I had my weekly Velcade injection at Springfield yesterday. No adverse reaction as usual, although some of the people on the forums make it sound like a close relation of death by lethal injection. Maybe they just don't like needles? It's curious, I read a lot of those things and can't remember anybody complaining about all the injections and canulas and blood test needles. I've had more things stuck into me these last few months than in as many past decades. Except, perhaps, for the three-monthly B12 shots I've been having for several years now. Maybe it's because we all know that with myeloma the lengths of our lives, and the healthiness of what's left of them, depend on just going through with whatever our doctors order, like it or not.
I've just thought of another regular one, if only once a year - I have a 'flu jab booked for the 18th, in the steroid-free week between chemo cycles 2 and 3. Doctors advise that it shouldn't be close to steroids.
As yesterday was a Velcade day, tonight is the first of the week's two sleepless dex nights. Either I'll stay up until 4 or 5 and then get two or three hours, or I'll go to bed early (by my standards) and wake up unable to sleep at 5 or 6. At which point, I'll get up. Luckily there's nothing in either of our diaries for the early morning, so not much time pressure either way. Sue has a wind band gig at 11:00, which means her leaving about 10:00. I can deal with clearing up the remains of breakfast after she's gone.
Someone identifying only as Richard (could be one of two, I don't know yet) has suggested Betadine for the finger splits. It's an antiseptic and appears to be basically good old iodine available in a wide variety of forms. Neither Amazon nor Google have made it easy to decide what version to go for. An antiseptic seems a good plan as these tiny splits must offer an open route for infection before they heal. Think I'll go to a Boots (big chemist chain) later and see if a pharmacist there can justify his/her existence with some good advice apart from "You should see your doctor". It would be a first. OK, maybe a second.
Thursday, 5 December 2019
Wednesday, 4 December 2019
Advice
From the chemo nurses while in for my Velcade / Bortezomib injection today:
Finger splits: when going to bed, apply generous layer of Pliazon and cotton gloves over the top. Sleep that way. Cotton gloves on order from Up The Jungle, won't get much sleep anyway (first of two Dex nights) before they arrive.
Corner of mouth sores: Vaseline. Which is what I'm doing anyway.
And advice from me to them: get your phone system sorted out! I called four times this morning (to check appointment time) between 08:30 and 12:00. Only got answering machine, left two messages, not received. They know they have an issue (much the same yesterday) but that's my primary number for problems so it's important that it works!
Finger splits: when going to bed, apply generous layer of Pliazon and cotton gloves over the top. Sleep that way. Cotton gloves on order from Up The Jungle, won't get much sleep anyway (first of two Dex nights) before they arrive.
Corner of mouth sores: Vaseline. Which is what I'm doing anyway.
And advice from me to them: get your phone system sorted out! I called four times this morning (to check appointment time) between 08:30 and 12:00. Only got answering machine, left two messages, not received. They know they have an issue (much the same yesterday) but that's my primary number for problems so it's important that it works!
Early diagnosis
The more I learn about this disease, and the more stories I read from fellow myeloma patients, the more obvious it becomes that early diagnosis is very important.
I was lucky - we could have got there a few weeks or even a couple of months earlier than we did, but it wasn't a matter of years. And some people do go through years of intense refractory back pain (and etc.) before anyone thinks of Myeloma as a possible explanation. By that time skeletal damage is serious with spine and hips almost crumbling away, and kidney & liver functions will probably be severely impaired. Even with the best treatment, some of that damage will never be recovered and access to stem cell transplant may be limited.
Anyone with back pain / bone pain that doesn't respond to rest & painkillers should be tested for paraproteins as a matter of routine.
I was lucky - we could have got there a few weeks or even a couple of months earlier than we did, but it wasn't a matter of years. And some people do go through years of intense refractory back pain (and etc.) before anyone thinks of Myeloma as a possible explanation. By that time skeletal damage is serious with spine and hips almost crumbling away, and kidney & liver functions will probably be severely impaired. Even with the best treatment, some of that damage will never be recovered and access to stem cell transplant may be limited.
Anyone with back pain / bone pain that doesn't respond to rest & painkillers should be tested for paraproteins as a matter of routine.
Tuesday, 3 December 2019
New side effect?
I've developed a couple of small skin sores in the corners of my mouth. The right one has been there for a while and the left one is new. Treating with Vaseline for the moment, will consult the chemo nurses while in for the next Velcade shot tomorrow. I could report it to Yellow Card, but as they completely ignored my last report, why should I bother?
Monday, 2 December 2019
02/12/19 (2)
Did the Zometa thing and more bloods at Springfield this morning. For some reason it took longer than the last couple of times - we were in there over two hours. I was reminded of a minor side-effect (of something, not sure what) that I haven't mentioned before - along with the dry mouth I also get excessive salivation. Seems odd, but that is what happens.
Good short walk in the park afterwards, followed by lunch in the Central Cafe. Bright low winter sun through the trees - very pleasant to walk in, a pain for driving. A reminder that you can't have it all...
Back in Springfield day after tomorrow (Wed) for the next round of Velcade & Dex. And so it goes.
Today's diuretic pill doesn't seem to be having quite as dramatic an effect as yesterday's. Not yet, anyway.
One Laxido per day for the last couple of days. That seems to be getting close to the right dosage.
Good short walk in the park afterwards, followed by lunch in the Central Cafe. Bright low winter sun through the trees - very pleasant to walk in, a pain for driving. A reminder that you can't have it all...
Back in Springfield day after tomorrow (Wed) for the next round of Velcade & Dex. And so it goes.
Today's diuretic pill doesn't seem to be having quite as dramatic an effect as yesterday's. Not yet, anyway.
One Laxido per day for the last couple of days. That seems to be getting close to the right dosage.
02/12/19
After four days of diuretics, things starting to happen. Took the pill early afternoon yesterday, spent the next few hours urinating every twenty minutes or so - ample volume and almost water-clear colour. Then - with some relief - things calmed down a bit. Maybe a lot.
Just out of shower and much easier to put slippers on - the swelling around the ankles still very much there, but the bulges over the insteps and around the heels much less pronounced. And when I got up yesterday morning, things looked almost normal.
After breakfast today, back to Springfield for the monthly Zometa infusion. We'll try for a walk in Admiral's Park after that - if I feel up to it. Spent too much of yesterday heaving heavy oil-filled radiators around and I'm not convinced that my low back is really up to it these days. Just hoping that I won't wake up unable to move like in the old days of back trouble.
Just out of shower and much easier to put slippers on - the swelling around the ankles still very much there, but the bulges over the insteps and around the heels much less pronounced. And when I got up yesterday morning, things looked almost normal.
After breakfast today, back to Springfield for the monthly Zometa infusion. We'll try for a walk in Admiral's Park after that - if I feel up to it. Spent too much of yesterday heaving heavy oil-filled radiators around and I'm not convinced that my low back is really up to it these days. Just hoping that I won't wake up unable to move like in the old days of back trouble.
Sunday, 1 December 2019
Diuretic
The Furemoside is starting to work - if volume, frequency, and colour of urine are anything to go by. But no obvious impact on the oedema as yet. Patience, patience...
A neighbour (another Sue) strongly recommended O'Keefe's Working Hands hand cream for the finger splits, and brought a little sample pot round. Boots carry it, she said, although I don't recall ever seeing it on display. Certainly worth a try, but I don't want to confuse things with the Pliazon.
A neighbour (another Sue) strongly recommended O'Keefe's Working Hands hand cream for the finger splits, and brought a little sample pot round. Boots carry it, she said, although I don't recall ever seeing it on display. Certainly worth a try, but I don't want to confuse things with the Pliazon.
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