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 normal?

qLet’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

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.

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

The DITTO project

ditto

The Ditto project is an initiative run by Reach for Recovery to provide indigent women access to a silicone prosthesis which helps to restore her self-image and confidence after the traumatic breast cancer diagnosis and surgery.

Surgery after a breast cancer diagnosis may involve part or all of a breast being removed (mastectomy). Having a mastectomy leads to a tier of decision making regarding whether to have surgical reconstruction, wear an external breast prosthesis, or not wear anything at all to replace the amputated breast.  External breast prosthesis may be the best option a woman has, especially if she cannot afford to undergo reconstructive surgery.  However, not all patients can afford the cost of a permanent prosthesis.

Reach for Recovery believes that all women who have had breast cancer surgery should have access to appropriate breast prostheses, regardless of whether they can pay for it or not. The reality is that many breast cancer patients in South Africa cannot even afford a bra, let alone a breast prosthesis. Reach for Recovery wants to help these women who come from low income groups to feel confident again after the traumatic diagnoses and surgery.  We believe that a breast prosthesis is an important step in her recovery, especially to those women from communities where a there is still a stigma attached to a cancer diagnoses.  A more natural appearance with a breast prosthesis, together with the emotional support that she can continue to receive from Reach for Recovery volunteers through support groups, will help her to return to her place of employment and continue to provide for her family.

Any breast cancer patient who can present a current Provincial Hospital Card qualifies for access to subsidised silicone prosthesis.  The patient is asked to make a donation of R80 towards the project (R160 in case of a bilateral).   However, no patient has ever been turned away because she could not afford to make a donation.  The prosthesis may be replaced after three years.

Unfortunately Reach for Recovery cannot provide the paying customer with an invoice to claim back from their medical aid as we do not have a Medical Practice Number.  However, we do offer as much support as possible in terms of general information on local and international manufacturers, suppliers etc.

The Ditto Project started in 2011.  Since then, a total of 3235 silicone prostheses costing more than R2 million were given to women who could not afford one.  Many women donated a small amount (R80) as a token of their gratitude, but we also supported women who could not afford any donation at all.

Apart from state patients, a growing number of women only have a Hospital Plan which does not cover breast prostheses. Pensioners are particularly hard hit.

We have also seen a steady increase in the number of women needing silicone prostheses since 2011:  from 475 in 2011 to 930 in 2015.  There is without doubt a growing need for this service.   Unfortunately a silicone prosthesis is guaranteed to last for only two years; therefore we are also experiencing women returning to Reach for Recovery to have their prostheses replaced.

The need for silicone prostheses for newly referred breast cancer patients plus the need for replacements impacts heavily on the funds that we use to subsidise these products. A needs analysis has shown that we would subsidise at least 1000 women with a new silicon breast prosthesis in the new financial year.  This includes women who would need a replacement.

We are extremely thankful to our donors who help us to ensure the sustainability of this project!

Reach to Recovery is one of the breast cancer organisations that is a part of ABC.

 

Reach for Recovery Logo (2)

Staying fit, feeling good

Do daily exercises

After a mastectomy or if you have surgery to your armpit, your surgeon and physiotherapist will ask you to do regular exercises to help you recover. Your arm may feel stiff on the side where your breast was removed. Simple arm exercises can help to

  • give you back your full range of movement (also important for radiotherapy treatment)
  • relieve pain and stiffness
  • reduce swelling

After surgery, do the exercises until you have full movement back in your arm and shoulder. Ideally, you should do these twice a day.

To start with, the exercises are quite gentle. The aim is to get your arm and shoulder moving as it was before the surgery. You can begin each session by circling your shoulders, to get the muscles moving. Other early exercises are brushing or combing your hair, putting your arms behind your back and touching your shoulder with your hand. As you get stronger and more confident, you can do more of the exercises and gradually increase the range of movements.

Have a look at this excellent video:

https://www.youtube.com/watch?v=vo1S-K2MetM

Talk to your surgeon or physiotherapist if you have ongoing problems with arm or shoulder pain, stiffness or swelling.

If you have had breast reconstruction surgery the exercises you do are different and depend upon the type of reconstruction you have had. Check with your surgeon and physiotherapist!

Stay physically active

Tiredness and weakness is finally being recognised as one of the most common side effects from cancer treatment. It’s called: Cancer Related Fatigue. The reasons for it are multifold: the cancer itself drains your energy, the treatment is intense and often toxic, but also the lack of normal physical activity during treatment leads to loss of fitness.

It is encouraging that taking regular exercise can help to combat it. More and more research is showing that exercise during and after treatment is safe and helps recovery after cancer. Regular exercise can reduce stress and give you more energy.

 

But how much, and how often, and what exercise is suitable for me?

To be beneficial, exercise should be 30 minutes a day, 5 days a week, of moderate intense activity such as walking, cycling or dancing. You should get warm and increase your heartbeat without getting out of breath. This level of activity is helpful for people even during treatment.

30mins

Everyone is different and exercise needs to be tailored to individual people, taking into account your diagnosis and treatment (weightlifting shortly after breast surgery), other problems (diabetes, cancer in the bones) and not least: what you love to do and feel is possible in terms of time, travel and costs! A physiotherapist or biokineticist can help you on your way.

Have a look at the pyramid and see what daily exercise you can easily incorporate in your life.

pyramid

Exercise can also be helpful in a number of cancer related side effects:

  • neuropathy (pins and needles, problems with balance): aerobic exercise helps with the recovery of the damaged nerve ends by increasing blood flow.
  • osteoporosis (thinning of the bones): weight bearing exercise means running or rowing or anything where your bones are doing some work. This type of exercise may protect you against osteoporosis (thinning of the bones). Osteoporosis is a concern for many post menopausal women who have had hormone dependent cancers and so cannot take hormone replacement therapy.
  • depression/anxiety: many women with breast cancer battle with depression; regular exercise, possibly in a group, leads to less anxiety and need for medication.

Keep your pace

A very important advise to women fighting cancer is to listen to your body. But how can you do that, juggling a family, doctor’s appointments, medication, work obligations and loosing a breast at the same time?

This great advice was shared with us by the fabulous physiotherapist Liesbeth Raymakers

 

Keeping the balance

Over the next couple of weeks, we will be posting a series of recipies that will help you as you go through treatment. The Cancer Lifeline recipies are divided into three phases:

  • Tough Times, for use when you are very ill, during treatment, while the appetite is poor and the weight low.
  • Clean Machine, for detoxification of the body, post cancer treatment, or to kickstart a holistic health creation programme.
  • Eat Right, to set the right style of eating for the rest of your life to generate optimum health.

The recipies have been created by celebrity chef and nutrition consultant, Jane Sen, for the nourishment and healing of people with cancer. The recipies are part of the Cancer Lifeline Kit by Dr Rosy Daniel, which she has generously shared with us.

balance

Those dreaded side effects!

sideeffects

The chemotherapy drugs cannot distinguish between cancer cells and normal cells of the body and will attack other rapidly growing cells such as hair,skin, nails, lining of the digestive system and bone marrow (blood cell lines).

Therefore there are various side effects associated with the therapy and  because each drug acts in a slightly different way, the side effects will also differ between different drugs.

Thankfully, like all drugs (including Panado and Aspirin), not every side effect is experienced by every person, and some side effects are experienced to lesser degrees in some people.

Many side effects may be unpleasant, but are not harmful. Some side effects may get worse and some may get better with each cycle of treatment. Others may develop during the course of the treatment.

Some side effects need to be treated and some can be managed by anticipating them and controlling them in advance which lessens their effect.

Some side effects are more serious and it is important to contact your doctor if you are worried.

The good news is that cancer cells divide more rapidly than normal cells and are therefore more likely to be killed by chemotherapy.

More good news is that normal cells are also more able to recover than cancer cells and therefore most side effects are not permanent and will reverse once the treatment is finished.

Blood cell counts are done each time a new cycle of chemotherapy is started. This is usually done the day before the next treatment or very early on the same morning of the treatment. Sometimes a blood test will be done mid-cycle depending on the patient or the combination of drugs used.

The most common side effects and some of the agents that cause them:

Nausea/Vomiting (FEC, AC> CMF, Xeloda)

Drugs that help prevent against nausea are given before the combinations that cause this. Medication is also given to take home for a few days after treatment too. Different drugs work for different people and it may be necessary to try more than one antiemetic before you get relief.  It is important not to give up – if the prescribed antiemetic is not effective, work with your doctor and nurse to find the one that works best for you.

Diarrhoea/ Constipation (all, but especially Xeloda, Vinorelbine)

The irritation of the lining of the bowel may lead to diarrhoea. This can often be managed with dietry changes but may require medication. Drinking lots of fluids is important to help replace losses.

Chemotherapy may cause some people to become constipated.  Others may become constipated because they are less active than before, because of diet changes, or from pain medication they may be taking.

Mouth sores and ulcers (all)

The cells lining the mouth may be affected and the mouth may be sensitive or develop small ulcers. Sometimes changes or loss of taste can occur which recovers once treatment is completed.

Lower blood cell counts (FEC,AC, CMF, Gemcitabine,Vinorelbine,)

This occurs because the chemotherapy drugs affect the bone marrow. The bone marrow makes white blood cells, red blood cells and platelets. The levels of these blood cell counts are checked regularly during treatment.

Low white cell counts (FEC, AC, CMF)– white blood cells help fight infection. If you have a severe infection and your white cell count is very low, it could be life threatening and may require hospitilisation. It is important to contact your treating doctor if your temperature goes above 38degC.

Low red cell counts (FEC,AC, CMF,Taxol, Gemcitabine)– red blood cells carry oxygen to the cells. If the count goes down you may become anaemic which will result in you feeling tired and breathless. If severe, you may need a blood transfusion.

Low platelets (Gemcitabine)– platelets help blood to clot. If the count goes down you may bruise easily.

Tiredness/Fatigue (all)

Fatigue is a common side-effect of chemotherapy and can range from mild lethargy to feeling completely wiped out.  It is not always due to a low red cell count (anaemia). It can be a deep tiredness that does not get better from sleep and tends to be worse at the beginning and end of a treatment cycle but may persist for 6 months to a year after treatment.

Hair loss (FEC,AC) Hair thinning (CMF,Taxol, Vinorelbine)

Some chemotherapy combinations (such as AC, FEC, CAF) make all hair fall out both on the head and the rest of the body.

Other combinations cause some hair to fall out so the hair thins out.

This can be upsetting but it is temporary- the hair will begin to grow back a few weeks after treatment has stopped. It may grow back different in colour or texture though.

Skin and nail changes (Taxol, Xeloda, Vinorelbine)

Skin may become dry and sensitive to sunlight and some drugs even cause rashes. Nails may also become brittle or discoloured.

Hand-foot  Syndrome (Xeloda)

The earliest symptoms of Hand-foot Syndrome is a painful sensitivity of the hands and feet. It may progress from sensitivity to redness and swelling on the palms of the hands and soles of the feet.  The redness looks like sunburn and it may blister and in severe cases form sores.  The affected skin can also become dry and peel.  It is important to advise your doctor or nurse about any Hand-foot Syndrome symptoms, even if they are mild, as treating early can help prevent severe cases.

Eye problems (all)

Sore eyes, “gritty” eyes, watery eyes, infection in eyes(conjunctivitis), and blurred vision may occur in some people to varying degrees during their treatment.

Phlebitis (FEC, AC, CMF, Vinorelbine,)

Damage to the lining of the veins used in some chemotherapies can result in discomfort or burning sensation in the veins. This may last for some weeks. If venous access is difficult a port (a cannula inserted under a general anaesthetic)into a large vein in the chest) may be advised. If the vein is burning or painful during chemotherapy, please alert the chemotherapy sister.

Peripheral neuropathy (Taxol, Vinorelbine)

This is experienced as a numbness or tingling sensation in fingers or toes. In more severe cases it may be painful. It is most commonly seen in diabetics and in those who have had multiple courses as it tends to be cumulative. It may persist for a few months after completing treatment.

Allergic reactions (Taxol)

If this occurs, it usually happens with the first dose. If it occurs it will happen in the chemo room and not later at home. It is usually prevented by and easily treated with antihistamines and steroids.

Liver changes (Gemcitabine, Vinorelbine,Xeloda)

In many cases this is only noticed on the blood tests and goes unnoticed by the patient. It will go back to normal after treatment. In the cases of breast cancer that has already spread to the liver, the liver function may be affected by the cancer itself and may actually improve on chemotherapy.

Menstrual irregularity and infertility (all)

When women receive chemotherapy it can damage the ovaries and reduce the amount of hormones they produce, resulting in short-or long-term infertility (inability to fall pregnant).  The effects of ‘chemo’ on your hormones may result in:

♦          Menstrual periods becoming irregular or stopping completely

♦          Menopause-like symptoms, e.g. hot flushes and itching burning, or dryness

of vaginal tissues

♦          Vaginal infections are more likely

Menstrual function can start again up to 2 years after chemotherapy. The onset of menopause may also be brought earlier and fertility may be impaired. If a woman may want a baby after chemotherapy, it is a good idea to discuss this with the doctor before starting chemotherapy.

Remember that, chemotherapy is not a safe method of contraception and a safe contraceptive is very important during chemotherapy as the drugs would be extremely harmful to the foetus.

Cardiac failure (FEC, AC, CAF, Xeloda)

In very rare instances some chemotherapy can lead to heart failure. If your doctor thinks you are at risk a cardiac function test will be done before starting chemotherapy.

There are many other possible side effects of chemotherapy, many of which are extremely rare or mild and therefore not covered here but can be discussed individually with your doctor if you have concerns.

Frequently asked Questions:

“So just how bad am I going to feel?”

This is impossible to predict.  Everybody is different.  Many people can continue working during chemo, but may find they need to take a day or 2 off after chemo before going back to work.  Remember your experience will be different from the lady sitting next to you in the chemo room, so don’t panic if you find you are having a harder time than she (or an easier time!).  Tell your doctor.  Often something can be done to make the next time better.  Some things  you may have to grin and bear.

“What about other medicines, drugs and supplements during chemotherapy?”

It is important to discuss this with your specialist any other drugs your are taking or additional drugs you would like to take.  This includes vitamins or dietary supplements, vaccines or immunizations, immune boosters and herbal medicines.  They may interfere with the effectivity of your chemotherapy treatment.  Whatever boosts you may boost your cancer cells too!!

Blog written by Ronelle Lovric http://www.capebreastcare.org