As friendships and knowledge builds with other Myeloma sufferers, it is easy to understand that this Cancer unfolds so differently for each patient. With a huge variation in symptoms, it appears such a diverse disease that seems to stumble on the weakest organs making it’s own unique way of attack. For some MM sufferers the damage unfolds with lower back trouble or in long limb fractures or breaks. I know that a neck fracture was the first sign for a friend that something terrible was wrong and then much later a diagnosis of MM was made. How differently this disease shows it’s signs in each patient.
For Hamada it was kidney failure that came out of the blue with no signal at all that anything was amiss, just an unusual feeling of tiredness. For sure it is so important to get an early diagnosis before the myeloma does serious damage to vital organs but how many of us get regular blood CBC’s? very few I would imagine in the UK. Unless like Hamada who did contract work at times and needed good health checks for insurance travelling abroad etc. In many cases this disease could and does go unnoticed for many months, so the damage is already done. Although Hamada succumbed to MM he was in one way, very lucky to have had an early diagnosis as we believe that having had a blood test only six months before the very one that picked-up his kidney failure, certainly played a great part in getting him to this now, three years six months point. Early diagnosis I believe, is paramount and vital, we all know that the damage done by Myeloma cannot be reversed but it can be brought under control. Still with good care it is important to stress, many patients are now living long and productive lives.
Hamada was immediately prescribed a vast array of maintenance drugs from day one. Including some to protect as much as possible, his bones and the lining of his stomach and gut etc. It is so important to keep regularly to the times of taking these drugs and injections, not missing out or delaying in the filling of prescription etc. Good continuous management of drug awareness, taking as much care with infections, avoiding places and people with colds or worse still flu.
Diet is vital to the success of a longer life. Good tasty meals that contain a good variety, covering all vitamins and minerals and for some little and often is the rule. In the case of Kidney damage, eliminating salt and potassium and increasing liquid intake to a reasonable two litre per day amount, has helped Hamada greatly. I know that there are many MM sufferers who still enjoy a glass of wine, and why not? But if the kidneys are affected not really a wise move, the rule always being, water is best. Hamada now has 15% kidney function when at diagnosis he had only 6%. A great improvement that has kept him from dialysis.
The very difficult part is that Hamada’s Para Protein-an important marker and indicator in the activity of the cancer- is rising once again, and the decision will have to be made shortly, with regards to the next chemotherapy regime for him, possibly Velcade. Whether he is really strong enough to try again with more chemotherapy and if this is the right drug of choice at a time, when he is enjoying a quiet but steady pace of life, is a most difficult decision to arrive at. The damage from this drug would certainly be detrimental to parts of his poor quality blood, which although not getting much worse, is not improving either but could bring down the para-protein and such, help to eliminate further damage to his bones and organs.
We think the New Year 2010 will bring the answers to these decisions, Hamada has achieved so much and done so well we feel, for someone given a prognosis of only six months at outset . He continues bravely and without complaint about anything, a great lesson to us all I feel. So steadfastly we make the most of each and every day with love and the best possible care we can manage. We sincerely wish all our friends in the world of Myeloma (sadly there are many) peace and hope, a decent quality of life and the very best care possible from your providers but most of all, love and kindness from your carers .
Beautifully said. May your life together continue as long as possible with the same or better quality. Thanks for your online friendship.
Dear Susie & Hamada, I’ve heard your story before, but how very important it is to keep telling your story of hope and success as there is always someone new entering our MM circle. And we all know that it’s even more important to keep MM in the media for funding and awareness purposes. It’s crucial to keep that positive attitude and spirit of life at the forefront and you and Hamada both do it very well as caregiver and patient. My love and respect to both of you always, Lora
Happy to see some “big guns” celebrities are getting involved to bring much needed attention to your “quest for life”. Hoping they will help in getting the necessary funds so imperative to help everyone living with this disease live a comfortalbe life.
Thank you Teresa for your kind comments and for appreciating this post. I thank you also for everything I have learnt over the last few years from your site, most knowledgable and helpful information always. Hugs.
@ Lora. Thanks for your support Lora, I think of you often and know that you too will stay strong and positive as we support each other on this journey. You have much courage and a simply beautiful heart my friend.X
@ Yes Minna we continue in our own way, to promote awareness and draw attention to a much under funded illness. Thank you for your consistent kindness, words and thoughts, they help immensly when days are long.
Susie, I have just read your site for the first time, being directed to it through your post on listserv. Thank you for your very refreshing honesty and kindness that comes through in your words.
Thank you Marguerite for your nice comments – I will look out for your very pretty name on Acor.
http://www.susiehemingway.com‘s done it once again. Great post.