As Cancer Connect is a Cancer Society service that slots in well alongside Cancer Chat the two facilitating nurses from Cancer Chat have asked me to jot down a bit about the service. So here goes.

Cancer Connect is a peer support service for people who have a primary cancer diagnosis and their care givers. Cancer Connect is a one-on-one phone service; it is anonymous, first name only. Cancer Connect is free and offers a listening ear, practical information, and the opportunity to talk to someone whose life has been affected by cancer.

Each of the Cancer Connect peer supporters has had cancer, or cared for a loved one living with cancer.

Cancer Connect can be accessed through your local Cancer Society or by phoning the Cancer Information Helpline 0800 226 237 

The service has been operating in NZ for about the past six years, we operate this service in conjunction with the Australian Cancer Councils so if we don’t have a suitable match we can look for a volunteer across the Tasman and they can do the same in reverse.

Cancer Connect volunteers are all a couple of years past their own cancer experience and happy to share and support others. Often the volunteers offer their services because they have had a connect themselves and found it helpful. Cancer Connect volunteers do a two day training and attend an annual update day.

We currently have about 70 volunteers in NZ with access to the Australian team which is probably another 400-500 volunteers.

The sorts of things that are discussed are treatment options, so often someone who has a choice of treatment will call and wish to talk with maybe two volunteers who have chosen different types of treatment. Emotions, treatment side effects, partner/family issues, financial issues, survivorship, sexuality, diet/nutrition, children’s responses, self esteem, the list of things that get talked about is endless. The volunteers are able to understand and hear the problems even though they may not have the answer, that understanding of having been in a similar position is the bit that makes this such a special service.

We cannot always get the perfect match. We try to match as well as we can with age, gender, disease type or treatment type, but we cannot always get for example, the same cell type, actual drug or surgery. Sometimes this just too difficult, but from experience it seems that even a less than perfect match can often provide a useful and supportive contact.

If the service sounds like something that would be useful to you please contact us (ph 0800 CANCER 226 237 or info@cancersoc.org.nz) and have a talk.

Meg, Cancer Information Nurse and Cancer Connect NZ coordinator, Cancer Society, Christchurch.

 

We’d like to let you know about an exciting week ahead in the Wellington, Wairarapa and Nelson area.

Each year the Cancer Society, Wellington Division has a week of events called Cancer Update. This year the focus is Cancers of the Mouth, Nose and Throat (Head and Neck cancers).   There is a free  public lecture with our invited guest Dr David Dalley, Director  of Medical Oncology at St Vincents Hospital, Sydney,   Heads and Tales - the heads-up on cancers of the mouth, nose and throat. This will be held as follows:

• Tuesday 15 June 7.30pm - 8.30pm at Fairfield House, Nelson,
• Thursday 17 June, 12.30pm- 1.30pm at the Masterton Town Hall
• Thursday 17 June 6pm - 7.30pm at the Spectrum Theatre, BP House, cnr Customhouse Quay and Johnston St, Wellington.

All welcome.

 The following story by Brian Sheppard from Wellington sets the scene for the week. Brian is a volunteer for the Cancer Society’s Cancer Connect service.

Tongue cancer

 

I had bitten the side of my tongue.  No big deal but after a couple of weeks when it hadn’t healed, I thought I should get it checked out.  My dentist spotted its significance and set the ball rolling for treatment.  That was nearly six years ago and life has returned to normal, thanks to my dentist; the medical team who did such a great job with surgery, reconstruction, nursing and radiotherapy. My family, friends and employer were all there too, to support me on the road to normality.

 

I also learned a lot my tongue:  its role in positioning food for chewing and swallowing, even crushing food against the roof of the mouth.  I learned that saliva, which is damaged by the radiotherapy, was very helpful in chewing such widely different foods as salad greens, some ‘meaty’ fish and some lean meat – but that potato is a great help when eating them, in conjunction with a drink of water.

 

I also learned that saliva has a great cleaning effect.  My electric toothbrush head grew a slime worthy of the best sci fi film and now needs to be stored in a weak solution of mouthwash.

 

Like so many people who face one of life’s bigger challenges, this experience reinforced the need to value what is and who are really important, and not to let opportunities pass me by.

 

I know that mine is one of the good news stories.  Others will be even better and some much worse but I have recently had the opportunity to gain another perspective.  I had the privilege to meet and work with Joel, who lost his entire tongue to cancer.  He may have lost his tongue but certainly not his spirit.  His only concession to his difficulty was to eat his liquefied food in his room.  In every other way, he was a very active participant, and presenter, at large international workshop that we were running.

 

I may, from time to time, feel self conscious about the difficulty of getting my tongue around some combinations of vowels and consonants, and of choking when I try to talk and eat at the same time but – so what!  It is really much more noticeable to me that to others and, if Joel can do it, so can I.

 

 

 

Read the rest of this entry »

Taste changes with chemotherapy and radiation treatment

As many of you will know, several cancer treatments (some chemotherapy drugs or radiation to your mouth, nose or throat) can make your food taste strange. Many people find they have a metallic taste and food may taste bitter or salty. Some people find their food all tastes the same.

Usually your sense of taste begins to come back to normal within a few weeks of finishing chemotherapy. Radiation treatment can cause a loss of taste for longer. The taste buds need time to recover from radiation damage. This usually improves slowly although it can take many months or longer for your sense of taste to return. If you have had any treatment that affects your sense of smell, this will also affect your sense of taste.

Tips for coping with taste changes

• If all your food tastes the same, try foods that have strong flavours such as salamis, olives, anchovies, smoked foods, strong cheeses, curries.
• Try adding garlic, lemon juice, herbs and spices to food. However it’s best to avoid spicy foods if you have a sore mouth, mouth ulcers or thrush.
• Make a marinade with a couple of tablespoons of olive oil, and some herbs or spices - add some lemon juice or soy sauce if you like. Marinate food overnight if you can.
• A dry mixture of spices and herbs can be rubbed onto uncooked meat or fish to add flavour.
• Gravies and sauces can help to add flavour to your meals. This will also moisten your food. People often find their mouth feels very dry when having treatment.
• Sugar-free sweets or chewing gum may help reduce a bad taste in your mouth.
• Avoid foods that taste strange to you, but try them again every few weeks as your taste may have improved
• You may find you associate certain foods or drinks with treatment. You may prefer to avoid your favourite foods until you’ve finished your course of treatment so you don’t go off them for good.
• Many people say they can’t stand the smell of food preparation or cooking. Grilling rather than frying food may help. Try cooking on an outdoor BBQ. Cold or room-temperature foods also have less of an aroma.
• Family or friends may offer to cook food which you can freeze in portion sizes to defrost and heat in your microwave.
• Try using plastic utensils and glass cookware to lessen a metallic taste.
• Good mouth care is always important when you are having cancer treatment – follow advice of your cancer doctor and nurses and see the Information sheet ‘Coping with sore mouth, dry mouth and mouth infections’ at www.cancernz.org.nz
•  For more ideas talk to your cancer nurse or dietitian. The Cancer Society booklets Eating Well and Got Water? – a guide for people with a dry mouth also have useful information.

 

Julie Holt

Cancer Information Nurse

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

 

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.

 

 

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

 

 For parents diagnosed with cancer one of the first concerns is how and what to tell the kids. Read the rest of this entry »

1 July 2009

At the end of this blog you will have read about the range of events we’ve just had in  Wellington, Nelson, Blenheim and  Masterton about bowel cancer with our wonderful guest speaker Dr Andrew Luck from Adelaide. Read the rest of this entry »