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. 

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. .

Round 7 WK2

I have put off writing this for a day or 2 and you'll soon see why. As l said I had 2 scans and got the results on Wed from Niall.
First the bone scan , good news on this one no trace that the cancer has gone into the bone . Good News.

New the second scan which was a CT scan  Unfortunately the treatment is not working and the cancer has spread. I now have a new lesion in the stomach somewhere around the back just above the kidney. This may be the cause of some of my back pain. There are also some signs of liver disease  This is fairly aggressive given that 3 months ago in the last scan it looked like it was shrinking .

So Niall has ended this teatmart and I am now changing to a 2nd line treatment . In some ways I am happy to change as I was really struggling with :the current one . Of course I am not happy that after all the pain and struggle it hasn't worked but that is the risk you run. My new treatment is a drug called Taxatier, I think that is how it is spelt. I get an infusion 2 out of every 3 weeks. To make things easier I have had the PICC line taken out and I will get a port instead. (I've always been partial to a port but prefer tokay or muscat. Hehe ) I am not sure what that looks like but it involves having a line and connector fitted under the skin. The good thing is that I don't have a dressing that has to be cleaned every week and it is waterproof. So I can shower normally and even swim if t want to. YEAH!

The Picc came out yesterday and I get the port this Friday. Then the new treatment will begin on the following Friday. Hopefully during this break in treatment my hands and feet will get a chance to recover.

I have advised work that I am now unlikely to be returning to work and that I will use up my leave and then look at the income protection insurance. AI my boss has been very good and is doing what he can to help. He is organising for the case worker to come and see me to talk through the options. Also to let me know what I need to do.

So now you know why I delayed writing this one. It is not the worst news I could get but it is also not far from it. I will ty to include pictures of my port in my next blog .

Round 7 wk 1

This will probably be much shorter than I had originally planned.  I spent over 1.5 hours writing a piece of literary genius, sure to win a Pulitzer, and then my useless gloved fingers accidentally touched the wrong part of the screen and in an instant all that beautiful wordsmithing was gone.  It has taken me 2 days to start again. 

Ok, the last 2 weeks of round 6 were not that flash for me. The trip to Twin Waters turned out to be just a different bed to be sick in.  Donna and the boys enjoyed it. The cumulative affect of the treatment meant the time was spent with severe constipation and or gas cramps causing referred back pain.  End result lack of sleep and a miserable time. I also found I it very difficult to get food I could eat so some weight loss as well.

On my return to Melbourne I had used the last of the Oxynorm for the flight home, so by the time I saw Niall and the nurses I was again not feeling well nor looking good. I had managed not quite 2 hours sleep the night before treatment by kneeling beside the bed, putting the heatpack on the edge of the bed so my stomach rested on it and then face planted into the pillow.  I thought this was quite inventive but the nurses were less impressed.  Needles to say I had already rung Niall about more Oxynorm.  A good conversation followed with the nurses re pain management and staying ahead of the pain not waiting for it to get bad and trying to recover. 

So I am trying to stay ahead of the pain and the constipation.  So far I have slept better, not a continuous 7 hours but generally 3 good 2 hour stints usually broken up to go to the toilet and sometimes to take medication. 

The severity of the pain has concerned Niall and he is worried that the cancer may have spread to the nearby bones. Given the proximity to the ribs and spine this makes sense.  So this week I have been for a bone scan and a CT scan. I'll get the results next week so look forward to that bulletin folks.  Niall did say that in my favor was the fact the pain for me was not always in the same place and that I could make it ease off with simple things, apparently bone pain doesn't ease off or move location, so here's hoping. 

Signing off now I'll let you know the results next week. 

Round 6 WK2

As of Friday very little sleep. When I walked into the onc ward to get my PICC dressing done the nurses all commented on how I didn't look well.  I told them I had had very little sleep due to back pain and constipation.  After some discussion they were quite concerned and rang Niall.  After some back and forth with Niall he prescribed me Oxynorm. Because of my intolerance to Codeine (it puts me to sleep very quickly) and to make sure of no similar reaction to the Oxynorm they gave me a dose in the ward and then monitored me for about 45 mins just to make sure.  The good news, Firstly I had no reaction and secondly the stuff works really well. 

My constipation appeared to have disappeared on Friday,  not sure if disappeared is the right word or maybe I should say flushed away.  Anyway it is back and Sat night was not good.  I have to be careful with the Oxynorm as overuse or prolonged use can cause constipation. Ironic isn't it,  that which assists with the problem can actually cause it. I am being very cautious with it.

Round 6 EOW 2

mychemoromance.blogspot.com

Well, it continues to confuse me. There seems to be no rhyme nor reason although I think the link to this week and 2 weeks ago is both weeks I stopped the Capecitibine for a few days. Interesting how this never affected me last year. Anyway this week I am again bloated, constipated and with back pain. I really am not sleeping well this week either. Back to strange positions and such just to get an hour or two here and there.

Yvonne recommended I go off the Capecitibine for a few days again to give my hands and feet a rest. I don't why. They are lovely and swollen, bright red and cracking and peeling, again! That is the second time this treatment they have peeled.

Along with taking everything I can to relieve the constipation I decided yesterday more water was needed. I normally have about 2 litres per day but yesterday I had closer to 3. In addition to this during the night each time I woke (which is pretty often) I had some, almost an extra 1/2 litre.

The result, what I had hoped for, movement at the station. This has certainly ease my back pain too. Woohoo I might sleep tonight. The downside is my hands, calves and feet are even more swollen than usual. It is always give and take.
OK. I waited overnight to complete this one. It seemed all was good until about 10.30 last night. I'm not 6
sure exactly what I did but my back started spasming and continued until about 3.30am. A lot of pain and not much sleep for most of the night. I'm seeing the Osteo again today to sort out the back.

More news to come.

Round 5 EOW 3

mychemoromance.blogspot.com

This chemo continues to be really different. Again unlike other rounds week 3 has been a challenge. All this week I have had an incredibly bad back pain. At the same time I have had a really puffed bloated painful feeling in the stomach.

Were the 2 linked, I had no idea. All I know is that I have had a real problem sleeping. I haven't been able to lie comfortably in any position. My best sleeping posture has been sleeping very upright in our wing back chair with a big pillow in front of me to stop me from bending too far forward. Unfortunately you can't sleep for very long like that. So I've been getting about an hour at a time and then having to move or walk around to get myself reset. Mostly this week I've been tired, as you can imagine.

The good news is, today I went to my Osteopath who worked very hard on my back and my stomach. With a 'crack' my back went back to where it should be and has felt pretty good all day since. It still isn't 100% but it is much better. On top of that I spent the 2 hours immediately after the treatment in the toilet, and now my stomach feels better too. Again not everything feels 100% but it feels a lot better and I am looking forward to sleeping tonight.

I am sooo glad I took this week off work as well, I have no idea how I would have functioned this week.

Any way treatment number 6 tomorrow, further updates to come.