Margaret, Liz, Dennis, Cat - Margaret's birthday 10 August 2001
For the summary history I gave the ACT Hospice on 30 July, click
here.
For scans, click here - but note that key
scans are in the summary history above.
Tuesday 11 September
Margaret asked not for a formal funeral service, but that we gather by the grave at the time of her burial, to remember her happily. This will be at the Woden Cemetery at 2pm on Friday 14 September - there is a picture of the place here. Anyone may contribute, say something. There will be no presentation of special beliefs. Margaret felt no need for such, and is a shining example of the possibility of secular altruism, decency and kindness, rooted in personal goodwill, without need to belong to a movement or a belief community.
Please also go back to the HOME page and press REFRESH or RELOAD.
Sunday 9 September 2001, 10.30pm
Margaret Lilian Gray ... 10 August 1949 - 9 September 2001
Margaret died at 6.40 this evening. It has been a remarkable day, and the minutes surrounding her death, when Catherine [18] and I were present, were magical. This morning I had said to friends: "Her pulse was thready and weak yesterday afternoon, but in the night her tough little pulse returned, at 160 per minute. I think she's organised her resources and returned to our basic guiding principle - if you have to do something, then do it in style."
And she did that this evening..
I awoke this morning in the recliner beside Margaret's bed, to see her beauty. Through the day a succession of visitors came by, expected and unexpected, young and old. We enjoyed lots of reminiscences. For example, I asked a young man, from the girls' circle of friends, visitor to our house over years, if he wanted to sit by Margaret and talk to her. "Yes, of course, Margaret taught me how to cook broccoli, I'll always remember that." The beauty of simple things.
Margaret lay, unable to move or speak, propped a little on her side, wearing a purple nightgown, gift of her sister Mary, for her birthday 10 August, (backwards, too hard to lift her tumour infiltrated back to put on garments properly), with a colourful scarf on her head. Her breathing became more shallow in the afternoon, and then just a little apnoea, gaps between breaths. At 6 all the breaths were separated a little, at 6.15 Nick, our eldest, spoke to her by phone from Melbourne for the second time today (sorry, Sue, that was why your call from Fiji did not get through). At 6.30, after some broadening intervals, breath stopped. Then a minute later another little breath, then again, until, at 6.40, no more. Catherine [18] and I had been with her then, and were joined by a nurse, Chris, who happened to look in, and his presence was helpful. Liz had left for home, returning Sam the poodle there, shortly before, not being sure she wanted to be present. It was a magical moment for Cat and I.
Liz's moment has been continuing now, she having organised a team of herself, Margaret's sister Mary and old friend Petrya, to wash and dress Margaret after death - 'women's business'. I have come home with Cat, she has been joined by friends. Liz plans to go on to, or has now gone on to, a lakeside (Commonwealth Park) party organised by supportive friends for her, at which there will be firetwirling (Liz having introduced Friday night street firetwirling in the city centre some years ago) .... hello, that's changing a bit, Robert has come by to collect Cat and her two friends and Liz's guitar, to go to the party. That is, Robert, who went to Tenessee last November to marry his internet sweetheart after her cancer diagnosis, Debbie, who has since died; he has been back visiting for two weeks. This young man has given me some experience bereavement advice just now...
And so I am home alone; was invited to the party, other fogey friends may be there, but I am tired, and want the girls to find their feet independently. I do not feel too bad now, I feel good; everybody tells me this is temporary. But I have not had Margaret at home since June; I have seen her off to the possibility of death in brain surgery three times; Ihave lived hypervigilant moment to moment, waiting for the next seizure, for so long. I have managed her medical case actively so long, right down to discussion with the doctor this morning of suspension of further dexamethasone. So I have and must derive benefit from an immense relief, coming off stage, after the final performance. I feel no shame or guilt in feeling relief, though there seem some conventional cries for me to go for the weeps promptly. I have made advance payments to the weeps fund, and the griefs program - staring at the supermarket shopping just loaded into the car and despairing as to where life was going over a year ago, progressively lonely as Margaret's mental faculties were affected erratically and inconsistently by tumour and treatments. My working career saw success on the basis of ability to foresee and prepare for contigencies. I have not been blind to this contingency and to the extent that one can, I have prepared for it. I see my own doctor 8.45am tomorrow, for a start.
When I talked to the hospice doctor this morning, the question was whether it was the right time to drop the dex. This corticosteroid drug is used to moderate the mass effect of the tumour for as long as possible, by anti-inflammatory action. This can only be done for so long, as the tumour grows, and is only worth doing to maintain quality of life. Margaret had lost quality of life; it also seemed likely that the tumour was of a size such that, withdrawing the steroid, the effect would be swift. The last dose had in fact been yesterday midday. The half life of dex is 35 hours. Margaret died about 30 hours after that last dose, and the dex question was probably irrelevant to the outcome. That did not remove the necessity of, or the hardness of addressing the issue this morning. It was in the category of hard issues best faced up to; Margaret and I had discussed the issue in the past; I knew her mind on the matter.
If you draw a graph, to plot quality of life against longevity, this is the sort of graph which is ideal:
in which the collapse
of quality of life is held off to the last.
The graph of Margaret's progress has not been quite as pure and simple as that, but we came close to it. We did play backgammon last Monday and she was making powerful and optimistic meditative affirmations as recently as that, and so on. She knew from the time of the onset of raging pain two weeks ago that the jig was up; she knew that the scan later that week would find tumour throughout the spine. By miraculous timing, we got Margaret from Sydney to Canberra last Wednesday, and she proceeded to begin to leave us then. From Wednesday, the hospice, practised in avoidance of pain, was a wonderfully comfortable place to be then, compared with the neurosurgery ward, habitually anxious to minimise analgesia in patients dealing with brain trauma, which had been ideal up to the day before, seeking diagnosis and management of complications.
On Tuesday night, immediately before a bad seizure from which she never recovered, Dr Cook, the neurosurgeon, had said to Margaret: "You are a lovely person Margaret and you have been very courageous. You have done very well. I am very pleased you are going home to Canberra. You take care of yourself in Canberra. Dennis will take care of you. You deserve a carer as good as Dennis." To which Margaret, after some difficulty, replied: "I don't want to go home, I want to go to the hospice."
With the clarity of hindsight, I know that Margaret from that point, shifted her focus utterly from her ferocious pursuit of survival to the achievement of her own death. She did it beautifully. Thanks for so much Margaret. I feel like I have been pit crew chief for a Formula 1 driver, except that our racing adventure these past 17 months as been so vastly more exciting that the sterile nonsense of a motor race. What a way to go, what a woman.
Saturday 8 September 2001
Here, very briefly, is what has happened...
First though, we are back in Canberra, Margaret at the hospice, myself also staying there, and Margaret is now dying. I am happy that the palliative task - to be conservative and provide comfort - is being done. Margaret is not in pain, but we are losing her.
on Thursday 30 August, an MR spine showed tumour in every vertebrae. Now we knew, absolutely, that the remaining tasks were palliative. We had to wait for a bed in Canberra. The immediate task was pain management. This is not the forte of neurosurgery wards, which tend to avoid analgesia for recovering patients. Nevertheless, Margaret was able to get through several days with avoidance of pain. On Monday we learned that a bed was available in Canberra and we discussed with Dr Wheeler (neuro-oncologist) [1] the future dex dose (Margaret on 16mg, max effective dose 24mg, but save that for Canberra); [2] the way ahead - no, Margaret might not revisit past symptoms of right side motor loss, and loss of speech, just become sleepy) and [3] how much time (very hard to say, but the doctor amazed that Margaret had been doing so well.
Monday 3 September, we played a little game of backgammon. And the physios took Margaret for a walk of about 25 metres, with doping with morphine beforehand. Margaret was keen to do more.
Monday night, with Margaret's sister Mary in Sydney and visiting Margaret, I drove to 70 miles to see my mother in the Katoomba Hospital that night and Tuesday morning (hopefully a minor problem, but she is 87). We had a nice time and at 11am Tuesday I set out back for Sydney knowing that I had good time and a well planned energy budget to spend the afternoon with Margaret (backgammon anyone?) pack up and leave by car, guiding the ambulance to Canberra and the hospice Wednesday morning.
.... but on arrival at Margaret's bedside 12.45 Tuesday last, she was wired for ECG, had severe chest pain, and had a brief self-resolving seizure in the morning. The seizures, of course, given the softening of the vertebrae by tumour, give her a terrible jostling and pain, but the cardiologist declared the ECG aberrations to be of cardiac origin. Nevertheless, there was general confidence that we could get Margaret to Canberra, with medication. Tuesday evening she had a couple of minutes of classically grand mal seizure, then 25 minutes unconscious, eyes open and moving, while still, a state unresolved until an IV dose of midazolam.
The road trip was comfortable and quick, leaving the Sydney hospital at 7am and arriving at the hospice at 11am, with three stops, including one at a rest area which was very private and where the stretcher was taken out into the fresh air and Margaret was moved off her back up onto one side a little.
But since arrival in Canberra, Margaret has been in a state of tachycardia, elevated heart rate, from 120 to 160, perhaps in response to some neural control centre. Hard to say if the neural control centre is acting falsely, is trying to fix an unfixable problem, or, perhaps better to say, the heart is trying to fly free, to disassociate itself from the struggle. In any case the work the heart is doing is exhausting it. Margaret's vital organs are evidently strong, however, and she has kept alive. Since the Tuesday seizures she has been able to say little, and has been largely somnolent from then too, though I encourage all visitors, in her presence, to speak to Margaret or including Margaret, rather than around or over her. Nurses assure me she can hear. PLEASE GO TO THE LINKS PAGE AND READ 'CROSSING THE CREEK' FOR AN UNDERSTANDING OF THE PROCESS OF DYING, AND CONTEXT OF THE FOLLOWING. Margaret last at Tuesday evening before that last seizure. She last drank from a glass orstraw Thursday morning, now a swab with water of bicarbonate of soda, as mouth wash, is used on her lips. She last took any tablets Thursday morning. I looked at the pill bucket and said to myself, "Which is the most important to try first." She took two gabapentin (Neurontin, for seizure protection and pain) and that was it. She now has a drive providing a regular subcutaneous dose of morphine and midazolam, also gets 4mg dexamethasone four times a day (for review) and Clexane injections (anti-DVT, for review today too) twice daily. It is Margaret's basic good health and strength that is keeping her with us.
I must run, back to the hospice. Up to date new on the voice mail at 0411 89 4191, where you can also leave a message. As I have had a couple of deeply appreciated calls from overseas, note that the number, calling into Australia is [61] 411 89 4191.
I have a sense that the foregoing does not convey the ferocity of the process. But Margaret has listened to, or been visited by, if not been able to speak to, a lot of wonderful friends in the last few days. I am holding up. I have spent three nights just now in the same room as this beautiful woman this week, for the first time since 26 June, and I am sleeping better there, and feeling OK, though it all scarcely feels real. And I get some strength to continue from knowing that the task is now finite, is now nearing an end. I know my next tasks after that too: arrange funeral (in hand, also under Margaret's instructions), get rest after 16 months of slow speed spousectomy which has felt like having strips of skin removed, see daughters are well and strengthened to leave nest (now 18 and 21), discover who I am as a single person, of complexity, determined to be independent and myself, but knowing that I have never wanted to be alone...
Wednesday 29 August 2001 11.15pm
I just spent an hour writing a lengthy report for Liz to post to the web site, which the computer then lost...
so, now, again...
Briefly
Margaret's hip pain, developed Friday, turned into savage lumbo-sacral pain over the weekend, requiring morphine. Since late Tuesday, after two seizures then, the pain has also been in the upper back and right chest. Broken bones, inflammation and pulmonary embolism have been excluded, an MR of the spine is awaited to see if it is the worst of all metastates, to the spine. This is very rare but not as rare as mets to the scalp; and it may be common (who knows, there aren't enough cases to know) in the latter case.
Doctors were worried enough last night to ask whether we wanted Margaret to be placed on life support if there were further seizures and these could not be controlled. I was able to say that Margaret did not want such efforts. (Seizures can also be a terminal symptom in brain tumour.) And I was able to confirm that that was her wish in a coherent period of conversation with her this afternoon.
Today Margaret has been able to get some rest, with substantial drug support against pain, but is unable/afraid to move. I have spent 12 hours today with her, and fed her, and expect to spend more time with her from now and not to be able to get to an internet computer until we get to Canberra, whenever that may be. That is the plan, when/if there is a bed available, and when/if Margaret is well enough to travel.
Radiotherapy was completed today; there will be no chemotherapy. There can be no further radiotherapy to the other lumps on the head. These will simply be dressed, if they burst during the palliative period.
I will keep the news up to date on the voice-mail at 0411 89 4191. Calls will be diverted to the voice-mail. If you need to contact us, just leave a message. I will be notified immediately and will listen to your message as soon as possible and will call you back if I can.
There are a number of signs of deterioration and disease progression. It is very unfortunate that we move from a situation of brain tumours 'tending not to cause pain' to the prospect of brain tumour mets to the spine which cause savage pain.
Whether it is new tumour growth or not, there is a major pain source, and is associated with evidence that the tumour inside the brain is picking up speed - returning motor problems, more speech problems, memory problems, intermittent confusion and some social disconnect.
It is remarkable that Margaret has remained for so long so socially engaged with such extensive frontal lobe damage, but that is diminishing. She seemed puzzled this evening when I discussed difficulties in the way of getting back to Canberra, seeming to want the two of us just to remain in her present pleasant room, with all the support we have here.
Knowing that many partners of people with brain tumours have to cope with savage negative and hostile changes of personality I am deeply grateful that Margaret continues to want and need my support, so that is where energy now goes, and this record must now suffer.
August 24 2001 - Some good news...
some good news, some uncertainty about return, and I'm concerned about this pain Margaret has come up with in the lower back today.
Margaret commenced five treatments of electron beam radiotherapy to the major scalp tumour site on Thursday 23 August. Electrons rather than x-rays are used for treatment to a shallow depth, as also for melanoma.
The shift to this treatment, after a briefing on the prospect of major plastic surgery was a great relief.
Dr Cook's interpretation of the CT scans of 19 August is that there is less evidence of tumour regrowth intracranially than in the scalp; Dr Wheeler however, is of the view that 'the cells are cycling, at least every 48 hours, from the appearance of the scalp' and growth inside is likely to be as substantial as growth on the scalp.
Dr Wheeler proposed today that from Monday 27 August Margaret resume chemotherapy, with a combination of procarbazine and temozolomide, both at low dose - the procarbazine for days 1 to 10 of a 28 day cycle, the temozolomide (at half the five day dose or less) from days 6 to 15 of the same cycle.
Procarbazine used alone has a reputation of providing very slight improvement in survival prospects with bad effects on quality of life - see this and this and this- and being less value than temozolomide, which appeared no longer effective for Margaret.
These negative effects are reported in studies of procarbazine at higher and more sustained doses than are contemplated for Margaret. The purpose of the combination is to deal with a problem of tumour cell resistance to the temozolomide treatment, caused by an enzyme -this enzyme is apparently attacked by the procarbazine, making the temozolomide dose more effective.
We will have a chance to think about this before Monday.
Dr Wheeler also dropped Margaret's dexamethasone dose from 16mg to 12mg, being impressed with Margaret's recovery, such a vast change from when she saw her post-operatively in July, somnolent, without much speech, and without movement on the right side. Margaret today stood on her own and walked without assistance to the bathroom. However, she hurt her lower back or hip getting down off the radiotherapy bench, and still had pain after travelling by wheelchair back to bed on the other side of the hospital. This pain is being looked at by a doctor this afternoon. My concern is that the dexamethasone has effects of softening and weakening bone and eroding muscle. The pain in on the left side, which of course has been doing all or most of the work and carrying most of Margaret's weight.
The radiotherapy treatment will be finished by Wednesday next. Theoretically we could travel to Canberra Thursday, but that depends on a bed being available in Canberra...
20 August 2001
Margaret had a hard trip from Canberra to Sydney Thurday, leaving by air ambulance at 6pm, taking an infant first to Wagga Wagga, eventually reaching Sydney, sans lunch, in a small aircraft, at 9.15pm; in the emergency assessment until 9am, then in the less glamorous than it sounds 'transit lounge' before reaching the neurosurgery ward at 12.30pm, very pleasingly placed in as single bed room, with plenty of room and quiet to rest and recover.
Dr cook promptly raised the dexamethasone dose back from 6mg to 16mg per day, and that plus rest has produced considerable improvement, such that Margaret on Sunday 19 August walking with assistance one person only went to the bathroom alone, was without a catheter at last, and last night, having been reading for a couple of days, was reading aloud to me, she in the chair, while I rested on the bed. Nothing like slipping the leash and taking command.
The tumor masses on/in the scalp have continued to grow, however. After CT scan Sunday, the medical review began today, with visits from neuro-oncologist and neurosurgery team. Plastics will also be involved. We should know the plan of action in a day or so.
Margaret is well aware that the scans will make a contribution not least in helping the doctors establish how fast the intracranial tumour growth is recurring - knowing for how long the extracranial tumor has to be kept in place, while the intracranial tumour does its work
Tuesday 14 August 2001 - back to the front!
The local doctor did not arrive to see Margaret but today Dr Ray Cook, neurosurgeon, said he would like to see Margaret as soon as possible at the Royal North Shore Hospital in Sydney, to deal with the scalp regrowth, which as grown noticeably since the pictures last Friday - click here. It is now more the size and shape of a brazil nut shell, having last week been like a small brazil nut kernel.
Margaret will travel by air ambulance on Wednesday 15 August, I will drive by car. I will be available on 0411 89 4191 most of the time. Having just paid a mobile phone bill for $662 for the last couple of months, I will need to ration the news calls!
It is impossible at this stage to know what will be done, how long we will be in Sydney. The basic issue would seem to be whether there is a simple way of reducing bulk from under the skin, or whether there is a need to remove a whole area of scalp and replace with something from elsewhere - another major operation...
We do know that where Margaret is going now is a centre of excellence and a team with a determination to help Margaret as much as possible.
I have expressed to the staff of the hospice our very great appreciation for the quality and cheerfulness of care for Margaret. While Margaret today told the physio and occupational therapist that she thought her mental abilities had been declining (her insight seems still to persist then), Margaret's physical abilities have improved. Yesterday and today she stood from her chair without assistance, and walked some steps using my arms, held horizontally, just as parallel bars, for occasional support.
Friday 10 August 2001
The new flowers in Margaret's room when I arrived this morning were from Margaret Keaney, the acting registrar - camellias and daphne from her own garden. We are indeed surrounded by warm hearted people.
And it was a nice day, busy, and also with some hard medical discussion along the way. I was pleased that in the morning I was able to help Margaret get up, re-trim her hair, shower, etc. and dress for the day; similarly at night, with her growing confidence and trust in my doing support things for which she previously relied on nurses.
In the morning we had discussions with the staff specialist Dr Ann Oxner and Dr Keaney. Dr Oxner measured the growth (or rather two centres of growth) on the scalp, and we photographed it - see photos here, which are important for watching further increases in size. Dr Oxner was unable to contact Dr Cook, neurosurgeon, but spoke to Dr Wheeler, neuro-oncologist, in Sydney, who thought it could be tumour and recommended that the best first step would be for Dr Paul Craft, oncologist whom Margaret has seen here in Canberra, examine the growth. Dr Craft is now expected to visit Margaret over the weekend, in particular to see if radiotherapy would be appropriate. Margaret, during the discussion with Dr Oxner had sought to raise a point which she only got clear to me later, namely her belief that the new growth found at the operation was not malignant. I reminded her of, alas, the various points at which we had been told that it was all malignant, all glioblastoma. "Then do we give up?" she said; "Wait to see Dr Craft" I said. Dr Wheeler said thalidomide should continue.
... to turn instantly from discussion like that to visitors for lunch was hard for me, surely much more for her, but she did well, then and with visits in the evening, and the day finished happy but weary, after smoked salmon, brie, artichoke hearts, salami and olives, champagne, sour cherry and custard French patisserie, and the usual pretty good hospital fare, mainly salads and fruit, finished off in the evening with Ferrero Rocher chocolates.
Friday 10 August 2001, 6am
The photos added Wednesday were added to existing pages here (the scalp tumour on the operating table) and here (more pictures from the hospice). If you have had difficulty getting the new pictures, REFRESH or RELOAD the page opened for you to see the pictures, and go down the page.
Yesterday was another day of improvement in physical abilities, but Margaret expressed concern to the doctors about a decline in her mental clarity and speech since the operation. There may be some in the last several days, but it may be also that she is also more alertly aware of difficulties, also having difficulty with the measurement of the days. She was easily tired, socially involved with quite a number of visitors yesterday. And awake late (I was there to 9pm, before going to collect Catherine from a class at the School of Art, then brought her back to show her drawings to Margaret) and worried about having been awake to midnight with headache the night before - I made sure the nurses were aware of her concern; they can give her additional Tramadol on request, and were aware of the prospect that she might have difficulty explaining her need under stress of pain. The biggest and most wondrous surprise was the arrival at 9pm of a smiling Josephine Strangman, daughter of Margaret and Denis Strangman, met only in shared adversity in the recent past, who arrived with the most extraordinary bunch of orchids from the Strangman family.
There is some more difficulty with speech, which Margaret noted, and others did too, and which it would be nice ot think reflected a word-tumbling desire to say more, but there are also more frontal lobe headaches, which kept Margaret awake the night before. Also, yesterday I gave Margaret's hair the shortest possible trim and the lump on the scalp tumour was there, hard, long under the skin, not to be confused with any wound healing thing, looking like a small brazil nut kernel, and purpling with strong circulation like the lump dealt with in the operation on 2 July. So the tumours in the left frontal lobe (speech, cognition) and the scalp (visible, dangerous as likely to need surgical intervention with uncertainty about ability to repair) are growing, but whatever is happening with the tumour located on the top of the brain, back near the motor strip, it is allowing a return of motor function for now. To clarify these tumour growth areas, see the scans of 25 June and the operation description here.
The doctors, the physiotherapist and the occupational therapist yesterday discussed the rehab issue with us. In response to the question "Is your objective to be able to go home?" Margaret said "Yes". There are no beds available in the Rehab Ward at Canberra Hospital, hard pressed to meet the needs of patients in other wards of the hospital - the problems of the hospital dealing with winter health crises has been in the news. There is a Rehabilitation Independent Living Unit in Garran, up the street from the Hospital, but which while pleasant, demands initial abilities, such as ability to climb several stairs. Margaret is not near that ability and is well looked after by the team at the hospice, and there is no plan to move her from there at the moment, progress with rehabilitation being made where she is. It would be difficult to have Margaret at home without great improvement in her abilities. We are just keeping our heads above water at home, if not keeping ahead of the untidiness.
It is Margaret's birthday. The room is overflowing with flowers and gifts already. Margaret's response to visitors yesterday was to leap out of bed and sit in a chair, though she had gone to bed tired a little before. She clearly enjoys company. We look forward to a happy day together.
Wednesday 8 August 2001
It is Margaret's birthday Friday 10 August. Cards can be sent to Clare Holland House, Menindee Drive, Barton ACT 2600. Or emails via 'contact us' page. This is late notice, late cards welcome too!
Dr Cook has provided three photos he took, one in the operating theatre, before the operation, and two four weeks later. The picture taken in the operating theatre is not for the faint hearted, but indicates why Margaret wants me to keep her hair short (see below) so tumour recurrence under the scalp can be assessed clearly. The great lump in Dr Cook's picture was not seen at all under Margaret's hair, which just had a saucy wave. Click here to view.
I am not as down as when I wrote Monday's note. Margaret has had two very busy and active days. She no longer has title to the bath chair, but is now using a wheelchair. And today dressed in street clothes we hopped (slowly) into the car for a drive around the lake. I don't have pictures of that printed yet, but I do have yesterday's photo of Margaret in regular wheelchair at the nurses station, and a picture of Margaret with her bridesmaid of 1974, Andrea Hull, who dropped by on Saturday en route from Sydney to Melbourne. And a picture with me, with Margaret in her black satin nightie, which does seem to stir the male nurse Chris into more frequent visits... (joke, Chris). Click here for the new photos.
Yesterday Margaret said her mind felt 'foggy' but she has continued steady physical improvement and after a very hard morning, washing herself under the shower (with physio and OT in attendance) and dressing herself in street clothes and lifting herself from chair to wheelchair and with more assistance into the car and back out again after a drive, and then sitting and feeding herself, with the right hand doing some of the work and attending to discussion with Clare and John Munro, she persevered not only in attending to discussion, but also cross-examined John on his family history.
The speech therapist had suggested that I put some labels, names to faces, in Margaret's 'brag book' of family photos. This I did yesterday, and the result was valuable not least in the surprise that the names that Margaret wanted most to get clear were on wedding photo "Margaret Lilian Gray married Dennis Walter Argall 23 November 1974"; a sentence which she repeated slowly and carefully to me today. At the same time, while needing reassurance about names, she had not difficulty remembering fine and intimate details of those early days today.
I have spent some hours today making up an 80 photo brag book of history from 1969 and I have to finish the labels of those so must run!
Margaret wants me to shave (or rather do a zero length cut with the groomer) her head down again, not least so we can see and medical attention can be directed as need be to any further swelling on the scalp. She did not have the energy for this today, I will try to do it before her morning shower tomorrow.
Monday 6 August 2001
The dex dose was reduced from 8mg to 6mg today.
Having demanded on Friday that she not be given the synthetic codeine Tramadol routinely but only when she asked for it, as she was not having headaches and doubted its effectiveness against the leg pains arising from the DVT, Margaret then found herself waking with headache on Saturday night.
My impression had been that she was a little less well Saturday then Friday, slipping back a little, but she did have some extensive, very happy and intense discussion with Andrea Hull, her 1974 bridesmaid, who came to visit en route from Sydney to Melbourne Saturday and I thought perhaps my opinion was influenced by my own state of mind - weariness and perturbation setting in now, also headache, influenced by a rush of bad weather through Canberra over the weekend. On Sunday morning Margaret said to me that she thought she had gotten worse. Her overnight headache had been resolved to some extent with paracetamol, but was still present, and was still present Monday morning - alas, it's not a cold, it's not caffeine withdrawal as mine sometimes are, it's left frontal, and likely to relate to the tumour. Sunday morning the GP who does the hospice round at weekends put her on 1g paracetamol tds (three times a day) with the tramadol still PRN (patient can request). Monday, the headache still there, the staff specialist left Margaret on the paracetamol and added 50mg (instead of previous 100ml) of Tramadol tds.
Margaret still making progress with mobility, less pain in the leg from the DVT, and more strength and manipulative skills with the right arm and leg. Her speech also quite good, but challenged.
The dex reduction will be a big test. I had been confident of her continued improvement Friday, but it seems a bit less clear today.
I daily inspect and feel the scalp, in the course of gentle strokes and massage - there is a bump in the previous scalp tumour site which may be wound healing but which may also have grown somewhat in recent days. The continued improvement in movement suggests that the recent new tumour growth near the motor strip is not growing fast enough to slow that down. The pain in the left front (symptom before diagnosis April 2000), and perhaps some more hesitance with speech, may reflect increasing pressure from the original tumour site. The atmospheric low over Canberra at the weekend would have added to relative intracranial pressure. The dex reduction is the test, in that the dex, as an anti-inflammatory, has an anti-swelling effect. The recovery of the last three weeks is recovery from a problem of post-operative swelling. That operation related problem should be in decline, and the dex dose to cope with it should decline. Thus a failure to cope with dex reduction would be suggestive of swelling arising not from the perioperative problems but tumour regrowth. Pardon me if I am repeating this point. I seem to be explaining it to many and often at their request and it needs to be understood to understand the lie of the land ahead. It's the critical issue - when th tumour begins to grow to problem size, and if there is no effective tumour killing treatment, the tumour mass causes pressure, the fluid produced by the tumour causes pressure, the pressure from all that causes disturbance to healthy brain cells and they become inflamed and swollen, and so on... Relief from this, in the confined space of the brain is slight, and it is only with a rising plain of dex dosing, that it can be contained for a time, until quality of life is lost and the patient, if able to express herself (sigh), says ' no more dex' or others decide that. This not to path of many bodily cancers, it is often relatively pain free, but likely to be mentally muddled.
You can see this is the horror side of the day- rejoice at improvements yes, but waiting also for when the symptom tide comes rushing in again. The date of Friday 17 August looms, the day on which I am to report to the doctors in Sydney on how Margaret is doing, whether an MRI, to consider further temozolomide, is appropriate. It's good to be at the centre of the issues, and aware of what is happening, and can and will happen, but Margaret too is sharply aware that it is not a matter of if, it's a matter of when... Meanwhile this is not the daily discussion routine, let me assure you. The day must be constructed otherwise, and visits from friends help.
Occupational therapist and speech therapist came to visit today. With the OT I raised the question of when/whether it may be possible to get Margaret into the car, or in a wheelchair in a special taxi to drive past home, Lanyon, etc. Riding in the car depends on the DVT being dissolved, being able to sit with her legs down, being able to lift herself in and out of the car. There is a wedge in our time, in our expectations, seeming likely to chop off prospect of Margaret, having gotten into a vehicle, being able to get out at another place, for want of multiple nurses on hand to help. As there is a struggle relative to Margaret's speech capacities. It is already hard for her to say a lot of what she may want to say, and the frontal lesion also impacts on inclination to communicate. You have to figure out how to say the things you don't want to fail to say, and when. The day of putting off is past, but the days of going easy in the struggle to communicate are already here.
I have yet to unpack Margaret's suitcase, brought back from Sydney a week ago, the things she did not take into hospital with her on 27 June, things she may not see again, let alone use. Hard to face...
Friday 3 August 2001
THE LINKS WHICH PREVIOUSLY CLUTTERED THIS PAGE ARE NOW ON A SEPARATE PAGE, SEE TOP NAVIGATION BAR.
Two busy days, lots of visitors. Margaret has strong preference for visitors from about 11am, briefly in the morning, after the shower or spa bath and after the doctor/physio/occupational/speech therapy rounds; not in the afternoon or evening. But if you can only make it in the evening, give me a call. The Thalidomide capsule is taken at 8pm, after which quickly to sleep.
Continuing improvement. Much assertiveness. When I arrived, busy listening to Vikram Seth's An Equal Music on casette tape, while at the same time squeezing a squash ball with the right hand. I went through a note I had prepared recommending that Margaret's dex dose be dropped from 8mg to 4mg (the specialist does not visit to consider this till Monday, but that's soon enough) because of her improvement. Margaret read it, said she did not recall it all afterwards, but discussed aspects of it and endorsed the recommendation, then after I had added a note read my note and took the pen. When I returned from giving the note to the doctor, she had written:
in a spendidly archetypal "Snuggle Pot and Cuddle Pie" hand. (For
explanation of that reference see this.
May Gibb's gumnut baby characters wrote with a handwriting resembling the scribble
on 'scribbly gum' trees. We visited Nutcote, May Gibbs's wonderful Sydney house,
when Margaret was undertaking radiotherapy in Sydney last year.)
Her ability to stand was much greater today, remarked upon by nurses. While being transferred, with two nurses' support, from chair, to commode, to bed, she asked to spend more time trying to stand and does so much better than was the case last week in Sydney. There is still pain in the right leg. Margaret had been taking Tramadol for this pain, but has said firmly that she wants no more analgesia, after several days team (doctors, nurses, me) encouragement to take it. The medicine does not seem to help entirely anyway, and pain relief may depend on disappearance of the DVT, for which Clexane injections continue. There subcutaneous injections (on the stomach) are reportedly notorious for causing large dark bruises (low platelet effect); not so for Margaret. Some gal.
With Clare Munro to help and shame me into greater effort, we wheeled Margaret nearly to Duntroon after lunch today. It seems a good recipe; morning of business meetings, giving instruction, working lunch, post-prandial drive in the fresh air while the cleaner does the room, then back to bed for a siesta. I think she's starting to enjoy herself. Certainly, and a great sign, taking command of her routine.
Wednesday 1 August 2001
A cold and rainy day, glad we got outdoors yesterday. We toured the indoors of the hospice in the charabanc today instead. I've put up some pictures taken yesterday - checl out the picture gallery.
Tuesday 31 July
I have updated the page on medications, click here or above.
A busy day. Margaret had a spa bath (using a lift to lower her in), then a long session with the staff palliative care specialist and with a physiotherapist in the morning, also a visit from Margaret's sister Mary. In the middle of the session with the doctor, Dr Ann Oxner, who had been assessing her abilities from a rehab potential perspective (usefully Dr Oxner previously worked with Dr Dunlop at the rehab ward), the doctor was called away to the phone. Margaret said to me: "I don't know whether all this isworthwhile." We talked about this. I assured her that the future was hers to decide. It was the case that she had made great improvements over two weeks, from a somnolent and partly paralysed state, and there were more improvements daily. I went over the doctors' opinions in Sydney (see summary history - link above) and the prospect that regrowth might be rapid. I said we will know, over the next several weeks, if there is a resurgence of symptoms and an end to improvement; I said that we had probably already seen the kinds of ways regrowth would impact, on speech, on mobility, and with somnolence. Meanwhile, we had had some increasingly good days and nice times. We went over this with the doctor. (My summary history and recall of daily progress were helpful - when you move from a hospital in Australia, the information provided in the discharge report is summary and terse.)
We went over it all again with the physio, and Margaret further demonstrated a level of energy and capacity for voluntary movement and control of her limbs and fingers which was again better than the day before. I noted also that she had asked Monday for batteries for her cassette recorder because she wanted to listen to the tapes of Vikram Seth's An Equal Music which Clare Munro had given her before we went to Sydney, a complex desire, not of someone giving up. As she sat with Mary making menu decisions for tomorrow, with Mary, for the convenience of Margaret, using her left hand to tick items, Margaret said: "But you are right handed aren't you?" I pointed out to her that this remark and concern for Mary's convenience reflected [a] observation [b] memory [c] a social awareness and concern, commonly lost in frontal lobe damage, and [d] communication skills.
In summary, we came out of all the discussion with Margaret aware that time will tell, indeed the next several weeks will tell a lot, give a notion of how much time there may be.
After lunch, looking out the sliding door, I remarked on what a beautiful day it was, noted that two nurses had gone running and laughing out to provide a morphine injection for an elderly man in the sun in a wheelchair (great street drug service), in the company of daughter and grand-daughter. "I wonder when I can take you outside?" I said. "Not for a long time," she replied. "Well, I'll find out," I said. Some time later, 500 metres off up the cycle path along the Molonglo, towards Duntroon, I said, "Well, well, it only took 30 minutes!" I certainly got a wonderful heap of exercise pushing Margaret in a massive and comfortable bath chair (photos taken, will be up tomorrow) for an hour (or it seemed an hour). Occasional stops for photos, also with demands for kisses. A passionate woman still, and a great kisser. As a mark of the girl's multi-tasking skills, she demanded that I take along the toenail clippers. How environmentally sensible and stress free to clip toenails in the outdoors, allowing the offcuts to fly away without having to catch them. And of course the feet needed massaging. Pretty wonderful change, after a month in a crowded hospital to sit out under a rug in the sun, air temperature about 15c and have your recently spa-bathed feet massaged and then re-wrapped in blankets. We both had a little snooze in our chairs after that, until the sun went behind some chilly haze and we came indoors.
Later we sat and had coffee in the family room. I said "I'll tell the staff they can put you in bed and then I can leave when they've had time to do that." But oh no, that was not to the plan. The girl was not surrendering her mobile arm chair. I left her in her room in her new chair with the book tapes. And Liz found her still in the chair, watching TV, at 6pm. They may have had to surgically remove it this evening! I have an idea I'll find her in it on arrival tomorrow.
A nice swing, from a measure of reflective doubt, despair and a touch of depression, to a succession of sensuous demands for more of, of, of ... .... Well, still having difficulty with sentence ends, but Margaret has always been pretty open ended in demands for sensuous more. Suits me.
Monday 30 July 2001
Margaret left Royal North Shore Hospital at 5.30am and enjoyed her trip by air ambulance to Canberra.
The hospice is wonderful in atmosphere, comfort and outlook, with Margaret's bed (in single room) looking out the glass doors across lawns and across the lake, still today, reflecting winter trees and blue sky - photos later. I was advised that the poodle has 'bed rights' - they have not seen the size of the poodle. Margaret plus standard poodle on single bed? One would have to go!
The visiting hours are 'any time' but I would be glad if possible visitors could talk to me first, tel 6288 2958 or 0411 89 4191. I can have the phone on in the room, so easy to contact me. While Margaret was delighted by visits in Sydney, conversation and social stimulation is very tiring, so visits will need to be brief - and for a few days. Having said ring first, in Sydney I found it best to work out a visit with friends or family without telling Margaret, so she did not spend effort on preparing herself. The best times, most alert times, are at present before lunch and dinner, around 11.30am and 5.30pm. Early mornings, previously best, are now close to worst. In the last few weeks sleep at night has been disrupted, producing exhausted sleep in the morning. Thalidomide (resumed Friday) at night now means good long restorative sleep (for several weeks until this sedative effect wears off. After lunch and dinner Margaret wants sleep again.
Sunday 29 July 2001
From Dennis in Canberra.
I drove back this afternoon, Margaret flies down with a nurse in an air ambulance (on a stretcher) tomorrow, Monday, to a bed in the ACT Hospice, pending an opprtunity to go to the rehab ward. The weather is wild in Sydney, wind and storms; the weather in Canberra cool to cold, cloudless, bright, still - wonderful to come home to. Welcomed appropriately by daughters and poodle. Good to be home.
I have used available energy tonight to do a background note for the hospice team; I have also done an HTML version, accessible here or from the home page.
Much has happened. Good progress daily, marred by discovery of a deep vein thrombosis, in the leg that has not been working, on Wednesday - just as Margaret was starting to put it to use, and stand and walk (with much assistance) a little; now, with the DVT, she has to avoid heavy exercise, stay in bed or a chair, for some time. Her right hand and speech continue improvement - see details in the note liked above. Thalidomide resumed Friday; plans for consideration of an MRI and other treatment in three weeks or so... again, see the note linked above
Oh, here's a link to a Medline abstract on the high incidence of thrombosis in cancer patients. Oh, and some info on use of Clexane, one of the low molecular weight heparins. Oh, and this is why you can't use it prophylactically, in advance, to prevent the problem.
Much to do tomorrow, too, but hopefully I may start to make up for a month with little sleep...!
Tuesday 24 July, 2001- continued improvement, waiting for Canberra beds.
It has been a long week with Margaret making slow but increasingly steady progress, with fewer days of setback. By the end of the week she was producing substantial sentences, but often still not able to get the critical end part of the sentence - the predicate, for those old enough to have been taught some grammar. So having laboured over "I want..." for a week, by Thursday evening Margaret was offering "I think perhaps that this may be an opportune moment for you to..." and then the same problem, of finding the end of the sentence (she was wanting to tell me it was too late and I was too tired to drive to visit my mother for the evening; she was right, especially by the time we had exhausted each other looking for that end of the sentence). By the weekend she was able to have 20 minutes on the phone with Nick in Melbourne, with lots of comment from her end, not just "yes" and "no" and it was possible for me to share with her, and for her to enjoy the bleak humour of the week before when she sounded like that character from 'The Vicar of Dibley' saying "No, no, no, no, no,.. yes!"
>From Friday last, Margaret began moving her right knee a little, voluntarily to impress a doctor at first, but not at other times, or only involuntarily, today moving her leg quite a bit, though with effort and pain, and moving her right arm quite a bit (the first historic arm movement was in front of Margaret's sister Mary and her husband Paul, visiting Saturday), though not the right hand or fingers with fine motor skills yet. There was yesterday still a bit of agnosia [link to http://www.ninds.nih.gov/health_and_medical/disorders/agnosia.htm ] evident - she seemed astonished, not just delighted, when her right arm rose from the bed and her hand came to rest on her chin. Today this puzzlement about her right side seemed not to be present any more.
Margaret asked me, at about 10.30am this morning,"Why does today seem different?" "You are sitting up, you are enjoying being much better than yesterday" I suggested. "Yes, that's it," she replied. Quite a complex conversation, involving awarenesses, understanding, abstract thought processes, insight and expression, missing for so long. Today also, Margaret did some quite heavy work with two physiotherapists, standing up and sitting down, trying to balance and cope with the right side problem. Far from easy, quite a lot of pain (a problem compounded by her frontal lobe difficulty in recognising pain, unwillingness to take pain medication) but demanding to do it one more time when one of the physios was worried about whether enough work had been done. The determination is back, very definitely.
The improvement justifies the opinion of Dr Cook, the neurosurgeon, that the post-operative oedema was the product of an 'angry' left hemisphere, not any infection, not due to removal of the superior sagittal sinus, etc. The improvement reflects success with the treatment with dexamethasone, 24mg (8mg tid) for four days, since then 16mg (4mg qid). Though this corticosteroid can have some severe negative impacts, its value in reducing brain swelling, and the importance for the patient of dealing with brain swelling first, are very evident. You can massage a painful calf muscle, affected by dex, but there's not much point if the brain is not there, and the leg is not going to work...
By Thursday the neurosurgery intern had been able to speak to and send briefing notes on Margaret to the rehab team at Canberra Hospital. Yesterday, Monday, they replied to the effect that they would accept Margaret for rehabilitation when a bed was available, but in the meantime Margaret should go to the Ryde (Sydney) Rehabilitation Hospital.
Dr Wheeler made her rounds shortly after that visit, and recommended instead that Margaret not be shuttled around Sydney hospitals but go to Canberra, near home, and that a bed be sought in the hospice, as the step before the rehab ward. She emphasised to Margaret that going to the hospice was not a one way street. The hospices were short of beds too, and they would send her home or to rehab whenever they could. Meanwhile, she thought, a rehab ward in a full hospital would provide her with less physiotherapy and rehab resources than the hospice near home. There are more nurses in the hospice with more modest qualifications (EN - enrolled nurses, TAFE qualified) able to do the physical work needed, with less of the Registered Nurses (RN - bachelors degree) and none of the CNS (Clinical Nurse Consultant - post-graduate certificate) or CNC (Clinical Nurse Consultant - masters degrees)as in the teaching hospitals. And, she noted, family and friends would be on hand to wheel her out in the sun, etc. Also, Dr Wheeler noted, the Canberra Hospital rehab team would be able to drop over and evaluate her directly.
As of this morning, a request has been made for a bed in the ACT hospice.
So the game plan is this:
[1] remain in the neurosurgery ward at RNSH in Sydney until a bed is available to
[2] move to a bed in the ACT Hospice (there is a web site with bare information on the ACT hospice http://xray.anu.edu.au/hospital/patient/hospice.html but it is not up to date )
[3] until a bed is available in the Canberra Hospital Rehabilitation Ward
noting this further step too:
[4] and with a view to Margaret getting an MRI scan done in Canberra, and for those scans to be sent, perhaps via Dr Craft, to Dr Wheeler, for further assessment of the appropriateness of resuming temozolomide and thalidomide. The timing of this would relate to [a] Margaret's continuing improved health and mobility, and [b] how soon it is judged that the brain has settled down from the operation - an MRI too soon can throw up a lot of false information. I have not tried to get clarification now of how soon this scan should be done, nor of the criteria Dr Wheeler would use to establish whether resumption of treatment would be appropriate. My guess is that she still fears that regrowth will be dramatic, and that absence of dramatic regrowth would be a major consideration - but also there may be issues of where the regrowth is occuring.
Just how soon we move back to Canberra we do not know. Tomorrow Margaret will have been in this hospital four weeks. She has been enjoying a good team in her four bed room the last few days, and as she has become more aware she has been happy to be there, but today there are changes, and Margaret may join me in being more keen to be back in Canberra. The words 'hospice' and 'palliative care' have understandably seemed threatening to Margaret - though, too, the problem has not been quite that simple, as I found last night that while I knew we had spoken last week about the ACT Hospice and how we walked around the new building last year, beside the lake, when I went through the subject again she said, in reply to my direct question, that she did not know what the hospice was, and was much relieved and pleased by my reminder of our inspection tour last year: "Oh, there!" - So this is a reminder to me, and to others who may be talking to Margaret soon, that there are problems of short term memory. Although things may seem very clear as we talk and conversation may seem complete and happy, Margaret may face some bewilderment by gaps which come and go, and may not be able to express this bewilderment or confusion.
I think that being back in Canberra, now that Margaret is as well as she now seems, will provide a base for further improvement in wellbeing. Also, somewhat relevant, I am more confident of her ability to endure ambulance transport to Canberra.
Tuesday 17 July 2001- options review
On Friday I learned that the rehabilitation specialist had recommended against rehabilitation for Margaret, but the ward medical staff indicated Dr Cook may have a different opinion Monday.
On Saturday Margaret showed great energy and was moving herself around the bed with strength using her left leg and arm. She took the initiative to say good night to the children on the phone in the evening. On Sunday less energy again, and a couple of learning moments about her deficits. In view of her difficulty at times in saying yes or no correctly, I suggested that a nod or shake of the head, or other gestures might do, but it became evident that the meaning of such gesture eluded her. I discussed this with the neuropsychologist Michael Perdices on Monday, who said that this was a 'premotor apraxia' problem. For a quick look at premotor issues, see http://rana.usc.edu:8376/~spoelstr/dbase/abs/abs056.html On Sunday evening, Margaret was again going into her evening agitated state, and saying "I want, I want..." We used the pages of sentences ['I want the bed up'; 'I want the bed down' etc.]I have written out, to no avail, and searched the bed high and low and rearranged and tidied the bedding. Then she suddenly saw and seized her right hand with her left, with great evident relief. It seemed very clear that her anxieties relate to undertainties about her right side, including perception of her right side. Nurses indicated to me they had seen this in stroke patients.
On Monday 16 July the neuro-oncologist, Dr Wheeler, and the neurosurgeon, Dr Cook, returned after two weeks and one week absence respectively. Dr Wheeler had been advised some days ago of the pathology results, the finding of aggressive glioblastoma, and had indicated that Margaret should cease thalidomide and not do another cycle of temozolomide. On Monday Dr Wheeler expressed a preference for Margaret to move to the ACT Hospice and there have maximum comfort and quality of life and directly relevant physiotherapy and possibility of rehabilitation.
Dr Cook came later in the day and was concerned, in the first instance, to establish why, in a CT scan Friday, Margaret showed swelling in the left brain, but not the right. There was no strong evidence of infection, the scalp was looking excellent, the removal of the superior sagittal sinus seemed more likely to produce bilateral than unilateral effects if that were the problem. He ordered a new scan for Tuesday morning, to be reviewed with results of an EEG late Monday, and ordered the dex dose up to 4mg four times daily, from 4mg once daily, in expectation that there could be some retrieval over time of the right side from deficits, given that they had been less immediately after the operation. If there was no significant enhancement on the new scan he wanted to talk to Dr Wheeler about the temozolomide and thalidomide issues and also favoured Margaret, given her past determined attitudes, going a rehab ward.
So here are opposing views. They are expressed, however, by two doctors who work closely as a team, and by doctors for whose abilities we have high regard. It provides some stress and some uncertainty, but also there great value in being part of a thoughtful and open process.
Margaret was asleep during Dr Wheeler's visit; I told her of Dr Wheeler's views later. She was alert, attentive and participant in Dr Cook's visit. I ran through the issues with her later. I wrote a one page note as simply as possible and gave it to her later in the evening. She told me yes she had read it, yes she understood it as she read it, but "When I got to the end I'd forgotten it." I will do my best to ensure that she is able to be involved in the decision process, without exhausting focus on it.
In net terms, we still await a decision, but it should be clear in a day or so. Then it may require time to get a bed for Margaret in Canberra. Transport would have to be by ambulance. Margaret is far from well enough to get in a car, let alone travel in one.
Thursday 12 July 2001 2pm from Dennis in Sydney
Margaret has had two more active and alert days, doing some sitting and standing work with two physiotherapists. She has been speaking more, but not without difficulty and exasperation - and annoyance at her circumstance.
The rehabilitation registrar, Dr Ho, came to see her yesterday and while of the opinion that she was not able to go home, deferred judgement as to her capacity for rehabilitation for consideration by the visiting specialist, Dr Zekur. When Dr Zekur will be able to see her is not clear; the passage of time allows for greater clarity of her status. Given the probability that it will take time to arrange acceptance of Margaret in Canberra in a ward bed, our departure from Sydney may be for some time next week.
Thank you to the many people who have sent messages of support, some of which, from members of internet brain tumour discussion groups, have been faxed to Margaret at the hospital by Denis Strangman [ http://www.geocities.com/oldparl/journey.htm ] . Please be careful if asking Denis to forward messages to note that any messages sent to the hospital for Margaret may be seen by Margaret before me. Also, my last news may have suggested to some that Margaret is in a terminal stage. This is far from the case. Her health is robust, though she is coping (or needing to cope) with deficits to speech and movement - deficits of which there was risk at the time of the first and second operations in May and November 2000. The treatment which has ceased is the anti-tumour treatment; treatments to inhibit seizure and against pressure in the brain are continuing. This operation has reduced seizure potential for now, and dexamethasone dosage (against inflammation, oedema and pressure) has been down at 4mg for some days, and the CT scans, every several days, indicate oedema problems are under control and dex dose is being reduced to enhance healing (inhibition of inflammation also means some inhibition of healing).
Foot, leg, hand and arm massage seems to be of some help in improving sensory awareness in the limbs on the right side, though it does not help directly with restoration of motor capacities. It does also help, though, with keeping the muscles and tendons from hardening up, reducing pain potential and improving ability to use muscle if motor control returns. There is, in any case, in the frontal lobes, a very fine relationship between motor and sensory skills, as where the brain most provide itself with instant updates of movement, with a rapid feedback from perception to motor processes, so massage has broad value.
Margaret has been more aggravated overnight and this morning, which may be a good sign of greater awareness. At lunchtime she said that yes, she had pain in the back, in the legs and in the head, but initially would not accept any pain relief. It seemed to me a good sign that after practical advice on the virtue of accepting pain relief, she accepted a dose of Tramadol also known as Ultram, etc, a synthetic codeine with low opioid effect not inclining to addiction or to constipation.
The discomfort and the difficulty with injured brain in coming to terms with disability is exhausting for Margaret. I have sought to add sentences from this point but find no way of providing an account of the frustrations with dignity preserved. As she said, I am told, another lady in her room last night, when upset about something, "this is so demeaning" - her language skills are very much alive, though intermittent in expression.
Tuesday 10 July 2001 2pm -from Dennis, in Sydney.
The histopathology report on the tumour (conveyed orally to the oncology team, the printed report not available today) indicates that it is not sarcoma, or gliosarcoma, but is a very aggressive glioblastoma as before. There is some speculation that the new growth could arise as a result of radiotherapy, but this risk does not normally occur for several years.
As it is clear that there has been rapid new growth despite chemotherapy, thalidomide will now cease and there will be no more temozolomide treatments.
Margaret has been less responsive over the last two days. It has been possible for me to make several phone calls to family so that they could talk with her and she was a bit more responsive during these calls, but they were wearying. At lunchtime today, Margaret, after great sleepiness, was responding quite well, well enough for me to explain the situation to her, and to get the oncology registrar to speak to her also. The registrar, Dr Chen, told Margaret she had spoken to Dr Wheeler, whose view it was that chemotherapy should cease and that there would be little value in further radiotherapy. Margaret had indicated to me before the operation that she was not really interested in another round of radiotherapy.
Tomorrow the rehabilitation specialist comes to the ward, but as the prerequisite of rehabilitation is the ability to respond, there is no prospect as of today of Margaret being a candidate for rehabilitation. I hope that I may have some opportunity to discuss options for Margaret's care, at home of hospice in Canberra, with the rehab. people, who may have thoughts on the physical issues involved. At the moment Margaret has very little sensory response on the right side, let alone motor capacity, and largely unresponsive.
It is not possible for any doctor to tell us how quickly there will be new, aggressive tumour growth, how long Margaret has. These tumours can race forward, or can pause in their growth. Equally, we cannot know whether the tumours inside the skull will grow faster than that on the outside.
Thursday 5 July 2001 3pm
Yesterday Margaret was moved from intensive care to the neurosurgery ward, after
Dr Cook had seen her. Her responses were not strong, she had had a brief gand
mal or tonic-clonic seizure earlier. The plastic surgery registrar, Dr Lotz,
also saw her and with Dr Cook expressed satisfaction at how the operation wound
on her head was healing. Dr Lotz indicated to us that he and the specialist,
Dr Gates, were watching to see how Margaret's general condition developed and
to see the pathology of the scalp tumour, to see whether a scalp replacement
was appropriate. Such an operation would involve removing the whole latissima
[spelling?] muscle (reach your hand around under your armpit and grasp the first
muscle on your back - that's the one) and placing it, with blood vessels, in
place of the existing scalp, with a skin graft - a six hour operation, and not
without ensuing discomfort.
Thursday morning, Margaret was much as on Wednesday morning. Her left side is fine, but the right leg is week and slow to respond; the right arm and hand much more so. She appears to understand quite a lot, but has great difficulty with expression. When asked "Margaret, what is your surname?" she could not answer, etc. When asked "Do you live in Fisher?" the answer was "Yes". It is a challenge to feed her as she tends to grab rather than indicate what she wants. If, for example, I ask "Do you want more meat or no?" unable to say at times. Dr Cook expects improvement, is very pleased that the scalp continues to heal without infection and expressed the view that Margaret would recover from the operation.
Dr Cook will see Margaret Friday and perhaps Saturday, is away next week but wants to see her in the hospital on his return before she goes to a rehabilitation ward in Canberra. So we are here for nearly two weeks more.
Dr Cook agreed with Dr Wheeler's opinion expressed last week (Dr Wheeler is away this week, these are school holiday weeks) that Margaret could resume temozolomide two weeks after the operation Thalidomide was perhaps missed Monday night but otherwise has continued throughout all this - Dr Cook's view is that this combination has been very effective against the old tumour. Treatment for the new tumour (not held back by the temozolomide and thalidomide) depends on pathology, which was still not available this morning.
Margaret assured me she was not in pain this morning (nil analgesics), but is clearly very uncomfortable, in bed, with the upper bed 20-30% tilted, and with difficulty moving herself, and no doubt very preoccupied by the issues. I was pleased last night that she asked me (took a while to get clear what she was asking) to tell her about the operation. I told her all that had transpired since Monday morning. I am pretty confident that, as things are going, Margaret will be able to understand all the treatment planning and decision issues that may need to be dealt with before leaving the hospital for Canberra week after next.
Tuesday 3 July 2001 3pm
From Dennis, currently in Sydney.
Yesterday Margaret had a major operation, six hours or so. As last November it was performed by Dr Ray Cook at the Royal North Shore Hospital, in Sydney. At this stage she is recovering, but not without difficulty and confusion. There were two CT scans overnight to review reasons for drops in responsiveness; these showed significant oedema and some blood. The key issues in the next several days and beyond will be evident below.
We came to Sydney on Tuesday last week, 26 June, to see neuro-oncologist Dr Helen Wheeler, for regular consultation, after an MRI scan on Monday 25 June in Canberra.
The MRI scan of 25 June can be seen via the link above. We had - Margaret had - been expecting bad news this time, following the seizure events of recent weeks and because of the growth of a lump on her head, and because she knew she was in decline.
Dr Wheeler sent Margaret promptly to the hospital for admission and attention from Dr Cook. Dr Cook had not seen such a development in glioblastoma before. He noted that as more people survived longer with GBMs so more developments were observed. He agreed with me that this development is the ‘reward’ for his gift of six months with last November’s operation.
Yesterday’s operation began by opening the L-shape incision as used before. There was, as expected significant tumour and fluid from tumour in the lump under the scalp. This was removed, but as the tumour had infiltrated the scalp it was not possible to remove without removal of the scalp. Dr Cook had discussed this issue in advance with a cosmetic surgeon. To replace scalp would require removal of tissue from another part of the body and transplantation, an operation of six hours. Margaret’s resources for that, and the impact of such an operation and recovery on her quality of life - while confronted with the problem of survival with the presence of the GBM - did not argue for such an operation.
The previous craniotomy site was reopened, and an additional amount of skull removed, to remove all skull into which tumour had infiltrated. (I must say I felt a tad uneasy with the neurosurgeon using my bald skull to outline all this to myself and Liz and Cat!) This meant that after the rest of the operation a piece of acrylic about the size of a hand was inserted in place of the removed skull.
There was new tumour immediately below the skull and in the meninges. This appeared something new, something different from the original tumour. This tumour extended into the ‘superior saggital sinus’. (The meninges are the grey matter covering for the lobes of the brain. They cover both left and right lobes and go down between the lobes. There is also a stretch of meninges over the top, over the space where the lobes meet. So, running from front to back, down the middle of the top of the brain, between these three layers of meninges, is a sinus, or space, called the superior saggital sinus (SSS), which is acts like a ‘vein’ in being the drain for collection of blood from the brain.) The front half of Margaret’s SSS was blocked by tumour, and had to be removed. A critical issue now is how well Margaret can cope with this amount of the sinus removed. The events of the first 24 hours post-operation, that is, to now, are problems related to blood and oedema in the brain, and may relate to this broad question. Diminished drainage facility may have consequences for adequacy of blood circulation for longer too, creating the sorts of problems that can cause stroke.
Dr Cook also looked in the previous incision site and removed the modest regrowth of tumour there.
A new artificial dura (brain lining), almost as big as a shower cap, was installed.
In summary, the tangle of issues is thus:
(1) Margaret has to, first up, get through this recovery phase without serious deficit.
(2) The original tumour is responding well, kept well in check, by temozolomide and thalidomide (thalidomide continues through this period, temozolomide has to be two weeks away).
(3) However, the outbreak in the top of the brain seems quite different, and has behaved in very rare manner, breaking out through the dura, infiltrating the skull, in the manner of a sarcoma, growing on top of the skull and infiltrating the scalp too.
(4) This new thing has been removed as thoroughly as possible from all locations except the scalp; some work was done to get some of it from the bottom of the scalp but after all the radiotherapy, etc., the scalp is as thin as 2mm in places.
(5) The removal of the front half of the SSS raises issues of adequacy of circulation to the frontal lobe especially, with impact on survival prospects.
(6) The pathology report on this new tumour material is needed to assess what can be done about it.
(7) The great conundrum arises from this conflict:
[a] the old tumour, while responding well to medication, controlled well, is nonetheless of a type (GBM) which could go on responding, under control, or could, from what is known of other cases, mutate further and roar away to destructive size at any time.
[b] The new tumour, now out of the skull, poses problems of identifying treatment and achieving treatment response, and is probably of a type which can travel elsewhere in the body.
All this makes a hard load of issues for Margaret to consider when her mind is clear. When we talked a few days ago about the possibility that this new site may be a target for more radiotherapy, Margaret was firmly of the view that she did not want to go through such an exhausting six week process if it only granted a short amount of survival time. It is a very hard potential choice between vicious competing killer tumours, with the added irony that the fast grower, faster but potentially less painful killer, seems under control now. These points are set out now to identify the prospective issues; we need the pathology report and Margaret’s mental clarity for proper decision making. As usual, decisions will need to be made swiftly.