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
hpca

From Strength to Strength: Survivor Stories

In keeping with our powerful visual storytelling theme (which we’ll unveil tomorrow!) for Breast Cancer Awareness Month 2016, have a look at our stunningly successful vlog (video + blog = blog) series from last year’s October: Walk With Me — a collection of interviews-cum-stories as told by South African breast cancer survivors themselves!

Subscribe to the Youtube channel HERE!

Videos of interviews with South African breast cancer survivors - ABC: Advocates For Breast 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

 

quote-you-gain-strength-courage-and-confidence-by-every-experience-in-which-you-really-stop-to-look-fear-eleanor-roosevelt-262769

A voice for the voiceless

 

IMG-20150715-WA0000My name is Martie Westraad. I am 53 years old and live in Suiderberg, Pretoria. 

I was worried and concerned about my breast as I could see something terrible was wrong with my one breast. I first went to CANSA in Rietfontein. They referred me to Pink Drive, who immediately referred me to George Makhuri Hospital in Ga-rankuwa. 

I was diagnosed with stage 3 advanced breast cancer in March of 2016 after all the required test were done and started with chemotherapy in June 2016. My next appointment was scheduled for 12th July 2016, however on the 8th July I received a phone call from the breast clinic to inform me that my appointment had been postponed as there was no chemo stock available for my treatment.

They said I should phone again in August to determine whether they have received stock of the specific treatment.

This was very stressful for me as I realised that I cannot miss one chemo treatment and if I do I have to start all over again. My colleagues at work offered to help me financially to pay for the treatment if we could buy it  privately, and if it could still be administed. This was a dead end as well, and to crown it all the staff at the hospital were very rude to me.

I decided to phone the Pink Drive as I knew that this is not supposed to happen. I was asked to send an email with all the details, which I did and the next moment the emails started pouring into my inbox from ALL the various organisations that started fighting on my behalf.

I sat back and read …. I did not even know that they all exist. I did not even know that this is possible.  That was Friday 8 July. On Monday 11th July I received a personal phone call from the acting CEO of the George Makhuri Hospital, Dr Freddy Kgongwana, to inform me that I must come to the hospital for the scheduled chemo treatment on the 12th July as they have received their stock. I went – and yes I was able to get my treatment on time.

THANK YOU to The PINK DRIVE for initiating this CALL for HELP and to ALL the members of the Advocates for Breast Cancer who got on board and voiced their concern about this.

You really are the “Voice of the Voiceless”. Thank you to the Department of Health for dealing with this matter so speedily – is certainly good to know that we can depend on you in our time of need!

 

Introducing… The Breast Health Foundation

The Breast Health Foundation was launched in 2002 to raise awareness of breast health among women through a series of community based education projects and creating awareness via community health facilities.

The projects currently employ six women, themselves breast cancer survivors, who give talks at churches, places of employment and public clinics about breast health, breast self-examination and the importance of early detection.  Fourteen years on and there has been a noticeable increase in the number of women being diagnosed early.

Over the years the organisation has, through expansion, based itself in the Vaal/Sedibeng area, Cape Town and Durban. The women based in those areas facilitate educational talks, counselling and patient navigation. These educators are also at the regional breast care centres to assist the patients that have been referred and provide counseling if diagnosed.

To date our community educators have directly impacted 72 811 women through community education projects and have made 291 clinic visits. In total, 2913 women have been navigated and 376 diagnosed with various stages of breast cancer throughout all our active areas.

Bosom Buddies (BB) was established as a project of the BHF, a support group for survivors and their family and friends. The group aims to provide emotional and informative support to all individuals diagnosed with breast cancer and is run by survivor volunteers. The ‘buddies’ provide support to people affected by breast cancer at point of diagnosis and during treatment. BB hosts public meetings in Johannesburg every seven (7) weeks and speakers are invited to share knowledge and experiences with the buddies.

Buddies for Life, a bi-monthly lifestyle magazine, is published by Word for Word Media on behalf of the Breast Health Foundation. In sustaining the aims of the Breast Health Foundation. All of the persons involved with Buddies for Life are either medical or healthcare professionals, and they have been affected by breast cancer themselves or have been inspired by a breast cancer survivor. Each issue of Buddies contains a section dedicated to the early detection of breast cancer.

The Breast Health Foundations purpose is to:

  • increase the awareness of breast health;
  • promote education and treatment and
  • provide support in respect of breast health.

Our mission is to

  • create breast health awareness in the community,
  • ensure individual access to information,
  • potentiate access to appropriate healthcare resources,
  • create an ongoing audit of operational effectiveness and
  • offer emotional and informative support.

 And through our projects, we have succesfully managed to realise great results.

You can connect with us on a daily through our social media pages:

:

BHF: https://www.facebook.com/BreastHealthFoundation/

BB: https://www.facebook.com/groups/31260668033/?ref=br_tf

Buddies For Life: https://www.facebook.com/BFLMagazine/?fref=ts

EBC:  https://www.facebook.com/groups/903665216386353/

BHF: @BreastBhf

Buddies For Life: @BFLmagazine

This post was written by R.Vanessa Mthombeni for The Breast Health Foundation

 

 

 

Buddies for life!

bhf circleBuddies For Life is a bi-monthly lifestyle magazine, published by Word for Word Media in association with the Breast Health Foundation, for breast cancer patients, their families and friends. It was launched in June 2011, and 22 issues have been published to date with many more to come.

The glossy print and online magazine aims to educate, encourage and provide support. An array of medical professionals and experts write supportive and educational articles for the magazine on topics such as treatment, health and wellness, diet, fitness, sexuality, new advances and psychological advice that will assist those affected by cancer to understand the disease and treatment.

The content is essential reading written in a style that simplifies terminology. Super Survivor is featured on the cover of every issue and the breast cancer survivor’s story is told. On the Chemo Couch is another platform for survivors to share their unique story.

In keeping with the aims of the Breast Health Foundation, each issue contains a section dedicated to the early detection and awareness of breast cancer.

Oncology Buddies, supported by CANSA, is a new section within the magazine catering for other cancer awareness, early detection and various support groups.

Buddies For Life is available in print at hospitals, private clinics, oncology practises, Buddies for lifemammography units, radiology centres and support groups. Medipost courier the distribution of the print magazines to all the various distribution points.

A digital version is also available on www.buddiesforlife.co.za and yearly subscriptions are offered.

bu

 

The Breast Health Foundation is one of the partner organisations in the Advocates for Breast Cancer (ABC)

Keeping cool in the tough times

Two-Coolers-RecipeIt is hard to imagine feeling hot and bothered in our chilly winter weather, but cancer treatment can play havoc with our normal body temperature.

And even if you are not feeling the heat, you can always do with a fruity vitamin boost!

Two Coolers
When you feel hot and bothered or sore try these to soothe and refresh.

Strawberry and Citrus Sorbet

Fresh juice of 2 big oranges
Fresh juice of 1 pink grapefruit
Fresh juice of 2 tangerines
Zest of 2 organic oranges, finely grated
10ozs (250g,2 cups) fresh strawberries or raspberries, cleaned
5 tablespoons maple syrup

Whizz together in a goblet blender or food processor. Pour into a shallow dish and freeze for 2-3 hours. Break into chunks and process again (using a sharp blade) until smooth and creamy. Return to the freezer for 30 minutes before serving. If you want to leave it longer in the freezer put it into little ice-lolly moulds at the final freeze and get them out as you feel the need.

For a change with added food value, try adding:

4ozs (100g, ½ cup) plain silken tofu
2 tablespoons more of maple syrup
2 teaspoons vanilla essence

Include frozen bananas at the final whizz stage before the second freeze.

Frozen Bananas

The simplest soother ever! Just peel ripe, firm and perfect bananas, wrap them individually in kitchen wrap/film and freeze overnight. Nibble on them whenever you fancy something cool and creamy. Don’t keep them in the freezer for too long, just do a few at a time.

If you can find sugar-free carob drops (try health food shops) melt them like chocolate in a ‘bain-marie’ (double saucepan) and dip your bananas in for an iron fortified, luxurious treat.

THANKS TO DR ROSY DANIEL, WHO HAS GENEROUSLY SHARED THE CANCER LIFELINE RECIPES WITH US. THIS RECIPE IS FOR THE TOUGH TIMES, FOR USE WHEN YOU ARE VERY ILL, DURING TREATMENT, WHILE THE APPETITE IS POOR AND THE WEIGHT LOW.