Back in hospital 2.3

Niall came in and we talked about the transition home and getting access to regional nurses and pallative care

Friday night started vomiting and this continued into Saturday morning. So Saturday was pretty much sleep and vomit. The visiting oncologist said this was due to a blockage and that an xray would confirm how bad the blockage was.  An operation was out of the question as I was in no fit state to undergo this so all we could do was to wait and see if it fixed itself.

I had a better night Saturday night and was awake and alert Sunday morning.  Today I went onto a sips only diet to make sure the bladder would stay working independently.  My bladder working ok -this was good news.  Bowles still haven't worked properly for 3 days similarly the same for the stomach. A nasal gastric tube was inserted to take pressure from stomach and hopefully the bowels will kick in independently.

Monday and I am on a sips only diet meaning that I can only sip tiny amounts of clear fluid for the whole day as I am being fed the nutrients by iv. Apparently on Sunday i over did this and for lunch and dinner and was sipping quite happily from 5 different juices when advised quite sternly this was not what was meant.  I didn't know, I thought sipping was sipping.  Anyway back to just a sip of water in little amounts for today and tomorrow.  Not sure how long this will go on for. 

Back in hospital 2.2

On Monday I had a blood transfusion to bring my sodium, energy, protein levels back up. Imagine that-me with low salt. This made me feel a lot better and my color returned.

On Tuesday my abdomen and legs were still swollen so they decided to insert a 'tap' into my abdomen and drain some fluid.  They were able to get 5.1 litres of fluid. I got my legs and abdomen back. The tap is still inserted so that if they need to drain some more, I'm good to go. Once the fluid was drained the kidney and bladder all worked and I was able to have a reasonable output of urine without the pain. Today i had a visit from the physio who took me for a stroll along the corridor. I was glad to get back to my room as this took a bit out of me.

On Wednesday there were continuous motions during the day of both bowel and bladder. This drew us to the conclusion that the catheter could come out. But it wasn't going to be today -dam.  Today I slept a lot as I didn't get much sleep last night due to the laxative potions I had taken the night before. Another visit from the physio and another stroll along the corridor. I went further this time-Yeh go me. She wanted to try the stairs as she knew we have stairs at home. This was a bit far for me to tackle. Back to the room and she had me doing exercises like leg raises, toe raises and some boxing. This I couldn't do as I still has the canular in my wrist.

Thursday morning the catheter came out-woo hoo. I can move about more freely now to the toilet and shower. I didn't feel like doing any exercises with the physio so I sent him away. Wanted more sleep as the nurses like to come in very early to do my obs and give me my medication.

Today (Friday) the canular came out from my wrist. Last night I threw up nice green bile. This certainly cleared my chest.  Am back in pain as the fluid had returned to my abdomen.  I have requested another drain but yet to find out if this is possible today. Will update what happens in my next blog.

Back in hospital part 2.1

During breakfast I needed what I thought was to go to toilet and extreme pain and urine dripping from catheter

Dripping seemed to be overflow urine came from outside of catheter

Got everyone into a tizz. First thing was to check catheter for blockages which required manual flushing of the catheter back up through the bladder.  Flush showed multiple blockages.

Next plan of action was to organize the urologist to visit today or tomorrow looking to validate strategy of putting a Stent into the kidneys to remove the blockages.  If possible required a ct scan to confirm blockages in kidney also to check if kidney stones are involved.

Urologist is available and saw her and she agrees with strategy - now to organize.

Ct done within half an hour.  Results so far -indicates blockage in kidney and no kidney stones.  Procedure booked for 5pm today.

After operation - the Stent was inserted with no complications.  Examination revealed right kidney was working ok so nothing to do with that.

Back in hospital part 2

After a promising start and what looked like to be a good recovery, late last wednesday night I saw blood in my urine. During the rest of the evening I went another 5 times seeing blood 3 of the 5 times. After consulting with the oncology nurses and the oncologist, I was admitted back into hospital on Thursday for tests and scans to determine the cause.

On admittance the nurses did a bladder ultrasound which indicated that my bladder had about 800ml which is a very high level which means a possible blockage in the bladder.  The nurses have seen people with around 3 litres of fuid - thats got to hurt. To help drain the fluid, a catheter was inserted the results of which should have been instant fluid to the bag and pain relief. Unfortunately this was not the case. The colour of the urine was black and confused the nurses and oncologist.

Plan of action was:
1.  A full ultrasound scan of the abdomen
2.  during the evening was to hook up a bag of saline to my port and see if I was dehydrated by pumping through the saline.

During the evening the results of the ultrasound came back indicating that the entire abdomen region was full of fluid and that pockets of this fluid was putting pressure on the bladder not allowing it to fill up once emptied.  So instead of a blockage in the bladder it was now indicating a blockage before the bladder. The action plan remains the same which is to leave the catheter in place and try and identify where the blockage was.

It has turned out to be an extraordinarily painful evening for me. Because the bladder was empty I was getting what I thought were signals for the bladder to be emptied.  So to go to toilet resulted in nothing but pain

Some fluid did manage to get through sufficiently relieving the bladder and the pain and allowing my bowels to function. The idea is to leave the saline in place in the hope that the increase flow continues and then hopefully returns to normal.

Radio Day9

Sorry but I am a bit behind with this one but when you read it hopefully you'll see why,

I am HOME!!

I Was released an Monday afternoon just before my radio treatment . The idea being that I am released from Warringal and then start as an outpatient at ONJ(Olivia Newton John cancer centre). Provided everything goes smoothly I'd be home before 6Pm .  Theory sounded good.

Unfortunately there was a glitch at ONJ and instead of 15-20 Mins it took nearly 3 hours . The painkillers had worn off and I was in agony for so much of it. Unfortunately that meant one of the worst nights I've had in a really long time. It really didn't seem to matter what I did I couldn't shake the pain, I couldn't get comfortable,  struggled to get any sleep and basically had a crap night.

This carried on through into the day and so yesterday was not a particularly good day either . So my apologies for not telling you sooner  but on days like this when I do get pain relief I tend to just fall asleep and catch up on what I've missed.

Feeling a bit better today so I am catching up on things.

Round ?. Day ?

I had completely lost all sense of time. So this is coming sometime in the middle of the radiotherapy . Taking h stab at it I would say it is about day 15  , in other words about a week since my last entry . So what has happened?

Not much really here lot of it. I am still in hospital, it took a lot longer than we all thought to get the pain under control. However enned now with my unusual mix of painkillers and constipation crackers it looks like it might work this time. I have had a few reasonable nights sleep in a row with little or no painkiller at all . What does still bother me though is the swelling belly and the bile I burp up during my sleep.

It can at times be a substantial amount of fluid . It means disturbed sleep, making sure I make it over the edge of the bed before it runs out my nose or mouth, getting it in the bucket and then setting everything leak in place so I can get back to sleep. Of course if I miss the bed edge than depending an quantity it is a change of sheets. Yes that has happened several times. It was really bad last mnight and the weekend death has put me on MAXLON (?) to counter it. I dean't Think this will effect my chances of going home tomorrow which is Monday the 23 rd .

Hopefully tomorrow I will write to you from home.

PS- Donna and Ian J visited me yesterday which was very enjoyable .

Round 1 Day 8

Well, I'm still here at the Warringal. Longest overnight stay I've ever had.. It went like this.
Tues night was for obs to see if the black fluid would flow. Unfortunately it didn't,  but I had a lot of pain which they also wanted to look at. So good from that perspective.  I was put on a fasting diet as they thought I might get in early for the Gastro.

So fast Tues night which was no big deal as I haven't been eating much anyway. The biggest issue for me is no fluids including water.  I usually drink around 250 to 500 mil a night.  Anyway Wed morning and I'm not on list so can have light breakfast and we'll see about lunch. Just as I'm finishing the cereal everything goes and I'm fasting again as I might be on afternoon list. I had just sorted the water bottle ready for a big drink. Alas it was not to be. Then I'm told 2pm is the time for the procedure.  So 2pm comes and goes and i say to Donna looks like it will be the after 6pm one now, which means more fasting. Not long after that a nurse and a wheelchair turn up and it is all systems go. Rush to theatre, get to meet Steve the Gastro and away we go.

Results - yes there is internal bleeding coming from tumor, recommendation Radiotherapy.  I see Niall that evening and he is trying to organize the radiotherapy with the Austin. He moves very quickly. 

Thurs morning brings confirmation that I will begin t therapy at the hospital. First appointment is what is called a CT Plan. This involves using a CT scanner to put where exactly they will target the therapy. Booked in Thurs afternoon.  Theoretically this should be reasonably painless, you just lie on your back while they work around you.  All good except when it is lying on your back that is the most painful thing you do.  For me this is really painful,.

Friday morning and I've got my first actual treatment that arvo. I was not looking forward to it at all.  Again, in  theory, it should be painless and for the same reason it is not.  It takes longer and hurts more.  I am a mess by the time I get back to my room.  Good news is my bowels open at least and some of my pain is eased.  I pretty much fall asleep while talking to Donna and stay that way until midnight. Maybe the treatment will be beneficial in other ways. 

Anyway I am here now until they've got my pain under control which hopefully it's early next week.