‘Lymphoedema not end of life’

2018-07-12 06:00
Lymphoedema patient Joanna Thomas with the “horrible and awful” bandage she has had to wear since she was diagnosed with the incurable condition.          PHOTOS: luvuyo mjekula

Lymphoedema patient Joanna Thomas with the “horrible and awful” bandage she has had to wear since she was diagnosed with the incurable condition. PHOTOS: luvuyo mjekula

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Living with lymphoedema may be challenging and the bandages “awful and horrible”, but there is hope.

So said Joanna Thomas, of Rondebosch East, at an event to spread awareness last week.

Lymphoedema is a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system. The condition is most frequently a complication of cancer treatment or parasitic infections, but it can also be seen in a number of genetic disorders. Although it is incurable, it can be treated.

A number of people living with the condition as well as health professionals, gathered at the Nico Malan Recreational Hall on Saturday 7 July to share information on treatment. The event was organised by Colleen Marco from the Cancer Association of South Africa and Rogini Pillay from Western Cape Health.

Thomas (59) relived her struggles spanning a major part of the past decade. She has been diagnosed with lymphoedema and cancer in the past eight years.

She used the event to give hope to fellow patients.

“I was diagnosed with breast cancer in 2011. It came as a tremendous shock to me because I was a very healthy person, I was very diet conscious and I was a road runner,” she said.

After undergoing surgery, Thomas was told she was a high risk for lymphoedema but went through with chemotherapy and radiation.

“Praise God by the end 2011 I was declared cancer free,” she said, to loud applause.

However, things were about to turn for the worse as in early 2012, while on holiday, she noticed swelling on her arm while washing dishes. “I immediately knew lymphoedema had set in.”

Fortunately a nearby private doctor gave her antibiotics­.

She told the gathering that a mosquito bite triggered her lymphoedema and “of course once triggered it was permanent­”.

After doctors at Groote Schuur Hospital confirmed she had lymphoedema, measured her arm and gave her a bandage, reality set in. “I left the hospital feeling depressed. I stepped outside and said ‘oh my word I am disabled now’.”

Her sister put her in touch with Marco, a therapist at the time. In 2012 she underwent manual lymph drainage and bandaging. She also joined a support group.

“But the bandaging is awful, it is horrible. Can you imagine four of these (pointing to the bandage covering her entire arm) in your arm? And beneath there is protection, so there are six things on your arm, the arm is thick and heavy and I could not sleep and I said to (Marco): ‘I can’t do this’. I was a mother and grandmother at the time and could not be bothered with bandages. But six years later here I am,” said Thomas.

The expression soon changed as she recalled that just last year in November, she was diagnosed with stage four cancer. “It was back to treatment again, tests revealed cancer was in all of my bones from my skull all the way to my feet, and my spine. I was limping and had lots of pain.”

Marco advised her to register with a hospice. “It was one of the best things I have done, hospice is not about dying, it’s actually about quality living. Their motto is live until you die,” she said.

Thomas is currently in a hospice support group.

“Here is part of the hope I want to give you – in 2012 this (bandaging) is all Groote Schuur could do. But in 2018 they have a whole lymphoedema unit and is housed in the occupational therapy department and there is all kinds of amazing treatment.

“Look at the progress. There is help even in South Africa,” she said.

Thomas is now on chemotherapy.

“I had a few weeks to live if nothing was done in November last year. But eight months later here I am.”

She encouraged those living with the condition to follow treatment and live life.

“I am trying my best. I can still live a meaningful productive life. I want to encourage you and the people who help us, you do a tremendous job,” she said.

Living with lymphoedema may be challenging and the bandages “awful and horrible”, but there is hope.

So said Joanna Thomas, of Rondebosch East, at an event to spread awareness last week.

Lymphoedema is a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system. The condition is most frequently a complication of cancer treatment or parasitic infections, but it can also be seen in a number of genetic disorders. Although it is incurable, it can be treated.

A number of people living with the condition as well as health professionals, gathered at the Nico Malan Recreational Hall on Saturday 7 July to share information on treatment. The event was organised by Colleen Marco from the Cancer Association of South Africa and Rogini Pillay from Western Cape Health.

Thomas (59) relived her struggles spanning a major part of the past decade. She has been diagnosed with lymphoedema and cancer in the past eight years.

She used the event to give hope to fellow patients. “I was diagnosed with breast cancer in 2011. It came as a tremendous shock to me because I was a very healthy person, I was very diet conscious and I was a road runner,” she said.

After undergoing surgery, Thomas was told she was a high risk for lymphoedema but went through with chemotherapy and radiation.

“Praise God by the end 2011 I was declared cancer free,” she said, to loud applause.

However, things were about to turn for the worse as in early 2012, while on holiday, she noticed swelling on her arm while washing dishes. “I immediately knew lymphoedema had set in.”

Fortunately a nearby private doctor gave her antibiotics.

She told the gathering that a mosquito bite triggered her lymphoedema and “of course once triggered it was permanent”.

After doctors at Groote Schuur Hospital confirmed she had lymphoedema, measured her arm and gave her a bandage, reality set in. “I left the hospital feeling depressed. I stepped outside and said ‘oh my word I am disabled now’.”

Her sister put her in touch with Marco, a therapist at the time. In 2012 she underwent manual lymph drainage and bandaging. She also joined a support group. “But the bandaging is awful, it is horrible. Can you imagine four of these (pointing to the bandage covering her entire arm) in your arm? And beneath there is protection, so there are six things on your arm, the arm is thick and heavy and I could not sleep and I said to (Marco): ‘I can’t do this’. I was a mother and grandmother at the time and could not be bothered with bandages. But six years later here I am,” said Thomas, proudly.V Continued on page 4.

Living with lymphoedema may be challenging and the bandages “awful and horrible”, but there is hope.

So said Joanna Thomas, of Rondebosch East, at an event to spread awareness last week.

Lymphoedema is a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system. The condition is most frequently a complication of cancer treatment or parasitic infections, but it can also be seen in a number of genetic disorders. Although it is incurable, it can be treated.

A number of people living with the condition as well as health professionals, gathered at the Nico Malan Recreational Hall on Saturday 7 July to share information on treatment. The event was organised by Colleen Marco from the Cancer Association of South Africa and Rogini Pillay from Western Cape Health.

Thomas (59) relived her struggles spanning a major part of the past decade. She has been diagnosed with lymphoedema and cancer in the past eight years.

She used the event to give hope to fellow patients.

“I was diagnosed with breast cancer in 2011. It came as a tremendous shock to me because I was a very healthy person, I was very diet conscious and I was a road runner,” she said.

After undergoing surgery, Thomas was told she was a high risk for lymphoedema but went through with chemotherapy and radiation.

“Praise God by the end 2011 I was declared cancer free,” she said, to loud applause.

However, things were about to turn for the worse as in early 2012, while on holiday, she noticed swelling on her arm while washing dishes. “I immediately knew lymphoedema had set in.”

Fortunately a nearby private doctor gave her antibiotics.

She told the gathering that a mosquito bite triggered her lymphoedema and “of course once triggered it was permanent”.

After doctors at Groote Schuur Hospital confirmed she had lymphoedema, measured her arm and gave her a bandage, reality set in. “I left the hospital feeling depressed. I stepped outside and said ‘oh my word I am disabled now’.”

Her sister put her in touch with Marco, a therapist at the time. In 2012 she underwent manual lymph drainage and bandaging. She also joined a support group. “But the bandaging is awful, it is horrible. Can you imagine four of these (pointing to the bandage covering her entire arm) in your arm? And beneath there is protection, so there are six things on your arm, the arm is thick and heavy and I could not sleep and I said to (Marco): ‘I can’t do this’. I was a mother and grandmother at the time and could not be bothered with bandages. But six years later here I am,” said Thomas, proudly.

The expression soon changed as she recalled that just last year in November, she was diagnosed with stage four cancer. “It was back to treatment again, tests revealed cancer was in all of my bones from my skull all the way to my feet, and my spine. I was limping and had lots of pain.”

Marco advised her to register with a hospice. “It was one of the best things I have done, hospice is not about dying, it’s actually about quality living. Their motto is live until you die,” she said.

Thomas is currently in a hospice support group.

“Here is part of the hope I want to give you – in 2012 this (bandaging) is all Groote Schuur could do. But in 2018 they have a whole lymphoedema unit and is housed in the occupational therapy department and there is all kinds of amazing treatment.

“Look at the progress. There is help even in South Africa,” she said.

Thomas is now on chemotherapy.

“I had a few weeks to live if nothing was done in November last year. But eight months later here I am.”

She encouraged those living with the condition to follow treatment and live life.

“I am trying my best. I can still live a meaningful productive life. I want to encourage you and the people who help us, you do a tremendous job,” she said.

Living with lymphoedema may be challenging and the bandages “awful and horrible”, but there is hope.

So said Joanna Thomas, of Rondebosch East, at an event to spread awareness last week.

Lymphoedema is a condition of localized fluid retention and tissue swelling caused by a compromised lymphatic system. The condition is most frequently a complication of cancer treatment or parasitic infections, but it can also be seen in a number of genetic disorders. Although it is incurable, it can be treated.

A number of people living with the condition as well as health professionals, gathered at the Nico Malan Recreational Hall on Saturday 7 July to share information on treatment. The event was organised by Colleen Marco from the Cancer Association of South Africa and Rogini Pillay from Western Cape Health.

Thomas (59) relived her struggles spanning a major part of the past decade. She has been diagnosed with lymphoedema and cancer in the past eight years.

She used the event to give hope to fellow patients. “I was diagnosed with breast cancer in 2011. It came as a tremendous shock to me because I was a very healthy person, I was very diet conscious and I was a road runner,” she said.

After undergoing surgery, Thomas was told she was a high risk for lymphoedema but went through with chemotherapy and radiation.

“Praise God by the end 2011 I was declared cancer free,” she said, to loud applause.

However, things were about to turn for the worse as in early 2012, while on holiday, she noticed swelling on her arm while washing dishes. “I immediately knew lymphoedema had set in.”

Fortunately a nearby private doctor gave her antibiotics.

She told the gathering that a mosquito bite triggered her lymphoedema and “of course once triggered it was permanent”.

After doctors at Groote Schuur Hospital confirmed she had lymphoedema, measured her arm and gave her a bandage, reality set in. “I left the hospital feeling depressed. I stepped outside and said ‘oh my word I am disabled now’.”

Her sister put her in touch with Marco, a therapist at the time. In 2012 she underwent manual lymph drainage and bandaging. She also joined a support group. “But the bandaging is awful, it is horrible. Can you imagine four of these (pointing to the bandage covering her entire arm) in your arm? And beneath there is protection, so there are six things on your arm, the arm is thick and heavy and I could not sleep and I said to (Marco): ‘I can’t do this’. I was a mother and grandmother at the time and could not be bothered with bandages. But six years later here I am,” said Thomas, proudly.V Continued on page 4.

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