7 July 2009
Dear Friends,
Have you ever experienced that life takes you on a journey that ends where something started in a way - a coming full circle. That is how I feel now. You see as part of my treatment when I had cancer at age 12, I received radiation while lying in a hyperbaric oxygen tank. The tank was a glass cylinder where I lay on my back inside and they closed the door and pumped oxygen in and raised the pressure inside.
The rationale was that being in the oxygen tank would intensify the radiation treatment and be more successful in killing the cancer cells that were left after they removed the tumour. Unfortunately it was a very traumatic experience for me as I had very sensitive ears and ear drums and the pressure caused severe pain. The placed needles in my eardrums to relieve the pressure, but I still experienced discomfort. So they started giving me injections to calm me and that helped a bit, but during one of the last treatments I started feeling claustrophobic and I lost conciousness and my heart apparently stopped for a few minutes.
It was then that I had an out of body experience and saw myself moving to a tunnel of white light where I just felt free, peaceful and happy and I wanted to stay there. But I heard a voice say:" It's not your time." and I remember waking up and the doctor asking me if I want to go home.
During my recent operations the doctors found extensive radiation damage to the bone in my left hip area as well as growths caused by radiation damage around my colon. So the treatment that was used to save my life when I had cancer as a child caused damage that almost cost me my life 30 years later.
As I told you in previous posts I've been struggling with bladder infection and nerve pain since I've left the hospital and then 2 weeks ago my wound sister told me they have opened a new hyperbaric treatment centre at Tygerberg hospital. You see, treatment in such an oxygen tank without the radiation helps with wound healing as well as kill the acteria that cause infection. It is one of the treatments with the highest rates of success for conditions such as mine.
Then last week I heard the exciting news that they and the medical aid approved me as a candidate for the treatment. I started on Monday with my 2 hour sessions (I'll have to complete 20 sessions, 5 days a week). The way everything happened, the wonderfully professional and compassionate staff, and the fact that this time the treatment is painless and comfortable, feels quite miraculous.
When I'm in the chamber, I feel like I'm surrounded by the essence of life, I can visualise how my cells are rejoicing and renewing themselves. They do not have to deal with the unfortunate negative side effects that other forms of treatment and medicine often have.
So the circle is being closed and I feel within me there is a sense of things coming together and a feeling of new hope, gratitude, excitement and peace.
Thanks once more for all your support and thoughts and prayers that I believe help to co-create these opportunities of healing for me.
Tuesday, July 7, 2009
Monday, June 15, 2009
At home - the next chapter
12 June 2009
Dear Friends,
So many things have happened since my last post. The last time I celebrated the news that I was at last going home after months in hospital and then on the day I was supposed to go home, I received a call from my doctor saying that he wanted me to have the benefit of another 2 weeks of rehabilitation. Although I was a bit disappointed it turned out to be foresight on his part.
You see, I was so excited about not having the chronic pain and infection I lived with for the past 8 years, after the operations, that I was sure I’ve reached the end of my healing journey. However, during the extra time at the rehab centre, the pain spasms in my left leg returned.
At first we thought it might be triggered by the increased physical exercises I was doing and nerves and muscles waking up and me experiencing the discomfort that accompanies increasing capacity. It soon became clear that the pain was wound related as spasms were often triggered or eased when the wound sister cleaned the wounds.
So, the source of the pain is still a bit of a mystery, but we have now resolved to manage it with pain medication and give it time until the wounds have healed.
After my six weeks of intensive intravenous antibiotic treatment for the drug resistant strains of bacteria they discovered in the bone in the wounds, I was also excited about being free from infection after so many years. But unfortunately, being catheterised also means increased potential of bladder infection and so during the first week of my additional rehab time, I found myself back on oral antibiotics.
At the start of my last week of rehab, I woke up with a swollen leg. The sister called my GP and before I knew it I was on my way back to Vergelegen Medi-Clinic to get a sonar scan for a suspected deep vein thrombosis (DVT). So, just more than 4 months after first being admitted to the Medi Clinic, I found myself back in Ward G. The sonar showed no DVT, but my surgeon decided to keep me in hospital for a few days and give me some additional intravenous antibiotics to deal with whatever was causing the swelling in my left leg.
I arrived back at home on the 1st of June and have since just taken my time easing into the experience of being back in my own space again and trying to make sense of it all. During the first week I had some flashbacks to experiences in hospital, traumatic as well as funny and inspiring. The question that haunted me was: “What was the purpose of this experience, what was I supposed to learn from it and what should follow now?”
A stroke of insight
During my time at Medsac, the rehab facility, I met an amazing couple, a woman called Mavis, who is a stroke survivor and her husband Stan. Mavis had a severe stroke and there were times when doctors did not think she would make it, but Stan never gave up hope. I was so inspired by the love and commitment he showed by coming to exercise with her every morning at the rehab centre. Mavis is not yet able to talk or walk, but the first time I looked into her eyes I saw how she connected with me.
Stan introduced me to the book: “A stroke of insight” written by another stroke survivor called Jill Bolte Taylor. She was a neuro-anatomist or brain scientist who worked at the Harvard Brain Bank at the time when she had a stroke at age 37. In the book she shares about her amazing experience of consciously experiencing the stroke, losing most of her left brain capabilities and what helped her recover it again during an 8 year period.
Stan brought the book to me during my last week in hospital and I’ve been reading it since I’ve been home. It made me realise that I had to act on 2 impulses: one is to write a book about my experiences during my own healing journey and the other is to use the next 2-4 months of recovery time to start a campaign to bring Phage Therapy to South Africa.
Phage Therapy: the what and why
As shared in a previously, I was told by doctors in 2003 that they did not have a solution for the drug resistant form of bacterial bone infection I had and that I just had to manage it. However, both my GP and homeopath made it very clear that the level of infection I had could eventually cause organ failure. So, I worked with them to try and deal with the infection using homeopathic remedies and at times antibiotics.
In 2007 I saw a video about an alternative form of treatment called Phage Therapy which had a success rate of about 97% for dealing with drug resistant strains of infection like mine. I was planning to start a fundraising campaign to go for the treatment in Georgia near Russia, when I became critically ill and was admitted to hospital at the beginning of 2009.
Since being home, I’ve again developed some bladder and intestinal infection and am back on antibiotics. I was ready to move on, but I realise now there is a bigger picture here. As long as I am still recovering, I will be at risk of picking up new infections. I have a sense that the antibiotics are just repressing the infection and not really eradicating it fully. The fact is more and more people are developing drug resistant forms of infections (hospitals are full of them), so we need an alternative.
So, rather than seeing this as a set-back I’ve now chosen to see it as an opportunity. For my own healing and survival as well as those of many others (just think of all the people with HIV&AIDS that develop secondary infections), it is crucial to find alternative treatments. So, to tell you more about the wonder of Phage Therapy, I’ve created a blog (http://pagetherapytosouthafrica.blogspot.com/ ).
With the blog, I am initiating a campaign to explore bringing Phage Therapy to South Africa. By supporting me to raise the additional approximately R150 000 to cover the outstanding medical and my living costs for the next 4 months, you will also enable me to lobby the Health Minister to support this initiative.
I hope you will join me in this exciting adventure by visiting http://pagetherapytosouthafrica.blogspot.com/ .
Thank you so much for your wonderful support thus far.
Dear Friends,
So many things have happened since my last post. The last time I celebrated the news that I was at last going home after months in hospital and then on the day I was supposed to go home, I received a call from my doctor saying that he wanted me to have the benefit of another 2 weeks of rehabilitation. Although I was a bit disappointed it turned out to be foresight on his part.
You see, I was so excited about not having the chronic pain and infection I lived with for the past 8 years, after the operations, that I was sure I’ve reached the end of my healing journey. However, during the extra time at the rehab centre, the pain spasms in my left leg returned.
At first we thought it might be triggered by the increased physical exercises I was doing and nerves and muscles waking up and me experiencing the discomfort that accompanies increasing capacity. It soon became clear that the pain was wound related as spasms were often triggered or eased when the wound sister cleaned the wounds.
So, the source of the pain is still a bit of a mystery, but we have now resolved to manage it with pain medication and give it time until the wounds have healed.
After my six weeks of intensive intravenous antibiotic treatment for the drug resistant strains of bacteria they discovered in the bone in the wounds, I was also excited about being free from infection after so many years. But unfortunately, being catheterised also means increased potential of bladder infection and so during the first week of my additional rehab time, I found myself back on oral antibiotics.
At the start of my last week of rehab, I woke up with a swollen leg. The sister called my GP and before I knew it I was on my way back to Vergelegen Medi-Clinic to get a sonar scan for a suspected deep vein thrombosis (DVT). So, just more than 4 months after first being admitted to the Medi Clinic, I found myself back in Ward G. The sonar showed no DVT, but my surgeon decided to keep me in hospital for a few days and give me some additional intravenous antibiotics to deal with whatever was causing the swelling in my left leg.
I arrived back at home on the 1st of June and have since just taken my time easing into the experience of being back in my own space again and trying to make sense of it all. During the first week I had some flashbacks to experiences in hospital, traumatic as well as funny and inspiring. The question that haunted me was: “What was the purpose of this experience, what was I supposed to learn from it and what should follow now?”
A stroke of insight
During my time at Medsac, the rehab facility, I met an amazing couple, a woman called Mavis, who is a stroke survivor and her husband Stan. Mavis had a severe stroke and there were times when doctors did not think she would make it, but Stan never gave up hope. I was so inspired by the love and commitment he showed by coming to exercise with her every morning at the rehab centre. Mavis is not yet able to talk or walk, but the first time I looked into her eyes I saw how she connected with me.
Stan introduced me to the book: “A stroke of insight” written by another stroke survivor called Jill Bolte Taylor. She was a neuro-anatomist or brain scientist who worked at the Harvard Brain Bank at the time when she had a stroke at age 37. In the book she shares about her amazing experience of consciously experiencing the stroke, losing most of her left brain capabilities and what helped her recover it again during an 8 year period.
Stan brought the book to me during my last week in hospital and I’ve been reading it since I’ve been home. It made me realise that I had to act on 2 impulses: one is to write a book about my experiences during my own healing journey and the other is to use the next 2-4 months of recovery time to start a campaign to bring Phage Therapy to South Africa.
Phage Therapy: the what and why
As shared in a previously, I was told by doctors in 2003 that they did not have a solution for the drug resistant form of bacterial bone infection I had and that I just had to manage it. However, both my GP and homeopath made it very clear that the level of infection I had could eventually cause organ failure. So, I worked with them to try and deal with the infection using homeopathic remedies and at times antibiotics.
In 2007 I saw a video about an alternative form of treatment called Phage Therapy which had a success rate of about 97% for dealing with drug resistant strains of infection like mine. I was planning to start a fundraising campaign to go for the treatment in Georgia near Russia, when I became critically ill and was admitted to hospital at the beginning of 2009.
Since being home, I’ve again developed some bladder and intestinal infection and am back on antibiotics. I was ready to move on, but I realise now there is a bigger picture here. As long as I am still recovering, I will be at risk of picking up new infections. I have a sense that the antibiotics are just repressing the infection and not really eradicating it fully. The fact is more and more people are developing drug resistant forms of infections (hospitals are full of them), so we need an alternative.
So, rather than seeing this as a set-back I’ve now chosen to see it as an opportunity. For my own healing and survival as well as those of many others (just think of all the people with HIV&AIDS that develop secondary infections), it is crucial to find alternative treatments. So, to tell you more about the wonder of Phage Therapy, I’ve created a blog (http://pagetherapytosouthafrica.blogspot.com/ ).
With the blog, I am initiating a campaign to explore bringing Phage Therapy to South Africa. By supporting me to raise the additional approximately R150 000 to cover the outstanding medical and my living costs for the next 4 months, you will also enable me to lobby the Health Minister to support this initiative.
I hope you will join me in this exciting adventure by visiting http://pagetherapytosouthafrica.blogspot.com/ .
Thank you so much for your wonderful support thus far.
Monday, May 11, 2009
At last! Time to go home.
We have a date! After almost 4 months in hospital, it looks like I'll be going home on Thursday 14th May 09. If the latest blood tests (taken today) is positive, it means I am free of the chronic and severe bone infection that I lived with for the past 8 years. The next goalpost will be to ensure that the wounds heal completely or at least to the point where a skin transplant can be done. The challenge is to find a way to continue with the specialised wound treatment called VAC therapy that has so far helped to reduce the wound size considerably.
Since I have only a hospital plan, the medical aid will most likely not pay for continued use of VAC therapy when I go home. My wonderful doctor and wound sister is however busy motivating for the granting of cover for at least the next 2 months. But we have also thought of a Plan B: writing to the company supplying the VAC therapy to consider sponsoring the completion of my required VAC therapy. And in return they can then use me as a case study in their promotional material to show the effectiveness of this type of therapy to promote wound healing. So your positive throughts, intentions and prayers to help one of these options manifest will be greatly appreciated.
The second daunting, but also exciting challenge will be to raise enough funds through my trust fund and other means to cover the rest of my medical and living costs for the next 3-4 months. You see, with the wound healing as priority, I need to focus on getting enough rest and building my strenght through eating a protein rich diet and continuing with my daily physiotherapy. They weighed me last week, here at Medsac and I am now weighing 37kg while a normal target weight for me is closer to 50 plus kg's.
By the end of this week, I'll have a clearer picture of the fundraising target and strategy which will form part of the adventurous experiment which I want to call: "Accessing the Power of Now". So thanks again for all the emails, calls and facebook messages!
Have a great week
Jeanne
Since I have only a hospital plan, the medical aid will most likely not pay for continued use of VAC therapy when I go home. My wonderful doctor and wound sister is however busy motivating for the granting of cover for at least the next 2 months. But we have also thought of a Plan B: writing to the company supplying the VAC therapy to consider sponsoring the completion of my required VAC therapy. And in return they can then use me as a case study in their promotional material to show the effectiveness of this type of therapy to promote wound healing. So your positive throughts, intentions and prayers to help one of these options manifest will be greatly appreciated.
The second daunting, but also exciting challenge will be to raise enough funds through my trust fund and other means to cover the rest of my medical and living costs for the next 3-4 months. You see, with the wound healing as priority, I need to focus on getting enough rest and building my strenght through eating a protein rich diet and continuing with my daily physiotherapy. They weighed me last week, here at Medsac and I am now weighing 37kg while a normal target weight for me is closer to 50 plus kg's.
By the end of this week, I'll have a clearer picture of the fundraising target and strategy which will form part of the adventurous experiment which I want to call: "Accessing the Power of Now". So thanks again for all the emails, calls and facebook messages!
Have a great week
Jeanne
Monday, May 4, 2009
A life filled with miracles
I've created a blog to share with you the challenging, but also amazing journey I am experiencing. It is also my way of keeping everyone who is supporting me updated about my progress. Through telling my story I hope to demonstrate to you how life events has encouraged me to choose living an enabled life, rather than just simply living a mere existance focused on survival.
You see somewhere in my growing-up process, I internalised the message that I had to make it on my own. Only when I had no alternative to use a wheel chair, because of my health, did I learn that its ok to ask for and to receive support. My recent health crisis (see archive if you want to hear more), took this lesson to the next level. Becoming totally dependent, not even able to breathe, speak, eat or move, was my greatest fear in the past. But by going through this experience I discovered how not being in control opens opportunities to experience how much love and support there is all around us if only we allow it.
As I am learning to surrender and trust, events I experience as miraculous, is happening around me. After establishing the trust fund to support my recovery, enough money was donated to cover the most important expenses over the past 3 months. Thank you to each and everyone who made this possible. Also, the occupational therapists has put in an application to Discovey Health's Ex Gratia fund for a new wheelchair, a special wheel chair cushion and an air mattress for my bed at home. These assistive devices is essential to ensure my continued wound healing and recovery process. We heard today that our application was approved!
I will be going home within a week or two and we will be interviewing carers to support me at home, this week. My goal is to be strong enough to generate my own income in 4 months time so the next challenge is to raise enough money through the trust fund to cover my living and medical expenses during that time.
Thanks for taking an interest in my story. Till next time, from room 11 in Medsac, Strand.
Jeanne
You see somewhere in my growing-up process, I internalised the message that I had to make it on my own. Only when I had no alternative to use a wheel chair, because of my health, did I learn that its ok to ask for and to receive support. My recent health crisis (see archive if you want to hear more), took this lesson to the next level. Becoming totally dependent, not even able to breathe, speak, eat or move, was my greatest fear in the past. But by going through this experience I discovered how not being in control opens opportunities to experience how much love and support there is all around us if only we allow it.
As I am learning to surrender and trust, events I experience as miraculous, is happening around me. After establishing the trust fund to support my recovery, enough money was donated to cover the most important expenses over the past 3 months. Thank you to each and everyone who made this possible. Also, the occupational therapists has put in an application to Discovey Health's Ex Gratia fund for a new wheelchair, a special wheel chair cushion and an air mattress for my bed at home. These assistive devices is essential to ensure my continued wound healing and recovery process. We heard today that our application was approved!
I will be going home within a week or two and we will be interviewing carers to support me at home, this week. My goal is to be strong enough to generate my own income in 4 months time so the next challenge is to raise enough money through the trust fund to cover my living and medical expenses during that time.
Thanks for taking an interest in my story. Till next time, from room 11 in Medsac, Strand.
Jeanne
Trust fund
After 8 years of searching for the cause and cure for the health challenges that contributed to me becoming a wheelchair user, experiencing chronic pain, inflammation and digestive problems, I was admitted for emergency surgery in January 2009. I've now been in hospital for almost 5 months and my family have started a trust fund for me to help finance my recovery and living costs as I have not and will not be able to work for the next few months. The good news is we have discovered the cause of my ill health and the surgeries and subsequent treatment is providing a successful cure. If you are interested in supporting me in my process of recovery, you are welcome to either contribute to the trust fund, share my story with others or contact me (details are below).
Trust fund: LOUW DU PLESSIS (lawyers managing the fund)
Payment reference: J SMUTS (very important for tracking purposes)
Branch: SOMERSET WEST
Bank: FIRST NATIONAL BANK
Account number: 5368 0945 972
Branch code: 200-512
TRUST FUND: LOUW DU PLESSIS (lawyers managing the fund)
Payment reference: J SMUTS
Branch: SOMERSET WEST
Bank: FIRST NATIONAL BANK
Account number:53680945972
Branch code: 200-512
NB: Your reference: Please add your name, telephone number or email address.
If its an overseas payment please add Swift Code F I R N Z A J J
Trust fund: LOUW DU PLESSIS (lawyers managing the fund)
Payment reference: J SMUTS (very important for tracking purposes)
Branch: SOMERSET WEST
Bank: FIRST NATIONAL BANK
Account number: 5368 0945 972
Branch code: 200-512
TRUST FUND: LOUW DU PLESSIS (lawyers managing the fund)
Payment reference: J SMUTS
Branch: SOMERSET WEST
Bank: FIRST NATIONAL BANK
Account number:53680945972
Branch code: 200-512
NB: Your reference: Please add your name, telephone number or email address.
If its an overseas payment please add Swift Code F I R N Z A J J
Entering the rehab phase
On the 25th of February I was transferred to a general ward and 4 days later I could breathe and eat on my own. By the 6 of April I was transferred to Medsac, a hospital facility that specialise in rehabilitation. Here I am completing my last few weeks of intravenous antibiotic treatment to ensure that every trace of infection has been wiped out and I am receiving intensive physiotherapy and occupational therapy. We are also continuing with specialised wound care and the ultimate goal is to reach a point where the doctor can do a skin transplant and finally close the wounds.
Emergency admittance to hospital
On 21 January 2009, I was admitted to hospital for emergency surgery after becoming seriously sick the weekend before (I weighed 36kg). The first operation was done on the 23rd of January 2009 to investigate the source of the increased infection. They found and removed massive infection in both the bone and soft tissue and afterwards it was uncertain if I would ever be able to sit again. During the second colostomy operation, there were a number of complications, the first of which required of them to do a laparotomy. They then discovered a severely constricted small intestine as well as a colon surrounded by growths caused by radiation damage. That explained why I became ill again in 2000 and had such problems with food and digestion. The second problem was that my lungs became filled with water.
After the operations I was in a coma and the doctors did not think I would make it. My mother however assured them that I was a fighter and would pull through. After 4 days I regained consciousness, but could not speak, breathe, eat or move on my own. I could also not remember anything from arriving at the hospital till waking up again. My family and friends however made turns to come and visit each day to support and give me the courage to believe I will get better. There were times during my month stay in ICU when it all felt hopeless, but my family and GP convinced me that the miracle already happened and that it is not my time to die: I just had to focus on staying emotionally and spiritually strong and to concentrate on strengthening my lungs. So I shifted my attention to consciously choosing life and to be grateful for every breath that enables one to live.
After the operations I was in a coma and the doctors did not think I would make it. My mother however assured them that I was a fighter and would pull through. After 4 days I regained consciousness, but could not speak, breathe, eat or move on my own. I could also not remember anything from arriving at the hospital till waking up again. My family and friends however made turns to come and visit each day to support and give me the courage to believe I will get better. There were times during my month stay in ICU when it all felt hopeless, but my family and GP convinced me that the miracle already happened and that it is not my time to die: I just had to focus on staying emotionally and spiritually strong and to concentrate on strengthening my lungs. So I shifted my attention to consciously choosing life and to be grateful for every breath that enables one to live.
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