I can tell you I was not in a great mood when I went to bed Thursday 1st October. Sleep is such a fragile thing, so hard to come by for one so high on steroids, anxiety and chronic illness. It has taken years, I mean literally years, to develop a functioning sleep routine and even when it goes a kilter according to my unplanned life tilts such as has happened lately, I still have a sleep routine of sorts that works. In a sense.
What never helps my routine is the increased anxiety of events such as the extremely last minute cancellation of my treatment half an hour after I had settled into the seat of The Terminal (my label for the chemotherapy treatment centre). This kind of event will keep my wired for many hours ‘past my bedtime’. By this I mean I could be wide awake until 3am the next morning, instead of falling asleep at the usual 9:30pm. Given the fact that I was now expected to be at The Terminal at 8am the following day, Friday 2nd October, to have a second attempt at my first Rituximab infusion, the potential for havoc was extreme.
I cannot express enough how my sanity, ability to cope with my health situation and still function semi-well with other living souls, as well as overcome mentally the physical inflictions that come with my numerous ailments, all rely heavily on my daily acquisition of eight hours sleep. Six is doable. Less than that runs dangerously close to roid raging and breakdowns. I need a decent sleep. Those of you that are chronic too will attest to how much difference a sleep can make.
Its not even 7am. I barely had 4 hours sleep last night. This time dad is coming and mum is having a sleep in. Dad loves #transperth so today I will show him the phone app. As to this second attempt at #rituximab (#rituxan), we will see. Five hours is a long time for an infusion of anything. Seven? Gee help me! #RoyalPerthHospital #chemotherapy #Lupus #rheumatoidarthritis #Arthritis #SystemicLupusErythematosus #vasculitis #CerebralVasculitis #cerebritis #autoimmune #Invisibleillness #chronicillness #butyoudontlooksick
I don’t like to take sleeping medication, but I won’t avoid it when I know it may be necessary. I have perfected the art of which one to take for various situations. I know the ones that last 4, 6, 8 or 12 hours. The ones that bring me startling to attention after a rest and the ones that leave me in a zombie coma for three days following. I know which have pain attendance side effects, or calm my anxiety and depression, clear my head and throat and nasal passage and I know the ones that bring me into a stupor 6 hours after I have woken. I chose the one that gave me 4 hours with two drowsy hours after I woke up. In all I felt relatively okay by the time Da and I had reached the city and were sharing our first coffee for the day over his cooked breakfast.
Thankfully we were right on time at Royal Perth Hospital, as was the nursing staff. I was first in thus had the pick of the seats and chose the one off to the side that had an empty space across from it and was only two metres from the big screen television. These two considerations were not for myself of course, but for Da. Within half an hour of arrival I had my cannula in, sadly in my left elbow, and the necessary antihistamine and Panadol cocktail was already sending me back to sleepy town (through four shots of coffee mind you!).
Things I discovered over the next seven hours were:
The nurses didn’t like my veins. So much so that they denied that there were any good ones except for my elbows. This is beside the fact that numerous nurses in other situations have no trouble at all locating veins in hands, forearms, upper arms, wrists.
The nurse that starts with you really would prefer to stick a needle wherever they are able themselves, rather than ask another nurse with a different set of needle-sticking abilities to have a shot. I wonder what would happen if you put up a challenge kind of situation? It’s probably going to create more issues and give off the wrong attitude. Don’t want to peeve the chemo nurses!
Every time the line bends (in my elbow) it pauses the infusion due to the potential for distal occlusion. Then the intravenous (IV) pump will beep loudly and constantly until a nurse comes over to check the line and restart the flow. This takes about 1-2 minutes each time and the line was sensitive so this occurred every 15-20 minutes.
I bend my elbow a lot. For things like holding a cup, resting in a chair, holding a book or my phone, eating. Even when I am not using that arm, it is awfully difficult to keep it straight to the extent they require.
One of my happy snaps from the Friday #rituximab infusion. Two days on and I'm still feeling ok. I've bloated up a fair bit, which I'm thinking is fluid retention. I'm trying some tricks I know to remove excess fluids. I am not feeling much different but I have had more #visualauras than in the past few weeks. We are feeling so #positive about this treatment. We KNOW it will work. #vasculitis #CerebralVasculitis #cerebritis #Lupus #SystemicLupusErythematosus #rheumatoidarthritis #Arthritis #chronicillness #autoimmune #Invisibleillness
When I cannot bend my elbow I cannot read, do study or a crossword.
When you are in Royal Perth Hospital the powers of communication and connectivity are attempting to smite you for every breath you have ever taken. There is no WiFi, 4G or 3G reception. There is H (whatever that is) but to get to it with a ‘Smart’ phone (not so smart here) you basically need to hope you can make a phone call that connects and lasts long enough without requiring action on your part so you can bring it up through to 4G (I’m still not sure how this mechanism works….) and then you get the internets and text messages.
To summarise this whole event I will tell you very simply that my 1000ml infusion of Rituximab was over by 3pm. Ma had traded places with Da after they had shared lunch somewhere in town. Ma took me home at 3:30pm and we spent the afternoon in front of the television watching comedy show re-runs.
During the infusion I felt okay and following the infusion I also felt okay, the only drawback was a heightened need to visit the toilet frequently which is to be expected with the amount of liquid I took in that day. I have had mega fluid retention in the days since, but this is the only side effect of the treatment that I have experienced so far.
I feel so blessed!
Distal Occlusion: When the downstream line pressure exceeds a preset value on the patient-side of an IV line (a kink in the tubing outside of the body)