hi Tom, I havent been on here for a while so u might not remember me:-D just an update on John my other half. He had his SCT and came out of hosp in March feeling really rough and weak after it of course. After a pretty short while, he picked up, and he started back in work – he's self employed – everything seemed ok at all his checkups in both hosps that he went to. He was asked at his checkup on 1st June if he wanted to go on Revlimid 25mg so he did. A week ago, he started having flu like symptoms and be was really ill with it and couldn't work. Last night the right hand side of his face under the jawline swelled up, really swollen. We rung the hosp and they told him to come down, he was there all day, and has had to go back in tonight to go on an antibiotic drip and have a scan on his saliva glands tomorrow – they don't seem to know what the cause of the swelling is.Haematology have said his neurophils were fine and bloods ok, they have referred him now to oral and facial surgeon, and he's said that he might have to operate on John's face, Tom have u heard of anythin like this before – I blame Revlimid he was fine before it, but the hosp are saying its an unrelated condition.:-( if u or any friends have any advice, I'd be really grateful xxx love to u all Helen
Hi Jean,
Nice to hear from you, thank u for the info, and it's great that u are doing some research on cardamon – I wonder what the consultant will say?! 🙂 Very often the USA and Germany are far in advance of us, so it is a good thing to keep on top of what they are doing over there. I can remeber reading about tomatoes containing lypocene and that may be good for men to eat them, especially when cooked, if they have prostate cancer (John was diag with that & had treatment back in 1997) – he asked his consultant about the tomato thing at the tme & got the response "Oh they haven't proved that yet" I've read lots of things now about lypocene since then. If the cardamon works, it would be great, wouldn't it?
Take care Jean and best wishes xx
Hi Ian, glad to hear the sedation worked well for u with your BMBs – I remember having something of that sort when I was a teenager and had to have a lot of work done at the dentists! Cor, I thought I was flying!! It's good to know that it is available to you if you need it.
Also very good news about your test results, that is wonderful and long may it continue, I say:-)
All the very best Ian, and I will keep all my fingers crossed fgor you xx
Hello Tom and thanks for yr message.
John has had lots of BMBs previously, like u he'd grit his teeth while he was having it done:-( but he was then able to drive home from the hosp, and was straight back into work (he's self employed, he's got a garage business for diesel/commercial vehicle repairs, and he's a total workaholic) 🙂 but this last one was done by a different doc, and cor, did she make a mess of him!
Yes, John has been told he will lose his hair – he's got lots of it at the moment and hasn't lost it with the trial drugs he was on in the summer; thinking about it now, if he's going to lose all his hair, why does he need to get a razor??!! :-/
Nice to hear from u Tom u r always so cheery!
Take care of yrself, I'm off to get a bar of choc and some icecream (comfort food!) lol xx
Hi Carole, thanks for yr reply:-) what u say is extremely interesting – your husb Roger sounds exactly like John's more or less.. John is 14 yrs older than me, so he's 69 this yr, so he worked in the "heavy haulage" industry of Robert Wynns of Newport since a young lad, and goodness knows what they came into contact with half the time – John was a mechanic there for yrs and yrs, and he still talks about them now. He lived on the farm for around 30 yrs (sheep dip much in evidence of course) .. it's strange isn't it.?
I know of quite a few gentlemen who were able to have the removal of the prostate gland, when John was diag with the condition he was unable to have the op, the bad cells were around the gland, so the consultants said, and if he'd had the prostate removed the bad cells woud still be there, so they told him to have radiotherapy instead. He was told that he was young to have the condition – he was around 50 at the time – like Roger he had always worked shifts,in Wynns he worked nights…it makes me wonder..:-S
All the best to both u and Roger, and how is Roger now? Has he had his SCT yet? xxx
Hi all, just reading yr earlier posts about cardamom – has anyone tried this yet, or is it something to steer clear of? I have just read the myeloma beacon info on Jean's link (I'd never heard of the beacon info site and wondered what it was):-)
Thanks for the info xxx
Hi Mavis, thanks v much for yr reply and good wishes for John, it is something that I am very grateful for, to be able to confide all that is going on here to lovely ladies and gentlemen who understand. 🙂 You have been through the mill too, Mavis, with the medical problems that u have had..I think it's good if u have family around to help you cope a bit! we are lacking a bit here..John has only got me to help him, and I've just got my older brother, who's as good as gold to me, he's going out tomorrow to get John an eletric razor, the hosp says he has to have one to go in {he normally uses a really old fashioned thing with the deadliest blades u could imagine – I had a bash at shaving my legs in the bath with it once – never again, I cut myself to ribbons!!:-D they were nice & smooth tho, if u ignored all the blood, the bathroom was like a scene from "the chainsaw massacre" :-S xxx
Hi Ian, thks for yr message, John didn't have any maintenance drugs for his prostate cancer, once he had gone thru all the radiotherapy at the Velindre hosp, that was it, the hosp just had him going back for checkups for yrs, & he was doing ok – in fact he was doing v well, until this MM popped up. There is a sort of connection between both you & him as regards the chemicals – John has come in contact with some pretty deadly ones, both through his job yrs ago in heavy haulage, and he used to live on a farm, as well! (altho we didn't know how dangerous these things were at the time) He is still in bed at the mo – the doctor really messed him up this time – grr – hes v tired & I'm taking his meals & his tablets upstairs for him (he's diabetic as well) I can remember at one of his 1st bone marrow biopsies the Haematologist told him he had strong bones; so maybe the doctor on Friday wasn't up to it, she just kept trying & trying using more drills & getting nowhere, & saying to him "you'd better come back on Monday" eventually a nurse got a male doctor in & he did the test. As far as I know they don't offer sedation at RGH, Newport, they just inject into the area to numb it first, and she had given him the maxium dose as it was – the male doctor wanted to give him more! (he didn't in the end) ..it's just not good enough in my eyes.. for his to be stuck in bed is not like John at all, he's always on the go..how r u now after yr SCT's I hope u r now good, Ian xxx
Hi Tom, Thanks very much for yr reply – I haven't been online till now, so I've only just found it. I am very grateful indeed for yr best wishes – u are all so very kind..we've had a bit of a setback with John, he was given a provisional date for his SCT of Feb 5th, but was told that if someone dropped out due to an infection, it could be earlier – he has to go into Cardiff for that, but his haematology hospital consultant is based in RGH, Newport. He had an appointment in Newport on Friday, they said they wanted to see him before he went in, and as he'd had the lung function test, and heart valve test there, we thought it was just for the results, so he drove down there on his own. At his appointment, he was told that the UHW hosp, in Cardiff wanted to bring his appt for the SCT forward to this Tuesday, so he had an xray, ECG, and another bone marrow biopsy (you know what they are like}, his normal counsultant couldn't do the bone marrow test, she had a full surgery, so another doctor did it – or tried to do it – she made a complete mess of it basically, and left him in a bad state, in the end a nurse got another doctor to do it, and to cut a long story a bit shorter, he came home with a zimmer frame, and pain killers! he went to bed on Friday eve before 9pm & he is still there now, which is not like John at all he is always up in the mornings by 7.30 am, ready to start work, but the only thing he can do at the mo is go from the bedroom to the bathroom with a walking stick! She really botched that test up. She had put two dressings on him down the hosp, I changed it yesterday & it was soaked with blood, so it looks like he won't be going into Cardiff on Tues….As u know, you get lots of these bone marrow biopsy tests, and John is the "lets just get on with it type" he hasn't had any problems afterwards normally, but this time was totally different..I just don't know any more xx
Hello Ozzy, thanks for replying back. Yes, I think u may be right regarding the chemicals factor and myeloma – not sure, of course – but John has had to use sheep dip yrs ago with the animals; and he also had to work with powerful chemicals in his job in the haulage industry as a mechanic. Of course, yrs ago, there was never any thought about the dangers for the workers was there, Ozzy? Things are so different now, and thank goodness for that. Maybe, these chemicals that John worked with combined with the radiotherapy, could be some reason why he's ended up with this disease .. I don't know, it just seems all so sad to me.:-( How r u now, Ozzy, and what does yr consultant say about the poss link with yr work? xx
Thank you Jenny, for yr information, which was gratefully received here. Nice to know that we are not on our own here in Wales, thanks to lovely people like you..I'll have a look at the details of yr support group, as u have very kindly suggested – you will have to excuse my lack of knowledge regarding this website, as I am a newbie here, u see. 😀
Hello Jenny, just received yr reply to my message, and thanks for the invitation to the support group, where in Cardiff is it held? As u can see from my reply to Bridget, we are quite a way from Cardiff itself, but John has to go to UHW hosp, as it's the only place with the machine for SCT treatment. Do u know if any of yr members have been to the same hospital, and if so, how did they get on? Love to hear from you again xx
Hi Bridget, thanks for replying, and it was nice to hear from you! Yes, John has been through the mill, you are right. I can appreciate that there may not be a link between the prostate cancer/radiotherapy treatment and myeloma, but it just seems so strange & uncanny, for it to happen to him. Neither disease is in his family either, as far as we know. John is 14 yrs older than me, so I never met his dad, but he didn't have either disease. John's work keeps him going, tho, which is really good, he's been working today – we've got a garage – so it's hard, physical work, engines, etc. In fact, I think he's more worried about being away from the business, and leaving it in my hands, than having his treatment!! lol.. how are u now Bridget, I hope u r now keeping well, and do u possibly know if there are any ladies/gents here who r from my area? I'm sort of trying to find someone who's been into the UHW in Cardiff for treatment to see how they got on (we live around 20 miles or more from the hosp) thks once again for replying, Bridget, & hopefully I will hear from some other people, too xxx
