Life After Cancer

March 1st, 2010

Many people find after their cancer treatment that simply surviving the physical effects of the cancer is not the end of the story. Cancer survivors face many issues, both physical and psychological, after what has often been very intensive treatment. The current focus of follow-up care and surveillance is on detection of cancer recurrence. While this is important and reassuring, cancer survivors often feel they don’t have the opportunity to discuss their range of other concerns.

Last year I attended a presentation on breast cancer survivorship at a workshop in Melbourne given by oncologist Michael Jefford. He outlined the potential issues women may face after breast cancer treatment. While Dr Jefford focused on breast cancer some of these issues are also experienced by people who have had other types of cancer.

These issues include:
• Fear of recurrence
• Ongoing treatment side-effects
• Relationship issues
• Work/financial issues
• Impact on family
• Late and long-term effects of treatment
• Menopause
• Reduced fertility
• Cognitive changes
• Osteoporosis
• Weight gain
• Altered body image
• Sexual issues
• Fatigue
• Distress, anxiety, depression

During his presentation Dr Jefford referred to many resources now available to breast cancer survivors (NB these are open to all cancer survivors). These include the telephone–based peer support service Cancer Connect (available in New Zealand through the Cancer Society for many different cancer types), and online booklets for example, ‘After Your Cancer Treatment: A guide for eating well and being active’ www.cancercouncil.com.au/editorial.asp?pageid=1982 and
‘Life after Cancer’ www.cancervic.org.au/about-cancer/life_after_cancer

He recommended contacting local cancer organisations for information about support programmes. At the Cancer Society Wellington our library includes a section on ‘After Cancer’ containing several excellent books and we produce an After Treatment’ information pack. Our CanSupport programme offers many resources for cancer survivors. Phone 0800 CANCER (226237) for information on any of these services. Other Cancer Society Divisions around New Zealand offer similar services.

He also suggested watching an online 17 minute video on You Tube www.youtube.com (enter ‘cancer survivor lost in transition’ in the search box). This includes interviews with cancer survivors and gives a summary of a pivotal report ‘From Cancer Patient to Cancer Survivor: Lost in Transition’ published in 2006 by the US Institute of Medicine.

An interesting new publication on life after cancer for older adults has recently been published www.nihseniorhealth.gov/lifeaftercancer/toc.html

Julie Holt
Cancer Information Nurse

Coping with cancer over Christmas

December 11th, 2009

 

Celebrating Christmas can be difficult for people who have experienced

a major change or loss in their life.

 

Feelings of loneliness, isolation and sadness are common and Christmas traditions can be painful reminders of how different life has become.

 

Julie Holt and Naena Chhima, Cancer Information Nurses at the Cancer Information Service and Cancer Helpline, said the service receives many distressed calls from people affected by cancer over Christmas and New Year.

 

“This can be a very difficult time for people affected by cancer,

“We speak to patients who are fearful that this may be their last Christmas.

Others may be worried that their feelings and emotions may ruin the

celebrations for others.”

 

Julie and Naena say family and friends finding it difficult to cope with Christmas without a loved one also called the Helpline.

“When people are facing Christmas without a loved one, this can bring forward overwhelming feelings of loss and grief. As experienced cancer nurses, we are here to listen to people’s cancer experiences and share emotional and practical support to help people cope with the feelings of sadness and sorrow.”

 

 

Julie and Naena encourage anyone finding it difficult to cope with cancer to call the Cancer Information Helpline on 0800 CANCER (226237) or email info@cancersoc.org.nz

 

Strategies from others affected by cancer

 

Sharing experiences and coping strategies can help people get through

difficult times. Julie and Naena spoke to patients, family and friends affected by cancer, as well as people coping with the loss of a loved one to find out how they coped with Christmas. Here are some of their suggestions:

 

Set realistic expectations

• Consider online shopping and/or gift vouchers for Christmas presents.

This can save both time and energy.

 

• If you are experiencing financial issues, consider making home-made gift vouchers for things such as babysitting,

gardening, or a picnic.

 

• Booking Christmas lunch or dinner at a restaurant, arranging a picnic at

a local park, or simply asking people to bring a contribution to the

Christmas meal can reduce stress.

 

• If you are having treatment over Christmas, consider having a low key

day on December 25 and plan a celebration at the end of treatment.

 

Express your needs

• Tell others if you are finding it difficult to cope and accept offers of help.

Be specific about things people can do to assist.

 

Be gentle with yourself

• Give yourself permission to get through Christmas the best way you

can. Let people know that you may need to have a rest on the day. Try

to accept any limitations and remember Christmas doesn’t have to be

perfect.

 

• Mood swings and feelings of loss are common over Christmas. Allow

yourself some time to grieve and reflect.

 

• Have an exit plan prepared for times when you may find a family

gathering or party overwhelming.

 

Keep activities simple and non-strenuous

• Fatigue is a common side effect after cancer treatment. Avoid

overwhelming numbers of visitors and long car trips. As energy levels

may fluctuate, sometimes it can be helpful to plan the day’s activities

and then halve them. Allow for rest time during the day.

 

• Keep meals simple. If the person with cancer has had to change their

diet, serve food that can be enjoyed by everyone.

 

Create new rituals

• If your usual Christmas rituals or traditions are too painful, consider

replacing them with a new ritual or tradition that is special to you. For

example, you can light a candle in honour of a special person who has

died and place it with a photo or flowers on the table.

 

Seek support

• Talking to someone about your feelings can reduce feelings of distress

and isolation. Family and friends can be a good source of support.

 

• If you need to talk to someone anonymously, the cancer nurses on our

helpline can listen to your concerns and put you in touch with support

services. Call 0800 CANCER   (226237) to speak to a cancer nurse today. We also recommend that you carry out of hour contacts for your treating doctor and hospital.

 

 

Helpline Support

The Cancer Information Helpline, 0800 CANCER (226237) and email a nurse at info@cancersoc.org.nz, will be available at the following times over Christmas and the New Year:

 

Thursday 24 December: 8.30am-3pm

Friday 25 December: Closed

Monday 28 December: Closed

Tuesday 29 December: 9am- 4pm

Wednesday 30 December: 9am-4pm

Thursday 31 December: 9am-4pm

Friday 1 January: Closed

Monday 4 January 2010 Closed

Tuesday 5 January 2010 – 8.30am- 5pm (back to normal hours)

 

Answering machine messages and emails will be checked on the days we return to the office. To have your call returned, please leave your name and phone number.

 

Our online forum CancerChatNZ www.cancerchatnz.org.nz will be taking a break from Thursday 24 December – 5 January 2010

 

Other support services:

Lifeline (24hr/365 days per year) ph 0800 543354

 

Acknowledgement

This information sheet has been adapted with kind permission of the authors, our Australian colleagues at the Cancer Council Victoria Cancer Helpline www.cancervic.org.au

 

 

December 2009.

 

 

Get Natural for Sore Lips!

November 4th, 2009

Everyday the Cancer Information Nurses get articles and news alerts for all sorts of things to do with cancer – new research, study results, promising new treatments, more risk factors for cancer and so on.

 

As we skim through these articles there is often a ‘gem’ which stands out as being helpful in our practice. A recent article caught my eye firstly for the intriguing title; Sore Lips, a Cinderella Adverse Effect of Chemotherapy, then for the useful information it contained.

 

The article describes a study at a cancer centre in the UK designed to address the lack of good information about what is helpful for sore lips caused by chemotherapy.

 

Sore lips are a common side effect of chemotherapy. The drugs affect the rapidly dividing cells in the vermilion border (the pinky-red area on the outside) of the lips causing dryness, cracking, bleeding, fungal infections and cold sores. People often self-medicate for this using lip balms.

 

The study compared commonly available petroleum-based lip balms with a balm made with only natural products – bees wax, shea butter and natural oils. Although complete data from the study is not available yet, there is enough information from patient interviews to say that natural products give better results.

 

I phoned a local pharmacist who confirmed there are now good natural products available to buy in retail pharmacies. Check with your nurse or doctor – if you have fungal infections or cold sores you will need a different product. Otherwise if you are having chemo we suggest you ask your pharmacist for a non petroleum-based natural lip balm.

 

Julie Holt

Cancer Information Nurse

LYMPHOEDEMA

September 8th, 2009

WHAT IS LYMPHOEDEMA?

Lymphoedema is swelling caused by a build up of lymph fluid in the body tissues especially in the layer of fat under the skin. Normally lymph flows through lymph vessels, but if the lymphatic system is damaged or inadequate it cannot handle the usual amount of lymph, and fluid builds up in the tissues.

Lymphoedema results in swelling of the limbs and may involve the trunk or head as well. Lymphoedema causes swelling in the affected area, discomfort, loss of movement and calls for practical and psychological adjustment.

Prevention is the best approach.

How will I know if I am getting lymphoedema?

Watch out for changes in sensation, feelings of tightness, heaviness or swelling on the side from which the lymph nodes have been removed. You may notice a change in skin colour or feel of the skin. Rings, bracelets, clothing or shoes may feel tighter, pain or tension in the limb. Speak to your doctor. See the Information Sheet ‘Where do I go for help to manage lymphoedema?’

Treatment Options for Lymphoedema and Preventative measures for those at Risk or who have Lymphoedema.
Self Care:
• Wearing a Compression Garment day &/or night is paramount if lymphoedema is present. For those in the public system, garments are funded through the DHB. For those without lymphoedema and needing a prophylactic garment for flying, these can be hired through the Cancer Society.
• Skin care – Daily moisturising to avoid dry skin. Important for preventing infection which can trigger or increase the swelling.
• Daily exercises specific for people with a compromised lymph system – around 20 minutes /day.
• Daily Self-massage approx. 20 minutes/day or alternate with exercise regime.
• Information: contact The Cancer Information Nurse: 0800 226237

Thanks: Naena Chhima: Cancer Information Nurse.

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