Living well, under the circumstances

Palliative care is a very misunderstood concept; mostly because people avoid thoughts of being seriously ill and needing the additional care that hospice and palliative care can provide. Yet, the relatively few people who do find their way to hospice, care always say “we should have done this much sooner”.

In general, people hearing the words ‘hospice’ or ‘palliative care’ think the care is provided to ease a person’s dying. In reality, the focus of hospice and palliative care is on living well under the circumstances of having a serious illness. Often the diagnosis and treatment of cancer means that we change our view of ourselves and become “patients”.

Palliative care helps us maintain our personhood so that the illness is only a part of who we are and not the whole. So when we do have the courage to read about palliative care, we find the focus is on living, describing quality of life, living as actively as possible and even prolonging life. Research has shown that palliative care provided alongside oncology care improves quality of life as reported by the person living with cancer, results in lower rates of depression and some extra time compared to patients only receiving oncology treatment. So the message is don’t agree with your oncologist, when he or she says “it’s too early for palliative care.”

How does palliative care achieve this? The first step is to listen to the person living with cancer, what are your wishes and preferences for care? What kind of person are you? What are you hoping for? Palliative care helps to distinguish the fixable from the non-fixable. If the cancer has spread and is no longer curable, palliative care doctors and nurses will make sure that the physical effects of cancer are controlled. Cancer patients can be completely pain-free, without distressing side effects (except for constipation which needs to be carefully treated).

Too many doctors and patients think that if you have cancer, you will have to endure pain. This is a fallacy. If your oncologist is not able to control your pain, it is essential that he refers you for palliative care or to a pain specialist to control your pain. The palliative care doctor will work with you to make sure you are completely pain-free. This can be achieved within 2 days and the short-term side effects of pain medication will wear off over a week so that you can be active and enjoy your family and social life again.

Palliative care doctors will also ask about other uncomfortable symptoms and make sure these are also treated. The palliative care team also listen to other concerns and help you to find emotional balance, considering the roller-coaster ride of dealing with cancer and all this means in our lives.

Read Amy’s palliative care story to find out how palliative care helped her live an active life with stage 4 inflammatory breast cancer.

https://getpalliativecare.org/living-well-serious-illness-amys-palliative-care-story/

or watch the You tube clip “you are a bridge” that describes palliative care.

Blog post by Dr Liz Gwyther
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What is palliative care?

handsPalliative care is a relatively new field in medicine. It was established because of a recognition that there is a wide range of care that is needed by patients and their loved ones who are facing a life threatening illness.

 

Palliative care is all about comfort and support. It can be accessed at any point during an illness, and brings in the specialist help of a team of doctors, nurses, spiritual advisors, pharmacists, nutritionists and social workers.

The whole point of palliative care is to add quality to life. it is designed to make things easier, to take away some of the stressors and to ensure that everything that needs to be done, is done.

In other words, palliative care is a holistic, patient-centred approach for all patients and their families from the moment of diagnosis of a life threatening illness. In South Africa, it has often been associated with end of life care, but according to the World Health organisation’s definition, it ‘is applicable early in the course of illness, in conjunction with other therapies that are implemented to prolong life or cure the illness’.

Palliative care is vital, as was outlined in this article from Daily Maverick and in this article on HealthE.

You can find out more about palliative care here.

The Hospice Palliative Care Association’s website is also a wealth of information.
 

 

Nearing the end

We are nearing the end of the breast cancer journey that we have walked with you over the past few years. This blog has become a great resource for people who are experiencing their own cancer journeys, either themselves or with a loved one.

As we prepare the final posts, about palliative care and grieving, we found this link which we thought you would enjoy.

A woman named Heather McManamy passed away at age 36 from breast cancer. One of her last requests was that her husband Jeff McManamy share a letter she wrote to friends and family. It is, of course, heartbreaking. But it’s also funny and smart, and worth reading.

You can find it here.

A 2400 journey of hope

Cancervive travelled 2400km across the Western Cape and the Eastern Cape provinces of South Africa, from 08 – 18 September through the varying landscapes of lush vegetation, unkempt wildness and stretches of desolation, to raise awareness about cancer.

From the farming communities of Caledon, Riviersonderend, Swellendam and Riversdale through the glorious Garden Route all the way to rural schools and factories, the message “Early detection saves lives” was shared by survivors who have walked the cancer journey and bear testament to this statement, with their own bruised bodies and yet determined spirits. The power of their personal words of survival brought hope to those who often feel isolated in communities where the stigma of living with this dread disease is prevalent. The opportunity to interact with the survivors made room for many to ask gnawing questions that they otherwise would not have had the courage to ask openly or known who to ask.

The vibrant youth at schools were receptive to our entertaining performers but also paid keen attention to the delivery of relatable messages from survivors diagnosed with cancer as young as the ages of 7 and 13 as well as in their 20’s, as they demonstrated the importance of the message of survival due to early detection, which may at times mean living without some important parts of one’s body. From the packed school halls and where none were big enough to accommodate the crowds, the school fields, there was no space too inadequate for us not to reach out.

Young and old cancer survivors and supporters once again left a memorable trail of a pink, purple and blue rainbow of hope in rural and urban communities. Through testimonials from survivors as well as soothing sessions of song and dance, this diverse group of dedicated foot soldiers delicately presented messages of early detection, survival and celebrating life while living with cancer.

http://www.plwc.org.za/

The ride of a lifetime

riding-into-the-community-of-missionvaleCancervive, the dynamic project of People Living With Cancer, embarked on its colourful annual cancer awareness ride for 10 consecutive days during the month of September. Upon our return, we reflect on the impact of this internationally hailed education and awareness campaign that has now spanned 6 years.

Our entourage of survivors, supporters and crew, transported in generously sponsored motorbikes and vehicles received a spirited send-off from the SABC 3 Expresso Morning Show studios during our first ever live TV launch. This presented an opportunity for our organisation to reach a wider audience before engaging one-on-one on the road. We thereafter rode straight into the heart of this initiative, which is to provide a shoulder to lean on for anyone undergoing the cancer journey.

The first of our caring sessions took place in the wards of Red Cross War Memorial Hospital in Cape Town where all admitted children were treated to bedside visits and gifts from our sponsors, which were handed to them by our survivors and supporters. This same sentiment of sharing and caring characterised the rest of our journey as we gave of our time to patients living with cancer at Livingstone Hospital in Port Elizabeth where we entertained and educated through song and dance on the hospital’s lawns and later at the newly-built Oncology Unit of Frere Hospital in East London with its doors open to us to engage with men and women who had travelled long distances from villages, townships and the immediate urban community to receive much-need cancer treatment.

The cancer journey is often lonesome and it was a privilege to have the opportunity to offer hugs and the simple words of encouragement, “You are not alone” to those who desperately long to hear them, not only at hospitals but also at various facilities such as the Missionvale Care Centre, in Adelaide and the homes of young cancer patients from the Little Fighters Cancer Trust, whom we visited.

http://www.plwc.org.za/

Sad loss of a strong woman

A sad day for us – Tobeka Daki a HER2+ breast cancer survivor and our Face of the FTPL campaign for trastuzumab passed away earlier yesterday at her home in East London. Tobeka was not provided with the option for the treatment with trastuzumab at public hospital level. Although this treatment is available for the public sector at a negotiated price, many treatment centres are not able to provide this treatment due to the high price of the drug. It is currently only available at one public sector hospital in the country, thus exacerbating the issues around inequitable access to cancer treatment. We are in process of a submission to the Minister of Health in this regard at their request.
whatsapp-image-2016-09-28-at-11-00-29We are aware that there are many more similar stories such as Tobeka’s and we want you to share this with us. It is our mission to advocate and lobby in a responsible manner for equitable access to cancer treatment for all South Africans.
To all the Cancer Alliance and FTPL members that were able to support Tobeka and her family in her last days – THANK YOU. This is what partnerships are all about.
 

TOGETHER WE CAN – it is not beyond us.
#WeCanICan

Kindest regards
CANCER ALLIANCE EXCO:
Nersan Govender, Linda Greeff, Liz Gwyther, Alana James, Elize Joubert, Adri Ludick, Salomé Meyer, Esme Pudule

I’M(POSSIBLE)

“Nusha Loubser” ~ Photographed by Tracey Derrick

50 years old,  | Hairdresser  |  Vredenberg

Diagnosed: 1st November 2005 – mastectomy, chemotherapy and tamoxifen for five years.

“The worst was losing my hair and being so tired, yet we believe all things are possible like the Word of God reminds us in the Bible.” 

advocates-for-breast-cancer_blog_tracey-derrick_nusha-loubser