A PMP survivor!!

An Update

2011-04-16T08:05:00.002+09:30

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 :)

A follow up on my surgery

2010-10-24T13:38:00.002+10:30

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 :)

Good news & not so good news

2010-09-11T11:33:00.003+09:30

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 :)

all resolved

2010-04-11T09:32:00.003+09:30

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 :)

2010-03-07T17:25:00.002+10:30

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

A follow-up

2009-04-26T07:03:00.003+09:30

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.
However!
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

A quick update

2009-03-10T14:04:00.005+10:30

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 :)

Happy New Year to all!!!

2009-01-04T09:00:00.002+10:30

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

An update

2008-08-17T11:31:00.002+09:30

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 :)

The news from that appointment!!

2008-07-24T15:13:00.001+09:30

Howdy,
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...

Whew!
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

2008-07-24T06:23:00.002+09:30

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

Please leave a Comment!!

2008-07-14T16:55:00.005+09:30

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) .....my 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!

My Latest CT Scan

2008-07-04T07:34:00.003+09:30

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 ........

A novice Blogger

2008-06-29T17:12:00.003+09:30

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!!!

hugs,
Keeshamist :)