I have had so much fluid build up in the last 2 weeks. I did not recognize my legs at all. Last night they started mild leg compression massage. This morning they weighed me. This magic bed does it. Anyway, I estimated that I was carrying 30lbs of fluid. That is very difficult to do much of any movement.

Before they weighed me, I was being adjusted in my bed and was able to pull my knees to my chest. This surprised me as that was basically impossible before. Along with the massager they also gave me diuretics too. It was so obvious to me the difference this morning.

Then the weigh in. It indicated that I am 12kg/26lb higher than my normal weight!! So, my initial estimate of 30lbs of fluid was quite a bit light. Just imagine trying to move 35-45lbs of extra body weight in an extremely weakened state.

The Physical Therapy people came back today. We were able to get me up using only a walker. I walked out of the room and down to the nurses station and back again. PT people following with a wheelchair.

I am now sitting in the chair in my room and will be able have lunch again sitting up.

Good progress again today.

Well my goal for today was to get out of bed and downstairs. I didn’t quite make it, but with the assistance of this device I was able to get into a chair!! I cannot tell you how much this means for me!!

I was finally able to give Aidan his birthday gifts. I think he liked what I chose. ❤️❤️❤️❤️

A great step forward today. More goals for tomorrow!!

Well have a look at this. Not much left hanging there!! That is a good thing. Everything is leveling out.

Magic Max came to replace my port access today. They should not stay in more than 7 days. He is the Pro. Replaced it with an audience of 5 very quickly and painlessly.

I spoke to the Dr and have made plans to get out if this bed for some time tomorrow. I am physically unable to do it myself, so with the help of the hoist and care aides, I hope I can get downstairs and outside for a better visit with Aidan, Dana and anyone else.

The last couple visits have been better but obviously not ideal.

There is a gown protocol in place. Aidan thinks he is a banana 🍌

Looking forward to tomorrow!!

I had another roll of the dice and got another 🐍. Since this upper gi seemed to be clear, they are now looking at the lower gi. So a colonoscopy is now on the table. As an in patient I can get it next week. If I am an out patient it will take much longer. As with all colonoscopies I will need to do all nasty prep. So now that I have started to eat again, I’ll have stop again. So going home is still a question mark for now.

Sadly the time with Dana and Aidan is evaporating 😣😣😣

This was my IV pole This morning. Since the scan they have taken a bunch of medications down so it looks better now.

The popsicle really hits the spot!! ❤️❤️❤️❤️

I had the scope this morning as scheduled. I was sedated and do not recall it but all ok. Dr did not find anything significant again. I expect more info later. Best part is I am now able to eat again!!!

More climbing back up the ladders!!

Better progress today.

While here I feel like I am playing a huge game of Snakes and Ladders. I have been slowing climbing up the short ladders, improving bit by bit. Then I rolled the next dice I and landed on a long SNAKE 🐍 and slid a long way backwards.

Yesterday morning I had a soso night. I had what I thought was a plan for pain management. But then shift change and I haven’t seen my nurse yet. I asked for the hydromorphone as I was supposed to have it so that I can eat. I was just informed by a Care Aide that I am not to have anything by mouth. No idea what is happening 😣

Nurse just came and gave me hydromorphone. Told me the no food was because I will have an ultrasound at 11. My liver enzymes had been rising and the ultrasound should shed some light on things. Possible blockage or stone.

The nurse tried to do my regular bloodwork and Well my port suddenly stopped blood return. I needed 5 vials today. The lab had to come to poke me. Took 3 times but managed to get the blood they need. The nurse is asking the Dr for orders for the clot buster Alteplase, so hopefully that resolves that 🤞 It feels like one thing after another right now. 🥴

More crap happening. I had another BM and it had blood in it. Lab people came back and needed 7 more tubes!! Port still not producing. They couldn’t get enough. They are sending someone else. They asked if I had had a transfusion in the past few months. It just keeps getting better!!

Best News today. My nurse said her instructor was here in the hospital and she called him in. He is an Superstar!! He accessed my port, did some magical movements and voila!! Boom, boom 7 vials out lickety splick!! I could have kissed him!! 💋 💋

It has been a long tiring day. I am pretty exhausted. So it might be best for me to just rest the rest of the day. Dr was just here. He took me off anything by mouth again. He feels like I have a minor upper gi bleed and they may do a scope so no food for that. They are giving me medication for the bleeding and more IV fluids. Hemoglobin is not too bad, but I did sign a consent for a transfusion if necessary.

Last night hemoglobin dropped to 7.9. Dr wanted it to be 8.5. They decided to give me 1 unit of blood. That started about 11:45. Just finished recently. BP has risen and all vitals in good shape. I rested not too badly during in the infusion with no adverse effects. The scope may still happen. They are interested in any bloody stool as well. Hopefully today will be less eventful! ❤️❤️❤️❤️

So, there is the “Coles Notes” version of my yesterday. I am comfortable, but still no idea when I can go home.

This is from yesterday afternoon.

I have been here for a week now with my port accessed. I have been told that it can stay in for 7 days before changing. My night nurse last night said it would be replaced today. I spoke with my day nurse this morning and she seemed to think only the dressing. When the Dr came I asked her about it. She said she would discuss with the nurse. A bit ago 3 nurses arrived with all the gear to replace it. It became clear to me that none of them had ever actually done it before. We had a little hiccup, but between the 3 of them and tips from me we are able to complete the task. They were sooo excited and left chattering away like they had won the lottery!! Hahaha win win🏆

From last night.

I seem to have a pattern. I manage to eat breakfast and lunch pretty well. By the time dinner arrives so do the cramps. I went to the bathroom just before they replaced my port accessed and noticed a tightness around my chest just below the bra line. I mentioned it to the nurses but they didn’t seem concerned. When night shift came on it was still tight and the cramps were strong. Ara, my nurse called the Dr and rickety slick a line up of services paraded into my room. EKG, portable x-ray and bloodwork. Nothing turned up thankfully. After all they gave me hydromorphone again and was able to sleep well. I was even able to roll onto my side to sleep. They just took vitals, which were good and bloodwork. During the evening episode my BP was around 160ish. I do feel stronger this morning.

From this morning.

I just had a visit from the Occupational Therapist. She arranging for some equipment from the Red Cross. Also setting up some home support visits from Fraser Health. Initially coming in twice a day morning and evening to get me up and dressed and then ready for bed. She is also bringing me info on meal options. Things are moving forward. No definite discharge date, but it does seem likely for tomorrow. ❤️❤️

It seems that my electrolytes are all out of whack. They are pumping lots into me through my IV port. They have removed the additional IV they inserted. Everything goes in and out through the port, so no more poking!!!

Nausea and cramping continues and feel it is related to food intake. I am trying to eat, but my stomach isn’t tolerating much. The food is certainly not too bad at all, for those able eat. Certainly better than I remember. We are trying to manage the nausea etc.

Rested well last night again.

Nicole and Alex brought Dana and Aidan directly here from the airport on Friday. Had a nice little visit then and they came back for a bit yesterday. Aidan is quite intrigued by all the bags hanging from the IV pole.

As it was his 6th Birthday recently we had planned a family party for yesterday. This continued without me. But that is OK.

Looking for more improvement today.

I had a very comfortable night. Since I am no longer in the ICU I am not monitored constantly for vitals signs. That means all the numbers are no longer critical. They have removed all of the sticky pads that were attached to me and when I get up I only have the IV pole to take with me.

Breakfast was much more appropriate for me. Some rice crispies and some scrabble eggs. I nibbled but certainly did not finish.

We are still struggling to control the nausea as that seems to affect so much for me. So trying to keep on the meds for that.

I had a call with Dr Johal, my oncologist. He was wanting to schedule appointments with me next week. I said NO. I am not diverting a second of my family time for cancer appointments.

That’s all for now.