CLICK HERE TO GO TO THE BT SURVIVOR GROUP. ("A site dedicated to discussing survivorship, treatment options available now and those options on the horizon that show promise.")
|Home||Brain Tumour Alliance Australia (BTAA)
||The MAIN links webpage||A talk that Marg first gave in Canberra in 1988 (Her attitude to life).||Things to remember in this fight. (Inspirational thoughts from another brain tumour patient).||Transcript of the discussion with the neurosurgeon on 22 August 2000||Marg's talk to her fellow parishoners. (2-3 September 2000).||Virtual Trials - links to many brain tumour websites.|
Brain Tumour Alliance.
||Radiation planning session at Canberra Hospital.||Impressions of seven weeks of visits for radiation therapy.||Ben Williams' inspirational battle.||Listing of topics mentioned in the web-diary. (e.g. side-effects, hospitalisation, etc).||Brain Tumour Publications & Resources.||Marg's medical diary. (Medications, blood counts, etc).||The paediatric brain tumour discussion list.|
|The Yarra Bay Eucharistic Prayer Community, Sydney, Australia.||Links to a table of previous date periods covered in the web-diary.||End stages - Crossing the Creek book.||End stages - Dianne Phillips' website.||Nine prayers||How to join the Australian OzBT discussion group. (There are also NZ, US, Canadian, UK and Singapore groups).||The story of Robert (Scott) McLean - 8 year gbm survivor.||Marg's last days.|
Read a review of this book here.
|PREPARE NOW FOR THE 2011 INTERNATIONAL BRAIN TUMOUR AWARENESS WEEK WHICH WILL BE HELD DURING 30 OCTOBER - 5 NOVEMBER, 2011 AND THE WALK AROUND THE WORLD FOR BRAIN TUMOURS, WHICH WILL COMMENCE ON 1 JANUARY 2011 AND CONCLUDE ON 5 NOVEMBER 2011.|
|Note: I am no longer updating this website but am now fully involved with Brain Tumour Alliance Australia (www.btaa.org.au) as its Secretary and with the International Brain Tumour Alliance (www.theibta.org) as its Chair. Please visit those websites for more up to date information.|
BRAIN TUMOUR PUBLICATIONS AND RESOURCES
Also incorporating the Marg's Journey website, being the web-diary of an Australian woman diagnosed with a glioblastoma multiforme grade 4 brain tumour, and her family.
|This website contains links to useful
resources about brain tumours and incorporates a web-diary of the
twelve-month journey by my late wife Marg between June 2000 and June
You are probably here because either you or a loved one has been told that they have a brain tumour. My late wife had a malignant primary brain tumour - a gbm grade iv - but not all brain tumours are malignant; also, lower grade tumours can have a different prognosis and treatment.
No two journeys with a brain tumour are exactly the same but they often have common features. Please feel free to dip into the website and to explore the day to day diary entries and the links which are on the next webpage. If you are searching for something in particular there is a link to a "topics index" on the links webpage. That index incorporates the diary entry date for each of 700 topics.
My prayers and best wishes are extended to all those who might be afflicted with a brain tumour, and to their carers and families. "Positive and realistic" was my wife's motto - positive that she would be open to any treatments that might help her, and realistic enough to understand that many brain tumours travel a fairly well defined path. I honestly believe that this attitude helped to make the journey easier for both her and our family. Here is a link to a set of inspirational thoughts on the website of another gbm iv patient. They provide a focus on how to cope with this journey, and this is a very relevant quote from Rabbi Kushner (author of "When Bad things Happen to Good People"): "God never promised life would be fair. The promise was that when you inevitably have to confront the unfairness of life, He will be with you".
This is a very appropriate and inspiring quote from David Marcus, a glioblastoma patient from Israel: "We believe we have been blessed with an opportunity to make a difference to our own lives and to those of all others we meet on this new path. We honestly do not presume to question the circumstances or conditions that accompany this time but simply say that with the help of our newly discovered understanding, we will find the strength from within ourselves to follow this new path with trust and understanding and overcome this averse trial with love and good works."
Do not hesitate to contact me if you are unable to find answers from among the diary entries and the links and I might be able to recommend further sources of information. I can strongly recommend Al Musella's website - www.virtualtrials.com - as one of the best sources of brain tumour information in the English language.
Denis Strangman email@example.com
The Strangman Family, January 2001
Back: Kieran, Peter, Josephine, Bryan, Gregory. Front: Denis & Marg.
|Click here to go to another
which includes many links to websites of interest
to brain tumour patients and their carers, including the preceding
sections of this diary. It also contains a 600-entry "topics index"
containing the diary date when particular topics (e.g. nausea,
radiation, taste, Dilantin, etc) were mentioned. By checking the diary
date you will be able to identify those entries relevant to the subject
and read the context in which they were mentioned.
Please let others know of the existence of this diary, if you think it might assist them. The URL (web address) is: http://www.ozbraintumour.org/journey.htm I will keep adding to the website from time to time but will gradually ease out of uploading day by day entries.
welcome to send prayer
to me for a person with a brain tumour. I will forward them on to the
Yarra Bay Eucharistic Prayer Commnunity. All I require is the first
name of the person.
The e-mail address to contact Denis and the family direct is firstname.lastname@example.org
LATEST ENTRIES ON THE WEBSITE: (Press "refresh" or "reload" on your web browser to see the latest information.) If the dowloading freezes or halts click "stop" to see if the webpage can be read.
The following prayer has been attributed to Pope John XXIII and was given to Marg by the Catholic Chaplain at Canberra Hospital. We reproduced it on a card which Marg distributed and kept a copy in the "emergency hospital suitcase" and in the bedroom. Marg read it when apprehension and anxiety were enveloping her. I hope that you also will find it comforting.
A PRAYER FOR TODAY
Every day I need you Lord, but this day specially. I need some extra strength to face whatever is to be ... This day more than any day I need to feel You near - to fortify my courage and to overcome my fear.
By myself I cannot meet the challenge of the hour. There are times when human creatures need a higher Power - to help them bear what must be borne. And so, dear Lord, I pray - hold on to my trembling hand and be with me today.
Marg Strangman 20 February 1946 - 19 June 2001 R.I.P.
My darling wife, Marg, passed away at 11.05 p.m. Tuesday 19 June 2001.
Margaret Ann Strangman: Wife of Denis, mother of Josephine (25), Kieran (23), Peter (21), Bryan (19) and Gregory (15). Born in Scotland 20 February 1946, daughter of James (dec) and Catherine Mulholland (nee Roberts), married in 1974.
gbm iv brain tumour - Seizures 27 Jun 00, Dilantin toxicity Jul 00, coma 16 Aug 00, sx 17 Aug 00, rad Sep - Nov 00, DVTs, post-Ictal 24 hr unresponsive "sleep" (a "coma") Feb 01, commenced Temozolomide (Temodar/Temodal) Mar 01; MRI 15 Mar 01 new growth, midline shift 1.5 cm; CT scan 29 May 01: midline shift decreased, "no definite evidence of recurrence of tumour". Dr says "quite remarkable". Round 4 completed 9 Jun. Tired, comfortable, "positive and realistic". 16 Jun 01 - increased fatigue; CT scan 18 Jun: massive swelling, mid-line shift, re-growth. Passed away Tuesday 19 June 2001. Survived just short of one year from time of first indication of tumour.
The IBTA had a display at a Central Nervous System Malignancies conference in Warsaw, Poland, during March which was manned by myself and the IBTA secretary Kathy Oliver (UK). We also made contact with local Poles in an effort to prompt the establishment of a local brain tumour support structure, of which there is currently none.
My visit coincided with Palm Sunday and the anniversary of the death of Pope John Paul II, who the Poles hold in tremendous esteem, as witness this photo on the front of a Church in Warsaw. I stayed at the Hotel Grand which was undergoing renovations. It had been built in 1967 and was probably home to many visiting Soviet bureaucracts over the years before the fall of Communism.
|Recently I travelled on thirteen flights in three and a half weeks to help staff the International Brain Tumour Alliance (IBTA) exhibition booth at the 7th EANO Congress in Vienna (see photo at right) and then to the UK to meet with UK brain tumour leaders, to NY to present an award to the winner of the IBTA logo competition (the plane window on the left is from an exhibition at Ground Zero in New York), and then to Chicago, Toronto and San Francisco to meet other leaders of the major brain tumour support organisations. 44,000 kms all told. Exhausting but worthwhile. During these meetings plans were put in place for an inaugural International Brain Tumour Awareness Week during 21-27 October 2007.|
|With 32 first-rate entries from around the world and the help of 10 international judges, including Natasha and Chris King from Melbourne, a logo for the International Brain Tumour Association has been chosen (image on left). The designer is graphic artist Rachel Aubrey from Queens in NY, who will be presented with her prize on 25 September. The IBTA will also have a display at the 7th European Congress of Neuro-Oncology in Vienna during 14-17 September at which all entries will be displayed but you can also view them on-line here.|
|1 July 2006:
Things have been very busy recently. Our son
Bryan had his graduation parade yesterday for entry into the
Police. Peter and I travelled
to Melbourne for the ceremony, which Bryan's wife Kylie also attended.
19 June was the fifth anniversary of Marg's passing, she would have
been proud to see Bryan graduate.
I received the following e-mail this week: "4 years ago my Father was diagnosed with a brain tumor. He was XX. I spent the next 6 months nursing him with my mother in his home in YYYYYY.. He died as predicted by the doctors who first diagnosed the illness. When I found out the news he had GB 4 I was at work in VVVVVV. I then spent days searching the web about this form of cancer and I came across your website, read the story and was at first very upset. But as I spent time with my father over those last few months your story helped me enormously. After returning home from his funeral I would still visit your site (I had it bookmarked) although I was not sure why, but it seemed to allow me to deal with those very emotional 6months of care and the subsequent loss of my father. At this time I believe I can now delete the bookmark. Thank you." I am glad that the website continues to be of use and relevance to others.
|For several years
I maintained a prayer
request on-line form on this website but spammers
discovered it and the system was being choked with bogus messages. I
have taken it off-line to see if this helps return it to normal use.
BTUK, the SDBTT, and the International Brain Tumour Alliance, which I chair, are co-hosting a conference in Nottingham, UK, on Monday and Tuesday next week. I was hoping to attend if the funding could be raised but that proved impossible. It is difficult to raise funds for a group which is mostly involved in advocacy work, rather than research or support. If anyone can think of possible fund-raising sources I would be very grateful. Unfortunately the IBTA does not have tax deductible status, which is an incentive for the large corporations. As well, I developed a sciatica-type pain in the leg which would have made air travel difficult. Our daughter Josephine is heading to the UK, Spain and NY today on annual leave.
Kiwi friend Dave Bowman passed away recently. Dave and his wife Penny helped raise awareness about brain tumours and new therapies in New Zealand during his seventeen-month journey and I was pleased to meet with him twice and accompany him on a deputation to see the then NZ Health Minister Hon Annette King last year. Through his campaigning Dave secured temozolomide for newly diagnosed Kiwis. Dave, Penny and friends established HeadStart and a NZ on-line discussion group for brain tumour patients and carers. Robert Allan, who I first met in the radiation oncology waiting room at Canberra Hospital, also passed away recently. My condolences to his wife and family.
|12 May 2006:
10 a.m. Our son Kieran married Kristy Tully last Saturday.
It was a great occasion and the autumn weather was just perfect. The
next day there was wind and rain. Some of Marg's friends from the
Parish believe that she must have been doing a bit of manoeuvring of
This is a link to an entry in a UK writing competition in which a 13 YO girl (Heather) writes about her father's brain tumour. The father (Russ) has given permission to upload the writing. "One breath. I glanced around slowly; knowing there was something wrong. He looked at me. One moment I’ll never forget. We stared into each other’s eyes ... Read on here.
March 2006: 11
a.m. This is a link to the website for Jerry Kline
in the US who is being treated by Dr Stark-Vance, co-author of the book
"100 Questions and Answers about brain tumors" (see above). It is one
of the most professional websites for a GBM patient that I
Peter and I attended the Celebration for the life of John Paice this week. It was a tremendous service. John and his wife Sue appeared last year before the Senate Cancer Inquiry to give evidence about brain tumours. Sue maintained a weblog here.
|14 March 2006: 10.40 p.m. This is a link to an excerpt from a book by Eugene O'Kelly, former US CEO of the accounting firm KPMG, who died from a brain tumour in September 2005. The excerpt appeared in the London Times today. This is a review of the book in the New York Times. Kelly set out to "close the circle" and unwind relationships. His wife wrote the final chapter. It is an interesting story of how one man dealt with his impending death.|
The address for this webpage is: http://www.ozbraintumour.org/journey.htm
Mail to Marg's family at: email@example.com