14 August 2006 - the last day of treatment,

Pete's Points
It is not often that cancer is a cause of celebration.

Today marks another turning point in my 'adventures' with this disease. I am about to go into the hospital for the last round of treatment - both chemo and radio therapy, hopefully for the last time.

Amazingly, no one has bothered to tell me what happens from here on in. I assume that I go home and simply await the finalisation of the treatment effects and gradually recover back to where I was before the latest attack of the 'beast' took place.

It is amazing to me that there is an assumption in the medical world that the patient will understand, by osmosis perhaps, exactly what will happen now. I mean it's all very well to assume that since you are alive there is at least a remote chance that this state of affairs will continue for at least a little while. It is all very well to assume that the radiation scars will start to heal over time, that the nausea from the chemo therapy regime will dissipate in around 48 hours and that the impact of the chemicals on the body will, over the next 6 months finally be reduced to the extent that they no longer matter.

What does this MEAN? What actually happens as these radiation scars heal? What will be left? What will I look like both from the outside and more importantly from the inside?

At present I know that I have this area around the parts that are being treated that have changed colour and texture and now looks like a giant strawberry birthmark on the neck. I suppose that in different circumstances I would be able to compete with Michael Gorbachov and his birthmark. His 'feature' is not due to any radiation from Chernobyl while mine is definitely due to the impact of x rays on my neck over thirty treatments. What will be the result of the operation to remove the lymph nodes and surrounding tissue in the neck and under the collar bone and the subsequent treatment by these x rays? What will remain there? Assuming that the tissue that is left and will regenerate is likely to be very different from what was there in the first place what if any impact will this have on my life?

Already we know that as a result of the condition and the subsequent operation and treatment there is a major problem with my vocal chords and my ability to speak. We also know that there is some hope that some of this impact can be corrected with speech therapy and if that fails with other treatment. What no one tells you or perhaps CAN tell you is what the likely outcome will be and over what time frame.

Does anyone out there have some 'plan' which they can give to the patient? A sort of road map that sets out the sorts of things that they might be able to expect or at least look out for in the journey ahead?

No idea - certainly something to ask about!

One of the things that concerns me is whether or not there is some proposed regime for checking to see if there are further metastases and if so, to catch them before they grow again to a size that can seriously endanger life.

The last time that I attended a PET scan it did not show the tumour as it should have. It showed some arthritic tissues and suggested that perhaps one of the other things that I need to consider is what the heck to do about this (provided I live long enough of course) but it did not show the tumour.

Now THAT is a worry. If a PET scan does not show a large tumour then can it be used to find any new occurrence or outbreak of the cancer? Once again this is really unclear and something that needs to be raised with the doctors. Obviously by the time that a person feels that something is wrong the chances are that the problem has gone from microscopic to something a damned sight larger and hence less controllable.

So what I want to know is what are the means for screening for a recurrence this time? Will it be blood tests that are used regularly? Will it be something else? Is there nothing that can be done and we just sit back and wait for the next occurrence and then ????.

Being proactive is all very well, but there is a need to be proactive with some tools that may actually enable something useful to happen.

In other words, I suppose that today will be a day when I get to ask some of my dreary questions and then deal with the look in the eyes and faces of the staff who are the recipients of these questions and their responses.

It is a very happy day in one respect to have reached the end of the 30 treatments. On the other hand it is also a frightening time because I have no idea what is likely to happen from here on in and so far no one has actually drawn a map that at least gives you some idea of the lay of the land.

Let's see what happens and I will report back on the outcomes that may be achievable!

How unlucky can you get?

Pete's Points
And if anyone has any clue about how 'lucky' I feel in being blessed with several bouts of oesophageal cancer then all they have to do is to interrogate the cubes I have referred to in my earlier post and find the following data for my age group.

Number of new cases and age-specific rates for selected cancers by year of registration, sex and 5 year-age groups

All Registrable Cancers (except NMSC) ---------------- C00 Lip C01-C14 Head and neck C15 Oesophagus C16 Stomach C17 Small intestine C18-C21 Colorectal C22 Liver C23-C24 Gallbladder C25 Pancreas C30-C31 Nasal cavity C32 Larynx C33-C34 Trachea, bronchus and lung C37-C38 Other thoracic organs C40-C41 Bone and articular cartilage C43 Skin?melanoma C45 Mesothelioma C46 Kaposi's sarcoma C47-C49 Connective and other soft tissue C50 Breast C51-C52 Vulva and vagina C53 Cervix uteri C54-C55 Corpus uteri C56-C57 Ovary and other female genital o... C58 Placenta C60, C63 Penis and other male genital or... C61 Prostate C62 Testis C64-C66, C68 Kidney, ureter and urethra C67 Bladder C69 Eye C70-C72 Brain and other central nervous ... C73 Thyroid gland C74-C75 Other endocrine glands C76-C80, C26, C39 Unknown primary site C81-C85, C96 All lymphomas C88 Immunoproliferative neoplasms C90 Multiple myeloma C91-C95 Leukaemias ---------------- Nest Columns All Years ---------------- 1983 1984 1985 1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 ---------------- Nest Rows All Sexes ---------------- Male Female ---------------- Nest Rows Nest Columns All Age Groups ---------------- 0-4 5-9 10-14 15-19 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85+ ---------------- Nest Rows Nest Columns All States ---------------- Nest Rows Nest Columns

MEASURES ---------------- Number Age-specific Rate ---------------- Hide Calculated Categories as values as % of row total as % of row subtotals as % of column total as % of column subtotals as % of grand total 1983 1984 1985 1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 All Years C15 Oesophagus 46 41 45 39 53 60 50 48 55 50 44 67 44 47 57 50 58 67 63 984

All Years ---------------- C15 Oesophagus Male 55-59 All States MEASURES ---------------- [+] C15 Oesophagus [+] Male [+] 55-59 [+] All States [+] MEASURES ---------------- [Hide Total] [Insert Calculation...] [Hide/Show...]

All Registrable Cancers (except NMSC) ---------------- C00 Lip C01-C14 Head and neck C15 Oesophagus C16 Stomach C17 Small intestine C18-C21 Colorectal C22 Liver C23-C24 Gallbladder C25 Pancreas C30-C31 Nasal cavity C32 Larynx C33-C34 Trachea, bronchus and lung C37-C38 Other thoracic organs C40-C41 Bone and articular cartilage C43 Skin?melanoma C45 Mesothelioma C46 Kaposi's sarcoma C47-C49 Connective and other soft tissue C50 Breast C51-C52 Vulva and vagina C53 Cervix uteri C54-C55 Corpus uteri C56-C57 Ovary and other female genital o... C58 Placenta C60, C63 Penis and other male genital or... C61 Prostate C62 Testis C64-C66, C68 Kidney, ureter and urethra C67 Bladder C69 Eye C70-C72 Brain and other central nervous ... C73 Thyroid gland C74-C75 Other endocrine glands C76-C80, C26, C39 Unknown primary site C81-C85, C96 All lymphomas C88 Immunoproliferative neoplasms C90 Multiple myeloma C91-C95 Leukaemias ---------------- All Years Male 55-59 All States MEASURES ---------------- [+] All Years [+] Male [+] 55-59 [+] All States [+] MEASURES ---------------- [Hide Total] [Hide/Show...]

There were certainly not many in my age group by 2001 but note the volume of increase in raw numbers and then as percentages since 1983. As I say in my opening lines this is a fast growing group of people, unfortunately I seem to be one of them!

News on August 12th

Garpet's Gossip

My recent treatment regime involves having to get to the hospital at 8 am to receive my chemo therapy and then wait around for four hours from the end of this treatment until I can receive the radiation therapy.

Naturally to hang about in hospital for this time is difficult in the extreme. After all what would there be to do?

• Go and sit in the library and read a good book?
• Wait in the cafeteria with those noxious chemicals running through the body and hoping that the smell of the food will not induce a bout of nausea?
• Find a nice waiting room and try and read a good book or watch the idiot box where the main shows in the morning are breakfast television apparently aimed at those who stay at home either to undertake domestic duties or enjoy the joys of retirment.
  

There are shows that are regualr serials on one free to air channel, shows that feature one of two personalities that undertake interviews, show cooking tips and of course encourage the marketing of various forms of tools that will assist those who remain at home. There are of course those wonderful adverts designed it seems to remind us all that we are mortal and that taking out life insurance for a price per week that is the equivalent of a cup of coffee these days is a great investment. This is then of course accompained by those adverts that tell us that as we get older there is a good chance that we will die and asks whether we have prepared for this event or are likely to leave our loved ones in the lurch having to pay for those really expenside funeral costs. The advgerts then of course provide its viewers with the opportunity to prepay their funeral costs and save the family the grief of haivng to find thousands of dollars at the time in their lives when they have just lst their loved one - namely YOU the person watching the show.

So the best thing to do is to call upon your lovely carer to come and pick you up and take you home. There you can be useful and prepare a nice mid-day meal and then have your carer come home for a lovely cooked meal before invoking another favour - namely that she take you back to the hospital for the radio therapy treatment.

Since in my case this involves only three days out of her busy working life I was not afraid to try it and I have to say it is working out well!

I get to feel useful and she gets a nice home cooked meal and a little time out from the stress and rush of the office.

As the food is cooking I can take it easy and do some research on the web about my favourite topic at present - namely oesophageal cancer. Well it's not really a favourite topic, but what they hey the more you know the less you have to worry about. Then again reading the data I am thinking seriously about revisiting my views on this.

For those of you who have an interest in Oesophageal Cancer you may be interested in the information that is available at http://www.aihw.gov.au/cancer/datacubes/index.cfm

The data which is provided lists various forms of cancer and the Oesophageal Cancer rates are provided at:
http://www.aihw.gov.au/cognos/cgi-bin/ppdscgi.exe?DC=Q&E=/Cancer/cancerageratesv7

For people not familiar with 'cubes' of data and their abililty to interact with the data by using the little icons on the bottom of the page to get various tables and graphs from the raw materials provided on line I would be happy to assist if called upon.

This is a fabulous if frightening resource for all Australians. I give you an example only of the sort of data that is available for information. Since the data is completely interactive it does require some knowledge of how to use "cubes" (this is something that those familiar with Cognos Powerplay Products will be able to do with ease.

Number of new cases and age-specific rates for selected cancers by year of registration, sex and 5 year-age groups

All Registrable Cancers (except NMSC) ---------------- C00 Lip C01-C14 Head and neck C15 Oesophagus C16 Stomach C17 Small intestine C18-C21 Colorectal C22 Liver C23-C24 Gallbladder C25 Pancreas C30-C31 Nasal cavity C32 Larynx C33-C34 Trachea, bronchus and lung C37-C38 Other thoracic organs C40-C41 Bone and articular cartilage C43 Skin?melanoma C45 Mesothelioma C46 Kaposi's sarcoma C47-C49 Connective and other soft tissue C50 Breast C51-C52 Vulva and vagina C53 Cervix uteri C54-C55 Corpus uteri C56-C57 Ovary and other female genital o... C58 Placenta C60, C63 Penis and other male genital or... C61 Prostate C62 Testis C64-C66, C68 Kidney, ureter and urethra C67 Bladder C69 Eye C70-C72 Brain and other central nervous ... C73 Thyroid gland C74-C75 Other endocrine glands C76-C80, C26, C39 Unknown primary site C81-C85, C96 All lymphomas C88 Immunoproliferative neoplasms C90 Multiple myeloma C91-C95 Leukaemias ---------------- Nest Columns All Years ---------------- 1983 1984 1985 1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 ---------------- Nest Rows All Sexes ---------------- Male Female ---------------- Nest Rows Nest Columns All Age Groups ---------------- 0-4 5-9 10-14 15-19 20-24 25-29 30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85+ ---------------- Nest Rows Nest Columns All States ---------------- Nest Rows Nest Columns

MEASURES ---------------- Number Age-specific Rate ---------------- Hide Calculated Categories as values as % of row total as % of row subtotals as % of column total as % of column subtotals as % of grand total 1983 1984 1985 1986 1987 1988 1989 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 All Years C15 Oesophagus 592 657 651 635 758 842 735 802 848 859 918 959 946 983 970 1,005 1,084 1,070 1,078 16,392

All Years ---------------- C15 Oesophagus All Sexes All Age Groups All States MEASURES ---------------- [+] C15 Oesophagus [+] All Sexes [+] All Age Groups [+] All States [+] MEASURES ---------------- [Hide Total] [Insert Calculation...] [Hide/Show...]

All Registrable Cancers (except NMSC) ---------------- C00 Lip C01-C14 Head and neck C15 Oesophagus C16 Stomach C17 Small intestine C18-C21 Colorectal C22 Liver C23-C24 Gallbladder C25 Pancreas C30-C31 Nasal cavity C32 Larynx C33-C34 Trachea, bronchus and lung C37-C38 Other thoracic organs C40-C41 Bone and articular cartilage C43 Skin?melanoma C45 Mesothelioma C46 Kaposi's sarcoma C47-C49 Connective and other soft tissue C50 Breast C51-C52 Vulva and vagina C53 Cervix uteri C54-C55 Corpus uteri C56-C57 Ovary and other female genital o... C58 Placenta C60, C63 Penis and other male genital or... C61 Prostate C62 Testis C64-C66, C68 Kidney, ureter and urethra C67 Bladder C69 Eye C70-C72 Brain and other central nervous ... C73 Thyroid gland C74-C75 Other endocrine glands C76-C80, C26, C39 Unknown primary site C81-C85, C96 All lymphomas C88 Immunoproliferative neoplasms C90 Multiple myeloma C91-C95 Leukaemias ---------------- All Years All Sexes All Age Groups All States MEASURES ---------------- [+] All Years [+] All Sexes [+] All Age Groups [+] All States [+] MEASURES ---------------- [Hide Total] [Hide/Show...]