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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.
International 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.


 Review of valuable new book for patients and caregivers. Click here.


Read a review of this book here.

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WWW www.ozbraintumour.org

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 2001.

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 string@hotkey.net.au

 

 

 

 

The Strangman Family, January 2001

Back: Kieran, Peter, Josephine, Bryan, Gregory. Front: Denis & Marg.



 
Click here to go to another webpage 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.

You are welcome to send prayer requests 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 string@hotkey.net.au 

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.

"Ma"

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.


19 December 2008: The International Brain Tumour Awareness Week and the Walk Around the Wold for Brain Tumours were a great success. 48,714 people in over 100 walks in 31 countries walked 223,088 kms (five times around the World at the Equator) and raised the equivalent of $9.6m USD for brain tumour research and support (none of the funds goes to the IBTA) during the 2008 World Walk. See: www.theibta.org  

Following the voluntary winding up of Brain  Tumour Australia (BTA) at a meeting in August, I and several of the early founders of BTA have decided to "reinvent the wheel" and have formed a new group called Brain Tumour Alliance Australia (BTAA). This has involved a fair amount of time and effort but I am pleased to say that it is off and running and the group will act as a contact point for newly diagnosed brain tumour patients and their families.

18 October 2008:
The International Brain Tumour Awareness Week will be held during 26 October - 1 November 2008. Go to www.theibta.org for further information.

28 April 2007:
5.15 p.m.
Pardon the delay in updating this website but most of my spare time is now taken up with the International Brain Tumour Alliance (IBTA) which is going very well as we try to promote greater awareness about brain tumours and the challenges they pose. Our two main projects in 2007 are the Walk Around the World for Brain Tumours and the inaugural International Brain Tumour Awareness Week, to be held during 21-27 October 2007. You can find out more information here.

There was a recent success in the UK where the regulatory body NICE agreed to recommend temozolomide and Gliadel wafers for newly diagnosed high grade glioma patients. That was the culmination of a two-year struggle, involving patients, specialists, companies, and a consortium of UK brain tumour charities, of which the IBTA was an important part. More information here.

The family are well. Peter, Kieran and Kristy are living with me, Josephine has a flat in Canberra, Bryan and Kylie are in Melbourne and Gregory is studying in Western Australia.



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.

23 October 2006: 11 p.m. I have added two items to the website. The first is a poem "The Fight" written by Jonathan Gordon, who passed away on 2 July 2006 (see entry below for 4 July). You can access the poem here. The second item is another poem called "Strength", which Kathy Oliver drew to my attention. You can access it here.

21 October 2006
: 10.30 a.m.

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.

9 September 2006
: 11.30 a.m.

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.

3 August 2006: 11.30 p.m. I have uploaded the story of Gerard Mariott's journey with a brain tumour. He has an AA III and is a five year survivor. Good on you Gerard!

4 July 2006: 11 p.m. Jonathan Gordon passed away in Aberdeen, Scotland, last weekend. Johnno maintained a website and was an inspiration to young brain tumour patients. He spent a couple of years in NZ from where his mother Judy visited Sydney for the 2004 national brain tumour workshop. I met her again at the Edinburgh conference after the family had returned to Scotland. Our condolences to Johnno's family.

I was watching "Medical Emergency" on television tonight and one of the patients was operated on for a malignant brain tumour. The Doctor did his best in conveying the bad news about the prognosis but I don't think I would have liked the cameras to be filming. When my wife's neurosurgeon conveyed the bad news he did so during a lengthy conversation where he approached the subject by careful stages. I have uploaded the transcript here. Coincidentally, a spouse e-mailed myself and others today and wrote: "
 I remember talking with the Counsellor associated with the ward where XXX  had his surgery and told her how devastating it was for us to be told 'you have 6 weeks to 3 months to live' - surrounded by a couple of young guys playing loud music and laughing with their visitors - and then for whoever it was, to walk out and pull the curtains back while we were sitting there trying to process what we had just been told. XXX  told me later that someone had come to him and told him this news while he was by himself. He certainly was not in a fit state to deal with this alone.  I am sure there was a better way of doing this  ...". The Pam McLean Centre at RNSH in Sydney have actually developed videos and role-acting scenarios to help specialists develop skills at conveying bad news but I think the problem is that the specialists are human just like us and become fearful and nervous and seek to end the discussion as soon as possible.

1 July 2006: 11 p.m. Things have been very busy recently. Our son Bryan had his graduation parade yesterday for entry into the Victoria 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 the weather!

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.

8 April 2006
:11.45 p.m.
There was a notice in today's Canberra Times of the death on 6 April of Father Peter Sheridan at age 77 years. Fr Sheridan had been the Catholic Chaplain at  Canberra Hospital and was the person who gave me a copy of the prayer reproduced above "A Prayer for Today" when Marg had slipped into a coma on 16 August 2000 and did not look as if she would recover. That prayer has subsequently travelled the world and has been reproduced by many people. I was told once that Fr Sheridan had come to Australia from the UK to look after his dying brother and had later stayed on and been given the job of Catholic Chaplain at the Canberra Hospital. He worked in tandem with a wonderful person Sr John who retired from the pastoral care office fairly recently.

31 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 have come across.

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.

3 March 2006: 11 p.m. Some good news. Last July (see entry below) I visited Wellington (NZ) as chair of the IBTA to help with the campaign to obtain access to Temozolomide for NZ brain tumour patients. PHARMAC, which is the NZ drug regulatory agency, announced yesterday that it had come to provisional agreement with Schering Plough to make the chemotherapy available to newly diagnosed glioblastoma patients from 1 May 2006. Unfortunately patients with recurrent glioblastoma will not be able to receive it as a subsidised item but there are no rationing restrictions which we had feared. Congratulations to Dave and Penny Bowman who led the NZ campaign. The battle is not yet over but it is a significant milestone and Dave has also managed to weld together a fighting group of patients, carers and their friends. One sad note - Amy Brittenden, who had been part of the deputation to the NZ Health Minister back in July, passed away before this result came through.

The battle to obtain access to Temodal for UK brain tumour patients is continuing and we have uploaded the latest information to a special website. This has kept me busy with international teleconference calls late of an evening (when it is morning in the UK).
 
Click here to go to an index of previous entries in this web-diary. >

The address for this webpage is: http://www.ozbraintumour.org/journey.htm

Mail to Marg's family at: string@hotkey.net.au