

Some information taken from http://mbcn.org/

My Mum Has Cancer

By Alana Shelton, 17

Maree, Alana’s mum

Cancer was something that I had heard about. But, I think like most people, I thought it would never affect me. I didn’t know anyone who had cancer and I hadn’t seen anyone with cancer. It was a totally foreign concept.

My mother was diagnosed with breast cancer in 2010. I was 12. I thought cancer meant death. I felt scared, upset and angry. Things like this weren’t meant to happen to people like us. I thought the usual questions.

Why me? Why us? What did we do to deserve this?

There were a lot of tears, that day and the next. It took a while for me to come to terms with the facts. It was real and it was happening. My family talked about it a lot, which helped us come to terms with each other’s feelings and thoughts. I know I had a lot of questions that I wanted answering, mostly surrounding what would happen next. I was scared that this meant I would get it. Luckily my mother’s cancer was not genetic.

My mother had an operation to remove the tumour and we visited her in hospital. I think I felt a sense of relief, I thought that removing the problem would cure her. But with cancer, comes treatment. Young and unaware, I had always thought that the cancer is what made you lose your hair, but I  got told they would be pumping chemicals into my mother’s body, causing her hair to fall out. The chemotherapy began affecting my mother. We watched her become exhausted, suffer from memory loss and much to our amusement, she lost her sense of taste. Macaroni and cheese with sweet chilli sauce really doesn’t make the cut with three hungry children.

She spent a lot of time in bed and we all had to step up within the household. I often felt it wasn’t fair that we had to do the housework. I was frustrated. Why did we deserve this? I remember mum came home with her hair shaved off, prepared for the hair to begin falling out. I had never seen my mother this way before, and I saw her struggle to come to terms with losing her hair. I felt guilty when I got frustrated at people staring at her in public, because I knew I used to do the same.

Cancer taught me a lot of coping mechanisms. It also taught me to be very accepting.

I felt guilty for having bad days or complaining when I knew that my mum had it worse, or other people had it worse. I know now that it is okay to feel bad for yourself. Cancer has a ripple effect. It effects the people around them too. And it isn’t always negative effects. Because of my mother’s cancer, my family has been brought closer together. We share everything, look out for each other and have our own support network. Mum has had more tumours, and has received more radiotherapy each time. She is always on tablets and the treatment is on-going. She now beeps going through airport security due to a metal hip and we often joke there isn’t much of the original her left.

There is a catch these days though. She doesn’t look sick. This makes it easier to live ‘normal lives.’ When people find out our mum has cancer they are often surprised, especially with the ease at which I can talk about it. I have realised that my mum is not going to die tomorrow. Yes, she will get cancer again but there is no point getting bogged down about the future, if she is ‘healthy’ now.

I found that Cancer needs a dictionary. Many of the treatments, tumours, tablets etc. have long names which mean nothing to a now 17 year old girl. Because of this, my family has created our own lingo. Mums bone infusion is now called “bone juice” and Zoladex is known fondly as “the bullet.” Sometimes I forget other people don’t understand this slang, and I receive some pretty weird looks talking about bone juice!

As I have come to terms with her cancer, I have found my extreme emotions have lessened because I have learnt to deal with it. She still has bad days, and we do what we can to try and take the edge off.

Click here to watch the amazing video, Alana’s mum Maree did earlier this year.

A Masculine Approach to Change and Loss

By Tim Hurley, Mercy Hospice Family Support Team Leader 

We all know that men and women are different.  Some differences are obvious, others are not.  While it’s important not to stereotype either gender, it’s also important to understand that both men and women have their unique tendencies as to how they look, act, talk, think and feel.  So, how are men both genetically inclined and generally taught to behave in ways that are regarded as masculine?

Some physical differences are already shaped at birth.  For example, the male brain is different from the female brain.  The division between the right and left hemispheres of the brain, the corpus callosum, is often smaller in men and it may contain fewer neural connectors than a women’s brain.  One theory is that this can limit how quickly and easily a man can process information between the hemispheres.  That’s really important when it comes to change and loss issues, as one side of the brain specialises in processing emotions and the other side in processing thoughts.  Having fewer neural connectors may mean that men are at a physical disadvantage when it comes to having quick access to their emotions, it can take them a little longer to do that.

Another physical difference is the hormone prolactin which is produced by the pituitary gland.  Prolactin is instrumental in the formation of emotional tears, without a good supply of prolactin, it’s difficult to cry.  Both sexes produce a similar amount of prolactin while young, but once they have reached puberty, males produce significantly less.  Therefore, many men are programmed by their bodies to cry less.

A third variable is serotonin, a chemical produced by the brain that influences our moods.  A deficit in serotonin can result in depression.  Studies have shown that men tend to produce serotonin at a faster rate than women. Consequently, men may be less susceptible to episodes of depression that sometimes accompany change and loss.

Men are also shaped by the way they are raised and boys are much more likely to be discouraged from crying or expressing many emotions when they are young. This is often reinforced by verbal messages to boys and by the models they are given to follow, usually other boys and father figures, both in real life and through the media.  However, one emotion that is given a degree of leeway is anger.

When relating to a man who is dealing with loss and change, keep an open mind and an accepting attitude.  Have an inquiring spirit and believe there are reasons he is behaving the way he is and you’ll be in a better position to understand.  Remember that his approach may be different from yours but that’s all it is, different. It deserves confirmation.

Do you have any stories about the men in their lives and their reactions? Let us know in the comments.

Telling my son I had cancer

By Sweet Louise Member Anna Southern

One morning, eight years ago, I realised that the lump I’d had for many years in my breast had changed.

That discovery led to 5 surgeries, 2 cycles of radiotherapy and drugs that changed my body. My life was altered in so many ways.

Finding out I had cancer when I had a young son was difficult. What was I supposed to tell him?

At first, I just told Jason I had a lump in my breast that the doctors wanted to remove because it wasn’t meant to be there. I told him I was going into hospital for a few days and he would be staying with his aunt who would take him to school and bring him into hospital to see me.  He was more interested in playing with my bed in hospital than anything else. Actually that hadn’t changed 8 years later when I was in hospital last month! 

I did have to explain when I had radiotherapy several months later (after my first surgery) that I was more tired because of my treatment, but he got used to me having naps.  I also made sure his school was aware of what was happening to me, in case any unusual behaviour started that I wasn’t aware of.  Fortunately he never showed any signs of distress from my health conditions.

I think it was when I had my second diagnosis and he was 2 years older, that I explained a little bit more about breast cancer. It wasn’t really until then that he connected breast cancer with dying, but he has always seen me bounce back fairly quickly from treatments.  However I never had chemo, so he didn’t have to experience that.  I would expect that to be a whole different conversation.

Fortunately there are now great resources and support for parents talking to children about cancer but I still believe parents know the best approach for their own children.

For me and my son, it had to be the truth. But it had to be simple, and only the facts of what was happening now for me, not speculation about what could happen in the future. More than anything, my son needed reassurance that I was ok and also if anything was going to change for him.

I’ve discovered kids are resilient when they know the facts, even my anxious, sensitive son. Rather than discussing any details, which they don’t understand, I would focus on the positive things we could do together.

I’ve also been careful not to talk about my health, fears and concerns when he was around and could possibly overhear. I spoke with friends and sought counselling to help deal with my own issues separately. The time I spent with him was to embrace optimism, but I did let him know I was available anytime to listen to his fears and concerns.  I also made sure he had someone he could talk to outside of the family. He has always had a counsellor he could see, without me asking any further questions.

Now my son is a teenager we are having different conversations.  These ones revolve around helping me to stay well. Sometimes I have to remind him that I need his help, mainly with simple things around the house. I may look and act well but I am still fighting a disease, and it takes time and energy.  He not only understands and responds well, but he has been a valuable teacher, making me laugh often and reminding me of what is important.

Jeremy’s Story

By Jeremy Taylor

When my wife Jaime died, I told our young girls that Mummy was an angel.

Jaime’s family – Abbey, Jeremy, Sophie and Ashley

In 2011, Jaime found a lump while breastfeeding our youngest girl. A few weeks later we found out the cancer had spread to her bones.

She was only 30. We didn’t expect it. Cancer was something that happened to other people, older people. We were growing our family and planning our future together.

Jaime passed away on January 31, 2013. The last thing she said to me was “I love you”.

Before her diagnosis, Jaime and I were very independent people. We didn’t like accepting help. But we soon learned to appreciate help in the midst of the cancer battle.

You don’t realise how much stress you’re under. Little things can make or break your day.

Sweet Louise offered essential support in our darkest days.

After her breast surgery, vouchers from Sweet Louise meant Jaime could buy special mastectomy bras because the ordinary ones didn’t fit anymore. Jaime told me:

“I started to feel like my old self. It was such a confidence boost because I’d been feeling quite low. The bras did a great job raising my self-esteem.”

At meetings Members spend time with other women going through the same journey.Attending Sweet Louise meetings was another support for Jaime.

Jaime’s daughters Sophie and Ashley

Jaime talked about the meetings a lot. There she could talk with people who understood what she was going through. She didn’t want to upset me. So it helped her to have a support network to confide her deepest fears in.

For Jaime, Sweet Louise was a group of people she could lean on. She loved her contact with the amazing Sweet Louise Nurses and the connections she made with other Members. And the financial support took a weight off her shoulders.

Jaime lived for her family. She was such a loving and affectionate person, a mum-in-a-million.

There isn’t a single day that goes by where I don’t think about her. Or our dreams unfulfilled.

I get so much joy out of the kids and seeing them grow. I wish Jaime could’ve shared it too.

Jaime’s story is a constant reminder to take nothing for granted. To live every day. To be positive, give love, and be loved.

– Jeremy

Life Before and After Surgery

By Sweet Louise Member Desiree Arthur

Desiree and her husband Andrew

Life as we all know it can sometimes throw us a curve ball. When I was diagnosed with breast cancer for the first time (early stage) and the second time (advanced stage), I was bowled over. Shocked and devastated the key questions I had in my mind were:

What is my prognosis? How can I deal with this? What are my options?

“Treatment” was just a foreign word to me, what does it even mean? I needed time to process it all and I soon became absorbed on fighting this beast and one of my best weapons was to take all the treatments I could get. At the time I was not particularly concerned about the side effects and impacts the treatment would bring into my life. I was oblivious on what would follow and the changes to my body and soul.

My first course of treatment was to have major surgery – a double mastectomy. I’ve had my fair share of nightmares but I have never dreamed of this happening to me ever. Really? Will I really lose both my breasts? What will my boyfriend think about this? What will people say? What does this mean to me? I didn’t know what to think, I didn’t know what to feel and then the tears started falling. I went through an emotional roller coaster ride. Crying became my favourite outlet. Losing the very part of my body that symbolised my being and my fundamental essence was not an easy ordeal to go through!

The only form of operation I’ve experienced in my 31 years of existence was having a tooth extraction! I was so scared and terrified of going under the knife! But I hardened up and went ahead with the surgery, it’s not that I had a better option anyway! Looking at my flat chest and two big scars, I went through another emotional drama. I was feeling sorry for myself, sad and angry, my self-esteem was at ultimate low and I was losing my confidence fast. If it was not for my supportive boyfriend (who’s now my husband) who reassured me, “let them go, they’re just boobs no big deal, we’ll get you bigger implants”, I probably would have stayed in the rut for much longer. So I made up my mind – life had to go on without my breasts. Later on, I went through under the knife again to get my implants. Like everything else, it’s easier the second time around.

After the double mastectomy and reconstruction I thought that was over, I’d go home and go on with my life. But oh no I was completely wrong!

As they took 20 lymph nodes from my right armpit, I had to have a Hemovac drain put in place under my skin to remove any blood or other fluids that might build up from the surgery area. It was a bit painful and it felt awkward carrying the Hemovac bag around. I also had to empty the bag on a regular basis – another weird experience! So I was relieved to part goodbye to it a week or so later.

As time went on I got used to see the scars on my fake breast, the skin that always stayed cold and the loss of sensation. But the best thing that came out of it- I said goodbye to my bras and I haven’t worn a pair for over 12 years. To all the ladies, you know that end of the day bra feeling? You know what’s better than that? Never having to wear a bra in the first place.