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.

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.

Myeloma transplant - Exercise

How to approach exercise during my stem cell transplant for myeloma had me baffled. What exercises to do, when, how long, why, could I do it, will it have any good or bad effects.
My medical advisers said that being isolated and immobile during transplant would cause muscle wasting and may cause decreased circulation, DVT, pneumonia or respiratory complications.
My attitude was if I was to achieve a successful outcome I want to stack all the odds in my favour so if maintaining exercise during transplant was going to help my success then I would do it.

Pre transplant I had recovered from initial treatment, gaining strength and walking an hour a day.
Until my white counts dropped too low I continued walking at the hospital for 30 minutes at a time when I could, initially outside then the hospital corridors. My pace slowly reduced as my white counts lowered and fatigue started.
When my neutrophils were low and I was unable to go outside the ward I used an Exercycle in the ward and walked around the room.
The hospital physiotherapist gave me a range of exercises to do during transplant. Stretching, chest expansion, deep breathing, ankle strengthening, arm lifting and rotation, leg lifting all on the bed or standing up and generally tried to keep moving to maintain circulation and limit muscle wasting.
There were times when I could not exercise due to fatigue or tiredness.
Did it help? A little, if I did nothing my condition would have deteriorated. When leaving the BMTU I was fatigued, could walk slowly non stop for 15 minutes and had to rest.
I believe exercise kept me healthier during transplant and helped me recover more quickly.
This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Hey, it's me

Near the end of my VAD treatment I had an interesting experience in a shopping mall.
We had received my latest test results after the third cycle of VAD. Results were positive, IgG was dropping, and I was feeling healthier, less bone pain, so to celebrate we went to the shopping mall for a coffee. One thing I always try to do; celebrate success
As we were about to leave we met acquaintances of Myra, an older couple. A conversation took place as if I did not exist. I was ignored, the invisible man, being talked around. Sid was “he or him” cancer was “it”. They had a problem, probably a generation thing, unable to face a person with cancer. That C word again.
“Hey it’s me, I’m here, look at me” I said. Eye contact was still avoided.
Stuff them, that’s their hang up.
All I ask is stand by me, stand next to me and treat me as normal. My physical appearance may have changed during treatment, yes I do have cancer but I am living with cancer not dying from cancer. I am still me. I need your support.
It was with great restraint that I avoided giving them a single digit salute. (My mum taught me to respect older people).
What I did learn was involve myself in conversation more. From the beginning make eye contact, smile and ask if they want to listen.

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.

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.

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.

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.