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Supporting terminally ill patients & those who care for them

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quote.gif Compliments feel insufficient to express the gratitude felt for the Hospice staff who attended my wife, Bridget Thompson, for the last two-and-a-half months of her life.
Bill Thompson, Warkworth

Patient Stories

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Aubrey's story

Aubrey Symons is a plain-spoken Welshman who enjoyed perfect health for 67 years until a routine check-up changed everything.
Aubrey and his wife Kate were called to the doctor’s office the day after the check-up to hear the news that Aubrey had cancer in his bladder. That was three years ago and although he can joke about some of the procedures he faced, Aubrey admits the shock will probably never wear off.
“Even having my finger in a splint is major for a Welshman like me,” he says.
The treatments put Aubrey in remission for some time, but the tumour eventually reappeared and when chemo and radiotherapy stopped having the desired effect, he received another shock. His oncologist told him she was referring him to hospice.
“That was as much a shock to the system as being told in the first instance that I had a terminal variety of cancer.”
Aubrey says he associated the services of hospice with the process of dying but he now realises he could have done with hospice support even earlier – particularly for information about possible side-effects such as lymphedema.
“You don’t get told enough about the side effects and consequences of the cancer you have got. I’ve got this thing called lymphedema; my left leg is twice the size of my right. Nobody told me.
“How much better would it have been if the home exercises that help lymphedema had been described to me earlier? I might have been able to avoid it.”
After a lifetime of being very active – boating, kayaking, swimming, golfing and even playing soccer at 50 –Aubrey has been slow to accept that he can’t do a lot of the things he used to.
“My friends will ring me, keep in touch and give me all the moral support I wish, but they will still go and play golf, and find someone else to make up the foursome. Their lives are slowly moving away from mine.”
Aubrey says he is now delighted to be in contact with hospice because it has made life so much more bearable.
“It’s not just that I’m getting to know them, but I have a very real port of call to go to when things are not going to plan. I have a number that I can call day or night and there have been occasions when the pain levels have got to me and I can pick up the phone and talk to a hospice nurse, and it’s wonderful.
“They make the time to be with me. It sounds a bit wishy-washy but when the sharp end of this thing eventually arrives, having a relationship and maybe even a friendship with those ladies will make things much easier for me than if it had been left to the bitter end.”
Aubrey recently took part in a patient focus group run by Warkworth Wellsford Hospice as part of its planning for a new community day hospice. It made him aware of how much support could be found in sharing experiences with other patients.
“Now that hospice is developing these premises, there are so many things they could do that would help people like me.” 
He believes a lot of people like him would appreciate the chance to come together for a Bridge night or art session, combining the enjoyment of the event with the kind of support they need. Art, physical therapy, cooking, gardening and discussion groups are among the activities proposed in the new hospice building.
“I believe people in my situation should be put in touch with hospice a lot earlier,” Aubrey says. “From a patient’s perspective, getting to know them early on in the piece, knowing what they can provide and having a port of call, is absolutely invaluable.”
(Aubrey died in November 2014 and is still inspiring people to support hospice via his story and video)


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Pictured: Robin Ross with his beautifully restored 1968 Jaguar.

Robin's story

Robin Ross has always been a man of action, and he sees no reason why a cancer diagnosis should change that.
On November 22 last year the 76-year-old retired farmer from Tomarata learnt he had cancer of the pancreas, liver and kidneys and was advised he might not see the year out. The diagnosis was devastating, but Robin swore he wouldn’t ‘run and hide’. He wanted to carry on living his active life – including a recently-realised passion for classic cars, and supporting his son’s saloon car racing.
He has been able to do that with support from Warkworth Wellsford Hospice, whose nurses have worked with Robin and his wife Frances to manage the medications that are vital to keeping pain and other distressing symptoms in check.
Robin loved old cars from an early age but it was an expensive hobby, so he turned his attention to vintage tractors – a more practical interest for a farmer’s son.  He would often buy an old model to do up over winter when work was less hectic, but put the brakes on when his collection grew to an unwieldy eight tractors.
In 2001 Robin and Frances sold their farm and moved to a Warkworth lifestyle block. Now that Robin could pursue his interest in classic cars, he bought a 1968 Jaguar in virtually original condition, with only two previous owners and 116,000 miles on the clock.
Beautifully restored with help from fellow members of the Warkworth Wellsford Vintage Car Club, the Jag won the club’s award for Best Reconstructed Car of 2012.  Robin recently drove the car home from Batley House on the Kaipara Harbour after winning the ‘Are we there yet?’ rally and, up until a couple of weeks ago, he drove it daily to the Warkworth RSA where he enjoys a game of pool.
The Jag shares space in the garage with a 1968 Zephyr Zodiac that Robin bought and restored about four years ago. The Rosses have been all over the country in their beloved classics; the Zephyr travelled 800 miles in one weekend without missing a beat.
Even since Robin’s diagnosis, he and Frances have driven in several rallies, including one to the South Island. Robin has continued to support their son Nigel at Waikaraka Park Speedway and further afield, and to make post-race repairs to his saloon car. In one busy fortnight in February, the couple drove home from the South Island one weekend, attended a car club picnic at Ti Point on the Wednesday, then the following weekend flew to Dunedin for five days trackside with Nigel.
Robin and Frances are planning more trips, including a big race meeting in Huntly on April 11. 
They weren’t so confident to begin with, though. Robin initially refused to go with Frances to doctor’s appointments and he relied on her to deal with all the medical details and his medication. Frances says “that big word morphine” was terrifying and she under-medicated Robin at first.
Just before Christmas the strain of “trying to be normal when we weren’t normal” became overwhelming, and Robin’s GP referred him to Warkworth Wellsford Hospice for support.
“We didn’t know we could just call hospice ourselves,” Frances says. “I believed they would come in when Robin was bed-bound.”
Hospice’s community palliative care nurses visited the couple and taught them how to cope with the disease and deal with the medications that control Robin’s pain and other symptoms, allowing him to stay active.
“Without Hospice I would be petrified of all the medication,” Frances says. “I have no fear of any of it now, neither the medication nor the disease. When we went to the South Island I checked if we had enough medication, and they said if we needed help we could call the nearest hospice.
“It’s nice knowing there is a relationship between us, hospice and the doctors, and knowing that when we get a sticky patch we can ring hospice and talk about it.”
(Robin passed away in April 2013 on the day before this story appeared in the Rodney Times)

For Further Information about any of the services mentioned, please contact

Warkworth Wellsford Hospice
PO Box 517
51 Woodcocks Rd
Warkworth

Ph 425 9535
email: admin@hospicehouse.org.nz

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