The way people deal with the diagnosis of cancer has changed over the years, as has the level of treatment offered. NAN MACKENZIE meets a nurse at the frontline of dealing with cancer patients
How many cancer patients does it take to change a light bulb?
Just one, but it takes a support group to cheer him/her on.
The other answer could be: None because, they are all too weak to climb the ladder. Okay, having cancer isn’t funny; it is a mean and ugly thief that robs people of time, health, hope and hair, among other things. For those diagnosed it is a minimum of a year for surgery, chemotherapy, radiotherapy and possibly other ongoing drug therapies before it is possible to get back into mainstream life. For others, it is trying to find the art of living as fully as one can while dying.
Cancer patients also have to put up with the misguided and outdated use of words such as fighting, hero, battle and other combative military clichés that lazy journalists use when writing about the disease. In addition, a diagnosis has a huge emotional impact on friends and family, who for the best of reasons will test the patient’s resolve to cope with the constant pressure of being asked ‘how one is feeling’?
Here, the temptation is to respond: ‘How do you think? I have f…..g cancer, no boobs, no hair or eyebrows, serious constipation, burnt flesh, zero energy levels, disappearing taste-buds, and a dire need to reach out and press down hard on the carotid artery of the next person who asks the question.’
The vast majority of people will be utterly crushed and overwhelmed by a diagnosis and feel a bit of a failure when they don’t see themselves as one of those more positive BRAVE souls who wouldn’t succumb to it all. The best advice here is forget the warrior cancer clans and be yourself, rant all you want, but do seek practical help.
So, who do you call when your life has been turned upsidedown and you are living the narrow and somewhat lonely life of a cancer patient? The answer here in Cyprus is to make instant contact with the marvellous and highly professional PASYKAF (The Cyprus Association of Cancer Patients & Friends) homecare service.
This registered charity supports all cancer patients from the age of 18 and has proven for many to be a genuine oasis in times of despair, frustration, pain and confusion. The 20 home care nurses islandwide are a dedicated team who see people from diagnosis through their treatments, and in cases where the patient has no other options left, they will always be there for them.
Rachael Grainger Christou is a British registered nurse from Yorkshire who fell in love both with the island and a Cypriot, settling here to raise her two sons. She is a trained home care nurse and works from the Paphos clinic set up in 1995.
Twenty years ago one of the biggest problems facing the team was the dominance of ignorance and fear; the very word cancer was rarely uttered with people referring to it only as ‘the far away disease’.
“One of my first patients was an elderly lady whose family had removed her from the family home to a shed at the bottom of the garden to keep her away from the family in case they also ‘caught the disease’,” says Rachael.
“Another family had been washing down their elderly father with strong disinfectant on a daily basis to ward off any perceived ‘cross infection’ of his cancer.
“When we visited outlying villages the family would always ask us to walk to the house, never to park our PASYKAF car outside a patient’s home as they didn’t want anyone to know a there was cancer in it.”
There was, Rachael added, “always the request to keep from a family member the true nature of the illness, so children would request we never tell a parent what they were suffering from. Mercifully that has in the main stopped but doctors here also used to be party to this practice of keeping the patient in the dark regarding their diagnosis at the vigorous insistence of the family.”
But the worst part of her job now, though Rachael insists on using the word difficult instead, is caring for those who were alone with no family support. “This can be a difficult situation for the patient and sad for the team as we deal with growing numbers of those whose circumstances have led to them being utterly isolated by the disease due to zero family and few if any friends.
“I had a lady whose husband had died years earlier, we discovered her only once she was critically ill and alone. Her home was so filthy and her pet dogs so hungry they were consuming her faeces, which literally covered the floor. We were able to clean everything, get her dogs cared for and made her comfortable, but also offered much needed communication on a daily basis until the day she died, which she did with as much dignity as we could provide for her.”
When a patient reaches the final stage, the PASYKAF nurses make every effort possible to offer them a death with dignity in their own home, “not in a sterile hospital bed”. They also empower and educate carers so they can give the assistance and support required when the nurses aren’t there, such as medication regimes, how to wash and change the person, how to use oxygen etc. “In other words we try to create a hospice at home, where the patient is in familiar surroundings with the people they care about and their pets, where they have their pride intact and privacy to then concentrate on their quality of life with the very best symptom control available”.
The charity is now trying to raise funds to create a 24-hour 365 days a year permanent care system islandwide so patients and carers never need to feel isolated as there will always be someone they know who will answer a call for assistance/advice at any hour of the day or night. To date the help line is only open during normal working hours.
Another vital service the charity offers patients is a free daily bus service from Paphos, also collecting patients en-route from Limassol (another operates from Larnaca) to deliver patients to the Bank of Cyprus Oncology Centre in Nicosia, where they receive radiation treatment. Many patients will require this service for weeks and even months, and there is no question that it has been and continues to be a literal life saver. The funds for this service too are continuously raised via the industrious and dedicated local volunteers who work tirelessly to keep not only the nurses but also these buses on the road.
When someone has cancer the sheer effort of trying to navigate the hospital systems can be quite overwhelming, from the interminable queuing for registration, to understanding the different procedures necessary to gain access to various specific tests/examinations etc. Again, this is where the charity comes to the rescue as patients can pop down to the clinic where Rachael and her colleagues can take blood samples, send them off for analysis and patients can then return to collect the paperwork all without the stress of having to visit hospital.
In Paphos there is usually a PASYKAF volunteer in attendance at the oncologist’s clinics at the hospital, along with refreshments and advice on what the charity can offer. The homecare nurses are here too and it’s where they can pick up people who up until then may have had little or no support and offer them both reassurance and practical solutions.
The homecare nurses within the Paphos region cover Peyia to Pano Pyrgos, Kouklia to Salaminou and visits cover everything from helping with wound care to careful management of pain control, and of course taking time to talk to patients. The clinic also has a dedicated psychologist, social worker and physiotherapist on call in addition to a store room filled with essential equipment that allows the patient to stay at home and in comfort including wheelchairs, commodes, hospital beds with monkey pulls, back rests, nebulisers.
Hard as it is for patients, dealing with them on a daily basis must surely take a toll on the nurses. How do Rachael and her colleagues manage to deal with the fact that patients who they have come to know well die on their watch? “I did have a bit of a burn out several years ago and took time out from the job, but I have learnt how to deal with things better,” says Rachael. “I do love my job with a passion, one has to, and I find it an enormous privilege to be able to help people to get back on their feet and also for those who need our assistance when it comes to end of life care. We are always guests in other people’s homes and are now warmly welcomed by the families as they also need our support and advice, which these days is embraced fully.
“I do sometimes look back and think of all the people who could have been helped by today’s modern treatment regimes. Things have moved on at such a pace we can no longer look at the C word as an automatic death sentence, we have some fine oncologists and Cyprus boasts a good treatment service so things continue to get better and patients are living longer and better and, importantly, living fuller lives which for us is always great news.
“Yes, we do always need funds, we do need more volunteers, and we do need more knowledge to be put out there about our work so patients know where to come to get support and practical help.
“The other thing to remember is that cancer is a very lonely disease with many patients worrying about a recurrence, but we believe that with our help that fear can be controlled and managed because fear will always impact negatively on a person’s life and work to take away any joy they may have, no matter what the circumstances.
“I like the word joy. It’s only three letters but it’s a word that we need to use more often in life and I believe firmly that the work the home care nursing team does on a daily basis always brings an element of joy, and that is really what life should be about, always looking for joy no matter what”.
PASYKAF BY NUMBERS
Islandwide PASYKAF cared for 5,000 patients and families during 2014
Cyprus deals with 3,500 newly diagnosed cancer patients every year and 20,000 patients are currently on the ministry of health register as cancer patients
1,200 patients die annually from cancer in Cyprus.
In 2014 the home care nurses cared for 2,000 patients and made 20,000 visits island wide.
The cost of doing so was €2.2 million
www.paskaf.org, Nicosia 22 345444, Limassol 25 747750, Larnaca 24 665198, Paphos 26 222929