Best of luck Collin, and Chris in Ward 9, They are a great bunch in there, the Ward Sister has been on the cancer ward I think for some 21 years, unless I got it wrong which would not surprise me.
If you get problems with your throat, I did, no matter how many mouth rinses I took, I can suggest: Complan mixed into a milk shake, Ice cream and cold milk then add jelly and a tangerine or something similar, these are optional.
Also the first 12 weeks when you come out are very important. For the first 8 weeks I saw nobody except my wife. We were meticulous about hygiene, I had my own supply of butter, jams etc… (We used the hotel portions). Everything was wiped down with Dettol Surface Cleanser and food preparations areas were cleaned every day with it. I assure you cannot be too careful during this period.
Best of luck.
Kindest regards – vasbyte
David
Hi Kerry, Welcome (?) to the site nobody really want s to be, but, we are glad we have the site and the friends and support it develops.
The real big problem with Myeloma is that in every human being it is different same basic characteristics but just about everybody reacts differently. So giving advice or encouragement can become a bit of a hit and miss affair! It never fails to amazes me how many people who where super fit are suddenly struck down. I consider myself a fit person, I used to take Physical training in the army and have always been health conscious so to speak. I always say, ? I do not mind being short and I do not mind being bald but I am bu–ered if am going to be short fat and bald!?. So I can fully see where you are coming from, regrettably, Myeloma has no boundaries, Short or tall, fat or thin it does not matter. Secondly they as yet are unaware of why people get Myeloma.
I got out of bed on the 11 Jul 2009 and my neck broke, like Melvin I was a fit busy person full of the joys of spring. Luckily, I recognised the sound of the breaking bones and quickly grabbed hold of my head and held it rigid until the arrival of the ambulance. Myeloma was diagnosed and checking my Medical records they were able to ascertain I had had it for 2 years prior to the break. Looking back at my records with hindsight and a knowledge of the symptoms you can see it but looking the other way they were just isolated incidents. I had an operation on the neck, if you look at the x-rays it looks like scaffolding around a church steeple, you cannot see a thing outside and I have full movement.
Back in 2009 My wife and I, just like you and Melvin, did not know what had hit us, nobody had even heard of Myeloma. We are now three years down the road and I am in good health. I have just been out in the garden digging up the summer flowers and planting Daffodils for the spring. There may not be any light at the end of your tunnel at the moment but I am sure you will see it in the near future.
All the very best to you and Melvin
Kind regards ? vasbyte
David
p.s. Oh by the way I am 69 – 70 in Jan!
It really is a strange old decease and that is for sure. But glad you are feeling on the up.
Kindest regards ? vasbyte
David
We all understand what you are going through so do not worry about "getting it off your chest" so to speak, all of us here are here because we want to help each other.
kindest regards – Vasbyte
David.
Hi Vicky, We are in a similar position in that Mo and I have been married 50 years, or will be in November this year. I am suffering with Myeloma and my original prognosis was 2-3 years in 2009. I did not expect to reach my 50th and have been planning for my demise for the last couple of years.
One of the biggest problems for my Mo will be loneliness. I know my two children and the grandchildren will try their best but the brutal truth is that they will, at some point, have to get on with their own lives. I have seen it happen to other families who are just as close as us and we are a very, very close family. People get busy and the days turn into weeks etc?.
To this end I have been encouraging Mo to use the internet, she is now on facebook, emails friends does the banking and knows how to open our Gas/ Elec account and mobile phone/internets accounts, with much cursing and ?dam stupid things? thrown in! I am buying her the latest Kindle when it is released on 28th Oct ? she likes reading and her hands are getting arthritic. She is 68 and has a little job at an Insurance Brokers and I have encouraged her to continue working ? it is only ten hours a week and she gets out and meets people. I have also encouraged her to go out with her Sister and Friends at least two days a week which she now looks forward to and enjoys .
Of course I am worried about leaving her but I am a lot more confident she can cope with door sales men and nuisance phone calls ? she used to be very polite but now just puts the phone down on them etc?
There are contact sites for bereaved and there have been one or two recommend by posters on here when they lost their husbands so hopefully they will see your post and put them up again for you.
This is just some of my ideas you will no doubt have your own. But my recommendation would be to encourage her to be independent.
I have tried to face the practicalities here for you and you might be already way down this path but I hope it is of some help. I wish you and your family all the very best.
Kindest regards ? Vasbyte
David
p.s. Make sure if they use the internet she knows all the Passwords, check questions, usernames etc?.
Yeah, yeah, yeah so you been ill, now tell me again why you have not been posting 😉
Great to see you back Dia we all missed your posts. Keep fighting buddy.
Kindest regards – vasbyte
David
Dear Rachel, please accept my most sincere condolences. In the short time I have known Paul he came across as a real nice guy. I will miss his posts.
Kindest Regards ? vasbyte
David
Actually Helen we are going to do something completely different. Our anniversary for the last 49 years has always been about Mo and Me. The norm would be to book an expensive exotic holiday, usually in the Indian Ocean or South China Sea area and off we would disappear, returning suitably bronzed.
This year we decided after much thought that in view of the circumstances we wanted to do something with the Grandchildren, no, I cannot afford to take then all the Maldives ? even if I could get insurance to go. So we asked the Grandchildren, ?If you could do anything in the world what would you like to do? (bear in mind ages are 9 to 18). Answer: go ten pin bowling and have a Pizza Express afterwards. So that is what we are doing, we have booked 4 lanes on the local Bowling Alley and reserved tables at the Pizza Express and the whole family is going bowling!
In addition for my Son/Partner and Daughter /Husband we have booked a Log Cabin in the very romantic little hamlet of Porthtowan, Cornwall (near Truro) for the anniversary weekend, 24th November, log fires and Hot tub, champagne etc?. for the six of us. Believe it or not we are actually hoping for just a [u]little bit [/u]of snow! (we always seek the sun ? now that is different)
And lastly we have six real good friends who have seen us through the problems of life as we have helped them and we have booked a first class restaurant for an evening out.
Mo and I are looking forward to it all.
Kindest regards ? Vasbyte
David
Hi Helen, Lovely to hear off your trip I do hope the infection clears up for you. One of the comments in my Consultants follow up letter from my recent appointment said ?no infections yet? as if she was expecting some! It is the start of the flu season, my injection is 3rd November, which is not a good time for us all so I am keeping my fingers crossed for everybody.
I am at present scanning 69 years of photographs onto my computer. We have about ten very large boxes, I am talking 3?x2?x18? deep, and recently I started on 1973. Amongst them were photos of a trip we did to Venice at that time, we drove down from Dusseldorf in Germany. We had to laugh when we found a picture of my late son Robert aged 7 peeing over the side of the Gondola (he had a problem with his water works then).
Kindest regards ? vasbyte
David
Hi Peter, I lost all my bodily hair accept my eyebrows :-S . Have no idea why not the eyebrows. Both times 🙁
Originally I, like most men over 65, had a swollen prostate and I was being monitored in 2008/9. Then Myeloma reared its ugly head and as my prognosis at the time was 2-3 years max, sale by date being July 2012, we kind of forgot about the prostate problem. However, as I was clearly not going to pop my clogs July this year I thought I had better have a PSA test and low and behold a PSA of 50. Gleason score 9, advanced prostate cancer. I had an MRI and Nuclear hip Scan and both came out clear so it has not spread to the bones. I have been informed that I am being recommended for 35 doses of radiotherapy. My Hospital appointment is next Monday when I will know more.
Kind regards ? vasbyte
David
Hair Hair I could not agree more – sorry could not resist it.
I am on my second lot of hair now. My hair has been very thin all my life so I was quite surprised when people noticed when I lost my first lot. I now have my hair back again although I notice it has not come back under my armpits this time nor has the five hairs I had on my manly chest returned, which made me weep a bit (I use to grow them long and I combed them across my chest just below my gold medalion). But, on my head it did come back thicker and darker the second time.
I am now going through treatment for Advanced Prostate Cancer and I am told that I will lose my hair yet again. Mind you I am not really worried about that it is the large breasts that I might grow with the hormone treatment that worries me. (the wife told me the other day that she has stopped throwing out her old bras for me ? not much sympathy there then!).
Kindest regards ? vasbyte
David
Well done Andy, Just keep bl—y well going Myeloma does not like that at all:-D
kindest regards – VASBYTE
David
Hi Kerry, a belated welcome to the site.
Tom is right your best chance for info on this is our Myeloma Nurse. I have been on the site since 2009 and cannot remember anybody actually suffering from Osteonecrosis.
Did your Mother have smouldering myeloma for some years that went to full blown Myeloma or has she actually had Myeloma for 14 years? If the later is the case I think your mother is ahead of us all. I vaguely remember a guy from Exeter, Devon who was 16 years and the site did have one or maybe two people who had had Myeloma for over 13 years.
I am sure we would all be interested in what you find out so please post the results.
Kind regards ? vasbyte
David
Hi Mike, I always hesitate about using the word welcome because none of us want to be here really, but you know what I mean I am sure, so welcome to the Club;-)
You will find bags of information on this site have a good look around and the really good thing is it is up to date. Most of the stats and info you will read on the net are at best inaccurate at worst rubbish.
I was diagnosed in July 2009 like Tom, he is the good looking one. I broke my neck getting out of bed, yes true. I have the bog standard Myeloma G and have been through the Operations, radiotherapy, chemotherapy, Stem Cell harvest and Stem cell transplant (SCT). At present I am not on any medication for Myeloma, I am not in remission but I am ?stable? my Paraprotiens were hovering around 2.4 to 2.8 after my SCT (they were 33 when they ate my neck) but my last 3 monthly check revealed they had risen slightly to 3.5, nothing yet to worry about and I am not now due another check up until 21 Dec 12. Oh, yes I am 69
Kind regards ? vasbyte
David
I loved your Waffle as you put it, like Tom and the others it brought a tear to my eye. I feel, through you, I have shared Stephen?s journey, one we will all have to make at some point, and I thank you for that.
My faith allows me to believe of an existence after death and in my world Stephen is looking down at you now and I am sure he is thinking what a wonderful person he married. May your God go with you.
Now is the time to Vasbyte, lift your head and face the world with a tear in your eye maybe but let there be a smile on your face, I am certain that is what Stephen would have wanted.
Love
David