I found my ears

One of the positives from having myeloma is I found my ears!
Before myeloma I was a typical male, didn’t listen, wouldn’t listen, too busy too listen.
As my daughter used to say, “Dad, your ears are painted on”. Though I wouldn’t admit it, she was right.
Being diagnosed with myeloma, learning about myeloma and going through initial treatment I had to gain knowledge by listening to and trusting others. This is when I had to stop, shut up and listen. Good things happened when I learnt to listen.
I realised that the 2 lugs on the side of my head had another purpose other than holding my glasses on, they are a listening device. When I stopped and listened people made sense.
Learning to listen has been one of my survival skills.

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.

Myeloma transplant - Hair loss

Hair loss during myeloma stem cell transplant is inevitable as it is a side effect of the conditioning therapy.
Anticipating this and to keep hygienic, the day before entering the BMTU I had my head hair trimmed back to a number 2 and gave my beard a close trim.
Hair loss became noticeable about day 10 especially after showering. Eventually I lost 90% of my hair with only some minor body hair remaining. Be prepared for loss of hair from head, facial, eyebrows, nasal hair and public areas.
What surprised me was the loss of anal hair. I did not realise its presence until I wiped my anus and felt a different sensation.
Another surprise was the amount of heat loss from a shaven or bald head. To overcome this I always wore a cap or beanie. At night when it was cold I kept my beanie on. Myra knitted me a beanie in my Waikato rugby team colours. She knits loose letting a bit more air in so I wore that one when it became too hot for the others.
Having no hair and dry skin I maintained my moisturising all over including the scalp.
After transplant I always covered up or used sun block when outside. I have a fair complexion and can sun burn easily.
Hair re growth was first noticed 7 weeks after transplant day 1. My head hair grew back soft, golden and wavy. Pre transplant it was straight and grey/blonde. My beard grew back patchy so I shaved. It took a further 6 weeks before it grew back with normal coverage.
I was reluctant to look at myself in the mirror with a bald head; it wasn’t the me I was used to.
Two of my female myeloma friends were blessed with a stunning “chemo perm” after their ASCT, tight and curly. Both said it was a darker colour.
One amusing thing happened. Myra was helping me shower in the BMTU; I was having a difficult day feeling fatigued.
She said, “Look down there.”
“Where?” I replied
She said “Down there, the family jewels.”
So I looked, not a pretty sight at the best of times. It was disgusting, Looked like a plucked chicken, size 1. I made a mental note not to look again for a very long time.
There was an interesting reaction from our 2 grand children aged 8 and 5 after returning home from my second transplant in 2008. I had my cap on and asked if they would like to see my bald head. They said “Yes”. After taking my cap off there was a gasp and a step backwards, they did not like to see Grandad with no hair so the cap went back on.

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]

Glossary:
ASCT: Autologous stem cell transplant.
BMTU: Bone marrow transplant unit.

Urine sample for myeloma, no worries

My first visit to the neighbourhood Med Lab for myeloma blood tests became a challenge.
When I was a little boy my Mum told me if I was going out I had to do three things before leaving the house. Put a clean handkerchief in my pocket, wear a clean pair of underwear and empty my bladder. Being the best behaved boy in our street, a very long street, and having always listened to my Mum I still do this today.
Armed with my blood test form, clean handkerchief in pocket, a clean pair of underwear on and empty bladder I drove to the Med Lab for the first time not really knowing what it was all about.
On arrival the nurse took my card then said” Mr Hider, you are required to give us a urine sample” and gave me the sample tube.
Looking bemused I said “What do I do with this?”
“Go to the toilet, you will find the instructions on the toilet wall.” She said.
Now, I have a self belief that I can do anything, learnt at a school in Hamilton, Maeroa Intermediate. “No worries” I said.
Off I went into the toilet to read the instructions and provide the sample.
Simple. Pass urine into the toilet. At mid-stream put some into the container provided. Fill the sample tube. Clean up. Hand the sample tube back to the nurse.
So I started the process……and waited……and waited……and waited. Nothing happened. This required drastic action, I shook it, jumped up and down……still nothing. Starting to panic I did the little boys trick, turned the basin taps on and waited……and waited……and waited. Again nothing happened.
Looking embarrassed I went back to the nurse to explain that I could not provide a urine sample. She gave me a stern look and a huge brown paper bag with a sample tube and container in and said “take this home, drink lots of water, try again then bring it back.”
It’s all Mum’s fault. That’s what happens when you listen to your mother.
On my next visit I was determined to be prepared so drank lots of water and did not leave home until I felt I was ready. Stopping off at the local shops for a newspaper I got delayed talking to a friend. By the time I arrived at the Med Lab I was busting for a wee. Getting out of the car and standing up I knew I was in trouble. Putting my hand in my pocket I manually manipulated my pressure relief valve to prevent an overflow.
When opening the Med Lab door my heart sank, oh no, standing room only putting me at the end of the queue. Sheepishly I approached the nurse and said” I need to pass a urine sample, NOW.”
She gave me a sample tube and very quickly my sample was back with her.
The moral of this story; don’t always do what your mother says.
Who said there’s no fun having cancer?

There's a rat eating my hand

A work colleague at the time of my DVT was Richard whose wife is a doctor. Richard is a good husband who listens to his wife so has gained an above average knowledge of medical matters.
Richard said to me “Sid, you are taking warfrin. Do you realise that warfrin is a rat poison?”
“No” I said. “That’s great, I am being stuffed full of chemo and now they give me rat poison”.
That night while sleeping Myra heard me making strange noises, trying to talk and becoming distressed. At that time I was on morphine for pain relief and suffered a morphine side effect of a dry mouth. Because of bone damage I could only sleep on my back which gave me a tendency to sleep with my mouth open that also gave me a dry mouth. I woke with a very dry mouth, so dry I could not talk, just gasp and grunt like an animal. Myra got out of bed to find my water bottle, gave me water to moisten my mouth and tried to calm me down.
Distressed I said to her "There’s a rat eating my hand, there’s a rat eating my hand”.
Myra looked at my hand and assured me that there was no rat and my hand was still intact and uneaten.
Continuing I said “It must be somewhere, look under the bed”.
Myra looked under the bed. “No rat there” she said.
I have a vivid imagination and often have dreams, usually a good dream rarely a bad dream. My arm was out of the bed on a strange angle causing my hand to suffer pins and needles. This put my subconscious into overdrive. Warfrin, rat poison, pain in hand, I dreamt that there was a rat eating my hand. It was scary at the time, now a good laugh.
Who said there’s no fun having cancer?

Glossary.
Morphine: A drug extracted from opium used in medicine as an anaesthetic and sedative.