SO, lots going on this fortnight. Tons of Tests, Lots of weird disasters and brain glitches, More Barium than I thought it was possible to ingest, General Life Stuff, Morgaine’s Birthday, Checking out a university, Enablement Assessment, Audric starting school (FINALLY!), and, not to be in any way discounted: Raquel and Malia coming to visit!
Unsurprisingly, I am now on Rest and Recovery orders by the family. 2 days of “Sit Yourself Down and Move Very Little, Cancer Woman!” Would make the trade off in a heartbeat, though. I like being active, even if I have to stop and be very inactive from time to time.
Ok, well I guess I will start with the medical stuff to get that out of the way.
This week had way more testing than usual. I started out on Monday, taking a trip down to Guy’s Hospital to have my teeth evaluated by a special dental unit called “Sedation and Special Care”…. doesn’t really scream DENTIST, does it?
The reason I needed the test is because there is a rare but serious complication for the Bone medication they want to put me on. If you have to have a dental extraction while on it, it can cause the bone in your mouth to become necrotic! So, basically, if there is anything they think is borderline, they just go in and remove it before the meds come into play. For that reason, they tell you the appointment could take up to 3 hours! Luckily, I have a very expensive US mouth, and there were no issues at all. I was in and out in less than an hour. Also, it turned out that the hospital is right next to a gourmet outdoors Market in downtown London. So, Raquel, Malia and I shopped for herbs and cheeses and had a lovely Fish lunch before my appointment, then wandered home on Uber at our own pace. One of our Uber Drivers was…. a bit of a character “Whooo, Girl! Let me tell you those US New Orleans girls are Wild, aren’t they!?” But, we made it home safe and dry, which was great.
The Market and Lunch:
MRI and CT Scan
Friday, I was scheduled with an MRI at 8am and CT scan at 9. Which meant we eventually got out of there around noon. It was a long morning of testing.
So, basically, this set of tests is meant to figure out if the medication I have been on has been doing anything at all to help my situation. I am a little concerned that maybe it hasn’t been helping as much as they want because I am still having a fair number of Seizure/brain symptoms, and those seem to be the red flag. If this set of medication is NOT working, we have to re-evaluate. And, while they say there are other good options, it is still a bit scary because each one that doesn’t work means there are fewer options- and not all of them were created equally at the outset. So, you know, brain spa, as amusing and interesting as it sounds, may not be a great long-term control. And, I am still not sure if there will be a way to convince the very conservative NHS to try me in any of the promising studies they have going on…. So, stay tuned there. I should have more info on Tuesday. However, I have to just keep reminding myself that having more info doesn’t actually *change* the info- it just means we can make more informed decisions.
The actual testing was sort of boggling. Last month I received a bottle in the mail that said “Drink Me” sort of like Alice in Wonderland. It was sort of startling cause it was just a bottle sent in an envelope in the regular post…. I am pretty sure the Tylenol Scare in the US would preclude that. The instructions were to drink it in three equal amounts, morning, noon, evening with 8 OZ of water each time. Only, the bottle totally trolled us. The liquid was soooo thick that we kept thinking we had poured 1/3 out, and actually had done like 1/6! So, David gave me my dose in the morning. Then at noon we realized that there was still almost a full bottle! So, I poured out 1/2 of what was there….. Then at dinner we looked and….. 2/3 of the bottle was still left! What the! So, moooore barium. But, got it all down eventually.
The next morning, Raquel and Malia met me at 7:15 (UGH!) and we took the bus over to the the Lewisham Hospital. I take the bus to the most local hospital as it is only a few stops down the road. I don’t want anyone who has been so amazingly kind at sponsoring my UBER trips to think I am not using the service. I am, and it it is soooooo useful when I have to go to London for most of my testing. Really and truly, it has been a huge blessing.
Since we arrived before 8, much of the hospital was not actually active, yet. It was actually sort of interesting watching it wake in the morning. My first stop was the the MRI. I needed to have part of the test with contrast. But, the lady who is good with veins was stationed at the CT station. So, my radiology technician arranged for me to have most of my MRI up front. Then, took me over to the CT station where they inserted the canula before the test. And, SCORE- third time in a row they have gotten my vein on the first try! I am starting to very very cautiously think perhaps my veins have gotten a little easier now- knock wood! On the other hand, the nurses kept complaining that she found *too* good a vein cause it bled alllll over. Also, now I have this bruise, which is really quite striking in its color.
However, the shocker was when I arrived at the CT area they handed me a full liter of: BARIUM! Seriously? And they said “it is best you drink it as quickly as you can so it will coat your insides fast and you can get out of here”. A FULL LITER OF BARIUM. Yipes! I asked and they told me that I was not actually going to be hugely radioactive. But, I do check the mirror for the Rudolf Nose thing every once in a while.
Interesting Factoid: Barium pretty much comes out exactly as it goes in. Only it seems to multiply as it goes….. Honestly, not recommended if possible.
The MRI and CT scan also both had contrast dyes. So, I was a seriously walking medical chemistry set all day. We worked it out, and I was taking a total of SEVENTEEN different medicines that day.. How they managed to make them all not interact to the point that I exploded is a bit vague, but I am grateful that it doesn’t seem to have actually happened……
On the other hand…..
A Series of Disasters
One of the things that happens when I am on my 2 weeks of chemo meds is that my focus sort of dissipates and my energy levels drop.. Basically, I turn into an exhausted toddler wandering around saying “Me Do It” only not really capable of that much thought at one time. So, over the course of the last week, I had an amazingly robust and daily series of startlingly DUMB and often MESSY events. For instance:
- I managed to wake up from a nap, reach for my water, break my bedside plastic bin of drawers, and throw the water allll over our electrical converters from US to UK.
- A couple days later I essentially did the same thing- only this time I splashed them INTO the sockets on the wall. It sizzled and has been turned off ever since.
- I managed to put together a huge pot of Bread Pudding Mixings and drop it squarely on the floor when no one was around to help me clean it up (until Raquel arrived, which was seriously above and beyond).
- I tried to order a present for Raquel while she was here- only did not ever hit “proceed” on my order and so, well, didn’t actually order it and of course it did not arrive.
- I completely locked us out of the house by not bringing a key with me. Luckily again, Raquel and Malia had a safe place for us to hang out until Audric got home to let us in.
- And none of that covers things I really didn’t have any control over, like having my legs give out (one of my meds has the lovely side effect of very weak legs) while I was trying to get onto UBER or the buses and having so many asshats wind up blocking me from getting to the Priority Seats and/or strait up hit me with their school bags and groceries…. Still sort of hating the buses. But, glad UBER is an option when I am going more than a couple miles. Actually just walking the neighborhood can be dangerous. I had some guy swerve into the parking lot ramp I was crossing nearly hitting me, then stare at me incredulously and do a little gun shooty sign like “I could have hit you you imbecile”. Never mind that I was hobbling across and was 1/2 over when he gunned it! It gets scary when you really can’t dodge.
I have also been fighting another bout of “oral thrush” which is a painful yeast infection of the mouth. I got it when I had the radiation, but not sure why this bout is happening. I guess just anything that affects the balance of your body can muck with things like that. In any casse, I am on meds, but it is still bad enough that I have blisters on my lips. Another one of those unrecommended things…..
Also, unfortunately, the “Palmar-plantar erythrodysesthesia or PPE” has started to kick in enough that it is uncomfortable. And a bit ugly. This is a side effect of my main Chemo and makes the skin on my feet and hands get red and raw and can cause blisters and other fun stuff if not properly treated. Right now it looks like this on me. Sorry for the grossish, though honestly it looks better here than in person.
Of course, while all of that was going on, we had Normal England Life Stuff! This list would include things like:
- Someone from British Gas checking out our “Hobs” (gas lines to the heat and stove)
- Two guys who looked a lot like stereotypical retired Mafia Guys putting in concrete pylons to finally fix our fence.
- Trying to track down whether I am eligible for any benefits here in England (still unclear, but we have an appointment with HR to try to find out more….. Would certainly help if we could get it working, knock many many many pieces of wood).
- Some skeevy water company workers repairing a section of concrete that our landlord had been petitiong to get repaired because the water company apparently broke it…. The workers were kind enough to leave all their ciggiebutts… Such thoughtful gentlemen.
- Getting Audric ACTUALLY ENROLLED IN SCHOOL!!!!! (WOOOOOOOOT!) 7 Months and he is FINALLY ensconced in what seems, knock more wood, like a perfectly reasonable- if mighty-testosterone-laden- school about 2-3 miles away. His first day not one, but two buses passed him by, but luckily he was able to run and make it to school on time anyways!
- Morgaine Turned 19!!!!
- David and Morgaine went out and checked out another university on her potentials list.
- Audric getting his orthodontics restarted (short answer 6 months, because they sort of stagnated, but they will be lovely when there are done. Also, after 7 months, an adjustment apparently makes his mouth quite sore)
- David’s diabetes eye-check and a couple other med appointments for him
- Cleaning up the last of our German Financial Entanglements (knock wood)
- Audric Turns 16 on Tuesday, but since it is a long weekend, we are pretending TODAY is the DAY- so Happy 16 Young Man!!! Woot!
Weird little Medical Thingy
My Chemo nurse set up a referral that I believed was meant to be an Occupational Therapy program to help us get the house set up for making it easier for me to move about. However, that turned out to be wrong. What it actually was was an assessment to see if I needed things like help showering or people to bring in food to keep me alive- essentially, it is for folks who have no support and would die without assistance. Good program, no doubt, but not what I need. She was able to order a couple of items that might come in handy- a thing that makes the toilet higher so puts less strain on my legs when I try to stand up. Also a “commode” which means essentially a temp toilet you can keep downstairs in case you somehow get stuck unable to climb and don’t want to try to take care of your business in a corner somewhere. Hopefully I won’t need that, but she said it was good just for peace of mind, so we will stick it in a corner somewhere and, again, hope it is not an issue we actually need to deal with…..
Biggest Social/Emotional issue right now
So what are we struggling with right now? My inability to safely cook. I LOVE to cook. It is something I have always done- in large part because I am a picky person who wants all my foods the way I want them. But, also because I just really enjoy the process of putting together dishes and meals that will be enjoyed by me and others.
The problem is, that for weeks at a time, I cannot safely cook. And, when I am even close to dangerous things in the kitchen, I make everyone very nervous— once again, see the disasters. David in particular gets very protective and restrictive. Partly, I think, this is because the kitchen is NOT his happy place. But, mostly it is because I really am a hazard. I am working hard to teach people. But, it is frustrating for me, because I can so easily see what needs to be done and yet, conveying 40 years of knowledge is not something easily done in the course of a few meals. It will take a while to teach- and really only Audric is all that interested.
So, I wind up watching my favorite foods be made in not quite the way I want. And I invariable try to get too close or otherwise interfering. Then I wind up getting admonished for interfering and risky behavior. I understand the desire to protect and the fact that no one else takes such pleasure in cooking. But, it is an issue that we are having to work through.
The Absolutely Fabulous Part of the Week
Raquel and I have been friends as long as David and I have- we all met in college and we consider Raquel and her family to be just as much our family as anyone connected by blood. In our circle, we call it “Pack”. The fact that she and Malia were able to come out and visit me for a week- while Raquel is still recovering from two major back surgeries- was just an amazingly wonderful gift. Since we were both gimpy, we spent a lot of time just kicking back at restaurants and cafes and chatting and catching up. Which, honestly, was just about perfect. And Malia and Raquel were able to help me get to and from appointments and on and off buses. HUGE help when absolutely needed because Audric had just started school, and I was going to be alone too much for the last week of my chemo. (see all the DISASTERS if you aren’t sure why that is such a big deal).
We had such a nice time- I am about to spew my blog with food Pr0n. But, know, it was the company that was the important part.
Tuesday- Meet with my doctor and find out the results
After that? – We shall see