When my GP told me I had multiple myeloma my pain relief was increased to morphine. The pain I was suffering was myeloma bone pain; multiple lesions, rib fractures and compressed vertebrae.
I took liquid morphine starting at 5mls every 6 hours. It was soon apparent this was inadequate so I increased the dosage to 10mls and reduced the time interval to 4 hours to give me much better pain relief. For five days I recorded every dosage and time for my GP to determine the dosage of a morphine slow release capsule.
On Tuesday 5th June 2001 I changed from liquid morphine to a slow release morphine capsule. It was Kapanol 20, the 20 being 20 mg. Kapanol 20 was effective for 12 hours so I took one pill on awaking and another 12 hours later. Kapanol was complimented with panadol.
Liquid morphine was still available for any break through pain. Initially I took some liquid morphine at the same time as the morning Kapanol to help me get going pain free.
Liquid morphine had a sweet taste to me, a bit like apple cider, was rapid acting, pain relief was felt after 2 minutes and was effective for 4 hours.
Side effects for me were dry mouth and minor constipation. The dry mouth was overcome by drinking liquid during the day. At night I slept with a drink bottle close by to sip and moisten my mouth. My lips became dry as well so I used a lip balm, my introduction to regular use of “lippy”. Myra claimed the dry mouth along with sleeping on my back caused me to snore, I never heard it. Constipation was manageable with Kiwifruit (Kiwigold, it’s sweeter) but became worse when I was on VAD.
At the end of August 2001, 3 months after starting morphine, I no longer required liquid morphine so reduced the Kapanol 20 to Kapanol 10. That was at the end of my second VAD cycle. I was still taking panadol.
For two evenings after the reduction I experienced restless legs while trying to sleep a classic morphine withdrawal symptom.
On 15th November 2001 I stopped the Kapanol completely. Restless legs were again experienced for 2 evenings and my bowels were loose for 2 days.
Glossary.
Morphine: A drug extracted from opium used in medicine as an anaesthetic and sedative.
Tuesday, May 26, 2009
Sunday, May 24, 2009
Myeloma bone pain
My bone pain was typical myeloma bone pain, very painful and never ending.
X-rays showed extensive bone lesions all over, 3 rib fractures, one collapsed and one partially collapsed vertebrae. No wonder I was in pain.
I had great difficulty getting in and out of bed, could only sleep on my back and could barely function. Sneezing and coughing was to be avoided, too painful. Bone lesions in my hips and thighs had me hobbling along.
I knew where all the road pot holes and car park speed humps were, it was too painful to drive over them at speed.
Travelling to and from work was 12km by bus and I learnt when to brace myself to avoid pain. One evening we had a temporary driver who must have been Meatloaf’s brother as he drove like a bat out of hell. That was a painful journey.
The hospital arranged a bed support enabling me to get in and out of bed easier. My wife helped me get dressed and to shower.
My response to treatment of VAD and the bisphosphonate Aredia was excellent and as the bones healed the bone pain reduced. Later I had an autologous stem cell transplant eventually reaching the multiple myeloma plateau stage and no more bone pain.
The biggest relief was to be able to roll over in bed and sleep on my sides and to be able to twist my back when reversing my car to see where I was going. Best of all was to be able to cuddle Myra, squeeze her tight and be free of pain.
When you have myeloma bone pain it never goes away. You take the pain relief, that dulls it down but it’s always there. It can destroy the soul.
Myeloma bone pain hurts, it really, really hurts. It sucks.
X-rays showed extensive bone lesions all over, 3 rib fractures, one collapsed and one partially collapsed vertebrae. No wonder I was in pain.
I had great difficulty getting in and out of bed, could only sleep on my back and could barely function. Sneezing and coughing was to be avoided, too painful. Bone lesions in my hips and thighs had me hobbling along.
I knew where all the road pot holes and car park speed humps were, it was too painful to drive over them at speed.
Travelling to and from work was 12km by bus and I learnt when to brace myself to avoid pain. One evening we had a temporary driver who must have been Meatloaf’s brother as he drove like a bat out of hell. That was a painful journey.
The hospital arranged a bed support enabling me to get in and out of bed easier. My wife helped me get dressed and to shower.
My response to treatment of VAD and the bisphosphonate Aredia was excellent and as the bones healed the bone pain reduced. Later I had an autologous stem cell transplant eventually reaching the multiple myeloma plateau stage and no more bone pain.
The biggest relief was to be able to roll over in bed and sleep on my sides and to be able to twist my back when reversing my car to see where I was going. Best of all was to be able to cuddle Myra, squeeze her tight and be free of pain.
When you have myeloma bone pain it never goes away. You take the pain relief, that dulls it down but it’s always there. It can destroy the soul.
Myeloma bone pain hurts, it really, really hurts. It sucks.
Thursday, May 21, 2009
A positive attitude to survive myeloma
A positive attitude has always been one of my aspirations.
“Success is a by product of a good attitude”.
During my myeloma illness and treatment a goal has been not to give in to self pity, negative thoughts or words. Continue doing what I normally do, to remain optimistic, to maintain a positive attitude.
At the beginning that became a challenge for me. After all myeloma is a cancer that has no cure, a reality that I had to work through. Myeloma had savaged me, I was a sick man. I could not change what had happened but I could influence the future.
Being an optimistic person, taking a proactive stance came natural. Consider the alternate; pessimism = negative (I won’t get better, the myeloma is killing me). Never would I allow myself to be dragged down into the bowels of negativity.
When I developed my “way forward” plan a goal was to create an environment that supported my positive attitude.
My self belief that I would recover to good health again was strong and fundamental. To look forward to a positive outcome, to get back to normal again.
“I will get better”.
“My myeloma will go away”.
“I am a survivor”.
My support team was made to feel welcome; looking after me was going to be a positive experience for them. I embraced them with my positive attitude. My role was to express gratitude, do my home work to be knowledgeable of my illness and the role of others, ask questions, listen, and give feedback. Take ownership of my illness.
Throughout the treatment and recovery process I needed to spend time to prepare and condition myself to be normal again. Maintain my hobbies and interests. Take time out from my illness to refresh my mind. To rejuvenate my positive attitude.
At the beginning of this posting I used the saying “Success is a by product of a good attitude”. Celebrating success is important to me. I grasped every opportunity. Good test results, a reduction in IgG, being able to sleep on my side, being able to shower myself. I used the celebration of success to reward my positive attitude.
“Little achievements, small steps in the long journey”.
A positive attitude helped me never lose my desire for life, my optimism, my dreams, my ability to face a challenge, my belief that I would achieve myeloma plateau stage.
Positive attitude: Expressing certainty in the way a person thinks or behaves, another tool that can be used to survive myeloma.
“Success is a by product of a good attitude”.
During my myeloma illness and treatment a goal has been not to give in to self pity, negative thoughts or words. Continue doing what I normally do, to remain optimistic, to maintain a positive attitude.
At the beginning that became a challenge for me. After all myeloma is a cancer that has no cure, a reality that I had to work through. Myeloma had savaged me, I was a sick man. I could not change what had happened but I could influence the future.
Being an optimistic person, taking a proactive stance came natural. Consider the alternate; pessimism = negative (I won’t get better, the myeloma is killing me). Never would I allow myself to be dragged down into the bowels of negativity.
When I developed my “way forward” plan a goal was to create an environment that supported my positive attitude.
My self belief that I would recover to good health again was strong and fundamental. To look forward to a positive outcome, to get back to normal again.
“I will get better”.
“My myeloma will go away”.
“I am a survivor”.
My support team was made to feel welcome; looking after me was going to be a positive experience for them. I embraced them with my positive attitude. My role was to express gratitude, do my home work to be knowledgeable of my illness and the role of others, ask questions, listen, and give feedback. Take ownership of my illness.
Throughout the treatment and recovery process I needed to spend time to prepare and condition myself to be normal again. Maintain my hobbies and interests. Take time out from my illness to refresh my mind. To rejuvenate my positive attitude.
At the beginning of this posting I used the saying “Success is a by product of a good attitude”. Celebrating success is important to me. I grasped every opportunity. Good test results, a reduction in IgG, being able to sleep on my side, being able to shower myself. I used the celebration of success to reward my positive attitude.
“Little achievements, small steps in the long journey”.
A positive attitude helped me never lose my desire for life, my optimism, my dreams, my ability to face a challenge, my belief that I would achieve myeloma plateau stage.
Positive attitude: Expressing certainty in the way a person thinks or behaves, another tool that can be used to survive myeloma.
Tuesday, May 19, 2009
Positive affirmations
A tool used during my myeloma treatment and recovery has been positive affirmations. Something I have often used throughout my life. Success will come when you impress the subconscious with the conviction you are a success. This is done by making an affirmation which clicks.
“If I can say it, I can do it”.
This keeps me focused on a positive outcome. In an earlier posting; a way forward, I said, At home that evening I stood in front of the bathroom mirror looking straight into my eye and said “My name is Sid Hider. I have cancer, multiple myeloma. It is a cancer with no cure. I am going to fight it. I will be a survivor, I will be a survivor”.
That was a strong positive affirmation. Note the use of the first person…...I. To make the affirmation more powerful and personal I said it out loud in front of the mirror.
Negative words are avoided especially …don’t…not…can’t…won’t.
Shorter affirmations are easier to remember and repeat.
I wrote down a list of affirmations to read and use when needed.
Constantly repeating the affirmation verbally and in my mind gave me a positive focus on a healthy outcome.
Some sayings used during my treatment and recovery included:
“I am a survivor”.
“Never give up, never never ever ever give up.”
“I am stacking the odds in my favour”.
“I am healing”.
“I will get better”.
“My myeloma is being attacked”.
“My treatment is working”.
There are books and web sites that can help with positive affirmations.
Positive affirmations: Another tool to use for surviving cancer.
“If I can say it, I can do it”.
This keeps me focused on a positive outcome. In an earlier posting; a way forward, I said, At home that evening I stood in front of the bathroom mirror looking straight into my eye and said “My name is Sid Hider. I have cancer, multiple myeloma. It is a cancer with no cure. I am going to fight it. I will be a survivor, I will be a survivor”.
That was a strong positive affirmation. Note the use of the first person…...I. To make the affirmation more powerful and personal I said it out loud in front of the mirror.
Negative words are avoided especially …don’t…not…can’t…won’t.
Shorter affirmations are easier to remember and repeat.
I wrote down a list of affirmations to read and use when needed.
Constantly repeating the affirmation verbally and in my mind gave me a positive focus on a healthy outcome.
Some sayings used during my treatment and recovery included:
“I am a survivor”.
“Never give up, never never ever ever give up.”
“I am stacking the odds in my favour”.
“I am healing”.
“I will get better”.
“My myeloma is being attacked”.
“My treatment is working”.
There are books and web sites that can help with positive affirmations.
Positive affirmations: Another tool to use for surviving cancer.
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