Thursday, April 16, 2009

First hospital appointment

My first appointment at Auckland hospital (June 2001) was to have tests to confirm that I had myeloma. At 53 years of age I had led a healthy life style until myeloma appeared, the hospital system was a new experience for me. Suffering bone pain at the time with its associated limited mobility I turned up feeling rather apprehensive.
Lots of questions were asked of me followed by a physical examination, blood tests, x-rays and bone marrow biopsy. At the end of day there were no answers though an acknowledgement that there was an 80% chance of my illness being myeloma. Answers would be revealed the following week.
A positive was meeting and dealing for the first time with a medical team at haematology that set a high standard from day one. Being new to the system I had a large number of questions that were answered diligently, I was impressed.
Leaving hospital my apprehension had disappeared. I felt in good hands while needing to discover how I could respond to be a pro-active patient. Being a passive patient was not good enough for me.

Tuesday, April 14, 2009

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.

Sunday, April 12, 2009

Myeloma DVT

Five days after diagnose for myeloma (June 2001) I developed a pain in my right calf. Being optimistic I assumed it was a muscle strain, “No worries, it will be better next week” I said.
It was getting worse. When I limped into the day stay clinic limping and supported by a crutch the registrar took one look at me and said “That maybe a DVT”. He explained that it was quite common for myeloma patients to have a DVT.
With myeloma the myeloma proteins bind to normal blood clotting factors increasing the chance of blood clotting.
The Register examined my leg, asked about the symptoms. Common symptoms of DVT are pain, swelling, redness and warmth all of which I had in my leg. He then sent me off for an ultra sound scan resulting in confirmation of a DVT.
The treatment was 7 days of heparin injections followed by warfrin tablets to thin the blood and close monitoring. It soon cleared.
No more DVT’s have occurred since though I have had a central retina vein thrombosis in my right eye (Oct 2001) and left eye (April 2005). Both were considered myeloma related and both cleared after 3 months. More about them in later postings.

Glossary;
DVT (deep vein thrombosis): Term used to describe blood clots that form generally in the deep veins of the legs.
Heparin: An anticoagulant that slows down the clotting mechanism and allows your body to break down the clot.
Warfarin: An anti coagulant drug used to prevent the blood from clotting and to treat blood clots.
Anticoagulant: A substance that prevents the clotting of blood.

Tuesday, April 7, 2009

What is multiple myeloma

This could get complicated so I revert back to one of my life’s philosophies KISS “keep it simple Sid”.
This is a simple explanation from myeloma UK:

Myeloma, also known as multiple myeloma, is a type of bone marrow cancer arising from plasma cells, which are normally found in the bone marrow. Plasma cells form part of your immune system.
Normal plasma cells produce antibodies (also called immunoglobulins) to help fight infection. In myeloma, the abnormal plasma cells release only one type of antibody known as paraprotein which has no useful function. It is often through the measurement of this paraprotein that myeloma is diagnosed and monitored.
Bone marrow is the 'spongy' material found in the centre of larger bones in the body. As well as being home to plasma cells, the bone marrow is the centre of blood cell production (red blood cells, white blood cells and platelets).
In myeloma, the DNA of a plasma cell is damaged causing it to become malignant or cancerous. These abnormal plasma cells are known as myeloma cells. Unlike many cancers, myeloma does not exist as a lump or tumour. Instead, the myeloma cells normally divide and expand within the bone marrow.
Myeloma affects multiple (hence multiple myeloma) places in the body where bone marrow is normally active in an adult, i.e. within the bones of the spine, skull, pelvis, the rib cage, and the areas around the shoulders and hips. The areas usually not affected are the extremities: that is the hands, feet, and lower arm / leg regions. This is very important since the function of these critical areas is usually fully retained.
Most of the medical problems related to myeloma are caused by the build up of myeloma cells in the bone marrow and the presence of the paraprotein in the blood or in the urine. Common problems are bone pain, bone fractures, tiredness (due to anaemia), frequent or recurrent infections (such as bacterial pneumonia, urinary tract infections and shingles), kidney damage and hypercalcaemia.
There have been many new developments in the treatment and management of myeloma over the last few years that have had a significant impact on the way myeloma is treated. Research is on-going to develop new treatments and to use existing treatments in a better, more effective way.
Treatments for myeloma can be very effective at halting its progress, controlling the symptoms, and improving quality of life, but they are not able to cure it. Even after successful treatment, regular monitoring is needed in case the myeloma comes back.

More in depth information can be found:
Here (myeloma UK)
Or here (multiple myeloma research foundation USA)

Glossary:
Antibodies: Naturally produced proteins in the blood that destroy or neutralise specific toxins or infections such as viruses.
Hypercalcemia: Abnormally high levels of calcium in the blood.

Saturday, April 4, 2009

You have cancer

June 1st 2001.
My GP said “Sid, you have multiple myeloma. It’s a cancer of the blood. YOU HAVE CANCER.”
My world stood still, I was in shock, speechless, becoming emotional. It was that C word: cancer.
I went into denial. It can’t be, anything but cancer. The results are not mine, there must be a mix up, they must be some one else’s. I’m too busy to have cancer, too much work. I’ve no time to be sick, I work for Beca. I thought I was bullet proof.
He said it again “You have cancer, multiple myeloma.”
Tears flowed and I slowly realised the truth. The good news was there was finally a diagnose of my medical condition, it had a name multiple myeloma. The bad news was it was cancer.
Action was spontaneous. My pain relief was upgraded to morphine, contact was made with Auckland hospital haematology and an appointment made for the following week. An assessment by the hospital needs assessor was arranged.
Back home I began the task of phoning people to give them the news. When I phoned work my Boss was unavailable so I passed the news onto my good colleague Ross. That is I tried to. The tears flowed again. Eventually Ross got the message. During a crisis there are some compassionate and understanding people about and Ross is one of those.
There was only one difficult one, my mother 84 at the time. Normally I do a difficult task first then all else seems easy. This time I couldn’t so left it to last.
“Hi Mum” I said, “I have some news about my health. I have c…….”. Couldn’t finish, couldn’t say the C word, I was crying uncontrollably. Myra finished the call for me.
That night Myra and I read our big blue medicine book “The New Zealand Home Guide to Health and Medicine” published 1991.
The last paragraph of the multiple myeloma section read: “There is no cure to multiple myeloma and treatment is aimed to reduce the symptoms and prolong life. Potent cytotoxic drugs and radiotherapy are the most common forms of treatment used. Patients survive for one to four years after diagnose, depending upon their age, the aggressiveness of the cancer and their general health.”
That’s marvellous, a cancer with no cure, short survival, all doom and gloom.
Later I would learn talk to the medical professionals and only use up to date information.

Glossary:
Cancer: Disease due to the uncontrolled growth, accumulation, division and maturation of cells. (Maturation: the process of becoming mature)
Cytotoxic drugs: Anti-cancer drugs that act by killing or preventing the division of cells.
Haematology: The study of diseases of the blood and bone marrow.
Multiple myeloma: A cancer caused by uncontrolled growth or proliferation of plasma cells which make antibodies in the bone marrow.
Radiotherapy: Radiation therapy, high-energy rays used to damage cancer cells and stop them from growing and dividing.

Monday, March 30, 2009

Follow my blog by email alert

Like to know how to follow my blog by receiving an email alert each time I make a new posting.
This comes from the Google Blogger Help Group:
http://groups.google.com/group/blogger-help/web/faqs

Feeds, promotion and search indexing.
4. How do I notify people of updates to my blog?
Blog Alert will send your family and friends daily email notifications when there are new posts to your blog. They don’t need an account. They just need your feed URL and their email address.

Click on this link to access Blog alert. http://www.shootthebreeze.net/blogalert/index.php

Enter this information into the dialogue box.
Feed URL; http://supersidnz.blogspot.com/atom.xml
Email; Your email address
Submit.
You will receive an email notification from Blog Alert for your confirmation.
After confirmation, when I make a new posting you will receive an email from Blog Alert that contains a link to my posting and the first 20 lines of my posting.
Click on my posting link to view the full posting.
Included in the email is a link to click if you no longer whish to receive Blog Alerts for my blog.

Friday, March 27, 2009

Follow my blog by feeds

Like to know how to follow my blog and too afraid to ask? Here is some help.
The assumption is your computer operating system is the same as mine; windows XP and internet explorer7. I am not sure how things work on other systems. See, I’m not perfect after all!
Following blogs by feeds is the easiest way I have found though it does rely on the blogs feeds being set up properly.

Feeds:
What is a site feed? An explanation is in this link.
http://help.blogger.com/bin/answer.py?hl=en&answer=41450

Before starting, pick favourites center. For those who have never done that before (and I know 2 who are in that basket) that’s the big yellow star at top left.
There you will see favourites/feeds/history. Feeds are where we look for any feeds.

How to subscribe to my blog:
Scroll down to the bottom of my blog.
Pick subscribe to: Posts (Atom)
In the new window that appears pick “subscribe to this feed”
In the Subscribe to this feed dialogue box:
Name: retain default or edit or write what you want.
Create in: Your choice, default feeds directory or create a sub folder.
Pick subscribe.
The blog feed page opens.
Close the feeds page.
Pick favourites center then feeds.
There you will see my blog name or the name you wrote.
My blog is scanned regularly by feed readers. When I have made a new posting my blog name will be in bold text.
My blog feed is set up to show all postings in full. Other blogs maybe set up differently.
Helpful comments are appreciated.

Saturday, March 21, 2009

Myelomaforum

There's a new kid in town, myelomaforum.
We all search the internet for myeloma information, here is a web site forum just getting off the ground dedicated solely to multiple myeloma.
I encourage you to have a look.
Here is their press release.

NEW FORUM DEDICATED STRICTLY TO MULTIPLE MYELOMA
Lakewood Ranch, FL – There's a new forum in town and it's dedicated strictly to Multiple Myeloma.
The forum was started by Andrew Smith of Lakewood Ranch, FL, after his uncle was diagnosed with Stage III Multiple Myeloma.
The forum was started to help promote communication among the Myeloma community; Allowing each member to make the most informed decisions possible about their treatment options and life style. By sharing information members can learn:
- What treatments are available in different locations.
- What doctors and organizations are most knowledgeable.
- What drugs and medication are available, safe, and effective.
- What diets work the best.
- What alternative treatments are available.
- How great people really are in this world.

For more information visit http://www.myelomaforums.com
-END

Tuesday, March 17, 2009

Medical records

To keep my postings accurate I need my medical records.
Therefore I am delaying postings for a month as I have requested my medical records from the hospital. This is free and takes up to 20 working days to arrive.
"If you are going to do something, do it properly".

Tuesday, March 3, 2009

Health update #02 3rd March 09

Today was my bi-monthly hospital consultation with my Haematologist and monthly infusion of aredia.
It is now 7 months since stem cell transplant #02. All my test results came in normal again similar to the previous update. I am a very happy chappie, humble that I have a second chance.
At the beginning of February I finished my controlled morphine reduction programme by stopping the M-elson (slow release morphine) altogether. That gave me my usual morphine withdrawal symptoms of restless legs at night for 7 nights though no mood issues this time. One of the side effects of morphine for me was drowsiness. Sleep is not as good now, our summer humidity not helping there. What I need to do is get into a regular sleep routine by going to sleep at the same time every evening, easier said than done. Distractions of blog, sport on TV, internet are a weakness for me.
My right arm is progressing well benefiting from regular exercise.
Peripheral neuropathy in my feet has not reduced. A scalp massager from the $2 shop has been added to my foot and leg massage tools and is now my number one massage aid.
I had a good talk to my Haematologist today.
He agreed that the morphine had masked the effects of peripheral neuropathy. That explains why it was increasing as the morphine dosage reduced.
Myra wanted to know how many others have had a second stem cell transplant. He said it was uncommon in NZ, about two a year at Auckland hospital. Mine was the only one in 2008. The contributing factors are stem cell availability, health, age, previous response and how active the multiple myeloma is.
Stem cell transplant #03 was raised by me. It is not feasible to harvest any more of my stem cells as the bone marrow has been damaged by the chemotherapy agent melphalan used during transplant.
Next consultation and health update will be 26th May.