Cancer at the junction

Details of Peter's Funeral

2010-07-18T17:25:00.002+10:00

Hello,

Details of Peters funeral are:

Wednesday 21 July 2010 at 2pm

Belconnen Uniting Church
Conley Drive
Melba ACT 2615.

We ask that there are no flower donations, in leiu please donate money to Clare Holland House
Clare Holland House Home Page

Printed details of the funeral will appear in the Canberra Times on Monday the 19th of July 2010.

Canberra, Australia snusher@gmail.com

Juliet's link to Davis Family Photos, with a Peter Davis theme!

2010-07-18T17:21:00.001+10:00

Hello,

Juliet has posted to facebook some Davis photos, that you are welcome to look at.

Click on the link:

Peter Davis & Family Photo's on Facebook

Regards,
Lynne & Juliet

Canberra, Australia snusher@gmail.com

Rest in Peace my darling

2010-07-17T12:46:00.000+10:00

Canberra, Australia snusher@gmail.com

Message from Lynne

Juliet, Gina & I spent Friday with Peter. He was resting quietly & gradually slipping away.

I was a volunteer at the Hospice for 5 years from 1998 until 2003 and started by doing the evening shift, for the meal times from 5.30pm on Friday nights into the evening. I would follow a remarkable pair of volunteers, Edna & Arthur who would do the afternoon shift and give me a handover as I arrived to let me know about the patients & their carers. Edna & Arthur have done this shift now for 15 years and were on in the afternoon & I took great pleasure in spending some time with them. Arthur is now 84 years and says that he will stop when Edna tells him he has finished his training. Another volunteer I have worked with, Peter came on to do the evening shift & I caught up with him also. We all spent time quietly talking in Peter's room. They say that people can hear what is going on around them & the voices of their loved ones, even when they are not able to speak any more themselves. It was wonderful to renew the friendships & spend this last watch and time with them, and gave the Hospice time a sense of closure.

At 9.30 pm I gave Peter a good night kiss and told him I was going to bed and wished him sweet dreams. I curled up in my bed in the room near him, and third night we had spent together there. The night nurse came with her torch just before 10.00 pm, shone the light on Peter & checked his pulse, and came over to me to tell me Peter had just passed away. Peter looked so very peaceful; at rest at last. No more dark & difficult long nights.

I rang Juliet & Gina & they came. We had arranged that they would arrive in the morning if Peter slept thru the night. (The room was only big enough for one person to sleep over; I wanted it to be me there to do anything needed in these final precious night hours).

Peter was lying clean & comfy, freshly shaved & washed in fresh pyjames with a beautiful red rose on his pillow covered with our soft butterfly rug. We said our final goodbyes & I gave him a kiss for his last journey. We packed up the room, came home, and were eating raisin toast & cups of tea at midnight. Such a thoughtful time to choose to go, in the early evening & not 3 or 4 am with frosted cars...but then, Peter has always been a thoughtful & caring man. We all went off to electric blankets toasted beds and to sleep, our final vigil completed.

Peter & I celebrated our 38th wedding anniversary in May. I have been blessed to be able to spend these years with this remarkable man, and share in the raising & development of our two children, Jeremy & Juliet. Peter was so thrilled to be a granfather to Finn, and know that a further generation has been created in him. Peter has touched so many lives and will live on in the memories we have of him. Thank you all for your emails, phone calls & care and love for us.

We are arranging the funeral and expect that it will be on Wed afternoon 21 July, and I will put the details up on the blog.

Peter is walking the very last of his precious 500 miles right now

2010-07-16T13:24:00.000+10:00

Canberra, Australia snusher@gmail.com

Quick message from Lynne

Peter was admitted to Clare Holland House for pain managment last Wed, just a fleeting 9 days ago. We were told that the recent CT scan showed that the lungs & liver were affected by cancer also, as well as the stomach. We have had a few beautiful days together, and our time with Jeremy & Finn was wonderful, with Peter walking and we all walked around the grounds and to the playground with Finn on Sat.

On Sunday Peter needed a wheel chair to move about outside his room, but has been fine walking within his own room. Peter had a leave pass for last Friday afternoon & came home. Our neice Vanessa & her friend Rikki & small son Luca of 15 months came & we all spent the afternoon together, with the 2 small boys able to share the toys scatterd around. I drove Peter back to CHH for the evening.

Tuesday 13 July the medical team advised me that any family Peter needed to see should come straight away as Peter's liver was deteriorating quickly and he only had days to live. Daughter Juliet & sister Gina both arrived on Wed flights, Juliet in the morning, Gina in the afternoon. Juliet had a very special morning chatting to her Dad, with me coming & going & giving them time together. Our neice Vanessa met Gina's flight, and came to CHH bringing her two boys, our nephews, Artie & Benny. Benny had done a special painting for Peter which is on his wall. We were all in tears as Peter hugged each one tightly & said goodbye as they left. Gina gave Peter a big hug for everyone in the family, for Rachel & John in London and Rebecca, currently in Canada. She is doing a wonderful job representing all his close family. Thank you family for all your recent phone calls & emails. Gina brought some early photos taken when she & Peter were small, the 1st 2 of the 5 children, & one photo of the 4 children, before the baby of the family Rebecca arrived. Peter's Mum was a very beautiful young Mum, always so proud of her brood. We handed them around & decided that Finn definitely looked like his Grandad. Peter & I had not seen the photos before.

Yesterday Peter was able to say a few words, knew & greeted the people around him. The last 2 nights I have slept at CHH, so I could do anything that Peter needed, calling the night nurses to help out when needed. With the changing of the guard, Juliet & Gina are sharing daytime with Peter now, and I have come home. I will go back shortly and be there tonight. Peter was put on a syringe driver midday yesterday. This is attached to him and administers medication to relieve pain & nausea around the clock. Peter was sleeping peacefully as I left, and will gradually sleep more.

Thanks for all your love, prayers & support for us all. It is so good to have Juliet, Gian & Ness here for those last precious 500 miles that Peter is travelling now.

Welcome visit from Jeremy & Finn

2010-07-11T22:34:00.000+10:00

Canberra, Australia snusher@gmail.com
Message from Lynne

On Friday I collected Jeremy & Finn from the airport & we stopped at Clare Holland House to collect Peter. We spent an enjoyable afternoon at home. Our neice, Vanessa, friend Rikki and small son Luca 15 months, (2 months older than Finn) joined us for the afternoon, with the little boys happy to share the toy pool scattered around. We were in Mel for Finn's birthday in early May when he was just walking, a few steps & he'd sit down. Now he is walking everywhere & I had to think to child proof the living room a little before those bright blue eyes and busy chubby hands moved in. The favourite word is "that." One hand will point and the idea is to work out just what is wanted; as often a number of items could be the possible chosen one. Finn has an outgoing happy nature and it was a delight to have him (and his Dad!) around.

I took Peter back at 7.00 pm Friday as had been agreed. Jeremy & Finn spent some time at Clare Holland House on Saturday, and the playground was thoroughly explored. The slippery slide was the favourite part. The airport is just 10 mins drive away, which is very convenient for relatives arriving to see their family members in the Hospice.

It was an exciting weekend for Peter and took its toll. He was very tired today and struggled to walk round the inside passages of the hospice. (There are side rails along the walls to hold onto). Peter vomitted in the early morning and again late morning, and was given maxilon to stop nausea. We decided to use the wheel chair as transport for him today, and I am fine pushing it around the level passages of the Hospice. One of volunteers took the wheel chair outside & around the Hospice grounds for a breath of fresh air for us all. We had 2 beautiful ravens visit outside Peter's room today, and a pair of swans with just one large cygnet passing by in the waters of the lake.....every day brings birdlife to delight us both, and every day is precious time to spend with this very special man.

Location! Location! to a room with lake views

2010-07-08T21:09:00.000+10:00

Canberra, Australia snusher@gmail.com

Message from Lynne

The CT scan was done on Mon and we went afterwards to Canberra Hospital where Peter told the nurse in charge of the trials that he wanted to be taken off the trial and stop taking the drugs. This was agreed and the unused tablets returned. We were both relieved that this decision had been taken. On Wed we were given the results. We know this is an aggressive tumour. As well as being located in Peter's stomach, it has now spread to the lungs & the liver. (With this outcome, Peter would have been taken off the trial drug anyway). Now we know that it is just Peter and the cancer in the equation; as we were never sure whether the trial drug or the cancer were responsible for side effects.

I rang the Palliative Care Support team on Wed and said that the medications Peter was taking were keeping him comfortable during the days, but pain was moving in nightly, with 2 or 3 break thru tablets needed to stop the pain. The doctor was consulted we were told that a bed was available at Clare Holland House (the ACT Hospice) and Peter checked in early afternoon.

Peter has a comfy room to himself with a sunny area outside his sliding door. We can sit there and take our daily dose of Vitamin D in gentle Canberra sunshine of around 12 degrees with a view of Lake Burley Griffin ahead of us. There is a stand of tall bare poplars on the far bank and cows graze there in the afternoon. Fairy wrens, the males with their brilliant blue tails, and the females in dowdy brown come & visit us and we had a pair of black swans by the lake bank showing off their 3 baby cygnets proudly, as fond parents do, and moving on to further shores. There is very well fed magpie which strutts up and down the adjacent wall.

Last night was better for Peter with more sleep and his break thru pain managed, and I had the most beautiful sleep in my comfy bed snuggled under the doona. A better night for us both, and this is the ideal arrangement for just now.

One more sleep and tomorrow I meet Jeremy & Finn's flight!! Peter will have a pass and we will all go home, with Peter returning to CCH for the night. We will spend Sat together & Finn can check out the CHH playground. It will be home to Mel for our Special Visitors on Sat afternoon.

The good, the bad & the ugly

2010-07-07T08:02:00.000+10:00

Canberra, Australia snusher@gmail.com

Message from Lynne

The swelling in Peter's stomach, feet and ankles does not seem to have changed much, but the blotchy skin rash on one foot & a hand seems a bit less red and pronounced. Peter had a difficult night on Monday, a night nurse call out before midnight for an injection. We do not think that morphine is agreeing with Peter. He was awake at 3.00am and had 3 break thru endones by 7.00 am. He was exhausted by the morning, looking so frail and tired. The day that followed was a delight!

Such a contrast day from the previous night for Tuesday! The Palliative Care Support team had organised for us both to have a massage at home yesterday. The skilled Dinka with her portable massage table and magical hands arrived during the morning. There was a relaxing massage for us both and we have another one booked in for next week. A treat to be looked forward to!

Pall Care have arranged for a volunteer to come and spend a couple of hours with Peter on a Tuesday, and in the afternoon Patrick Shanahan came to see us. He has been a volunteer with the Pall Care support team for 6 years, and is already assisting another man living in the community. He and Peter found many areas of mutual interest and I left them chatting while I went to the Canberra Christian Life Centre for a couple of hours. I have been a volunteer there for a couple of years doing admin work on their computer system & I am training another lady to take over from me. Patrick will now come regularly on a Tuesday afternoon.

Another terrible night with Peter awake again at 3.00am and then dozing. Pain began at 4.30am and he took an Endone for break thru pain at 6.00 am and vomited at 6.20 am. Another endone at 6.35 am and he is sleeping now. We are due our regular weekly visit from Sally, the Pall care nurse today. We will ask for Peter's medication to be reviewed again. Pain continues on a nightly basis - he has had so many unbearably long difficult nights. Also the swelling & dark urine need to be addressed.

Yesterday a welcome call from our daughter, Juliet in Melbourne. Her partner leaves for overseas tomorrow & she is booking her travel to see us 16-19 July. Seeing both J's a week apart will be a joy! Our thanks for all your prayers, love & concern for us. I'm sure you quite understand when sometimes Peter is unable to speak on the phone now, he is too tired. You can be sure that all messages find there way to him, via email or phone.

Palliative Care team swing into action

2010-07-03T22:04:00.000+10:00

Message from Lynne
Over the last ten days the community branch of Palliative Care have swung into action. Peter is registered and on their books and we have already had 3 home daytime visits from the nursing team. The team provides care and ongoing support for patients at home; with a team of nurses and medical staff providing 24/7 support. Help is just a phone call away for us, which is very reassuring.

On Wednesday we saw Dr Ann Oxner at Claire Holland House (the ACT Hospice) and she wrote out scripts for additional medication and has provided a medical pain management plan. The Hospice doctors will work with our own local GP, Dr Michael Brown. Dr Brown is taking a well earned holiday just now, and we will be working with the locum who is taking his place.

The idea is that Peter takes drugs through the day time, which should mean that the pain is kept under control and the break thru pain is kept to a minimum. We have another drug to take to deal with break thru pain. Most days are fine, but Peter has had 2 consecutive very bad nights on Thursday 1 July and Friday 2nd. The break thru tablets were not working to control high pain Thursday night. We made our 1st call for a night visit and a morphine injection just before midnight, with the nurses arriving quickly and waiting to see that the pain went away. It was back again at 4.00 am. Peter was back on the break thru medication & had a nurse visit on Friday morning. Friday night was better, with evening break thru pain controlled, but back again later in the night with break thru tablets at 2.00 am, 4.00am and again at 4.30am. We have increased the doseage of one of the regular daily drugs today, and will see how tonight progresses.

The oedema that Peter had when he came home from hospital - swelling of his stomach, lower legs and feet gradually went away from his legs & feet and reduced in his stomach, but it is back again now in his stomach and feet. He has a nasty blotchy red rash all over just one foot, and a hand. Both of these we believe to be side effects of the trial drug, (they are on the list given to us). Insomnia continues (another trial drug side effect, possibly?). Peter can be occupied thru night hours reading, on the computer or watching tele - football, cricket, Wimbledon & the Tour de France starting this weekend - why, its a treat for the sports lover just now! That is fine when he is comfy & pain free, and we are hoping to work back to that status again.

On Monday it will be 6 weeks since Peter started on the trial drug. He is booked in for a scan which will show any cancer in his body. This will be conpared with the one taken before he began the trial. We will find out the result when Peter has his monthly checkup with Dr Yipp, the oncologist in a fortnight.

We are looking forward to a visit from our son, Jeremy and grandson Finn during this week for a 2 days and 1 night flying stay. Jeremy, Claire and Finn have just moved into their new home in East Bentleigh, so its wonderful that they are coming at a busy time! Claire's sister Laura, husband and young son are visiting this weekend in Melbourne.

Canberra, Australia snusher@gmail.com

Always a surprise around the corner

2010-06-24T18:12:00.000+10:00

Hi all
Well, just to top off all the different symptoms I now have bronchitis....thankfully not pneumonia. Last week even before the checkup day on Monday I was aware that I was coughing up a milky phlegm from my chest. It is disappointing that the oncology doctors did not act straight away. Instead it was the local GP Dr Brown who weaved his magic and got me in for a chest X-ray straight away at NCDI Calvary Clinic. Bronchitis confirmed so onto a 1 week course of antibiotics 250mg Clarac in a lovely lemon yellow colour. I think that will knock it on the head.
Had long chat with best friend Reg on holiday in Edinburgh and Rebecca who leaves next week for her overseas long service leave.
A new factor has been the arrival of pain in a serious way; I get it round the small of my back and also deep in the stomach. I have now started taking Endone on an as needs basis and it really seems to hit the mark. Food intake is slow and careful; I am putting down a carton of Ensure full food liquid supplement each day, but I am battling to keep on weight; saw 62kg on the bathroom scales today!!
A grand measure of my overall condition is how far & quickly I can walk; it varies quite a lot. We have just enjoyed a sublime winter day here, calm, sunny, puffy white clouds and visits to or from the wonderful neighbours & friends we have...I simply cannot resist getting out & pottering in the garden, and lit up a campfire for Greg Worthington. I must say that with the pain under control I feel slightly euphoric!!! Tomorrow we get a visit from the community palliative care team so that we are on their books ready for future developments.
Given my circumstances all thought of travel out of town has been put on hold.
Lynne is a darling and persisent caring angel, and she has to tolerate some pretty nasty mood swings on my part. I am consciously trying to help a bit more...do the dishes, sweep the floor, bring in the washing.

On impulse I bought an Apple iPod last week and have got a lot of enjoyment from it already. I am especially attracted to to use of podcasts from ABC radio; however I did download my favorite walking song by the Proclaimers...I would walk 500 miles and I would walk 500 more . That song stirs me up anyway, but with the cancer I played at full volume and let rip at the mother****** of the disease and cursed till I was blue in the face and shouted out to the world...your not going to get me. I felt really good after that!!! So, let it all hang out.
Canberra, Australia snusher@gmail.com

The Ups and Downs continue..

2010-06-20T18:58:00.000+10:00

Canberra, Australia snusher@gmail.com

Message from wife, Lynne Davis

Peter was discharged home from hospital on Thursday. He had kept food down for 2 days, and was back taking the trial drug as from breakfast on Thursday.

On Sunday evening I am pleased to note that Peter has now not vomited for 6 days in a row, which is a real breakthrough!! We noted that he was actually gaining weight again; something that hasn't happened for quite some time. We have now moved from one extreme to another, as the extra weight appears to be retained fluid. Last weekend Peter was hospitalised for extreme de-hydration and vomiting. This weekend, he is showing oedema, with swelling of his abdomen, legs, and feet which have puffed up and are now filled with fluid. Dehydration, vomiting, oedema, dry skin and insomnia can be side effects from the drug, or perhaps they would have been caused by the cancer without the drug?..it is difficult to have answers.

Peter is back into a pattern of insomnia, unable to sleep at night. Its lucky the world soccer competition is on in Sth Africa, with games live at night, as he is up in the living room and ready to enjoy them. We watched a very old Poirot movie on television at 3.00am this morning. I went back to bed afterwards - Peter at 6.00am and then he was up again at 8.30am. Peter is very tired, and has little energy, but has been enjoying doing crossword puzzles. We went for a very slow walk this morning to a nearby oval.

Tomorrow Peter will have been on the trial drug (which we believe he is getting, not the placebo) for a month. We go back to Canberra Hospital for a lengthy session when a series of tests will be done on him, and we will be asking how best to deal with the oedema and insomnia. Our best wishes to all blog followers!

A good day to report

2010-06-16T18:52:00.000+10:00

Canberra, Australia snusher@gmail.com
Message from wife, Lynne

Peter had 3 days of "nil by mouth" for food and drink, with small chips of ice & sips of water to relieve his constant dry mouth, and a drip for hydration. Yesterday Dr Thomson (who had inserted the 2 stents) carried out a gastroscopy and said the stent is not blocked.

After the surgery Peter was allowed light food and drink. From tomorrow he has been told he can order from the normal hospital menu. He has been given drugs to help him sleep at night, and now has had 2 nights running when he hasn't has to vomit and has slept. This has been wonderful, and he was looking so much improved today! I go home in the evenings and have had 3 straight nights of going to bed and sleeping through, and this has been quite wonderful for me also!

Today there has been great debate as to whether Peter should go back on the trial drug, and if so, when. The decision made is that he will go back on it after breakfast tomorrow. Dr Yipp, the Oncology specialist, doesn't think the trial drug was the cause of the weekend episode, but doesn't know what caused it. Peter will be given something which we are told will mean his mouth doesn't get so dry and dyhydrated constantly.

Thanks for all of your thoughts and support for us. I'm at the hospital each day, so the blog is a great way for keeping you informed of our journey. Peter is quite amazing and takes each day as it comes, and generally day times are good for him. He has been walking round the ward; and there is a sunny courtyard close by where we can go to get a daily dose of vitamin D. The medical staff are trying to improve the nights.
We will have the Palliative Care nurses to support us when Peter is discharged.

Cancer at the junction

2010-06-14T07:44:00.000+10:00

Cancer at the junction

General circumstances:Weight: kgNausea/vomiting:Bowel movements:Energy level[/10]:Exercise:Pain[/10]:

Peter in hospital

Peter and I were delighted to have sister Rebecca arrive from Sydney to stay with us for this long weekend in Canberra on Saturday 12 June. Peter enjoyed at afternoon seista and woke to vomit, and again a few hours later. A terrible night followed with Peter sick again 4 times, and now just red brown fluids with the food component disposed of earlier. As he has been for days he was severely dehydrated, with glasses of water scattered around and emptied regularly.

We packed a small bag of belongings and Sunday morning presented at the Emergency Dept at Canberra Hospital, where Peter was very promptly moved to a bed and examined. During the day a blood sample was taken, and he was put on a drip to restore some hydration, which stayed on. An xray was taken of his chest area. Peter was able to ease the dryness of his mouth with ice blocks, and the need for these dropped as the drip restored hydration. Peter is on nil by mouth for now, and off the trial drug while the staff work out just what is happening. Peter's colour is good, and initial blood level was 99, (which is a reasonable level). It appears that a mixture of some blood and a great deal of body fluid has been coming back.

During the afternoon Peter was moved out of the busy comings and goings of the acute care area and into a four bed ward, and a 2nd blood test was taken at 4.00pm , to compare with the first one. (Results will be back today). The gastro specialist and oncologist on duty will see Peter tomorrow (holiday Monday). The staff hope to keep him comfy and to stabilise him. As his gastro cancer is advanced, with a stent in place, they would like his own specialists, Dr Desmond Yipp (Oncology) and Dr Thomson (Gastro) to see him on Tuesday to decide the appropriate pathway. This will probably involve a scope to see what is happening in the stomach area. The xray showed fluid there. Peter had no feeling of build up and discomfort in the stomach area yesterday, and no need to vomit to relieve bloating. (Of course, he was nil by mouth, and had previously been sick 6 times, so that must have done a thorough emptying of his system). Peter has had three bad nights...the nights are long and difficult for him and had no sleep during the day yesterday.

I left him settled in the ward, and came home to a chicken curry and rice dinner with Rebecca. We will both visit Peter this morning, and then Rebecca will head back to Sydney and I will stay for the day. Just 3 more weeks and Becca will be off with her round the world ticket for 3 months long service leave from her busy and demanding teaching job. We have enjoyed having her company through a difficult weekend.

two week consultation with Dr Yip 07 June 2010

2010-06-08T14:57:00.000+10:00

Actually, Dr Yip was away so a bright young Dr Adam Cooper saw me. The usual business of me reciting my symptoms & side effects; dry mouth, vomiting, fatigue & lower back ache the usual culprits. I fessed up to just having one tablet [5mg] over the weekend, but readily agreed to fall back into line. Things do not move too quickly in the trial and it can take up to 6 weeks before the drug begins to take effect.
Nurse Kelly took a routine bloodsample and we were on our way.

Canberra, Australia snusher@gmail.com

End of week two of drug trial

2010-06-05T21:26:00.000+10:00

Well folks, this first two weeks is drawing to a close. Things have been very rugged over the last few days; a cycle of eating, bloating and vomiting; accompanied by towering fatigue. Still, I am developing a pattern of an afternoon bath then sleep for a few hours which is just a wonderful time. Often I will then read in bed for an hour or so; reading a great book now "Journey to the ants" by Bert Holldobler and Edward Wilson, Belknap Press 1994 ISBN 0674485254. It is a laymans description of the world of ants.
As tiredness has moved in I find I need to call on Lynne for even the most menial of errands, because I spend too long thinking about doing something before I can actually do it. Managed to walk up to the shops with Lynne this morning, but then accepted a lift from a neighbour back home...what wonderful people we have as friends & neighbours!!!
At last some pictures...rather confronting, but that is the nature of my condition.
Not much meat on this boiler. Fit only for the knackery. 64 kg does not get you much on my frame. As a nice modesty screen I am holding the box in which the trial drug tablets came.

Finn eat your heart out!! A bubble bath complete with rubber duck...who could ask for more.

Canberra, Australia snusher@gmail.com

one week into trial

2010-05-31T15:37:00.000+10:00

Everything contiues on a very even keel. I am taking the trial tablets each day. No dramatic side effects; I really cannot say if I have the drug or placebo. If anything there is a slight upward trend in my general constitution. Take the morning walks religiously every morning [9km yesterday around the Wallaroo Road in the rain!!] Reg Sewrey left yesterday for two months in UK and I will miss his company. Sub consciuosly I am letting myself sign up for 6 month [findmypast family history] or even 12 month subscriptions [St George term deposit]...I feel too good to think that I will drop off the perch any time soon. [ Must check that saying out...I thought that bird skeleton & leg muscles were such that even if asleep or presumably dead they end up with a lock grip on the branch and so cannot drop off!!]

So for now it is just keep on trialling away!! Everyone keep a grip on their perch!!
Canberra, Australia snusher@gmail.com

Everolimus clinical trial begins

2010-05-25T05:38:00.000+10:00

So, the dice have rolled, I have been accepted for the Everolimus clinical trial and have yesterday taken the first two tablets. 2/3 chance of getting the hard drug as opposed to the placebo. They are inocuous looking white pills 5mg each...and are not marked placebo or drug!!! I have heard that in the US where the drug is in use they are $300 a pop!
So far I have had no real reaction to taking the pills...certainly nothing unpleasant. It can only be if I have strong adverse side effects that I might be able to guess that I have the drug rather than the placebo...if I have no bad side effects then I could have either.
Certainly the past two weeks have been dreadfully unpleasant with a daily cycle of stomach bloating, ache & discomfort, only relieved by vomiting. It feels as though it is a purely mechanical problem. The stomach fills and then at a critical point it triggers a reaction to vomit, empty and clear out.
As of yesterday I finally 'bit the bullet' ..excuse the pun, and have given up 60 years of eating habits to switch to blended foods only. As far as possible the only foods I am taking infrom now on will be liquid or have gone through the blender or will be naturally squashy soft. No more biting & chewing for me!!! Lots of soups, shakes, canned beans & spaghetti, pureed fruit, chocolate, ice cream, yoghurt, porridge and all at the highest calorie level possible.
See Dr Andrew Tomson today to talk about my stent.

Canberra, Australia snusher@gmail.com

Stented beans run riot in truncated gut

2010-05-15T17:33:00.000+10:00

Gretings all;
It has certainly been an eventful few days since the last post. On Wednesday I went back to The Canberra Hospital for blood/urine samples & ECG and met oncology clinical trial nurse Kelly Chase for the first time. Had a late brunch [spring rolls & wonton soup!!] at Woden, having fasted since midnight. Thereafter I quickly developed a painful bloating in the stomach which built up right into the night and was only relieved through vomiting.
Thursday was a better day, though lately I cannot even use days as a suitable measurement. It is more like an hourly basis, and I can go from high to low in course a single day!!
Picked up script for a supply of panadeine forte. Had booked to see GP Dr Michael Brown, but felt better so cancelled appointment. Had visit from neice Vanessa which was a big cheer up.
Also pleased to report the use of baked beans as a biological marker!! Beans do have a renowned propensity to generate flatulence so it was with considerable interest that I counted about 6 hours between eating half a can of the fabled legumes and then producing a good supply of 'gases'...it is wonderful that some foods are getting through to my intestines that quickly.
Yesterday I went to Deakin for a preliminary 'benchmark' CT scan to set a reference point for readings during the drug trial. I reaaly got quite teary and emotional while being moved back and forth like a giant salami being sliced by the Xrays of the scanner...just dwelling on what a journey it has been these past 2 years or so. Last night I was plagued by a painful ache more in the lower back than the stomach. Used the panadeine forte to good effect, it quickly relieved the pain and let me get some sleep. Woke in the small hours; used heated wheat bag to get some relief until I got up at 0600.. a good coffee really works wonders. Enjoyed a 1 hour walk before breakfast. So, a pattern is developing and well, it is tolerable at this moment and life seems good. Hope to watch FA Cup Final on TV tonight!!!
On Monday 24 May I will see Dr Yip again to see if I have been accepted for the Everolimus drug trial; if I am, then I will start popping two pills a day.

Canberra, Australia snusher@gmail.com

TV documentary reveals the inner structure of the digestive system

2010-05-12T05:18:00.000+10:00

Hello readers, as you may know I subscibe to the ACOR EC group discussion list. This is a post I made to the group just a short while ago.
Post to ACOR EC list
Greetings all; we are all struggling with disease in our digestive system. This ACOR [Association of Online Cancer Resources] group focuses on the esophagus and stomach, which we know is just part of the 7 metre long tube from our mouth to our anus. Many of us would have seen drawings and diagrams supplied by doctors, specialists and drug companies. We also would have seen scans and medical images.

None of these can compare with the sheer drama and wonder of seeing a human body disected, opened up, laid out and explained. This is exactly what has just been aired on SBS TV here in Australia as part of the series 'Anatomy for beginners'

The preserved body of a woman who donated her mortal remains to the advancement of medical knowledge was duly cut open from mouth to anus in front of a live audience during the course of the one hour program. Expert commentary was given by the anatomist and a doctor.

The entire episode is currently on the SBS TV website at http://tinyurl.com/288po49. I commend it for your viewing.The oesophagus gets a goood mention!!!

Canberra, Australia snusher@gmail.com

Let the games begin_two out of three aint bad

2010-05-10T20:35:00.001+10:00

Greetings all.
Today I signed up to join in the clinical trials of Everolimus for treatment of advanced gastric cancer. Everolimus is the active ingredient of the drug Afinitor. If I pass muster I will be recruited as a trial patient and start getting the drug [2/3 chance] or placebo[1/3 chance] very shortly. Quite a few preliminary tests need to be done to check that I am a suitable candidate and to measure where I am at to start with...more CT scans, blood samples, cardiograms, weight checks and questionnaires. Thereafter it will be fortnightly then monthly visits to the clinic at The Canberra Hospital for as long as the trial or I last. If the drug does me good then I will stay on it indefinitely.
Overall at home I have my bad stomach and good bowel moments...it sometimes feels as though they are in some kind of competition, one balances out the other. As usual I can eat anything...easy to eat too much, but it is what happens next that is the issue. Some food & nutrition must be getting through and I can see the first signs of clawing back some of the lost weight, though I am still rather a stick figure. On the other hand I am still plagued by fairly regular and quite distressing bouts of vomiting at night.
Despite these, I am feeling better and did a one hour walk this morning in the first of the Canberra frosts followed by magnificent autumn day. Last week Lynne ticked off the calendar, and after a run of four days free from vomiting she booked us to fly to Melbourne for three days over the weekend [Thursday to Sunday]. Guess what, I then vomited the night before we were due to fly and I was very off colour [ie ghostly pale white!!!] for the actual trip down. Nearly got bumped off the flight with Qantas.
Anyhow, we survived unscathed and entered into a dream world in Melbourne. Stayed in serviced apartments in St Kilda. Caught up with Jeremy, Claire & Finn and also Juliet and her current man Matt. Went to Finn's first birthday party in Jacoby Reserve, St Kilda, then to an auction where Jeremy was successful bidder on a delightful new home in Bentleigh East. We all celebrated with champagne with the vendor. Celebrated Mothers Day on Sunday. I had a test drive in Jeremy's new Hyundai i30 sports hatch.
Comments have been disabled on this blog. Just send me an email if there is anything to say.
Lynne firstly, then friends, family and neighbours have all extended their hearts & hands to help me, for which they have my undying [well I hope so] gratitude & and appreciation.
To be continued.

Canberra, Australia
snusher@gmail.com

Test post for Google Alerts

2010-05-09T21:47:00.000+10:00

Test post

Canberra, Australia snusher@gmail.com

On the crest of a wave!

2010-05-05T21:44:00.000+10:00

Entry from Lynne

After a totally forgetable week last week, (when Peter was vomiting almost every day), we have just had 4 days in a row where food has gone down and stayed down. Peter is looking and feeling so much better with this reversal of fortune! It must have been the family support having his sisters and neice and her 2 boys around that has helped. We have been very careful with the food he has been eating also.

We have booked flights to Melbourne tomorrow and will spend four days there. Our grandson Finn has a 1st birthday party on Saturday, to be celebrated with friends and family. Our daughter, Juliet, completed a half ironman (woman) event in Busselton in W.Aust last weekend. We will be able to congratulate her in person, and meet Matt, the new man in her life for the past few months.

Canberra, Australia snusher@gmail.com

Hard to stomach

2010-05-02T17:10:00.000+10:00

The fool foldeth his hands together, and eateth his own flesh. Eccl 4 v5
So, the last few days have been very grim.Two nights in a row I have spewed up from the depths of my stomach seemingly all the food, drink & more eaten during the day. There had been no bowel movements to indicate that food is in any way getting through the pyloric stent and into the intestine.....until about 15 minutes ago when at last I produced a nice crop of marble sized nuggets. Really, I am still in a state of uncertainty about whether this stent will work or not, but at least now I have some hope. It is really a matter of me putting food relentlessly into my mouth; the act of spewing has become rather ho-hum; its all over in a few minutes and you feel better after. Its just the build up that is painful and the sense that no nutrition is getting through.
I continue to show off my skin and bones to anyone who wants to see. Weight 65 kg. Enjoyed a wonderful visit from sister Rebecca from Sydney; she is a healing force. She makes a mean leek & potato soup!!!Sister Gina also was here and with us all for a birthday dinner for our neice Vanessa.
Today enjoyed a delightful trip into the country for the Collector pumpkin festival with Rebecca, Lynne & Reg Sewrey. Beautiful day, wonderful crowd. My back was sore, so I sat at a table and just was entertained by the passing parade and conversation.

Dr Brown next Wednesday and appointment with Dr Yip on Monday 10 May to see if I might participate in trials of new drug. Lynne is proving a tower of love and support for me in this difficult time...she has my undying appreciation and love back in return.

Canberra, Australia snusher@gmail.com

There is a time for everything under heaven

2010-04-27T18:11:00.001+10:00

On Sunday 25 April I was discharged from the National Capital Private Hospital after three nights. I was happy to go & Dr Thomson was happy to release me. At that stage I had gone over two days of comfortable eating [soft foods], no nausea or vomiting and able to open my bowels... does not get much better than that! The turnaround from a week before was quite remarkable. The previous three weeks have been a nightmare of eating, vomiting, starving and being empty in the guts.
Since then, back home, something of a shadow has fallen again over my horizon. I have experienced bloating; though so far no nausea or vomiting. It is just remarkable that one turn either way and my mood can swing from optimism to pessimism. Last night the ache in my stomach was really insistent; took two Panadol and got through the night. I am still uncertain if the stent has blocked up or is working again.

Booked to see GP Dr Brown tomorrow and medical oncologist Dr Yip soon. Of course, I do not know how much longer I have got left. What I am finding is that I am enjoying the basic simple activities of life as much as I can. Raking up leaves for example....There is a time for everything under heaven...a time to be born & a time to die...a time to rake leaves and to scatter them.

Canberra, Australia snusher@gmail.com

Smoother Sailing

2010-04-24T09:50:00.002+10:00

Message from Lynne

Good news to report today! Peter has been in the National Capital Private Hospital since Thursday afternoon. He has started on food very gradually, and has now had 2 days when he has not vomited and brought food back. After 3 weeks of vomiting almost every single day, this is an encouraging sign. He is moving into soft foods and breakfast this morning was porridge and scrambed eggs with his coffee. Dr Thomson has been checking on progress twice a day. If this continues, Peter may be able to be discharged later on in the long weekend.

Thanks for all your support! Sister Rebecca from Sydney plans to come and spent next weekend with us. We may even have a new bathroom to use and admire by then. The wall tiles are being grouted by the tiler today, plumber Tues, plasterer Wed, builder for fittings Thurs, if all goes to plan.

Peter is looking thin, but goes for walks around the 3rd level, and we went across to Canberra Hospital across the road yesterday for a coffee. Walking and running have always been such a big part of Peter's life - the Canberra Times Fun Run most years, until the past year, Friday runs with the Customs joggers, Fun Runs, a couple of marathons, and walking all the roads and trails of Canberra that he so loves.

Uncharted waters

2010-04-22T21:38:00.002+10:00

Message from wife Lynne

Yesterday afternoon 21 April Peter went to Calvary Private Hospital and Dr Thomson inserted a 2nd stent inside the original one he had inserted a week ago, in an effect to transfer food from the stomach into the duodenom. When he came round after the anaesthetic, Dr Thomson saw him, and advised light food and he had a tub of yogurt and a small orange juice before we came home at 7.00 pm. (Peter had had no food after a light breakfast). When we came home he had a small bowl of condensed chicken soup and a few mouthfuls of a strawberry and milk smoothie put thru the blender. At 8.30 everything he had consumed, (and maybe older food as well), came back. Tossing and wakeful he was vomitting again after midnight, this time dark red blood.
We drove to the Emergency Dept about 1.00 am, where there were just a few people waiting to be seen and waited an hour to be seen
this time by a pretty young lady Dr Thompson, (her Thompson has p in it, the surgeon's doesn't). Peter was moved into a bed, blood taken, blood pressure, temp, etc all checked out.
His surgeon Dr Thomson was notified about Peter's condition and he asked that Peter have nil by mouth today, and be moved to the Canberra Capital Private Hospital, where he would see Peter later today. At 4.30 today Peter was taken by ambulance and admitted to CCPH. Dr Thomson said that he wants to give the 2nd stent every opportunity to work and Peter must go back to fluids, and small amounts of light foods and be monitored as to how his system copes. This is just what Peter wanted himself. He walked 3 times around the 3rd floor after a very light meal of a few mouthfuls of mashed potato in his soup, apple juice and a few mouthfuls of tea. He has a good spacious room to himself at the end of a passage, with noone in the room next door. I left him feeling brighter and both of us hoping that he will have a much better night tonight. Many thanks for the emails support from family and friends, which we both appreciate so.
Meanwhile, bathroom renovations continue at our place and the new tiles look wonderful. The tilers will be grouting the walls tomorrow and their part will be finished. Next week the builder will be putting in the fittings.
Our grandson, Finn, took his first steps last week, just before the birthday he shares with our neice Vanessa on 2 May! We could see how very close he was when he visited recently, walking around the coffee table and pulling himself up on the furniture!

Stent not working

2010-04-20T14:30:00.000+10:00

'and after he [Saul] had eaten, his strength came back' Acts Ch 9, v19

Saul went three days without food or water. Fundamentally I have not taken any nourishment in for three weeks. I have lost 10kg and my ribs are showing and , for the first time in two years I can see the tubing running in my chest to the portacath. Yesterday a barium meal and X-ray at Calvary Medical Imaging showed a blocked stent. This was the picture after a 20 minute rest. Barely a trickle of the white barium meal is running through the stent.

Today we saw Dr Thomson for consultation. He even produced an example of the fully expanded stent which was remarkably similar to garden hosing. An appointment is scheduled for tomorow at Calvary where he will attempt to either unblock the first stent or put in a new [second] stent. Given the wide aperture of the stent I am quite surprised that anything could actually block it. He thinks that perhaps he put it too close to the cancer and that has somehow pressed against the stent to block it.

I felt really bad last night. Vomitted again...everything eaten & drunk in the course of the day came up. Starting to feel weak , hungry & thirsty.

It is a hard road we follow, but follow it we must to the end.

Canberra, Australia

snusher@gmail.com

Hoping for a stint with the stent

2010-04-15T14:16:00.000+10:00

OK; two days ago I had never heard of a pyloric stent [search Google for "pyloric stenting"]. Now my life depends on one working successfully. At 11h00 on Tuesday 14 April I reported for duty at the Gastroenterology Unit at The Canberra Hospital. Jeremy flew up on a breakfast flight from Melbourne, and Juliet arrived at lunchtime, so the whole family was around for the show. Admitted as a private patient, which really ensured that I would get the procedure done today. Went through the usual paper work, then got changed ready for action. Thereafter followed an unexpected delay of several hours because of a sneaky coffee I had drunk at 10h30...strictly off limits, so they gave me the waiting time to empty the stomach. The area I waited in was an amazing marshalling yard for patients coming and going between wards, including a baby boy just 10 weeks old right next to me , all wired up with his drips...and his Mum to comfort him!! I was not bored at all!!
Late afternoon it was my turn; Dr Thompson explained the principles of what he was about to do and said the he had good results with it to date. The greatest uncertainty was whether he could get the stent through my pyloric region. I got pushed around a fair bit as the anaesthetic was applied and a breathing tube pushed into my lungs...my mouth & lips are still sore.
Came round in Recovery Ward and then transferred to NCPH two bed ward [I was only occupant]. News was that stent had ben successfully deployed...a prerequisite for it to work properly!!! Had a light dinner, then a hearty breakfast next day before I was discharged to go home.Went out at lunchtime for a meal at George Harcourt Inn. All proved too much food and stomach aches were only relieved by vomitting up all food eaten in past 24 hours.
Considerable concern then that the stenting had not worked. However, this morning sitting on the throne I produced a fine specimen and if another arrives I will at last believe that food is going through into my intestines. Understandably, with the active ferment of the human imagination, my mood has swung wildly from imminent doom to a few months grace.
Right now I feel pretty good and still waiting for new 'evidence ' that my bowels are working.
So folks...to be continues [I hope]
Canberra, Australia
snusher@gmail.com

Dr Ashton says it like it is.

2010-04-15T13:49:00.000+10:00

Lynne & I saw Dr Chris Ashton on Monday 12 April. He said my predicament was precarious; if a breakthrough could not be achieved to get food & therefore nutrition into my intestines then I might count on just weeks to live. If a pyloric stent can be inserted (proposed for Tuesday 13 April) and it successfully functions then I might count on months. The cancer is aggressive and growing; there is no going back.
The news was hard to stomach [excuse the pun!!!] but hey, thats the way the cookie crumbles. So there it was, a real smack in the face to blow away any airy fairy ideas of things drifting on idefinitely. Our attention now turns to the pyloric stenting scheduled for tomorrow. I thank Dr Ashton for his sympathetic treatment of my complaint.

Canberra, Australia
snusher@gmail.com

Gastroscopy.... though a stomach darkly

2010-04-08T14:19:00.000+10:00

Yesterday I attended the Public Endoscopy Unit in the Marian Building at Calvary Hospital. Admitted as a public patient so as to more quickly get seen by Dr Ashton. At least this time Dr Ashton could see enough to pronounce that the cancer was back. His rough sketch and scribbled notes showed the picture. Despite 16 hours of no food or drink there was still a food residue at the bottom [pyloric] end of the stomach. The cancer seems to be blocking the exit from the stomach, which explains why I am not getting much nutrition. Lost about 4kg over the past two weeks.
Meeting with specialists scheduled for next Monday to discuss options. I am feeling empty and thin. Not particularly hungry, but with a full stomach. Waiting for something to either come up or go through my digestive system. I am under no illusions about the severity of my complaint!!

Canberra, Australia
snusher@gmail.com

Of coffee grounds, dark chocolate and claret

2010-04-07T09:35:00.002+10:00

Hey ho, lets have a colour theme for this post. First you vomit rusty brown blood, then you poo dark chocolate stools and finally you need three units of brilliant red blood to bring you back from the edge. This post is a retrospective one [not from beyond the grave!!!], summarizing events of the last 10 days or so. If we start from Sunday 28 March I can count things as 'normal' when I did my morning 9km walk on the Wallaroo Road. Went out for lunch with friends, ate well and consumed a few alcoholic beverages. Took an afternoon lay down to work off the meal...and really did not get up until 16 hours later!!! Right through the evening and night I was in a half asleep mode and quite weary. Got up on Monday rather chastened, but prepared to launch into another day. Had a substantial cooked lunch, but then felt bloated with an ache in the pit of the stomach, as though something was stuck. That feeling built up through a very uncomfortable night, with signs of reflux building. Got up early on Tuesday 30 March, took a glass of water and that was the trigger for a vomit of 'coffee grounds'; tried a very soft breakfast and bingo, same thing. Tried a soft lunch [noodles] and again I just had to vomit to clear my stomach. Rusty red brown is a good colour description!! Also my stools had become noticably dark over the last two days.
Off to see Dr Brown in the afternoon who straight away sent me to Calvary Hospital where I again worked my way quicky through the Emergency Ward to a bed in the Private Hospital. Dr Ashton was my consulting physician through this stay. My haemoglobin count was down near 75, a sure sign of anaemia and bleeding [normal is above 130 for adult male]. I was put on a Nil By Mouth diet and had a transfusion of three units of blood. Next day [Wednesday 31 March] I had a non barium gastrograph which I was told showed free flow of liquids into the stomach. No reference to liquids flowing out!!!
Next day [Thursday 01 April] I was given a gastroscopy by Dr Ashton, but that proved inconclusive because my stomach was still filled with too much food scraps. I was then put on a 'clear fluids' diet [broth, jelly & fruit juice] in an attempt to clean my system out.
I then proceeded to poo copious quantities of what looked like chocolate ice cream topping....[anyone for sprinkles?]..only to be told later that this excessive excretion of watery stools was often a consequence of the non barium fluid used in the gastrograph.
Thereafter it was really a couple of empty days in the hospital on the hope that Dr Ashton could do another gastroscopy. But that just did not happen and I was sent home on Easter Saturday.

Canberra, Australia
snusher@gmail.com

Flat spot

2010-03-29T11:14:00.000+11:00

I record a very unusual turn of events yesterday 28 March 2010. I did my early morning Wallaroo walk as usual. Out to lunch with neighbours. A generous meal, but did not overindulge. One beer & glass of bubbly while out. Alcoholic cider [375ml] on return. Felt drowsy, lay down in front of TV and really did not get up until next morning...about 16 hours of sleep or rest. Felt heavy & drowsy when I woke, some reverbs in head, ache in small of back, stools dark chocolate brown.
Gradually feeling better as the day progressed but rather bewildered by this episode!!
Canberra, Australia
snusher@gmail.com

Bump in the road.

2010-03-25T16:18:00.001+11:00

Last Saturday 20 March 2010 I felt quite off colour; lethargic, slightly feverish and with reverberations rolling around in my head. Also had a 'turn' which sent my heart rate racing away. I was prepared to tough it out until at least Monday, but Lyndall and son Jeremy both persuaded me to head along to the Emergency Dept at Calvary Hospital.
Well I received royal treatment!! No delays, quick triage then a doctor visit. Had an X-ray done of the chest and CT of the head. Blood samples taken. temperature elevated. Put me on panadol & antibiotics. Overnight in ED bed sharing ward with drunks & drug users among others. Watching monitor was amazing, because at times my heart was showing atrial fibrillation and HB racing from a resting 70 to 140 bpm in the space of a minute!!!
Moved to Calvary Private Hospital [6th floor] on Sunday morning, under care of Dr Riddell. Had CT done of chest. Felt better quickly, temp back to normal. High infection markers [120] confirmed some sort of infection; this could explain lethargy and reverberations. Kept in for 'observation' until Wednesday. Markers falling. Blood sample taken from my port. Also had CT of abdomen; all body covered now!!!
Quite unable to pin anything as cause of reverbs. They could just be 'bellringers' to indicate infection.
Had a nice headache one night but a powdered Panadol helped settle that. Appetite & eating OK.
Results from CT remarked the shadow in liver area; will talk to Dr Pranavan next month to see if there is cause for concern. At least now I have been in hospital under observation to try and sort out reverbs, headaches. May now try alternative medicine. Will give away alcohol for a few months to see if that helps.

Came home on Wednesday pm and walked straight into a dose of reflux that night. Not severe, but very unpleasant. Today having a quiet day.

Normal resting Blood Pressure is 110/70
Pulse 60-70 bpm

Canberra, Australia
snusher@gmail.com

Gastro-oesophageal cancer patient featured on RPA

2010-03-25T15:55:00.003+11:00

Over three weekly episodes of the TV medical reality show RPA http://www.nine.com.au/rpa/episodes/ aired on 10, 17 and 24 March 2010, cancer patient John Hogan was followed through consultation, Ivor Lewis surgery, recovery, complications and finally discharge. That amounts to 30 minutes of TV coverage which can be watched as video via the internet.
Each episode airs for 1 hour; there are 20 minutes of adverts; there are four patient medical stories being followed simultaneously in each episode. That makes about 10 minutes of video footage per patient per episode.
It is a medical reality program; the quality of the production is superb. It combines the medical aspects with the human aspects involving patient, family, friends, medical staff. The crises & setbacks are covered as well as the successes. Totally recommended.

Canberra, Australia
snusher@gmail.com

Watching brief

2009-12-21T17:00:00.000+11:00

The visit to Dr Yip last week ticked all the right boxes and set me up for a follow on CT scan in about March next year. His view was that if there are no adverse symptoms there is no need to do any further tests..so no gastroscopy. My blood tests showed a marginally low red blood cell count, so that a boost to my iron intake is recommended. Several of the very unpleasant symptoms I complained of last week have quickly disappeared, in particular the head reverberations. The dry mouth seems as persistent as ever. Energy levels are OK, and I seem to be in a holding pattern right now which is quite tolerable.
So, we blaze on, my 64th birthday has ticked over, 2010 looms and February will mark the 2nd anniversary of my surgery.
I note that Mary McKillop is due to be elevated to sainthood with the validation of one of her miracles being the cure of a patient with terminal cancer. Cardinal Pell of Sydney assures us that prayer can indeed cure cancer.
If all goes well this may be the last post for three months!!!

A happy & healthy New Year to all.

Canberra, Australia
snusher@gmail.com

Getting what you hope for.

2009-12-11T11:22:00.001+11:00

Put simply, the results of the CT scan done on Tuesday last were as good as could be hoped for. The report prepared by Dr Anusha Naidoo on 08 DEC 09 [folio 2170162-1] is two pages of medical terminology which says fundamentally that no abnormality can be reported. No cancer can be detected.
Lynne & I will discuss the ramifications of the reoprt with Dr Yip, medical oncologist, next week. I will be asking for a gastroscopy as soon as possible to confirm the diagnosis.
It is paradoxical that this good report comes at a time when I am generally feeling rather tired and unwell. Reverberations in the head, headache, backache, stomach ache, dry mouth; all enough to weigh like a millstone around my neck. I will be seeing my GP Dr Brown on Tuesday and will raise these issues.

Canberra, Australia
snusher@gmail.com

Update on my situation Dec 2009

2009-12-08T16:23:00.004+11:00

Greetings to all friends, family & followers. This, you will see, is the first post for nearly two months. There has not been much to report, but very soon now there will be an important update. Today I had another CT scan of the chest & abdomen at the National Capital Diagnostic Imaging, Deakin. Films & report will be available Friday and next week on my 64th birthday I will visit my oncologist specialist Dr Desmond Yip for a discussion.
My mind is completely in neutral. Of course, you cannot escape from the old bromide that you hope for the best and are prepared for the worst. Up until about a week ago I would have said that I was cruising along in comfort mode. Our NZ North Island holiday was a great success http://picasaweb.google.com/snusher/Aeheinomouwe# and Lynne & I have settled quickly back into Canberra routine.
A week ago I went on my usual country walk with Reg Sewrey over near Gundaroo. A hot, dry & dusty walk but not too long. The next day I noticed a dull ache in my left front shoulder area which is still with me today. More alarming is the recurrence of 'reverberations' in my head, which are really quite unsettling. I also wake again with a dull headache, dried out mouth and aches through to the stomach; I have been sleeping very poorly and feeling tired. The Canberra hot weather does not help. So who knows!!?? Is it just an older body showing aches & pains or something more sinister. That is definitely one of the down sides of having cancer. I am not loosing weight, but I feel thinner and more gaunt, no matter how much beer I drink or apple turnovers I consume

Post you later.

Canberra, Australia
snusher@gmail.com

In limbo

2009-10-15T21:32:00.001+11:00

Hello all; my due & proper ration of 45Gy of radiation is now working its magic. I have felt little in the way of positive or negative side effects so far. The outcome of this treatment cannot be assessed until a new CT scan is done in early December. Until then I am in limbo. I have seen both the medical oncologist and radiation oncologist in the last few weeks. They are pleased with my easy toleration of radiation and my general condition...so am I.
Today Lynne & I attended the memorial service for Peter George Garas [1949-2009] who passed away recently from complications arising from gastro-oesophageal cancer. His blog on his cancer experience proved a guide and inspiration for me. RIP Peter and our thoughts go out to his wonderful wife Leanne.
Lynne and I will be off to New Zealand North Island for a two week holiday in November. I am travelling well.

Canberra, Australia
snusher@gmail.com

Treatment finished

2009-09-19T18:51:00.001+10:00

Well folks, the five weeks course of radiation & chemotherapy is now over. My afternoons and my right pocket are now free!! No more visits to the radiation room & no more carrying around my chemo bottle. The routine of treatment has been more tiring than the physical effects. I have coped very well. No side effects. The moment of truth will come in a few months when a CT scan will reveal the results of the treatment. I feel good.
A huge thanks to my loving wife Lynne and all staff at Radiation Oncology and Medical Oncology wards at TCH.

Canberra, Australia
snusher@gmail.com

2009-09-12T16:55:00.000+10:00

Canberra, Australia
snusher@gmail.com

End of week four.

2009-09-12T16:48:00.002+10:00

Week four of my radiation treatment has finished in the same anodyne manner as the previous three. There is nothing unpleasant to report. I take that as a good sign; I do not subscribe to the theory that you have to feel rotten for the treatment to be working effectively. There is no sense of me 'battling' cancer; I feel just fine and I have really only got one week left to feel any of the nasty side effects of treatment!!

I am getting more adventurous with my beer drinking and could not resist posing for this shot; chemo in one hand and Guinness 250th limited edition stout in the other!
I am feeling a touch thin, but my weight is holding steady.
Lynne has done her usual driving and chaperone duties for the week

http://3.bp.blogspot.com/__2ve3UvXz7g/SqtF-w9GuxI/AAAAAAAABxw/tk0ERmvmBWY/s1600-h/IMG_1505.JPG

Canberra, Australia
snusher@gmail.com

Three weeks down

2009-09-04T15:58:00.000+10:00

No known issues to report. Treatment continues in a routine way. Feel a tad tired at times, but no necessary link to treatment. The regular treatment sessions at the linear accelerator are interspersed with sessions where X-ray images are captured. No feedback yet on how treatment is progressing. Will see chemotherapy doctor on Monday. On Thursday I chose to travel door to door on the buses; that is 1h 30m each way! Compare that with 30m by car, so there is really no contest. Lynne drives me over quite often.
Weight is holding; blood counts are good...they have to be otherwise treatment would be suspended.

Picture of Varian Linear Accelerator http://www.varian.com/us/oncology/radiation_oncology/clinac/

Canberra, Australia
snusher@gmail.com

Two weeks down...no known issues!!

2009-08-28T20:12:00.001+10:00

Well folks, two weeks down and three to go. Nothing to report except complete harmony between radiation, chemotherapy and my body. Appetite normal, digestion normal, energy levels normal; no side reactions, no skin burning, no nausea, no hair loss.
The trips to the hospital radiation each day are a formality, a pleasant formality. Writing this post in the new blogger editing window, which feels quite seamless.

Canberra, Australia
snusher@gmail.com

First week over.

2009-08-22T12:03:00.002+10:00

Well, that's it. First 5 days of radiation now over, one week gone and four to go. No side effects, no symptoms, no discomfort. The facility and staff at radiation oncology are top notch. I quite look forward to my visits for some friendly chit chat. Saw a dietician and also review doctor yesterday, all rather routine. The review was looking at any side effects & how I was tolerating treatment. Since there was nothing to report the review was over in a microsecond!!

Canberra, Australia
snusher@gmail.com

Chemo hooked up so drugs & radiation are working together.

2009-08-19T17:39:00.003+10:00

Started the day off with a 2h walk with Reg Sewrey behind Hall on a magnificent late winter day.
Today was another long day at the hospital just to set things up; the actual action only lasted minutes, but getting to & from the hospital plus various delays meant it was half a day for me & Lynne.
Yesterday I checked with medical oncology where I was told that I did not need a blood test; today I got a late call to say that I did in fact need one! That meant getting to pathology at 1300, then 1h 30m before results were with the chemotherapy clinic.
Long wait there while the medication was made up. The drug 5-FU will be continuously infused from a cartridge, which this time round is the size & shape of a baby's feeding bottle with a bright pink cap!! You need big shirt pockets to carry it round in!! The cartridge will need to be changed each week.
Then downstairs to radiation oncology where dose #3 of radiation was put through me. No side effects so far, but now there is the serious combo of chemo and radiation at work. Feel very relaxed about it all so far
Met others in the waiting room who were full of praise for radiation, which they said had cured them.

Canberra, Australia
snusher@gmail.com

Let the radiation games begin!!

2009-08-17T16:23:00.005+10:00

Today Lynne and I went across to the Radiation Oncology unit at The Canberra Hospital for a 1000 appointment. Free all day parking was readily available at that time of the morning but had gone by the time we came out mid afternoon.
There was a considerable delay as we needed to ascertain if complementary chemotherapy was to be administered. Once that was sorted out in the affirmative, I finally got my dose of about 2Gy of radiation into the target area. The full course will be 45Gy over about 25 sessions (about 5 weeks).
I will go to the chemotherapy clinic on Wednesday to get set up for 5-FU chemotherapy, which will run for the duration of the radiation. I am of course familiar with that drug from my chemotherapy last year.
All staff and nurses at the clinic were caring, helpful and sympathetic. After checking in at reception, patient and minder can go through to the work area. The patient then moves along to a change area to take off clothes and put on gowns as necessary. Although I was there for several hours because of all the sorting out to do, I could see that most patients were in and out in about 20 minutes. The enforced delay was not at all unpleasant. I read my current book and caught up with the small talk in the change room, with patients often noting how many sessions were left; all were looking forward to the end of treatment, but all seemed in good spirits. Women outnumbered men about 5 to 1. Lynne was able to catch up with her diary.
There are four linear accelerator [linac] machines in the purpose built bunker; once in the radiation room it is just a question of lying back on the hard bed and keeping still while the massive machine head variously moves back and forth to take aim at the 3D target inside my body. There is no sensation of any kind while the radiation is being delivered. Moments of emotion as I reflected on all this medical technology & expertise being lavished on me, and all the support from staff, doctors, Lynne, family & friends.
After the radiation, nurse staff again ran through the probable and possible side effects of radiation, which will inevitably be cumulative and persist after the treatment has ended.
So by mid afternoon we were on our way home, appointment tomorrow at 1450.

A bientot

Peter
Canberra, Australia
snusher@gmail.com

Radiation proposed & accepted.

2009-08-04T10:10:00.005+10:00

Yesterday Lynne & I visited the radiation oncology unit at The Canberra Hospital for an appointment with Dr H. Elsaleh. He reviewed my case notes and has proposed a course of radiation. What exactly the scope and outcome of this radiation treatment will be depends on the next CT scan that they will do today. My case was unusual and complicated, but he suggested that radiation offered the best hope of slowing the cancer and even perhaps curing it.
Ideally he would want to give me the full dose of 5 or 6 weeks radiation (5 sessions a week) along with continuous infusion of 5FU chemotherapy.
That could be timed to start when we return from Melbourne in mid August. So, this is a positive development. I was quite prepared to be told that radiation offered no prospects. Instead this is a course of treatment that might turn the tide.
Our timing was brilliant, because we were able to call in and see Peter Garas and his wife Leanne at the National Capital Private Hospital. He is in intensive care, and will move to the hospice today. Both he & Leanne were in better shape than I imagined.

Canberra, Australia
snusher@gmail.com

"From whence have you come?"

2009-07-30T15:22:00.007+10:00

"From going to and fro on the earth, and from walking up and down on it." Job: Ch2 v2
Reg Sewrey & I prior to our departure for the Cotter, where we went 'to & fro' and walked up & down.

So, on a cold, clear winter Wednesday, Reg & I again enjoyed a walk in the hills, this time behind the Cotter Dam, where there are plans to increase its capacity from 4GL to 20GL. As sequel to the 2003 bushfires and now the development plans, the country around the dam catchment is scarred and ravaged....but in line for a radical makeover!!
We encountered many tracks that have been bulldozed, ripped and planted with new seedlings. Others were stacked with massive felled burnt tree trunks and ramparts of earth and rocks a metre high. Our circuit was at least a 15km round trip from the Cotter Reserve. Maps & satellite images were OK, but we did need GPS to get through some tricky spots.

The 'highlight' of our walk was the fording of the ice cold Cotter River over slippery rocks in our bare feet near Brack's Hole. My Arab headscarf 'keffiyah' was then unceremoniously used as a towel to dry our feet. Then later I used it with great effect to shield from the biting wind.

Reg in front of a 'going up' section of track

beside the Cotter River. The logs are mature pine trunks burnt and killed by the 2003 fires.The sign at the top of the hill said 'Walking access only' !!! Even a 50 tonne tank would have had trouble driving along it!!

Oh, I nearly forgot, on the cancer front I have an appointment scheduled with the radiation specialist on Monday @ 1530 in The Canberra Hospital.

Canberra, Australia
snusher@gmail.com

Malformed or illegal..you choose!!??

2009-07-24T19:58:00.003+10:00

Hi folks,
It seems that the way I have set up this blog to moderate comments results in Bad requests that are malformed or illegal!!! when I try to get them published. What a fascinating turn of phrase, which certainly has sinister overtones when applied to a cancer blog!! All comments so far have been friendly and inocuous, so I will try to reset this function. Maybe if I smoked pot to ease cancer symptoms I would become malformed AND illegal.
Anyway, I have thankfully got the pertinent Garpet comment up on the board, and thank you to Marg Colls & Rachel & Kevin for their comments.
My internal malformation is rather an unusual case, with cancer both in the pyloric region of the stomach and in the hepatic portal lymph nodes. In a nutshell Dr Yip oncologist said yesterday that second round chemotherapy offered little prospect of recovery or relief; surgery was deemed to be risky and problematic. The last card in the deck is radiation, which will be checked out with a specialist sometime soon. My blood count from Tuesday showed red blood cells and haemoglobin just below the normal range...not sure what that is all about. Basically, my prospects are not bright, so we will be making hay while the sun shines.
Meanwhile I feel good, relaxed and with minimal complaints. Today was perfect for a 1 hour walk in the frost before breakfast, then a 5km shuffle jog around the lake at lunchtime. On Wed I walked (4h) with neighbour Reg to the top of Mt Taylor (855m), a climb of 150m, with stunning views of Canberra. Today visited a very dear friend in her last days at the ACT Hospice; she has gone downhill very quickly. Another close friend died unexpectedly in his sleep on Wednesday...quite a week!!
While I have got the ticker to still do it, Lynne & I will be off to Melbourne very soon to spend a week near our darling first grandchild Finn. Our daughter Juliet was in Canberra for one night with work, so we caught up over dinner. Saw the Chinese movie Red Cliff with our new exotic Chinese neighbour Mai.. I won two tickets in a Canberra Times competition. A real epic.. fabulous. Thats all for now folks, it has been a big day and I will settle back to watch some Tour de France.

PSD

Canberra, Australia
snusher@gmail.com

Holloways Pills anyone?

2009-07-17T09:30:00.006+10:00

Greetings all,

Lynne & I are back in Canberra after a very successful two week motoring safari to northern NSW and Brisbane...very much in the footsteps of the one we did this time last year, and hopefully will do next year. We got to stay with friend Rick Hatcher in Evans Head and then in Brisbane for one week for Ron Archer's 90th birthday. We drove back the inland way, staying at Goondiwindi, Moree and then Orange. 2800km in total. Good weather; car & body performed OK except for a painful backache the last two nights!!

Now that we are back it is time to get down to the serious business of what to do next about my cancer recurrence. The PET scan done in Sydney confirmed the presence of a 3cm cancerous node in the hepatic portal region. Previous gastroscopy and pathology confirmed cancer in the pyloric region of the stomach.

The jury is still out on what my next course of action should be. On Thursday we go to see the oncologist Dr Desmond Yip and his expertise will of course be in the field of chemotherapy. It was rather successful in attacking my first round of cancer, so it may work again this time...perhaps with different drugs and regimes.

The surgeon, Dr Mosse, is not sure whether surgery will be of any benefit, but he is waiting to talk with his peers. Radiation is also a possibility. I am open to any suggestions.

So, I am feeling OK. Eating, digestion and energy levels are good. Indeed, some of my bad symptoms from a few months ago have mysteriously vanished, in particular the waking headaches that I was experiencing nearly every day have evaporated. Reflux has been minimal, and rather linked to too much fatty foods too late in the evening. Now I am going for the main meal of the day at lunch time. Main complaints now are a very dry mouth during the night and a tendency to cramp up in legs , hands.

While continuing my research into local history I was very impressed by the full column adverts for Holloways Pills & Ointment which appeared in the Queanbeyan Age newspaper of 1866; they were touted as a cure all for illnesses & ailments, including tumors. The special cures for the stomach were a delight to read!!! I must get some for my shelf and rectify my evil.

So, thats all for now, will post again next week.

Bye for now.

Canberra, Australia
snusher@gmail.com

A tale of two cancers

2009-06-19T16:55:00.002+10:00

Dear family & friends,
This post opens up new phase in my cancer story. With good health, no symptoms and routine follow up tests, the blog has been somewhat dormant these last 12 months. But now there has been a complete change in the outlook, and it is not too cheerful.
My last post reported the episodes of reflux, and this was followed up by gastroscopy with Dr Chris Ashton on 11 June. On Monday 15 June Lynne and I got the news from him that there is cancer at the pylorus [bottom end of the stomach]. The pictures of the cancer were not pretty. He was unable to determine how far it spreads beyond and behind the pylorus, but now the results of the CT scan take on more significance. Remember that it is just beyond the pylorus that the liver, bile and pancreas empty into the small intestine. The CT scan found a suspicious shadow in lymph glands in the region of the bile duct.
Once again we have received superb service from all the specialists; Dr Ashton arranged an appointment with surgeon Dr Charles Mosse on Wednesday 17 June. Having in front of him the results of the gastroscopy and the CT scan he said the combined results were not good; he has called for a PET scan next Monday 22 June, which will hopefully outline the extent of the cancer. He felt that more surgery 'would not do me any favours'; he said that there may be scope for further chemotherapy and /or radiation and also some corrective surgery. But reading between the lines, it seems that this could be the end of the road for me.
Well, we shall see. I feel surprisingly well right now. The regular daily headaches I got each morning have lifted, and I have been free of them for four days now. I have had no reflux for about three weeks. I have had a few bouts of severe muscle cramps in the legs.
We mentioned to Dr Mosse that we planned a trip away to Queensland for several weeks, starting next week. He said that in my circumstances it was probably just as well to head off while ever I felt capable. So, a PET scan at Liverpool Hospital will be the start of our trip away!! In Brisbane we will be staying in an apartment opposite the Wesely Hospital!!
The results of the PET scan will be faxed through to Dr Mosse, and he will then arrange a group meeting with other specialists to map out a plan of action for me. I will probably ring Mosse during the week to find out the news.
I am trying to keep all friends and family informed and this blog is a good medium for that. Well I feel rather relaxed about it all right now; the dice have rolled and I have got a bad number. Guided by the experts opinion, I will probably have some choices to make soon about how I want to handle the endgame. Lynne is right with me all the way.

Sweet dreams to you all

Peter S Davis
Canberra, Australia
snusher@gmail.com

Situation worsening

2009-05-31T09:22:00.004+10:00

Greetings to all followers
This post is not pretty reading; but its the way it is.
Over the past month or so things have changed for the worse and I have experienced several episodes of what I am calling reflux. These have occurred in the evening or at night after going to bed. I had a particularly nasty attack last night, though I feel OK now.
A vile acidic taste is tasted in the mouth and this quickly leads to nausea and vomiting. The vomit seems to be a mixture of mucus and blood rather than undigested food. Once I have thrown up my stomach seems to settle and I can get to sleep.
These episodes seem to occur after eating a dinner at about 1900, and are associated with perhaps too much food or too rich & spicy a meal. For about a year after surgery & chemo I was able to eat as much as I wanted when I wanted with no hint of reflux. I continue to take PPI medication Somac 20mg/d. I will be modifying my eating habits and times to avoid the problem areas. At least I do not get reflux every night!!
I will be seeing my GP to discuss everything as soon as possible. I think another gastroscopy is called for.
Oncologist Dr Yip said he was happy with the results of my recent [29 May 09] CT scans [phone message from his secretary], though the CT specialist had flagged a suspicious dark area that could be a lymph node swelling near the liver. [I read the CT specialists report]. The CT specialist reported no abnormality in the scan of the head...nothing that might explain my ongoing headaches, so we are back to square one there.
I have yet to hear the opinion of surgeon Dr Mosse on the CT results.

My headaches continue most every morning when I wake, [I debate whether I wake with the headache or am woken by the headache] and now I am also getting reverberations in the head if I make sudden movements. I also wake with sore eyes and a dry mouth.
So I think slow and careful caution is the order of the day until we get a clearer picture of what is happening.

Canberra, Australia
snusher@gmail.com

Consultation with Dr Desmond Yip

2009-05-14T16:53:00.006+10:00

The 6-monthly consultation with Dr Yip today went OK. My blood test results were good, and his physical examination did not show up any problems. In view of my chronic pattern of 'waking headaches' Dr Y has arranged for a CT scan of the head. At the same time they will do a CT scan of the abdomen to check out the situation after surgery.
I have switched my PPI medication from Pariet 20mg/d to Somac 20mg/d.

Canberra, Australia
snusher@gmail.com

One year gastroscopy returns all clear

2009-02-24T20:38:00.003+11:00

Hello all,
Last Thursday I went across to the Brindabella Specialist Centre in Woden for a routine gastroscopy performed by Dr Chris Ashton. At least it is routine if the results come back all clear, which was the case for this visit! Dr Ashton advised no need to return for another gastroscopy until 2011.
I am generally feeling OK, but do suffer from waking headaches on a regular basis. Headaches are one listed known side effect from taking the PPI drug Pariet. I am presently on 20mg/day, but will switch to a maintenance dose of 10mg/day and see if that helps.
I am a little despondent when I read of the deteriorating condition of fellow cancer sufferer Peter Garas. I must get over to see him and Leanne some time soon.

Canberra, Australia
snusher@gmail.com

First anniversary of IL surgery

2009-02-15T11:23:00.004+11:00

To all friends, family & well wishers,

Praise be to Saint Anastamosis, on 5 February 2009 Lynne & I quietly celebrated one year since my Ivor Lewis surgery. All is going as well as I might hope. No issues, complications, side effects or recurrence. Last week I attended a NSW Cancer Council volunteer training for Cancer Connect volunteers. The two day course was held in Sydney at the Council HQ in Dowling Street with a group of 16 trainees. Brain, breast, prostate, lymphoma, stomach and bowel were all represented. Course leader was Maxine Rosenfield and the Cancer Connect coordinator is Lisa Humphries. Gary from Nambucca Heads was the one trainee with very similar cancer to mine, perhaps a bit more radical and with more ongoing side effects which he is learning to live with while still working as a full time banana grower.

Picture of group is embedded.

Once through the training, volunteers are matched up with cancer patients to provide one on one peer support via the telephone. I benefitted from my Cancer Connect volunteer, Marion from Central West NSW. It seemed a done thing that I should volunteer likewise.

Next week I report for a routine gastroscopy to see what is happening at the new junction [the old one was cut out during surgery!].

To be continued.

Canberra, Australia
snusher@gmail.com

Six monthly checkup with oncologist all clear.

2008-11-28T10:33:00.002+11:00

Greetings all,
Yesterday I visited consultant medical oncologist Dr Desmond Yip for a six monthly review. It was in May that I was 'deaccessed' from my post-operative chemotherapy. As you will know, everything has been going well for me since then, including our Northern safari and one month holiday in England.
Accordingly, it came as no surprise when Dr Yip ticked all the boxes, said my blood tests were good and asked to see me in another six months!! I did scratch around trying to find questions to ask him, but really there is little that is of great concern right now. Dr Yip is a man of few words, but I do trust him to tell me if there is anything important to take account of.
So, I am feeling good, have good appetite & digestive function, high energy levels and a stable weight at 80kg.
Not long now to my first anniversary of surgery in February
Canberra, Australia
snusher@gmail.com

Snusher meets Garpet. Hungarian blogging guru rolls out red carpet in Gordon.

2008-10-13T21:33:00.004+11:00

Well at last we have got to meet the man and his wonderful partner Leanne!
Today Lynne & I headed down the motorway 30 minutes south from Evatt, Belconnen to the far lower reaches of Canberra, Tuggeranong [disparagingly referred to as North Cooma] for a meet with Peter Garas [Garpet] and his partner Leanne at their home in the suburb of Gordon. Peter describes his occupation in his own blogger profile as a 'blog writer', and his output is indeed prolific. It was the continuing blog http://garpet1.blogspot.com of his own experience with gastro oesophageal cancer, right here in Canberra, that gave me information and encouragement from the first days of my diagnosis in October 2007. He has had the same surgeon & oncologist as me.
To meet him and Leanne was a real treat. The man himself was unchained from his feeding pole [nicknamed Marmaduke] and was free to greet us at the door. He & Leanne rolled out the red carpet for us and over several hours we engaged in free flowing conversation across a whole range of topics. Talk of cancer & its treatment was only a small [but important] part of proceedings. We could not resist the chance to compare scars, made by the same surgeon! The one on his stomach has healed so well that you can hardly see it!
Garpet now receives all his nutrition via a feeding tube [his oesphagus is constricted so he cannot swallow], and he patiently watched on while Lynne & I enjoyed the salmon, rye bread, capers, gherkins, dolmades, cheese & grapes that Leanne so generously provided. We in turn got to see Peter take on board a ration of fluids skillfully administered through a syringe by Leanne via his feeding tube.
Peter's voice was quiet but firm, and I could feel a real sense of engagement with this intellectual, articulate, urbane and widely travelled man. I had taken over a grab bag of books & CDs that reflected some of my interests...the usual culprits that you all know, sundials, French sundials, Captain Cook, cacti, astronomy, tarot, old maps, baroque music & family history. Lynne & Leanne also found much to discuss and several hours went by in a flash. Peter & Leanne are gregarious and popular people; while we were there a long time friend from Sydney called in for a quick visit.
The whole episode was a delight, and well, I cannot wait until the next time...perhaps next month? This is one of the up sides of cancer..the lovely people you get to meet by force of circumstance!!
Just for the record today I had my routine 6 weekly port flush at the Belconnen Health Centre.
Thats all for now folks.

Peter Snusher Davis
Canberra, Australia
snusher@gmail.com

Back from England & France

2008-10-13T20:58:00.006+11:00

Hello folks; the last posting on 02 SEP 08 was on the eve of our departure for holiday in England & France and dwelt primarily on my colon!!! This posting is far more pleasant reading and I can happily report that the four week holiday for Lynne & I was a roaring success and there were no setbacks. Four weeks felt like four months!!
My body [including the all important colon] performed without mishap in the face of a busy schedule; my eating and drinking were unrestrained. As much as possible I stuck to my routine of a morning walk before breakfast. It really was the case that my cancer and its treatment was a historical curiosity that had no influence on what we did or where we went. Of course, all of our family in England were absolutely thrilled to see me in such good form. Lynne & I in turn could thank them for all the suport and encouragement they gave as they followed this blog and kept in touch on the phone.
Selected pix of our holiday are in the Picasa web album at http://tinyurl.com/4hvwqn

Colon revealed

2008-09-02T20:35:00.004+10:00

Before I put this post up I had to consider whether it should rightly be considered part of the cancer saga; but then I think it is the lot of all cancer patients to forever be concerned that any illness or symptoms they develop may be linked to the disease or its treatment. In this case the first symptoms [blood in stools] did indeed develop towards the end of my chemotherapy, along with a lot of pain. The pain has resolved itself, but the bleeding is still there on an intermittent basis. Hence the colonoscopy.

That was performed today at the gastrotrACT clinic [another ghastly play on the initials ACT of the Australian Capital Territory] at the Brindabella Specialist Centre,Garran. Lynne drove me over to Woden, usefully filled in a few hours, then drove me home as per doctors orders.
The scope was carried out by the familiar face of Dr Chris Ashton. As in the case of previous gastroscopy, the in house procedures at the clinic were as smooth and comfortable as could be. Anaesthetic knocks you out and there is no recollection after you are wheeled into the procedure room and greeted by the friendly nurses.
After I came to, Dr Ashton brought the good news and staff brought me tea and sandwiches. The word is that nothing sinister was found and that the sporadic bleeding that I have had is minor and not a health issue. It does not warrant any immediate intervention. It may clear up of its own accord; he recommended a high fibre diet...to which I am already a dedicated fan!
The preparation for the scope involved a restricted diet, then a liquid diet, then no food or drink, all washed down with some soluble powder preps which tasted like lemon cordial. They did their job and flushed out the digestive system.
So, my internal plumbing has been checked and Lynne & I are ready for our England holiday.

Keep your bowels open and enjoy life.

PSD

Cruising on auto pilot

2008-08-16T10:56:00.002+10:00

Well, it has been just about a month since my last post, and really this one is a good news formality. I am feeling very healthy, eating well, digesting well, walking every day and enjoying the delights of a Canberra winter. My weight is quite steady at 77kg and this seems a very 'natural' weight for me. Last week I saw the surgeon Dr Mosse for a 6 month check up, but it was all rather a pleasant routine; he was happy, I was happy, so he said go and enjoy yourself and come back next year!!
Of course, my crucial medical advisor from now on will be the oncologist, Dr Desmond Yip, and I am booked to see him in November. I will also have an endoscopy in a few weeks time because I have been having some erratic bleeding from the back passage. I think it is due to the stresses and strains of a hyped up digestive system and bowel function; but anyhow, at 62 it will not do any harm to have a scope done. I am on medication of 20mg Pariet daily to control stomach acid; I have absolutely no discomfort or symptoms in this regard.

Last weekend Lynne & I went to Sydney, where we enjoyed our exposure to the 'big smoke' and saw the finish of the City to Surf fun run with 70000 entrants. In three weeks time we will be off to England and perhaps France for a four week holiday.
I had made enquiries about the possibility of becoming a volunteer mentor under the NSW Cancer Council Cancer Connect program, but I think I will now leave that idea until a full year has gone by next February. I continue to read the blog http://garpet1.blogspot.com/of fellow Canberra cancer patient Peter Garas who, with his wonderful carer Leanne, is struggling with a very bad set of complications. I would love to meet [and help] them, but it is for them to take up the option.
So again, thanks to all family, friends & neighbours who have helped and supported me & Lynne this last 10 months.

Peter

Walking back to happiness

2008-07-18T21:43:00.001+10:00

Well hello there everybody. It has been a long time since my last post, with good reason!! Lynne and I were away for four weeks on our northern safari to Queensland [4500km by car], and as soon as we got back we were helping our daughter Juliet get her house in Canberra ready for sale. She wants to sell up here and consolidate her property portfolio in Melbourne.

On the cancer front there is not much action to report. I saw my gastro specialist, Dr Chris Ashton, for a routine consultation this week; he was pleased with progress and has left me on a six monthly gastroscopy screening program. I commented on the outstanding success of the dilation he performed in May.I also revisited the friendly staff at the Zita Mary Clinic, where they performed a routine flush of my chemo port.

My appetite and food consumption is right back to where it was before the cancer. Current weight 77kg. I feel in good health and at last have been able to pull on my hiking boots and hit the pathways and tracks of Canberra. Did the big one on Tuesday, the 25km trail from Tuggeranong to Evatt. I get a bus for the 1 hour ride out to Tuggeranong, take a coffee at the Hyperdome shopping plaza, then set out at a leisurely pace. It was a beautiful cool day, just right for walking. I was glad I took toilet paper with me [the mark of experience] because I needed some very quick toilet stops!! Stopped for lunch at the Scrivener Dam, then up the hill into Belconnen. It was all so pleasant that I will be doing a repeat each week. I also walk every morning at least one hour before breakfast. Today I ran in the Customs Joggers 5km handicap for a time of 37m 15s.

I am presently reading the book Bad Hair Days by Pamela Bone, MUP 2007. [ISBN 9780522853698]. This is a witty and challenging account of her experience with multiple myeloma bone marrow cancer. Her writing skills as a journalist and columnist for The Age newspaper in Melbourne are very evident...I felt a great empathy for what she was saying. I commend the book as a good read.

This post is being composed in Windows Live Writer. A lot of the pictures that were on my blog have mysteriously disappeared; I must have clicked on some option somewhere to remove them!! I saw that Australia's oldest blogger died recently at age 108!!

On safari in NSW & Qld

2008-06-28T09:48:00.002+10:00

All is going well on our travels. Covered nearly 3000km to date. Now in Hervey Bay with my sisiter Gina. Last week Marion from Orange tried to make contact with me; and we would really like to see her on our way back to Canberra....problem is I do not have a surname, phone number or address!!! So Marion, if you read this, do send me a message on my mobile phone at 0400011370 giving the necessary info.
If Chrissy Newman from Curra reads this she should know that we are thinking of her and would love to see her, so again, please make contact if it suits you.

Love to all

Dilated gullet exceeds all expectations!!!

2008-06-04T20:57:00.004+10:00

Lynne & I are back from a four day trip [flying Virgin Blue Airlines]to Melbourne, during which we wined & dined extensively with our son [Jeremy], daughter [Juliet] & daughter in law [Claire]. We enjoyed clay-pot cooked seafood in St Kilda, Indian roti restaurant in Middle Park, legendary vanilla slices in Sorrento, Thai banquet in South Yarra, a cooked breakfast on Toorak Road, food hall mega sandwiches in Geelong and Spanish donuts dipped in chocolate. We ALSO visited the Good Food and Wine Expo at the Melbourne Exhibition Centre and excelled ourselves with samples there. The net result is that I have put on about 2 kg in weight and am up to 75kg!! Lynne also put on 2kg and is less impressed than I am!!

The other remarkable observation is that all taste, smell and appetite have returned to normal, and my capacity for food and drink seems to be almost unlimited. All the stories of small portion sizes, eating or drinking separately, reflux and dumping just are not applicable to me at this stage.
If all goes well we will be heading off to northern NSW next week.

Things are looking good.

2008-05-29T17:49:00.002+10:00

Today I visited my local GP, Dr Michael Brown, to review progress. Recent X-ray of the chest confirmed clinical diagnosis by Dr Bill Burke that all evidence of pneumonia has gone. This episode is now closed.
Dr Brown had a more detailed report of my gastroscopy, including results of biopsy and pathology, which revealed no evidence of any cancer. Dr Brown gave me prescription for 6 months of Pariet 20mg PPI tablets.
On Tuesday night Lynne & I went out for dinner at the local club on the occasion of our 36th wedding anniversary. Our new inlaws, Gail & Roger Kirkup, joined us on the spur of the moment. I excelled in the eating department and handled a full meal of crumbed and fried seafood. Appetite, taste, smell and capacity for food have all returned with gusto. Today I recorded 74 kg on the doctor's scales, and I am putting weight back on.

On a sad note our family cat of 10 years, Max, was put down with an incurable cancer. It was a tearful moment as we buried him in the back garden. He had lead a good life with us and was aged 14

Gullet supersized from 12 to 15.

2008-05-20T20:55:00.001+10:00

So folks, the gastroscopy procedure today went smoothly and painlessly. The three hour session at the Gastroscopy Clinic was as relaxing as a day spa, I was feeling delightfully drowsy even before the anaesthetic was administered. The immediate, and I mean immediate, outcome is a tangible improvement in swallowing! I was able to eat a sandwich in the recovery room and experienced no pain as the food went down.

As well as the obvious reason of looking to see what was happening in my new stomach, Dr Ashton was able to perform a dilation at the junction of the stomach and the oesphagus, widening it from 12 to 15 mm. He took some samples and reported some ulceration in the area of scar tissue. He has prescribed the Proton Pump Inhibitor Pariet 20mg to bring acid reflux under control. He will see me for a follow up in about six weeks.

Tomorow I will have a follow up visit to Dr Burke after my bout of pneumonia. All symptoms of that have long gone, so I am confident of a good outcome there.

The end of the beginning.

2008-05-17T12:22:00.002+10:00

As Winston Churchill said in momentous times, it may not be the beginning of the end , but it is the end of the beginning. So I have survived ECF chemotherapy, the pump cartridge has been removed and now I am into the phase [for the rest of my life] of making the most of the time I have and monitoring progress.
Psychologically it was a big moment when the pump came off on Wednesday. It was thanks and congratulations all round to the staff at Zita Mary Clinic, who have nursed me professionally and with compassion for these last 6 months. Life will be easier for me and Lynne from now on.
On Friday I went out for a short jog, the first in six months. I am going for a one hour walk each morning, and will start now to try and build up my strength and weight.
The biggest issue now is the pain and discomfort of swallowing food into my new stomach; if I make one mistake I have what feels like a golf ball stuck in my throat, and it is throw up or choke to death. On Tuesday I go in for gastroscopy with Dr Ashton, and he may be able to do some dilation at the same time. Follow up consultation with the surgeon will be in August and with the oncologist in November.
You will see I tried [successfully] to post a document to the blog from Google docs. This may be an easier way to set up documents for posting. I will try it out and see!!
Thank you all for your support thus far.

2008-05-17T12:21:00.000+10:00

This is another trial post from Google docs to google blog. I was talking to Peter Garas, fellow oesophageal cancer patient and web guru here in Canberra and he mentioned the capabilities of Google docs, so I thought I would try it out. See Peter's cancer blog at http://garpet1.blogspot.com/ It seems as though you can create, store and share many documents on the web; no need to store them on your home computer! Types of documents include word documents, spreadsheets and presentations. In a matter of a few minutes I seemed to get the hang of it. Takes my mind off cancer for a while!!!

A few wrinkles in this recent pic of me & lynne!!!

My Struggle

2008-05-02T16:33:00.009+10:00

At times I feel like one of those monsters trawled from the ocean depths, covered with scars and wounds of battle. Things are not getting any easier, but I am becoming used to the situation. The 5FU pump was changed on Wednesday, leaving just one more changeover to take place. Nursing staff at Zita Mary say that even when chemo stops there will be a two week runout while the chemo agents flush through the body. Only then can we look forward to a phase of recovery.
Here are some recent photos to make life sweeter. Cancer is a crap of a topic.

Benny and his Mum, my niece Vanessa. Benny swinging in the pistachio tree.

Pistachio trees outside back gate in early morning sunshine; looking up Starling Place. I planted the trees about 5 years ago. Parrot in the branches and magpie at base of trunk.

Nice pic of me, Lynne and grand nephew Benny on the haybale!!

Cycle 3 now underway...three weeks until the end of scheduled treatment!!**^^##

2008-04-25T13:20:00.002+10:00

Last Wednesday was the final scheduled full day session at the Zita Mary Clinic. Felt tired throughout the session and spent most of the time on the bed rather than on a recliner. All went well; blood counts were OK. Dosage rates for all my chemotherapy drugs have been reduced for this final cycle. As usual I have felt rather poorly at the start of a new cycle, but enjoyed a nice walk with Lynne through the autumn colours of the Canberra streets.

Marking time

2008-04-16T17:01:00.006+10:00

The scheduled chemotherapy for this week has been cancelled because of low blood counts. Actually I do feel rather better than last week, and have overcome the swallowing problem by eating really small mouthfuls of food, like a teaspoon at a time!

Lynne and I continue to enjoy walks on most days and the included picture shows us in the Australian National Botanic Gardens yesterday at about 1 pm solar time. The armillary sphere sundial is a great favourite of mine. The central gnomon rod casts the time telling shadow on the equatorial hour scale. I note now that the time set on the camera has not been corrected from daylight saving time!

My hair has grown back quite nicely over the 6 months, and I have had to cut an extra notch in my belt.

Cycle 3 is the last hurdle

2008-04-11T09:38:00.002+10:00

Hi there folks; I have not felt too good this last week, but the end is in sight. A very sore tongue and mouth have made even talking rather unpleasant. My mouth is very tender and sensitive to acids. Food swallowing continues to be very uncomfortable. Energy levels are low and I continue to loose weight. Last Wednesday the 5-FU pump was renewed and so I am into the last week of cycle 2. When chemo is over I will move to get a gastroscopy done on my throat to sort out the swallowing problem
I hear that my surgeon, Dr Charles Mosse, is himself not well, so I wish him all the best. The nicest thing now is the magnificent autumn weather, which I enjoy either on a walk or outside in the garden.
Enjoy your day.

Post operative chemotherapy continues

2008-04-06T11:10:00.002+10:00

Greetings to all;
Last week when I attempted a new post update I kept getting a red letter blogger error message to say that contact with blogger.com was lost and that autosave and publishing were compromised!! So that update failed of course. This time the connection seems normal so I will run this through quickly. My 5-FU pump was renewed last Wednesday after I returned a good set of blood test results, despite feeling poorly.
Now things seem to be in a holding pattern. I feel tired and listness, no appetite and corrupted taste and smell. Biggest problems is pain and discomfort in swallowing food, right at the new junction or anastamosis as it is called. My weight seems to have stabilized at 75 kg. I take whatever chance I can to eat high calorie food.
Tomorrow I will go to a 'Look good, Feel better' session at Calvary Hospital. Usually tailored for the women undergoing chemo, this session will be for the guys!! What will I do!!?? Have a face lift, dye my hair orange, get a tattoo and put a gold earing in. Seriously though it will be a chance to meet some fellow travellers.
Thanks for all your thoughts, prayers and support.

PSD

Cycle 2 of post operative chemotherapy underway

2008-03-29T13:08:00.003+11:00

Hello all,
Thanks for all messages of support and comments to the blog.
Blood counts were good, so last Wednesday I got the full day session for chemotherapy at the Zita Mary Clinic. 8 hours all up; biggest hold up was producing 400ml of urine needed to complete the treatment! I have less and less enthusiasm for the clinic sessions; I almost feel sick just going there. These last few days have been the worst I can remember. I feel lethargic, with no appetite and a queasy stomach. Each night a fierce headache settles in and I can only sleep fitfully. My mouth gets as dry as the Simpson Desert. Through the day I can enjoy pottering around in the garden on these sunny autumn days. Went with Greg Worthington to the Malkara Model Train show this morning as a diversion. Lynne is busy always trying to cook up soft easy meals that will tempt me.
Well just five more weeks to go!!

Week three of chemotherapy cancelled

2008-03-21T14:06:00.002+11:00

Hello all
Due to a low white blood cell count my third week of scheduled chemotherapy has been cancelled. Cycle 2 is due to continue next Wednesday. I still take antibiotics for the pneumonia. Overall my appetite is reduced; my sense of taste and smell are hyperactive and generally unpleasant. Every smell around the house and in the street seems exagerated and distorted.
Swallowing food is sometimes difficult and unpleasant and I have a feeling of a lump in my throat much of the time. Yesterday I tried a very small project in the garden...putting a door on a wood store. I was amazed at how slow and clumsy I seemed, as if my body and brain were working at half pace. BUT...eventually I suceeded!!! That was a boost to my morale! Right now it seems like a waiting game, counting away the days and weeks until the end of chemotherapy.

PSD

Follow up consultation with surgeon

2008-03-18T10:07:00.002+11:00

Yesterday Lynne and I met Dr Charles Mosse for follow up after surgery, which was six weeks ago. Dr Mosse was very pleased with my recovery; he emphasized again that the surgery was a technical success. We told him about the pneumonia episode last week. He said that was a setback, but not uncommon for this type of surgery. He was really quite happy with the X rays of my chest taken last week. I am recovering well from the pneumonia, and am now on a 10 day course of Rulide 300 and Cefaclor 375 antibiotics.
Dr Mosse said that about a third of my stomach had been removed and about three quarters of my oesophagus. It would be several months before things settled down, and I should make a follow up visit in about 6 months time.
Meanwhile I am into the second week of my post operative ECF chemotherapy, which is uncomfortable but tolerable. My mouth lips and skin seem dry, sore and wrinkled. I feel rather lethargic, but push for a one hour walk every day before breakfast. My appetite, taste and pleasure from eating food are all rather poor. The usual weight loss has occurred, but I feel as though I am stabilizing at 77kg, down about 10kg from pre surgery peak. This all leaves about seven weeks of chemo to go.

Thanks to all for their support and encouragement, especially cousin Brenda Pavlou in England.

Back home after pneumonia

2008-03-13T21:51:00.006+11:00

Message from Lynne:

Peter is back home after pneumonia

The good news this evening is that Peter was discharged from Calvary Hospital this afternoon. He is on oral antibiotics and looking so much better [and thinner]. We had the evening prawn and cashew nuts takeaway dinner Peter had ordered, and he is looking forward to catching up on sleep at home.

You will recall that we had a wonderful lunch with Michael Milton in December. ABC1 will repeat broadcast its Australian Story on Michael and his family on Sat at 12.30. Its a heartwarming and wonderful story of Michael's life, amazing success as an athlete and encounters with cancer. The pictures are of Peter's friend and neighbour Rick and the driver loading his boxes and belongings for a seachange move to Evans Head. We had a farewell dinner with Rick's daughter Julie, husband Peter and grandson Charlie and Rick's brother Rod just before Peter started this round of chemo. We look forward to visiting Rick at his new address later on in the year!

Through stormy waters

2008-03-12T22:31:00.003+11:00

Message from Lynne:

Peter started chemo last Wed and sailing conditions deteriorated over the weekend. Peter developed a harsh cough, headache, had no energy and was unable to eat or drink very much at all. By Sunday evening Peter was hot and listless and his temperature shot to 38.2 degrees. The next port was Calvary Hospital Emergency Dept which was very quiet and had few other clients waiting and Peter was seen quickly.

Xrays were taken, and pneumonia was the diagnosis. Blood tests came back much later and were fine. Peter was given antibiotics and settled for the night. The following day he sailed into a four bed ward, (which has proved to be a much quieter environment, with a more comfortable bed than for his previous vist to the Canberra Hospital for surgery in Feb).

Each day has brought further improvements. The antibiotics are working well with the cough is in retreat. Peter is eating and drinking more each day of his small portion meals, and going for walks around the ward and the building. He is looking thinner, but so far the wardrobe still fits. Today the Zita Mary team, Dr Yip and nurse James, paid a visit and decided the chemo treatment would continue as planned. Peter walked down to the clinic a few floors below this afternoon. The emptied 5FU pump was discarded and a new one installed for week 2. We were pleased with this outcome, as Peter wants to continue thru to the end of the 9 week cycle.

The medical team are pleased with Peter's recovery. If all goes to plan, he will sail out of the ward during tomorrow and into home port again.

Footnote: Peter has ordered king prawns with cashew nuts and rice ( from the local take-away) for his first home meal. Salty foods (rather than sweet) seem to be the preference during this chemo cycle.

Happy hour at the Hotel Chemo!

2008-03-06T18:18:00.005+11:00

Yesterday 5 March 2008 I started the scheduled post operative ECF chemotherapy at the Zita Mary Clinic, Calvary Hospital, following my Ivor Lewis surgery on 5 February 2008. This will essentially be a carbon copy of the drug protocol administered prior to the surgery...three cycles, each of three weeks, nine weeks in total, with the three drugs applied, Epirubicin, Cisplatin and 5-Fluorouracil [ECF]. In one way it may be easier because I have already been through it once before, on the other hand it may be more difficult because the side effects are cumulative, I have been weakened by surgery and I am just getting tired of the whole show. I say to myself this is the last phase.
The staff at the clinic were the same happy team, Teja, Noel and James. I was there from 09h00 until 16h00 and came away with my 5FU continuous infusion pump as before. It will get changed every week. Blood tests will be mandatory at the start of each week and the results must be good for me to continue.
There were two of those moments of coincidence during the day. One of the other patients I recognised as Joe, a Samoan guy I knew from taxi driving days. he has pancreatic cancer which is spreading. He is thinning down and pretty sick. Another moment was when another patient was lining up his next appointment dates and was able to fit them around his son's wedding. No such luck for me!!!

Google map of home added as a favourite link

2008-03-06T00:48:00.005+11:00

Just some monkeying around with Google maps...pretty cool I reckon!!! Will throw up a proper technicolored yawn tomorrow. Started ECF chemo today, so far so good.

ILO +22d

2008-02-27T18:42:00.004+11:00

A very significant step forward. Saw Dr Desmond Yip, medical oncologist. He was pleased with my progress and recovery from surgery. The second phase of chemotherapy will commence next Wed 5 March at the Zita Mary Clinic. He divulged some of the details from the pathology report after surgery. The tumor size was quite small at 2.5 x 1cm, but the spread of the cancer into adjoining lymph glands was extensive, with up to 13 nodes involved!!! What counts is that the surgeons felt that they had got out all the affected areas and a good margin around it. Phase 2 chemo is designed to knock out any mini outposts that may have escaped detection. I feel better each day. Managed a 10km walk this morning. Received Rev Colin Bradford from the North Belconnen Uniting Church as a visitor. Yesterday received magnificent floral arrangement from Brian & Marilyn Carle. Keep on cruzin....PSD

ILO +21d

2008-02-26T12:12:00.002+11:00

Well folks, it is now three weeks to the day since the Ivor Lewis surgery [ILO]. Weight 80.5kg. Feeling rather fatigued, but manage a walk each morning of about 1 hour. Lots of messages of support via the EC discussion group at ACOR.
Eating and keeping food down is a problem. My taste and smell senses seem hypersensitive. My appetite is much reduced and I just have a cup of food at each sitting. I am drinking Coopers Best Extra Stout to try and keep on some calories. My chest feels as though a shotgun has been fired into it and all the lead pellets are still lodged behind my ribcage. I am off all medication. Sleep is not comfortable. Lynne continues to give me the fullest possible love and support. Tomorrow I see the oncologist.

PSD

Battle scars

2008-02-23T12:13:00.003+11:00

A candid shot of my abdominal zipper scar taken 16 Feb 2008. Out of view is the bigger chest access cut between right ribs from shoulder blade to below nipple. New stomach lies in right chest. Still plenty of fat around!!!

On the mend.

2008-02-23T10:58:00.005+11:00

It is nearly three weeks since surgery and 10 days at home. I am recovering well,with noticable improvement every day. This morning I went for a comfortable 40 minute walk, including some litter picking on the way. [Some people walk the dog, I walk a litter bag to try a clean the place up a bit]
Yesterday was a huge step forward when I drove my car across to The Canberra Hospital [20km] and revisited Ward 10A; Max and Josef still there from my stay. Josef was asleep and Max was about to get wheeled outside by his daughters for some fresh air and sun. Also visited Doug Fry in ward 9A, Doug is a friend from Customs Joggers who had a stroke several weeks ago, he is recovering well.
Then drove up to Regatta Point to participate in the weekly Customs Joggers 5km lunchtime jogging event. There were quite a few surprised faces to see me back on deck so soon! There were farewell drinks for my best friend Rick Hatcher, who leaves soon to live in Evans Head.
Rick Hatcher, Caroline Cramer and self at
Regatta Point Customs Joggers.

I continue to get messages of support from friends, neighbours and peers. A special word of thanks is due to The Cancer Council volunteer Marion [stomach cancer] who has rung in regularly to offer me encouragement from her farm near Orange, NSW.

Recovering at home

2008-02-20T14:10:00.003+11:00

Lynne, Juliet & I in the walkway...looking good!

It is now five days since I was discharged from the Canberra Hospital. I feel slow improvement each day, but I dont know what to expect; I am catching up on sleep. Yesterday I walked about 1km to the local shops and back at a slow steady pace. Enjoyed an ice cream, but threw that up on my return.

I can eat most things in small quantities, but I have been plagued by a sensation of reflux especially when in bed. Basically I can taste the food I have eaten, and it is none too pleasant. I am also conscious of a weight inside my chest cavity. All the wounds seem to have healed well. Today I threw up after breakfast, rather glad that it happened; it cleared things out.

Passenger Disembarked

2008-02-17T22:10:00.005+11:00

Message from Lynne

Friday 15 Feb was a very special day in the life of the family. Peter was discharged and floated into much quieter waters, while I flew to Melbourne for our son's wedding. This was held at Quat Quatta, a magnificent setting in Rippon Lea with beautiful grounds and interior. The wedding was held in the garden with the reception inside for just under 100 guests. 26 degrees and sunshine made it perfect conditions. The wedding went smoothly and it was lovely to catch up with old friends and family and meet new people and friends of both, and relatives on Claire's side of the family.

Wedding snaps showing the happy couple, Jeremy and Claire, with three attendants each who kept them both relaxed and looking forward the the beautiful wedding they had planned. There were long stemmed red roses in abundance, and many small thoughtful touches. Claire is one of four sisters, so I've included a snap of the four of them. Amy, her older sister has a daughter, 22 months, who took the rings to her Dad for the happy couple, and Laura, her younger sister, has a son, Oliver, six months who was on his very best behaviour. Peter had a phone call to the newly weds during the evening and it was a great pleasure to welcome Claire into our family, on behalf of us both. They will honeymoon in Thailand and America and be away a month.

Our daughter, Juliet, returned to Canberra with me, so Peter is getting lots of attention as he recovers from surgery!!

I've enjoyed looking after the blog while Peter was in hospital and many thanks for the emails and phone calls from friends and family. You will have Peter as captain at the helm again, and I will become part of the crew of supporters around him.

Back in home port.

2008-02-17T14:12:00.002+11:00

On Friday 15 February I was released from The Canberra Hospital, 11 days after the Ivor Lewis operation. My sister Gina drove me home to my own home and bed. The surgery has been declared a technical sucess, the biopsy results look good and I am now into the phase of recovery at home. I am eating cautiously, still with some discomfort swallowing at the back of the mouth. Naturally I am sore and tender throughout the chest and rib area, and feel the effects of surgical rearrangement of my innards. I get easily tired, but can manage a walk around the block. I will update with more photos soon.

Anchors Away!!!

2008-02-13T21:45:00.007+11:00

Gina, Jeremy, Lynne and me in grounds of Cafe Hoz, TCH

Message from Lynne

Day 9 was so special!
All lines and tubes are now out, and with the help of morphine Peter had his first night's sleep in a week as a prelude to the day. He showered and shaved himself and was looking bright eyed and amazing. Sister Gina arrived first, to check on the patient, to be followed by Jeremy. Jeremy arrived with friends going back to college and Uni days, Ro and Nick and flowers, chocs and a card. Ro and Nick have just got engaged - love is certainly in the air just now - we are so pleased for them and they will be at the wedding!
We were such a noisy crew we were banished from the ward, with a seriously ill patient opposite, and the party adjourned to the hospital cafe. We ordered black coffee for Peter, but one (or 2?) corners of Gina's chips were stolen by Peter and Jeremy wheeled him outside for temporary hospital discharge.
The next call was to fiancee Claire's Mum on Level 8 of the hospital, and Mum-in-law to be, Gayle popped down later in her lunch break. We called on Level 9 also, for Peter to visit a friend who is also in hospital - (a stray strawberry was removed from a slice of pavlova there by Peter). Back to Level 10 for the rest time and we withdrew briefly.

Jeremy and I spent time with Peter in the afternoon. The staff are talking about Friday as a possibility as a discharge day. Visitors are welcome now, but please ring the hospital from Friday to check just where he is in port as I would hate you to have a wasted trip. Sister Gina will be there for discharge and to see Peter home into his own bed, if discharge permission is given while I am away. (Of course, this is subject to how his new stomach goes handling food). Surgeon Dr Charlie Mosse didn't put in a feeding tube and is very pleased with progress to date. He is getting married himself the week after our son.

Peter had handled fluids - clear soup, fruit juice jelly and lemonade, so the dinner tray this evening progressed to yogurt and custard. After dinner Peter walked from the ward, to the lift, and through deserted hospital foyer. We rested a while and then did the return lap - the longest walk so far. I left the patient in bed, tired but soo happy after this amazing day. Next port for me, disembark in Melbourne for the wedding - just two sleeps away! Many thanks for the support from everyone.

Anchored in ward bed

2008-02-11T23:22:00.001+11:00

Message from Lynne

Day 7 - its a week today in a regime with nothing to eat or drink for Peter. The barium test was done today. Late afternoon we were told it went well and the results will be with the medical team tomorrow. Most of the tubes and drains will come out and the wonders of fruit juice, lemonade and jelly will wobble onto the horizon. Peter has been doing lots of deep breathing exercises and was able to function without an oxygen supply today. He went for a long work with the physio, seeing a bit more of the ward and far horizons. His throat is dry and voice raspy, but is looking forward to tomorrow and the promise of freedom of movement. He is still sleep deprived.

Peter's sister, Rebecca recently spent six weeks in South America and he received her gift of snug llama slippers and a soft brown hat with llamas on it, which you will see him wearing and enjoying.

Our son, Jeremy, marries his lovely partner of five years, Claire, this Friday 15 Feb in Melbourne. Wedding plans were made months ago. Peter will still be in port in Canberra Hospital and unable to ship out to attend. He will have the 24 hour care of the wonderful hospital staff and his sister, Gina will be his special person. I will fly to Melbourne on Friday and return on Saturday night, with our daughter, Juliet, who will stay a few days.

Shh...don't tell Peter, as its a secret...Jeremy is flying to Canberra on Wednesday and will spend special time with him before the wedding...shh!!

Floated out of intensive care into a ward

2008-02-07T21:28:00.000+11:00

message from Lynne

Day 1 in ICU was forgettable - noisy, difficult to get pain management appropriate, and no sleep day or night for Peter.

Day 2 was sooo much better! First walk with hesitant steps with the physio on one side and a wardsman on the other, and all the equipment rattling along at the same pace. A foot and leg massage for Peter's feet and legs from me, as they were freezing, but then warmed up later. Like all patients, he hates the tight white hospital stockings, worn to avoid blood clots. The morphine pain regime has been sorted out and keeping pain low most of the time; however it moves in with movement, coughing, etc. Breathing exercises underway hourly, plus coughing, and some mucuous that needs to be cleared and dislodged.

The afternoon brought a journey floating/jolting via hospital bed to a ward. Peter was helped to settle in by friend Julie, a nurse at the hospital, who has just completed her midwifery qualifications, and has worked on the ward previously, plus ward staff. Hopefully, he will catch some sleep tonight, as he is very sleep deprived.

Its no food or drink while Peter's body heals. Monday Peter is booked for an xray procedure called a barium swallow, and will swallow a solution which will show up on xrays. This will reveal if surgery has been successful. If so, fluids will be tried, and later jelly, soups, and so on.

Peter is in good spirits, and the staff are pleased with the progress he is making. Thanks for support from all friends and family.

Journey from stormy seas to safe harbour

2008-02-05T22:44:00.000+11:00

Message from wife Lynne

Peter spent eight hours in theatre today and was discharged into a four bed area of Intensive Care this evening. Today's trip resulted in his body being linked up to lots of equipment to monitor progress and support him for now. Peter had an epidural block and was not in pain when I saw him. He was awake and made a few comments and asked a few questions. He gave the thumbs up signal as I left him.

Many thanks for all the phone calls, visits, and emails from the caring friends and family we have around us. I will make further entries on Peter's journey.

Canberra and cancer are in a galaxy far far away!!!

2008-01-30T16:13:00.000+11:00

Overlooking North Head beach,
Murramarang National Park. Tollgate Islands
and Batemans Bay in the background.

On the front verandah at the Ibis Cabin,
Lakesea Park, Durras Lake

Gnarled and windblown sand
dunes at Durras Lake.

Coastal rocks below North Head trig,
Murramarang National Park
looking north.

Ready to strike a match.

Hello all;

Lynne and I have just returned to hot Canberra after an idyllic five days away at the NSW south coast. We rented a luxury cabin at Lakesea Park, on a site wedged between the ocean and Durras Lake. Out of mobile phone contact and surrounded by the wonderful sights and sounds of the Murramarang National Park. Sand dunes, surf, sun, shadow all worked their magic. I felt really fine apart from bouts of stomach ache. Floating in the sea I was left amazed that a world that could turn on such a stunning display of beauty could also serve up cancer...but I guess it is all part of the fabric of existence. There were moments when I would have been happy just to drift away with the tide and become a part of the flotsam of the ocean. See some pix to capture the flavour of the moment!!

Photographers shadow; sunlight

ripples on Durras Lake.

Today I turned up another website at

http://www.ciap.health.nsw.gov.au/hospolic/stvincents/1993/a07.html which gives the nursing perspective on caring for patients after Ivor Lewis surgery. My preadmission clinic has been completed at The Canberra Hospital, and I will be admitted at 14h00 on Monday 4 February.

Two weeks to go before surgery!!

2008-01-24T14:11:00.000+11:00

Things are going well during this countdown phase. I have even been free of the stomach aches that have been my main complaint. I have been taking Nexium 40mg tablets these last three days and I have been completely free of the aches. I am also drinking two or three cups of green tea each day. Tomorrow Lynne and I go down the coast for a last few days before the next stage of my treatment begins. Thanks to everyone for their ongoing support.

Latest consultation with surgeon

2008-01-18T17:59:00.000+11:00

Today Lynne and I got to meet with my surgeon Dr Charles Mosse. It was a case of confirming a course of action that I am already comfortable with, so there were no difficult questions to be asked or decisions to be made. As on our previous appointments, I found a sense of calm reassurance in talking with Charles. He told me that he had performed exactly the same procedure just a few days ago on a patient with my same symptoms. The surgery had gone well.
My surgery [Ivor Lewis] is scheduled for February 5, 2008 at The Canberra Hospital.
After removing as much of the tumor and its surrounds as possible, along with localized lymph nodes, he would join the remaining stomach to the stump of the oesophagus, and so set me up with a new digestive tract. There was a thoracic surgeon specialist who might be available to do the chest part of the surgery; otherwise Dr Mosse would do it all [ chest and abdomen] himself. He said that the total length of time in surgery could vary widely from as little as four hours in an uncomplicated case, to 10 hours or more if there were complications.
On a day by day basis I feel pretty well. My only complaint is these nagging stomach aches that recur most days, usually around late morning, then dissipating through the rest of the day. Lynne insisted on me buying two new sets of summer sleepwear ready for my hospital stay!! So it will be slice, dice and splice in two weeks time!! Thank you everyone for your thoughts, prayers and good wishes. To be continued!!! For a very excellent website giving the experience and insights of Cary Johnson with his esophageal cancer go to http://www.esophagealcancer.org/

Surgery on the horizon and a new sunrise after that.

2008-01-14T20:44:00.000+11:00

Thanks to all commentators on my last blog entry...nice to hear from you MM. Wishing you and the family all the best for the Olympic year 2008. Thanks for that wonderful lunch!!
Consultation with Dr Yip was rather matter of fact. Not much for him to say or do except to sign off on surgery. Cruising through these last few weeks. Lyndall and I plan a week down at Batemans Bay over the January long weekend..just before surgery!! Lyndall has been authorized as a contributor to the blog for when I am out of action.
Next appointment is with surgeon Dr Mosse on 18 January. I did have the thought that although the surgery is big for ME it is JUST as big for the team of surgeons, specialist and nurses who take another persons life in their hands as they go through an 8-hour procedure. Their skill, dedication and humanity brings tears to my eyes.
A big psychological step forward was to start making appointments for dates AFTER the surgery. My Cancer Council support volunteer Marion phoned in to check up on me tonight; she will call again after surgery. I said that when I take that call it will be proof that I am still alive!!!

Consultation with Dr Yip

2008-01-08T20:34:00.001+11:00

Dear readers,
Feeling good, my main complaint now is this mysterious stomach ache that comes and goes.
I am trying to pull together all the questions that I want to put to Dr Yip, my medical oncologist, who I will see tomorrow. In fact I have only seen him twice over the entire course of my chemotherapy. I guess this next appointment will be the 'review' process. I will ask about the following:

Follow up to the tests done prior to chemotherapy: gated heart pool scan; hearing function. Do they need to be repeated now that chemotherapy is over? My heart and hearing seem good, so I guess that no repeat is necessary?
New tests to be done to assess cancer staging and hence my suitability for surgery. Possible tests include: PET scan; barium swallow; laproscopy; endoscopic ultrasound. [The obvious CT scan has already been done and shows favourable results]
Overall management of my chemotherapy: symptoms; side effects; toxicities. What was my comparative rating?
Need for a new referral to my surgeon Dr Mosse.

While working all this out I once again laughed and cried my way through another great EC story at Cathy's EC cafe website. It was the story of blind musician Ray Warke at http://www.eccafe.org/sto/rwarke.html. He is still around two years after surgery and hooking into Guiness, spicy chow mein and potato chips...he must be recovered!!! [Seriously though, there are complications and I sent an email just to check that he was still in the land of the digesting]

Then I got more technical and read through the audit of gastric and oesophageal cancer [including cancer at the junction] in Scotland at http://www.crag.scot.nhs.uk/committees/CEPS/reports/0_prelims.pdf. I finished that with the realization that curative surgery for cancer at the junction is the biggest surgery that can be performed on a patient..ie longest and most risky!! Nobody wants to perform or be subjected to it unless there is a real prospect of good outcome. Happy daze!!!

The end of the beginning

2008-01-04T21:17:00.000+11:00

Today was a big day. Got the results of the CT scan which show a good response to the chemotherapy. The primary tumor and also coeliac nodes were 'substantially' reduced in size. By good fortune I saw Dr Mosse [surgeon] in his rooms and we have pencilled in surgery for the 5th of February. This will clash totally with Jeremy's wedding in Melbourne on the 15th, though as Lynne pointed out, it is likely I will be in hospital still at that date. I am booked to see Dr Yip [medical oncologist] next Wednesday.
I also got to the Customs Joggers lunchtime group; I rolled out a 30 minute slow jog, the first in about two months. Other members were pleased to see me back, and as usual I enjoyed the company. My feet have radically improved now that chemo has stopped; I felt rather tired, and my stomach was upset, so it will be early to bed tonight!!!

Review of chemotherapy

2008-01-02T22:40:00.000+11:00

Open letter: Review of ECF chemotherapy

As the New Year begins I have just completed a three cycle [9 weeks] preoperative chemotherapy using the ECF chemotherapy protocol [Epirubicin, Cisplatin and 5-FluoroUracil] for the treatment of oesophagogastric adenocarcinoma. This is my first ever exposure to chemotherapy. No radiotherapy was used.
Overall I believe I have tolerated the treatment well; two weeks were missed. One because of unsatisfactory blood test results, the other because of severe inflammation of the skin on feet and hands. Total treatment was therefore only seven weeks.
The chemotherapy was under the medical supervision of Dr Desmond Yip, medical oncologist. It was administered with care and a good dose of wit by clinic staff at the Zita Mary Clinic, Calvary Hospital, via a chest implanted port which functioned perfectly throughout. ACT Community Nurses were available on call at home, but treatment was uneventful. The epirubicin and cisplatin were administered on Day 1 of each three week cycle. The 5-FU was administered continuously over the 21 days of each cycle via a portable infusion pump. Anti-nausea drugs were administered for the first 3 days of each cycle. I now look forward to a thorough review of the chemotherapy outcome and an assessment for surgery, using whatever tests and procedures that are available and appropriate.
Side effects
No nausea, no vomiting, no infection, no hospitalization, little fatigue, no hair loss, no hearing impairment. The difficulty in swallowing disappeared within days. My eating, appetite, taste and smell were only little affected. There was constipation at the start of each cycle, but was relieved without the need for medication.
The most unpleasant side effect has been and still is stomach ache. It was intermittent and at times quite painful. Sometimes all day, sometimes not at all, sometimes only on waking in the middle of the night. The ache was relieved sometimes by Panadeine Forte, sometimes by slippery elm bark, and otherwise by just drinking water.
The other major side effect was severe inflammation, drying, flaking and blistering of the skin on the feet and the hands. Red and purple blotches was the best description. At times walking was very painful. The inflammation appeared to be a recurrence of a previously existing condition, infection or immune reaction. Best relief was to stay off my feet or soak in iced water. Blistering was extensive and in some instances blood blisters.
Other side effects noticed were disfiguring, discoloration and banding of the fingernails; darkening and discoloration of the skin. Also dryness of the mouth and soreness and cracking in the lips.
Psychological profile
I feel I have coped well. I accepted the diagnosis with calm; I was not shocked, angry or dismayed. I do not seek to ascribe cause or blame or feel guilt for this disease or to seek a miraculous cure. I have had lots of good luck throughout my life, now it is my bad luck to be dealt this disease. I have had wonderful support from my wife, children, family, friends, neighbors, clinic staff, community nurses and cancer survivors. I welcome their thoughts, prayers and advice. I have very quickly appreciated that so many other people have been affected either directly or indirectly by cancer. I have read extensively on the topic, I have joined online discussion groups and established my own blog. I have cried and laughed as I read stories of survival and defeat. I have read a full description of the type of surgery I am facing [not for the faint hearted!!].
I am well aware of the many complimentary and alternative treatments for cancer. I trust my life to conventional medical wisdom and practice; I believe in the inherent professionalism and humanity of my doctors.
I am thankful for the excellent medical and support facilities right here on my doorstep in Canberra. I know the risks associated with surgery and recovery. I have met survivors and heard of people who did not survive. I am ready to proceed to surgery and be a survivor. I pledge my future support for any other sufferers…the ‘obligation of the survivors’ as Lance Armstrong puts it in his book.
May peace be with you.

Cc
Dr Desmond Yip
Dr Charles Mosse
Dr Michael Brown
Zita Mary Clinic staff

Peter S Davis
Canberra
Tuesday, January 01, 2008

Under siege from the chemotherapy

2007-12-27T18:40:00.000+11:00

Well, this is it, the last week of my first phase preoperative chemotherapy! Just 2800mg of 5FU to be pumped into me and I will be done. This week is probably the worst I have felt in all the nine weeks of chemo. I am plagued by itches, rashes and blisters through the feet and on one hand. I believe it is a latent chronic fungal skin infection that has been let loose by the direct or indirect effects of the chemotherapy. The blisters on my feet are every bit as painful as those I suffered earlier in chemo, and are compounded by blood blisters around the toes. Walking is only possible as a halting shuffle.
I have also suffered quite sharp stomach aches and pains, coming on top of a general stomach unease. My appetite and taste seem to have survived unscathed, but I am eating less and am down to 83kg. My hair is still intact. I have escaped nausea.
It has been lovely to have my son and daughter and their partners staying with us for the Christmas period, but I will be SO glad to have the house back when I can do just nothing. I am really feeling the pinch now and just want to really unwind. I suppose there will be a four week interlude between chemo and surgery, we will see. I thank all family and friends for their thoughts, good wishes and prayers

Happy 62nd birthday

2007-12-18T12:48:00.000+11:00

So yesterday was my 62nd birthday, and what a day it turned out to be. The day was always going to be big because it was my daughter Juliet's day to be conferred with her degree of Bachelor of Business Administration from the University of Canberra. She has achieved this after years of part time study. The ceremony was held in the Great Hall of Parliament House with full academic pomp and circumstance. That took up the entire morning. Juliet and boyfriend, along with Lynne and I, then went off for a celebratory lunch at nearby Kingston. That is where the big birthday surprise was sprung by my children Jeremy and Juliet, who together orchestrated a rendezvous with Michael Milton and his wife Penni and daughter Matilda.

Michael is an Australian paralympic champion cyclist and skier, his story is on the web at http://www.michaelmilton.com/. He was quickly a focus of my attention after I was diagnosed because of his recent successful treatment for oesophageal cancer. So to be actually meeting and dining with him was a remarkable boost to my morale. He and his wife and child were wondeful company.
The day then unfolded with a non stop round of phone calls which left me rather exhausted by the end of it all. Thanks to all for birthday wishes.

We have lift off into Cycle 3

2007-12-12T22:23:00.000+11:00

C3, D1. Went in to the Zita Mary Oncology clinic this morning. After consultation with stand in doctor and an all clear from the blood counts, it was a case of hunkering down for a day in the 'office'. I was there from 10h30 to 16h30 and got the usual chemotherapy dose along with hydration and antinausea tablets and IV drip. Am home now with my 5FU pump squeezing out the Agent Orange across the fields of cancer cells. I really felt rather unwell throughout the day, especially an upset stomach, though I feel better now. Passed the time chatting with fellow patients Ros from Cooma and Ellen from Canberra. Have just swallowed my dose of 'liquid sawdust' as I have dubbed the slippery elm bark infusion and will retire to bed!!!
Sweet dreams with someone you love.

PSD

Ready to start up again

2007-12-11T20:16:00.000+11:00

Well, I have had a week off of chemotherapy. The severe skin outbreaks on my feet and hands have subsided, though it is quite obvious where they have been, with a residual discolouration beneath the skin. Today I gave my weekly blood sample for check up, and provided the doctors agree that my skin condition is OK and the blood counts are good, then it will be into the Cycle 3 tomorrow.
Since the last post I have heard directly from the blogger GARPET who has passed on invaluable advice based on his Canberra experience of tackling gastric cancer. At his suggestion I subscribed to the esophageal cancer mailing list of ACOR [Association of Cancer Online Resources] at http://www.acor.org/mailing.html. My introductory post there elicited two return posts at the mailing list and five direct emails of support and encouragement!!!
I feel OK, main discomfort now is a recurrent stomach ache which
can come and go with no real pattern, though coffee does seem to trigger it.