April/May 2010 have been 2 tough months for me in my myeloma journey.
Myeloma returned back to me last year with a relapse. Treatment failed to put me into a plateau stage, my hopes lay in new treatment available in a clinical trial.
Qualifying for the trial became the easy part, getting through 2 setbacks to commence the trial was more of a challenge. My trial started with one day to spare.
May bought with it the passing on of 4 myeloma friends, 2 bloggers and 2 local myeloma friends. There may have been more bloggers while I was in hospital.
One myeloma friend in particular left me grieving deeply. A 6 year myeloma friendship is difficult to end.
All is not lost, it is now 9 years since my initial diagnose with prognosis at that time of 3 to 5 years. My positive attitude, pro-active stance, interest in gaining myeloma knowledge and being willing to fight for myself remain. I will never give up. The love and support from my wife Myra has been huge, could not have got to where I am with out it.
With myeloma being a series of treatment and plateau I have always tried to get back to “normal” after treatment as soon as possible, living a normal life with myeloma pushed into the background.
There are now new generation treatments not previously available to me, combinations of old and new treatments and stem cell transplants giving us longer plateau periods along with trials for more new treatments underway now.
New treatments not available to me in 2001 include Thalidomide (Thalomid), Bortezomib (Valcade) and Lenalidomide (Revlimid).
Unfortunately Bortezomib and Lenalidomide are still not available in New Zealand through our public health funding service Pharmac.
Support for frontline treatment, relapsed disease, clinical trials and supportive care is far more advanced now.
The future looks promising, the search for a cure continues.
Since beginning blogging 18 months ago I have found a new source of help and inspiration, an international family of myeloma support on the internet. To all you folks who read blogs, comment or email to myself and other bloggers a very big thank you.
Links:
Revlite clinical trial
Coping with death of a myeloma friend
Treatment example
Pharmac
Showing posts with label Survivor. Show all posts
Showing posts with label Survivor. Show all posts
Tuesday, June 1, 2010
Wednesday, March 3, 2010
Survivorship – 1: Proactive stance
Survivorship presentation on myeloma survivorship, my first four months.
Part 1 of 6. Proactive stance
1. Survivorship Pro-active stance.
Before I could move forward and fight my disease I had to address issues that would hold back my progress. There was to be nothing holding me back.
Ownership: I had to take ownership of my illness, it was my disease no one else’s. It was then I created my saying “my body, my illness, my treatment.”
Denial: When my doctor told me I had cancer, multiple myeloma, I did not want to believe him. I told him he was wrong, it was some one else’s results. Denial was short, I faced the truth quickly.
Emotion: Tears flowed; at times I could barely talk. I learnt not to let the emotions build up too high; it was that “C” word. I learnt how to release the emotion early, I learnt how to cry.
Anger: I was angry, why me, I have too much to live for, too much to loose, too much work to do. Talking it through with others helped. Like emotions I learnt to deal with anger as it happened, don’t let it build up.
No abuse: There was potential for abuse from me: mental, physical, emotional. My life philosophy of no abuse was reaffirmed. No abuse, not negotiable.
Confront death: Myeloma is a cancer with no cure, a consequence of myeloma is death. I was young, only 53, thought I was bullet proof, never considered death, had no time for it, death was for other people. I had to confront death, bring it out into the open to move forward.
Be a pro-active patient: I wanted to know everything about myeloma, treatment, the hospital system. Being a passive patient was not for me, I wanted to be pro-active.
Links to previous relevant postings:
You have cancer.
Decision made to be a myeloma survivor.
Confronting death from myeloma.
Part 1 of 6. Proactive stance
1. Survivorship Pro-active stance.
Before I could move forward and fight my disease I had to address issues that would hold back my progress. There was to be nothing holding me back.
Ownership: I had to take ownership of my illness, it was my disease no one else’s. It was then I created my saying “my body, my illness, my treatment.”
Denial: When my doctor told me I had cancer, multiple myeloma, I did not want to believe him. I told him he was wrong, it was some one else’s results. Denial was short, I faced the truth quickly.
Emotion: Tears flowed; at times I could barely talk. I learnt not to let the emotions build up too high; it was that “C” word. I learnt how to release the emotion early, I learnt how to cry.
Anger: I was angry, why me, I have too much to live for, too much to loose, too much work to do. Talking it through with others helped. Like emotions I learnt to deal with anger as it happened, don’t let it build up.
No abuse: There was potential for abuse from me: mental, physical, emotional. My life philosophy of no abuse was reaffirmed. No abuse, not negotiable.
Confront death: Myeloma is a cancer with no cure, a consequence of myeloma is death. I was young, only 53, thought I was bullet proof, never considered death, had no time for it, death was for other people. I had to confront death, bring it out into the open to move forward.
Be a pro-active patient: I wanted to know everything about myeloma, treatment, the hospital system. Being a passive patient was not for me, I wanted to be pro-active.
Links to previous relevant postings:
You have cancer.
Decision made to be a myeloma survivor.
Confronting death from myeloma.
Sunday, February 28, 2010
Survivorship – The first 4 months
Late last year (2009) I gave a presentation to my myeloma group on myeloma survivorship, my first four months.
My presentation commenced with my condition at diagnose and I discussed if I wanted to be a survivor.
Some of my strengths are: Positive attitude, can see the big picture, don’t get bogged down with trivia, good planning and organisational skills, a willingness to learn, a self belief that I can do anything. How I used those strengths as part of my survivorship skills was explained in the six survivorship skills I identified.
Pro-active stance: Take ownership of my illness. Before I could move forward and fight my disease I had to address issues that would hold me back.
Myeloma support group: A support system with other myeloma patients.
Team Sid: A network of practical help and support.
Create a myeloma and medical knowledge base: To take ownership of my illness I had to learn about my illness.
Maintain a positive attitude: Continue what I always do, be positive.
Create positive affirmations: Compliments a positive attitude.
My next six postings will expand upon those six survivorship skills.
Two survivorship definitions:
Stages of survivorship: Debbie Moore LBF NZ.
Acute –Begins with diagnosis and spans the time of further diagnostic and treatment effects.
Livestrong - Lance Armstrong Foundation.
Survivorship begins at diagnosis, the moment your battle with cancer begins, and continues through your treatment and beyond.
Wednesday, December 9, 2009
Sid's story in LBF magazine
About this time last year I was interviewed by a journalist doing research for an article to be placed in the Leukaemia and Blood Foundation of New Zealand (LBF) magazine winter edition. LBF wanted a multiple myeloma patient who had myeloma long term and was willing to tell their story.
Encouraging others during their myeloma journey and sharing my experience has always been one of my aspirations. That was the motivation for me to agree to the interview.
I found it a step back 8 years into my myeloma past reviving many memories of my myeloma journey. Myra was present during the interview prompting me when my memory failed and sharing in the story.
Going through that whole process was another reason that motivated me to commence my blog.
A link to the magazine article (edited and 1.3mb) is here. LBF magazine.
A link to the full version (recommended) is here. Sid's story.
Encouraging others during their myeloma journey and sharing my experience has always been one of my aspirations. That was the motivation for me to agree to the interview.
I found it a step back 8 years into my myeloma past reviving many memories of my myeloma journey. Myra was present during the interview prompting me when my memory failed and sharing in the story.
Going through that whole process was another reason that motivated me to commence my blog.
A link to the magazine article (edited and 1.3mb) is here. LBF magazine.
A link to the full version (recommended) is here. Sid's story.
Sunday, October 11, 2009
Been too busy!
My last posting was back on September 19th. All is well, just been too busy, some of which is explained in this posting.
Chemotherapy and dexamethasone has reduced my IgG down to 10. It was decided one more cycle then reassess. What happens next? I will listen to my consultant on 20th October then present my list of my options and questions, an important day for me. There is still no decision on Valcade being funded by our health system.
Myra and I attended a Lymphoma awareness day here in Auckland put on by the Leukaemia and Blood Foundation (LBF). Survivorship was the theme, something close to my heart.
That got me motivated to ask our myeloma group co-ordinator if I could prepare and present a PowerPoint presentation for our myeloma support group on my survival from diagnose in 2001 through to the end of my initial VAD treatment. She was happy for me to do that so I chose 6 survival skills that I used which I will elaborate on in other postings. A previous posting Decision made to be a myeloma survivor was my starting point.
There were a surprising number of questions from the group on my bone pain which will be another presentation next year. Two previous postings Myeloma bone pain and Morphine for myeloma bone pain are popular search engine hits on my blog. Some one with myeloma bone knowledge like orthopaedics will talk first followed by my experience.
Work hours have increased since a mid-year downturn. I am a structural draughtsperson on a casual employment contract that suits me for health reasons. No more long hours or weekends. Work keeps me normal, my brain active and brings the dollars in. That along with more time on my religious studies has cut into blog time.
My “transplant series” has about 6 more postings to complete. That will be followed by the first plateau/remission stage, more about fun and life there.
At the end of the month we are having 2 weeks holiday (USA = vacation) so no postings then.
It’s spring here in New Zealand, warmer weather so time for vegetable garden preparation and growing. In particular money maker and sweet 100 tomatoes, spring onion, lettuce, radish, silver beet and leeks.
Have fun, be happy.
Chemotherapy and dexamethasone has reduced my IgG down to 10. It was decided one more cycle then reassess. What happens next? I will listen to my consultant on 20th October then present my list of my options and questions, an important day for me. There is still no decision on Valcade being funded by our health system.
Myra and I attended a Lymphoma awareness day here in Auckland put on by the Leukaemia and Blood Foundation (LBF). Survivorship was the theme, something close to my heart.
That got me motivated to ask our myeloma group co-ordinator if I could prepare and present a PowerPoint presentation for our myeloma support group on my survival from diagnose in 2001 through to the end of my initial VAD treatment. She was happy for me to do that so I chose 6 survival skills that I used which I will elaborate on in other postings. A previous posting Decision made to be a myeloma survivor was my starting point.
There were a surprising number of questions from the group on my bone pain which will be another presentation next year. Two previous postings Myeloma bone pain and Morphine for myeloma bone pain are popular search engine hits on my blog. Some one with myeloma bone knowledge like orthopaedics will talk first followed by my experience.
Work hours have increased since a mid-year downturn. I am a structural draughtsperson on a casual employment contract that suits me for health reasons. No more long hours or weekends. Work keeps me normal, my brain active and brings the dollars in. That along with more time on my religious studies has cut into blog time.
My “transplant series” has about 6 more postings to complete. That will be followed by the first plateau/remission stage, more about fun and life there.
At the end of the month we are having 2 weeks holiday (USA = vacation) so no postings then.
It’s spring here in New Zealand, warmer weather so time for vegetable garden preparation and growing. In particular money maker and sweet 100 tomatoes, spring onion, lettuce, radish, silver beet and leeks.
Have fun, be happy.
Sunday, June 28, 2009
Myeloma beginner's help
The internet has a great source of information for newly diagnosed myeloma patients.
I recommend two articles found on the North Texas Myeloma support group web page. Unfortunately I cannot verify the date they were written or if they have been updated since publication, my emails were unanswered. Access the articles on the North Texas Myeloma support group web page by control/click the title.
Living successfully with multiple myeloma by Peter Tischler.
An informative article listing points that one must know and do to best ensure that one will survive myeloma with the quality of life one wants. I discovered Peter’s article in 2005, four years after my diagnose. Fortunately I had been doing most of what Peter suggests so just needed to fine tune my approach.
His main points are:
1. Take care of your kidneys.
2. Avoid infections.
3. Form a survivor team.
4. Don’t be a good patient.
5. Educate yourself. (this may be you, your partner or a family member)
6. Maintain your immune system.
7. Keep medical records.
8. Know your doctor’s limitations.
9. Early warning system – avoiding crises.
Myeloma 101 by Peter Tischler.
Myeloma 101 explains the basics of myeloma, diagnostic tests that are used and treatments for myeloma.
There are three levels of explanation: L1 simple explanation, L2 more detail, L3 more technical stuff.
Contents include:
Myeloma 101.
What is multiple myeloma?
The myeloma cell.
Myeloma protein.
The supporting cast.
How myeloma affects us.
Different types of myeloma.
Staging myeloma.
Testing – Blood tests.
Testing – Urine tests
Testing – Scans.
Testing – Other.
Treatment – Overview.
Treatment – Standard/frontline
Treatment – Maintenance.
Treatment – Transplants.
Tuesday, June 2, 2009
Myeloma, 8 year celebration
My initial myeloma diagnose was on June 1st 2001, 8 years ago.
On my blog home page is a counter that says:
Time since diagnose June 1st 2001, 2922 days, 8 years 0 months 0 days.
I feel very humble to have achieved an 8 year survival of myeloma especially as initial prognosis was 3 to 5 years. I have benefited from medical progress.
Good planning, good support, good attitude, good treatment, good family, good luck and good love have all contributed.
All my myeloma friends who are no longer with me are remembered today with love and respect. They taught me so much.
To my wife Myra, thank you, I love you.
Today I celebrate, tomorrow I continue living with myeloma.
On my blog home page is a counter that says:
Time since diagnose June 1st 2001, 2922 days, 8 years 0 months 0 days.
I feel very humble to have achieved an 8 year survival of myeloma especially as initial prognosis was 3 to 5 years. I have benefited from medical progress.
Good planning, good support, good attitude, good treatment, good family, good luck and good love have all contributed.
All my myeloma friends who are no longer with me are remembered today with love and respect. They taught me so much.
To my wife Myra, thank you, I love you.
Today I celebrate, tomorrow I continue living with myeloma.
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.
Friday, April 24, 2009
Myeloma support group
Being an active member of a myeloma support group has assisted me in becoming a myeloma survivor.
My first visit to my myeloma support group was a revelation to me. At first I thought I was the only person in my city with this rare disease. To enter a room to be with a group of others with the same disease became overwhelming.
My new myeloma friends were talking about symptoms, bone pain, conditions and health problems that I was experiencing. Heads were nodding with acknowledgement as I explained my symptoms. They all knew what I was talking about. I was accepted as one of them. I felt normal.
Leaving that first meeting I felt a calm satisfaction that I had found some good friends with the same disease and a support system. It suited my approach to my way forward and has been an important part of my survival.
My support group has given me companionship and knowledge. The guest speakers have been informative. Listening to others pass on their story has given me a better understanding that myeloma is not the same for everyone. We may have the same disease; it effects us in different ways.
That’s why I say “my illness, my body, my treatment”.
Our caregivers are not overlooked, where would we be without them. They are welcome to come along to participate and support each other.
A down side to my myeloma support group is we are all living with multiple myeloma, a disease that has no cure. It can be treated and progression slowed down. Eventually most of the group will die from its effects in some way or another. I can’t hide from that, its reality.
When the first of my multiple myeloma friends died I was devastated. How I coped and what I learnt will be in another posting.
I do acknowledge that support groups are not for everyone. We all have different personalities, a different approach to life and to survival. Freedom to make our own choice is a fundamental of a free society. My choice is yes, a support group is what I want.
My myeloma support group is run by the Leukaemia and Blood Foundation (NZ).
www.leukaemia.org.nz
Free phone 0800151015. (New Zealand)
More about them in a later posting.
My first visit to my myeloma support group was a revelation to me. At first I thought I was the only person in my city with this rare disease. To enter a room to be with a group of others with the same disease became overwhelming.
My new myeloma friends were talking about symptoms, bone pain, conditions and health problems that I was experiencing. Heads were nodding with acknowledgement as I explained my symptoms. They all knew what I was talking about. I was accepted as one of them. I felt normal.
Leaving that first meeting I felt a calm satisfaction that I had found some good friends with the same disease and a support system. It suited my approach to my way forward and has been an important part of my survival.
My support group has given me companionship and knowledge. The guest speakers have been informative. Listening to others pass on their story has given me a better understanding that myeloma is not the same for everyone. We may have the same disease; it effects us in different ways.
That’s why I say “my illness, my body, my treatment”.
Our caregivers are not overlooked, where would we be without them. They are welcome to come along to participate and support each other.
A down side to my myeloma support group is we are all living with multiple myeloma, a disease that has no cure. It can be treated and progression slowed down. Eventually most of the group will die from its effects in some way or another. I can’t hide from that, its reality.
When the first of my multiple myeloma friends died I was devastated. How I coped and what I learnt will be in another posting.
I do acknowledge that support groups are not for everyone. We all have different personalities, a different approach to life and to survival. Freedom to make our own choice is a fundamental of a free society. My choice is yes, a support group is what I want.
My myeloma support group is run by the Leukaemia and Blood Foundation (NZ).
www.leukaemia.org.nz
Free phone 0800151015. (New Zealand)
More about them in a later posting.
Saturday, April 18, 2009
Decision made to be a myeloma survivor
At the conclusion of my second appointment with my haematologist (June 2001) I made a decision that I wanted to be a myeloma survivor.
My test results from the previous week had arrived proving that I had multiple myeloma. My haematologist explained what multiple myeloma was, my current diagnose, what treatment was available and what treatment options I had. A stem cell transplant in the future was mentioned though not discussed in depth. Examples of myeloma survival were discussed as was the progress of future treatment, hope was on the horizon
There were more urgent matters to consider, initial treatment. That was to be VAD (Vincristine, Adriamycin and Dexamethasone.)
After that appointment I felt more confident that I could fight my cancer. I could now see a way forward.
At home that evening I stood in front of a mirror looking straight into my eyes 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”.
This I repeated daily for the next two weeks and at regular intervals there after.
By doing that I admitted I had cancer, took ownership and started planning for my survival. My attitude became positive again. I would not tolerate any negativity from myself or others that would compromise my survival.
Even though I was on an emotional roller coaster I knew a way forward, the plan to survive had started.
A daily diary had been started from day one. A record of how I felt physically and emotionally, medication, thoughts, medical information and all my contacts. That proved invaluable allowing me to look back and see my progress and to recall any event.
I have always had the ability to focus on an issue, to plan and execute an end result and good powers of concentration. All of those attributes were going to be called upon for me to survive.
Positive affirmations became important to me. They were repeated like a mantra.
- I will be a survivor.
- Never give up, never never ever ever give up.
- I will stack the odds in my favour.
- Multiple myeloma go away, get out of my body.
- I can’t change the past but I can influence the future.
- Focus, focus, focus.
- My illness, my body, my treatment.
The foundation was being built for my way forward.
Glossary.
Haematologist: A doctor who specialises in the diagnose and treatment of diseases of the blood, bone marrow and immune system.
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