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Post by BarryB on Oct 10, 2023 19:24:18 GMT 12
Still nothing much to report since the April/May updates. White blood cells are continuing to behave themselves so it's really just a case of meandering along. Nothing is better, but at least it's not gotten any worse since last reported in August. Blood tests are still fortnightly, as are the maintenance doses of the chemo treatment, on alternate weeks to each other. The only plus is that we don't have to do a RAT Test before entering Haematology every fortnight, so that speeds up each visit a little.
Have really struggled with mobility over the cold winter months, I think mainly because the metalwork in both legs really seems to trap in the cold. And ice-cold legs don't work that well. The thought of long hot summer days was something to look forward to, and September dawned to a few spring-like days and a bounce in my step. Then, despite the temperatures being warmer my mobility began to decline again. I had a meeting with my surgeon last Friday - I'm very lucky that if I have any issues I can just make an appointment with the guy that not only has been cutting me open to date, but will continue to do any further orthopaedic surgery in future, without having to spend weeks lost in "the system" - and after doing some X-Rays of my hips, femurs and knees it appears I need at least one, possibly two knee replacements. I decided to go away and think about it for a couple of weeks, I mean, it came as a bit of a shock, then I'll go back and go through everything with him a little bit better prepared. Going back onto crutches yet again wasn't really in my immediate plans, but it might just be the best option. All l know is that he can't do the replacement(s) like he'd normally do a knee replacement due to the amount of steelwork already in the legs. If only one knee gets replaced, it will be the right knee, the leg with the most steelwork already in it. He will have to perform the surgery "by computer", whatever that means. I told him he could save the full explanation until l definitely decide whether it's a goer, or not, by which time I'll have got my head around things and prepared myself for another spell in hospital followed by the usual physiotherapy. More later.
Barry B
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Post by sonic33 on Oct 10, 2023 20:45:42 GMT 12
Thanx for the update Barry. All the best. Some big ongoing decisions to be made.
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Post by BarryB on Oct 11, 2023 11:42:08 GMT 12
Thanx for the update Barry. All the best. Some big ongoing decisions to be made. Sure is Sonic. I mean, I'd like to be able to walk properly again, obviously, but from the little bit of info I've got to date it's a pretty big op, and full recovery times can vary between 6 and 12 months. They guesstimate about 4-6 weeks before one can walk, without aids, even for about 10 minutes, then slowly improving from there. So it's a big thing to battle back from, again, and at the end of it I've still got the terminal Myeloma diagnosis. And if it's like when my right femur fractured in three places last October, I had to take a 5 month break from Chemotherapy whilst i recovered from the orthopaedic surgery and subsequent infections. Halting the chemo obviously isn't ideal either, Barry B |
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Post by sonic33 on Oct 11, 2023 20:25:37 GMT 12
Thanx for the update Barry. All the best. Some big ongoing decisions to be made. Sure is Sonic. I mean, I'd like to be able to walk properly again, obviously, but from the little bit of info I've got to date it's a pretty big op, and full recovery times can vary between 6 and 12 months. They guesstimate about 4-6 weeks before one can walk, without aids, even for about 10 minutes, then slowly improving from there. So it's a big thing to battle back from, again, and at the end of it I've still got the terminal Myeloma diagnosis. And if it's like when my right femur fractured in three places last October, I had to take a 5 month break from Chemotherapy whilst i recovered from the orthopaedic surgery and subsequent infections. Halting the chemo obviously isn't ideal either, Barry B Hopefully the decision becomes a bit easier when you are ready to sit down with the specialist. 2 Not very ideal options to chose from! |
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Post by BarryB on Oct 11, 2023 21:20:30 GMT 12
Sure is Sonic. I mean, I'd like to be able to walk properly again, obviously, but from the little bit of info I've got to date it's a pretty big op, and full recovery times can vary between 6 and 12 months. They guesstimate about 4-6 weeks before one can walk, without aids, even for about 10 minutes, then slowly improving from there. So it's a big thing to battle back from, again, and at the end of it I've still got the terminal Myeloma diagnosis. And if it's like when my right femur fractured in three places last October, I had to take a 5 month break from Chemotherapy whilst i recovered from the orthopaedic surgery and subsequent infections. Halting the chemo obviously isn't ideal either, Barry B Hopefully the decision becomes a bit easier when you are ready to sit down with the specialist. 2 Not very ideal options to chose from! I reckon I'll take in a coin with me, listen to all the options, time estimates, advantages, potential dangers, side effects etc, then flip a coin 👍 Barry B |
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Post by custaxie50 on Oct 12, 2023 12:53:10 GMT 12
Life has many turns as one goes through life...
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Post by BarryB on Dec 22, 2023 15:34:53 GMT 12
Had the follow-up appointment with the orthopaedic surgeon this morning, and he's convinced me to have the surgery on my right knee (which is realistically completely stuffed and has been for some time, but is now under even more pressure with everything else going on). Because of all the metalwork in there the op will be done robotically and will apparently be quite painful. He doubts it'll really make me walk any better, but should reduce the overall pain. Less pain sounded like a good idea to me. However he says 80% chance of less pain and a 20% chance of more pain. So there is some risk involved, but hopefully all to gain and nothing to lose. He filed his side of the paperwork this morning, which will take about a month over the Xmas/New Year break, but I filled out 10 or 12 pages of info while I was there so when the okay comes through, he can schedule it straight in to his schedule. Hopefully it turns out to be a good decision. Will mean another 6 weeks on crutches, but I'm kinda used to them now.
There's still something wrong with the left knee area too, but the pictures taken to date show the actual joint is in very good condition, so he's scheduled an MRI to see what we can see. If nothing, he will refer me back to physio to try and get that side pain free too. It's better than it was this time last year, but it's still down a couple of cylinders haha.
Merry Xmas to all, a happy New Year, and I guess I'd better try and get to some speedway in January as l could be out of action again by February!!
Barry B
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Post by sonic33 on Dec 23, 2023 21:05:36 GMT 12
Wow, not great but you got to do what they suggest is best case scenario.
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Post by BarryB on Dec 23, 2023 23:24:34 GMT 12
Wow, not great but you got to do what they suggest is best case scenario. He sorta thought that considering my overall diagnosis, my knee would probably just about last the distance. However, if I was going to insist on continuing to attend concerts, speedway and Warriors games, irregardless of his advice, he thought he'd better patch me up for my own safety  But it'll mean another 6-week spell on the sidelines, minimum, and the difficult part is not yet knowing exactly when that will be, although it'll be early in the new year by all accounts. He asked "how many concerts do you intend going to?" I replied "Well I've got tickets for four at the moment, but I guess I average about 1 per month during the course of the year, more over the summer months than winter though". At least he understands I can't just sit around and take pills all day every day, even though some days that's about all I have the energy for. Hopefully it turns out well, there's always risks with this stuff, and hopefully I'm still around next summer to make some use of it  Barry B |
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Post by BarryB on Jan 4, 2024 13:53:05 GMT 12
Booked for MRI on my left knee next Tuesday, January 9th. The results of that will determine when they schedule in the robotic surgery on my right knee, and whether they're working on both at once or one at a time. All I really know so far is that the problem with one isn't the same as the problem with the other one.
Had an eyes test and an eye health check yesterday. Thought something had seemed not quite right with my left eye over the past week or two. They found a cataract that'll also require surgery. At least my right eye is okay 👍
Barry B
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Post by Roxcyford on Jan 4, 2024 19:31:35 GMT 12
Was at a concert last night @ Bowl of Brooklands Barry, and thought about a post you put up recently, knowing some people in life would love to be there, My mother for one, loved Dire Straits and if it wasn,t for breast cancer she would have been there for sure, I hated the three monthly blood test, miracles do happen and may you experience many more concerts and speedway events. New year blessings to you.
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Post by BarryB on Jan 4, 2024 20:12:39 GMT 12
Was at a concert last night @ Bowl of Brooklands Barry, and thought about a post you put up recently, knowing some people in life would love to be there, My mother for one, loved Dire Straits and if it wasn,t for breast cancer she would have been there for sure, I hated the three monthly blood test, miracles do happen and may you experience many more concerts and speedway events. New year blessings to you. Thanks Roxy. Anybody that has 3-monthly blood tests are lucky. Mine are weekly  I was supposed to be at that same concert in Tauranga just before New Years, but in the end wasn't well enough to travel. Barry B |
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Post by Roxcyford on Jan 5, 2024 6:25:19 GMT 12
Was at a concert last night @ Bowl of Brooklands Barry, and thought about a post you put up recently, knowing some people in life would love to be there, My mother for one, loved Dire Straits and if it wasn,t for breast cancer she would have been there for sure, I hated the three monthly blood test, miracles do happen and may you experience many more concerts and speedway events. New year blessings to you. Thanks Roxy. Anybody that has 3-monthly blood tests are lucky. Mine are weekly I was supposed to be at that same concert in Tauranga just before New Years, but in the end wasn't well enough to travel. Barry B Bummer. . |
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Post by BarryB on Mar 1, 2024 13:35:11 GMT 12
What a difference a day makes. No posts in recent weeks/months as everything was kind of stable from one week to the next.
But unfortunately yesterday, at a scheduled 3-4 monthly cancer clinic (their timing seems to vary a bit), I was informed that my bloods, after about 15 months of stability, have taken a turn for the worst with one of the crucial readings. Not too badly, but enough that my next clinic will now be in 4 weeks time. Two more blood tests will be taken between now and then. Apparently the readings will not go up and down like waves, they will either level out or continue up. Continuing at the current level will be okay apparently, and the fortnightly "maintenance dose" should be adequate. But if it goes up further they will either restart the original treatment again, or consider an alternative treatment. Yay 😩
And then to top it off, I went directly from the hospital to a concert over the harbour bridge and had a fall which has done some damage to my left knee, with pain right up the femur to the hip. I don't know if I've just twisted my knee, or bent and/or broken something on the rod and screws that are in that leg. I'm due to have surgery on the right knee in the not far to distant future, and I go and injur the other side 🙄
I'd be down the hospital having X-Rays today if it wasn't for the NZ Stockcar Teams at WP this weekend, which was the ONE meeting I didn't want to miss this summer. Lots of great meds every 4 hours all night have got me comfortable sitting on the couch at least (even sitting was uncomfortable at the gig last night, and things were that bad by the end the on-site medics had to wheelchair me out of the venue and load me into my car), but actually moving around in an upright position is still extremely painful. I've pulled the pin on WP tonight, but am still hopeful for tomorrow night. It'll either be WP or MH, Middlemore Hospital, and hopefully they don't have to pull the pin out of my leg!!!
So if it doesn't come right by itself, they'll have to fix my left knee before they can operate on my right knee, but then it could come down to what is more important, surgery or chemo, because with some surgeries they have to stop the chemo until one has recovered from the operation. But if the Paraprotein levels keep climbing I guess the need for chemo overrides surgical wants/needs. And yesterday morning was such a lovely morning. What a difference a day makes 🤣
Barry B
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Post by nakifans on Mar 1, 2024 14:25:44 GMT 12
There's more twist's and turn's in your health journey than in a James Bond movie.
Let's hope the latest episode is only a slight blip and the worst is only missing one nights of the teams, especially as weather finally playing ball.
All the best from the speedway family.
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Post by Macgor on Mar 1, 2024 14:48:41 GMT 12
Certainly not the best news, gotta keep plugging on though. Hope you make it to the track although the stream may be the safest option albeit the most frustrating.
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Post by BarryB on Mar 1, 2024 15:10:53 GMT 12
There's more twist's and turn's in your health journey than in a James Bond movie. Let's hope the latest episode is only a slight blip and the worst is only missing one nights of the teams, especially as weather finally playing ball. All the best from the speedway family. Cheers nakifans. I had my first op requiring a general anesthetic at 5 years old, so it's been a tough road Mind you, my baby brother only got really sick once in his life, at 52 years old, and died. So I'm winning by comparison. I'm certainly a bit bummed about the teams though. That was THE meeting to try and make between ops and other medical stuff. And it all fell into place until I stuffed it all up by myself  If I could see in the dark like my cat I'd have been okay Barry B |
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Post by BarryB on Mar 1, 2024 15:15:37 GMT 12
Certainly not the best news, gotta keep plugging on though. Hope you make it to the track although the stream may be the safest option albeit the most frustrating. Nah, after going to WP for the Super Saloons a few weeks back, that feeling of the ground shaking when a bunch of Stockies hit the wall you just don't get on the stream. And that's even if the camera is pointing the right way and the director doesn't change camera just as it's all about to unfold. My great blood pressure is about the only thing I have going fort me. 120/70 give or take a point every time. Except when I'm watching a stream Barry B |
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Post by midway on Mar 2, 2024 23:21:56 GMT 12
I know we have crossed swords ,but when it comes to this ,one does feel and has experienced the pain you go through
Take it easy on yourself and make sure you get the right equipment from the occupational therapist on your case ,it will help you immensely and ask for a modern hospital bed with a air foam mattress ,home help can be great also especially for showering ..
Keep your chin up and think positive it maybe a long journey ...
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Post by sonic33 on Mar 3, 2024 10:53:50 GMT 12
lots of ups and down Barry. I spose that is somewhat expected with where you are at.
Although you had the fall, hopefully you can carry on getting to some of the events you love. A bit of a shame concerts and speedway happen at night when it is dark!
All the best. Thanx for the update.
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If I could see in the dark like my cat I'd have been okay 