MYELOMA PEOPLE - FIFE

 

 

 

C/o Haematology Unit, Ward 12, Victoria Hospital, Kirkcaldy, Fife

 

Three Myeloma people from Fife and their carers met for the first time on Monday 23rd.June 2003, at the Staff Club of the Victoria Hospital.   For Arthur, Jessie, John, Betty, and Jacques, it was a break through the wall of isolation that kept them apart until then.   They travelled from Leven, Glenrothes, and even Kinesswood, some seventeen miles away.

 

“I, too, have Myeloma….”was the starting point.  Thanks to the meeting, each of us realised that we were not alone in having Myeloma and in caring for someone with Myeloma.   Now we know other people who also face that Cancer.   We discovered there are some 20 Myeloma People attending the Haematology Unit at Ward 12 of the Victoria Hospital of Kirkcaldy.     

 

John was diagnosed four years ago and was prescribed Thalidomide early on, which disagreed with him. Today, apart from numbness about the body, he is quite satisfied with his present treatment. Socially, he prefers to keep his Myeloma to himself; even his friends don’t know he has Cancer.

Arthur was already retired on other health grounds when he was diagnosed last year.   His present concerns sound very familiar to most people with Myeloma treatment experience: multiple daily medications, including oromorph and pain killing patches, restrict the scope for “normal” living.  One day is OK, the next not so good, and so on.   Then, the big question remains: “How am I doing Doctor, what’s going to happen next?”

Jacques, also diagnosed in 1999, went through serious complications, and treatment for a transplant.  More chemotherapy followed until September 2002 when that was replaced by Thalidomide, which is keeping the paraprotein level in check. 

 

Ellen Watters from IMF (International Myeloma Foundation) attended that first meeting.  Ellen explained her role with IMF, which is to help setting up Myeloma support groups such as this one.  This week being the UK Myeloma Week (21-28 June), our meeting was a welcome initiative in the awareness campaign run by IMF.  Doctors, and GPs in particular, are targeted because so much depends upon early diagnosis, before extensive damage has been done.  More research is the key to further development, leading to new drugs, such as “Velcade” and “Actimid”, which offer good prospects of lasting treatment. Ellen offered IMF brochures and information leaflets about Myeloma, with contact names and numbers.

 

We thank Charge-Nurse Jillian, of the Haematology Unit, for making the initial arrangements for the meetings, and to Staff-Nurse Angela for letting us in, and making the booking for the next meeting:

 

                  Monday 18th. August 2003, at 15.00 hours.  

The Victoria Hospital Staff Club

 (Refreshments will be provided. That is a promise!)