March 23, 2005

For Malcolm

My entry this time will have to be fully in English. I have written to Malcolm that I would be writing about him in my blog.

I first "met" Malcolm in 2002, although we were colleagues, at that point we did not meet, because I am in Malaysia and he is in the UK. We were working together 3 ways, Malcolm in the UK, Ashok was in the US and I was in Malaysia. We were preparing business case for work in Asia Pacific and my concern was naturally getting more work for the factory here in Malaysia. As time goes by, due to the economic downturn, Ashok had to leave, I was sad because I know I have lost a colleague, a contact person who may be able to bring this project through to sucess and at the same time I was thinking that I would have to start all obver again.
But I still have Malcolm at that point. Our weekly conference was reduced from 3 ways to 2 and that made it easier for me because I did not have to do the call at home and at night due to the time difference.

I was shocked when Malcolm dropped the bombshell so to speak. I was reduced to tears eventhough I had not met him. He told me that he was going to take an early retirement. He was doing it because he has a health problem. Much that I wanted to be selfish by asking him not to leave (purely on professional basis), I could not bring myself to say so.

I had the priviledge of meeting Malcolm when I was in the UK in 2003. We get on well and we are still friend untill now. I have sent him some tumeric (kunyit hidup) because I read it somewhere that someone had done a research and found that tumeric is one of the possible cure for his condition. I had also send a recipe for Rendang which he had done a marvellous job with it. I have a photo to prove it. That would be part of me to promote Malaysia overseas. We have been in constant contact until now. We are the best of friends, right Malcolm?

I have encouraged him to write his experience down into a blog and below is his story. I am doing this as a kickstart, I hope, for him to start a blog soon. I do hope if anyone has got any information anything cure, would come forward with suggestions for Malcolm.

He has asked me about Mangosteen juice, to help him reduce his eczema, and he has given me this website www.xango.net/index_flash.html

This is Malcolm's story:

Multiple Myeloma (Pre-diagnosis to current day)


Background
I had always been very healthy. The last time I can remember staying overnight in a Hospital was when I had my tonsils and adenoids removed at the age of 7. This good health I took totally for granted and worked very hard on progressing my career and renovating our Edwardian family house.
I am not sure exactly when, but in the late 1990’s I started to notice a lack of energy. I had always been a "morning" person, and the start of a new day I always felt invigorated and ready to go regardless of what had happened during the previous day(s). Now, some mornings I would wake up with less energy than when I went to sleep, and I began to realise that things were not right. Initially I put this change down to:


1) Reaching middle-age (46)
2)The frustrations of trying to guide 3 children through their teenage years
3)Working for a once great company (M******) that appeared to be in terminal decline and taking my career with it.

4) Close relationships that were not providing the nourishment that I thought I needed

In early 2002 I got a kidney infection. It was extremely painful and tried my usual trick of just keeping going regardless, but one night the pain was so bad my wife persuaded me to go and see the emergency doctor. He diagnosed the infection and said "Men (unlike women) do not get a kidney infection without a reason – it could be a stone, prostate or something else – you need to find the cause"
That was the spur I needed and resolved to sort this out. The GPs initially diagnosis was depression and some mild sleeping tablets were prescribed, despite the fact that I said I did not think I was the kind of person to get depressed. After some pressure, the GP agreed to refer me to a Urologist for further investigations. These investigations, including a rather uncomfortable cystoscopy, found nothing so the urologist referred me to another doctor who did some full spectrum blood and urine tests. These were all OK apart from a slightly elevated ESR and paraprotein, so he referred me to a Haematologist to "investigate this abnormality which was probably nothing to worry about"

Diagnosis
The Haematologist did some more tests including my first bone marrow (20-30% abnormal plasma cells in the marrow) and asked me to come back in a week for the results. At this stage I did not have a clue that there was anything really seriously wrong with me – let alone cancer. I had never heard of Myeloma before and the haematologist’s reassurance that although my cancer was incurable it was treatable did not make me feel any better! He also pointed out that I would be dead in a matter of months without treatment.

Hexplained it would be best if I had this treatment as near to home as possible, so he was going to transfer me to more local hospital under a different haematologist. This new haematologist did some more tests, decided I was "smouldering", that I did not need treatment yet and should be retested every four weeks. He also told me to expect infections and gave me various emergency numbers to call in case.
Initially I felt cheated that the treatment was not going to start immediately, but he explained that there was no evidence that early treatment improved survival and we should wait until the MM became active.
He also arranged my first bisphosphonate infusion (initially pamidronate and then zoledronate) that I have had every 4 weeks since.

Key Events:
Feb 02 - Kidney Infection
Oct 02 - Initial bone marrow and MM diagnosis
Mar 03 - First IMF seminar in Manchester, where I met my first other smouldering patient who told me about Michael Gerrin-Tosh & The Bristol Cancer Centre and made me realise that I should take control of what was happening to me rather than assuming that the hospital specialists had all the answers.
Apr 03 - Retired from M******. This was initially to secure the financial situation for the family - if I had been made redundant or M****** had gone under, my pension benefits would have been drastically reduced leaving the family with almost with nothing. I now realise it was probably the best thing I could have done – it allowed me time (I had been doing a 10-12 hour day) to find out more about MM and possible treatments AND perhaps most importantly lifted a huge hidden emotional strain from me.
May 03 – Attended the "Journey Intensive" weekend workshop with Brandon Bays and began my emotional detox process.
Found local therapist to continue this "detox" process and revealed a load of emotional baggage that I was carrying (and a lot associated bitterness and anger) and various poor mental habits that were exacerbating the problem. This therapist introduced me to the Sedona Method (for releasing fear and anxiety) and Byron Katie’s "The Work" (which can be summarized in the phrase "loving what is" - recognizing that suffering comes from expecting something {or someone} to be different than it actually is. This work included a firewalk – barefoot walk across burning embers a@ 1200 degrees C!
June 03 - Became increasingly aware of the importance of diet and nutrition through books by Patrick Quillan and the Bristol Cancer Centre recommendations. Started taking supplements, eliminated dairy & red meat and started buying organic produce. Totally frustrated by haematologist whose response to my questions on diet etc was that it was important to keep weight on during the treatment and that there was a special diet of chicken nuggets, ice cream and mars bars for transplant patients!!
Attended the Gerson Training Day to learn all about Max Gerson’s nutritional based cancer therapy – and found that it requires a strict vegan diet of organic food with no salt, nuts or fat, 12 freshly made juices and 4/5 coffee enemas a day. The trainer suggested that it was a full time job just preparing the food and juices so a patient would have to have a very supportive family or paid help – at a total cost of £18000 pa. Although very interested decided not to pursue on the grounds of cost and the feeling that it was rather old-fashioned.
Sep 03 - Introduced to Ayurvedic thinking by a Deepac Chopra trained practitioner. This really demonstrated the enormous significance of mind/body connection, and I really began to understand why meditation and relaxation is so important – and why Michael Gerrin-Tosh does his bone-breathing exercises
Oct 03 – Had all my amalgam fillings safely removed. Tests had shown that:
I was extremely sensitive to Mercury
The cell-mediated part of my immune system was only just working, partly due to being overloaded with mercury
10 times the EU limit of mercury vapour was "leaking" from my teeth into my body every time I ate
Nov 03 – Started metabolic therapy based on B17 (laetrile). This was initially by chewing my way through 50 apricot kernels a day and subsequently through 500mg B17 tablets and pancreatic enzymes (I stopped this after 3 months – it had no effect on my levels and I developed an ache in both kidneys which I thought maybe due to the B17 toxicity)
May 04 – Contracted my first bad infection that started as a cold and went to my chest. This, and some new back pain, made me think that the long awaited "active" phase of the myeloma had started. I had been considering doing the NCTT naturopathic approach (an updated version of Gerson designed by Lawrence Plaskett which uses special supplements and requires on 6 juices/day) for some time and this triggered my decision to start – I was concerned that I had left it too late?
June 04 - Based on my symptoms and a rather selective view of some test result changes, my haematologist did another bone marrow and arranged for my back to be scanned. The verbal feedback from him was not good – abnormality in marrow now 40-50%, and slight lesions on 2/3 vertebrae in my spine – and he wanted to start treatment straight away and told me to not to lift anything and to limit my driving. Fortunately he was due to go on holiday, and then so were we, so it was agreed to delay until after the holidays. While he was away I went into the Hospital for my zometa infusion as usual and tried to get a copy of the MRI scan. The hospital would not give me a copy but another doctor explained that my spine was completely clear of myeloma!!
I was both ecstatic and confused at the same time with this news. Why had my haematologist tried to trick me into starting treatment? I decided 2 things very quickly:
I would really enjoy my holiday with the family (swimming & surfing in France)
I would start the NCTT therapy immediately
July 04 - Having re-read MG-T’s book decide to try acupuncture and start weekly sessions with a Chinese trained doctor – ongoing.
Nov 04 - 4 months into the NCTT therapy and results are not getting better, but they are not getting any worse either

Key lessons (so far):


There is a huge amount of information about cancer and its treatments, but this takes a while to digest, piece together and relate to your own circumstances
Most specialists are blinkered and don’t know (or don’t want to know) about alternatives or their potential impacts
Diet, nutrition, emotional state, environment and lifestyle are the main factors that determine the incidence and progress of cancer
The emotions of the mind are stored in the body; toxic thoughts = toxic body
Feelings of isolation and suppressing emotions stop the immune system from effectively working

All I can give to Malcolm is frienship and encouragement for him to carry on with his life. I do want to see him get well. If you know anything, I do hope you could help out. At the same time, we also need to know that we should not take our health for granted.

Thank you

14 comments:

Kak Teh said...

auntyN, we find that there's so much in the market with promises of treatment etc, yet at the end of the day we find that its all about politics and money. A friend who is undergoing treatment for cancer is being shunted here and there because they know she has money and will do anything. It is sad when it happens to someone you know and even sadder when you have nothing to offer but doa. I am sure Malcolm appreciate your friendship and your concern.

AuntyN said...

Kak Teh, thank you, I know how u feel with the recent lost. I know Malcolm does appreciate my friendship and concern.

Batrisya88 said...

ermmm semoga Malcolm berjaya mengatasinya..
susah gaks nih..nak rekomen2 ubat apa sbab x sama penyakit..paperpun semoga dier cepat sembuh.. Aminnnn

miz_ct said...

AN, am sorry to read abt Malcolm.. hope he'll find the best treatment.. and for us who are still well and dandy.. don't take health for granted.. u can go downhill anytime.. so fast sometimes u don't know what hit u..

AuntyN said...

Bat : Thx for your prayer

Nek_ct : that's the other purpose of this entry, we should not take health for granted. Thanks

Anonymous said...

AuntyN,

I'd like to dedicate a piece of this presentation by Ralph Marston at "http://positivepause.com/" for your friend Malcolm. There's no easy words to inspire someone who is battling with a life threatening illness such as the one he's dealing with.

I hope he's not worry too much of what lies ahead of him. None of us gonna be here forever. Easier said and done, but it's all really in the state of our mind.. I hope your friend will deal with that and be able to cope with the uncertainty of his illness and to have a very supportive family..

Om

AuntyN said...

Om : Thanks, I'm sure he'll appreciate that.

atenah said...

*which can be summarized in the phrase "loving what is" - recognizing that suffering comes from expecting something {or someone} to be different than it actually is*
Pls AN, can i get more info on this? May be Malcolm can tell me where to get the info? I will pray for Malcolm. I hope he will stay strong.

shidah said...

he's so blessed to have a friend like you.

Lollies said...

Indeed Aunty N, you are a good fiend and probably that's what he need. Consolation and an ear or eyes (reading)

Mutiara said...

AuntyN
Perhaps Malcolm would like to look up this website
http://myeloma.uams.edu/

AuntyN said...

Tenah : I'll ask Malcolm and let u know later.

Shidah, Lollies, Mutiara : Thank you ladies, I will do the same for any one of my friends.

pak sheikh said...

aunty n ini pak sheikh tell malcolm that gerson therapy really works together with medical ozone rectal insuflation ..... insha Allah (God willing)

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