A member of the Association of Prostate Cancer Support Groups (S.A) Inc.

 

OUR GOLDEN RULE: We do not give medical advice. Your G P, your Urologist or an Allied Health Professional, are the only people legally qualified to give you medical advice.

We do, however, give you our wholehearted support.

 

APRIL 2005 NEWSLETTER

 

Meeting held in the Boardroom at

NOARLUNGA COMMUNITY HOSPITAL

On Wednesday, April 6^th 2005 at 6.30 pm.

 

Thank you to Noarlunga Community Hospital for allowing us to have our meetings there.

 

Thanks also to our Sponsors: Woodcroft Community Health Services, Port Noarlunga Christies Beach RSL Sub Branch, and all who support us.

 

Chair: John Shields.

 

Present: 20

 

Apologies: Ken, Jim and David.

 

A special welcome to new members and, or, visitors.

 

OUR LIBRARY:

 

It is good to see members making use of our library, thanks to Peter, our Librarian.

 

A new book is about what your Doctor may not tell you about Prostate Cancer.

This book looks like being a good addition to our library.

 

Our Guest Speaker: Ray Nicholson.

 

Ray gave an excellent talk about Mantle Cell Lymphoma and his experiences leading up to and after the misdiagnosis of Hepatitis C. - Ray exemplifies the power of positive thinking.

 

Ray is an amazing man and must have extraordinary stamina to survive the ordeal that he endured over such a long period of time.

 

Many thanks to Ken, for arranging this talk through Sue Watchman, Manager, Cancer Care Centre. Inc.  www.cancercare.asn.au, email ccc@senet.com.au, phone 8272 2411

 

 

RAY`S OWN STORY.

 

Diagnosis: Mantle Cell Lymphoma

From Cancer Care Centre Inc – Healthy Living

 

Living and working in Melbourne in the four years leading to my Cancer Diagnosis, I was travelling extensively overseas for my Company. I contracted a number of illnesses – cholera, shingles, rubella, chronic rhinitis, frequent diarrhoea, bad coughs and so on. Medical treatments were administered for these ills but no one could attribute the reason for me picking up so many complaints.  My general health was declining – burning and very red eyes, very dry mouth, night sweats, ears constantly ringing, coughing, shortness of breath, stuffy nose, extremely tired, both lacking energy and motivation (I had to push myself all the time), prone to excessive chills where my bones seemed to be frozen, waves of feeling unwell, headaches, pains in my back.

 

My doctor kept ordering more and more blood tests.  He was convinced that there was a serious problem but could not diagnose it.  Then one day the blood analysis showed positive for Hepatitis C.  Shock horror!  This was of great concern.  How could I have contracted this disease, which was transmitted by bodily fluids?  I was sent to a gastroenterologist who asked some very intimate questions to which he received negative responses so I was sent to another specialist who was conducting research into Hep C  and he asked the same questions to which he received similar responses.  So a rerun of the blood tests, an ultrasound and HIV/Aids tests concluded that I did not have Hep C  after all but had a blood condition that saw me referred to a Haematologist.

 

It transpired that the laboratory had mixed up blood samples so that was the bad news.

The good news was being referred to the haematology oncologist.  He immediately ordered a bone marrow biopsy from where the diagnosis was made on 19^th December 1977.

 

In sombre terms the doctor advised my wife and me:  You have a condition known as mantle cell lymphoma (one of the non hodgins lymphomas).  It is rare, about 5-7% of the lymphomas, very advanced at stage 4 and is spread through your bone marrow and lymphatic system including tumours in your spleen, arm - pits and neck.  This disease behaves more aggressively than other cancers and it is a malignancy.  There is no recorded cure.  Treatments from moderate to radical chemotherapy, to a combination of various drugs, may provide temporary relief from your present health condition but will not prolong your life, as toxic treatments were not curing anyone with this disease.

The lymphoma in the bone marrow will increase and spread to peripheral blood and bone marrow cells.  As the way forward is not clear medically, we will have a watch and see regime, monitor your progress, and consider action when your condition deteriorates further. Wow.

 

Our wake up call at age 58 could not have been any clearer.  With a Medical Certificate for indefinite sick leave from work, we left the hospital in a state of shock, anguish, anxiety, anger, confusion and high emotion.  We moved back to Adelaide near our children.

My wife had suffered bowel cancer ten years earlier requiring a major operation -  the disease had again entered our family and me the invincible one, “who never used to get sick”, struck down.  Just before leaving work I was given two books – one by a staff member on spiritual living and one from my boss`s wife, “You can Conquer Cancer”

By Ian Gawler.  This book became my guide and reference manual.  In response to the question as to what I would like as a retirement present from work, my farewell gift could not have been better – a Champion Juicer.

 

Back in Adelaide my daughter suggested that I visit the Cancer Care Centre Inc to see what they could offer.  So I came to the Centre.  I set lifestyle goals of – Diet, juicing, organic fruit and vegetables, limited meat, no processed food, exercise, goal setting (life events in the near future), attitude (I really wanted to get well again and having a strong faith) and de stressing particularly meditation (the silent healer).  At the Cancer Care Centre I attended Meditation Classes, their Living Through Cancer Course and a Support Group.  For the next two years life consisted of monthly trips to the QEH Oncology Ward, more tests and examinations with no treatment offered.  With the great support received from the Cancer Care Centre I decided to “give something back” and trained as a volunteer.

 

I was surviving against the odds but concerns were growing regarding the spread of the disease. My blood results were declining, spleen was grossly enlarged and all the rigours of ill health prevailed.  By February 2000 my condition was very poor and the doctors recommended immediate intensive chemotherapy treatment called Hyper CVAD.

 

The comment was,” your bone marrow is now chock full of tumour”.  This required me to enter hospital for each treatment as I was placed on a 24 hour drip prior to the chemo to reduce the effects of toxicity.  Complete hair loss of course occurred and Nilstat and Amosan protection fought a losing battle against mouth ulcers and infection.  The months wore on.  Eleven visits to hospital either for treatments or sometimes due to soaring temperatures, a number of operations, treatments for leg ulcers, abscess~ on my rear end resulting in two visits to the operating theatre and isolation in hospital for an e-coli infection.  Numerous platelet and blood transfusions kept my blood counts at some sort of level to cope with living.  Sickness with chemo was the norm coupled with an inability to eat caused weight loss of some 20 kilo`s.

 

Every smell churned up an overwhelming desire to be sick.  Within our church community we received a lot of prayerful support.  Meditation was maintained but sometimes even this was too hard to handle.  Tai Chi lessons were undertaken and a goal set to do Tai Chi on the Great Wall of China – was achieved.

 

I can`t precisely date the time when I turned the corner to start feeling less sick and more well.  It had been a slow process.  In September 2000 the doctor advised that while the tumours had been reduced and my spleen had reduced in size the chemo treatment regime could not continue at the present levels.  A Splenectomy was carried out to remove that area of cancer and the decision was made to kill off my bone marrow and transplant my stem cells in an endeavour to re-grow new non cancerous bone marrow.  Contracting pneumonia after my spleen was removed slowed progress.  However sufficient stem cells for two bone marrow transplants were harvested.  On the eve of the Sydney Olympics I entered hospital for six weeks to undergo BEAM chemo to kill my bone marrow and when my blood counts were off the bottom of the scale, to transplant my stem cells – I then learned what it was like to be really sick.  Whatever was left of my immune system was ruined.  Weeks of nausea, ulcers from my lips down into my gullet, no interest in the Olympics (or anything else), and time had no meaning.  After about 25 days of purgatory my blood counts started to rise indicating that the bone marrow graft had taken – progress indeed and I was slowly regaining strength.

 

In October the decision was then made to undergo a treatment of mabthera (a monoclonal antibody especially designed for this lymphoma), to kill off residual cancer cells (I had located this treatment on the internet).  In December a bone marrow biopsy revealed some minor “strands” of lymphoma but for the most part it had been eradicated.

 

The year 2001 saw progressive improvements in health and this has vindicated my mantra,

“every day, and in every way I am getting better and better” which I kept repeating all the way throughout my journey of coping with cancer.  The Cancer Care Centre resumed it`s place in my life and activities there increased, helping where I could to serve the needs of clients and the well running of the operations.

 

It is now 2 and a half years since treatment and I am in ‘full remission’.  One cannot be complacent of course, but it is great to get on with life.

 

What has been learned from this experience?  Given the early incorrect diagnosis, I believe one should always seek a second opinion on major health matters.

Set about taking control of your cure.  Learn as much as you can about your disease (if you are on the internet this is great).  Attend a Living with Cancer Course.

 

Keep asking questions of your doctor re treatment options.  Take every opportunity to improve your general health including diet, meditation and exercise. Get an interest in life

(Cancer Care Centre provided this fillip for me).  Join a Support Group.

Don`t ever give up – medical advances are continually coming along. Have faith.

Mental attitude is everything. Precious, but tenuous.  The old adage, one day at a time is true, but look up and plan what you might like to enjoy that day.

Take an interest in those around you and see where you can help.

When you think you are sick then there is someone who will be sicker.

Thanks go to God, family, the many doctors and staff at the hospital and volunteers at the Cancer Care Centre who provided support in my journey with cancer.

 

Ray Nicholson.

 

OUR NEXT MEETING

WEDNESDAY MAY 4^th 2005

Please note

The boardroom is not available for this meeting

We will meet in the room behind the shop

This will be a general discussion meeting.

An around the table talk about treatments and outcomes.

Did your treatment meet your expectations?

What could have been done better?

Did you make the right choice?

Can we improve Support?

Bring some questions.

See you on the 4^th.