I am so fatigued and sad ... I went out for a walk (at 7.45am) and had to return after 200 metres because of Brother Sun setting off my photo-sensitivity. I feel like nothing I try to do helps and I have not the energy to implement any of my ideas to improve the situation.
So sorry Galilit - learn about bats? when my daughter had CFS/ME and was photosensitive as a teenager I started learning about bats, because it was something I could do at dusk or dark when she could cope with going out.
Oh how clever of you, CK, positively lateral thinking - we do have fruit bats (who will be coming to eat our ripening lychees in a few days) ... and also several owl species
Bats are awesome. We get them in our garden in foie gras land. They have the added bonus of eating the mosquitoes which fly straight out of Satan's bottom.
This morning I had to be at the hospital early for an MRI of my left thigh, in hopes that it would yield some clues concerning the horrible pains in my left leg. Then I went to the other hospital for spinal X-rays (why, I'm unsure, since I just had MRIs of that territory a couple of weeks ago) and waited an inordinate amount of time to be seen by a hotshot neurologist. (Now I get to wait some more for his conclusions.) Then I went home, and had my final session with the wonderful physical therapist who has done so much to get me moving again. It's been a rich full day!
Glad to hear some good news @Galilit and @Rossweisse. (Gallit, the bats sound fun, but please don't eat them. All sorts of problems can result. Ask Dr Karl Langstrom.)
So...today I got my Doctor's clearance to continue my treatment for another 2 months. The 3 or 4 tumors on my front ribs have even got smaller! The cancer-markers in my blood are wayyy down too.
I explained about the recent fatigue and suggested perhaps a few days of steroids might help. He said dryly that steroids "were not clinically indicated". So I said "Look, I really need some help here". He mentioned another drug and I said that I'd not heard much about it. "I just drink gin and tonic", I said. At which he laughed and said "Now that's a steroid I could approve!"
So that's a step in the right direction ... no question!
"Trebles all round!" as we Private Eye readers say
There's nothing yet from the hotshot neurologist. But I was warned today that the tumor that sits where my femur meets my hip has grown, and that there is serious danger of the femur fracturing. That would be extremely bad news, and probably life-shortening. It would definitely ruin my day.
A virtual glass of Pinot Noir can, of course, count as a virtual analgesic. (I'm finishing off a glass even as I type.) But virtual hugs are a good thing, too!
I've got a phone call I don't want to make. This afternoon a message was left on my answerphone, by one of my cousins. I don't know the chap, we could pass each other in the street and not recognise each other. But he made the effort to get to my mother's funeral in December, and he is family. Anyway, since then he's been diagnosed with the same type of cancer as me, and told it's terminal. The right thing to do is ring him back, but I really don't want to. And that makes me feel guilty.
@ Robert Armin, sometimes in life all we can do is take care of ourselves. That is not a thing to feel guilty around. It is doing the best that we can to make the most of what little energy we have. From the BCP. "This is another day, O Lord, I know not what it will bring forth, but make me ready, Lord, for whatever it may be." The last line is "And if I am to do nothing, let me do it gallantly. " Not saying you should not ring our cousin back, but rather do not feel guilty about giving only what you feel you can.
Feel guilty. Go buy something you normally wouldn't or go somewhere to visit that you really enjoy and make the phone call. You'll remember the good bit. You've got this. If you want me to call him for you, just let me know. Sorry that he's got it and sorry that you have to manage this. Could you send him a letter?
No advice, Robert Armin, but sometimes, like Jacob wrestling, we only have the physical and emotional energy to deal with one adversary - like cancer - at a time. You will know when you are ready to deal with this new one.
Does a prayer have to travel further to reach God when it's coming from Hell? Surely not. Praying for Gallilit, Ross, Robert, and Robert's cousin. Also: grieving for the lovely, gentle parishioner who died this week: she was our one-woman altar guild for two big churches in two small villages, and many counted her their best friend. She loved Compline.
Prayers ascending for @Amos's parishioner, too. It sounds as though she will be greatly missed. May she rest in peace and rise in glory, and may her memory be a blessing.
I'm just back from my second MRI of the week, as my docs - including the hotshot spinal surgeon - try to figure out what's causing the sporadic but exceedingly intense pains in my left foot, ankle, and leg. (Oh, and the toes have all gone completely numb.)
I didn't know this technician, which is, at this point in my career at that hospital, unusual. She started out faux-cheery ("Have you ever had an MRI before? This is what to expect"), and looked impatient when I told her that I have a hard time with discomfort in that department's large, unpadded wheelchairs, because my pelvis is in pieces, and then when I tried to explain about the pain when my leg is moved.
But I stayed friendly and cheerful. She seemed pleased at my ability to lie still for long periods of time - yes, I am a veteran! - and was very kind and thoughtful when I finally emerged from the machine, asking how she could best help me. Then she took the pillows that had been under my head and lower legs, and arranged them on the seat and back of the wheelchair. "You don't have very far to go," she said, "but we can make you more comfortable." Maybe it was because she'd just spent the last 70 minutes taking picture of said pelvis and better understood the problem. And being friendly and cheerful - and smiling, especially when my mask came off for the scans - never hurts.
Bravo, @Rossweisse! 70 minutes of MRI is a feat to challenge the most austere of ascetics, and to accomplish it with the help of the Jesus Prayer deserves the highest possible praise. I do hope your latest endurance enables all those specialists to identify the cause of your pain and find a remedy for it. And in the process I'm sure you taught that over-cheery technician a few valuable lessons too.
Well, the hotshot spinal specialist thinks that he has figured out my problem: The theory is that some of the fractured pelvis is sitting on my left sciatic nerve, causing the awful pain. I am to see a pain management specialist; that was cheering news because that doc has really helped a friend of mine from my cancer support group.
Now I’m waiting for the first doc’s people to send a referral letter to the second one’s people; the latter won’t even talk to me without it. I am eager to get going on this!
My scan was fine. I was able to see that there is a blockage, which I knew, but it was interesting to see it. And it was so much fun to be out of the house, and talking to people again, if only briefly. (Next week a group I've been part of for ages are getting together for a distanced social event. I very much want to go, but am trying to work out if it's a reasonable idea or not.)
And delighted to hear of some progress for you @Rossweisse. I know nothing has been sorted yet, but I feel better when I have some idea what is going on.
Oh, good, Robert. (Yes, it's odd, but things like tumors and whatnot can be quite interesting when they're inside one.)
I'm still waiting to be able to make an appointment with the pain specialist. <sigh> But I have a distanced outdoor social event in a bit, a gathering of the neighbors, and the weather is cooperating. Something to anticipate with pleasure!
@Rossweisse I am so glad to hear that the cause of your pain has been identified, and I do hope an ppointment with the pain specialist occurs soon. If he was so helpful to your friend, maybe he will be given the ability to put a healing finger on the spot, so to speak.
Comments
Gratitude, Ross!
Praying for all mentioned here.
Glad you're still battling on Rossweisse
Then I'll do it all again next month!
This morning I had to be at the hospital early for an MRI of my left thigh, in hopes that it would yield some clues concerning the horrible pains in my left leg. Then I went to the other hospital for spinal X-rays (why, I'm unsure, since I just had MRIs of that territory a couple of weeks ago) and waited an inordinate amount of time to be seen by a hotshot neurologist. (Now I get to wait some more for his conclusions.) Then I went home, and had my final session with the wonderful physical therapist who has done so much to get me moving again. It's been a rich full day!
I explained about the recent fatigue and suggested perhaps a few days of steroids might help. He said dryly that steroids "were not clinically indicated". So I said "Look, I really need some help here". He mentioned another drug and I said that I'd not heard much about it. "I just drink gin and tonic", I said. At which he laughed and said "Now that's a steroid I could approve!"
So that's a step in the right direction ... no question!
"Trebles all round!" as we Private Eye readers say
Prayers ascending for @Amos's parishioner, too. It sounds as though she will be greatly missed. May she rest in peace and rise in glory, and may her memory be a blessing.
I'm just back from my second MRI of the week, as my docs - including the hotshot spinal surgeon - try to figure out what's causing the sporadic but exceedingly intense pains in my left foot, ankle, and leg. (Oh, and the toes have all gone completely numb.)
I didn't know this technician, which is, at this point in my career at that hospital, unusual. She started out faux-cheery ("Have you ever had an MRI before? This is what to expect"), and looked impatient when I told her that I have a hard time with discomfort in that department's large, unpadded wheelchairs, because my pelvis is in pieces, and then when I tried to explain about the pain when my leg is moved.
But I stayed friendly and cheerful. She seemed pleased at my ability to lie still for long periods of time - yes, I am a veteran! - and was very kind and thoughtful when I finally emerged from the machine, asking how she could best help me. Then she took the pillows that had been under my head and lower legs, and arranged them on the seat and back of the wheelchair. "You don't have very far to go," she said, "but we can make you more comfortable." Maybe it was because she'd just spent the last 70 minutes taking picture of said pelvis and better understood the problem. And being friendly and cheerful - and smiling, especially when my mask came off for the scans - never hurts.
And I'll join you in a nice big G&T tonight, Galilit.
Now I’m waiting for the first doc’s people to send a referral letter to the second one’s people; the latter won’t even talk to me without it. I am eager to get going on this!
And delighted to hear of some progress for you @Rossweisse. I know nothing has been sorted yet, but I feel better when I have some idea what is going on.
I'm still waiting to be able to make an appointment with the pain specialist. <sigh> But I have a distanced outdoor social event in a bit, a gathering of the neighbors, and the weather is cooperating. Something to anticipate with pleasure!