THE ROLLER-COASTER RIDE

Return to Marg's journey webpage

Living with a brain tumour has often been described as a roller-coaster ride.

The following e-mails, which were sent by Penny Phillips of Sydney, Australia, to Marg and I and the OzBrainTumour discussion list dramatically demonstrate the terrifying ups and downs the journey can sometimes take. In this case the journey was with her husband Brian, who passed away on 1 March 2001.

Penny has generously agreed to the reproduction of her e-mails here. As she says: "Please use anything you want from my e-mails as they say "knowledge is power" and we all need to know as much as possible about this disease to try and get the better of it!!!" Penny can be contacted at pennyphillips1@bigpond.com

Thank you Penny.

A few weeks or a second operation ...

15 November, 2000

Hi Marg

My husband was diagnosed in June this year with GBM grade 4 after a three month investigation including numerous blood tests, cat scans MRI’s, Lumbar puncture and two biopsies.

The second biopsy revealed a tumour and a following craniotomy revealed the worse, I now know the meaning of having your life turned upside down, the last few months have been the worse as you yourself know it is a difficult path to walk.

We are now at a crossroad as despite radiation and medications he has developed extensive oedema which has given him more seizures and some confusion. Do we seek more treatment or let nature take its course!!!!

He is taking 12 mg of Dex along with a myriad of other tablets and this has seen a dramatic improvement but we’re unsure of where to go now, the neurosurgeon has given him a few weeks or an option of a lobectomy to clean things up a little which could extend his life by a few months we are now getting some other opinions from or neurologist and the oncologist.

I just want to say that over the months I have spent hours and hours on the net looking at all the information available and until I came along your web site I was swimming in a sea of words and getting more confused.

I have found your web site and your other links to be wonderful, please keep it going as I am sure you are helping others like myself to feel not so alone in this struggle.

My best wishes to you and your family

Brian and Penny Phillips

Sydney

If you delay it could be too late ...

16 November, 2000

Hello Denis,

Just want to thank you for your e-mails, do hope Marg is having a GOOD day. We value each and every one of them.

Have just had a home visit from our neurologist who explained a bit more about the lebectomy no guarantees either way about whether it would help or not.

He was not very helpful about chemotherapy drugs we get the impression he thinks Brian would be better just taking the Dex and anti seizure drugs.

He did say if we left the decision too long it could be too late to give the operation a go.

Next contact is the Oncologist and see what he has to say.

Regards

Penny

17 November, 2000

Have to decide pretty soon

Dear Denis

Yes, I would like to receive anything you have about a second operation as we have to decide pretty soon.

Thank you very much

Penny

Hospital Wednesday, second operation next Tuesday ...

20 November, 2000

Dear Denis and Marg

Hope you had a good weekend, we have had a hard one making our decision.

Thank you for all the e-mails you sent me they really helped in looking at our options.

We have now decided that Brian will have the LEBECTOMY and he is booked in for Wednesday at the Prince of Wales Hospital because he is taking Warfarin for blood clots they have to do some pre-op work to make sure his blood is okay for the op, so they won’t be operating until next Tuesday.

We realise the risks and that it is merely palliative surgery but if this awful disease teaches you anything it is to value each and everyday and if having this operation will give us a few more days together then that is what we will do, we are thinking positive.

Regards

Penny

Swelling down - operation cancelled !!!...

24 November, 2000

Dear Margaret and Denis

Thankyou for your kind wishes for Brian but there has been a change of plan following a cat scan undertaken yesterday.

We were told this morning that the swelling had gone down amazingly and the surgeon does not think an operation is neccesary at this stage, talk about a bombshell as we had spent three weeks agonising over the decision to go
ahead.

Wonderful news though as Brian gets to keep his newly grown hair for a little longer and we get to have him home again at the weekend.

I mentioned the newly formed brain tumour discussion group to the surgeon maybe I will pass on a poster to him as well, and stick one on the poster board at our oncology clinic.

Hope Margaret had a good day too!!!!!

Regards

Penny

P S Re: Lobectomy I'm unsure about a total lobe removal, in Brians case as the tumour is located mostly in the frontal lobe the surgeon was going to remove a large part!!!!!!

24 November, 2000 (To the OzBrainTumour List)

I can't believe how quickly this has happened, I have spent the last six months wondering if there is anyone else in Australia going through the same thing as us and its only been in the last few weeks that I have discovered that we aren't alone on this difficult road.

Briefly my husband Brian had a leg seizure in February this year, the doctor at first thought it might be the sciatica nerve but after a couple more seizures he was whisked off for a cat scan which revealed a shadow which needed investigation.

After a MRI, two biopsys, a lumbar puncture and a craniotomy it was confirmed as a GBM4, this all took about 4 months. After this he had 20 rounds of radiation and due to continued seizures a myriad of tablets were prescribed. At the present time he takes

Tegretol 1200mg
Epilim 3000mg
Dexamethasone 12mg
Rani's
Amitryphiline
Warfarin

A total of 23 tablets a day

He has also lost most of the use of his left side and is in a wheelchair and has suffered from blood clots which meant spending a week in hospital and having to start on Warfarin a blood thinning agent.

Three weeks ago he suffered a bad couple of seizures plus was very disorientated, he was rushed to hospital where we were told that the oedema in his brain was extensive and the only option would be to do a Lobectomy, without treatment he maybe had a couple of weeks left.

We agonised over the decision but by increasing his dex within a couple of days he was back to his usual self and feeling pretty good and we enjoyed a couple of very good weeks, then we decided that he should have the operation and he was admitted to The Prince of Wales hospital on Wednesday.

Yesterday he had another cat scan prior to the operation and it showed the swelling had been reduced enormously and the surgeon felt it was unneccessary to go ahead with the operation as it could do more harm than good, it was a bit of a bombshell as we had psyched ourselves up for the op.

We are still reeling from this news, it means he gets to keep his hair for a little longer and we get to have him home for the weekend and hopefully can start to look forward to xmas and maybe the new year.

On top of this I can now look forward to hearing from some fellow travellers along this difficult road.

Regards to all

Penny P

26 November, 2000 (to the OzBrainTumour List)

Hi Julie

Have just read your introduction and am thinking how wonderful your sister must feel do hope all goes well for her, I am beginning to believe in positive thinking as my hubby Brian is doing pretty good too, you read some awful sad stories on the web that you start to think there is no hope then you see a good one and it really lifts you up again. He has just come out of hospital this morning following an aborted Lobectomy (debaulking op) his cat scan looked so good the surgeon wouldn't operate so we are feeling pretty lucky too. I think it is great that we have our own brain tumour list now as I have spent hours trying to find information in Australia but it seems we are a bit backward in our brain tumour research and facilities maybe that will change now.

All for now

Penny and Brian Phillips GBM4 introduction sent previously.
We are Sydneysiders

Drugs a possibility?

29 November, 2000

What I'd like to know today is how do you get treatment with drugs i.e. Temodal/Thalidomide, I am reading about people on them but I cannot get anywhere with our doctors the neurologist/oncologist just don't want to talk about it as they seem to think it is not an option, only our neurosurgeon is a little interested . Any suggestions ?????

In a semi-coma - last days with us ...

1 December, 2000

Hi Marg and Denis

Just wanted you to know that despite our good news last week on Brian's Cat scan things have taken a turn for the worse, he was admitted on Wednesday with terrible headaches and it appears from another scan that the tumour has doubled in size and there is also another one plus a lot of swelling.

Due to this Brian has lapsed into a semi-coma and we have brought him home to share his last days with us all, they say only a few days to go- it is heartbreaking and my heart goes out to all those other BT sufferers, it is such a roller-coaster ride and I hope some of you make it to the end, it wasn't to be for us.

Keep up the good work

Regards

Penny Phillips

Got him on a boat ...

5 December, 2000

I have just been reading our local paper (Wentworth Courier Sydney ) and have found a good article for us all, I have transcribed it below.

A revolutionary new techique being used in the treatment of brain tumours ould pave the way towards a healthier future for some cancer patients.

The procedure, called intensity modulated radiation therapy (IMRT) is being used to treat patients at the Prince of Wales Hspital at Randwick ....

..... All this is too late for my husband who is now in the final stages of his GBM, he has made a remarkable recovery from last week's traumatic days which saw him in hospital in a coma and the doctors only gave him a few days - yesterday we managed to get him out on a boat, quite an ordeal, but worth it as we saw him laugh and gave him a few hours doing something he really enjoys, this is all we are looking at now but we will grab as many as we can get.

Best wishes to all

Penny Phillips wife of Brian GBM4

A turn around happened - now up and about !!!...

7 December

Hi there

An amazing thing has happened for us, last week we spent all night at the hospital as we were told Brian may not last the night and the next day we brought him home to die, we spent a couple of really upsetting nights and then the turn around happened he is now up and about reading the paper, watching TV, we are taking him out and about and generally we are back where we were three weeks ago it is amazing.

The hospice nurse came around and couldn’t believe her eyes as she has been preparing us for the end.

What is going on here has anyone been through something similar we just don’t know what to think about anything anymore, getting very confused.

He is on 16 mg of Dex a day and has a small amount of morphine for the pain and Clonazepan for his seizures which seems to be working better than his epilims and tegretols he was taking before - we are wondering where to go now, should we continue seeking treatment or just leave things as they are???

Any thoughts would be helpful

Penny w/o Brian GBM4

Knowledge is power

9 December, 2000

Dear Denis

Please use anything you want from my e-mails as they say " knowledge is power" and we all need to know as much as possible about this disease to try and get the better of it!!!

I contacted our neuro-surgeon yesterday by e-mail to tell him about Brian, at the same time I forwarded him a poster for the OzBrain Tumour group and asked him to photocopy and leave out in his consulting rooms. Hope he does!!

I think Marg looks wonderful from your recent pics - we have been with the wheelchair for six months now and I have great respect for anyone who has to use one I never realised how much "wheelies" have to put up with as far as facilities go even our doctors surgery is wheelchair unfriendly.

Best wishes to all

Penny

To be assessed for Temodar

18 December, 2000

Dear Denis   Sorry to hear about Marg hope she is starting to feel a little better we have found the dex to be a great pick me up although we all know about the downside as well.   When I read your diary it put me back a week or two to our traumatic few days with Brian and his headaches nausea and then the coma, pretty frightening isn't it?   I think I told you about the incredible turn around with his condition well I'm pleased to say it has continued and we now have another appointment with the oncologist on Thursday to assess Brian for Temodal.   I would not have known about the new status of Temodal without the help of our new BT list it is certainly helping us all keep in touch with the latest news in Australia.   Best wishes to you and Marg for xmas do hope you have a happy one with all your family in town.   Penny.

22 December, 2000

Brian was prescribed Temodar yesterday

Hi

Glad to hear Marg gave the doctor an ear- full we have come across a lot of mistakes during our visits to the hospital and I have had to be fully alert to what the nurses have been giving Brian as far as medications go, on a number of occasions I have had to correct the dosages given, I'm sure one of the sisters was glad to see the back of me!!!!!

Anyway, good that they have got the right diagnoses now, Brian was on warfarin for four months because of leg clots one which required a stay in hospital for a week on Heparin as it was looking dangerous, he is off it at the moment but I keep a close watch on his leg and if there is the slightest swelling we get the ice pack out and elevate his leg this usually get it down by the morning, hope Marg goes okay with the new drug trial.

Good news (I think) yesterday Brian was prescribed Temodal and will start the treatment after xmas probably Wednesday next week, if it hadn't been for the OzBrain group I would not have known it was available so thanks to all, hopefully it will give some good results we are quietly confident.
Best wishes for  xmas and may the new year bring new hope for us all.
Penny P

30 December, 2000

Going to be grandparents again

Hi Everyone   Well so far so good Brian is about to take his last Temodal for this his first round of treatment, we have been pleasantly surprised as he has had none of the expected side effects, no need for laxatives all is working well in that region and despite the worries about nausea not one comment from him about feeling sick in any way, in fact he has been eating like a horse and the only thing we have had is a lack of sleep.!!!!!!!!!!!!!!!!!!   He has been only having four to five hours a night and his energy levels have been marvellous the next day, major problem is he tends to fall asleep about 9 p.m. and is awake at 2.30 a.m. ready to start the day unlike myself who enjoys at least eight hours sleep a night or at least I used too!!!!!!!!!!!!!!   One other occurence is he seems to think his left hand has some more movement - his whole left side has been paralysed since a biopsy op in April 00 does this mean some pressure is being relieved on that part of his brain!!!!!   No sign of the "Temodal Flare " not sure if this is good news or bad, guess we will have to see how the next couple of days/weeks pan out, we have an appointment with the onclogist on January 18th ( Brians 54th birthday ) and a blood count required before we go hopefully we can get a cat scan or MRI some time soon and see what is happening.   Wishing you all a Happy New Year may a cure be just around the corner.     Best Wishes   Penny P w/o Brian gbm4   PS Have just had some good news we are going to be grand parents again in September - our fourth grand child

1 January, 2001

On a winning streak ...

Dear Denis   Sorry to hear about Marg do hope she is starting to recover from the ordeal, it sounds very much like what Brian went through some weeks ago which apparently was due to necrosis from the radiation or thats what the docs decided on!!!!   This was when they gave us little hope and now weeks later we are on a winning streak and he is doing very well so hang in there.   Hope the CT scan comes back okay.   Best wishes to all of you   Penny w/o Brian gbm4 

4 January, 2001

Low energy levels

Hi All   Brian completed his first round of Temodal on 30th Dec and yesterday and today he has been complaining of low energy levels, he doesn't want to go to sleep but doesn't seem to be able to do much, from what I've read this seems to be the norm, does it last for long?? And is there anything I could try to boost his energy levels???   Any info welcome   Penny P  

11 January 2001

Breathlessness

Hi   Just a quick question has anyone experienced breathlessness when on Temodal, Brian has been having a little trouble and a visit to the local GP ruled out any chest infection and I don't think I have seen it listed as a side-effect from Temodal.   The doc seemed to veer towards maybe the result of reducing his Dex, now down to 12mg from 16mg.   Penny P w/o Brian gbm dx June00 First round of Temodal completed waiting for results of blood count next week.

13 January, 2001

Going to the gym twice a week ...

Hi Denis

I have just checked my dates and am amazed that it was on 1st December 2000 that Brian was discharged from hospital for terminal care at home and now six weeks later he is doing very well, has finished his first round of Temodal and is even going to the Gym twice a week to try and get to walk again - quite incredible!!!!

As far as a second operation-debaulking is concerned -  when he was so ill the NS said it would be inhumane to even try and to date no further mention has been made about this course of action.
When we found out Temodal was available we just jumped at the chance to be trying something and our NS advised us to contact the oncologist as soon as possible. He didn't come up with the idea of another op and we didn't persue it thinking it was out of the picture, maybe this was a mistake as I have now found out that the drug does work better when there is less necrosis etc to work around.
It is something to ask the onc on Thursday when we go and see him to see if Brian can go onto the second round of Temodal, his last cat scan done in December was pretty awful with considerable mid-line shift and the tumour had doubled in size, will be very interesting to see the next one since he has been doing so well can only hope that things have improved a lot!!!

Best wishes to you and Marg
Penny

18 January 2001

54th birthday!

Hi all,   Another milestone has been reached Brian had his 54th birthday today something we thought was out of the question in early December when they gave him 24 hours to live!!!!   Also a visit to the oncologist who has said its okay to start on his second round of Temodal , as usual we had an hour and half to wait before seeing him and then we  had about 8 minutes of his time - no time to ask about his blood counts which I am trying to understand, it was just everything is okay see you again in four weeks time!!!!!!!!!!!   We were worried that his platelets were going low as he has gone from 238 in December to 133 ( is this thousands or what, as people talk about 100,000"s???) As I understand it the normal range is 150 -400!!!   Its very confusing I think what I should find out is the easiest way to get his platelets up a bit, should he be taking a drug or is there something natural I can easily get to help the problem?? I don't want them to keep going down!!!   I also have to reduce his dex again, at the moment he is on 12 mgs but apparently nearly all his symptoms he has can be attributed to the Dex i.e. Breathing difficulties, swollen ankle, insomnia and weight gain so we have been told to reduce it by 2 mgs a week at least until we get to 4 mgs, hopefully he won't have an adverse reaction to the reduction which has happened before on two occasions, its a worrisome drug wonderful for one problem but causes another dozen or more in its wake!!!   While at the Prince of Wales today I did notice in passing that they seem to have a new oncology advice service which I am going to find out about tomorrow maybe pass on one of our flyers to them.   Great news  that Margaret A is starting her second round of Temodal also today.   Haven't had any news from Jo-anne this week do hope all is going okay and Rob is recovering.     Best wishes     Penny w/o Brian dx June00 gbm

29 January 2001 (to the OzBrainTumour list)

What happens if Temodal fails?

Dear Jo-Anne

So sorry to hear your news like everyone else just wish we could do something to help, its just not fair is it!!!!
I can see myself being in the same situation when they tell me that the Temodal is doing no good, I'm dreading that moment as I don't think there are any more options !!!!!
I agree with Kimber that where there is life there is hope so we must cling to that - it is awful to feel you are giving up but I guess its not giving up its really acceptance - I know when Brian was given days I just prayed that it was going to be quick as its the waiting that is so hard, fortunately my prayers weren't answered and we have had another two months which we thought were lost.
Our thoughts are with you - wish there was some easy answers!!!
Penny w/o Brian

1 February 2001

Brian has been excessively thirsty

Hi All,

I have another query which I can't find listed in side effects etc, for the last couple of days Brian has been excessively thirsty with increasing urination - he finished his second round of Temodal a week ago and is just starting to get some more energy back.
Has anyone else had these problems?????

Penny w/o Brian gbm iv

4 February, 2001 (to the OzBrainTumour list)

His one aim is to walk again

Dear Pauline and Mick

Hope you are back on line and are getting your messages, I really miss them if I don't hear anything for a few days.

Great news Mick took a couple of steps - I know what it must mean to him as Brian has been in a wheelchair for the past six months or more and has been doing physio to try and get some movement in his leg, its his left one and it may have got damaged after his craniotomy so we aren't sure whether he will ever get to take any steps but it is his one aim to walk again - I think if he had been able to walk half the battle would have been won, as it is it has just added to the burden and the fight against the gbm, but he's not giving up!!!!!!!
Good luck to Mick heres to more steps to come.
Hope you get a cool change in the weather soon !!!!

Best wishes
Penny and Brian - Sydney 25 degrees

6 February, 2001 (to the OzBrain Tumour list)

(Steroid-induced) diabetes

We think we have an answer to Brians excessive thirst, he had a glucose test today and it turned out to be very high 17.4, we contacted our oncologist who has advised us to see someone tomorrow at the Diabetes Clinic at the Prince of Wales Hospital.
As to why he has this problem I'm unsure I know nothing about diabetes there has been a suggestion that the Dex can cause this over a long period, he has been on it nearly a year now, but I haven't seen it listed as a side effect, hopefully we will learn more about this tomorrow, we also have a appointment with the onc on Thursday.
You'd think we have enough to worry about, I just hope it doesn't interfere with his next Temodal round.
Penny w/o Brian gbm4 next week will be a year since symptoms started.

15 February 2001

Diabetes problems

Unfortunately we are having awful trouble with Brians diabetes, his blood sugar levels are so high and despite drugs and the advice of the dietician we can't seem to bring them down, tomorrow we have another appointment with the endocrinologist who is talking of moving onto insulin injections. At the moment we are testing his levels 8 times a day!!!!!
Was any mention made of a diabetes problem connected to taking dexamethasone by Dr Wheeler????
We have anyway started on the third round of Temodal but he is very tired already - usually it is the fifth or sixth day that it gets to him but I assume it is a combination of the drugs and the sugar problem, also trying to reduce his dex down another 1mg this will mean he is taking 7mg a day which is great compared to 16 mg a few weeks ago.
Must admit to some confusion lately what with all the pills to pop and blood levels to take and of course remembering the order to take the Temodal anyone got any tips at keeping on top of all this???
Regards to all
Penny

19 February, 2001

Not so good this time .. better news coming I hope

Brian has finished his third round of Temodal but hasn't done so good this time - constipation again and very bad headaches from the third day of taking the tablets, has been having a lot of morphine to handle the pain but has confusion as well whether from the morphine or the swelling who knows!!!  Could this be the "flare up" thats talked about????

Have just spoken to onc and have immediately increased his dex by 4mg now back to 12, hopefully he will improve by the end of the day else its onto blood tests etc to try and find the cause.

Insulin injections were started two days ago but still has a high BSL reading so that is being increased too!!!!!!!

Better news coming I hope
Penny

25 February, 2001 (to the OzBrainTumour list)

A bad week

It has been confirmed that Brian has diabetes and we have spent a bad week trying to get his blood sugar levels down as well as battling some terrible headaches he has been getting - they started a week ago just after finishing his third round of Temodal.
The onc put his dex back up to 12mg to try and see if he could have some relief from them but last night he was in tears with the pain and we have increased his dosage of liquid morphine to try and get on top off them, it is such a battle with the increasing the dex means an increase in BSL . He also has bad constipation probably due to initially the Temodal but now made worse from all the morphine!!!!!!!!!!!!!!!
We are contacting the onc tomorrow who will advise whether to go back up to 16mg of Dex and whether an early scan is due.
We are questioning whether the headaches could be from the diabetes, from a progression of the tumour or maybe necrosis from the Temodal hopefully we will find out this week, the not knowing is the real stress factor on top of everything else!!!!
Penny w/o Brian gbm4

25 February 2001

It happens on weekends!

Dear Denis S

Just read of Marg's relapse hope its not too bad and she will quickly be able to go home, it always seems to happen at weekends!!!!!!!
Penny P.

27 February, 2001

We are all devastated again ... we have been married 33 years this year

Have just read my e mails and am pleased to see some good news - so glad Marg has made such a wonderful recovery and Liz is having such success with her chemo wish I had some good news too.

Brian had his cat scan today ( no, not an MRI as you all suggested ) all three specialists recommended that a cat scan was quite adequate ) anyway the news was not good, the headaches rather than being attributed to the swelling caused by the Temodal it seems the tumour as increased drastically and is actually " eating brain tissue " as described by the oncologist, he has such a lovely way with words!!!!!

He says the Temodal has obviously done no good and should be discontinued and we should contact the palliative care team again to see the next few weeks through, morphine being the only help for his headaches and plenty of it.

We are all devastated again, you get your hopes up time and time again only to have them squashed its too much to handle and I am trying hard to hold together for Brians sake, we wondered whether to tell him the truth when he asked but decided he should know the worse, he is just so brave, a few tears when thinking of his next grandchild due in August and the three we already have were the main cause of sadness. We have been married 33 years this year and we have had some wonderful times but we were still planning on enjoying our grand children and doing all the retirement things we had thought about, its just not fair.

Tomorrow we will contact our palliative care nurse and get her to hep us sort out his medications to make him as comfortable as he can be, he has suffered enough.

My son said the other day about how tragic this whole situation was but also how he has learnt so much over the past year, not only about sickness and hospitals and caring for someone but also the sacrifices we make, the kindness of people and the way we have all pulled together as a family to help dad through this, maybe there is a plus side to this experience but somehow I wish we didn't have to go through it.

He is sleeping soundly at the moment and looking quite peaceful which is what we must hope for in the coming weeks.

Penny w/o Brian 54 years old - gbm4 dx June 00

1 March, 2001 (to the OzBrainTumour list)

Brian passed away at 3.30 a.m. ... I have lost more than a husband I have lost my best friend and soul mate

Dear Group

Brian passed away this morning at 3.30 am although we had been expecting it for so long the actual reality of it has hit us very hard, he had suffered so much in the last few weeks first with the diabetes problem and then a terrible week of shocking headaches.

Yesterday after the bad news about the scan we called in the hospice team and it wasn't until they had administered some strong pain medication that he went into another coma, I feel that the pain had kept him with us and when once he was at peace with them he felt he could let go.

He spent 10 hours dying and I pray at the end he knew nothing about it I don't think he did as we had had no response from him since early afternoon, now at last he is at peace after a year fought so bravely with hardly a complaint all through the awful months.

My heart is breaking and I don't think the tears will ever end, I have lost more than a husband I have lost my best friend and soul mate, how to go on I don't know.

I just hope you all have much better luck and that the magic cure is just around the corner for a truly awful disease.

All the best
Penny w/o Brian gbm4 dx June00 at peace March01

12 March, 2001

Farewell to Brian

Hi Everyone

On friday 9th March we finally said our goodbyes to a very wonderful and brave man and one we will never forget, it has been the hardest week of my life.

It was an overcast day but this didn't stop over 100 of us meeting and telling tales of the old days when Brian was the life and soul of  the parties and the many pranks he got up to in his 25years of journalism, some very old friends turned up and although he hadn't seen many over the past few years it was gratifying to know they hadn't forgotten him.

Darren took his ashes out on his surfboard and scattered them in the water while we had a minutes silence to remember him - I told the grand children we can always now look upon the sea and talk and think about grandad no matter where we were in the world.

Now we have to learn to live without him, his smiles his laughter and his company gone forever but not the memories they can never be erased.

I will stay subscribed to the group to check on how you are all going, there seems to be some really good news happening all round and I'm sure we are winning the fight against this disease - so many are doing great.

Someone sent me some money towards cancer research instead of flowers and I was wondering if we ever got a fund going for Brain research??

All my very best wishes to everyone
Pennyw/o Brian gbm4 dx June00  passed away March1st01

The kind of experience which Penny, Brian, and their family had to go through would challenge the strongest among us. The following is a prayer which Fr Peter Sheridan, the Catholic Chaplain at the Canberra Hospital, gave me on 16 August 2000 when it seemed that my wife Marg would not recover and he administered the Sacrament of Anointing of the Sick to her. I subsequently discovered, via a Poor Clare Sister at Carlow in Ireland, that the prayer has been attributed to Pope John Paul XXIII. Those who believe in prayer might find it useful -

Denis S, 14 March 2001.