Loss of independence

When I was in hospital recently for my myeloma lytic lesion right Femur rodding and lytic lesion right femur fracture LINK I was bed ridden.
I could not use or put weight on my right leg. This left me dependent on help from other people, my independence had gone. My independence stopped at my finger tips.
It became evident what my essentials were: cell phone, radio, diary, pen, lip gel, hand wash, clean underwear and bathroom bag. All were kept in 1 drawer that I could reach or in a plastic container on top of that drawer.
Non essentials were in another drawer and cupboard out of reach to me.
I had to learn to ask for help and press the help buzzer. The nurses were good, as they said their job is to help the patients.
Physio gave me a range of exercises to do in bed several times a day mainly to get the leg working again. Towards the end of the bone fracture stay they encouraged me to get out of bed to use a walker. This was a struggle as I needed increased short term pain relief to cope with the leg bone pain. My pain relief is controlled release oxycontin tablets, 40mg morning, 30mg evening.
When I was discharged from hospital to home I was still in hospital help mode. The occupational health team inspected our home, gave me a wheel chair and a big walker, put in a ramp at the door step, increased the height of my bed and 3 seater with packers, gave me a bath board, shower chair and commode.
Myra had a serious talk to me about self help and that she could not do everything for me. She had taken 4 weeks leave from work to help me through the first cycle of the Rev-lite trial and during leg recovery. I was in a wheel chair, in pain from myeloma and the bone fracture; both gave me restricted movement. I was not helpless so we discussed what I could or could not do and set some new achievement goals.
It is now 3 weeks since discharge. The myeloma and bone pain has reduced; I can move my leg sideways where previously I could not. I am using the walker more walking 30 minutes 3 times a day along with the walker exercises. There is less restricted movement; I can get in and out of bed by myself, showering myself, drying the dishes at the sink and back in charge of the TV remote. There has been a big step forward.
I am regaining my independence.

Myeloma wish list

I have been thinking. What would be most helpful to make life better for myeloma patients? Here are some of my thoughts.

USB port:
It’s the era of computer development so why weren’t we born with a USB port some where on our body. Plug a lead from the port to the computer and through a computer programme we could diagnose, read all blood results and determine anything else that was wrong. If the programme was smart enough it could even do a bone marrow biopsy.
That would do away with finding veins.

Car park building ticket:
Ever tried to put your arm out the car window to get the ticket from the car park ticket machine while suffering myeloma bone pain? Sometimes I had to ask Myra to get out of the passenger seat and walk around to get the ticket out of the machine for me. I want an arm on that machine that extends into the car so I don’t have to reach out.

Speed humps:
Speed humps should be made from soft foam rubber that would help the bones!!!

Showering:
Showering with myeloma bone pain and restricted movement is difficult. I need a showering machine like a car wash. Turn it on, walk in and let the brushes and rollers do the work.

Plumbing inlet/outlet.
Needles in veins for blood tests and IV lines could be avoided it we were born with permanent inlet outlet taps connected directly to a vein.

Electronic bed:
That’s already available and I have used one, a great help. During my second ASCT I had an arm in a sling and was suffering myeloma back pain. The hospital gave me the electronic bed complete with remote control. Move it up, move it down, raise the head, raise or lower the legs.

Coping with death of a myeloma friend

Three months after my first stem cell transplant (2001) I experienced the first of my myeloma friends dying, death from myeloma.
Myeloma is a cancer which has no cure. At that time in New Zealand prognosis was 3 years, possibly up to 5 years with an ASCT, standard treatment was chemotherapy, thalidomide had not been approved. Death from myeloma was a reality.
Not long after diagnose I went through the process of confronting death. For me to move forward death could not be avoided; there was to be no denial.
Link: Confronting death from myeloma.
When I heard that “J” had died from the consequences of myeloma I was devastated, very distraught. “J” was a mentor to me, helping me from our first meeting at our myeloma support group with coping skills, myeloma, and transplant advice. In 1995 he had been ASCT patient No 4 in New Zealand, a myeloma and ASCT pioneer.
During the previous 3 months I had been very much focussed on me, my ASCT preparation, transplant and recovery. This left me with little time for anything else; I had forgotten that people die of myeloma.
The death of “J” jolted me back to reality.
Unable to cope adequately I approached the Cancer Society of NZ for counselling, a service I had used before not long after diagnose. My counsellor listened to me explain my problem, we discussed the situation then I was introduced to a range of coping skills. It was up to me to decide what would suit me.
From that counselling I have devised a routine that I use when a myeloma friend dies.
Myeloma can be such a selective and personal disease affecting us all differently.
One of my original sayings is repeated: “My illness, my body, my medication.” My myeloma friend has died, not me. My battle continues.
I sit alone and reminisce about my myeloma friend, their illness, the good times, the bad times, what they meant to me and the times we shared. At the conclusion of that I say the first of my farewells.
Next I ask Myra to sit with me, she usually knows the person. We talk together then say goodbye to our friend ending with a prayer.
The final step is to fill in a bereavement card and include a small note to the family. Only when I feel I have fully dealt with the death do I seal and post the card. That is the final farewell.

My myeloma friends mean a lot to me, they are my lifeline. In a corner of my heart I place a red rose for each one who has passed on. Rest in peace my myeloma friends.

John 5:24 “I tell you the truth, whoever hears my word and believes him who sent me has eternal life and will not be condemned; he has crossed over from death to life.”

Helpful hints for myeloma survival.

Here are some helpful hints for myeloma survival that I have learnt or been given by myeloma friends.

Take ownership. It’s your illness no one else’s.

Denial, get over it.

Anger; be angry, deal with it, move on.

Create a knowledge base for myeloma.

Don’t listen to Aunty Mary stories, yours is unique.

If some one cannot say the word cancer out loud they are not on your side, tell them to go away.

Join a myeloma support group for friendship and knowledge.

Help is a phone call away, write down your important contact numbers.

When the day is dark, light a candle.

Some days are surrounded by monsters, there is no way in, there is no way out.

Learn how to say NO!

Learn how to GLARE!

Learn how to say GO AWAY! (Use your own words here)

Learn how to say THANK YOU!

Learn how to SMILE!

Treatment:

Go to appointments prepared.

Be knowledgeable, find out. Leave appointments with results and knowledge.

For pills keep a medication chart or blister pack.

Side effects will happen, be prepared.

Needles come with the myeloma package, overcome the fear.

Day stay / treatment day: You will want to pee. Practice going to the toilet with the IV lines attached before you need to. Practice perfection.

Listen to your body, it’s yours, you know it well. When tired: sleep. When hungry: eat. When thirsty: drink. When you want to go to the toilet: go.

If you want to help me, spend a day in my body, with my pain, with my treatment, with my side effects, with my head space.

Say goodbye to mother ship when the treatment is over, move on.

Positives:

Celebrate success.

Practice positive visualisation.

Create some positive sayings that have meaning to you. Use the words “I” and “will”.

My treatment is working, I am healing, I will get better.

Worrying does not empty tomorrow of its troubles, it empties today of its strengths.

Take time off from being sick, have some fun.

You searched for that!

On my blog there is a site meter that shows the number of visits I receive. I can access my site meter and read where any referrals come from. Referrals from Google or other search engines make interesting reading.
Here is a short list of recent search results that were directed to my blog “Sid’s multiple myeloma journey”. (My reference posting is in brackets)

Diagnose
Multiple myeloma stage 0
How do you diagnose myeloma? (Pre diagnose)
Myeloma and hypercoagulable state.
Vision and myeloma. (Central vein occlusion)
Myeloma plasmacytoma. (History)

Pain
Bone pain myeloma; (Myeloma bone pain)
Myeloma pain relief; (Myeloma bone pain)
Could pelvis pain be multiple myeloma? (Myeloma bone pain)
Bone pain in humerus. (Myeloma bone pain)
How intense is myeloma bone pain. (Myeloma bone pain)

Treatment
Multiple myeloma VAD treatment. (My VAD treatment for myeloma)
Myeloma stage 3 treatment plan.
Tempazepan medication. (VAD treatment for myeloma)
Myeloma stage I, survivor’s natural treatment;
Sore bum while on chemotherapy. (Transplant dry skin)
Cold sores and myeloma. (Transplant dry skin)

Transplant
Stem cell transplant multiple myeloma. (Transplant stem cell collection)
Harvest stem cells in myeloma. (Transplant stem cell collection)
Myeloma stem cell mobilisation. (Transplant stem cell collection)
Baldness after myeloma transplant; (Transplant hair loss)
Relapsed multiple myeloma transplant will it help and work
Autologous stem cell transplant diarrhoea. (Transplant diarrhoea)
Multiple myeloma dry skin on legs; (Transplant dry skin)

Final stage
Final stage of myeloma. (Confronting death)
End stage multiple myeloma. (Confronting death)
Death from myeloma. (Confronting death)

General
Myeloma aggression or swearing or moods. (Dexamethasone)
Myeloma blog; (Sid’s multiple myeloma journey)
Positive affirmation forums: (Myeloma bone pain)
Affirmation survivor. (Myeloma bone pain)
Eating with myeloma. (Transplant food)
Foods for myeloma. (Transplant food)
Lemon juice for myeloma. (Transplant food)

Myeloma transplant - Caregiver

During transplant I needed a minder, an organizer, a caregiver, someone to look after all non medical matters that arose or needed attention during treatment. Of course there was only one person capable of all that, my wife Myra, that’s her occupation. What a peace of mind it was when she said, “Yes, I’ll do that”, and I remain eternally grateful to her.
Her role was invaluable. Though it was my transplant it wasn’t to be all Sid, this was a team effort. We talked it over beforehand, her fears, pressures, the downside, where she would need support and help. How could she take time out and recharge her batteries. Myra had to rearrange her life for 4 weeks, organize time off work. We organized a back up plan if she was sick and had other family members available to help when required.
Myra had to do what I could not do. In the BMTU I lost my independence, needed help and as it turned out was completely wasted for several days incapable of doing anything.
What were my needs, how did I want Myra to help?
Food: Covered in detail in a later posting. That was a big task. We were forewarned that hospital food was inadequate. During transplant Myra prepared and organized palatable food and liquids all approved by the hospital. Where it was stored and how I could access the food when she was not there.
Laundry: Myra did my laundry keeping 3 days ahead. I wanted to use my own pyjamas and underwear as much as possible (a feel good factor) though resorted to hospital issue during bad diarrhea times.
Exercise: I had an exercise programme by the hospital physiotherapist to follow, the aim being not to loose too much condition. Myra encouraged me when the fatigue set in. She kicked my butt for my own good.
Emotions: I needed emotional support, encouragement and monitoring. Making sure I expressed my emotions and did not ignore them. She kept me talking.
Observation: One of Myra’s strengths, observe my attitude, emotions, reactions, moods, health. Keep in touch with the nurses about her observations. She was first to pick up on several treatment reactions.
Diary: I keep a daily medical diary. On the days I couldn’t she would keep the diary up to date.
Communication: Keeping others up to date on my progress. This she delegated out. Several key people were kept up to date and they passed on information to others by phone, text and email.
Networking: Ward matters, talking to the nurses, other patients and caregivers, sharing knowledge and what’s happening in the ward. Creating a friendly environment. As Myra said, “It’s not all treatment, we still have to live.”
Home: Attend to mail, email, keep the home running, and pay the bills.
Clothing: Bring in additional clothing when needed.
Coordination: Coordinating my release, transport home, first week at home and transport to daystay until I could drive myself. (Myra does not drive).
Having Myra as a caregiver during my transplant was a success.

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]

Myeloma blogs 1

If you are reading my blog (Sid’s multiple myeloma journey) you may be interested in other myeloma blogs. There are many ways to find these blogs.
Here are the three main sources that I use to access other myeloma blogs.

Planet myeloma
A myeloma blog roll created by Beth who is a myeloma legend, blogging since 2003.
At last count there were links to 36 myeloma blogs: June 2009
On the left of her blog roll are links to postings on listed blogs that have been created in the previous seven days, updated hourly.
I access planet myeloma daily to view the new postings.
Well done Beth, you have given the world wide myeloma family an excellent source of myeloma blogs.

Multiple myeloma forums
Created by Andy, April 2009.
On the home page is a list of featured blogs with a link to the entire myeloma blog collection, 35 so far: June 2009
While in myelomaforums web site have a look around. There is a good forum, featured articles, myeloma news, RSS feeds and much more.

Google
Access your Google
Type myeloma blogs/enter.

Or
Type myeloma blogs.
Pick down arrow at top
Select “more”
Select blogs.
For the latest postings pick “sort by date”.

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.

Confronting death from myeloma

Multiple myeloma, a cancer that has no cure, prognosis varies, average 3 to 5 years. (2001)
When I was first diagnosed with myeloma in 2001 it was explained to me that myeloma can be treated successfully slowing down progression. There would be cycles of treatment, plateau stage (remission) and relapse. Eventually I would succumb to the effects of myeloma in some form; pneumonia, kidney failure or bone destruction were mentioned as common causes of death by myeloma.
No cure, no cure, no cure, death, death, death, echoes in my mind.
No cure and ultimately death were issues that I had to deal with. Death is generally a consequence of myeloma.
Initially there was a problem; I could not get my head around the no cure/death issue. Maybe it was part of my denial, the “not me” syndrome.
Aged 53, happily married, fully employed in a challenging job, my life was sweet. Except for deterioration in the previous 6 months I was fit, healthy, felt bullet proof. Death was not an issue I ever considered. Death happened to other people. I was too busy, too happy for death.
There was a problem, I had to get realistic, I could ignore death letting it nag away at me or I could deal with it. I chose to deal with it.
With help from the NZ Cancer Society counselling service I confronted death. Where was death, I could not see it, never had to. Death to me was hiding around a corner of a building. My aim was to walk around the corner, find death, grip it strongly and drag it back with me out into open spaces. There I could confront it, talk to it and ask questions, talk about it, a new experience for me. It took a while, lots of emotion, lots of tears, lots of help.
The process raised questions like: what happens when I die, where do I go after death, somewhere or nowhere, is there life after death, what are my religious beliefs, why me for this illness and death? Am I prepared for death, is my will up to date, are my finances in order? What sort of funeral service do I want, am I to be buried or cremated? And many more questions.
Was I premature in discussing all this in the first few months after diagnose? No, I don’t think so. It cleared the air for me , part of the process of accepting myeloma and allowed me to move forward focussing on survival.
On the question of religious belief. My faith has grown during my illness, changing from living in a Christian like manner to recently becoming a committed Christian. The power of prayer has amazed me. I felt very humble during my difficult times when hearing of the many groups and individuals praying for me, it made a difference, thank you.

Team Sid, a way forward

As part of my way forward to myeloma survival I created a team, “Team Sid”, a network of help and support for medical, emotional and logistical reasons.
“Team Sid” comprised myself of course, my wife Myra, family, GP, Haematologist, Hospital day stay staff, cancer society, Leukaemia and Blood, work, neighbours and others when needed. My number one team member was Myra who is a trained caregiver, I had the best. More about Myra and others in another posting.
Being the Boss and chief administrator of “Team Sid” I compiled a list of contacts; contact name, designation, address, phone and email.
Another list was a” how to/what if” list, how to do anything that arose without panic. How to arrange transport if I could not drive myself, public transport timetables. How to use the St John’s ambulance service in an emergency. How to use the hospital shuttle bus. What to do if my temperature rose. Who to contact if I fell ill at home, etc, etc.
One of regular my tasks was to maintain my appointment book up to date. Every appointment and meeting was entered then added to the kitchen calendar as backup. Another task was to maintain a daily diary of how I felt, medication, anything that could be of use at appointments. Initially I did not realise the significance of recording my test results. My doctor and Haematologist gave them to me verbally. Later I learnt from a support group member that I could have the results posted to me. Once that commenced I created a spread sheet to record results electronically.
There were times when I could not cope due to health and side effect issues. Myra had been briefed on the lists so stepped in to take over my role...
“Team Sid” members were all told that I was living with myeloma and would recover to good health again. I led by example with my positive attitude, negativity was not to be tolerated.
“I will get better”.
By creating “Team Sid” I took an active role in my recovery giving me a sense of control over my illness.
On reflection the main benefit of “Team Sid” was organisation. Having all my contact and what if information up to date and in one place. A system I still follow today.

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.

Needs assessor

At my first appointment with my Haematologist he arranged for a visit by a local district health board nurse to assess my needs.
My first need was a Lotto win. No luck there, they could not help with that.
The nurse came and assessed my condition, mobility, asked questions about how I was managing and explained what services they could offer.
We live in a two story town house. She asked about the stairs, they were no problems
for me as long as I took them slowly. The stairs were used as an important tool in my physical recovery. No obstacles inside or out were found.
Transport was not a big issue as I could still drive. Myra does not drive so options for when I could not drive were discussed. Myra was caring for me with showering, dressing and undressing, meals and doing the housework like only she can do.
After assessment it was decided that I would be provided with a shower chair and a bed lever and access to a physiotherapist for advice on exercise.
We have a large size shower with a slide shower complete with detachable head. The shower chair made it easier for me to shower and Myra to assist. Mobility and being unable to reach around my back or bend over were my problems.
Getting in and out of bed was a painful struggle. Myra had to assist me. The bed lever was a great help. With the base of the lever jammed between mattress and bed base it was very stable. Once I had sorted out a technique I felt more confident with it and did not need Myra’s help for that anymore.
Needs assessment NZ, a good practical service by caring people.