Advocacy pays off!

In 2014 we set out with the vision of an equitable and sustainable breast cancer policy for all. This policy was approved in April and was officially launched in East London on Friday. This is indeed an achievement! This means that our advocacy pays off.

Even though the policy was approved – the policy is by far not complete as there are still gaps in the policy. The decision was to focus on Phase 1 to ensure that the treatment aspects are in place before focusing on the community awareness and clinical breast examination as well as the supportive care and palliative care aspects. Other gaps are the provisioning of lymphoedema and prosthetic services. We need to make sure that these aspects get the attention that they require in the future.

The policy will be implemented first in five treatment centres: Groote Schuur in Western Cape, Helen Joseph/Charlotte Maxeke in Gauteng, Frere and Livingstone in Eastern Cape and Universitas in Bloemfontein. All of these were selected as they are already in line with the breast policy.

The Breast Cancer policy is at  http://www.health.gov.za/index.php/shortcodes/2015-03-29-10-42-47/2015-04-30-08-18-10/2015-04-30-08-24-27?download=2300:breast-cancer-policy-2017.

You may also be aware of the Tobeka Daki Trastuzumab Access Campaign. Trastuzumab is included in the policy and subsequently added to the Essential Medicines List. This in itself is also a win as there was quite a resistance from the EML Committee to add traztuzumab due to cost. This has opened the case for trastuzumab to be included as a PMB for private sector clients. There are already some patients that are approaching their respective funders.

Access to trastuzumab in the public sector in particular depends on the successful completion of negotiations for an acceptable price, as explained in the BDLive story  (here as “fair use”).

The reality of this is that at this stage there is only one company – Roche – that has a registered drug. Mylan and Amgen are both busy with clinical trials. Mylan has already applied to register their product, however their product is still under review by the FDA and our our MCC still need to get their systems in place for the approval of biosimilars. If the Department of Health want to procure this drug then they must follow the tender route and that would mean that only Roche would effectively be able to tender and these tenders last for two years. The reality is further that even though it is part if the policy, the provinces are responsible for the implementation of the policy and therefor provide the budget for the drug. Some of the treatment centres have already indicated that they would not have the budget for trastuzumab irrespective of price. It would therefor seem as of our advocacy effort will have to take on these access issues as well at a later stage.

For your information the updated cervical cancer policy 2017 is at http://www.health.gov.za/index.php/shortcodes/2015-03-29-10-42-47/2015-04-30-08-18-10/2015-04-30-08-24-27?download=2299:cervical-cancer-policy-2017. The main changes in this policy is

• Taking cognisance of  new technologies namely Liquid Based Cytology
• Test and treat on site at the health facilities
• Guidelines for a full continuum of care

It is worthwhile that organisations also study the content of this policy as the global movement is to focus on women’s health.

The Palliative Care Policy is not yet available

What’s next?

Thank you for being part 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.

At the moment there are no plans to continue posts on this blog, but it will remain as a really useful resource.

We are currently concentrating our advocacy efforts at https://www.canceralliance.co.za/, where you can find our ‘Lets Talk About Cancer’ toolkit as well as Photovoice cancer patient stories and a wealth of other information.

Aluta Continua!

Finding meaning in grief

For many of us, the ‘festive season’ is anything but festive as it reminds us of loved ones lost, or of easier, healthier times. Clinical psychologist Marc Lipshitz has written three blog posts that will help you through the grieving process. This is the third.

Willingness to face the truth of what we have lost either through death or illness and to experience the full range of our feelings is the beginning of acceptance. It is also, more often than not, the beginning of a fuller appreciation of who we are and what we are capable of becoming because grief causes us to look inwards and question.

People who are able to confront and understand their feelings about loss discover in the process that they are more resilient than they had imagined themselves to be. The more they learn about themselves, the more they seem to believe that they can get through their pain and carry on with their lives.

The search for meaning in your experience of loss can help you to endure the intense emotions of grief. Victor Frankl made an important discovery when he was interned in concentration camps: that we, as human beings, can bear immense suffering and emotional pain as long as we have a reason for doing so. By finding a reason or personal meaning in your loss, you can then find meaning in the emotional suffering of your loss. Emotional pain, as uncomfortable and distressing as it can be, provides an opportunity for personal growth- movement toward who you want to be.

Pleasure and pain are two sides of the same coin of our ability to feel. To deny ourselves the ability to feel grief or to avoid the emotions of grief would be to erode the essence of our human capacity for deep, intimate love.

Pleasure and pain always come and go; they are impermanent. Personal growth and self-actualisation stay with you for the rest of your life.

 

The grieving process

For many of us, the ‘festive season’ is anything but festive as it reminds us of loved ones lost, or of easier, healthier times. Clinical psychologist Marc Lipshitz has written three blog posts that will help you through the grieving process. This is the second.

Grieving is an active process that the griever needs to engage with. It does not passively happen to you but requires hard work and effort. Grief involves choices in coping because we can also choose not to grieve.

Think of a past or current loss that you have not fully grieved. What was or is the reason for this? See if the list below resonates:

• Fear of having to deal with prior losses (as current losses trigger previous losses)

 

• Fear of the unknown and change (especially if this is your first significant loss)

 

• Having other commitments or being too busy(as a result lacking the time)

 

• Being overly medicated (psychiatric medication can numb/dull feelings if the dosage is too high)

 

• Fear of going crazy, losing control or becoming depressed (as a result fear of being trapped in a depression)

 

• Experiencing too many losses at once (this is referred to as bereavement overload)

 

• Lacking the right support (support availability is not the same as support satisfaction- I can have lots of people around me but not one person that I can turn to)

 

• Already being disconnected from your feelings at the time of the loss (in other words I arrive disconnected)

 

• Having difficulty tolerating strong emotions (thus soothing feelings with substances or food and never feeling the feelings)

 

• Believing it was not culturally acceptable to mourn the loss (especially if there was stigma around the death, for example, HIV/Aids or suicide)

Grieving is a non-linear process that occurs cyclically with no specific end point. It involves alternating periods of intensification and subsiding of symptoms. Symptoms may return for years after the loss. The grieving process is highly personal and individualistic involving progress and setbacks- four steps forwards and three steps backwards.

One benchmark of grief that has been processed, and worked through is when the person is able to think of the deceased without pain. There is always a sense of sadness but it is a different kind of sadness- it lacks the wrenching quality it previously had. The griever is able to stay connected to the deceased by redefining the relationship whilst reinvesting his or her emotions into life and in living…

Grieving mindfully

For many of us, the ‘festive season’ is anything but festive as it reminds us of loved ones lost, or of easier, healthier times. Clinical psychologist Marc Lipshitz has written three blog posts that will help you through the grieving process. This is the first.

Grief is a personal journey never the same for any two people, and as unique as your life and your relationships.

Grief may be the experience of continuing to love someone after they die, of longing for a loved one’s presence, and yet knowing that is no longer available. However, grief is not limited to loss through death. Every time you lose a relationship or are faced with uncertainty, you grieve the loss of a predictable and safe world. You experience grief when you move to a new town, lose a job, or go through a divorce. You experience grief when you are diagnosed with a life-changing illness, or when you are separated from a loved one by circumstance. You experience grief when you experience any change in your relationship with yourself or to the world.

Paradoxically, it is often when you try to resist the intense emotions of grief that they linger, and even hurt more deeply when they inevitably surface. Grieving is the process of using your emotional vulnerability not to suffer greater distress, or to intensify your pain but to redirect this pain toward your growth as a human being.

Engaging in this process begins when you come in full contact with yourself and learn to ride the waves of grief. Your thoughts, your feelings, your identity during a life-threatening illness or after loss of a loved one all become vehicles for your own evolution.

Grieving can be understood as making the decision to allow yourself to mourn, and to fully experience the lessons of grief with the goal of living life better. The terrible emotional pain of grief tends to have a life and process of its own. Allowing the process to unfold does not remove all distress but it can soften the sharp edge of pain. To allow the process means to allow yourself to feel and experience each day on its own terms; we cannot assume that we know what tomorrow will bring.

As you are experiencing this process, you will feel that very natural pull to escape or numb yourself from the pain. However, by being aware of grief rather than ignoring or denying it, and by working to understand what drives this pain, you can release yourself into the person you are and the person you want to be. In other words, you can move closer to the people in your life who matter the most, and begin to change habits or beliefs that have been keeping you from living fully.

Just as love depends on the courage to share yourself with another person, grieving depends on the courage to accept your own feelings.

We have a tendency to associate grief and distress with something being wrong. Loss and grief is a part of life. It will happen no matter what we do. If we view grief as a problem, we will think of one of the most natural parts of life, and love, as a pathology or “disorder.” But grief has always been part of the order of things, and it always will be.

Care and compassion

We asked Helderberg Hospice to give us an overview of their services so that our readers could get a better understanding of how the hospice and palliative care system works.  South Africa has a number of hospice and palliative care units. For a list, click here

Helderberg Hospice

Our team of dedicated Palliative Care trained Nursing Sisters form the basis of our palliative care service. We work in an interdisciplinary team, including our part time doctor, social workers, volunteers, and other relevant role players to provide optimal holistic care to each and every one of our patients.

We encourage patients faced with a life-threatening illness to ask their doctor to refer them to us as early as possible, preferably when diagnosed. All referrals come through the nursing services manager’s office and a nurse will be allocated depending on the residential area in which the patient lives.

After doing a first assessment, the patient’s exact needs are identified and all the team players are involved. Our focus as palliative care specialists is to improve the quality of life of patients and their families. As there are many problems associated with life-threatening illness, including symptom control, physical, psychosocial and spiritual issues, these all need to be addressed by our team. The relief of suffering is our main goal and is addressed immediately.

With breast cancer we also focus our attention on the loss of dignity and sexual attraction which has an emotional impact on our patients. We therefore advise on choices available regarding prostheses, wigs, etc. Our nursing department consists of a home care unit, and an in patient unit, which work interactively and interdependently to provide holistic, patient centred care.

Home Care Unit

We have a team of six sisters, who currently care for 150 patients in their own homes. These medical professionals work with patients to help them cope with any and all aspects of their lives, from the side effects of treatment such as constipation, nausea, etc, to emotional issues such as depression, and practical issues. Patients and their families are holistically supported throughout the progress of the patient’s disease. This includes helping them to come to terms with the emotional, spiritual and practical issues. Sometimes symptoms are not well controlled, the patient or the family needs temporary respite, and the patient is admitted to the in patient unit for a maximum stay of fourteen days.

In Patient Unit

The unit consists of 10 beds which are continuously in use with a high occupancy rate. The IPU is a 24hour facility and our nurses work shifts to ensure optimum care. Our fully staffed unit addresses every need of all concerned. We provide pain and symptom management, control of medication, and counselling support for the patient and family in a controlled environment. Our doctor does ward rounds on a Tuesday and Thursday morning, and is part of our interdisciplinary team which meets every Tuesday, where all patients and their care is discussed in detail. Continuous in-service training keeps all staff well trained in order to optimise our palliative care.

Education and training is an integrated part of our Hospice and all members are exposed to discussion forums and external courses to be able to function at their very best. Taking care of the carer with debriefing sessions and teambuilding sessions are also high on our priority list.

Patient care enquiries can be dealt with by a professional nurse in the In Patient Unit 24 hours per day.

Please call us at +27 (0) 21 852 4608.
Email : info@helderberghospice.org.za
Website : http://www.helderberghospice.org.za
Facebook : https://www.facebook.com/helderberghospice
Twitter : https://twitter.com/helderberghospi

 

 

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

What is palliative care?

Palliative 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.