Hi Eve … interesting question about being in the forces having a bearing on MM and/or amyloidosis.
John was in the Navy!
I remember 4 years ago reading on this forum about a gentleman who thought navy related fuels were something to do with his diagnosis of MM … a few others had put in their tuppence-worth and the common thread seemed to be fuel (think there were 3 of them from up and down the country). Don't know if there is any truth in the matter or not, but its something I remember from way back when I first joined the forums when John was first diagnosed (December 2006).
Sending healing thoughts and love
Angelina xx
Excellent news David, I'm glad your sensitivity is fading … big T-bone steak on the menu for you tonight then, followed by something nice and cold?!
My John has terrible teeth since being diagnosed with MM … actually don't know if its the MM or just his age (I'm saying that with a tentative screwed up face!). His teeth have been crumbling and falling out piece by piece – euch, that sounds horrid actually. But in truth, he's loosing quite a few bits of his teeth each year now … there are so many crowns in there now he could be classed as royalty!!
We use sensodyne toothpaste as matter of course in our house so I don't think sensitivity is an issue with him.
Sending healing thoughts and love
Angelina xx
Oh Dai, I've almost wet myself laughing at your expense! Bless you. What a picture you paint in words – I must try the hoop thing with John and see how that goes with his "whole body super-twitch" although I don't think my hands are quick enough to make the gap!! 😀
Jen, you are right about doctors over-prescribing drugs. John goes between the hospice, the GP, the hospital and the community nurse who all throw in their tuppence-worth which ofcourse results in him taking all sorts of cocktails that no-doubt work against each other. I'm hoping that once he's under the care of the new hospital and its team within that they'll sort him out once and for all.
Thanks everyone for your responses and funny little stories, I could add a few of my own but best not blether away. It good to know that John is "normal" then, or as normal as can be on so many drugs, so I'll stick this little worry into a box and be done with it.
Bless you all.
Sent with healing thoughts and love
Angelina xx *y-a-w-n*
Holy Moly Dai, your song is brrrrilliant!! I loved the lyrics when I read them mid-week and love the song now that I've heard it too. Clever you, again well done to you!!:-D
I for one will happily stand in line for my copy, I am very fond of country … went daft a few weeks ago when Gold Radio had a Dolly Parton concert ticket competition on … needless to say I never won though 🙁
I can't enthuse enough how much I like your song … sad with a happy twist.
Wishing you well Dai, if this little taster is anything to go by then I'm sure you'll do exceedingly well.
Sent with love
Angelina xx
Thanks Bridget, Eve and Min …. your reponses have put my mind at rest.
Oh Bridget, some mornings I'm completely exhausted … John on the other hand seems completely unaware that he's been jiggling about. I try to pretend that I'm on a bumpy train or car journey so I don't notice the matress shaking so much and its less of an issue. I also have a little wall of cushions between us to cut down on being thumped.
Eve, I had a little laugh about the legs in boots! Heavens, Johns had some weird dreams at times too … makes you wonder where on earth their imaginations come from?!
Min, you're inside my head – I've been thinking for the past couple of years that Johns amyloidosis has gone into his brain and thats whats causing all the bad dreams and twitches (even though the scanner hasn't picked up brain activity). From reading your own accounts it appears that the drugs are to blame along with lack of fluids which has always been a problem for John and his wonky kidneys. John has always been one for going that extra mile – by this I mean if there is a VERY RARE side effect to get then he'll get it! It makes us chuckle actually, even with the likes of the amyloidosis – he couldn't just make do with MM, he had to go and get the amyloidosis too 😛
John is starting at the newly built local hospital under a new Haematology team so we can start afresh and hope they will get to the bottom of all the wonky bits. I'm becoming increasingly worried about his excrutiating back pain now, he's had no chemo for a few weeks now after reacting badly to the Velcade; his back is lumpy and bumpy which I assume are tumors. I phoned the old hospital yesterday for help as he was in agony so they've suggested doubling up pain relief until he starts with the new team. Oh I so hope they decide quickly on when chemo will begin again.
Anyhow, thanks for the advice on our living nightmares its much appreciated.
Sending healing thoughts and love to all
Angelina xx
Evening Min
I held my breath whilst reading your post just now, I can feel how tense you are bless you. This disease has so many twists and turns, its impossible to predict whats coming next.
Firstly I'm really pleased Peters recovery plan is beginning tomorrow, the sooner the treatment starts the sooner you'll have him well again. It does look as though things are going to get worse before they can get better. I applaud Peter for not being ready to give up yet, now thats something especially when his "numbers" appear to be so grim. Fighting spirit and a positive head is most definitely required, and by the sounds of it he's determined to give it a good go and thats just wonderful!
As for you Min, oh bless you I feel bad for you carrying the strain on your shoulders. The supporting role is often the most difficult. Watching someone you love become so ill is heart-wrenching. All I can offer is my love, healing thoughts and tell you that I'm thinking of you both. Dex – urgh! Please try to let any nasty words wash over you, they won't be meant, it'll be the drugs talking … easier said than done though.
Wishing you better days ahead and sending healing thoughts and love
Angelina xx
Bless you both Min.
I'm so sorry to read of your desperation. From reading the others posts it appears there may still be options available to Peter. The saving grace is that he is feeling well at the moment and long may that continue. Don't give up, you've come through too much to throw the towel in now … keep fighting and remain positive. God willing the new drugs will do the trick.
I don't have any special words that could help or make you feel better. All I can do is what I do when I'm "stuck" and thats to ask for the help of the angels … therefore I am asking Archangel Michael to stay by your sides to give strength and courage, and Archangel Raphael to bring healing to Peter and to guide the doctors to a suitable drug combination that will put things right again. They don't usually let me down.
Thinking of you both, sending healing thoughts and love
Angelina xx
Ooooooh, so mysterious Dai! I love it! What an honour that you've shared your first pending "novel" with us, thank you.
Hope the publishers don't keep you hanging around too long before they get back to you …. did you put a spell on them?!
Sending lots of positive energy your way and crossing my eyes, fingers, toes and legs for a successful outcome too.
Sent with healing thoughts and love
Angelina xx
Hi Alastair, how are you?
Have you just been diagnosed with MM? If so, then you'll have loads of questions flying round your head.
You may have already read through the posts here on the forum, in which case you'll see varying stories both about illness, side effects, treatment and ofcourse we're all in different areas/hospitals too. Its difficult to pinpoint a specific treatment area or hospital, if there was somewhere with a huge success rate then we'd all be moving house to be close to it. The truth is that everyones body reacts differently to treatment paths so its more a "suck it and see" type of illness.
I'm sorry I can't be more specific. All I can say is that my husband achieved remission for 3 1/2 years after taking CTD, we live in Stirling, Scotland. I have read reports of people who have had CTD followed by a SCT who haven't had such a long remission – so its very much an individual illness – it reacts differently body to body. His MM has now returned and he was put on Velcade (again by the same hospital team), however the Velcade caused an adverse reaction so it has been stopped. Velcade in others has been very successful … so again, its not so much about the hospital teams/care given but more how your body deals with the illness and all the drugs thrown at it.
I have also read about various treatments, the trials for instance that we have had no access too however I think down South there are hospitals that promote trials. John also has Amyloidosis so we fly to London every six months to the Royal Free for scans as there is only one scanner of its type in the country. I don't think its a case of "postcode lottery" with Myeloma, I think it depends more on how your own body copes.
Apologies again if I'm not quite answering your query, its not quite so cut and dry as it first appears.
Sending healing thoughts and love
Angelina xx
Well said Jet!! I couldn't agree more.
I love your "spring clean" of friends. Its very true indeed that you find out who your "real" friends are when something bad happens in life. John lost many so-called friends along the way … but its no loss really, they were just "hangers-on" as my mum would say. The friends that have remained faithful have been very supportive.
Definitely not worth wasting time and energy over thoughtless family or friends. Get rid of anything or anyone negative, thats the spirit! Positivity all the way! It really does make you feel so much lighter and brighter afterwards. As for friends, well they make themselves known in many guises – how wonderful of your friend to come clean your house Jet, now that is a true friend indeed.
Laughter is definitely the right medicine, anyone casting a dark cloud over you should be cast aside.
Sending healing thoughts and love
Angelina xx
Hi Roberta
Awe bless you, I'm so sorry you are having such a rubbish time with your "outlaws". Please, please don't apologise for rambling .. good heavens thats what this site is all about, we support each other in whatever way we can … we don't always have the answers but a good set of eyes and ears and a bit of understanding too.
I can tell you that we are also experiencing similar with ours too. My John doesn't keep very well with his MM, infact I've just got him home after a few weeks in hospital during which time his brothers and sisters were literally popping in to see him for 2 or 3 minutes whilst on their way to visit their mum who was also in hospital. One of his brothers has never been in our house, the rest of his family have although its been a few years. I guess they are all caught up in their own little bubbles and time rumbles away.
Like you, it used to cut me in two that they showed no support or real caring. Now I find its better as I don't have to "answer" to them in a way. I send them all a global text message to let them know whats happening with John, they sometimes text back in acknowledgement, but they never instigate a text or come on the phone to ask how he is day to day.
John doesn't like to talk about it, when I do he gets angry and ofcourse a little argument begins – just like your situation. I know that John feels very let down by his family and embarassed about it too. My family are completely different – always there for us supporting physically, mentally and financially too. John is currently changing hospitals so he can be nearer our home rather than the homes of his family (they live next to his old hospital which has been a 40 minute drive for us to get to whereas the new hospital is just 10 minutes from our house)so now IF his family choose to visit they'll have to do the drive – his sister said "well don't expect us to come visit you", which ofcourse hurt John terribly.
I don't have the right answer for you, but I do share your frustrations. It used to eat me up, but now I let it wash over me. All that matters to me is looking after John and my 2 girls, my family help out in whatever way they can and I keep Johns family updated …. more for my peace of mind than theirs.
I'm sorry I can't help you Roberta, however I am thinking of you and wishing things would improve for everyones sakes.
Sent with healing thoughts and love
Angelina xx
Hi Bridget
Oh I'm so pleased you have had contact with MacMillan, they are absolutely wonderful earth angels! The nurses up our way have a wealth of knowledge on so many topics likes of benefits and grants, support and counselling, and ofcourse coping with pain, discomfort and daily goings-on.
Like yourself, John used to take severedol but a few years ago the powers that be changed things around for the better. They moved him onto Oxycodone (slow release pain relief) and Oxycontin (immediate release pain relief). He found both worked well, however the Oxycodone (slow release) was stopped after a year or so as it was making an impact on his wonky kidneys and was given fentanyl patches instead. He still takes Oxycontin (immediate release) when he first gets up in the morning and throughout the day for breakthrough pain relief (can be taken every 4 hours if needed), it works well for him. He also takes Abstral which is another immediate release painrelief that he puts under his tongue – this is used more for an instant relief as the Oxycontin takes a good 10-15 minutes to get to work.
He also has the Lidocaine patches which numb his back – these are adhesive sheets about the size of your hand that stick on to his painful area for 12 hours at a time. John usually finds they roll up after a while as they heat up with is body, most especially when he's in bed with them (he wears them in the daytime but spends alot of his time in bed currently). These are great for pain relief, he likes them very much.
Hope this helps you Bridget, Johns been on the above for a few years now at varying strengths to suit his pain levels.
Sending healing thoughts and love
Angelina xx
Ha Ha …. you were the first person I thought about Tom when we were offered the stairlift – "onwards and upwards" right enough, and every time it'll be used … unless for "onwards and downwards" 😀
Yeh, the toilet sounds wonderful – I'll never leave the house again!! I can see us all fighting over it already, will need to issue a rota system. 😀
Well I have indeed been bitten on the bum saying outloud earlier that Johns diahhorea had come to an end …. its gone and started up again, oops. Hope I didn't tempt fate?! He's lying in bed like a burst balloon once again, poor soul, its taking such a lot out of him (literally!!).
Tomorrow is another day, hopefully he'll be brighter again (and no doubt sending me out for more poor little lambs to chew on!).
Sent with healing thoughts and love
Angelina xx
Awe bless you Scott, thanks for replying.
What a rotten time you've had. I do hope your health continues to improve … sometimes the treatment can be worse than the illness itself.
Reading your story was like reading my Johns story. His kidney function is also poor, his back in a state although his 7 broken bones were cemented through vertebroplasty a few years back. As for the diahhorea, wow, there's just no end to the stuff! I suffered ulcerative colitis (bowel disease) a number of years ago so have a "diploma" of my own, my bowel was removed thankfully but now John has taken over in this department, bless him.
After a few days diahhorea free he's only just in the past couple of hours started up again, oh dear. The consultant has toyed with the idea of starting him on Revlimid (also known as lenalidomide I believe), however he's still too ill yet for any form of chemotherapy. The plan, for the moment, is once he's well enough, is to start him back on a lower dose of Velcade and see how that goes.
Fingers, eyes and most importantly legs crossed it will come to an end sometime soon.
Sending healing thoughts and love
Angelina xx
Oh good heavens! Wow Dai, I'm completely blown away … not just about the coincidence of my name in your song, but how wonderfully creative you are. I LOVE country music also, yay. My parents used to listen to it when I was just little so it always fills me with happy comforting thoughts.
Hand on heart, well done you!
I also found it quite strange that the number 1, 11 or 111 features alot … you first posted at 9.11pm, your lyrics post has had 111 views and I replied to you at 1.11pm. I just had to get out my Doreen Virtue "Angel Numbers" book to consult. Hope you don't think I'm weird, as I said before I'm into all things angelic.
Anyhow, 911 reads this: "your thoughts are manifesting into reality at an ever-quickening pace. Keep your thoughts about your Devine life purpose, focused only upon your desires, and give any worries or doubts to heaven for transmutation."
11 reads: "Pay attention to your repetitive thoughts and ideas, as they're answers to your prayers. This number also signifies a highly creative person who needs to avoid addictive behaviours."
111 reads: "An energetic gateway has opened for you, rapidly manifesting your thoughts into reality. Choose your thoughts wisely at this time, ensuring that they match your desires. Don't put any energy into thinking about fears at all, lest you manifest them."
I do hope you get a positive response from your agent with the book and that your creative juices continue to flow with your second book. As for the lyrics above, wow …. I'm totally loving them, its such a great story – Angelina sending you a new love with her blessing, ahhhhh, I'm a sucker for romance. What a lovely song Dai. Again, well done you.
Sending love and lots of positive energy your way
(the other) Angelina xx
