From rq, a most beautiful art work: So out of that comment conversation earlier this morning/today, I made some art that looks completely unrelated but came out of the emotions. Also it is called “Life is Not a Ringing Bell” and I have decided to dedicate it to Rick. Such a beautiful piece, filled with quiet emotion and love. Life is not ringing a bell, but it is having a partner who loves you enough to nag you into doing what you should, and having a friend who can express that so well. Thank you is so very inadequate. Click for full size.
© rq, all rights reserved.
Click for full size.
The Walcheren Campaign involved little fighting, but heavy losses from the sickness popularly dubbed “Walcheren Fever”. Although more than 4,000 British troops died during the expedition, only 106 died in combat; the survivors withdrew on 9 December. […] Along with the 4,000 men that had died during the campaign, almost 12,000 were still ill by February 1810 and many others remained permanently weakened. Those sent to the Peninsular War to join Wellington’s army caused a permanent doubling of the sick lists there.
As for ‘Look Ass Peeps’ (Lucas Pepys):
In 1794 Pepys was made physician-general to the army, and was president of an army medical board, on which it was his duty to nominate all the army physicians. When so many soldiers fell ill of fever at Walcheren, he was ordered to go there and report. As a consequence the board was abolished; but Pepys was granted a pension.
Okay. I’m going to start with reiterating that what I write here is about my experience with cancer treatment, and my feelings about it, it’s in no way general or applicable for painting with a vague and broad brush.
I am not sorry in the least little bit for not celebrating the first round of chemo being done. I am not sorry for viewing this as a completely non-celebratory event, nor for feeling this way. There was relief, and a fleeting sense of being free. That last one didn’t last long. As usual, the chemo has left me feeling half past dead and seriously dehydrated. So, I’m back again today for IV fluids. I’m only going because Rick refused to let up asking about going in for fluids. These days, he easily recognises the signs of dehydration, so I conceded. Right now, I’d rather deal with being half past dead than going back to 7. (In my hospital, the infusion suite is on the 7th floor.)
It doesn’t feel to me as if I’ve finished; there’s always something dragging you back, and even if I could manage to stay away from 7, appointments and schedules arrive by mail and phone, and of course there’s preparation for the next round of treatment. There’s also the knowledge that you’re going to get completely battered down again, which leaves you with a deep desire to simply stay the fuck away from hospitals altogether.
This all ties back in with the ever relentless positivity business. There’s the bell, which is in infusion/chemo suites all over, you’re supposed to ring it the same number of times as your cycles (in my case, it would be eight), while everyone else in infusion applauds; for me, that’s a hellish notion, and I was more than relieved in managing to slip out quietly. I learned that other infusion/chemo suites have a certificate/diploma thing, which is even worse than the damn bell. Most of us don’t require false encouragement, we all have our own reasons to keep showing up for treatment, even when we are past sick of it, and long to walk away and forget. You experience resignation soon enough in treatment, and simply getting through one phase is just that, nothing more. What most cancer patients are looking toward is the final door, that light at the end of the fuckin’ tunnel, when you get to walk away for real. For other cancer patients, there is no exit door, they’ll be in treatment until they die, and in such cases, it’s really callous and rotten to get all positive and celebratory over a single phase of treatment. Chirpy, trite sentiments do not help in the least, and they give people something empty to say without having to expend any thought on the actual person and their situation. Sometimes, there just isn’t anything to say, and that’s okay. Silences don’t have to be filled every single time, and silence is better than a perky positivity landing in compleat awkwardness.
This is not to say I don’t understand someone having joy over getting through one phase or being happy for me; it’s that I don’t feel that joy myself. I’m still looking at months worth of treatment and pretty much the rest of this year being dominated by cancer. I want my life back, and if I get that, then I’ll celebrate. Quietly.
And now I have to get ready to return to 7.
As of yesterday (Friday) at 9:14 am, the pump was off and I had finally finished my eight cycles of chemo. The last two cycles had to be reduced, just to get me through, but the independent IV fluids helped more than anything toward this latter stage. Some people sail right through their initial chemotherapy; others don’t. My friend in colon cancer treatment had such a rough time with hers that it was cut short and she was moved on to radiation. Me, I got pushed back time after time, especially as the experience with neulasta was a very bad one for me. There aren’t any rules for getting through chemo, everyone is different, so if you find yourself in treatment, don’t go thinking there’s something wrong with you or the way you’re reacting to things. It’s not predictable, just take things one cycle at a time.
The last two weeks I had been having one hell of a time with nausea and a low level migraine haunting behind it. I was being good, taking my Zofran and all that, when it turns out that Zofran can, and often does, cause headache. :sigh: It would be so fuckin’ nice if people told you this before hand, rather than two weeks after dealing with shit. Zofran is a standard chemo prescription, so if you’re already prone to headaches, you might want to head that one off at the pass and request a different anti-nausea drug. For the most part, besides the dexamethasone, I found OTC Dramamine to work well enough.
In my infusion suite, there’s a tradition for reaching the end of your chemo – there’s a large bell at the doorway, and you’re supposed to ring it the same amount of cycles you’ve been through. On Wednesday, I went in with a large bag filled with freshly baked brownies, apple crumble, and banana cake for everyone. I was allowed to slip out quietly with no fuss. Sometimes, bribery is a good thing. ;) Walking out that day, I could not get outside the hospital fast enough, it felt as though I was breaking out of prison. When you’re in treatment, it just becomes this endless round of repetitive appointments: Register/Lab/Oncology/Infusion, which not only wear you down, but they take over your life. Everything centers around them.
For all that Wednesday felt like a joyous prison break, I only get three weeks out. My oncologist wants me started on Xeloda (oral chemo) and Radiation on June 20th. I think I’ll be meeting my new oncologist then too. Maybe. Appointments are up in the air. My oncologist is retiring, so I’m getting a new one. Then it’s off to radiation and that particular doctor, who I haven’t seen since all this started. The urge to run away is high again, because everyone I’ve talked to has told me that if anything, radiation and xeloda is much, much worse than chemo. Oh yay. Given how easily my skin burns, I am so not looking forward to that one. Well, all I can do now is try to enjoy my three weeks. It would be nice if we had Spring, or even Summer here, but it’s been day to day storms, clouds, wind, cold, and basic grayness.
Some notes on personal care here. One thing I don’t think I’ve mentioned as of yet: scent sense. There are rules in Infusion suites, such as No Hot Food, and that goes for everyone, including nurses. That’s because the smell of hot foods can trigger bad things in chemo patients, and that goes for all other types of smells, too. If you’re going to be in treatment, or be hanging around with someone in treatment, go smell free. If you can’t manage to give up something scented, like a shampoo, make sure it’s an extremely light scent (absolutely not food based, like strawberry or something), with no throw (meaning it doesn’t extend past your person). Outside of that, no perfumes, and no smelly lotions please. You never know what might set someone off, and give them one of the worst days of their life.
Chemo left me with extremely thin hair, which has been quite the shock, given how thick it used to be. I’ve kept the length, but the thinness, oy. I wasn’t getting any new growth, either. I had read that taking biotin helped with the peeling nails business, and while I’m not big on supplements, figured it couldn’t hurt. I’ve been taking 5,000 mcg a day for a while now. Didn’t do a damn thing for the nails, but my hair started growing again, albeit very slowly. My hair had also gotten so dry it was brittle, no moisture anywhere. Conditioners did not help. IV fluids did help somewhat, but my hair felt and looked damaged beyond repair. I came across this shampoo at Big Lots:
L’Oréal Extraordinary Oil. Unbelievably, it helped. Really helped – for once, my hair felt and looked more like it should, with a nice sheen instead of brittle dullness, and it felt smooth and a bit moist. Not enough, but better. Continued use with conditioner has been getting it back to normal. It has a Sandalwoodish scent, which is light, and doesn’t last, so it was safe enough for infusion. It helped enough that I can use a brush now and then; for most of chemo, I had to give up a brush and go with a pick and comb. That’s another thing – don’t stubbornly cling to your usual brush or other method of dealing with your hair, use whatever causes the least amount of damage, and pulls the least amount of hair out – you’ll lose enough of it as it stands. When chemo doesn’t cost you all of your hair, it will take around 50% of it, at least. I’ve lost more than that.
Voyager sent me the Cloud 9 Naturally for badly damaged skin, and that stuff is close to a miracle. I had very deep cracks in the soles of my feet from the 5-fluouracil, and applied this, put on a pair of socks, and went to bed. Next day, they were almost completely closed. In dealing with the 5-fluouracil loss of fat pads in the fingertips, the Curel Itch Defense lotion was great (and still is), and IV fluids probably helped the most with that little problem.
That’s all for now. I’m going to go off and pretend all this crap is over.