A dear friend of mine, whom I met via the blog many years ago, has been dealing with an unusual and very serious condition for several months. She asked if she could post an appeal on the blog to see if anybody else has had a similar experience or can help her in any way. If you have any information that might be useful to Clare in this very difficult moment, please let me know, or leave a comment on this post. If you want your comment to remain private, I will definitely respect your wish and send it only to Clare.
Thank you very much.
Here is what she wrote:
I’ve had smouldering Myeloma for 13 years without treatment.
Over the past year and a half I have become more and more out of breath. I thought it was just Asthma. I had an echocardiogram last March which looked normal. Suddenly, in July, my legs swelled up, and I felt even more out of breath and tired. My cardiologist is concluding that I must have Protein Amyloid deposits in my heart from the Myeloma. They couldn’t see any on a heart MRI, however, so I have a heart biopsy coming up to be 100% sure.
I just wonder if anyone has AL Myeloma or any experience of Amyloids from Myeloma.
Hey there! This is going to be a kitty post…My cellphone is full of photos of my cats (though there are a million of ’em!), so today I thought I’d share some recent ones, since I have nothing much to report…Here goes! 🙂
Stefano and I spent a bit more than three weeks in Scotland in August, one of our longest holidays ever. What a fabulous trip…
We landed in Edinburgh on August 4th, the day The Royal Edinburgh Military Tattoo started. It was spectacular. My photo (left) doesn’t do it justice. Even though I’d watched a few videos of the Tattoo on YouTube before leaving for Scotland, I had no idea it would be so engaging…so exciting, even. We thoroughly enjoyed it, as clearly did the other spectators. Definitely one of the best times of my life!
Ring of Brodgar, a huge ceremonial site dating to the 3rd millennium BC
After that first weekend spent in Edinburgh, a city we both adore, we began our road trip. We drove up to Scrabster, located on the northern coast of Scotland, where, the following morning, we caught the ferry to Orkney.
Orkney…what can I say about Orkney? Its group of Neolithic monuments, which was proclaimed World Heritage Site in 1999 by the Unesco, with the name “Heart of Neolithic Orkney,” were absolutely fascinating: the Standing Stones of Stenness (which my automatic spell checker keeps changing to “Sterness” Stones… 😆 ), the Ring of Brodgar, and Skara Brae (Skara “Bread”??? Hahahaha, must admit that my spell checker does have a sense of humor).
Skara Brae, the best preserved prehistoric village in Western Europe…older than the pyramids, even…! Check out the stone dresser and beds…quite amazing, eh? 5000 years old!
These three, plus the Maeshowe Chambered Cairn (which we didn’t manage to get tickets for), are among the most important Neolithic sites in Western Europe. How about that?
Another incredibly interesting site, where you can actually see archaeologists at work, is the Ness of Brodgar, a huge complex built 5000 years ago. When I was younger (40 or so years ago!), I wanted to become an archeologist, and I studied archeology (and anthropology) as an undergraduate, so the Ness of Brodgar dig was dear to my heart…
Marwick Head RSPB nature reserve
The day we arrived, the first thing we did was hike up to Marwick Head where, sigh, we didn’t see any puffins (too late in the season), but where we did manage to see young gannets testing their wings. They would fly out from their nests on the cliffs below us, turn around in a semicircle, and head back to the nest. Over and over again. Oh, and the fulmars, too. So much fun to watch. Too bad my photos didn’t turn out…
Yesnaby Castle sea stack, Orkney’s second most spectacular sea stack after the Old Man of Hoy…and what a lovely scenic coastal walk to get there, too.
Oh, and the views of the North Sea. From up there, we could see all the way to the Old Man of Hoy, the tallest sea stack in the UK (note: you get much much much closer views of this sea stack on the ferry from Scrabster to Stromness, but on a clear day you can see a tiny thingy in the distance from Marwick Head, too). Anyway, I could have sat on the Marwick cliffs for days…In fact, I would still love to be there. 😉 So relaxing.
So, yes, Orkney was wonderful, magical, but we did have to leave. After five days of exploring the island, we returned to the mainland and began our very slow descent towards Edinburgh.
As I always do when we are about to go on a trip, I had made a list of things not to be missed–castles, mainly. We prefer ruins, generally speaking, but we did see well-kept castles such as the Castle of Mey (the Castle of “Men,” says my spell checker…hahahaha!), where we got some amusing royal gossip from one of the friendly guides.
Nope, sorry, my lips are sealed. 😉
As interesting as the tour was, my favorite castle on this trip was not Mey. It’s hard to choose one in particular, but I have two very special mentions.
My first mention definitely goes to Castle Sinclair Girnigoe, see photo on right, which actually consists of the ruins of two castles, one from the 15th century, the other from the 17th. It’s located on a rocky promontory and has small sea stacks all around it, as you can see (the ruins are in the back of the photo). Spectacular.
Tolquhon Castle
My second mention has to go to Tolquhon Castle whose tower dates to the 1400s. It is also said to be haunted, like many of the castles we visited, although we didn’t see any ghosts (now, wouldn’t THAT have been fun?). One of the photos I took (these are all from my cellphone, btw) does look like the face of a creature from another world, doesn’t it? Whoooooo! Lots of house martins flying around in the courtyard and rooms…Lovely little birds…
Okay, if you ask me about my favorite castle garden, well, that’s much much easier: the walled garden of 16th century Crathes Castle, no question. Lovely flowers and plants.
A close second for me was Castle Fraser where I was “attacked” by red admiral and peacock butterflies…Obviously, I’m kidding…it was truly a magical experience.
Red Admiral, Castle FraserPeacock butterfly, Crathes Castle
I’ve never seen so many butterflies, flying all around and above me, which reminded me a bit of the Hitchcock movie “The Birds,” but in a pleasant, peaceful way. Magic. If I begin posting photos of flowers and butterflies (took a million photos of both!), I’ll never get done… 😉
We also visited several stone circles, both on Orkney and on the mainland: Orkney’s Ring of Brodgar and the Standing Stones of Stenness, of course, but, back on the mainland, also Loanhead, East Aquhorties, and a few others. I find stone circles fascinating in general but I have to admit, my all-time favorite (well, of the ones we’ve seen thus far, and we’ve visited maaaaany) is Avebury in southwest England. Orkney’s Stenness Stones are much much older than Avebury, but they didn’t have the same, almost magical and relaxing effect on me. No idea why that is, but there you go.
Pennan, with its beach of perfectly, or almost, round pebbles…
And then…oh I can’t even remember or begin to list how many lovely coastal towns we visited, with stunning views over the North Sea…Pennan, Cullen, Portsoy, Gardenstown and so many more.
Best name for a castle? Hehe, definitely Findlater Castle, near Cullen. FindLater…Gotta love it!!! 😎
And the beaches on the North Sea…wow, what can I say? Oh dear, I have to stop reminiscing now. Time for dinner.
I hope everyone is doing well! Take care! See you soon! Ciao!
Stefano likes to keep a note of anniversaries, birthdays, and other important events, but sometimes I would really prefer not to be reminded of certain dates. This morning, for example, as I was checking my phone calendar, which I share with Stefano, I saw that six years ago today we had Piccolo, our extraordinary and much beloved 14-year-old male cat, put to sleep.
It hit me…tears…grief…
No matter how much time goes by, it is still hard…
But no, I don’t want to remember the period around Piccolo’s death, or, even less, the terrible day he died, one of the worst in my life. I want to remember him when he was well, happy, with us (almost all his life).
Piccolo…how funny and smart and loving he was (I have written a bunch of posts about him, incidentally). And sometimes I look at what one of our cats is doing and think “Hey, Piccolo used to do that,” and it really makes me smile. There is a bit of Piccolo in all of them, especially Pandora…
My Piccolo
Here is a photo of him…not a great one, but it will have to do…taken in the days before I got a decent cellphone, methinks…
Well, we (and our 8 cats!) actually moved back home a few weeks ago, but I have been so busy that my head has been spinning. Plus, big news: I have a cataract in my left eye, so I can’t stay at the computer for very long. Luckily, my normal routine hasn’t been affected, and I can still drive, but I will have to get the cataract removed in the autumn, for sure. No biggie (says the gal who had hip replacement surgery, hehe…btw, my new hip’s doing great!). It will get done…but first, we’re going on vacation! In about ten days or so…can’t wait.
Funny how time just flies by, as I mentioned in my June post. Is it because I’m in my early 60s (just had my 62nd birthday a few days ago, actually…and to think that years ago, after my diagnosis, I believed I’d never make it to 50…hah!)? I mean, does time go by faster as you get older? I’ll have to look that up. 😉
Puffin with sand eels, near the Isle of May, Scotland, June 2023
Anyway, I finally have access to my beloved computer…not that I have time to do any research now, except for research concerning our upcoming holiday (hehe), but this means that in September I should be writing more often–famous last words! 😆
Okay, so Stefano and I went to Scotland in early June. We spent most of our holiday in Anstruther, a small lovely coastal town in Fife, about an hour northeast of Edinburgh (where we also spent a few fantastic days…ahhh, I love Edinburgh!), yes, Anstruther where we took two boats trips to the Isle of May and Bass Rock to see puffins and also gannets and various other sea birds. Fabulous. It was one of our best holidays ever, and I can’t wait to go back next year. Such a treat…My cataract let me post only one photo, see above…
Anyway, guess where we’re going in August? Yes, that’s right…back to Scotland. 😉 But this time we’re heading north, to Orkney…and from there, driving back southeast-ish, slowly, we will be visiting castles, circles of stones, lovely coastal villages and so on. Oh, but first, the day we land in Edinburgh, we’re finally going to the Tattoo…we bought tickets months ago…Now that should be fun!
Anyway, I hope everyone is doing fine and dandy! Take care! I have to sign off now, or I will get a headache (cataract, uff!)…Ciao, Margaret
Hello! I have a bit of time before leaving for Scotland…yes, yes, yes, Stefano and I are officially on holiday today…off for a week to the coast of Scotland to see our beloved puffins and other fabulous sea birds, gannets in particular.
I’m sorry I haven’t been posting at all, but time is flying past me, and I am so busy with a million things that I just haven’t been able to sit down and write anything.
But…I’m fine, the rest of my tests were okay, just a wee bit of the Bence Jones protein in my urine, but that happened once before years ago, then it disappeared, so I’m not concerned. We’ll see what happens with my next tests. Creatinine, fine, by the way. Apart from the BJ, every thing else is pretty much stable, if not slightly better compared to my last tests. So, all is good over here.
Anyway, I hope everyone is doing really well. Oh, before I forget: I’ve received a bunch of queries, but I just haven’t been able to reply to anyone. I will try when we get back. Let me remind you that you can do a Search of my blog…
Take care, everyone…I hope I get some good photos of all those sea birds that are waiting for us! Ciao!
Hi everyone! Time flies, doesn’t it? Sorry about not writing in so long…but I can assure you all that I’m fine, Stefano is fine, the kitties are fine. All is well, in sum.
Except…we’re still not back home yet. That means that I don’t have access to my wonderful PC (if I’d had any idea it was going to take this long, I would have moved my computer over here, duh), and I have to use my iPad now to do anything, including write this post. Don’t get me wrong, I love my iPad, but I have all my data and stuff on my PC and, well, it’s just harder to work on the iPad…at least, for me. Pazienza…
I have received a lot of queries but just haven’t been able to answer because of the above and lack of time. I’m over at our house most days, supervising the work and doing some cleaning….I threw away all the articles I used for my Ph.D thesis, e.g…..boy, that was hard, but it had to be done. Bam bam bam, into the recyclable garbage. Sorting through stuff (I mean, why did we keep so many empty boxes and junk in general????) is taking up a huge amount of my time now. Plus, the cats need attention. And Stefano!
Most of the answers to your queries can be found in my posts, all you have to do is a Search of my blog. But I do apologize for not getting back in person to so many of you…
I had blood tests done about 10 days ago…and here is a funny not-so-funny story. There is a new computerized system now for making lab appointments. Before, I just called the blood center, spoke with an actual human being, and made an appointment. Now it’s all done online: you get on a website, type in ALL your data (believe me, it takes heaps of time since you have to plug in all the numbers on your doctor’s certificate….such a ridiculous system, IMO. Plus, if you want to go to another lab, you have to start over…Who was the genius who came up with this new system???). At any rate, in the end, you get a number with which you get called once you are at the lab. Now, with the new system, the lab receptionist theoretically doesn’t need a printout of your list of tests (hematocrit, creatinine, etc.), but in actuality the communication between website and receptionists, at least for me (but I know of other cases), means that some of the test pages simply get “lost“. In my case, one of my three pages didn’t get put into the system. Of course, I was totally unaware of this, since this was my first experience with having a machine make the appointment for me…So, after being checked in by a very nervous receptionist (more proof that this new system needs some serious revising), I went in to have my blood taken by a nurse. I noticed that she took only five vials of blood and told her that wasn’t enough, but she said that I was wrong. Hmmm. Well, I wasn’t, of course, but it wasn’t her fault. It was the blasted system’s fault.
I love computers…they’re great tools, blablabla. But sometimes I think it is best to do things the “old” way, and talking to a human being for something as important as blood tests is vital.
So this means that I only have a bit more than half of my tests. No total protein, no C reactive protein, no calcium. C’mon! But my hemoglobin is 12.2 and my M-spike is slightly better than it was last year. Also, my light chains are better. So far, therefore, I’m pleased.
I’m going to have the rest of my tests done next week…this time, I’m going to check the list carefully before I go in to see the nurse. And I’m printing out everything…I’m not going to let a machine screw up again!!!
Okay, okay, so I’m a bit (!) late for holiday greetings…but, in my defense, Stefano and I have had lots to do…We spent the holidays with his family in southern Italy and only returned to Florence a few days ago to our kitties and heaps of laundry 😉 .
Before we left Florence, I came across a super interesting article about curcumin and myeloma, but of course I’ve “lost” it and will have to look for it again. And even though I hate posting from my iPad, so annoying and slow, I will do so ASAP. Or rather ASIFTA (as soon as I find the article… 😎 ).
Anyway, all is well here in Florence…and I will be blogging soon…In the meantime, take care, everyone!
Hi everyone! Well, I won’t bore you with too many details, but wow, what a busy period this has been for Stefano and me. And in the middle of it, just when I was thinking of going to have my blood tests done, I caught the awful flu that is going around. High fever and whatnot. The good news is that I am well again, although still a bit tired, which is normal.
The days are going by so fast…suddenly it’s almost Xmas! And that is why this morning I decided to write this quick post just to reassure everyone that I’m okay…just…BUSY, busy with, among other things, our house renovation project, and with no access to my PC (I’m writing this post from my iPad, which is a super drag). Anyway, I hope to be online again soon…from my PC…but that won’t probably happen until next month…
In the meantime, a big hug to everyone! Take care, ciaoooooo!
A couple of weeks ago I came down with a nasty case of viral gastroenteritis, more commonly known as the stomach flu. No idea how I got it…but…I got it. Well, at least Covid wasn’t involved in my case; my family doctor told me that a (small) percentage of his patients with my symptoms had turned up positive for Covid. That would have been a most unwelcome double whammy!
Petunia, October 2022
Anyway, I was quite sick for about a week, sleeping most of the time, eating nothing but bananas and toast, and watching heaps of TV series and documentaries…The cats were very helpful nurses, always by my side, or on top of me, making sure I was always warm…
Even now that I am better and almost back to my regular daily routine, I still feel very tired and weak and have to take frequent breaks. I am also concentrating on rebuilding my devastated gut microbiome, which will take some time, I think…
Speaking of microbiome, at the first sign of sickness, more or less in mid October, I stopped taking curcumin, for obvious reasons… Stopping curcumin scared me, of course, since the myeloma monster is always lurking about inside of me, but I think I’ll be okay…Positive thinking, as always. I took my first dose of curcumin today and, as soon as the doctor gives me the go-ahead, I’ll go in for my usual blood tests to make sure there haven’t been any big changes. Fingers crossed.
Anyway, that’s what has kept me “busy” in the past couple of weeks or so…And before that, I was spending my days cleaning and trying to keep the cats out of the way of the workers who are (still) working on renovating our house. It’ll be worth it in the end, but boy what a huge, dirty project…mamma mia.
That’s about it…I hope to feel strong enough to write some research-related posts soon. For now, I’m taking it easy. In fact, I need a nap right now, or a TV series… 🙂
My first mention definitely goes to Castle Sinclair Girnigoe, see photo on right, which actually consists of the ruins of two castles, one from the 15th century, the other from the 17th. It’s located on a rocky promontory and has small sea stacks all around it, as you can see (the ruins are in the back of the photo). Spectacular.
