Interesting link here from 2010
Hi Michele
I've never had the pity, I have had "Oh you are brave" to which I say "Theres no brave about it I am not brave I have no choice because as I understand it, if you don't take the medicine you will die pretty quickly."
Even so I think I would take the pity to help raise the awareness but that does depend a lot on what state I was in. I have looked and felt very ill and I've been in a wheelchair and a mobility scooter but equally I have been mobile and able as I am now.
So I do understnd that we are all affected differently and feel and have different symptoms etc.
So if anyonefeels they cannot do this I do understand that not everyone can or will feel as I do.
John
The thing about this is that if it is do able it will require huge funding and support and therefore even more reason for us all to do what we can to raise the profile of our disease to the same or better status and funding than Leukaemia in order that we can help to drive this and other treatments and even potential cures.
Our biggest enemy as I have already said earlier will be the vested interest of the pharmceutical giants.
But cures are sometimes found and put in place despite them anyway.
I know one of the things that has always disturbed me is that every time I tell someone that I have Myeloma, invariably there reply is "Oh skin cancer" at which point I go to great lenghts to explain to them what Myeloma is and that "it is the second most common blood cancer but no hardly any one has heard of it blah blah blah" and I admit it gets tiresome to the point of can't be bothered and I might just as well say cancer. But in my own little way I am doing my little bit to spread the word so I keep on doing it.
I would encourage all myeloma sufferers to do the same and stop saying cancer and start saying Myeloma because indvidually we have a small voice but together we can make our selves heard.
Just lately I am organising events back home which started as a little idea for a fundraiser and has grown into a huge series of separate events which is going to raise a huge amount for Myeloma UK.
If any one wants to see what we are up to you can check out the video that I uploaded to Youtube this morning. It is also on our facebook page and Google+.
http://www.youtube.com/watch?v=wsIC_Gi1nl4
It could do with an events team to have organised all this but all there is is me on my first cycle of Revlimid & Dex and feeling all the dex in a negative way but I have turned it into a positive by using its effects to drive me to do all this.
I believe we will achieve my initial goal of spreading the word through Lincolnshire via our local media and things are already happening nationwide and I am full of ideas but my plans for that are at an advanced stage.
Further just from my little platform in the small seaside resort of Mablethorpe, the MMRF (Multiple Myeloma Research Foundation in America has reached out and made a link with me.
I can assure you also that when you decide to do something like this that the backing and support you get from Myeloma UK themselves is nothing short of magnificent.
Best Wishes Everyone
John
Try this one sorry.
John
http://www.facebook.com/pages/The-Clock-Fish-Chip-Restaurant/169343793123093?ref=hl
Hi
I have done a little research on this and it could be a while away because as with everything these things take time, especially when it comes to the vested interests of the giant pharmaceutical companies,
A lot of what I have read leads me to see that we are talking about placenta's here which at present are routinely disposed of after birth.
So firstly this will need to change to every one being salvaged and harvested as quickly as possible, probably requiring the permission of both parents of the new born baby.
This will have to be licensed and agreed by health authorities and governments throughout the world and provided no one comes up with any sinister alternative use for these harvested cells and any ethical objections can be overcome then it should be do-able.
However it doesn't take a genius to work out that it would need far more than one placenta to provide enough for one transplant.
This doesn't involve dead babies or anything, what we are talking about is every placenta that is now disposed of being used to save lives and restore peoples health and I can't see any objection with that.
Of course it will take time because starting from scratch stem cell registers will need to be established in the same way as bone marrow registers are now, samples will have to be crossmatched and I think I have read that as well as blood types there are several other markers that are important to make each a perfect match.
The only question that I find myself asking then is, Why is there no graft versus host effect and my best guess is that maybe because the placenta's stem cells create a new bone marrow system that is new and unmatured, maybe it is not like an adults marrow system which will aggresively try to destroy the intruder whichever way the GVH effect works.
Hope this is helpful but maybe we can all do a little research on this to find out the answers to any questions that we may have and post the results here for others.
Maybe the most important question of all would be, How long before this becomes the standard first line attempt at a cure or will it always be a last resort.
I am no expert some of what I have typed here is aleady on the internet and some is just logic but I have to say that this is the most potentially exciting article that I have read (and I do get handed newspaper cuttings about once a month most of which I already knew about and some that turn out to be no more exciting that the last new novel treatment) in 12 years of being a Myeloma sufferer. Lets hope no one comes along a throws a bucket of cold water over it.
Best Wishes to All
John Banks
P.S Have a look at our Awareness and Fundraising efforts at
http://www.facebook.com/pages/The-Clock-Fish-Chip-Restaurant/169343…
Hi Dai
I have sent you a message on Facebook and need to speak to you asap to confirm your offer to play at our event.
Please check your Facebook message and gice me a call.
Regards John
I can now confirm that Alan More " The UKs No1 ELVIS Tribute Act http://www.elvis.uk.com/ will be with us all day and will be performing his full show in the Steakhouse Bar Mablethorpe next door to us in the evening. The Steakhouse have pledged 40% of their taking to MyelomaUK also.
John
Hi Tom
Yes we all have MM t shirts lined up for the day.
Hi Dai
That would be really great, we have such a lot planned and I want to make a programme of events once we have everything in order and you would be most welcome to come along and play. I used to play guitar myself in a duo but just for fun nowadays. Bit rusty really.
I will keep in touch
Regards John
http://www.facebook.com/pages/The-Clock-Fish-Chip-Restaurant/169343793123093?ref=hl
Look forward to seeing you Tom
John
Hi Tom
Thank You
Hey remember the song, "Theres a guy down the chip shop thinks hes Elvis"
Well I think I have managed to secure an Elvis to spend the day with us entertaining the customers and performing a show in the evening.
Two of my staff are doing Tandem Skydives, My son is organising a sponsored night golf event with Glo Gear and the others are all buzzing with ideas to do their own things.
I have been overwhelmed to tears by how much they all want to give (didn't realise they cared)
Thanks again Tom do you reckon you could make it over to Mabo on the day, I would love to see you.
Cheers John
I have also now set up a page at Just Giving where people can help sponsor our event and donate directly to Myeloma UK
http://www.justgiving.com/John-Banks0
Cheers John
I have to say that I have been disappointed with my performance on Revlimid & Dex, because by contrast when I had the now primitive chemo CVAMP by slow infusion through a Hickman Line 11 years ago and there were side effects, I did manage to function largely and work and life was relatively normal except for some mild sickness and fatigue from time to time.
Then about 4 years ago Velcade and Dex where the Dex gave me superhuman energy levels and helped me to work 12 hour days, move house and come home after work and lay laminate flooring and decorate the house through the night.
So as you can imagine, my attitude for this course of Revlimid and Dex was pretty much ?Bring it On?.
Imagine my disappointment then to find myself being kicked into touch and that the Revlimid is so powerful that the Dex is not able to temper the effects. One of the side effects has been that I had become quite hoarse and husky in my voice. Since the Dex does have the effect then of making me a chatterbox and quite excitable it has been not powerful enough to convert to physical energy and enable me to function and work as I would like to. I suppose what I have inadvertently done is to use the the Dex in a positive way to sit in my office all day and organise this event talking to people on the phone until my voice has now almost gone altogether.
One of my favourite sayings all my life has been ?Without the Optimist, the Pessimist wouldn?t know how happy he isn?t? a great view that has helped me to be quite successful through life and I believe has been instrumental in my survival for so long with this dreadful disease. I never spend my life looking over my shoulder waiting for the Myeloma to return and try to live each day the best I can and be happy whether at work or at play. Sometimes it is hard to put everything in the right boxes but mostly I have a positive outlook on life and I truly believe it helps in the battle with the rogue invaders inside me.
I have had to act quickly to rearrange staff and work so that we may get through the rest of the busy season and that I may take part if I am able and having a good day, but if I need to rest I can because it feels that if I don?t listen to my body messages and try to push myself then it pushes me back with a vengeance.
The good thing of course is that if Revlimid has this effect on me then hopefully it is doing its job and zapping the PPs also. Pretty powerful drug but I have to say a bit of a shock to me from my previous experiences.
Best Wishes to All
John
So all in all although I have had a pretty crappy few days on the Revlimid and Dex and haven?t been able to work as such I have been spending my time organising this and have made myself feel pretty good inside. I am really excited about it.
I will keep everyone informed of how things are going and how much we eventually raise and if any of you are in or around Lincolnshire on 14th Sept then please come along and make yourself known.
The Event will be held at my shop
The Clock Fish & Chip Restaurant, Seaholme Road, Mablethorpe, Lincs LN12 2AW Tel 01507 472882
We may be found on Trip Advisor and at the moment are number 2 Restaurant in Mablethorpe Area
If any of you have any ideas which I may have missed or anything to add then please fire away with your comments I would be grateful for your input.
Best Wishes to Everyone
John Banks
Also we are hoping to secure the services of an entertainer for the day of some sort we are trying to come up with ideas for this and it is still a recently borne idea, maybe some sort of themed character or something (if anyone on here has any ideas then feel free to throw them into the pot).
All my staff have kindly volunteered to give their services for free on the day so we will have loads of efficient hands on the job so that we can be sure to get everyone served efficiently however many customers turn up. I am confident that we will be able to raise a significant amount for Myeloma UK.
Also the latest development is that one of my staff Olivia who is only 16 is going to try and arrange a tandem skydive with the help of a fundraising package of support from Myeloma UK and to try and tie it in to our event at around the same time so as to maximise the publicity for the paper.
