Four years ago, my mother was diagnosed with multiple myeloma, which is a treatable, but as of today, still an incurable form of cancer with an average life expectancy of just four years. 

Shortly after being diagnosed my mother underwent intensive chemotherapy, which destroyed her immune system and left her vulnerable to all forms of infection. After being hospitalized for over a month, she returned home to continue a slow and painful recovery. Today, she is thankfully in remission and she, my brother, and I wish to celebrate this milestone by undertaking the Multiple Myeloma UK cycling challenge. We will be joining a group of 140 people who will cycle nearly 500 kilometres (over 300 miles) from London to Paris in September 2018. I have decided to join her on this venture to support her during the ride and to help raise money in the hope that new medical discoveries will be developed to prolong her life.

My mother’s relentless fight against this terrible illness has been nothing less than awe inspiring. Her dedication to train and determination to succeed in this endeavor and persevere beyond this illness has been humbling to witness. I look forward to cycling by her side and making her proud. 

More details about Myeloma and my mother’s own story are below. Information about the ride, and about where the funds raised will go, can be found on the Myeloma UK website:

https://ride.myeloma.org.uk/

 WHAT IS MULTIPLE MYELOMA

Multiple myeloma is a cancer of the plasma cells in the bone marrow. Normal plasma cells produce antibodies to help fight infection. In myeloma, plasma cells become abnormal, multiply uncontrollably and release only one type of antibody, leaving the body's immune system weakened and susceptible to infection. The myeloma cells also produce substances that cause bone destruction, leading to bone pain and fractures, and additionally cause kidney damage.

The cause of multiple myeloma is not known.  It is the second most common form of blood cancer, but represents only 2% of all cancers. There are approximately 5,500 people diagnosed with myeloma every year in the UK. In the United States, in 2014, there were 24,050 new cases and 11,090 deaths. 

Myeloma is treatable in the majority of cases but unfortunately it is currently incurable. If the patient is strong enough, he will undergo a 3-month preparatory treatmentfollowed by high-dose chemotherapy, and a stem cell transplant to replace those stem cells that have been wiped out. Stem cells produce red blood cells, white blood cells and platelets. Without them, the immune system can’t function. The side effects of stem cell transplant are often similar to, but often more severe than, those from the chemotherapy, such as hair loss, mouth sores, loss of appetite, nausea, vomiting and low blood counts.

Median survival is about three years, but some patients can have a life expectancy of 10 years. Myeloma patients seldom die from myeloma, they die from the complications from myeloma. The number one complication is pneumonia, and others include infections, kidney failure, anaemia, etc.  Improvements made to treatment over the last decade has meant that survival rates in myeloma are improving. There is still no cure for myeloma, but every drug that is added is improving quality of life and improving life expectancy.

 WHAT IS MYELOMA UK

Myeloma UK is the only organisation in the UK dealing exclusively with myeloma. It helps patients and their families cope with a diagnosis of myeloma especially by providing information so that people can understand the options for treatment, care and how to live well with myeloma.

The information Myeloma UK provides covers all aspects of myeloma, from Infosheets and frequently asked questions, to more in-depth Infoguides, Infopacks and videos of doctors, nurses and patients talking about myeloma. https://www.myeloma.org.uk/

There is a Myeloma UK helpline, with experienced nurses available to talk to newly diagnosed patients and their family members. Myeloma UK organises support groups, and numerous fund-raising events, such as this bike ride, to provide funds for more research.

 MY MOTHER’S STORY

One weekend in 2014 I inexplicably started feeling extremely tired, and had excessive nausea and back pain. When the hospital X-rayed me, I was sent immediately to the oncology department: I was close to kidney failure, and had to undergo a plasmapheresis, which is the removal, treatment, and return of blood plasma to the blood circulation, due to the high levels of plasma.

The doctor told me I had myeloma and that my bones were so damaged that I risked spinal compression if I ran, rather than walked, and forbade me from lifting more than 2 kilos in weight. I had broken 2 ribs, another sign of the number of lesions, or holes, in my bones. I spent three months undergoing preparatory chemotherapy before being admitted to hospital for high-dose chemotherapy and a stem-cell transplant. I spent nearly four weeks in a sterile room while my immune system recovered sufficiently for me to be allowed home. The side effects of the stem-cell transplant and high-dose chemotherapy are awful. The hair-loss didn’t bother me; but the mouth sores and nausea were difficult to bear.

After eighteen months, I was declared to have had a very good response to the treatment and was given the option to stop treatment whilst in remission. In the following 12 months I had 2 bouts of pneumonia and also shingles, together with a few other minor infections. However, for the last year I have felt almost as well as before my diagnosis.

Living in a small country like Luxembourg I do not personally know anyone else suffering from myeloma and so the help, support and advice that the Myeloma UK nurses provided was extremely useful for me. I receive their monthly newsletter and read about new drug development on their website.

I would like to support Myeloma UK more than by just making my annual donation. The more money that they raise to support new research, the more likely that new drugs will be developed that will prolong my life and that of other sufferers.

I have set myself the challenge of completing this long bike ride in September 2018.

I encourage you to look at the website :https://ride.myeloma.org.uk/the-ride/   for more details.

Last year 140 people took part in the event – including doctors, friends and family of patients, and some patients too. The videos taken on the four days of the ride are extremely moving and motivational. 

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