Marg's Journey 30 March - 4 April 2001.

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Wednesday 4 April 2001: 7.15 p.m. Someone asked Marg on the phone today if she was "down" but Marg replied "certainly not". Marg is both positive and realistic, even if she might be fatigued and weary from time to time.

Eileen F called in today for a quick lunchtime break with Marg and they had a chat for about an hour.

The slippery floor in the en suite has been a bit of a problem. We have two of those rubber mats with suction pads similar to those of an octopus. The one in the shower is good because the water helps fasten it to the floor but the second one in the dry area has tended to slide. Today I put down 110cm strips of 24mm adhesive backed tape. On their own they provide a small amount of grip but we are waiting to see if they will stop the mat from sliding. Anyone else have a good solution for this problem? Maybe the adhesive strips need to be wider?

Marg had a call today from one of the Social Workers at the Hospital with preliminary information about a "Look Good, Feel Good" make-up and grooming seminar in a month's time. Marg missed an earlier one held while she was receiving radiation therapy and was very disappointed.

There was mention on one of the Lists today about "The Mozart Effect" in which subjects showed significantly improved spatial reasoning after listening to Mozart's sonata for two pianos (K448). A review article published this month in the Journal of the Royal Society of Medicine (downloadable in PDF format here) claimed that there are more impressive results in relation to epilepsy and referred to a decrease in epileptiform activity in a comatose patient unconscious with status epilepticus. This is similar to Marg's situation during 25-26 February this year but where we would have obtained a recording of the the sonata from, I do not know.

Tuesday 3 April 2001: 3.30 p.m. Marg has been a bit weary today, let's hope those white blood cells are being replenished. Now we know for certain - the rising feeling that Marg sometimes experiences in her chest is a a form of "simple partial seizure". The US Epilepsy Foundation has a website with explanations of the various forms of seizure " ...an odd, rising feeling in the stomach is quite common."

Got time to send someone a birthday wish? In the mauve links box above "Useful advice from others" Susan Pressler gave me permission to reproduce an e-mail she sent on how to cope when a spouse is diagnosed with a gbm. Well, her husband Cec turns 48 on Tuesday 10 April and she has asked for people to send him birthday wishes via her e-mail address SKPressler@AOL.COM Just click on the blue highlighted address and it will launch your mail-sending software. His name is Cecil Pressler, Jr. This is the text of the e-mail Sue allowed me to reproduce. 290 people have visited that page since I uploaded it.

Kieran accompanied Gregory to the Ginninderra LA's final year dinner tonight where Gregory was given the boy's "Coleman Trophy" for "the athlete who most epitomises the meaning of Little Athletics as decided by the committee". I looked up a short history of the Centre which I wrote in 1987. Peter and Pam Colman were the first Chairman and Secretary of GLAC elected at the AGM in 1977. The following year they moved to Sydney. The Centre was established in 1976 so if there are any current Committee members reading this, 2001 marks the 25th anniversary of the Centre. The first Committee meeting was held on 11 August 1976. Here is a photo of Gregory's handsome trophy. Ginninderra's colours are yellow and black

Julia Driscoll, who is on the OzBrainTumour list, has just created her own website about brain tumours. Her 32 YO sister was struck by a BT in February 2000. Here is a link to Julia's website.

Monday 2 April 2001: 3.25 p.m. Up early for blood tests and then the appointment with the Medical Oncologist. The Platelets were up - 204 but the White Blood Cells (WBC) were down - 2.4 and the Neutrophils were .96, so round 2 of the chemotherapy (Temozolomide/Temodar) has been postponed again. Marg will have another blood test this Friday and will commence round 2 if the readings are acceptable. The MO must be fairly confident because he has ordered the prescription in readiness for Friday. He anticipates the bruising effect will diminish with the higher platelet count. Marg's Dilantin serum level was up a bit at 88, so the MO recommended reducing her daily dose by 30 mg to 330 mg per day (180mg morning, 150mg evening). Tegretol was 16, Warfarin INR 2.3, Glucose 6.4, Sodium and Potassium okay. Marg had told him that when she is reading these days, the words tend to merge together, which also influenced him to lower the Dilantin dose. Marg was weighed and, at 81 kgs, she thinks she has put on about 6 kgs. The Dexamethasone, unfortunately, induces an increased appetite.

At the Oncology Unit we met Anna D, another lady from the Parish, whose husband has non-Hodgkins lymphoma. Their daughter was once in a coma for eight weeks and when she came to she told them that during those eight weeks she could hear everything that was being said around her but could not respond. Amazing.

I have uploaded to the "religious links" section above, nine prayers distributed by the Catholic Chaplain at Canberra Hospital. Fr Sheridan gave them to us when Marg was at her lowest during 25-26 February. By the way, our PP Fr D is now home from Hospital following surgery but I hear that he is like Marg - irritated that he can't do everything he previously did!

The results of Marg's MRI and Spectroscopy taken on 15 March have also been written up and appear below. The long and the short of it appears to be that there is regrowth in the original area and confirmation of the previously suspected new growth in the frontal lobe.

MRI and Spectroscopy taken on 15 March 2001. MRI BRAIN 63270. TECHNIQUE: For the MRI, routine axial, sagittal and coronal imaging both before and after intravenous contrast. For the MRS, single voxel acquisition through the right temporo-parietal region. Comparison is made with the examination of 3.1.01. FINDINGS: There has been a significant change in the MRI appearances since the previous examination with develop(ment) of a localised complex cystic mass medially and anteriorly in the right frontal lobe with overall transverse dimensions of just under 2cm. This was not apparent on the previous MRI examination but was certaintly visible on the CT examination of 25.2.01. The mass demonstrates a faint rim enhancement, but significant mass effect with midline deviation to the left as well as extensive deep white matter oedema extending posteriorly and superiorly from the mass. This new lesion is not typical of radionecrosis and suggests either recurrence or the sequel of recent infection, given the raptured (rapid?) growth rate. The complex previously noted lesion in the right temporal and parietal regions has changed little since the previous examination. There is still significant mass effect, although this has reduced slightly, is still associated with extensive white matter oedema. Spectroscopy sampling of the latter lesion demonstrates residual neural tissue and is also suggestive of early tumour recurrence with slightly raised Choline levels. CONCLUSION: Develop(ment) of new right medial frontal lesion, representing either recurrence of (or?) abscess. Findings are suggestive of early recurrence in previous(ly) described right temporal lesion.

Marg's "jelly legs" on Sunday had prevented her from seeing our son Bryan off at the airport. The MO thought this might have been caused by the 'flu vaccine on Friday. Marg is to see the MO again in a month's time. The GP will monitor other aspects. The MO had needed a referral from the GP, which we asked him to fax last week. In his background letter he wrote: "Mrs Strangman ... is battling (the cerebal tumour) as best she can". We agree!

Sunday 1 April 2001: 5.10 p.m. Our son Bryan returned to Sydney this afternoon. We are not sure if we will see him again before he goes to Timor with the Army for six months. We planned to go to the airport to see him off but Marg's energy levels were low in the afternoon so he got a taxi. The key priority is the blood test and MO appointment tomorrow morning.

	Photos clockwise: (1) Bryan escorts Marg down the hallway using Gregory's completed handrails; (2) Bryan enters the taxi for the airport; (3) Marg tells Bryan that we will come to his Awards Ceremony.

Saturday 31 March 2001: 5.20 p.m. Peter phoned from London early in the day. He received a message at work to "phone home" and he immediately thought the worst but it was to phone his London "home". Not to worry, he couldn't remember the phone number for his London home, so we obliged - a 12,000 mile 'directory assistance' call!

We had lunch in the pergola area and Gregory put up some hand rails in the hallway to help Marg negotiate her way. Following an assessment by the Occupational Health person, the ACT organisation Handy Help provided subsidised means-tested assistance to install rails in the shower and en suite and rails for one of the stairways. We have added 32 mm dowling rails elsewhere. Here are two photos:

Bruising related to low platelets: One of the most challenging things associated with a brain tumour is the experience for the patient and the carer of being catapulted into situations with which you are totally unfamiliar. Marg and I hope that other travellers will benefit from following Marg's story and will better understand incidents similar to those confronting Marg and I, should they ever experience them. Our first 'challenge' happened when Marg had three Grand Mal seizures, which I mistakenly thought were a stroke. The next was when she went into a coma. Then there was the time she experienced Aphasia and started speaking gibberish to me. More recently it has been the almost instant bruising associated with her very low platelet count. The photo is of Marg's upper left arm as it appears tonight. It is not as though you can show the bruising to your friends and say "Is that good, bad, to be expected, will it last long, is it dangerous?" Everything associated with a brain tumour is dangerous and odds are that your friends haven't previously come across this kind of bruising. The marks are caused by bleeding under the skin. The Palliative Care nurse recommended applying Hirudoid cream, which contains Heparinoid, to guard against possible ulceration when the skin later dries up.

Friday 30 March 2001: 9 p.m. Routine visit to the GP today. BP 140/86. We both got the 'flu vaccine. Marg has more bruises, you only have to hold her arm to help her negotiate a stair or whatever, and a bruise might appear later. Marg has been a little fatigued and unsteady today. The GP seems to think that the deficits are acceptable, in the interests of reducing the Dexamethasone. Marg is still on the Nystatin for her throat. The GP said you need to keep it up for a week.

We have ended up with several surplus plates and food baskets following the get-togethers held recently. Here is a photo of them. Do any look familiar? If so, please e-mail us at string@hotkey.net.au and we will return them to you. Otherwise, we have no idea of their owners.

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Calvary Hospital	July 2000	Pre-surgery	Surgery
Recovery	Talk at STA	Mask fitting	Radiation
Tablet box	Seizures	EEG	Equipment

The address for this webpage is: http://www.geocities.com/oldparl/journey28.htm

Mail to Marg at: string@hotkey.net.au

Other websites associated with the Strangman family: Snow at Fraser - http://www.geocities.com/oldparl/snow.htm , Denis - http://www.hotkey.net.au/~string/Denis.htm , Old Parliament House - http://www.geocities.com/oldparl/front.htm , Avoca - http://home.vicnet.net.au/~adhs/ADHSMain.htm , Chevalier Reunion (1999) - http://www.geocities.com/Heartland/Stream/2327/forty.html , The Strangman Studio - http://www.hotkey.net.au/~string/Dedication.html , Mocollop (Co Waterford) - http://www.hotkey.net.au/~string/mocollop.htm , ACT Racewalking Club - http://www.hotkey.net.au/~string/ACTRWC.htm , Track & Field Coaches - http://tinny.eis.net.au/~atfca/