Wednesday, 17 October 2012

The big wide world...

Leaving hospital yesterday afternoon was hard...  For 29 days Ward 78 had been home...  I was in Ward 97 for a week prior to admission on Ward 78.  So, apart from a 40 hour break I have spent 5 weeks in Auckland City Hospital. 

I came home and went into my room and just cried...  Why?  I don't know.  I just feel like I don't fit in MY world anymore.  Nothing is the same, EVERYTHING has changed...  I just feel lost...

ONE DAY CAN CHANGE EVERYTHING...

I went to see Leena (my psycologist) today.  She reassured me that everything was normal...  I am not crazy, and that feeling instatutionalized is the right way to describe it as basically I had been.

The only way I can describe it is that the hospital is safe.  They wake me when I am due medication, when I am being asked if I am ok, its not just me but the person in the bed next to me and across from me also being asked.  We are all in there for similar things.  Cancer...  At home, I am the sick one, the cancer patient.  Its only me...  With feelings and fears no one at home can understand.  The pain wakes me for pills...

I went back to Ward 78 this afternoon to visit 2 of the ladies in my room.  To be a visitor.  I got to see Neroli and say goodbye properly.  She, Bridget & Susan all validated how I was feeling, also reassuring me it was normal...  I told them what Leena had said to say when leaving the ward all the way to the life "I DON'T LIVE HERE ANYMORE" over and over...  And when I go back for wound clinic tomorrow, to do it again...  They all said it was the right thing to do and all told me to pop in just to say HI if I felt insecure or in Neroli's case "just missed her face"  Haha - that's what I said to her when she had been off sick, I said "Im so glad you're back, I missed your face!"

I am just feeling what I am feeling...  Its natural and normal...  I will get there...

So, now I will say goodnight.  Feel free to comment...  Keep your feelings real, I just need real...

Now, no crying yourself to sleep tonight...  You hear me Trina?

Tuesday, 16 October 2012

One day can change everything

"One day can change everything"

3.30pm on August 10, 2012 was the exact time of the day when everything changed...

The conversation went something
Dr McKenzie: "we have preliminary results in"
Me: "um OK"
Dr McKenzie: "the test has returned a positive result.  It called a neuroendocrine tumour of the ampulla vata"
Me: "........"
Dr McKenzie: "Trina, what do you need?"
Me: "I don't know.....  I don't want this Katherine"
*cries* *Katherine gets on her knees and puts her arms around my waist while I cry on her shoulder*

That's pretty much it....  My life as I knew it had changed forever...

Phone calls were made, in much the same order they had been on the Wednesday, 2 days before when Katherine came in and took me into another room to tell me the ERCP I had had the day before, on the Tuesday had located a tumour and that biopsies had been taken...  And that Mark Lane was 99% sure that it would return a positive result, Katherine told me to prepare for the worst...

At 7.30pm that night my mum, sister & nephews arrived at the hospital.  My nurse Joanne sat with us in the room while I told my family that I have cancer...  Tears...  Alot of tears.  Josh tried to be the big cousin and hold Siua and Lani, when we all know that for that time, I was his mum...  His heart was breaking too...

Two weeks later I had to go to North Shore Hospital for and EUS - Endoscopic Ultrasound Scan.  This was to gage another look at the tumour from a different angle...  Another biopsy was taken.

In the meantime - the stress from the diagnosis kept setting off my gynae pain so Katherine tells Professor Windsor after the 3rd week of admissions that it was stress setting this off & he needed to get the ball rolling for a MDM to be had and a decision to be made in regards to the next step...  Next thing I knew I was being offered surgery for 6 days later...  I left hospital at 9pm on that Friday night having to return at 2pm on the Monday, less than 48 hours later...

Monday 17 September 2012 2.00pm...  I was admitted to Ward 78 at Auckland City Hospital.  My two awesome friends Krissie & Naomi had taken the day off work to take me...  We got there at the right time but were asked to wait in the whanau room...  We decided to go get a munch to give them some extra  time.  In the window of the charge nurses office there was a photo board of the staff who make up Ward 78, now we had a wonder of a time making fun of some of their names...  :P  I was taken to Room 8, Bed D at about 3pm where the nurse went over stuff and told me I was first up in the morning...  Nil by mouth from midnight...  Thank god.  They were taking me up to theatre at 7.30am the next morning...

Dr Raj came at about 6pm that night and explained to us what would be happening in surgery the next day.  He drew us some awesome diagrams (that Naomi went on to recreate as he kinda scribbled on them during his talk).  All good, Nai & Krissie left at 8pm that night.  Krissie with the expectation of receiving a phone call about 2pm the following day to inform her of how the surgery had gone...  I was nervous.  Couldn't sleep.  Thankfully, Katherine was on call and snuck down on to Ward 78 to see me at 11.30pm...  Phew, she put my mind at ease when she reassured me that I had made the right choice choosing the thoracic epidural, if I had to have another gynae surgery, it's what she would have suggested.  Crisis over, I got some sleep.

Tuesday 18 September 2012 6.30am I got up for a shower.  Put on the sexy gown and the awesome stockings and waited on my bed for the people to come and take me away.  They came for me at 7.15am.  I was taken upstairs.  At 7.45 I was in theatre 8 and they were preparing to put my epidural in.  Professor Windsor came in, prayed with me and that's all I remember until I woke up in recovery 5 & 1/2 hours.  They sat me up, I screamed.  It appeared that the "block" or epidural had worn off.  I tried to lay down but they kept telling me they needed to x-ray the central line but it hurt...  Oh man...  Next thing I remember is seeing Naomi as they were taking me back to the room.  "Hi egg" was responded with a very weak "Hi egg"...  That is all I remember...
Krissie arrived at some stage and they stayed for as long as they could.  Dr Raj came back & told us what they had done in the surgery.  I remember the words "it looks like has spread in to the bile duct wall" & "we found a sinister looking lymph node and took it for biopsy".  I remember him saying something about the possibility of having to go to Australia for a scan...  He addressed me and said "Catrina, we need you to not focus on that.  We need you to focus on recovering well from this surgery OK?"  The nurse, Neroli was fantastic.  I needed a lot of help that first night.  I kept apologizing and she was just so awesome.  Lisa, the next nurse was just as great.  They are the only 2 faces I remember from the drug induced daze I was in.

I was on ketamine for nearly 4 days, 40mg and hour.  Fentenyll 5mg every 5mins for 6 & 1/2 days...  I don't remember much except Lisa and Neroli being more than willing to help, Neroli when I just wanted to get out of bed & stand up in the middle of the night and Lisa when it came to reassuring me (sorry for the too much info) that hygienically I was clean (as I was spotting after a period) and because of the catheter I couldn't wear underwear.  She would come clean me at my request...  EMBARRASSING!!!  But I have got to love them, for they are awesome!  I had my first shower on the Friday, 3 days later...

OMG the wound...  I just thought they had put extra padding on it but when nurse Tamra took it off to change the dressing and I saw how big it is, I cried.  It is massive.  I hate it :'(  

My pain was an issue.  We knew it would be.  Leena came frequently.  So did Katherine and Nicol (Nicol is psyio+acupuncture)...  I had a run in with a pain specialist and luckily for me one of the surgical pain nurses is one of my gynae pain nurses, saw the issue & we had a meeting to resolve things...

I was told I would be there 7-10 days...  29 days later I finally came home.  Today, I came home...  Tuesday 16 October 2012...  Today I am 28 days post-op.

Results came through while I was still in 78.  I met the oncologist, Ben Lawrence.  He came to tell me that the margin was deep - in English, it has spread into the wall of the bile duct.  Professor Windsor came the next day with the shocking news that the lymph node had returned a positive.  I have secondary cancer in the lymph nodes...

What next?  A peptide scan in Australia.  When, within the next couple of weeks.  This will tell them just how bad everything is...  Maybe chemo/radiation then probably the Whipple's...  We don't have full results yet so my cancer is yet to be staged.  They need more info.

I can't describe how it felt to leave Ward 78.  Sad...  I don't know.  Anxious.  Fearful...  Everything...  Just overwhelmed.  I'm going to miss Lisa and Neroli like mad.  Lisa kept me sane, listened while I ranted.  Hugged me when I cried...  She told me I definitely made her shifts interesting :P  Neroli just let me be me.  She gave shit as good as she could receive it.  She kept me entertained...  As well as listening when I needed a rant...  The other nurses on 78 were great and I will miss them all...  I will be back there when I have the next op...  Neroli said to pop in and let them see how I'm doing...

I should be happy to be home but I just feel so overwhelmed...  I know it will take time...

Tomorrow I will see Leena.  Thursday brings wound clinic.  Next Wednesday gynae clinic...  Follow up with the surgeons.  Then the peptide scan in Australia.  Then....  The oncologist to discuss what they've found and then treatment options...

Managed to get through this with out too much emotion... 

For updates/ brain rants of a cancer patient...  Watch this space...