Hi and welcome to my experiences and escapades thatís I have been though over the past few years. I realise that it quite long winded but if it helps other to understand what to look forward to then read onÖÖ..
This page is dedicated to my wife Bev who has put up with all this and more over the past few years and without whoís help and understanding I donít think I would have coped as well as I am.
All below are my own personal thoughts and ideas.
I have no official medical knowledge so please consult your own medical practitioner for further advise
Here we go with the diary of my life
After donating blood regularly for several years, suddenly in Dec 96 my red cell count and blood pressure were found to be low. I donated blood again in March 97 with the same results. The only other symptom that indicated to me that there was anything wrong was that I was constantly getting tired. I put this down to excessive workload as I had a full time job as well as trying to run my own business from home.
My wife persuaded me to see my G.P. which I did on 14th March. My G.P. gave me a full examination and could not find anything major wrong, and suggested a series of blood tests to see if that would reveal anything. We discussed prostate problems but as I was only 42 years old and had had no symptoms in that area it was just about to be washed over, but my G.P. said that a PSA test would rule it out for sure.
The results of the blood tests two days later revealed a PSA of 11.7 . My G.P. then explained that there was a chance of prostate cancer as all the other blood tests returned normal. A DRE by my G.P. confirmed an enlarged prostate. An appointment was made to see a specialist†††
Prof. K.Kaye ) of the QE 11 Medical Centre in
8th May - I saw Prof. Kaye and after another DRE we discussed what tests would be done to confirm that it was cancer and what the options would be after that.
16th May - I had a Trans-rectal biopsy . This was quite painful during and for a while afterwards, but the next day all was fine. I experienced a small amount of blood loss as was expected but this cleared up within 24 hrs.
21st May - I had a Bone scan. This entailed having an injection of a radioactive isotope that collect around certain tissue to see if the cancer had reached the bone marrow. I was placed on a machine that had a tunnel like part, which was slowly moved up my body taking certain X-ray pictures. After the injection I had to drink lots of water to flush it all out of my system.
28th May - I had a CT Scan. This was similar to the bone scan except that instead of an injection I had to drink a load of this liquid which tasted very much like warm liquorices.
Another PSA test on the 29th May showed that my PSA had now reached 18.5.
4th - June I had another appointment with Prof. Kaye to discuss the results of the above tests. It was decided that I would have a radical prostatectomy due to my age. He then went on to explain all about the effects that it would have including impotency and possible incontinence. As I did not have private medical cover I was told that I would have to wait a while before I could get a bed in public hospital. The date for the operation was set for the 30th Sept. He then decided that I start a course of Andrucur tablets. These tablets are to reduce the testosterone levels and therefore try to stop the growth of the cancer as it "feeds" on the testosterone.
There were a few side effect of these tablets, the worst being the mood swings and depression.. Several days all I wanted to do was burst into tears and to be left alone. This got the better of me and after about 6 weeks ( 4th Aug ) I stopped taking the tablets after contacting Prof. Kaye.
13th - Aug still very depressed, and in desperation my wife took me to visit my G.P. who prescribed some mild anti-depression tablets. I also had another PSA test. This time the result was 1.1. I queried why it was so low and was informed that this was the effect of the Andrucur. And that I could keep on taking it for a while if I wanted but due to the side effects declined.
1st Sept - had a flexible cystoscope and a urine flow measurement. This was to enable the doctor to see all the way up into my bladder to make sure that all was OK.
This was quite uncomfortable for a while but as the day went by all returned to normal.
I also had to start giving my own blood for the operation. I had to donate one unit of blood every week for the next four weeks. This was OK for the first two visits but then my iron levels dropped and I had to start taking iron tablets and two bottles of Guinness a day to increase them.
30th Sept - I went to hospital and had the operation in the morning. I came round that evening with all these tubes and drips and a large dressing on my stomach.
The next day the nurses dragged me out of bed and showered me before trying to make walk around the room. Although I was in a public hospital, because of the severity of the operation they gave me a single room. This only lasted till the fourth day when they said that I was well enough to share a four bed ward. This was terrible compared to the single room, There was so much going on all night that I didnít get rest or sleep at all. The morphine drip lasted two days before it was taken away but the oxygen only for one day. I expected a lot of pain but I was surprised on how little there was. It was only when I laughed or tried to move that things hurt too much.
6th Oct - after 6 days they let me home to rest.
After being home for a few days I started loosing blood through the catheter which I did not expect. My G.P. suggested that I go to the emergency dept. at the hospital. After waiting down at the hospital for hours eventually the doctors decided that it was normal to expect this and that I should have been told. A few days later I had severe stomach cramps and pain. So much so that I was taken back to the hospital in an ambulance. They gave me two sorts of X-Rays and some other test to see what was wrong. The test all came back normal so I waited another twelve hours to see an urologist who said that it was more than likely just trapped wind and would go shortly.
15th Oct - I had to go back to have the catheter removed. This was the part I was waiting for, one, to just get rid of the thing that dangled and caught on everything and, two, to see if I was continent. This was one of my biggest fears that I would not regain continence. After about 6 hours, barring a few minor dribbles all was well and I am pleased to say that even today all is still well.
20th Nov - I had a follow up visit to Prof. Kaye to discuss the operation results and my progress since. The bad news was that because of the high Gleeson score of 9 he could not be sure that all the cancer cells were removed and the fact that the tumor was within 1 mm of the prostate shell was cause for concern. It was obvious from these results my prostate cancer was a lot worse than was first thought. We discussed further treatment in the form of injections, tablets and radiotherapy.
So for the next six month I am to have a monthly injection of Lucrin Depot along with daily tablets of Flutemide. This will slow down any re-growth of the cancer cells. After this period I shall undergo radiotherapy of the abdominal cavity to kill off any remaining cells hopefully.
16th Dec - I started undergoing treatment for impotency by the use of needles and injecting Prostaglandin . This after a few times has not proved to be 100% successful but I am to see another doctor on the 8th Jan to see what can be done. I think that with time and a slightly stronger dose things will be fine. While I realise that the injections are not to everyoneís liking. Once you have done it once then there is nothing to it. I strongly recommend that you at least give it a try.
8th Jan - visited the Oncologist and discussed the effects of Radiotherapy treatment. An appointment was made for a set of X-rays and another CT scan to be done on the 19th Jan. Radiotherapy treatment would start on the 20th April and would be done daily for the next seven weeks. The main disadvantage with this treatment is the damage it can do to the bowels but the doctors said that it would be minimised by other treatments. I decided that I would accept this risk and opt for the treatment.
I also visited the Reproductive Clinic and had a follow up meeting to discuss the injection therapy. It was decided to increase my dosage for the time being and to call back next week. It will then be decided whether or not to increase the strength of the dose or not.
14th Jan Ė Another visit to the Reproductive Clinic. They decided that a further increase in dosage would be needed as I am only able to achieve about an 80% success. Another follow up visit was arranged for the 20th Jan.
19th Jan - Visited the Radiotherapy Unit. Watched a video on the use and effects of Radiotherapy. X-rays and a CT scan were taken in preparation for Radiotherapy treatment, I was tattooed with three small marks on my lower torso which will be used for future reference points during treatment. Discussed with the staff all aspects of the forth coming treatment and was given a booklet about the effects such as nausea, vomiting etc.
20th Jan - Visited the Reproduction Clinic again. This time the strength of the injections were increased and there was some improvement. Given a further dose to take home and try, asked to call back with results with a view to getting a script if all is good.
Contacted Reproduction clinic again on 22nd Jan and said that the latest injection was almost there but needs more. Picked up "double dose" to try. After trying this "double dose and finding that it still did not work properly we decided to give up on the self injection therapy.
As I was still having my monthly hormone injections, the next time I saw my GP we discussed the injection therapy again and came to the conclusion that I had a bad hormone imbalance due to the Flutemide tablets and the Lucrin Depot injections and these were affecting the prostaglandin injections. It was therefore best I except the situation and wait until early July when hopefully my hormones should start to get things together again. One positive side effect that I was noticing was that the bald spot on the top of my head was staring to grow again !
12th Mar.- Went and saw a specialist in impotency as things were starting to get frustrated. He advised me on all the different types of injection therapy that there was, but, as we explained to him they did not appear to work with me. He agreed that some did not work and that I should try "Caverject" once all my Radiotherapy had finished. As a last resort there was the option of a implant . He showed me the whole thing, I was very surprised at size of the whole thing but was assured that it would all fit in and that it could be done at a day surgery. I said that I would think it over and get back to him later. The cost of the operation and implant is approx. $10,000 A$ but most of this is covered by private medical insurance after the qualifying time of 12 months. There is a small gap of approx. $1800 to pay.
20th April.- Visit to the Radiotherapy Unit for the first of 33 treatments ( 1 a day for the next seven weeks). This was not in the least bit painful. Just lay down on this huge bed of the X-ray like machine . The staff then position you accurately using the small tattoo marks that were done some time ago. You then just lay still while the machine rotates around you and pulses X-rays at you. The whole thing takes less than 5 mins from start to finish. You donít even need to get underdressed.
After about treatment 9 I started to get some stomach pains and general aches. The doctors at the hospital informed me that mild aches and pains were to be expected but to make sure they did a full urine test and gave me a course of some antibiotics and within a few days this cleared things up. The urine test results came back as normal so the stomach pains were thought to be a mild infection. I still suffered the bouts of depression and some days it was so bad that I could not even be bothered to get up and go to work. I just kept on thinking that only a few more weeks to bash at and then it will all be over hopefully and my body should start to recover back to its normal self. About treatment 16 I started with the stomach cramps again only this time I had the diarrhea as well. I knew that this was one of the side affects but had hoped that it would not appear until later on in the treatment, at present I was not quite half way and still a long way to go. The doctors gave me a course of anti- diarrhea tablets and I was told to watch my diet from now on and see what came about. The tablets worked within a day and my stomach was back under a bit more control much to my surprise and relief. After a few days I was able to stop the tablets altogether. I was to need them again to wards the end of my treatment but only for a day or two which I did not mind that much.
By the time I reached treatment 24 I was feeling very tired indeed , everything was too much effort and all I wanted to do was sleep. I did still go to work but only for two days a week, and that was only Tuesdays and Thursdays ! My boss was very understanding in that he let me take as much time off work as needed and we would sort it all out at the end of it all.
28th May Ė A six month check up with my Urology Surgeon Prof. Kaye. He went through all my notes and after a quick chat as to how thing are progressing with the Radiotherapy treatment he decided that we would meet again in another six months.
9th June Ė Final day of Radiotherapy. A big milestone in my treatment of cancer. Hopefully this along with the hormone tablets and the hormone injections have killed off any remaining cells that were left behind after the operation. Only time will tell.
I have now to wait until the 22nd of July for another PSA test to see if all is OK and then a review by the Radiotherapist on the 5th Aug.
Itís now the 8th July and I although I still feel a little tired I believe that that worst is now behind me and that from here on life must only get better. ( I could not have got much worse). I am now going to tackle the problems of Impotency, I would dearly love to try out the Viagra pill but as of yet it is not available in WA so I think that I shall have to try again with the injections but this time with Caverject.
I have since tried the wonder drug Viagra and it was for me a total waste of time and money. There was no response at all so I have reverted back to the Caverject Injections. Although these may appear to be a bit of a hassle they work about 90% of the time and until I have enough money and nerve for the implant I am staying with these.
In late Oct 1998 I started have pains in my lower pelvic area so it was off to the doctors again. This time I was referred for X-rays. These all proved OK and after a few weeks the aches disappeared.
The new year appeared to get off to a good start but February we got some bad news. I went for a routine PSA check and it is now 1.2 and rising. It should have stayed at around zero !
My doctor sent me for a Bone Scan again but it came back negative ( Good )
I repeated the PSA test again just to confirm the first one and achieved the same result of 1.3
On the 3rd March I had an appointment with Dr. Joseph the Radiotherapist who decided the things were not a they should be and has arranged a CT Scan and another PSA test to be done. He also discussed the possibility of hormone therapy saying that there was a chance of a program coming up shortly and would see if I would like to participate in it.
After another CT Scan and further PSA tests it was proved that the cancer has started to increase but nobody can decided exactly what to do next as it is too small !
I had further PSA tests in April and May with the level rising every month to a high of 4.5 at the end May. The hormone therapy trial that was mentioned earlier was still out of reach for me as my PSA was not high enough and also there was not an 18 month gap from when I last took hormone therapy. I decided that it was time to try something completely different. I researched a few books and papers about alternative herbal and natural medication and came up with a shopping list of the following products :
CATS CLAW 1000mg - 3 times a day
EVENING PRIMROSE 1000mg - 3 times a day
ZINC + C - twice a day
SAW PALMETTO COMPLEX - 3 times a day
VITAMIN C 500mg - 4 times a day
All these I dully took for the next 2 months , I thought ,well they had better do some good to my health as they were certainly hurting the hip pocket. The total cost over the 2 month was almost $200 so you can imagine my shock when I had a PSA test done in early Aug 99 only to find the level at 7.9. Not only had the alternative medicine failed but the PSA was rampant.
Two years after original operation
Early Oct 99 I had further tests done in preparation for a new hormone therapy trial. This included a Bone Scan , a CT Scan and a load of blood tests. The results of these tests proved to be devastating ! The PSA was now over 25 a huge leap from what was expected. The CT Scan also showed that the cancer was in a lymph node deep in the groin. After picking myself up from the floor we discussed what steps would now be taken to stop the spread . It was agreed that I would start the new hormone therapy as soon as possible. This meant that I was to see a psychologist and under go an evaluation as the hormone therapy can cause memory loss and effect the quality of life. The evaluation with the Psychologist involved numerous memory test with number series and word association this I thought was rather fun compared with all that had happened recently. The tests were repeated a week later so as to establish a " Base Line " for future reference as these tests are going to be repeated every 4 weeks while I am on the hormone therapy to see what if any effects there is on my memory.
As of 14 Oct I am now on Flutemide tablets 3 times a day and a 3 monthly injection of Lucrin Depot this is to continue for the next 6 months at least or until either I have had enough of the side effects. Only time will tell.
Mid Feb 2000.
I am 5 months in on the intermittent hormone treatment, thankfully the unpleasant side effects are very minimal this time around so for the time being I am sticking to it. I only have another 4 months to go and I stop for 3 months or until my PSA goes too high. The memory tests that are being carried out at 4 weekly intervals are going OK and I do not appear to have a memory loss. My quality of life also appears to be very good at present and everything looks bright for the future. There is of course one major down side to all this treatment and that is that my libido appears to have been blown completely away. This was to be expected but it hoped that once treatment stops that it will return !
Recently I have been looking into the effects that Liquorice has on testosterone. According to the information that I have there is evidence that eating some every day will decrease the testosterone levels. I am still to find out what effect if any this would have on PSA but I think it would also reduce it or at least slow down the rate of increase. There are links to this information on the top of the page if you are interested. If any body has any more information on this I would be very interested to hear from you.
The six monthly check up with all the Specialists and Psychologist went very well and it is expected that after 3 more months all treatment will stop and I will be back to " Watch and wait " to see what happens to my PSA which at present is <0.1. Everything is going very smooth indeed.
DISASTER - That's about all I can say
To - day was my birthday and we had a few friends over to celebrate the event, naturally we had some nice food on the BBQ and some beers. All was well until the guests had gone and we had tidied the house and were just about to retire to bed. All of a sudden I had strong stomach pains in my right side. My wife suggested that it was just too much food and booze and it would go shortly. After a couple of hours the pains were much worse so in the middle of the night we were off to the Emergency Dept. of the local hospital. Initially they too believed it to be " Over done on the food and booze " but soon realised it to be something more serious, yes you guessed, Gallstones !
They gave me some painkillers and tried to make it more comfortable until the morning when a surgeon examined me and he also suggested Gallstones. Unfortunately as it was Sunday there was nobody at the hospital to work the Ultrasound machine so I would have to wait until Monday for an examination.
On Monday the full Ultrasound examination did indeed show a gallbladder full of stones.
As I was in a public hospital the Dr. indicated that as this was not life threatening there was a waiting period of up to 6 weeks for an operation to remove the gallbladder. Luckily I have private medical insurance so the same surgeon said that he was able to do the operation tomorrow at a different hospital. I was allowed home and told to go to the other hospital tomorrow for the operation
and I was booked into
Well its Easter Monday and all is well and I hope to get back to work on Wednesday.
It's been some time since the last update so bear with me whilst I get back into it.
By the end of April all was back to normal after the Gall bladder operation and things appeared to be on the mend as the PSA was still down to less than 0.1. and I was feeling quite well. Both Bev and me have been regulars at the local gym since January and what with a "low fat" diet we both were losing weight.
The nine monthly "On Treatment " check up with all the Specialists and Psychologist in early June went very well and it was decided that all medication was to stop. We would now wait and see what would happen over the next nine months. Is expected that my PSA will slowly increase as the effects of the medication wear off.
Early Sept 2000 I was back at the hospital for the 3 months off treatment check up. All is going very well indeed with the PSA still less than 0.1 and my general health in very good shape even my libido appears to have remembered what it is all about. I have now lost over 20Kgs in weight and still a regular member at the gym with the diet still just about in place.
Early Dec 2000 and it was time once again to pay the doctors a visit and get all the results of tests done after 6 months without treatment. Bad news this time the PSA is back up to 8.5 much higher than the 2 or 3 I had expected. It was a bit of a blow as I thought that with all the hard work I had done in getting back in shape and losing all the weight I may have started to win the battle of the PSA but I was wrong. There is not much that we can do about it so I am going to wait until next March which will be 9 months "off treatment" and review the situation. I will then decide if I wish to restart medication or not.
The 9 months "Off Treatment" visit to the specialist was a complete shock to both Bev and me. We both knew that my PSA would rise but had no idea that it would reach the dizzy heights of three figures !! It came back at 104. To say we were stunned would be an understatement, even the specialist could not really believe it. He suggested that I have another PSA test done straight away to see if the first one was an error. Surprise ,surprise the second test came back lower, not much, but a low 78. It was now plain to see that I would have to go back on the hormone treatment to try and bring down the PSA. We all agreed that it would be the best course of action so I was started back on Flutemide tablets and a week later the first of three monthly Lucrin Depot injections. I will go back to see the specialist in early June. Hopefully by then the PSA should be back under control.
After a couple of weeks I had just got used to the side effects of the treatment and life was almost livable again when another disaster struck. My mother who had been unwell for a while passed away. I've lost both parents in the past four years, about the same time that I have been diagnosed with Prostate Cancer. Things can only get better from here on, I hope !
I have had quite a few "bad days" over the past few weeks due to the side effects of the hormone treatment I suppose. Several times I have felt very depressed and all I wanted was to be left alone. I found that Bev was a great help during these times with out her I don't thing that I would have made it quite so well. I also am always hungry and of course this has started to increase my weight from the high 80's , I'm now in the low 90 Kg bracket no matter how much exercise I do . I am determined that it will not go up over the 95 Kg mark ! It's now late May and have just had all my blood tests completed after the 3 months on treatment period. We just have to wait and see what results are forthcoming early next week when I go and visit the specialist.
I realise that it now a year since that this has been updated but not too much has happen except that my weight has slowly been increasing and is now back up too 100 Kg ! must try very hard to get it back down to below the 95 Kg target.
As for the PC well that appear to still be ď under control Ē as I have been on and off treatment and by taking the medication the PSA will still respond by falling during the on time and rising during the off time. I am due to a 6 month on review in mid May.
The visit to my specialist in mid May was a bit of a shock, we had to see his registrar who was not quite familiar with my case. He saw that the PSA had risen to 6 which was quite a nice surprise for us as we where expecting 10-15 ! He had different views, he wanted to restart the hormone treatment and have a Bone scan done as soon as possible, all this was quite an unexpected response but he was quite adamant. I had the Bone scan done a few days later and had to wait another few days to see this doctor to review the results. The results showed a small shadow on one of the lower ribs, this could mean that the cancer is in the bone. There was no conclusive evidence but it was definitely not ď all clear Ē. He asked me to for another PSA test to confirm the last one and to come back in a week.
June 4. This time I managed to get to see my normal specialist who informed me the PSA was now 15 and that he too was concerned about the shadow from the Bone Scan. With all this news the only thing to do was to restart the hormone treatment as of to-day . We then made an appointment to review all this in 3 months time. Hopefully by then we should have it all back under control with the PSA back down to zero !
Three months ďOn TreatmentĒ revealed the PSA was back under some control , well almost. It was down to 0.3 which in itself was not too bad but in previous times it was zero . the specialist confirmed that this was an OK reading and was told to come back in another three months.
Another three months down the track and the PSA is starting to rise further, this time the reading was 0.6 . We were not quite expecting this and it took us a bit by surprise. It was decided to repeat the PSA , this was done but with the same results. It was also recommended that I see my GP regarding my high blood pressure as this was 160/100 . I have had a reasonable high blood pressure ( 140/90 ) for some years but this was higher than normal. As a result of these latest tests it was decided to redo the PSA in 6 weeks and not wait for the normal three months.
A visit to the GP still recorded a BP of 160/100 and it was decided to commence treatment using Norvasc. I also mention to him that I had had quite a shooting pain down the left hand side of my face for a few weeks and he suggested that it might be Neuralgia and to keep an eye on it . He would need me to return in three weeks to see the effects.
The new year did not bring any good news . A return to the GP still revealed a high BP and the pains on the side of the face were still there. We decided to make an appointment to see a Neurologist to get a better idea of these pains. This was arranged and the diagnosis was ďmost likely TNG Facial NeuralgiaĒ. It was decided that a visit to the dentist may shed more light on the subject so off we went for more tests. I had an X-ray taken of my face which was presented to the dentist and he also concurred that it was most likely TNG . Well , what can we do ? It appears not much but try and live with it !!
Some pain killers work and if you ignore it sometimes it will go away. The jury is still out on that one !
I am due to see my Oncologist specialist in a few weeks so will try and get more info on this and hopefully the PSA and BP will be down
On the way to work to-day some very inconsiderate woman driver decided she would exit a side road in front of my car !!†††
Bang†† Crash !!††
My car a write off !!†
Her car, badly damaged if not a write off too
ride to the hospital in an ambulance was quite nice except I felt every bump in
the road due to one broken and two cracked ribs. I had to stay over in
The blood pressure seems to have leveled out at an acceptable 140 ish over 90 ish so we will just keep it monitored as they say.† The PSA still an area of concern as in rises quite rapidly when I am off treatment and is not getting to zero when on treatment. Guess we had better get ready to try an alternative treatment
Well another year has pasted without too many updates . Life goes on too quick to keep track of everything and time is precious.
The last six months have been quite uneventful really with just the regular trips to the hospital to see the specialist and the general pill popping etc.† My PSA goes up and down according to the treatment and as they say things look fairly reasonable. Still a little concerned about the apparent ineffectiveness of the current treatment as it does on have the same effect it used to have.
The TNG appears to have disappeared for now for some reason and everything is just rolling so we are back to watch and wait† to see what happens
An old Ex RN Buddy Lenny has come over to
The next day I had to go to work . As the day progressed I was becoming very short of breathe and by late after noon was finding it very hard work to get around due to lack of breathe. As soon as got home I asked Bev to drive us up to the doctors. He took one look and said ď Go to the Emergency Dept at the hospital ď
We got to the hospital and were admitted into the ER . Within an hour or two it was diagnosed I had a pulmonary embolism† !!
I was to stay in hospital for a week and am now on Warfarin for the rest of my life to try and keep my blood thin. ell thatís another blood test I have to have on a regular basis , my arms are getting like pin cushions now
After a year or more of the effectiveness of the Lucrin Depot and Flutemide being questioned the decision was made to change to a different group of hormone medication.
To establish a starting level it was decided that I was to have a full blood test, bone scans and a CT Scan. Well the results came back. The Blood Test were OK as was the CT Scan but the Bone Scans revealed, as expected, an increase in the level of Bone Metastases where to cancer has stated to attack the bone. The new medication was started in May and comprised of† Cosudex tablets daily , a 3 monthly injection of Zoludex and a monthly IV Infusion of Zometa. The monthly infusion takes about 20- 30 mins and is quite painless you are just hooked up for a IV drip and lay back and wait !
As of mid June I do not really know what the effect of this new treatment is as it will take a few months to get to work within my system but touch wood I have very little side effects from this new treatment.
am due to see the specialist in early July just before Bev & I depart on
our 25th Wedding Anniversary World Tour . Will do another update on
Well back after an absolutely magic trip around the world . Caught up with a lot of old friends and family as well as visiting a lot of new places. Full details of this trip along with some photos will soon be add ed to this site.
Anyway I visited the specialist† and the bad news continues. My PSA is still rising ( up to 40 ) and it appears that the cancer has become hormone tolerant is progressing in the bones. I can feel a lot of aches and pain in my shoulders and upper back and the specialist is concerned about this. To see what is happening we have booked another bone scan for a couple of weeks time . From the results of this we can then work out what to do next.
The options are at present:
I suspect we will look at option 1 for a bit and then 2 . I am not looking forward to option 3 !!
Anyway enough for now , will update soon
Surprise , surprise† the tests came back not quite what we wanted. The cancer in my bones has progressed further than was expected and this along with the fact the PSA is now 71 prompted the specialist to stop all medication.† We are to see the medical oncologist in a few weeks to discuss the options involving Chemotherapy.
Well we trudged back to the Oncologist fearing the worst and she advised us that although there was indeed some uptake into the bones and the PSA had risen to 99 there was really no need to start chemo yet !!.†† Much joy and happiness was spread around. She advised us that we may as well stop all medication except the infusion as it was clear that the cancer was infact hormone intolerant.
I still had to have my infusion done so it was away to radiation ward to get this done, whilst we there we saw Dr Joseph and explained the whole thing including the fact that I had a fair bit of pain in my side. This was diagnosed as a cracked rib! So he arranged a quick super dose of Radiotherapy that cleared it up in a few days.
Still just having the monthly infusions feely quite good at present so hopefully it should stay this way for a while
Trying a new approach to fight this, Melaleuca products. Started on a course of tablets and will stay on them for a 3 month trial to see what difference it makes
For full details see†† http://www.melaleuca.com/
If I donít get to write again I wish you all a very Merry Xmas and a Happy New Year from both Bev and I
2006 A New Year
Well another year is upon us , we wait to see what surprises it will bring.
The Melaleuca products had quite an adverse effect even after a month . It totally upset my IRN this went from a steady 2.1 down to 1.5 and shot back up to 4 , so it was good bye to that† !† It also had an effect on my blood pressure causing a bit of instability there too.
Saw the Oncologist in Jan for the Zometa infusion and check up, all appears OK with the exception of the PSA which was 280 but now in Feb it has increased again to 360 + . It doesnít look as thou it will come down for a while, so we had better try something else.
Tragedy struck yet again on 25 Jan when I couldnít get out of bed because of a bad back pain and stomach cramps.† I lasted until lunch hoping that it would go away but I gave in and Bev took me to the local GP who in turn directed me to the Hospital. Here we had a Cat Scan and a few blood test to diagnose appendicitis !!!† Later that night it was removed . I left hospital on the 28th and had to have a week off work ( shame ). All appears to be healing well at present .
Have further appointments with both Radiotherapy and Medical Oncologists in early March to discuss further treatments and a possibility of a medical trial.
Back to the hospital to-day for my monthly Zometa infusion , that was the easy bit. Next it was an appointment with the Radiotherapy Specialist† to discuss the next step.† After viewing the CT scans taken in Jan 06 he agreed that the lymph nodes in the lower abdomen were in fact getting larger and would cause some problems later if nothing was done. My PSA at present is just short of 500 so it was suggested that I not have any more PSA testing as it would be a waste of time. He indicated that I may need Radiotherapy but as I had an appointment with the Medical Oncologist later to-day he asked me to come back and see him after I this appointment to see what her opinion was .
We saw the MO and she is of the opinion to do nothing at present but to ď Watch & Wait ď , chemo was not an option as this is really a last ditch ďOne ShotĒ treatment after all others have been tried. The MO was against RT as it would damage the bone marrow and this would in turn cause problems later with chemo and that RT may damage the kidneys . She also advised us that I was not ill enough to have chemo yet !
Gee we were getting very confused with conflicting treatments
Back with the RS we discussed what was said with the MO and come up with a plan to have another CT Scan in a few weeks to see the increase in any activity and then start on a course of Radiotherapy .
Woke up this morning a little stiff neck , thought nothing of it and off to work as normal. I still had the stiff neck when I come home after work and once I had taken my shirt off the reason was plain to see. I had a large swelling in the front of my collar bone and left side of my neck, off to the GP. My GP advised that I get this swelling checked out and I was to go for a CT Scan , Ultra-Sound and X-Ray of the area.
Having had these scans done the next day it was back to the GP with the results.
Well my GP could not have given me more bad news if he had tried when he announced that there was little he could do for me and I had better get back to my Oncologists as soon as possible to arrange some treatment. The cancer had advanced quite clearly into the Lymph nodes in the left side of my neck and shoulder. Action was needed to try and stop this getting any worse
We managed to get an appointment to see the Radiotherapy Specialist and he agreed that a course of Radiotherapy was the best course of action . He has arranged for a 10 Day course starting 3rd of April after which it will be reviewed and if needed a further 10 days will be in order.
This treatment is on top of the 30 Day course of Radiotherapy already planned for May.
We are off to the hospital on 29 March to do some planning scans, get marked up with tattoo and sort out all the details of the forthcoming RT.
I can see Iím going to look a bit suntanned before long !!
After a very bad weekend with terrible pain in my shoulders I went back to my GP. He explained that basically he was limited the amount of painkillers he was able to give but would give me his best shot. He would give me some but I would have to contact the hospital and get some better medication from them. I tried the new painkillers this Monday and it made a lot of pain go away and at last I was "pain free" for a while.
On weds we went to the hospital to get the planning scans done for both the treatment on my neck and stomach. Whilst we were there we saw the Palliative Care and Pain Management specialists to discus the pain problems.† It was decided that I would try a new medication in the form of slow release morphine patches along with some liquid Hydromorphone to take in times of "need ".† As of to-day this appears to be working fine , only time will tell.
I start radiotherapy on my neck on Monday for 10 days then have a break till may.
Hopefully the RT will blast some of the gremlins away and I donít have to have all this painkiller stuff.
One can only hope.
Feeling a bit better now that something is at last getting done and the pain is under control again , lets see what the weekend brings.
April / May
Well once again things have slipped by and I have not update this page quick enough.†
The RT on my neck went well and I only had some mild discomfort in the form of a sore throat and some yucky tastes in my mouth that we managed to sort out with some more medication.
During the treatment of my lower abdomen I had a lot more pain in my right thigh and it escalated to the point were I was admitted to hospital at 1 in the morning as the pains were so intense.† In hospital they conducted more CT scans to find out the cause, ( of course we all know the answer ) . Also as a result of this the Palliative Care people adjusted the pain medication to Methadone and some other drugs to try and get me back pain free.
By the middle of May things started to look up for a while , I was pain free and I had all my recent Bone scans and CT Scans and was starting to get back on track with things in general .
At the end of May we went back to see the RT Specialist and discuss these scans. The results were not as good as we had thought they might be. The cancer had got a bigger uptake into the bones and it clear that RT alone was not the answer. The Specialist told us that Chemo was really the best course of action and we should see the Med Oncologist next week to see what her reaction to the scans are.† We agreed that I should have some more RT on my thigh as the bone was getting fragile and we could not afford for this to break !
It appears that Chemo along with all its funny side effects is the only way to go so lets go for it !!
Chemo it was then.† We decided with the Drs that we should postpone the Radiotherapy for the time being and try this Chemotherapy, this way we are starting to treat the whole body and not just some small areas.
I had my first infusion of this chemical mixture called Mitozantrone to-day, no different that any other infusion I have had except this was a bright blue liquid!† It caused quite a conversation piece in the treatment room along with the patients who where also having their chemo treatments.† The nurse told us all about it and the expected side effects of nausea and sickness with possible other aches and pains. This was just what we needed to hear after a not too good a long weekend where we had had quite a lot of pain in the thighs again and had to call on our friends at Silver Chain for some extra injections of Morphine to get rid of the pains. This infusion treatment was to last for 3 weeks and then we have some more blood tests to see what results have been achieved so that the hospital can adjust the dose for even more effect.
Since having the infusion things appear to be on the up.† I have started to feel very good in my self even though I did have a little bit of upset stomach and nausea on Sat that I hope is behind me and the future is starting to look a lot better. I have had a week with no pain and only a bit of tiredness which I guess is due to the amount of tablets etc I am taking at the moment.
After 6 weeks of chemo and very few side effect we had our check up with the medical oncologist.† All appears to be OK with life for me starting to return to normal. No pains and I am slowly reducing the amount of pain killers and other tablets.† Hopefully we can get the tablets down to a bare minimum shortly as I donít really like taking too many tablets. The Dr want to continue chemo for about 6 months and have a bone scan in about 3 months to see what effects all this has had.
One small thing that is starting to cause concern is the swelling on the right side of my neck / shoulder in the supraclavicular region . This is common site for lymph node metastases but the Dr just says that we can keep an eye on it to see if it gets worse† it will not cause too much harm.
In myself at present I feel really good and hope that it continues to be so . I can only think POSITIVE .
Come late September we had finished the six infusions course of Chemo and were feeling very well with very little† pain in the thighs. We continued to have regular trips to the hospital to see the Medical Oncologist and had various blood tests to make sure all was well.
In early November we had a bone scan that revealed a few new hotspots in the legs and shoulders but in the sternum the cancer appeared less aggressive. The Oncologist was happy to stop the chemo providing that any pains were under control.
In late November I started with severe pains in my upper thighs, it could be either the left or right or sometimes both. This pain would come on without warning but mainly in the evenings.† We used Silver Chain several times to assist in the pain management.
During most of November I experienced several ď Bad Days ď when I had severe pains in both the left or the right thighs. I called upon the services of Silver Chain 4 or 5 times to assist in the relief of this pain whom managed to sort it out and get me some relief. What I would do without these people I am not too sure but I am glad they are around.
I also had some rectal bleeding and my GP arranged a Colonoscopy which revealed all clear.† This was the only bit of good news I had had for a while.
Weekend 1-3 Dec
week was extremely bad as the pains in my thighs became uncontrollable. So
dosed up on medication I had know idea where I was or what I was doing. We
decided that on Monday we contacted† Dr
Tandon ( Pain Management Dr ) and told him that we had to see him that day. He
saw us and advised that he could not deal with me as an outpatient any longer
as the pains etc were too severe. He told us that I should be admitted to a
Palliative Care Unit.. We were both devastated at this news but knew that it
would be the right decision. We were given the choice of either
5 Dec Ė 25 Dec
Admitted to Glengarry PCU with acute pain in both thighs. Introduced to the staff that was led by Dr Larry Liew
Sat down and worked out a pain management plan with Dr Larry comprising of Methadone, Kettermine and other drugs. The pain was brought under control again for about a week !
I stayed in Glengarry until the 18th when the pains had got slowly worse and taken down to SCGH under Dr Tandon. He suggested that the Strontium 89 Infusion would be the best bet but because they could not fit it in till mid Jan we decided on Kettermine Lozenges and increase the methadone. With all this onboard I was discharged on 22nd and told to go home.
That evening the pains returned and Silver Chain were called, they stayed for over four hours until they got me settled and asleep, only to return the following morning as pains back again !!
Silver Chain had done all they could do the only option was to get me back to
hospital again. This time I was in
XXX† 25 Dec Xmas Day† XXX
The worst day that I have ever had for pain. I was awake about 5 this morning with pain in the thighs this increased to a level of 12 out of 10 !! it was horrendous. The nurses called Dr Larry and he came in and he along with the nurses tried all sorts of measures to decrease the pain, they even called in a midwife and her special Entonox gas.† The Dr and nurses refused to let anyone see me except Bev , they would not even allow Liam or Nick in to see me. I was going to have an epidural inserted but because my INR was too high (2.4) and could cause bleeding the doctor refused to do it.
By mid-day they had managed just to get the pain under control with Methadone, Kettermine and other drugs. They also put me on vitamin K to try and bring down my INR
To-day the doctors decided that my INR (1.8)† was low enough to have the epidural fitted so he went ahead and inserted it.†
Bev , Liam , Lesley and Nick all came to see me and we had Xmas day to-day. They had all brought in their Xmas presents so we started opening them creating a huge mess all over the room . We all had great time and hoped that I would soon be able to come home.
came to visit this morning but as I had a fair bit of pain overnight I was
going down to
Transferred back to Glengarry Hospice so Dr Larry could see me easier and it was better for Bev and the boys in not being so far to travel to see me.
Still in Glengarry and it looks like I will be in here for a while until things settle down.† Bev came in later to-day and stayed for the afternoon and evening so we could have a ďPicnicĒ in my room with chip and dip and a beer !!† to celebrate New Years Eve.† Very nice, pity it was in hospital.
2007 A New Year††††† Lets hope a better than the last one
The start of a new year. My goal is to get to our sons wedding in less than a weeks time and then focus on a return to work albeit part time. Dr Larry and I have different views on this so I think a compromise is looking good.
To-day was my
eldest sons Liam wedding and I was not going to miss this for anyone. Bev Picked
me up from Glengarry mid morning and took me home where she and a few others
were getting ready for the big event. After lunch at home we all made our way
to Hansons in the
Soon it was time for me to go back to Glengarry and a well earned rest.
After the excitement and everything yesterday a day resting was on the cards, I was very tired and spent most of the day sleeping.† The pain appears to be under control.† Dr Larry has said that if we can keep the pain under control for the next few days then he will think about letting me go home but first we had to try being home for the odd hour here and there to see how we go.
Today I get to go home for a few hours, Yes!! As I canít walk too well it was decided that I would use a wheelchair.† That brought itís own problems. We had to hire a maxi taxi to get me home and then we had to negotiate the front door.† Once indoors we decided using a walking frame was going to be easier.† But I was home, I got to see my dog Chloe, sit outside under the patio and look at the garden. It was wonderful but the time went far too quickly.
long last I was going home for good after nearly 6 weeks in Glengarry, SCGH and
Appointment with Nuclear Medicine Dept at SCGH for an infusion of Strontium 89 .† A radioactive isotope that will help with the pain control . It is not a cure for the cancer but will hopefully ease the bone pain. More info on this can be found at† †http://www.medicineau.net.au/clinical/palliative/strontium.html
This was a simple injection in my arm, quite an anti-climax after all the build up to this. Lets hope that it will continue to control the pain as at present I am in very little pain.
Started to get leg cramps along with a bit of stomach nausea which caused a bit of concern. These disappeared as mystically as they appeared. At the needle change on 22nd Feb the port area was still very inflamed and Silver Chain wanted to start some antibiotics . I also had a Lumbar spine CT scan done to see what may be causing the cramps etc.
Armed with the results of the scans Dr Larry came up with the following :
Start some antibiotics to fight the infection.
Increase the Omeprazole to stop the nausea.
Stop work for a week so that I can get some rest.
Still getting very tired and a bit of pain in my legs but the nausea had stopped . I have started with excessive sweating again but the temperature is quite high as is the humidity so hopefully this is short term thing.
Changed from a 100mil CADD cassette to 250mil one great idea but it is very difficult to fit in the bag !!
Having to use several boluses due to pains returning in my right arm and left leg , it seems that the pains wander around my body looking for some where to go as they are in different places every day.
Admitted into Glengarry Hospice with pains that were uncontrollable.† CADD pump outputs adjusted to give high outputs in a effort to control pain.† Dr Larry told me that I would be staying here for a while so that we can try to find where this pain is coming from.
Still in quite a bit of pain but had to go to Hollywood Hospital for a Heart Scan, Bev drove us down in the car as an ambulance would be too expensive. During the scan I fell asleep !!!† and it took Bev a while to wake me.
Very bad night with extreme pains early in the morning. Hospital phoned Bev at 0800 and told her to come in as I was still in extreme pain in both legs , head and neck. By the time Bev arrived the hospital had put me on oxygen to help with the breathing. Larry phoned Bev and told her I was going to have a CT scan of my head and chest in case he had missed something.. I started to deteriorate and by 1600 Bev was told to get the boys in to discuss the next move. It was decided that I would stay at Glengarry and be sedated until I went one way or the other. Dr Larry thought that I would not make it through the night. Bev stayed overnight on the recliner chair in my room just in case.
Woke up about 0700 with no pain and asking for breakfast† !!!!!!!!†† All the hospital staff including Larry were totally amazed at the transformation from yesterday to to-day.
Started on Cosudex tablets and had a Lucrin Depot Injection along with a Zometa infusion . Had a bag change on 3rd and a needle change on 5th . Port area was much better than before with no sign of infection , at least something is going right !!
Went home for the afternoon on the 6th but it must have been too early as I was back very tired and generally not too well. It looks like my birthday will be in hospital too.
My birthday, yes we are still in hospital, Bev came over early and I opened some of my pressies including a Goodie CD T-Shirt and a cottage for the train set .† In the afternoon several other people came over and we had a great time outdoors on the patio, but all good things had to come to an end and by early evening things got a bit chilly so we all called it a day and looked forward to Xmas in July.
I was given the all clear to leave hospital until Dr Larry came around and for some strange reason decided that I needed a Doppler scan ( Ultra Sound ) of my very swollen legs and left arm. What a good job he did , they found a blood clot in my neck on the left hand side. Armed with this Larry cancelled my discharge for another 24 hour.† Larry stopped the Warfarin and now I have to inject myself with Clexane.
Home at last !!!!!!!!!!!!!† Now time to restart life and get on to enjoy retirement !!!!!
Hi everyone, this is Bev and I am writing the last of these pages on behalf of Alan my husband, who after such a long, hard, fight lost his battle against Prostate Cancer on Sunday 27 May 2007. †
Alan spent many hours writing his diary, it gave him a chance to put into writing what he was feeling and thinking, when sometimes it was just too difficult to say.† He also kept his diary in the hope that if it helped even one person, then it was worth the many hours he spent on the computer.
This is very hard for me to write, but in honour of Alanís memory his story needs to be finished.† I may waffle more than Alan did. ( that was Alanís word for my style of writing) but hopefully it will give you an idea of just how hard he fought during his last few weeks.† Some comes from Alanís diary that he wrote each day but as Alan became sicker he stopped writing and the last 10 days are from what I remember.
Alan had a reasonable nights sleep but needed 3 boluses to get up out of bed.† He also had a thumping headache, which was unusual as headaches were something Alan didnít normally get.† By 9:30am he was feeling much better and apart from both his legs and groin being quite swollen from fluid retention the rest of the day was reasonable.† He didnít feel too bad but he also didnít feel great just couldnít put his finger on what was wrong.
Alan awoke at 5:30am with pain in his legs and feeling really crap (his description). As well as the pains he was quite short of breath and even just getting out of bed left him feeling very tired.† I phoned Glengarry and was told to bring Alan in as his Dr, Larry wanted to check him out.† Alan was readmitted back into Glengarry where blood test were done.
It was found that both his red and white cell counts were very low.† That hopefully would explain why he was so short of breath and feeling so tired.
They managed to get 1 unit of blood into him this evening
A CT scan of Alanís lungs was done just to check that there were no clots in his lungs, because of the clots he had in his neck they were worried incase the clots had moved.† That luckily came back clear.
Alan was given 2 more units of blood hopefully he would start to feel better soon.
May 4th Fri
Today we went and saw Alanís Medical Oncologist,† Simon Troon and received some results from some scans he had ordered.† The results were not too good, although partly expected.† They showed that there were more ďhot spotsĒ in Alanís bones, in his legs and even a few on his skull also that the lymph nodes in his stomach were affected too.
We decided that the best thing to do was press ahead with the Chemo and the Zametta and hopefully get on top of things.
After treatment Alan was quite tired so we went straight back to Glengarry so he could have a sleep.
May 5th Sat
Alan had a good nightís sleep so† Larry had said if all was OK† he could come home for the night and go back to hospital on Sunday afternoon.
We pottered around the garden, Alan checking I was still looking after the birds, fish and the garden.
About 3pm Alan started to get shooting pains down his right arm.† First we tried the heat packs and then the Ĺ tablet of Methadone, followed 30mins later by another Ĺ tablet of Methadone.† The pain wasnít easing at all so I called Glengarry to ask for advise.† Alanís Dr, Larry was there so said to come back in so he could check Alan out.† By the time we got there his pain score was 6-7 with shooting pains going up to 10.
They gave him a Ketamine injection for the pain and also a sedative to help settle him, as Alan has always said ď let me sleep and hopefully the† pain will subsideĒ
He slept for the rest of the evening and right through till 5:30 am.
May 6th Sun
Alan woke up with pain in his right arm but not a severe as the night before. But as the morning went on the pains became more severe so Alan was fitted with a 2nd pump which had Ketamine in it.† He wasnít too happy about the 2nd pump but it did help easy the pain and that was what he needed.
May 8th Tues
†Larry called in Anil Tandon
the Pain Management Dr from
May 9th Wed
Alan woke up early with pains down both arms and a throbbing headache with shooting pains going down the back of his neck.† He was fast asleep by the time I arrived at 9am and slept through until lunch.† His head was still very groggy, but after lunch I took him for a walk in a wheel chair to see if fresh air would help.† It didnít really so he went back to bed and he slept through until tea time.
May 10th Thurs
Alan had a reasonable sleep and awoke with no pains Yes!! So after lunch I was allowed to bring Alan home for a few hours.† He pottered with his train set and played with the dog, Chloe.† A lovely, relaxing day after the last few rough days.
May 11th Fri
Alan had a good sleep and awoke with no pain again.† So allowed home for the morning.† After lunch we called at
Alan had had 2 days pain free so things were starting to look up.!
May 12th Sat
Alan didnít have too good a nights sleep and needed 1 bolus for a pain in his right thigh.† He also had an ache in his right shoulder, arm and elbow.† But after some breakthrough medication and a hot shower everything settled down.† He was feeling much better so was allowed home for the weekend.
We got home mid morning and just pottered around the house.† After lunch Alan had a sleep for a couple of hours and that recharged his batteries.† For tea Alan requested sausage, scrambled egg, chips & beans.† Which we had although I thought steak would have been the order, but he really enjoyed it.
The rest of the evening we just relaxed and watched TV and indulged in a yummy plate of chip & dips etc.† It was a lovely day and Alan being home and not in pain was wonderful.
May 13th Mothers Day
Alan woke 1st at 3am and again at 5am this time with pain in legs and right arm.† I tried the heat packs and the methadone break through but it didnít seem to touch the pain and when the head ache came back at 6:30am I knew that there was nothing more I could do.† So I phoned Glengarry and told them I was bringing Alan back in.
Glengarry is only a 15-20 minute drive away and by the time we got back there Alanís head was throbbing a pain of 8 out of 10.† He was also extremely thirsty and drank a full jug of water within 30 mins.
They gave him as much breakthrough as they could and a sedative to help him sleep.† This it did until mid afternoon when he awoke pain free but very drowsy and very upset as he had made arrangements with the boys to have a nice tea to celebrate Mothers Day.† I just wanted Alan pain free and wasnít worried about the meal, both boys and their partners came to the hospital to see their dad and give me my pressieís and that made Alan feel a bit happier.† We arranged to have the meal when Alan was back at home.
May 15th Tues
Alan had quite a disturbed night awake at 01:10, 03:30 and again at 06:15am.
Alan was feeling very cold and wondered if that could be causing his pain but,† Dr Larry† didnít think they were connected.
His head was still aching and he was still very thirsty so they gave him a Ketamine injection and the pain settled down.
†Larry decided Alan was to
have an MRI Scan done just to see if there was something that hadnít shown up
on Alanís earlier scans.† We had a maxi
taxi up to
May 16th Wed
Another bad night 04:00 and again at 6:30am and then I woke Alan up at 7:30 with a phone call to see how he was.† He had pains in both legs his arm and a huge headache.† They gave Alan Ketamine to control the pain and† Larry decided to reduce the Clonidine in the Cadd Bag to see if that was what was causing the headaches.† As we couldnít get the MRI done another CT of Alanís head was done just incase it showed something.† It came back clear and that was good news, but it was frustrating for everyone as to why Alan was getting such severe headaches especially as he never normally got the.† Hopefully changing the mixture in the Cadd Bag would help.
May 17 Thurs
Alan was awake a couple of times during the night with aches and pains mainly in his legs, had a 3 boluses and managed to drop back off
When he woke at 7:45am he had a huge headache and pains in both
legs again.† He was given a Ketamine
injection and Diazepam (Think thatís what it was) to help sedate him and
hopefully sleep off the pains.† He slept
all morning and dropped off again after lunch so I went down to
May 18 -22nd
During these few days Alan slept a lot, his legs ached and his head aches varied between just a dull ache to thumping.† He lost a lot of his appetite which for Alan was unusual as he loved his food. He also had a queasy tummy again unusual and this is probably why he went off his food. .
May 23 Wed
Today was the first day that Alan actually started to feel really, really† yuck and was even sick a couple of times.† Very, very unusual for Alan and he lost what little appetite he did have. His legs still ached but the headaches were the real worry, as changing the Cadd bag mixture didnít appear to have helped.
Our youngest son Nick & his partner were due to come to the hospital for tea but as Alan was still being sick we cancelled in the hope that Thursday would be a better day.
I think everyone was hoping and praying things would settle down.
May 24 Thurs
This was not a good day.† But by the end of it we knew what was causing Alanís headaches.
During the morning Alan was either sleeping or being sick, which was very distressing for us to watch, it must have been 100 times worse for Alan as by now as he hadnít eaten much all he was bringing up was bile.
One of Alanís nurses came in to let us know that they were going to take a sample of Alanís spinal fluid and do some tests to see if that showed anything unusual.† As Alan had the port in it was fairly easy to get the fluid for the test.† Alan continued to sleep but was very restless.
At 6pm Larry came back into see both Alan and myself, the results from the test were back.† Alan had Bacterial Meningitis.† He was given a huge dose of anti biotics immediately, Larry then explained how serious it was.† I donít know if Alan really took it all in as he was drifting in and out of sleep.† I listened but I really donít know if I fully took it all in either. I knew it was extremely serious but I think I just thought Alan is Alan and he will be fine.† Liam, Nick and their partners were called and asked to come in so they could be told what was wrong with their dad.
I decided to stay the night and Iím glad I did as Alan had bad night.† He was very agitated couldnít settle, couldnít sleep.† Kept trying to sit on the edge of the bed and even tried standing and fell over.† His head was throbbing and trying to keep him laying down was near impossible.† I even tried snuggling in bed with him to settle him down, it worked Ö for about 10 minutes and then he was fidgeting again. (I made a mental note to tell them that a bigger bed would have helped).
25th May Fri
Alan was due to have another round of chemo today but he was far too sick and this was postponed until he had got on top of the meningitis.
Alan was given another dose of anti biotics via an IV drip, which caused itís own problems as Alan kept bending his arm while sleeping and causing the machine to alarm. I told him off a couple of times for bending his arm and he pulled a funny face at me (as if to say stop nagging) it made me smile as the Alan we all knew was still there, just not feeling too good.† He slept for most of the day but did appear calmer as the day went on, sometimes when we thought he was asleep he would suddenly come in on conversations, talk for a few minutes and then doze off again.
†Larry spoke to me about Alan having the intrathecal catheter in and that it made fighting the Meningitis more difficult but the other option, which wasnít an option really was to have the catheter removed.† This would leave Alan without his major pain relief for at least 72 hours while still trying to fight the meningitis. I couldnít do that to him, the thought of Alan being in the huge amounts of pain like he had-had over Christmas, No Way.† So fingers, toes and everything was crossed that the anti-biotics would kick in.
Alan was much calmer and more settled by late evening so I decided to go home and feed the dog, cats etc and try and get some sleep.
26th May Sat
Alan phoned me at 8:10am to say heíd had a reasonable night and that he still felt really yucky but was going to try some breakfast. I said if he was doing OK,† Iíd be in about 10am after calling at hairdressers to get a much overdue trim. (Getting my hair trimmed was the 1 thing I thought I could control)
At 9am I received a phone call from Alanís nurse that I needed to go straight in as Alan had-had a bad turn.† The weather was awful heaving down with rain, it was 1 of the longest 20 minute drives ever.
When I got to the hospital Alanís nurse explained to me what had happened, that he had Ėhad a funny breathing episode (he occasionally got them, where he couldnít get his breath) and that he was not responding to anyone.† Also, what to expect when I went into his room.
†It didnít help I still wasnít prepared.
As Dr Larry was taking his 1st weekend off for quite awhile, Anil Tandon had been called and was on his way to see Alan.
†When I went in Alan was on his side on oxygen, his breathing sounded like a freight train and I just dissolved into tears. I spoke to him, telling him to wake up that the boys were on their way.† I kept talking to him in between the hugs and the tears, every now and again his breathing became calmer but that was the only response that we were getting.
I had been there about 20 minutes when all of a sudden he moved his hand as if to scratch his face and then† opened his eyes and had a huge smile and just said ďhelloĒ, his look said† Ďwhatís all the fuss aboutí.
Just then Anil arrived and checked Alan out followed by both boys & partners.† I went outside with Anil and we had a talk,† again about how serious things were and that taking the catheter out was still not really an option.† I spoke to both boys and we all agreed that Alan just wouldnít be able to cope with such huge amounts of pain and the catheter was to stay in.
During the rest of the morning Alan drifted in and out of sleep and was occasionally being sick.† His head was still throbbing and he didnít eat anything, but by mid afternoon he had started to pick up. He had another IV of anti biotics and he drank a little more and was able to stay awake for a few minutes at a time.† He would be in the middle of saying something then drift off to sleep again, but at least his breathing was very calm and quiet now.† That made me feel much happier.
I decided to stay the night, I wasnít going anywhere until I thought he was going to be OK.
Later Saturday evening two of Alanís nurses asked if Alan would like a blanket bath to freshen him up.† We had such a laugh, Alan was in such a lovely mood and much more like himself.† It really was a lovely evening.
After his blanket bath we settled down to watch TV but Alan soon drifted off to sleep again but was quite settled, even with his IV going
May 27th Sunday
Alan slept right through until 5:30am when he awoke wanting a drink, he soon settled back down until 8am when breakfast was brought in.† He wasnít really hungry but to keep me happy he had 2 spoonfuls of yoghurt & rice bubbles and we shared a slice of raison toast.† He also enjoyed a pineapple juice and even commented on how nice it tasted.
Over the last few days Alan had started to use his Cadd pump a bit more than he had on the previous few days and when we realised that he wouldnít have enough medication to get through until Monday am, one of the nurses arranged for a bag to be ready for me to pick up later that morning.
After breakfast Alan snoozed until about 10am when he decided that he fancied some Gatorade, so I popped to the shops just next door to the hospital and luckily there was a post office too, so I bought 2 birthday cards for our daughter-in-laws birthday the next day.† I let Alan choose which card. He chose the fancy one with the cellophane cover, it looked more expensive he said ( A very Alan comment)
At about 11am our eldest son Liam arrived with some lollies for dad and a change of clothes for me.† We talked about Alanís train set and what he could do to help Alan.† So there was Alan explaining to Liam how to make paper mache from PVA glue and tearing up strips of wall paper to cover the tunnel on his train set.
At 11:30am Alanís sister Marion and brother-in-law Dave arrived and Liam was just about to leave.† Alan was really quite bright and even though he kept dozing off he also kept waking up and joining in the conversation.
I decided that while Marion & Dave were there to keep Alan
company and he wouldnít be by himself that I would pop down to
I gave Alan a kiss and said Iíd be back soon, Liam and I left at 11:45am.† As we walked out the nurses said that they would give Alan another blanket bath once his sister had left and I said I would be back by then.
Both Liam and I said how much brighter Alan looked today than yesterday and that we thought things were looking up. Alan was going to come through
I zoomed straight down the freeway to the hospital, I had a funny tummy on the way down but didnít think anything of it as it disappeared after about 10 minutes. ( As I believe in certain things I now wonder if something was telling me what was happening)† I got Alanís new medication bag and straight back up the freeway to Glengarry.
I walked back into the hospital at 12:40pm putting the meds on the desk and carrying on down to Alanís room.† Outside Alanís door were 2 of Alanís nurses I thought they were going to tell me that they hadnít done his blanket bath as his sister was still there,† but no.† One of the nurses who is also with Pastoral Care came up to me and explained that Alan had stopped breathing and they couldnít find a pulse.† My world just fell apart.† They took me into Alanís room, he just looked as though he was sleeping.† Even through all the tears I was talking to him and touching him expecting him wake up as he had done the day before.
Alanís sister and brother-in-law were with him when he passed away, He was happily chatting and then just went to sleep.† The boys and their partners came in to spend time with their dad and say what they wanted to say and say goodbye.
That Alan had some one who loved him very much with him when he passed away helps, but that I was not there when he passed away has left me heartbroken.
Alanís passing has left a huge, huge hole in our hearts and we were so very, very privileged to have him in our lives.† He was an amazing husband and father who never, ever gave up his fight to win over this disease and made sure that every single moment† he was here counted for so very much.
If reading Alanís Diary helps one person answer just 1 question and makes them feel more positive about living with Prostate Cancer then Alanís journey was worth it.
Alan was cremated on Thursday 31st May 2007 and his ashes will be scattered at sea, which, after his family was his 2nd love.
Thank You to
All our wonderful family and friends who did what ever they could to support Alan, myself, Liam and Nick throughout the last 10 years and especially in the very difficult last few months a huge, huge THANK YOU.† It seems such a small word but it means so very much to us and really does come from our hearts.
To Dr Larry Liew and all his amazing staff at Glengarry Palliative Care Unit. Your efforts over the past 6 months, to keep Alan pain free, while giving him every chance to keep fighting and stay as positive as possible, is something our whole family will always appreciate. Also the care, support and friendships you all gave to Alan, myself, Liam & Nick is something we will never, ever forget.
Thank you for reading about Alanís journey. If you have any comments or questions I will do my best to answer them
Love to all†† Bev, Liam & Nick† xxxx
The following was written by Alan and is part of his diary.
Once again I cannot say how much I owe to my wife Bev who has helped me over the past years without question.
Thanks for taking the time to read this and I hope that it has helped at least one person in the fight against Prostate Cancer. Looking back on the last few years, yes at times I did feel fed up, and was it all worth it, but I can assure any one it is going to be all worth it in the long run .
All above are my own personal thoughts and ideas.
I have no medical knowledge so please consult your own medical practitioner for further advise
DON"T GIVE IN
Please e-mail with your thoughts, comments or questions , I will try and answer if I can , Alan
Links to other Prostate Support Pages
Alan Peacocks Pages
Ė Personal Pages from a mentor from
Y.A.N.A Ė You Are Not Alone Ė A very informative site with heaps of help and advise