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. 

Round 1 day 5

I'm sitting in Room 20 of the Warringal Hospital under observation for what they think is internal bleeding.  Last night I really had trouble sleeping unless sitting upright.  Every time I laid down this black fluid would run out of my nose and mouth after about 15 mins.  I put a bucket beside the bed and set up a little nest so I could sit upright and still sleep.  Despite this i still brought up between 50 and 100 mils of black fluid. 

So I saw Niall this afternoon and he checked me in straight away.  So here I sit under observation with the probability of a Gastro tomorrow to see just how bad it is. 

Let you know tomorrow. 

Round 1 day 1

So much has happened this week. After the port went in I was given a background pain killer called Targin. It is called a background because you keep taking it every 12 hours and it forms a background barrier to pain over time. It worked so well it made realise just what a poor job I was doing in managing my pain.  I went and saw Niall on Tuesday and now I am on it. I still have the Oxynorm and it is recommended I take it when I need a breakthrough shot. Hopefully my constipation will ease soon as well.

Actual treatment is different with the port. There is cream that needs to  be rubbed on ths area of the port about 45 mins to an hour prior. Obviously I didn't have this for today's but I will next time. This will make today's treatment pretty long.  The port has location lugs just under the skin that ensure a proper connection and can be felt easily by the nurse.  Once found the connection is made, treatment begins. 

Although the constipation has eased it hasn't gone,  so I'm still on the Coloxyl etc to deal with that.  I now have what I think it's an impressive array of drugs  lined up in the en suite now.

BTW Blackmore's Pain Relief cream is not a bad one of you are after one that is not an anti inflammatory,  which is what I needed. 

Enough already

Seriously,  I have been off the Capecitabine for 2 weeks now but it is still managing to come up with new side effects. Now my ankles and feet have swollen. Niall says it is still working through my system. Unbelievable,  I was hoping to have the majority of problems gone by now but it just isn't so.

Oh well I start the new treatment on Friday so it will be fun to see what it can add to the mix. Stay tuned next week should be fun.

Between treatments

On Friday I got my port fitted. It is a fairly simple procedure but they give you some anaesthetic with it a you have to stay a couple of hours. I was booked in first patient , 6:30AM check in time !. I didn't know they opened that early. I was not allowed any food or drink the night before which included my pain medicationowedless to say by the time I got ready for theatre I was a bit of a mess. I told the anaesthesiologist what had happened and he was very sympathetic and promised he would give me some pain medication as soon as he could. He also said that I would probably remain alert during the procedure and I said as soon as I got the pain medication I would be asleep . I was right.

By the time I got out of theatre I was in a lot of pain, Not from the procedure but just from my normal pain . So again he administered some pain meds but as the pain had become so bad he had to double the dose. So I took longer to be released as they had to make sure it was.all ok. This pain med is one called Targin and it lasts up to 12 hours. I was given a couple of extra tablets for the night and next day. I'm going talk to Niall about these as they worked so much better then what I am on.

Anyway enough of the sad story, you want the pictures. The first is a diagram of what it actually is . The whole lot sits under the skin with the tube part fitted into a vein similar to the Picc I had. The other part looks like a lump under the skin. This should make life a lot easier as I won't be such a pin cushion from now on, everything can be either drawn or injected though it. .