Sharing my blog

As I mentioned in the title blurb - I am sharing this blog because I was asked to … NOT to highlight my health problems but to offer hope.
SO- If sharing my journey helps even one person to cope with a cancer diagnosis such as PMP/Appendix cancer then I am very happy indeed!!
Life is such a blessing each & everyday!
Treasure each of the small things life brings
- and always remember -
The small things in life are really the BIG things!!!

Sharing a quote from Stuart Scott of ESPN who passed from PMP/Appendix Cancer after a fight of many years. This quote was part of his speech at the ESPY Awards and is good food for thought!

"You beat cancer by how you live, why you live and the manner in which you live!"

Remembering & honouring our PMP Angels everyday - sadly missed.

Magic Moments

Magic Moments

Wednesday, May 25, 2016

Just wanting to share this to give hope - I often hesitate because I know so many others are not as fortunate ...

May 25th 2016 is my 15 year Survivorversary!

I want to shout it from the rooftops …. “I am so lucky - I am so blessed!

15 years ago I was admitted for a scheduled major surgery and it turned into a completely different surgery and a fight for my life - to be followed up 10 days later with the first HIPEC ( Hyperthermic Intraperitoneal Chemotherapy) for my surgeon, the first in our state and only about the third in Australia. We in the PMP community often refer to these combined surgeries (CRS/HIPEC) as the slang acronym MOAS - Mother of all Surgeries.
“I have what??” Pseudomyxoma Peritonei (PMP) - a mucinous abdominal cancer originating from my appendix.
Scary stuff but all I could think of was how lucky I was to have been referred to a surgeon with the skill to first of all do a full cytoreduction surgery when he wasn’t expecting to (it meant many more hours in surgery than planned) , one who recognised what he was dealing with & one who was already skilled up ready to perform his first lifesaving heated chemo surgery. I was also blessed with a wonderful husband & two teenage kids who loved & supported me and with extended family & friends who rallied and supported us all!
Initially my hubby received a call to say that ‘it doesn’t look good’ …. my initial thought was …. “no way … I have too much still to do & I will be around to be a grandmother one day!” (& of course you know that our granddaughter is now 5 years old - our much loved Letterbox Fairy & she has a little apprentice too - and I love our granddaughters to the moon & stars & back!!)
Life over the last 15 years hasn’t been a walk in the park and I have endured several more major surgeries over the years & with each surgery the ‘new normal’ we refer to in the PMP community changes its game plan - BUT I am still here with no recurrence & I deal daily with what life throws at me & try to always look for that silver lining!
Not everyone is so fortunate… that’s why we (the PMP groups) try to raise much needed awareness/ research dollars so that this very rare cancer will one day be more known in the medical community and amongst the general public so that mis-diagnosis and inadequate treatments (because the doctor may not know what he is dealing with & doesn’t know to refer to a PMP specialist) will one day be a thing of the past!
I have joined & stayed active in the online support groups to ‘pay it forward’ and help to support & encourage others through the early & later stages of their PMP/Appendix cancer journey which - as you can imagine - is a very scary & often overwhelming time in a person’s life.
Over the years I have gained as much from being a member of these groups as I have given - I have also made some life long close friendships - we all share a common bond & often refer to each other as ‘PMP Family”. So I am a cyber sister, a cyber aunty, a cyber mum and a cyber grammy to many & I am proud to be!

So as I think over what has been over the past 15 years this quote comes to mind;

“Every new day is a gift - that’s why we call it the present” …. unwrap your gift carefully folks and make each day count!

I will stop my ramble now & leave you with this food for thought;

LIFE IS GOOD! As Stuart Scott, of ESPN, who recently passed of his PMP Appendix cancer after a long fight of many years said in his speech at the ESPY Awards,
"You beat cancer by how you live, why you live, and in the manner in which you live."
Remembering Our PMP Angels today & everyday…. sadly missed.

Sunday, January 3, 2016

A quick catch up & a good bye to 2015 & Welcome 2016!

I haven't been to my blog for a while once again - wow, hasn't this year flown by!!
I have just updated the blog about a further hand surgery I had in October. I am still having difficulties & hand therapy but I will let you scroll through the blog & read details about that if you want.

Even though there have been continuing heath issues this year for me there have also been so many positives!  Our Granddaughter has just completed a year of kindy - she is growing fast & brings us so much joy! Hard to believe she will be a school girl this year! WOW!
We are also blessed to welcome another granddaughter to the world this year - another very adorable little person to love to the moon & stars and back again!!

I have had great times with my family & my friends ... I have also met up personally with four of my "PMP family" this year. One sweet young lady who lives in my city & was referred to my surgeon & we have become good friends! I met up with another lovely lady from interstate a few months ago  and with my "PMP sister" from New Zealand who came across the ditch again to spend time with her daughter just prior to Christmas ... And currently my "PMP Cyber-daughter" from the UK is here visiting again .... It is amazing how with the help of technology we are able to reach out to each other all around the globe & it seems that the world becomes a much smaller place and some of our troubles are lessened just by talking to someone who understands!

Here's to "Paying it Forward" by supporting & encouraging others in their time of need!

Magic Moments;
Keep your Magic Moments,
store them one by one ,
and when the days are cold and dark they'll warm you like the sun.
Remember all those precious things that help the days along...
a little child's trusting arms, a friendly smile, a song.
The tempting smell of baking bread,
a rainbow in the sky,
the puppy playing in the park,
a new born baby's cry.
These are Magic Moments,
don't let them fade away,
store them safely in your heart
to remember every day!
~~ Rose Crouch.

I wish all my family, friends & the PMP community all around the globe a Very Happy New Year - may 2016 bring better health to all & lots of love & laughter - and many magical moments to cherish!!

Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.
~Leo Buscaglia~

We can change the world with one random act of kindness at a time to create a ripple effect! ....

Cheers, Kay xx

Monday, March 9, 2015

OMGoodness ... another post within a couple of days! That's a shock ;) ;)
I got a bit of sense of 'I need to review this blog' when I read through here yesterday.

As I explained I started this blog (many years ago now) because I was asked to tell my story/share my journey to help others. PMP can often be an 'isolating' cancer to be diagnosed with be cause it is so rare. Back in 2001 I felt very isolated (back then it was said to affect only one in a million - see everyone - I always told you I was one in a million **wink wink**) . I had never heard of it so knew nobody who had it.
I did some searching on the internet (My surgeon had given me a couple of reputable sites to read - one of them being Dr Paul Sugarbaker's surgical oncology site)

 I came across the PMP Pals site a while after my surgery but I was very new to the internet  and was very reluctant to pay for anything online. I think it was 2003 when I discovered PMPBellybuttons on Yahoo. Initially I was reluctant to sign up - still a little afraid of putting my details online. When I did sign up I was so warmly welcomed by  [our now PMP Angel] Kevin & the support group soon became like a lifeline & the members like family!

Over the years more online support groups have popped up & with the extensive use of Facebook there are many PMPers across the globe who are as close as a few keyboard strokes at any time of the day & night!  I have grown so close to so many people whom I may never meet face to face - like  one big global 'PMP family'.   There are also some other wonderful web sites that I have in the links section ... but will talk about them more in the details I put in a section about PMP.

I have edited several sections already & over the next week or so will be editing some more & adding some more information about PMP - along with updated links to websites where people can find more detailed information and support!

UNFORTUNATELY when I edited I lost the few hyperlinks I had already done on the page ... so you can click on the list and go directly to that section instead of having to scroll through all of my 'babble' ...... that took me quite a while to achieve as the only way I can do it is to type in the actual HTML language ... I have not been able to find a 'quick fix' for those hyperlinks ...
so bare with me ... it will come ... eventually (giggles)

JKG (Just Keep Going) everyone
Aussie hugs,
Kay xx

Saturday, March 7, 2015

Hand Surgery - January 2015

Why is it that a "simple surgery" never seems to be so simple for me? Sigh!
I have had 2 cortisone injections to help ease the triggering of my right ring finger (& the ganglion at the base of the finger) last year with no success.
SO with the urging of my Rheumatologist to consider a 'simple surgery' to release the triggering I consulted the same Hand Specialist who repaired my Carpel Tunnel on both hands along with a Synovectomy of the Flexor Tendons and Ligaments back in 2008.
(I developed Duprytren's Contracture of both hands after that surgery ... my right hand is much worse ... and it has developed very quickly whereas it normally takes up to ten years to get to the stage mine is at with many people .... )
He advised me to go ahead with the surgery which was a relatively simple procedure - which I had done on January 19th 2015.
It is now almost 7 weeks post op ....
I initially had my post op check 10 days after surgery and had the dressings off and stitches out. Unfortunately the stitches split open the next day & I steri-stripped it together . I now realise it was because of excessive swelling.
My next appointment was a month later (last week).
To hear these words from a hand surgeon is not a good thing...
"Rampant, impressive scar tissue" and "Never seen swelling this impressive & especially this far out from surgery" along with utterances of 'possible further surgery'  .... not words you want to hear at all!
There is a new post with a bit more information titled “SURGERY Jan 15th 2015 Duprytren’s Contracture/Trigger finger release” on the right hand column .....

Anyway on a more positive note ... I find it hard to believe that life has been so busy that time has moved on so fast! I notice my last blog entry was almost a year ago! WOW!!! & that was me celebrating my 13th Survivorversary!
Isn't life a blessing!!!!  - I will be posting about my 14th Survivorversary on May 25th 2015!!!

I enjoy each & everyday ... REMEMBER life is what happens each & everyday ... enjoy all the small things in life because they really are the big things!!
Aussie hugs,

Kay :)

Monday, June 9, 2014

13 wonderful years - blessed!

I am a bit behind with my posts (as usual LOL) but wanted to share this;
 May 25th 2014 was my 13 year "Survivor-versary"!!!
I initially hesitated to post this on my support groups because - as many people know all too well - we have had too many losses in our 'PMP family' - and so many just recently. With much careful consideration I decided to post it to give hope & share some good news at a time when we could all do with some!

On May 25th 2001, 13 years ago - during surgery - I was found to have an abdomen full of a rare cancer called PMP [originating from the appendix] & the outlook was grim. Hubby received 'that phone call' that no loved one ever wants to hear …. 'It doesn't look good - prepare for the worst' …. the fight began ….
My journey has had many twists, turns & potholes & they continue (if it was a real road we would wonder where the Government is spending the revenue LOL) but this is my 'new normal' and I feel very blessed to be here & - along with my hubby - to have watched our kidults grow & enjoy being Grammy to our sweet Letterbox Fairy!!
There is always a positive side to everything & I have made so many wonderful friends from all around the world in the "PMP community" - we are like one big family of support & encouragement ...
I have stayed active on support groups over the years to "pay it forward' by offering support & giving hope to all those newly diagnosed with this rare cancer and try to spread as much awareness as possible ...
As I celebrated this special day I remembered some wonderful friends who are now our PMP Angels watching over us [too many] & those that are fighting just to stay with us - I pray that one day there will be better diagnosis & a cure (and many wonderful people in our PMP family work so hard toward this raising valuable research $$$ - they are Angels on Earth!!)
So even though I celebrate I also want everyone to take a moment to remember & pray for those who are not so fortunate .... JKG everyone & always take the time to tell your loved ones how much they mean to you at every opportunity xxxxxxxxx
Aussie hugs all - feeling blessed!!! 

Friday, August 17, 2012

Another surgery - July 2012

Whoops!! I just realised how long it has been since my last blog update...
The last one was 6 months after my "last" surgery for adhesions. I was doing well at that stage and have to say that for a whole year after that surgery I was able to eat well (carefully chosen foods of course) and had very few serious problems with obstructions. Of course I am referring to what we in the PMP community call our "new normal" ... some pain and/or discomfort is expected on a daily basis .. it is only when it increases passed that 'new normal' that alarm bells ring.

Unfortunately the old familiar 'twisting' of the small bowel began again in ernest  after that and was causing problems with partial obstructions once again and the odd total obstruction (that luckily I was able to deal with at home). Eating was becoming an issue once again because it was causing a lot of discomfort ranging to severe pain for anything from hours to a couple of days after eating something my body decided it didn't like (it was obviously getting caught in little sections again like before the previous surgery)

It was time to make an appointment for a review with Prof Hewett. 

He asked lots of questions and decided to order an barium follow through. 
Surprise surprise - that showed no problems.

Just to revamp - in 2010 it took a year of various tests to show anything up prior to surgery - and then there was only a small area of banding showing up which he thought he could 'fix' via keyhole - WRONG - that surgery was the full open incision, very extensive and required three bowel resections where it has burst during surgery. A long recovery time.

This time he said he was ignoring the fact the X-rays didn't pick anything up & wanted me to think about having surgery sooner rather than later while it was still relatively minor - hopefully a keyhole procedure. He gave me 4 weeks to think about it. In his words "I don't want it to get as bad as it was before"

After a lot of angst & thought and lots of discussion with hubby I decided to go ahead with surgery hoping it would be an easy fix.

Surgery was scheduled 2 days after I saw him for my follow-up appointment - striking while the iron was hot as they say!
So on July 5th I was scheduled for a keyhole procedure (with an understanding he would revert to the open incision if needed - he said if he found anything more extensive it would be remiss of him not to deal with it at the time - I agreed)

I woke in HDU to find the surgery had required a large open incision. 

When Prof Hewett visited the next morning he explained that the adhesions were so bad that he was unable to see anything with the camera and had to open the abdomen ... he worked hard on clearing the adhesions in the area I was having problems - bursting & resecting the small bowel in two places and then 'bailed out' because it was too dangerous to proceed any further.
He said the Adept Gel he used before finishing the surgery last time in 2010 (to help inhibit further adhesions) clearly did not work at all.
He also said any future surgery is NOT possible!!

I was moving along nicely with my recovery - moved onto free fluids and a day before discharge I had a total obstruction; extreme pain, vomiting, NG tube inserted, emergency CT scan (he thought one of the resections may have burst or be leaking) and I was bounced back to HDU.
In HDU it was decided that a PICC line needed to be inserted because even the ICU doc who specialises in neonatal canular insertions was unable to insert a line. I was put on TPN (fed via the blood) and it then turned into a waiting game to see when & if I would be able to tolerate food.
I was in hospital close to three weeks and kept on TPN until the night before discharge. I was back on ice chips & VERY gradually moved to clear liquids & then free fluids. My surgeon was very reluctant to 'push' the foods as he knows further surgery is not an option.  
I finally 'negotiated' my way home on free fluids after almost three weeks in hospital (I had another partial obstruction when they tried to put me on a low residue diet but I believed that I could monitor my food choices better at home) 
I have been home a little over three weeks now ... still on mainly free fluids with some tiny amounts of soft steamed fish, eggs, and soft chicken being tolerated and some dry biscuits and toasted white bread (all in small amounts)
I am also supplementing my diet with fortisip ...
I saw my surgeon for a post op check a week ago and he seems to think this may be 'as good as it gets' - I see him again in a couple of weeks & I want to be able to say "you were wrong!" ...(The power of positive thinking!!)

I am slowly regaining some strength and although the pain level from the wound/internal abdomen is still high at times it is improving. There was a section of wound that was not healing properly - that seems to be almost fully healed now too.

So baby steps toward recovery ... at least they are in the right direction at the moment!!!

It is SO good to be home getting the most precious daily "cuddies" from my beautiful granddaughter!!!
 I am now looking forward to being given the 'all clear' to get back in the heated pool to exercise with my friends once again!!

Life is good and each day is a blessing - never take it for granted!!
Hugs, Kay :)

Saturday, April 16, 2011

An Update

It has now been a little over 6 months since my surgery for adhesions.
I have had my post op check since posting last (I just realised it has been a while). The pathology was good ... no recurrence of PMP in there! WOO HOOOOOO

My surgeon said he "realised why I was in trouble when he got in there" ... the entire small bowel was twisted and looped on itself and 'glued' together. He had to pull out and scrape every centimetre to free it up ... a huge surgery and it has been a long recovery time... longer than I expected. As I said in my prior post - the small bowel burst in 3 places during surgery & was able to be repaired without losing anymore ... great news because I lost my colon & part of my small bowel in my "cut'n'dice" for PMP in 2001. .... (if you want you can check the story at the bottom of the blog for more info on that)

The surgery has been successful in the fact that I am now able to manage to eat solid foods (chosen carefully) without the intense pain that followed because the food could not travel through the digestive tract.

I am still having problems with partial obstructions & pain after eating some foods or some activities and have recently started to feel the familiar 'twisting' of the bowel on sneezing, coughing or twisting while bending ... it is not anywhere near as bad as it was before surgery & I hope & pray that it doesn't ever get that way again.

There is a certain amount of pain etc that is a part of 'the new normal' after these types of surgeries & as long as I can eat a reasonable diet I am happy. I will always have to choose wisely because of my ileostomy (Harriett) ... and at the moment I only eat one "solid" meal a day ... choosing something light or liquid for the other two & I am very happy with that! (especially since I was basically living on liquids or slush for the better part of a year prior to this last surgery)

As I have shared on this blog, I have other health problems and at the moment am in a very major flare-up with my auto-immune arthritis so am in intense pain in every joint & muscle - literally. I am hoping this flare-up runs it's course sooner rather than later and goes into remission where the pain is more tolerable with the use of my pain relief patch (because it has been 'over the top' for weeks now where even getting out of bed is an effort) .

BUT the absolute best form of pain relief for me? My darling 7 month old granddaughter ... a beautiful smile and hug from her and I melt and forget about any pain for the time I am holding her &/or interacting with her. ... wish we could bottle that feeling!! LOL

To all those struggling with their own health ,
JKG!! (Just Keep Going ... derived from a quote by Winston Churchill; "When going through Hell, just keep going!")

Aussie hugs, Kay :)

Sunday, October 24, 2010

A follow up on my surgery

It has been 3 weeks now since my surgery so I thought I should follow up my pre-surgery post.
Unfortunately the surgery wasn't the small keyhole surgery we had hoped for. I ended up with the full length incision once again (3rd time on the same scar - I think he should have installed a zipper LOL).
When the Prof inserted the camera to prepare for keyhole he realised the scar tissue/adhesions were very extensive throughout the entire abdomen. He then proceeded to do an open surgery, scraping the scar tissue/adhesions off every bit of remaining small bowel. Unfortunately the small bowel burst in 3 places during surgery - the upside is that it was in a controlled way & it was able to be repaired without losing any more bowel.
The Prof put a gel called Adept into the abdominal cavity before closing - this is supposed to inhibit excess scar tissue from developing in the crucial first days after surgery. He said he can't guarantee it will help but it won't do any harm.

Although it will be another long road to recovery, the best news ever is that there appeared to be no recurrence of PMP!!! Woo Hoo!

I see the Prof for my post-op check up on Nov 2nd so will get more details from him then re pathology etc
Hopefully I will be a bit further along the road to full recovery by then - at the moment I am taking one day at a time.

more later,
Kay :)

Saturday, September 11, 2010

Good news & not so good news

First the good news!
Hubby & I became grandparents to a gorgeous baby girl a week ago!
Aaliyah Isabella came into the world at 2.12am, September 4th, 2010 and weighed 7 pounds 12 ounces. A first niece for Scott & Jass. Our Daughter Shona & Marc are very proud parents indeed ... we are all thrilled beyond words!!

The next lot of news is not so good (but at least I have answers).
I am scheduled for more surgery on September 30th - I asked the Prof for a couple of weeks home with the new baby first (yes folks we are lucky enough for her to be living with us!!)
As you would know from prior posts I have been having problems & lots of pain since last November & all the tests showed nothing. I had thought it had resolved. After eating no solid food for over 3 months I started to be able to tolerate some low residue food (& stubborn me decided that was as good as it was going to get & because there was nothing showing up in all the tests I had I began doubting myself)

Recently I decided to listen to my 'gut instinct' (pun intended) and made another appointment with the prof. He asked me to eat a meal of hard to digest food just prior to having another barium follow through. It worked!! The problem area definitely showed up and I had a brilliant radiologist who knew exactly what to look for too. I have a section of small bowel approx 20cm in from the ileostomy that has strictures ... this is stopping solid food from passing this area for ages (until it is broken down). This has taken up to a week in some cases and the pain during this time is intense.
they could not rule out a recurrence of the PMP because they also found many small nodules throughout the abdomen BUT the prof seems to think that because my scans have consistently been all clear that a recurrence is unlikely .... I like the way he thinks!!!

I am hoping that it will be a simple procedure where he can release some scar tissue but am prepared that he may have to remove that section of small bowel and resect it ... either way I am hoping for a quick recovery to get home & enjoy my darling little granddaughter, Aaliyah!!!

More later, Kay :)

Sunday, April 11, 2010

all resolved

A quick post .... after over 3 months of surviving on liquids and soft foods whatever was causing the digestive problems and intense pain has resolved itself...
Even though we don't know the actual cause I am very happy things are back to normal (well the new normal post PMP anyway)
A piece of twisted bowel was picked up on a CT Scan and was reported as a possible congenital defect ... funny that in what seems like hundreds of CT scans prior to and since surgery in 2001 it has never been noted before ... mmm?
Anyway that piece of twisted bowel just so happens to be in the very area of pain & problems ... a coincidence? I doubt it ...
Hoping , praying and fingers crossed the pain & partial obstruction (??) doesn't recur .. but in the meantime I am enjoying my food!!!
Hugs, Kay :)

Sunday, March 7, 2010

I just realised how long it has been since my last post ...
I was hospitalised in November 2009 after a week of intense pain and being unable to eat solid food. I had put it off as it was not a total obstruction. Lots of pain in the lower to mid left quadrant around the area of the hernia repair earlier in the year. I was discharged after a few days in hospital (under instructions to page the surgeon if it got worse). I made it through Christmas still mostly on liquid or extremely soft, easily digested foods. A series of tests were done in the New Year but nothing conclusive was found ... yet the pain and lack of appetite or intense pain on eating continued. The barium follow through did take an abnormally (for me) 2.5 hours - the barium is normally through my altered plumbing in 20 mins tops! A CT Scan follow up was performed a month later but the problem was still a mystery - except a "congenital" (??? never been found in the dozens of Ct scans before) loop of small bowel was noted twisting from the bottom left of the abdomen and joining up at the top left side of the abdomen .... strange to say that is where all the pain was and where all the food appeared to get "stuck". If I did manage to eat the food would take up to a day to leave the stomach - during this time it was very uncomfortable - and then get stuck in that area on the left causing LOTS of intense pain ...
The good news is that - after 3 months of this - I have been relatively pain free in the abdomen over the last week and have been able to eat!!! I am still not sure of the cause ...
My surgeon was thinking
A. Hernia recurrence,
B. Adhesions causing partial obstruction ....
At this stage I have avoided more surgery ... because neither of these things showed up on the tests (the hernia that was repaired in April didn't show up on scans either)
So fingers crossed whatever it was has resolved itself and will NOT RETURN!!
I see my surgeon again on March 16th so will see what he thinks
Take care all,
Hugs, Kay xx

Sunday, April 26, 2009

A follow-up

Hi all,
The ultrasound of the liver lesion was fine (whew!!) ... a fluid filled cyst that they are not at all concerned about. They will just know to keep an eye on it with each coming scan.
the week before my followup visit I had yet another "small bowel twisting episode" which normally resolves itself fairly quickly ... but .. this one didn't and I was still in pain when I went for the followup visit.
On examination he found a hernia & I am now recovering from an abdominal hernia repair ... I will add more detail in my blog ............
It has been just over a week and I have less pain now ... I see my surgeon for a post-op check on May 20th,
hugs, Kay

Tuesday, March 10, 2009

A quick update

Hi all,
I realized the other day when someone referred to my blog that I hadn't been on here for quite some time!
I have become quite addicted to Facebook of late and have been having so much fun connecting with lots of PMP pals from all over the world in a fun & chatty way!
I have just had my six month follow-up mammogram & ultrasound and the good news is that the lumps have not changed at all so I can leave it another 12 months now!!!
I have also had my follow-up ultrasound on the liver lesion that was mentioned in my last CT Scan ... I will see my surgeon to get the results on April 2nd ... I feel very confident that all will be OK with that too.
I am fast approaching my 8 year anniversary of my MOAS ... May 25th 2001 .... where did all that time go??
Anyway ... I will keep this one brief - if anyone reads this who is newly diagnosed don't forget to look at my links to other stories on the right column or I would be more than happy for you to contact me by leaving a comment & including your contact details ..... or find me on the PMPBB yahoo group (link at the side of page)
Take care all,
Hugs, Kay :)

Sunday, January 4, 2009

Happy New Year to all!!!

Hi everyone,
It has been quite a while since on signed on to my blog .... time has been marching on and there has been a lot happening in my life in the past year!
2008 started with us being called to my very ill Mum's bedside and she passed away while surrounded by her loving family on Feb 9th. She is so very dearly loved & missed.
This year seems to have flown by ... I have been maintaining my health to the best of my ability & have come to terms with my early "retirement" (brought on in 2007 by my continued health problems). I have even learned to enjoy my "freedom" now .. I did go through a "mourning" period where I really missed my job, my colleagues and the children I taught & cared for! The daily interaction & challenges it brought were a huge part of my life. I have managed to redefine my life now ... I am very thankful for my wonderful hubby & kidults for helping me through that stage.
I decided to go ahead and have carpel tunnel surgery on both hands late in the year (5 weeks apart). Once inside it was discovered that the surgeon needed to do a "synovectomy of the flexor tendons & ligaments" too!! ... nothing is ever straightforward for me LOL ... after all the PMP was a surprise during surgery!!
The good news is that I have feeling back in both hands ... my right hand is healing well .. the left one is still in the earlier stages of healing. I know it won't help with the arthritis pain but it is nice to be able to feel that I have a hold of things ..mmmm .. maybe less breakages????
I just looked back and checked that it is only at the end of June that I decided to write this blog (after being asked to share my story with others).
I haven't gotten back to filling in all the details of my journey yet but I have included an overview which I hope has helped others as they search for information about PMP.

I wish everyone a Very Happy New Year
For my PMP buddies!!!
May all our scans be clear and our markers decrease!
For those needing chemo .. may it go smoothly & be successful!!
And for those yet to face surgery may you have support from loved ones and be safe in the hands of a skilled surgeon!!!
For everyone!!!
..... May 2009 be filled with many reasons for laughter, much time to spend with loved ones and most of all good health for all!!
Huge Aussie hugs,
Kay xx

Sunday, August 17, 2008

An update

Hi all,
I haven't forgotten about continuing with my story but have had major problems with the laptop. I now have it back but with many missing programmes ...... Once Microsoft Office is re installed I will be able to access my journal (which I finally located on my old computer) ... so hang in there!!

Hope all my friends are well,
Hugs, Kay :)

Thursday, July 24, 2008

The news from that appointment!!

Back from the appointment & all OK ........ I insisted on a follow up ultrasound and he wants me to have it done in 6 months... he explained that because it (the liver lesion) is under a cm in size that it is probably nothing to worry about and that often the liver has little 'abnormal' cells that are formed when the liver itself forms (??) ....
The nodules are nothing to be concerned about and the malrotation of the duodenum is also not some thing to be concerned about -- nothing to be done for that ...
The pains and twisting of the bowel is probably caused by scar tissue/adhesions and nothing can be done there either ... I knew that and besides that has been happening ever since the surgery pretty much ... just have to wait for it to untwist when it happens and then I am sore for a few days .... I try to be careful when bending, twisting, coughing or sneezing ....
The swelling around the stoma has settled down and it seems that it was made worse by the blockage that I spent a couple of days in hospital with recently...

Anyway I am happy to wait for 6 months for the ultrasound because it would then show up if there was any increase in size or other changes .... (besides with it being so small there is time to wait if it was anything "not nice")

Take care,
Love & hugs,
Kay :)

Appointment today

Hi all,

I don't normally get myself "tied in knots" about appointments but let's just say I will be relieved AFTER I see my surgeon this morning. It has been a long drawn out wait & I haven't dwelled on this scan too much except the past couple of days .... I haven't slept much the past couple of nights .... middle of the night sleepless worry is not normally the most productive thing!!!!
Wish me luck ..... I guess I won't know anything today because I will have to have further tests done but I think a chat with my surgeon will bring my husband & I some peace of mind,

hugs, Kay

Monday, July 14, 2008

Please leave a Comment!!

Hello again my friends!
I have been searching the layouts to find a link I can have near the top of my page for general comments / questions but - alas - I am unable to find anything ..... hence the title of this post .. "Please leave a comment"
This title may be easy to find in the post archives ??? Anyone that can tell me how to create a link please leave a comment with instructions ......

You will find as you scroll down that I have been a busy little beaver typing away .... as promised I am trying to type out my PMP journey with more detail ... in the meantime there is a brief summary of my journey completed for you to read.

I am happy for anyone to leave questions in the form of a comment or to email me directly if there is any more information you would like or that may help you in your own journey.

This has been a tough start to the year with the loss of many dear "virtual friends" on the PMP bellybutton forum (see the link on the right side of the page) heart aches for their loved ones left behind.

May God hold them in the palm of His hand and may He wrap his arms around those left behind to give them comfort in their time of sorrow.

Please keep them in your thoughts and prayers too

More angels in heaven.

I hope & pray that research will be fruitful in the search for a cure for this rare cancer and that the diagnostic tools for detecting it will become much more reliable in the near future!!!

I remain so thankful that I am a survivor of more than 7 years ... I am truly blessed!

Friday, July 4, 2008

My Latest CT Scan

July 4th 2008 (Happy Independence Day for my American friends!!)

I had a CT Scan yesterday ... a few pains etc that we thought warranted another check.
I am now trying to decipher things like;

  • low density sub centimetre liver lesion
  • omentum & mesenteric nodules
  • malrotation of the duodenum and related inferior elongation of the uncinate and the head of the pancreas ....

The report says these things haven't shown much change since the last scan (last July) ..... except they weren't on last year's report at all!!! mmmmmm..... (I am trying hard not to be concerned)

This statement
"if thought indicated, a routine surveillance ultrasound of the liver is recommended for further assessment"
has me thinking ..... YES! I want it followed up!! (I now have to wait until July 24th to see my surgeon as a follow-up ... yikes!!)

The statement I do like;
"there is no CT evidence of recurrent pseudomyxoma"
Yayyyyyy!!! gotta love that statement!! ......... Happy Dance time LOL!!

One thing is that the report is so much more detailed this time ... different Radiologist doctor reading it ... I normally get referred to the same one but he has "retired" now and this one was VERY interested in PMP ... he was very thorough and had trouble with the veins so took me down to ultrasound and used ultrasound guidance to insert the canular ...

He was very very nice & explained that CT Scans were not considered a good diagnostic tool for diagnosing PMP back in 2001 ..... Scans are so much more detailed now ... that is a comforting statement considering my PMP was a "surprise" during surgery!!

I will update once I find out more about the "dot point" findings ........

Sunday, June 29, 2008

A novice Blogger

This is my first attempt at blogging ... other than a few entries on my 'myspace' page that is .... so please bear with me as I learn.
I have been asked to tell the story of my journey with PMP (
Pseudomyxoma Peritonei) - a rare form of abdominal cancer generally originating from the appendix ... so shall we just say that I am one in a million LOL!!! (the number of people diagnosed with this condition per year)

I will start my story once I have learned a bit about this blogging process and learn how to set up my page and set up links and about protecting my privacy and that of my friends .... online safety is one of my concerns I must admit ... so this is a big step for me ....

so to quote a
cliche` ... watch this space!!!

Keeshamist :)