[batterboy58Participant]

Of course we also wish to give as big a cheque as possible to Myeloma at the end of it, so what began life as a spark of an idea a couple of days ago has now really taken off and is at an advanced planning stage with the help of Myeloma UK, our local press who have a team working on it already buzzing with ideas to make the day a success.
We will be also doing a free raffle on the day to encourage more business and I have been overwhelmed with gifts for prizes from local businesses including a Mountain Bike, A TV DVD Combi, Shopping Vouchers, Free Meal Vouchers from local Restaurants, Garden Centre Prizes, and many more that I intend to approach in the next few days. We will also try to encourage people to make a donation into the collection boxes for the raffle but believe that the best way is to leave that to people?s generosity and keep the raffle essentially free.

[batterboy58Participant]

One of the things that always strikes me about Myeloma is how few people have even heard about it and yet it is I believe the second most common blood cancer, often confused by people I find with comments like Oh skin cancer to which I have to always go into long drawn out explanations of what Myeloma actually is. So part of my aim is to promote awareness. I wonder if sometimes that us sufferers are too private about it and keep it to ourselves and maybe we should all spark off about it a bit more. I for one am fed up of suffering in silence. So my 54th Birthday will be Sept 15th hence coordinating this event with it when I will use our local press to flood the whole of Lincolnshire with as much information about not just our event but also Myeloma and what it is etc. etc. I will give the newspaper an interview about me and my journey and treatment over the past 12 years and the whole county will know about it.

[batterboy58Participant]

So what tools do I have at my disposal to carry out my plan, well although I have my business up for sale I still have it at the moment and it seems like a good vehicle to use to carry out my plan which is to hold a Myeloma Awareness and Fundraising day at my Fish & Chip Restaurant in Mablethorpe in Lincolnshire.
What I am planning is for Friday 14th Sept when Mablethorpe should be packed with visitors for a Bathing Beauties Festival being held over the whole weekend. We will be selling all food and drink at ½ price. The cost of producing the goods to be borne by the business in order that the whole days takings from 11am until 10pm will be donated to Myeloma UK. Myeloma UK are supporting my event with educational posters about Myeloma which I will put in my windows as soon as they arrive along with banners and balloons and t shirts that they will provide along with this I will start advertising the event now.

[batterboy58Participant]

Hi All

Just coming to the end of my first week of treatment, the first 4 days were okay, day 5 had pamidronate on drip at hospital and that night was running a high temperature all night and almost called the hospital. Next day the temperature was down but the first day off the dex hit me for six and I felt very fatigued and was unable to function at all. Today I feel a little better but still feeling pretty weird and very tired.
Didn't think I'd ever find myself looking forward to dex days.
Must admit I am pretty disappointed to be feeling so bad as we run our own busy seaside Fish & Chip Restaurant and I could be doing without being ill at the moment (very inconvenient)
I was wondering how everyone else is tolerating these powerful drugs and if anyone has found that the doses need reducing so as not to cause too much disturbance to quality of life. (I just need to be able to work 12 hours a day)Just sort of half joking.
For the record I take 25mg Revlimid 3 weeks on 1 week off.
40mg Dex 4 days on 4 days off and again one week off at the end of the month
Omepraxole 20mg same days as Dex
Clexane 40mgs every day
Pamidronate on IV monthly.

Cheers All
John

[batterboy58Participant]

Hi Pennie & Andy

Your journey quite closely mirrors my own, diagnosed 12 years ago, CVAMP and SCT, 7 years remission then Velcade and 2nd SCT and 3 years remission.
I also will be starting Revlimid & Dex next week and the future seems very uncertain and scary. However I am only 53 and my wife is 42.
We are also endeavoring to change our lifestyle by trying to sell our business in order that we may make best use of the remaining years.
We will follow your progress with interest and share our own over the coming months.

Best Wishes
John & Rita

[batterboy58Participant]

Hi
I had this pretty bad after Velcade and I believe it is one of the side effects. It does get better but I still feel it from time to time but not so extreme.
I believe I was prescribed Amitriptyline for this condition perhaps you could ask your Doctor for something to help.

John

[batterboy58Participant]

Hi Lorraine

I am sure your prof knows what he is doing so don't let things get to you too much, I know that no matter how upbeat one is it is sometimes hard to put everything in the right boxes and it is good to offload, I hope you feel better now.
I myself have been living with this disease for 10 years now and have had 2 SCTs, the last one being only 18 months ago, however my paraproteins are just beginning to creep up again and if they go up much more I will soon be looking at Revlimid as a next treatment option.
I have had Thalidomide before and tolerated it well, as I did also with Velcade so I am hoping to do the same on Revlimid. People say sometimes that we are so brave living with this condition but the way I see it is we don't have much choice and worrying will change nothing so I just take things as they come and hope to survive until the next miracle drug comes along or maybe even a cure one day.
In the meantime enjoy every day and make the most of life is my motto.

Best wishes John

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