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 :)