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Jay picked me at 10:05am from my unit.
Arrived at Pindara Private Hospital at 10:45am, I said goodbye and he headed home.
Went to reception and got admitted.
Jan the volunteer with 10 years service, took me to my Oncolgy reception, where all this good 'shit' is going to happen.
After confirming that 'I was me' Paula my nurse lead me to my private room #14. I was absolutely stunned by my room, it was better and bigger than the motel rooms that we have stayed in.
My hospital room.
My hospital room.
The view through my 'office' windows.
I overlook the Surfer Paradise AFL and Cricket clubs.
My hospital room.
11:00am - The 2 nurses Paula and Monique inserted a cannula into my right lower arm vein. The cannula is connected to a portable stand which has a battery/240V 'motor' which pumps liquid into the cannula. While the battery is charged, I can walk around dragging the portable cannula stand with me, eg: going to the toilet etc.
So for the next 5 hours, the cannula inserted 100ml of my CLL solution (Obinutuzumab aka 'Magic Liquid') slowly into my blood. Upto to 4 hours I was OK, no side effects then I got the shakes and chills and wrapped myself in 2 blankets to keep warm.
Dr Pat popped in to see how I was doing.
6:00pm - 2 new nurses Judy & Liv (arvo shift) told me that over night I was having a 1,000 ml of (Sodium Chloride 0.9%) to flush my 'Magic Liquid' through my blood system and kidneys. This will take 12hours from 6:00pm to at least 6am Wednesday. I was absolutely buggered, so I climbed into bed, as all I wanted to do was sleep. Dinner came but unfortunately, I wasn't feeling well enough to eat it. I laid in bed with 2 blankets on, but after a short time, I was hot, so I took off 1 blanket, then still very warm, took off the other one, so now I am laying on my bed in my t shirt and boxer shorts, with my cannula in my right arm and my CPAP-snoring machine on my left side. I can only lay on my back or a very little to my sides, as the tubes are not long enough.
At approx 1:20am, my cannula machine's alarm went off, it had run out of battery, so I had to push the "Nurse Button' who came and plugged it into the 240v, so all good again, until I needed to pee, as it was connected to power, the powercord wasn't long enough to get me to the toilet, so I rang the nurse again. ALL GOOD.
Consequently, I didn't have the greatest of sleeps.
That was my 1st day. Not really great at the end.
11:47am - The patient with the cannula attached.
12:36pm - Lunch. Yumma.
1:18pm - The view through my 'office' windows.
2:04pm - Afternoon tea - Coffee and Cake - YUMMA.
2:17pm - 77.2mL to go.
3:33pm - 49.4mL to go.
4:41pm - 25mL to go.
6:50am - I awoke at 5am and got up.
I am feeling absolutely 100% FINE., until they pump today's 900mg/307mL of triple strength of my CLL solution (obinutuzumab) into my blood.
8:30am - My bed was made by Paula, she told me that the bedding has trackers attached to them, as they go 'missing'.
Eg: my pillow is stamped with Robina ED.
Nurse Paula also said that my 'Magic Liquid' hasnt arrived yet.
9:00am - Dr Pat called in.
My lymph nodes appear smaller. Tomorrow, I get a blood test to see how my kidneys are getting rid of my dead cancer cells.
Nurses Paula & Liv helped today.
I had 307mL of triple strength of my CLL solution (obinutuzumab) pumped into my blood from 11am to 4:33pm. No side effects.
Start time of 307mL of Triple Strength Obinutuzumab was 11:00am.
Finished at 4:33pm.
After the above finished. They started flushing out my blood with the usual 1,000mL of Sodium Chloride.
I am awake and feeling great. No probs at all.
When dinner arrived, I devoured it quickly, a little different to last night.
Wednesday's meals ... they were YUMMA.
Wednesday Brekky - scrambled eggs, tomato, bacon and 2 sausages plus orange juice.
Wednesday Lunch - chicken schnitzel. mash potatoes, veggies with slice of lemon, mandarin, choccy mousse with ice cream,, orange juice.
Wednesday Dinner - Burleigh Bighead Beer, Salmon Cake, garlic aioli, Mash potatoes, veggies.
After Dinner, I watched telly, then went to sleep about 8:30pm.
About 10pm - Karla woke me to take my blood pressure and temperature..all good.
7:49am - Brekky has arrived.
8:42am - My bed is made.
9:00am View from my 'Office".
My CLL Liquid.
12:11pm - Turned it upto 100mg/hr.
12:35pm - Lunch arrived.
Luckily, I can eat and drink while having the "Magic Liquid".
3:33pm - Turned it upto 350mg/hr.
4:11pm - Turned it upto 400mg/hr.
5:07pm - Back to flushing with Sodium Chloride.
5:37pm - Dinner has arrived.
4:00am - My Sodium Chloride flush time elapsed and the alarm went off, so I buzzed Karla. I went back to sleep, tossed and turned.
5:15am - turned telly on.
5:30am - a nurse came in and did my blood test.
6:20am - Nurse Karla came and connected another 1,000mL Sodium Chloride flush. Dr Pat flushes the blood a lot to clear out as much of the dead cancer cells as possible.
Now I am waiting for Dr Pat to pop in and tell me what is next.
8:45am - Dr Pat popped in and was happy with my results so far, slowly getting closer to the normal range.
My last blood test before this morning was 26th August 2024.
My white cells have dropped from 91.5 to 17.7 normal range is (4.0-11.0)
My Lymphocytes have dropped from 88.8 to 11.77 normal range is (1.0-4.0)
Unbelieveable. The Obinutuzumab is obviously working well.
10:00am - 703mL of Sodium Chloride to go and continue monitoring me.
Spent the time just buggering about on my laptop and walking along the corridor.
6:30pm - Nurse Judy connected a new 1,000mL of Sodium Chloride for overnight, it takes approx 12 hours to empty.
Toilet breaks are about every 45 minutes caused by all the liquid being pumped through my blood system. Consequently, my sleep was not real flash, but I am feeling very good, no detectable side effects so far.
Woke up for good about 4:30am.
Thursday's meals ... they were YUMMA.
Thursday brekky - scrambled eggs, tomato, bacon and 2 sausages plus orange juice.
Thursday lunch - beef stroganoff, mash potatoes, veggies, side salad plus desert with ice cream, orange juice.
Thursday dinner - Burleigh Bighead Beer, Roast Beef, gravy, Roast potatoes, veggies, 2 Fruits, Ice cream, apple juice.
After Dinner, I watched telly, then went to sleep about 8:30pm.
About 10pm - Nurse Karla woke me to take my blood pressure and temperature..all good.
Blood Test Results between 26th August 2024 and 30th September 2024.
6:00am - Today's view.
6:26am - Flushing has started again.
11:43am - Flushing has a long way to go.
8:03am - Brekky.
10:23am - Morning Tea.
12:31pm - Lunch arrived.
4:27pm - Flushing nearly finished.
5:35pm - Dinner has arrived.
6:36pm - Shock, horror - Starting another 1,000mL of Sodium Chloride.
5:00am - turned telly on.
5:05am - Nurse (not Karla) took blood pressure aand temperature and blood prick - all normal.
5:30am - Nurse Kristen came and took blood for this morning's pathology test.
6:20am - Nurse Karla came and reset the cannula to finish the last 100mL of the 1,000mL Sodium Chloride flush. Dr Pat flushes the blood a lot to clear out as much of the dead cancer cells as possible.
8:35am - Nurse Monique attached a new bottle containing a 1,000mL of Sodium Chloride and will continue to monitor me.
I think this is my 8th 1000mL bottle, no wonder that I am pissing alot.
Now I am waiting for Dr Pat to pop in and tell me what is next.
9:10am - Dr Pat popped in and was happy with my results so far, some are back in the normal range, platelets, for example, are slower to return and will take more time.
My lymph node lumps on my neck are slowly decreasing.
My last 2 blood tests before this morning were yesterday 12th Sept and 26th August 2024.
My white cells dropped from 91.5 to 17.7 to 6.3 normal range is (4.0-11.0)
My Lymphocytes dropped from 88.8 to 11.77 to 2.24 normal range is (1.0-4.0)
Current LEAVING Hospital on Saturday arvo, depending upon side effects, blood tests etc.
Been continually running Sodium Chloride through my blood, about 1pm I was buggered, so I laid down on my bed listening to Tom Elliott on 3AW then, I fell asleep, had my alarm set for 3:40pm, so I can watch Sandown Supercars Practice, which I am now doing.
Watching telly, my Sodium Chloride is due to finish at 8:30pm then the nurse came in at 8:35pm and loaded up another 1,000mL bottle for overnight. Lucky me.
I told the nurse that I was tired, she said that you don't sleep well in hossy, when you get home, you will sleep a lot better.
Friday's meals ... they were YUMMA.
Friday brekky - scrambled eggs, tomato, bacon and 2 sausages plus orange juice.
Friday lunch - fish and chips with tartar sauce, plus desert with ice cream, strawberry slice, orange juice.
Friday dinner - Burleigh Bighead Beer, Big Beef sausage, onion gravy, Mash potatoes, plus desert with ice cream and Fruit salad, orange juice.
After Dinner, I watched telly, then went to sleep about 8:30pm.
About 10pm - Nurse Karla woke me to take my blood pressure and temperature..all good.
Blood Test Results between 26th August 2024 and 30th September 2024.
2:21am - Still flushing.
4:38am - Still flushing.
7:21am - Today's view.
8:00am - Brekky.
10:02am - Morning Tea.
12:26pm - Lunch arrived.
5:22pm - Dinner has arrived.
7:43pm - Still Flushing.
8:35pm - Flushing has nearly finished.
I slept plenty well, got up 3 times after midnight at 1:36am, 3:10am, 4:19am.
4:40am - Nurse (not Karla) took blood pressure aand temperature and blood prick - all normal. I was awake. The nurse asked if I wanted a coffee, it arrived at 5:12am.
5:12am - turned telly on.
5:30am - Nurse Kristen came and took blood for this morning's pathology test.
6:00am - only 221mL of Sodium Chloride left for this hospital stay. Yippee, when it finishes at approx 8:40am.
10:15am - I am now NOT connected to any tubes. Hooray...
10:45am - Dr Pat is very happy with my CLL numbers except for my Platelets, they still dropped, he is keeping me in until tomorrow and I will have another blood test.
My lymph node lumps on my neck are slowly decreasing.
My last 3 blood test before this morning was 13rd & 12th Sept and 26th August 2024.
my white cells dropped from 91.5 to 17.7 to 6.3 to 2.2 normal range is (4.0-11.0)
my Lymphocytes dropped from 88.8 to 11.77 to 2.24 to 0.55 normal range is (1.0-4.0)
Dr Pat is waiting for my Platelets to stabilize. They are stabilizing. The past 4 results were 113, 58, 48, 33 normal range is (150-400).
Watching Sandown.
Had a sleep during the arvo. As I am completely unplugged from my tubes, I am now just passing time until tomorrow's blood test.
If Dr Pat is happy with tomorrow's results, I can go home.
It was quite boring just sitting around trying to pass the time.
Saturday's meals ... they were YUMMA.
Saturday brekky - scrambled eggs, tomato, bacon and 2 sausages plus orange juice.
Saturday lunch - Lamb Rissole with gravy, mash potato, Veggies plus desert with ice cream, orange juice.
Saturday dinner - Burleigh Bighead Beer, Vegetable Soup, Braised steak with gravy, vegetables, mash potatoes, Bread roll and butter, plus desert with ice cream and Fruit salad, orange juice.
After Dinner, I watched telly, then went to sleep about 8:30pm.
About 10pm - Nurse Karla woke me to take my blood pressure and temperature..all good.
Blood Test Results between 26th August 2024 and 30th September 2024.
1:36am - Still flushing.
4:19am - Still flushing.
4:19am - Still flushing.
5:12am - Morning coffee.
6:02am - Still Flushing.
7:29am - Still Flushing.
7:31am - Brekky.
8:06am - Still Flushing.
11:32am - Relaxing watching Sandown.
Watching Sandown.
12:49pm - Lunch WAS Yumma.
5:16pm - Dinner.
I slept pretty well.
5:05am - Nurse (not Karla) took blood pressure and temperature and blood prick - all normal. I was awake.
5:15am - turned telly on.
5:30am - Nurse Kristen came and took blood for this morning's pathology test.
7:28am - Brekky arrived.
9:30am - Dr Pat is very happy with my CLL numbers except for my Platelets, but they are slowly increasing. He said that I can escape.
The Nurses did my paperwork and let me escape about 10:30am.
Jay picked me up and you didn't see us for the Dust.
7:28am - Brekky was YUMMA....as usual.
Same as last Tuesday.
Jay picked me at 10:05am from my unit.
Arrived at Pindara Private Hospital at 10:45am, I said goodbye and he headed home.
Went to reception and got admitted.
I walked to my ward, by myself. Renewed friendship with last week's Nurses and Catering staff.
The staff are brilliant.
After confirming that 'I was me' Chloe my nurse lead me to my private SUITE room #24. I thought that last week's room was brilliant, well this room, shat over it. Unreal.
11:00am - Alex the emergency doctor inserted a cannula into my right hand vein. The cannula is connected to a portable stand which has a battery/240V 'motor' which pumps the Liquid into the cannula. While the battery is charged, I can walk around dragging the portable cannula stand with me, eg: going to the toilet etc.
So for the next 5 hours, the cannula inserted 100ml of my triple strength CLL solution (obinutuzumab) slowly into my blood. Unlike last Tuesday, when after 4 hours I got the shakes and chills. This time no side effects at all.
Dr. Pat popped in to see how I was doing.
6:00pm - Chloe the nurse connected up a 1,000 ml of (Sodium Chloride 0.9%) to flush my 'Magic Liquid' through my blood system and kidneys. This will take all night. I slept pretty good, with only a couple of piss stops.
5:00am - Nurse Karla took blood pressure and temperature and blood prick - all normal. I was awake.
5:15am - turned telly on.
5:30am - A male Nurse came and took blood for this morning's pathology test.
7:32am - Brekky arrived.
9:45am - Dr Pat is very happy with my CLL numbers except for my Platelets, but they are slowly increasing. He said that I can escape.
Tuesday and Wednesday's meals ... they were YUMMA.
Tuesday lunch - Ham, cheese and Tomato sangas x 2 and orange juice.
Tuesday dinner - Burleigh Bighead Beer, Baked Fish with Lemon and tartar sauce, veggies, mash potatoes plus desert Fruit Salad with ice cream, orange juice.
Wednesday brekky - scrambled eggs, bacon and 2 sausages, orange juice.
The Nurses did my paperwork and let me escape about 10:30am.
Jay picked me up and you didn't see us for the Dust....again....
Blood Test Results between 26th August 2024 and 30th September 2024.
My Suite Room - #24.
My Suite Room - #24.
12:21pm - Lunch. Yumma.
12:37pm - Relaxing on the bed, watching Telly.
2:00pm - The 'Magic Liquid' is being pumped into my blood system.
5:52pm - Dinner.
5:05am Wednesday - Watching early morning Telly.
7:32am Wednesday - Brekky.
Jay picked me at 10:00am from my unit.
Arrived at Pindara Private Hospital at 10:35am, I said goodbye and he headed home.
Went to reception and got admitted.
I walked to my ward, by myself. Renewed friendship with last week's Nurses and Catering staff.
The staff are brilliant.
After confirming that 'I was me' Chloe my nurse lead me to my private room #20. Not a suite but similar to room #14, still very good.
11:50am - An emergency doctor inserted a cannula into my left hand vein. The cannula is connected to a portable stand which has a battery/240V 'motor' which pumps the Liquid into the cannula. While the battery is charged, I can walk around dragging the portable cannula stand with me, eg: going to the toilet etc.
So for the next 5 hours, the cannula inserted 300ml of my triple strength CLL solution (obinutuzumab) slowly into my blood. Still no side effects at all.
The Pharmacist called in and explained the new tablets designed especially for my CLL called 'venetoclax'. I will start taking the venetoclax tablets from next Tuesday 1st Oct.
2:30pm - Dr. Pat popped in to see how I was doing. He is very happy with results.
Tuesday 8th Oct - My 'magic liquid' will be infused at a Day Hospital in Southport, closer to home, I should be able to drive there and home on the same day, which will make life easier.
The chef Alfonzo made, in my opinion, his best meal, baked fish...absolutely YUMMA.
I watched telly until 8:30pm, then tried to sleep. Not my greatest night sleep, but on a par, with my past hospital sleeps. I woke numerous times for toilet breaks.
Finally conceded defeat and woke up for good about 4:30am.
4:30am - Turned telly on quietly
5:00am - Nurse Lisa took blood pressure and temperature and blood prick - all normal.
6:20am - Melisa from QML came and took blood for this morning's pathology test.
7:32am - Brekky arrived.
Tuesday and Wednesday's meals ... they were YUMMA.
Tuesday lunch - Spagetti Bolognese, Bread roll and apple juice.
Tuesday dinner - Burleigh Bighead Beer, Baked Fish with Lemon and tartar sauce, veggies, mash potatoes plus desert Fruit Salad with ice cream, orange juice.
Wednesday brekky - scrambled eggs, bacon and 2 sausages, orange juice.
9:45am - Dr Pat is very happy with my CLL numbers except for my Platelets, but they are slowly increasing. He said that I can escape.
The Nurses did my paperwork and let me escape about 10:30am.
Marg picked me up and you didn't see us for the Dust....again....
Blood Test Results between 26th August 2024 and 30th September 2024.
My Room - #20.
The view from my Room - #20.
12:29pm - Flushing out my veins.
1:27pm - The 'Magic Liquid' has started.
The "Magic Liquid".
3:10pm - The "Magic Liquid" is still going.
5:05pm - The 'Magic Liquid' has nearly started.
5:33pm - Dinner - Yumma.
5:33pm - Beer - Yumma.
7:44am - Brekky - YUMMA.
This was my 1st visit to the Southport Day Infusion Centre.
I left home at 12:30pm for my 1pm appointment and drove Spotto by myself, as it was not an overnight stay.
I parked over the road in a carpark and walked 100m to the main entrance, walked up the stairs to reception, gave my info to Michelle, who I spoke to on the phone.
The Centre was busy as, so I had to wait for approx 70minutes, before being lead into the large room, where all the patients were sitting in comfy lounge chair with cannulas stuck in their arms. A nurse put a cannula in my left hand and started flushing me with 100mL of Saline. When the flushing finished the nurse connected up approx 300mL of Obinutuzumab aka 'Magic Liquid'.
It started at approx 3:00pm and I sat there with my iPad to fill in the time and took the an occassional pitstop. It finished at approx 6:15pm. Alex the nurse, finished doing my paperwork and booked me in for all my future appointments. Every 28 days until the end of July 2025.
While sitting there, around 4:30pm, I heard thunder and looked through the window and it was pissing down. I thought 'Shit", I'm going to get drenched walking to Spotto.
When I left at approx 6:30pm, I walked to Spotto with only a few drops of rain hitting me. Drove home and had tea and relaxed.
Next appointment is Tue 5th Nov @ 8:00am, I chose 8am.
Blood Test Results between 4th October 2024 and 24th April 2025.
The patient being flushed while sitting in the comfy chair.
2:23pm - flushing with Saline.
3:08pm - pumping the 'Magic Liquid' into me.
3:45pm - pumping the 'Magic Liquid' into me.
4:14pm - pumping the 'Magic Liquid' into me.
The 'Magic Liquid'.
4:43pm - pumping the 'Magic Liquid' into me.
The Infusion room, everyone had finished and gone home, except me.
The Infusion room.
The Infusion room.
5:36pm - nearly finished.
This was my 2nd visit to the Southport Day Infusion Centre.
I left home at 7:15am for my 8:00am appointment and drove Spotto by myself, as it was not an overnight stay.
I parked over the road in a carpark and walked 100m to the main entrance, walked up the stairs to reception, gave my info to Michelle, who I spoke to on the phone.
The Centre wasn't as busy as when I was last here. The advantage of having an early start. I didn't wait at all and was lead into the large room, to seat #20, where all the patients will be sitting in comfy recliners with cannulas stuck in their arms. Natham (nurse) put a cannula in my left hand and started flushing me with 100mL of Saline. When the flushing finished Jenny (my other nurse) connected up approx 300mL of Obinutuzumab aka 'Magic Liquid'.
It started at approx 8:26am and I sat there with my iPad to fill in the time. It finished at approx 9:18am. Jenny told me that the machine pumped at a faster rate that the display showed. So the nurses monitored me until 11;15am, to see how I felt. All Good. No side effects at all.
After leaving, I had to visit Dr Pat at 1pm, as I was running early, I had a coffee and toastie at the Pindara Cafe, as Dr Pat's suite is located about 10 meters away, in the Pindara Hospital. Drove home and had lunch and relaxed.
Next Infusion appointment is Tue 3rd Dec @ 8:00am.
Blood Test Results between 4th October 2024 and 24th April 2025.
The patient being flushed while sitting in the comfy chair.
8:26am - flushing with Saline.
8:54am - pumping the 'Magic Liquid' into me.
9:17am - pumping the 'Magic Liquid' into me.
The "Magic Liquid".
Lunch at Pindara Cafe.
This was my 3rd visit to the Southport Day Infusion Centre.
I left home at 7:15am for my 8:00am appointment and drove Spotto by myself.
I parked over the road in a carpark and walked 100m to the main entrance, walked up the stairs to reception, gave my info to Michelle, who was the receptionist at my last infusion.
The Centre wasn't as busy as when I was last here. The advantage of having an early start. I didn't wait at all and was lead into the large room, to my same seat #20, where all the patients will be sitting in comfy recliners with cannulas stuck in their arms. Alex (nurse) put a cannula in my right hand and started flushing me with 100mL of Saline. When the flushing finished Jenny (my other nurse) eventually connected up approx 300mL of Obinutuzumab aka 'Magic Liquid' at approx 9:50am. The delay was caused by the late arrival of my 'Magic Liquid'. I wasn't greatly annoyed as I sat in my comfy recliner with my iPad to fill in the time. It finished at approx 12:40pm. Jenny connnected the Saline for a final flush. I walked out about 1:30pm. All Good. No side effects at all.
After leaving, I had to visit Dr Pat, he was happy with everything and so was I. Drove home and relaxed.
Next Infusion appointment is Tue 31st Dec @ 8:00am.
Blood Test Results between 4th October 2024 and 24th April 2025.
At 8:25am, it wasn't very crowded.
At 9:40am - The patient being flushed while sitting in the comfy chair.
9:50am - started pumping the 'Magic Liquid' into me.
10:16am - increased speed still pumping the 'Magic Liquid' into me.
10:53am - increased speed still pumping the 'Magic Liquid' into me.
11:17am - increased speed still pumping the 'Magic Liquid' into me.
1:19pm - flushing with Saline.
The 'Magic Liquid'.
This was my 4th visit to the Southport Day Infusion Centre.
I left home at 7:15am for my 8:00am appointment and drove Spotto by myself.
I parked over the road in a carpark and walked 100m to the main entrance, walked up the stairs to reception, gave my info to Michelle, who was the receptionist at my last infusion.
The Centre wasn't as busy as when I was last here, I was the 2nd person in the room. The advantage of having an early start. I didn't wait at all and was lead into the large room, to my same seat #20, where all the patients will be sitting in comfy recliners with cannulas stuck in their arms. Nathan (nurse) put a cannula in my left hand and started flushing me with 100mL of Saline. When the flushing finished Annabel (my other nurse) connected up approx 300mL of Obinutuzumab aka 'Magic Liquid' at approx 8:35am. It finished at approx 12:10pm. Annabel connnected the Saline for a final flush. I walked out about 12:35pm. All Good. No side effects at all.
After leaving, I drove home and relaxed. I didn't need to visit Dr Pat as he was on leave.
Next Infusion appointment is Tue 4th Feb @ 8:00am.
Blood Test Results between 4th October 2024 and 24th April 2025.
At 8:30am, the patient is primed and ready to go.
At 10:05am - you could have shot a canon off and not hit anyone.
by the way.... nice foot.
8:39am - started pumping the 'Magic Liquid' into me.
9:19am - increased speed still pumping the 'Magic Liquid' into me.
9:39am - increased speed still pumping the 'Magic Liquid' into me.
10:38am - increased speed still pumping the 'Magic Liquid' into me.
12:04pm - nearly finished the 'Magic Liquid' into me.
12:14pm - flushing with Saline.
Wendy the volunteer coffee lady was brilliant.
The 'Magic Liquid'.
which is super strong and needs to be pumped into me, VERY SLOWLY.
It should have been my 5th visit to the Southport Day Infusion Centre, but it was my 1st visit to Pindara Private Hospital Day Infusion Centre, as the renovations were just completed yesterday. I was the 1st patient to use the newly renovated centre..
I left home at 7:00am for my 8:00am appointment and drove Spotto by myself.
I parked in the multi level carpark of the Pindara Hospital, and walked to the main entrance, where I was led to the 'newly renovated' Day Infusion Centre. Strange, all my staff were there. Michelle was running the reception area as usual.
The Centre looks good, smaller room but very nice. I was the 1st person in the room. The advantage of having an early start. I didn't wait at all and was lead into a room, to my seat #2. The comfy recliners were there, waiting for me to have my cannula stuck in my hand. CC (nurse) put a cannula in my right hand and started flushing me with 100mL of Saline. When the flushing finished Annabel (my other nurse) connected up approx 300mL of Obinutuzumab aka 'Magic Liquid' at approx 8:35am. It finished at approx 11:35am. CC connnected the Saline for a final flush. I walked out about 12:15pm. All Good. No side effects at all.
After leaving, I walked up one level, to visit Dr Pat, whose room is on the 1st level of Pindara Hosspital, so I didn't have to drive to see him. Very convenient.
Dr Pat was happy with my progress and said that was my last infusion and to have another blood test next Monday.
Dr Pat will ring me after Tuesday 11th Feb with my latest blood test results and my next course of action.
Blood Test Results between 4th October 2024 and 24th April 2025.
At 8:03am, the patient is primed and ready to go.
Smaller rooms - only about 8 recliners in this room.... Nice knee..
8:02am - The Flush has started.
8:16am - started pumping the 'Magic Liquid' into me.
8:48am - increased speed still pumping the 'Magic Liquid' into me.
9:21am - increased speed still pumping the 'Magic Liquid' into me.
9:50am - increased speed still pumping the 'Magic Liquid' into me.
10:23am - maximum speed still pumping the 'Magic Liquid' into me.
10:55am - maximum speed still pumping the 'Magic Liquid' into me.
11:36am - nearly finished the 'Magic Liquid'.
11:54am - flushing with Saline.
The 'Magic Liquid'.
The Flushing juice.
Wendy the volunteer coffee lady was brilliant.
My recliner was next to a window.
I visited Dr Pat today, normal appointment after my latest Blood test.
I asked Dr Pat if I was cured. He said that I am in remission but will continue to monitor my various Blood Numbers.
Dr Pat has increased my Venclexta tablets to 2 per day, which equals 1/2 a dose. I am now having fortnightly blood tests to monitor my blood levels against the 2 tablets.
Next appointment is 29th April 2025.
Blood Test Results between 4th October 2024 and 24th April 2025.
I visited Dr Pat today, normal appointment after my latest Blood test.
I asked Dr Pat if I was cured. He said that he can't say CURED but I am definitely in remission.
YIPPEE, you bloody ripper.
I must continue to take my tablets and now my fortnightly blood tests have got out to monthly, as Dr Pat is happy with my numbers. He will continue to monitor my Blood Test results.
I am continuing to take 2 tablets of Venclexta per day.
Next appointment is 19th June 2025.
Blood Test Results between 4th October 2024 and 24th April 2025.
Every 28 days I go to the Southport Day Infusion centre to have 300mL of my "Magic Liquid" infused into my veins.
On 3rd October, I started my special tablets, which were specially created to treat people like me that suffer from CLL.
These tablets are called Venclexta and I will have to take them daily for 12 months.
The price for these tablets are absolutely unbelieveable for the starters box which consisted of
1st week 7 x 10mg tablets.
2nd week 7 x 50mg tablets.
3rd week 7 x 100mg tablets.
4th week 14 x 100mg tablets.
The price was $1,648.49, I paid $0.00 as we had reached the PBS Limit.
Each monthly script consists of 120 tables which cost the Pharmacist $7,406.82, I paid $0.00 as we had reached the PBS Limit.
Con the Pharmacist at the Day Infusion Centre, told me that the Pharmacist has to order and pay upfront the full amount before being refunded by the Government, once someone has a script to be filled. Consequently, not many Pharmacist have these tablets in stock and when you need then, they have to be ordered in.
The dosage is as follows:
1st week take 2 x 10mg tablets daily.
2nd week take 1 x 50mg tablet daily.
3rd week take 1 x 100mg tablet daily.
4th week take 2 x 100mg tablets daily.
5th week and for the next 12 months take 4 x 100mg tablets daily. Shit that's a lot of tablets.
11th Dec - Dr Pat said to drop tablets from 4 to 2 x 100mg daily, as my blood marrow was dropping more than needed.
The Venclexta Starter Pack - Cost $1,648.49.
The Venclexta Starter Pack.
The Venclexta Starter Pack - Cost $1,648.49.
The 12 month Venclexta Dosage schedule.
The monthly 120 tablets - cost $7,406.82.
Weeks 1 and 2 tablet packets.
Weeks 3 and 4 tablet packets.