Continuing care, long after the cancer has gone

Cancer is no longer a death sentence and as a significantly greater number of people live with the disease, the needs of the population have changed.

For many patients, issues around living and coping with the medium to long-term effects of cancer and its treatment do not arise for two to four years post-treatment.

Dr Helen Greally, director of psychology and support services at Cancer Care West, points out that traditionally, psychological support was seen as most crucial at the time of diagnosis and this led to psycho-oncology services being based in hospitals where cancer treatments were delivered.

“Psycho-oncology is the treatment of psychological distress caused by cancer in the patient, their relatives or carers.

"Cancer Care West is developing a model of community psycho-oncology that aims to marry traditional support services, which can be found in many smaller centres with the provision of professional psycho-oncology services found only in bigger hospitals," she explains.

25,000 visits
The Cancer Care West Support Centre, located a five-minute walk from Galway University Hospital, opened its doors in May 2009.

Since then, the centre has been visited more than 25,000 times by over 4,000 people – patients and their families – affected by cancer.

The centre offers psychological support through clinical and counselling psychologists, as well as oncology nursing, benefits advice and a range of support groups and classes including yoga, writing, art and t’ai chi – all under the one roof and all free of charge.

Two years post-treatment is the most common time for referral to a psycho-oncology service and the most common reason is depression.

However, people at all stages of their illness use the services at Cancer Care West from the newly diagnosed to one woman who is 22 years post-treatment.

Total contrast
Walking into the light-filled, open plan drop-in centre in Galway is like going into a bright, welcoming home – a total contrast to the clinical hospital setting.

Visitors can sit at the long wooden table in the kitchen/dining area and have a cup of tea and a chat or relax in an armchair in the lending library area and choose from the large selection of cancer-related reading material.

It is a quiet peaceful space with an indoor garden and beautiful artwork on the walls.

“Coming in here is a big step for people, but we would love to have more people using our services,” Greally says.

“We are open to anybody. Whether they are one year or 20 years post-treatment or are a relative or carer who has been affected by cancer, it makes no difference.

“One of the myths around cancer is that when the treatment is over, you are better.

“Thankfully, a lot of people cope well with cancer and make a good recovery, but we help people to live with the uncertainty of a cancer diagnosis and the impact this has on their lives.”

The most difficult part of living with cancer, Greally adds, is the fear of recurrence.

Recurrence
For many people, it does not recur, she says, but the only thing that would ease this fear is an absolute guarantee from the medics that it will not recur which nobody can ever give.

“We use interventions like mindfulness to try to get people to live in the present moment, to focus on how they are today and to stop them going into the future. We try to get them to connect their body and mind in the present.

“Through cognitive behavioural therapy, we get people to stand up and face their cancer instead of trying to avoid it as this only increases their anxiety.”

All of the services at the Cancer Care West Centre are free of charge and exist entirely on donations.

Cancer Care West also runs the 33-bed Inis Aoibhinn support lodge in the grounds of University Hospital Galway, where patients can stay while receiving radiotherapy.

To find out more about Cancer Care West’s services, call 091-540040, go to cancercarewest.ie or call into the support centre at 72 Seamus Quirke Road, Galway.

Case study: “It’s not all doom and gloom . . . we have great fun”

Kathleen Treacy was born with an 85 per cent risk of developing ovarian cancer and a 65 per cent risk of breast cancer due to an inherited gene.

She remained blissfully unaware of this until she was in her 50s, when she was diagnosed with four different cancers one after the other.

One day in June 2007 at the age of 50, Kathleen left work with stomach pain and she has not been back since.

“Prior to that day I had been having little bits of pain, nothing that would stop you in your tracks, but I was busy with life and work so did not take much notice. That evening, the pain became unbearable and I ended up in hospital having surgery for ovarian cancer. I had my ovaries, womb and cervix removed.

“It was a very severe operation that took me a long time to recover from and six weeks later, I had to start a heavy dose of chemotherapy. I was so sick I could hardly walk.”

This was only the start of a devastating battle with cancer for the mother-of-two from Newcastle in Galway city.

Almost a year later, as her hair was growing back, she was diagnosed with breast cancer and had to undergo surgery, radiotherapy and the loss of her hair for a second time.

The following year as she was slowly recovering from treatment, her consultant found some cancer on the periphery of her lung which he was able to treat with chemotherapy and radiotherapy. And just as she was ready to leave hospital after this treatment, her consultant had to break the bad news that she had cancer in her brain.

This time the radiotherapy was more severe and she was warned that her hair might not grow back or might grow back in patches.

“I had coped fairly well with everything until then but I was very upset about that. The treatment for the brain cancer was very severe. They made a cage to screw over my head and after the radiotherapy, I was taken on my wheelchair up to the ward and literally rolled into bed. I was in another world.”

To add to the trauma of the situation, Kathleen was unable to see her daughter – who had just started her Junior Cert – for five weeks because she was so ill.

The side effects of so much treatment had started to take its toll and it took her a long time to recover. She lost her ability to walk, the nerve endings in her hands and feet were affected, she lost teeth, her gums were damaged and she suffered with neuralgia in her jaw.

“I don’t really how I got through it,” she says. “I have a very good family. My husband was excellent. He literally had to carry me everywhere, feed, wash and dress me. My son and daughter, even though they were very distressed, were also a great support.

"My faith helped me through and I have lots of friends in Galway – the whole place was praying for me."

Life really began to change for the better for Kathleen when she started going to the Cancer Care West Support Centre when it opened in 2009. She still goes twice a week to the keep-fit classes and has made some good friends there.

“You can just go in and sit in the library and read or have a cup of tea and look out the window,” she says.

“You can stay as long as you like. It’s lovely there and they are all so kind. I started off with yoga as it is very gentle and I had massage, reflexology and did a mindfulness course.

“There are so many different things going on and it’s not all doom and gloom or talk about treatment and recovery, we have great fun. They do wonderful work there, you couldn’t put a price on it.”

After her third cancer diagnosis, Kathleen’s consultant had recommended that she have genetic testing as it was so unusual to have one cancer after another so quickly.

The tests were able to show that she had inherited a cancer gene from her late father – who never had cancer – which put her at a very high risk of developing the disease. Her own children – who have a 50 per cent risk of inheriting the gene from her – have yet to be tested.

“I am three years cancer-free now and I am getting on with life. As my consultant has told me, the cancer may never come back again or it could come back in the morning, nobody knows. All they can do is keep a close eye on me.

“I’ve met lots of lovely people along the way with different cancers, some of whom did not make it, so I can’t complain.”