Late December 2008 and early 2009,  fuzz was slowly returning on my bald head.  I also noticed that I had started to develop long, fair, downy hair on my face.   I complained to my hubby that I was starting to look like a werewolf.  I felt very embarrest and wasn't sure what to do.  I tried a few things to try and remove it.  Now, one thing I do not advise and that is to place those sticky wax strips on your face.  My face was red and very sore for about a week.  I tried lightly shaving.  Not good!  Developed a stubble.  In the end, when I was showering I would give my face a gentle rub with bi-carb soda and apply moisturiser.  This helped me by removing some of the excess hair and left my face feeling soft.   I still to this day have very fine down.  But I can live with this.
 
I spoke to a nurse in January this year after my last....Intragam about facial hair post chemo and she mentioned that it was to keep the body warm.  But I still didn't have the full answer I was looking for.   I was also reminded yesterday when I was having my haircut and my hairdresser said I have this fine down still at the nape of my neck and ask if she could give it a light clip.
 
I decided to check the web site out, I found I had not been alone in this situation, so I decided to research this problem. I have found the answer on wiki.answers.com

Because we have been through chemo, due to our various cancers, many of us would have lost our hair and experienced  loss of  weight through throwing up and not being able to eat properly.  I was always feeling very cold and had to rug up from my head to my toes.

The wiki.answer states:  "Why do anorexics get Lanugo". 

After months of putting up with stomach pain and loss of weight I decided it was time to face my demons. I had both colonoscopy and gastroscopy on the 18 Dec 2007.  I was told the dreaded words YOU Have Stomach Cancer.  First thought that ran through my head.  How long have I got?  I remember feeling calm I looked over to my husband, Jeff.  He had turned pale.  I asked many question that night.  Over the next few weeks I went through all the different tests.  Bone Marrow biopsy, bloods, PET scan, CT scan, MRI.  The biopsy from the stomach showed it was a rare MALT lymphoma and could be treated by drugs and chemo.
Over Christmas I was placed on the wait and see list at the same time I was placed on antibiotics.  February after another gastroscopy they had found that the cancer loved the antibiotics and the cancer had spread in my stomach from a low grade to a high grade.  Next move Cat scan to map out my stomach I was commence on four weeks of daily radiation.  All went well even though I felt like "smoking Joe" after each session.  I felt like I was burning from the inside out.

In May I went into remission the Cancer had been successfully killed off.  Then a hiccup occurred.  In June I had found a lump on the left side of my neck.  Back to the drawing board.  More battery of tests.  Mid July, part of the lump had been removed from my neck.  Biopsy confirmed a more aggressive type of  cancer "large diffuse B cell lymphoma".  August I was commenced on Chemotherapy RCHOP14.  This treatment finished in the last week in October 2008. I was now back in remission. I continued for another month on fortnightly Mabthera IV therapy treatment.

Meanwhile at the beginning of 2008 Marilyn was informed she had cancer.  As we went through our different regimes of treatment we continually supported each other.  It was difficult at times as we both lived in different states. Mal lived in Queensland and I live in Tasmania,   Thank goodness for Skype.  We always made sure our wigs were on straight prior to skyping each other.

I am a music student studying Simply Music a course that thinks outside the square.  Studying music was the best medicine for me.  It took me to another world were I could disassociate my pain and any other discomforts.  One evening in 2008 the music to this song came to me.  June 1st 2009  the words of the first verse ran through my mind.  I dearly wanted to ring the hospital where Mal was and play it to her.  I couldn't bring myself to do it.  Mal passed away the next morning.  2010 song completed. 

 I hope by producing this song, it will help anyone suffering from a loss to move on and find peace.

 Many thanks to my family and friends who have written to me in regards to my web site.  At present because it is a new site we will  be experiencing a few bugs now and again.  Sorry about that.  Please be patient with me.
I have been told that a donation button would be a plus.  There will be a donation button coming in the near future.
Mean while I think it would be nice if you all can donate your stories, videos and images.  Also, feel free to blog your feelings and experiences of how cancer effected your life.
Rosie:)

As I sit here in front of my computer, my thoughts are....I feel like a dog who has finally caught its tail and I feel very unsure of what to do next.  I feel nervous yet very excited about this wonderful project.
On Sunday I enjoyed the pre-launch of my web site, along with my two friends Anne and Annie and our partners.  We had a lovely day strolling around Annie’s beautiful garden.  We enjoyed a delicious lunch along with a glass of bubbly.  There was lots of laughter and fun as we played music together.  My husband, Jeff shot some video clips which will come on line in the near future.  This was the first time we could relax and play Mal's song without crying.



Please join me in a little bit of blogging.  Looking forward to hearing of other inspiring stories and adventures of fellow cancer sufferers, carers, family members and friends.

Keep well and enjoy life to the fullest.

Rosie:)

1:  Allow your family and friends to care for you

I had been in denial for half of the year, my friends kept saying see someone about your pain.  I ignored their pleas.  I thought it was an ulcer and I was taking antacids hoping this would eventually help.  I even tried to keep my condition from my husband, as we were in the middle of major renovations to our home.  I finally caved in after making a promise to him that if the pain came during the night he could take me to the hospital.  A week later my diagnoses was confirmed.

 Our first thoughts were to call our children and tell them the news.  They both now lived overseas.  They both dropped all their Christmas engagements and flew home to be by my side and also to support their father.  I found it was wonderful having my family unit around me.  My son was always giving back massages to relax me and before my daughter returned back to the USA she had made and frozen a variety of soups to last me for a couple of years.

I had emailed all my friends on the mainland and kept them up to date with my condition and treatments.  By doing this it allowed them to feel more comfortable if they wanted to contact us and talk.  There were a couple that felt very uncomfortable about it all and they couldn’t bring themselves to keep in contact.

I had many kind offers from friends who wanted to come over and care for us.  It’s funny how, that even in sickness pride can take over.  Another form of denial when we refused help from our friends.

If a family member or friend offers to come over to help, never let pride take over.  Accept gracefully, because we all will benefit from this kind act.
What I had learnt from this experience was that even though it was hard on me.  It was just as hard on my family and friends.

Cancer has been a very positive experience for me. It has taught me to enjoy and appreciate life on a day to day basis.  Family and friendships are so important, we need to treasure every moment when we come together to enjoy each others company.

A lovely phrase from David Baird’s book says:
“Treat your family like friends and your friends like family”

Support now - Download Rosie's song


2:  Positive Attitude

I remember, when I was told I had cancer the first thoughts that ran through my mind was, “how long have I got?”  I felt very calm.  At last! I had a name for my condition.

I was now in the hands of experienced Physicians.  My attitude was, lets deal with this problem one day at a time.

Did I get frightened?  Yes! I did, I am only human.  Pain, loss of weight due to an inability to keep food down was a concern.  New experiences of being bombarded with many treatments made me anxious.

It’s amazing how the body and mind can cope through all of this.  I was so hell-bent on fighting for my survival.

Prior to my cancer I had bought a book called “ aThousand paths to Comfort “ by David Baird.  I never dreamed I would be the one needing the comfort, because I was always the comforter.

There was one phrase in this book I found very helpful:
“Be comforted by the thought that each new challenge builds your strength and character”.

Support now - Download Rosie's song


3:  Holistic Support

Although the medical industry is amazing and I would not have survived without their support.   I decided to think outside the box and this was for me to find natural therapies to compliment my treatments.

I had decided to find a new General Practitioner that could treat me holistically and I was fortunate to find one that practiced not only as GP but also specialised in alternate medicine.  My lifestyle, diet, medications and other health concerns needed to be addressed. This holistic approach helped me through my illness and the regime of treatments.

Support now - Download Rosie's song


4: Eat Well

I use to love food that made me feel healthy, I also enjoyed naughty foods like chocolates, jelly babies and hot chips.  When I became unwell my desire to enjoy food was gone.  In its place was burning, gripping, searing pain that was wreaking havoc in my stomach and through to my now skinny withering body.  I was so weak and tired.  Not only did I have trouble eating I found I was having trouble keeping food down.  I needed nourishment for my body to survive, help fight of the cancer and support the onslaught of my treatments of radiotherapy and chemotherapy.  Thank goodness for natural therapy it assisted in saving my life.

Between the treatments and the cancer, my stomach has the appearance of being lap banded.  In fact I have not one stomach but now two pockets.  I tell my friends that one part of my stomach is for my main meal and the other is for desserts.

Another thing that occurred was loss of taste and smell and to this day I am still slowly recovering from this problem.  I am eating well now.  No more pain.   I now only get discomfort if I over eat and stretch my two stomachs. 
My dietary intake has changed.  My body can not tolerate red meat.  I find I have discomfort eating to much protein in the evening.  I had to relearn to eat smaller amounts.  It’s amazing how sometimes your eyes can be bigger than your belly.  Relearning to adjust meal sizes is not easy.

I have bought myself two handy books the first book is called:
“Staying Alive Cookbook for Cancer Free Living”  by Sally Errey... stories by Trevor Simpson.

This book talks about “survivors...recipes...results.”
I found the chapter on “Healing, mind, body and spirit” fitted into my way of holistic thinking.

The second book is about:
“The Doctors Book of FOOD REMEDIES” by Selene Yeager

I have found this book extremely useful in understanding the goodness of the foods we eat.  One sentence I found interesting was:
 “When it comes to cancer prevention, food is a powerful medicine”.

Support now - Download Rosie's song


5:  How to relax

Relaxing for me came in many forms.  Due to my illness I was always extremely tired from the bombardment of treatments and drugs.  All I wanted to do was sleep and hope this nightmare would disappear.

To overcome this negative feeling, I turned it around to a positive attitude through my music studies which I have been learning since 2005.  This music program is called Simply Music.  Its approach is completely different from the traditional teachings.  It makes you think outside the square.  Whenever I was in pain, I found by playing the piano it took me to another level where I could will away some of the pain.  I found it relaxed and gave me so much pleasure.

I love the beach but because I didn’t have the strength to walk far I enjoyed just sitting in my lounge room with a cup of tea gazing out to sea.  I found this very therapeutic and relaxing.  Another wonderful way of relaxing was sitting in a boat with friends as we headed off to find great fishing spots.  I enjoyed the feel as we flew across the water.  I loved watching the sea birds flying over head waiting for tip bits from us. I even enjoyed catching a few fish however, I needed my hubby to help me reel them in as I didn’t have the strength.

Two of  girlfriends would take me on picnics around the various gardens in Hobart.  This was another delight as I love gardening.  Even at home when I felt a little stronger, I would love to walk around my garden trying to smell the flowers and pulling a weed out here and there.

My very favourite form of relaxing was playing with my gorgeous cat.  It’s amazing how animals are so receptive.  I loved her snuggling up against me purring quietly and gentle kneading me as I slowly drifted of to sleep.
We all need to find our own coping skills in relaxing.  I found that by snuggling down with my cat or having a good read, enjoying arts and crafts with my two friends.  Fishing, gazing out to sea, walking around my garden and playing my piano.  Even cooking a cake for my hubby and enjoying his cuddles.  This was my way of relaxing while going through the toughest time of my life. 

Support now - Download Rosie's song


6:  Laughter

I remember when I was so unwell and very weak, the pain was so unbearable.  I could actually feel my life ebb slowly flowing away from me and yet, I could still find humour in my darkest painful times.  I remember looking upward and saying.  “You can beam me up now Scottie”  A few days later feeling a little better.  I decided I was not ready to go.  So I looked upwards again and said “You can now delete that message Scottie”:)

My family and friends were never morbid in fact, like me we were all very positive in how we dealt with my illness.  We could make light of many situations. 

For instant my wig used to always give me grief.  After having my head shaved after the first bout of chemo the remainder of my hair fell out a few days later in the shower.  Being bald is one thing trying to keep a wig on a bald head was another thing.  You are given a small net stocking to go over the shiny bald head and there is nothing for the stocking to cling to.  Then you place the wig on top of this netting.  My embarrassing but funny moments occurred when I was out shopping.  I would feel the netting riding up on my bald head then my wig would fly off my head.  Shocking me and the other shoppers.  Hence, I commenced to wear hats.

Another time I was on an outing with some friends at Port Arthur.  We were being driven around the site.  I had forgotten to bring a hat to secure my wig.  It had become windy and my wig took off down the lane way.  I had to quickly ask the driver to stop and allow me to retrieve my wig.  I am not sure who was more embarrassed.  I had a good hearty laugh that night when I relayed my story to my husband.

In the book “Staying Alive! Cookbook for Cancer free living. by Sally Errey.  In the Chapter on Healing, Mind, Body and Spirit there is a section on “laughter”  It says:
“Humour researchers have shown that laughter has regenerative powers, lowers blood pressure, increases sense of well-being, increases natural killer cells and enhances the immune response”.

I enjoy life by maintaining a positive attitude with plenty of laughter.  In David Baird’s book there is a phrase that said it all for me:

“A good laugh is like sunshine.  It can drive away the darkness.”
and....
“laughter is the best medicine.”

Please support the Australian Cancer Research Foundation by buying my song. Thank you.

Written by Rosie :)

Support now - Download Rosie's song

In September 2010, the Sorell Times in Tasmania wrote an article on Rosie and her mission to raise money for cancer research, The Article entitled: " I haven't got time to die" by Mukula Mckenzie discusses how Rosie uses music to find positivity through difficult times and how meeting Anne Tatham and Ann Thompson Smith allowed them to combine their talents to pursue the same vision; to help cancer sufferers and raise money for the ACRF.



Click image to view the full article.

The Australian Cancer Research Foundation have kindly invited Jeff and I to be guests at the opening of the Tasmanian Menzies Research Institute in Hobart, Australia. 



The Institute will be officially opened this week by the Tasmanian Minister for Health, The Hon Michelle O’Byrne MP.

The Menzies Research Institute conducts innovative, world-class medical research to improve health and well being. In particular, only Tasmania (and Iceland) have relatively isolated populations and therefore the Institute has access to Tasmania’s unique genetic identity and environmental influences responsible for the onset and progression of inherited cancers . The scientists at the Menzies Institute will work to identify genes that predispose people to cancer and hopefully bring about breakthroughs in the treatment of these cancers.

Jeff and I are looking forward to attending the opening of this Centre.  We are also very interested in hearing about the wonderful work that is being carried out by the scientific team here at the Menzies Centre.

I hope to add a few photos/video clips and info from this special occasion to share with you all.

Rosie:)

On Tuesday 28th September Jeff and I were honoured to be guests of the Australian Cancer Research Foundation.
For the opening of the Menzies Research Institute Tasmania, Australia.
The weather had turned bitterly cold that day and had started to snow above the city on Mt Wellington.

 I said to Jeff as we walked out of the carpark, I knew I should have worn my hat and rain coat as we hurried very quickly in the fine rain to the Menzies Research Centre.



Upon our arrival, Jeff and I were handed our name tags then escorted over to where a lovely
hot cuppa tea was waiting for us.
 We enjoyed mingling around and meeting different people from all walks of life.  Jeff was having fun madly taking photos and video clips of the Centre (we will up load some pics and video clips soon).  I was very impressed with the Architectural design of this building as it allowed so much natural light inside, and one could also enjoy looking out at different perspectives of the city of Hobart.






Professor Lowenthal


Eventually we were all ushered into the lecture theatre where Jeff and I thoroughly enjoyed listening to the speakers. The Director of the Institute, Prof Simon Foote gave a wonderful informative presentation about what this Centre is all about.
“The Menzies Research Institute’s ultimate goal is to cure or prevent disease and save lives”


Prof Simon Foote

After the official opening of the Centre by the Tasmanian Minister for Health, The Hon Michelle O’Bryne MP.







We all enjoyed a delicious light luncheon after which we were split up into small groups to be escorted around the secured areas of this facility.  As we went from one lab area to another, we were met by different researchers who gave us a brief explanation of their role in this wonderful institute.



The Australian Cancer Research Foundation has played a major role in providing grants to  this facility.  These grants allow the purchase of much needed equipment which can be used on many different research programs.





Two such purchases that impressed me were: ”The ACRF Tasmanian Inherited Cancer Research Centre robot.  This robot can screen thousands of blood and tissue samples for genetic markers that could be important to identifying the onset and progress of cancer.”



The other machine was the “ACRF Palm Laser Dissection Microscope.  This Microscope dissects prostate tumour samples and individual chromosomes for its blood cancer projects.”





Jeff and I ended the day feeling very privilege that the ACRF had invited us to attend the opening of this impressive institute and hope to be able to spread the word of their fantastic work and the role that the ACRF has played in making their research possible.
 Rosie:)