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…

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.
 

 

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.

When does the fear end?

Does the fear of recurrence ever truly end for a breast cancer survivor and how do we negate its power over us?

Read one woman’s experience in this great blog post

 

What is normal?

Let’s normalise a few things right now:

• There is no “right way” to make sense of what a cancer diagnosis means in anyone’s life
• We can’t expect everyone to react in a similar way, or say the same things as anyone else – each person is unique and of course their response to their cancer treatment will be individual as well;
• It’s very common for people to feel confused, disbelieving or angry when newly diagnosed, but this is not true for everyone;
• Sometimes our bodies even respond to the stress and shock with physical responses – headaches, nausea, diarrhea, sighing, poor sleep patterns etc; and
• Often people look forward to the end of treatment, but sometimes folks feel fearful, uncertain, or more emotional than they did during the treatment.

Blog by Clare Manicom, Oncology Social Worker

The importance of psycho-social care

First up, let’s be clear that our precious family members and our special friends cannot be our therapists.  The honest ones among them will tell you that they really don’t want to be our counsellors either – they just want to be their normal selves – mom, friend, cousin etc.

Then, while we’re being honest – most of us try to protect the people we love from the ugly, ungrateful, hurtful, or dark thoughts that we have around the topic of cancer, its treatment or an uncertain future.  Which makes it hard to truly share with any one person exactly what we’re thinking or feeling.

• We edit what we share
• We filter what we hear
• We are selective about what we remember

So suddenly it’s very clear that actually, it’s pretty tough chatting through our deep emotions with people who are important to us.  We might not have the words to say what we’re feeling, we might not know what to think.  We usually don’t even know where to begin with our emotional “stuff” that we’re told we have to “deal with”.

And that, very simply, is why it is so helpful to meet with a neutral, objective, trained and skilled person when you’re feeling scrambled, low, overwhelmed or plain pissed off.  It is a huge relief to offload on someone whose job it is not to judge you, but to listen to you.  Their job is to calmly provide a safe space where you can say what’s on your heart, cry or rant without hurting anyone’s feelings.

There will be times when that professional needs to challenge your opinions or perceptions, or may need to provide you with clear information that will help set you on a better path.  There are times that your listener may probe a little deeper, or may ask you questions that make you think and reflect more carefully – all this is part of your healing journey.

Seeing someone for emotional support might mean having a few sessions to examine different issues or concerns, or practice new skills in between sessions.  You will not always come away from a session smiling and jumping for joy – sometimes we need to have a “heavy session” that may include tears or rage, as a catharsis.  What you should feel every time is that you have been heard and acknowledged as an individual.  Often you will feel a sense of relief or lightness that you’ve been able to speak your mind – you’ve been brave and honest enough to express yourself and that is an important beginning point…

A social worker with medical or oncology experience will be able to provide emotional support with an understanding of the psychological impact of cancer and its treatment, as well as having insight into some of the practical challenges that people face.  Most State oncology departments employ social workers, and some private practices offer this service as well – ask your oncologist and ask again if you’re not given names to contact!

Some people are keen to join a support group when facing their illness and treatment.  As these groups are run in different ways by different organisations, ask your local clinic about what may be available in your area.  Remember that groups run for the purpose of sharing information are not designed to provide in-depth emotional support, so make enquiries about the purpose of the group, and about who runs it to help you decide whether it’s a comfortable place for you to be or not.

Social media may also be a source of general support but it’s advisable not to risk your in-depth personal emotions in a public forum, or to take advice from people who may not have the professional skills or training to provide psychological support.

Blog by Clare Manicom, Oncology Social Worker

#cancer85years – CANSA research

Through its Type A programme, offering funding to established researchers at South African universities and research institutions, CANSA is currently funding a number of projects addressing breast cancer.

These projects span a wide range in terms of types of research and focus areas. Several projects are looking at breast cancer prevention in basic science studies. Dr Donita Africander of University of Stellenbosch is examining the chemo-preventative properties of bio-identical hormones; Prof Anna-Mart Engelbrecht of University of Stellenbosch is examining whether melatonin can prevent the onset of breast cancer in a mouse model; Prof Ann Louw of University of Stellenbosch is looking at the chemopreventive action of a Cyclopia extract in rat models of breast cancer; while Dr Annadie Krygsman of University of Stellenbosch is examining whether simple dietary modification by restriction of carbohydrate and/or omega-6 fatty acids can prevent breast cancer development in the urban South African context.

A number of other projects are looking at genetic aspects of breast cancer which could impact early diagnosis. Dr Adrienne Edkins of Rhodes University is conducting an analysis of stem-cell associated genes in breast cancer as biomarkers and predictors of cancer malignancy. Prof Lizette Jansen van Rensburg of University of Pretoria is looking at the role of DNA homologous recombination genes in breast/ovarian cancer susceptibility; Dr Ans Baeyens of WITS is examining genetic screening of triple negative and young breast cancer patients in South Africa; while Prof Fourie Joubertof University of Pretoria is conducting an investigation into genetic variation in South African breast cancer patients using genome sequencing.

We are also funding projects in the areas of clinical and public health research. Dr  Herbert Cubasch of WITS and Prof Jennifer Moodley of UCT are both conducting projects that will contribute to our understanding of delays in seeking care and accessing treatment in women with breast cancer in South Africa, and may have significant outcomes for healthcare delivery.

Compiled by
Dr Melissa Wallace, Head of Research
Lorraine Govender, National Advocacy Co – ordinator