Bowel Cancer

A journey with bowel cancer

I have been thinking over the last few months that perhaps I should write a short history of my recent journey with bowel cancer, not in any way attention seeking rather some of the things that I found a bit difficult and especially the things I found easy, who knows it just might make somebody else's journey that little bit easier.

The starting point with me was a visit to the outpatients  department of my local hospital for some help with what I thought was a severe case of constipation, after some prodding and poking it was decided that I should be transferred to a nearby Hospital with a surgery ward.

That's when the first alarm bells rang and then a few hours later when I was told that I needed an emergency operation to have a stoma for a colostomy bag on my abdomen as there was a severe blockage in my lower bowel which was possibly a cancer, the four alarm fire bells started ringing about then.

Probably because this was an emergency operation there were aspects of it that could have gone better, like the  super quick prep treatment to empty my stomach and bowels, this certainly bypassed the blockage in a big way, the other  aspect I could certainly have done without were 3 nights of horrendous nightmares following what I can only assume were some pretty serious anesthetics being used.

All this aside, I woke up in the ICU with a colostomy bag in place and no more stomach pains, in fact no pain of any kind which came as a pleasant surprise  when I saw the two rather nasty incision's in my abdomen for the first time.

Perhaps for the benefit of anybody like me who had no idea what this involved, a very  non-medical description, an incision about 5cm (2 inches) long is made across one side of the abdomen, this is accompanied by a similar vertical incision through which the surgeon can work on the small intestine which is cut so that the stomach side of the cut can feed into the colostomy bag, I did say a non-medical description didn't I, but like me, you may have had no idea of what it all meant.

This was followed by about 2 months of healing before Chemo-therapy and radiation can begin, the healing process is stopped by these treatments, again something I didn't know, next I had a PIC line inserted running from my right upper arm through a vein to within about 2 cm of my heart, the slow release Chemo that I  was being treated with fed into this PIC line from a bottle hung around my neck.

In conjunction with the chemo I had 28 treatments of radiation, these were spread over about 38 days as they didn't work on weekends, I was warned that there were some pretty unpleasant side effects of radiation, nausea, vomiting etc and surprised the staff by reporting no side effects at all, I think they were inclined to dis-believe me when I said I felt fine and more than once asked.. how are you really?? in retaliation, I asked whether I was on the placebo course, for the last 7 treatments they up the dosage considerably so I was again warned that I would be feeling pretty awful at times... again I sailed through almost unscathed, on the morning of my last treatment I reported a small blister on my bum where the rays had been ever so slightly mis-directed, without wanting to be harsh, the staff seemed pleased that at last I had had some reaction!!

Again an explanation of what radiation treatment consists of... they lay you on a "bed" which then raises about 6 feet from the ground enabling a huge arm containing the radiation gun to be focused on the cancer site from above, below, from the left and the right side, "lay very still and don't get off the bed... you're 6 feet of the floor, while we go and hide behind our lead screen" this last part is a bit  dis-concerting but hey, you get used to all this stuff, treatment time is about 15 minutes each session.

I was VERY fortunate in that during this whole time I had no side effects beyond feeling a bit tired, A walk in the park when compared to what some people have during these treatments.

After about 2 months to ensure the radiation has "Killed" the cancer growth came  the second surgery, this time they got  serious bout the size of the incision.. about 10 inches vertically from a point  wherein had they gone any lower I would now be female, up past the belly button to  the rib cage, through this the surgeon cut away about 12 inches of my lower intestine then pulled the two cut ends together and sewed them together.

Another 6 months for everything to heal up again before the final surgery to reverse the stoma and let me be rid of the colostomy bag which had been my constant companion for 12 months before I had the reversal.

Because my cancer was very low down the section of bowel that was removed as luck  would have it is the only section to have duties beyond being a conduit to eliminate body waste, this lower section stores and compacts the waste before elimination, to aid in the elimination process it produces a lubricating mucous, my surgeon suggested that in 6 to 12 months time after the stoma reversal the new section of bowel would "learn" these necessary skills... to date it has certainly mastered the art of mucous production but shows no real sign of learning the other skills which we take for granted in a perfect world, Oh to be blessed with a smart section of intestine.

OK so I have obviously had the reversal operation done, this was just prior to re-locating to Victoria in March 2014 and to wind up my knowledge on bowel cancer here is a summary of where we are at now.

My bowel motions are fortunately pretty regular, any signs of diarrhea can best be described as catastrophic, by "regular" if you imagine chocolate soft serve ice cream you're getting close, now because this is not being expelled with the normal amount of force it tends to just sit in place and requires a fair bit of cleaning up, this in turn leads to a very tender bottom at times, whoever would have dreamt there would be times when a colostomy bag sounded appealing. To counter-act this tenderness I've found non-biodegradable wipes to be better than toilet paper at times, after laundering these wipes are very soft and quite absorbent so when inserted in the correct position they act as  an early warning system and are to some degree  at least, leak proof.

You now know a hell of a lot more about my bowel cancer than  you ever wanted to... that's  assuming you have read this far... and you  certainly know  a lot more about it than I did when it  was all happening, just maybe it could be helpful to someone you know???

There is only one more bit of information I want to share with you but its worthy of a separate post, stay tuned.  

Cooler Weather!!!

I'm not particularly fond of hot weather but I really dislike COLD Weather, we had a cold snap with a minimum overnight temperature of 5 degrees Celsius, now that doesn't sound cold if you are in midwinter in areas where it snows a lot, but its all relative our temperature range for the past 8 months has been between 15 to 22, and 20  to 28 so it felt cold to me!!!!
This came to me as a result of all the care and attention that my kids have given me over the last 3 months and the possible need for more care in the future....
perish the thought! but should my health become more of a permanent worry it would seem logical that I should live somewhere close to some of them.
Again logic would seem to be saying that it should be Vicki and Marcus who both live in Victoria (I spent my first 45 years there to) BUT Victoria has a MUCH colder climate than Queensland and I repeat I DON"T LIKE COLD WEATHER.
I suppose this will all be worked out in the fullness of time...........
I have a date set for my next surgery to remove the tumor (a bowel recession), June 13th, so with less than a month to wait its all getting closer.
I have an excellent GP who gave me a pretty thorough going over a few days ago and his comment was "its a pity about that bowel cancer, you would be in excellent health if it wasn't for that"
I am back to living alone again for the moment while the kids get ready for the next round of care, Marcus is the one for the first shift when I go back into hospital and Vicki plans to be here when I' discharged from hospital some 7 to 10 days later.
Sorry all my posts have been centered so much on me and my health but for someone who has always been so well it comes as a bit of a shock.
If you have persevered with my irregular posting and chance to read this, I thank you and trust that all is well with you and yours.

Peter.

Health????

Here we are again, another month is teetering on the edge of extinction, and my first round of 28 treatments (Radiation & Chemo) all finished with pretty near no adverse effects, some minor diarrhea and a little radiation blistering on the butt.
All told though I consider myself very fortunate to have had so little reaction to some fairly aggressive treatment, now we play the waiting game to see when the next surgery to remove the shrunken tumor will be, I have an appointment with the surgical team on May 9 so should find out some more details then.
The word from my Chemo Doctor is probably between 8 & 12 weeks so the game continues!!!
Apart from the.... until now.... continual running around for medical appointments not much has been happening in my world, the continued support from family and friends has kept me sane???? throughout the last few months, "thank you" just doesn't cover it!!!!
I find that my world has become very self centered of late, I'm ashamed to admit that while I have plenty of "Time" I have not been reading blogs or keeping up to date, hopefully in the waiting time that appears to be in front of me I will be able to generate some energy to get back in touch?
My sister Merle is facing the same problem, no energy to get back to her beloved blog, heres hoping we can both break the ties sometime soon.

Peter.

A medical update

Hi to all, my dear friend Judy has reminded me that it was time for another post, it is gratifying to know that there are people who actually care about how I am coping with my Cancer, thankyou.
My treatment was delayed for a week for various medical reasons that I don't really understand and would make boring reading for you, suffice to say that today (Tuesday March 19) was my second day of treatment, radiation and chemotherapy, the course is for 28 days of treatments spread over about 38 days, so far it has been painless and without any side effects.
My family have been the cornerstones of my survival and I just haven't got the words to express my thanks for their love and devotion, when the news broke Vicki and Marcus were on the next plane to Queensland to give me comfort and support, Marcus then had to fly back 4 days later to return to work, Vicki stayed on as Chauffeur and nurse for the following week until my oldesrt son Alan was able to fly in from WA, while he assumed these duties for a week Vicki was able to spend a week officially moving into her new home in Victoria.
As I write this Marcus is once more on a plane to Queensland, he is here for a week this time and Vicki and I have been discussing whether she should take advantage of his visit to get a few more days to organize her home.... and life.
There is another couple to thank for their help with a loan car for all these interstate visitors getting to and from the airport (Gympie is 190 Klms from the airport) and they, Susan and Steven have made it all possible, Susan is the oldest daughter of my lifelong friends Neil and Joan, always on my visiting list when I go to WA, again I find I don't have the words to thank S&S enough.
To finish of this brief post, I am feeling quite well and confident, I have no pain to speak of and apart from the vacuum wound dressing portable machine which goes everywhere that I go, a bottle of my particular chemo mixture connected to a Pic line in my right arm just above the elbow which must NEVER be allowed to get wet... imagine if you will me showering with an arm wrapped in gladwrap and my Colostomy bag stuck to my abdomen.... on second thoughts perhaps you might prefer to skip that particular image.
Thank you all once again for your thoughts and prayers it means more than I'll ever be able to say to have you out there caring.

Peter    

What a day!!!

Parental Guidance is recommended before allowing children to view this image.

If this image looks a bit upsetting just imagine looking at it from the other side!!!

Having spent the better part of a day wondering why my face was all distorted and my hard won improved vision was now worse than ever.... Had I suffered a Stroke? while most of the data I had suggested No, I found it impossible to rule out the possibility!!!

A tense couple of hours in the Emergency Room at the Gympie Hospital though and my mind was put to rest... I had in fact had a Bells Palsey attack? if attack is the correct terminology, I remember my Dad having a Bells Palsey episode? when he was about my age, it seems this is one of the many joys that come to visit as we grow older.

For those who are not familiar with Bells Palsey (which included me up until today) It is a viral disease, same general family that afflicts us with facial Cold Sores, duration is usually between 2 and 6 weeks and I have 2 forms of medication that I hope will help.

The simple task of drinking is now something of a dribbling exercise and hot drinks are even worse, eating is also a risky business as you try to gnaw pieces from the inside of your mouth with teeth that suddenly have developed a mind of their own.

My new medications are tablets 10 (yes TEN) a day for 4 days and then 5 a day for 4 days, the other ones are 1 tablet 3 times per day so it looks like a rattlin' good time for me.

I must make mention of the help I had today, firstly from my very good friend Margaret Davidson, and then from the very attentive ER who had me in for assessment very quickly and then were most helpful as the examination revealed the far lesser evil of the 2 main choices, the senior Medical Officer who gave me the news and prescription for medication rang me at home some hours later most apologetic that he hadn't included Drops or ointment for my right eye (that's usually the good one!) which at the moment doesn't close completly, he made some suggestions for treatment particularly overnight when it will dry up because it isn't producing natural tears, I found the extra effort that he made was way beyond the call of duty and it was really appreciated.

Clear vision at last.

Hi all, its 7PM Saturday 22nd January here in Australia!

About 5 hours ago I had the cataract surgery on my left eye, I am delighted to say that the world has taken on a much brighter hue.... its early days yet but if the improvment I'm seeing now persists I'm going to be one very happy camper.

Australia day falls on Wednesday 26th, I'll try to get back for a jingoistic post for our national day.

I had a vision

I hope that you all had a good Christmas and now as we head for the New Year I realized that I had not done an update on my eyesight.

First thing... my eye surgeon is very happy with my progress and has ordered his new BMW, delivery a few days after my left eye cataract surgery.

For about 10 years I have worn multi focal glasses, so the morning ritual of puuting on glasses so that I can find my way to the next room is well established, now however with no cataract and a new lens in my right eye (which has been my best eye for years) means that the glasses only serve to blur my vision, so I take them off, now I can see quite clearly through my right eye and as my left eye has been deteriorating for years I notice very little difference through it, the problems start to arise if I want to read something or even identify objects up close, for these I need glasses (and probably always will) now the thick strong lens for my left eye takes over while the pre-existing lens for my right eye is too strong, you will by now have become aware of my problem (you may also have noticed that I am in the middle of constructing the longest run-on sentence either of us has ever seen) without my glasses I tend to squint my left eye and use mainly my right eye, while the situation reverses when I put my glasses on... then I tend to squint my right eye, when you add to this situation the further complication that as I have worn glasses constantly for so long now my face feels naked without them and has created its own solution to this... it now feels as though I have glasses on, whether I have or not!!! so you can see (better than I probably) that the return of my long sighted vision has its very own set of complications, I now look forward to January the 13th when my left eye surgery is due.... an especially the month or so afterward s before I can have my reading glasses replaced with more suitable lenses, I also look forward to the time that I have to carry glasses wiih me all the time but not conveniently located on my face.

Well that's my try at the long run-on sentence and also the explanation of where my vision is at, thanks for reading (if anyone did) and may 2011 treat us well.

TSA body scanner radiation.

"Traveling Underwear"

For those who know me it will come as no surprise that I don't fly often, I much prefer to drive when I travel as it makes it so much easier to visit Family and Friends along the way.

So it came as a bit of a shock to learn that there is now on the market special underwear for frequent flyers, while my driving may not be perfect it certainly doesn't require any special underwear so I'm gonna stick to driving.

Inventor Jeff Buske has said he has created new clothing products that should protect flyers from TSA body scanner radiation. Additionally, the new bras and underwear should help flyers who want to keep their private parts a mystery.

Dubbed "Rocky Flats Gear," Buske says he does not care about the politics of the situation, but instead wants to protect citizens from unwanted radiation.

Women can wear special bras or underwear, and men can wear underwear with a fig leaf design that has properties that will block radiation.

The flexible metals will not trip detectors.

Buske has also made it clear that while the fig leaf will hide your genitals it will not hide a weapon or other items from the scanners.

Not too sure about this... when the inventor uses "should" twice in the opening paragraph instead of "will".

The ayes have it.

Don't you just hate anniversaries??

I have an annual appointment with my eye surgeon ever since he removed a pterygium (ter-ig-e-um, but you pronounce it any way you like) from my left eye in 2007, this has been to check on the growth of cataracts that have been developing on both eyes.
Well on Fridays anniversary visit he discovered another pterygium this time on my right eye, as this is by far my "best" eye in a fairly badly matched pair, we need to have it removed as quickly as possible, so I'm booked in to have the "cut and paste" done on July 20.
The surgery last time was not at all painful, the knowledge that he was jabbing a needle into my eye, then cutting away the damaged bit, then cutting away a "patch" from an area beneath my eyelid, then stitching the patch over the first area, all of which I could see a very hazy view of through the eye under attack was distinctly off-putting.
Then there was the joy of finding that he had left a handful of sand, cleverly disguised as the 12 stitches he had attached the patch with, in my eye, the next 24 hours were not particularly pleasant as I silently (in the main) wept away said handful of sand... Oh the joy of being able to relive all this again!!!
There is the added joy of the $800.00 out of pocket expense just to plant a little flag in that sand.

And how has your week been???

Also a very happy 4th of July to those who celebrate it.

Censorship... Ban The Press.

Bloody Hell, just as I perfected my "sleep-in technique" they come up with this stuff.

We are just emerging from our winter season here in Australia, can anyone think of a
more pleasant experience than simply turning over and going back to sleep on a cold
morning? after years of being unable to achieve this I recently discovered a way of
going peacefully back to sleep, in fact getting more restful sleep than the previous
night had produced!!!!!!!!!!!
Do you want to share this secret and risk the wrath of Alzheimer's and Dementia??

If you were brave enough to answer yes... read on, if not please go elsewhere....

My simple solution to getting back to sleep is, DO NOT OPEN YOUR EYES, I found,
for years, that once I opened my eyes to look at the time, or simply for orientation
purposes that was it sleep deserted me.
Since I made this simple discovery I have been able to just roll over and retreat again
to the land of NOD for another 2 or 3 hours, now the bastards tell me I'm killing my
brain.


Heres another discovery.... I had never even heard of the word, much less believed
that I was one, when along comes Katherine Chatfield to inform me that by doing a
web searching (who would have believed that goggling improveyourflow.com or similar
could be harmful??) my symptoms, real or imaginary, I had become a cyberchondriac.

I used to religiously buy the Sunday paper, some would say that WAS my religion, be
that as it may, over the past few months I had not read a Sunday paper, last Sunday
I bought one.... only to make the above listed discoveries, thats it!!!! no more Sunday
paper for me.

What's the progress Doc?

Another health update on my favourite daughter Vicki.

Please click on photos to enbiggen.

To make this one a little different I thought I would take you on a trip
back through Vicki's life, here we see "Mary Poppins and Bert" AKA
Vicki and her older brother Alan, on their way to a fancy dress party.

Jumping forward a few years this shows Vicki combing her hair on her honeymoon.

Again a jump of a few years Marcus and Vicki relaxing near the Adelaide unit which
is our temporary home at the moment.

Rex and Vicki about three years ago, she was positively blooming at this time.

About six months later, when the Cushings disease was at its worst, the puffiness
of her face made her almost unrecognizable then.

At Christmas 2008 in WA there was a marked improvement.

This photo taken today shows a lovely face, clear skin and bright shiny eyes,
I forgot to check whether she had a wet nose like Timmy!!!!

From this you will be able to tell that we are holding out hope that maybe she
has turned the corner and is on the road to a full recovery, sad to say she still
suffers a lot of joint pains and some headaches (these seem to be lessening
though).
The chiropractic clinic she is attending is staffed by a lovely group of caring
people who are very professional in their work, she has now progressed from
just manipulation to an exercise program in what she describes as the torture
chamber.... enough said!!!!
In addition to this, (and with the clinics full approval) she has also enrolled
in a hydro-therapy clinic, this commences next Monday so we will wait and
see what results come from this too, you can see from this that her
chauffeur is being grossly underpaid, there will be a minimum of 7 medical
appointments per week!!!!

You just know that nothing is too much for my FD though.