ME AND MY MACMILLAN NURSE... FOUR MOVING LETTERS BY PATIENTS
What would you tell the person who has been there for you after the trauma of a cancer diagnosis? Four NI people pen a letter...
THE PATIENT Tricia Roulston
Civil servant Tricia Roulston (44), from Coleraine, was diagnosed with a brain tumour in January 2017. She is married to Finlay and they have a 21-year-old son, also called Finlay.
Tricia says she had experienced symptoms for a long time but they were easily explained away as headaches and fatigue. It was only when she took a grand mal seizure in her sleep in the early hours of January 20, 2017, that a scan revealed that she had a brain tumour.
“It was a very large brain tumour and had been there quite a long time and they told me it wouldn’t be possible to get it all out,” she says.
Tricia underwent two surgeries, a series of radiotherapy sessions and some chemotherapy, but after the first year took a bad reaction to the medication she was taking and fell gravely ill.
She pays tribute to her Macmillan nurse, Terry, for his tenacity in getting to the bottom of what was causing the problem: “He literally saved my life,” she says. “Although we know it is incurable, touch wood it’s all very calm now. There is still some of it in there. What what’s left is very calm and there’s no ‘angry bits’ in it.”
Tricia says Terry refused to give up on her. In her letter, she says: “Not content with saving my physical body you set to work on saving my emotional self, too. You talked to me, you listened to me, you explained things and you calmedmedownandyoudidthe same for my whole family. I owe you my life.”
She says that when you get that diagnosis, there’s a delayed reaction: “You’re sitting there listening and then the surgeon walks away and half an hour later you have 50 questions coming into your head. I’d say ‘Terry, explain this bit to me’.
“Terry is a big dote of a guy — he is just an absolute sweetheart. My son was doing A-levels and he spent time with him and he was just there explaining things and reassuring us.
“The Macmillan nurse almost becomes part of the family. He explained all the technical stuff in the simplest terms without scaring the life out of me — but he was always very honest.”
More recently Terry has supported Tricia in returning to work and she has organised the annual fundraising Triciafest, bringing together a host of local bands to play a charity gig. Last year Triciafest raised £4,655 for Macmillan and Tricia is in the early stages of planning for Triciafest2020.
“It’s knowing that the nurses are there the whole way through — it’s not just when crisis hits. They do everything from start to finish,” Tricia says.
THE NURSE Terry McVeigh
Macmillan nurse specialist in palliative care Terry McVeigh (58), works for the Northern Trust and is based at the Causeway Hospital.
He says Trish became one of his patients when she came into the hospital.
“She was very ill and she had deteriorated due to a brain tumour. It was thought that she might be in the terminal phase and coming to the end of her life,” he says.
“My job was to become her specialist nurse and assessor of her physical, psychological and spiritual needs.”
Tricia had become very weak and was in a lot of pain, but Terry questioned whether her deterioration was due to a brain tumour or whether there was something going on in the background — and it turned out that some of the medication she was on needed to be reviewed.
Terry says it was absolutely wonderful to read Tricia’s letter.
“My gosh, it’s those things that make you realise the work youdohasvalue,whenapatient says nice things and it allows you to believe you made a difference in their life — that is what motivates you and shows you the value of the work you do,” he says.
“When you see her, she’s just very special and she’s worked really hard to get her life back on track again and she’s a great inspiration. She puts life in perspective. She gets on and lives life to the fullest.
“The way I’m able to cope as a palliative nurse is to see it as a positive experience where the care that I give is therapeutic, to allow patients to have the best quality of life — and that is where you get your job satisfaction from.
“Sometimes it’s supporting patients at a time when they may be preparing to leave this world. In end-of-life care there is a lot of humour — you meet a lot of wonderful people and part of your support for them is to allow the illness to fade into the background and just be there with them and look at some of the positive things that are happening in what can be a very sad situation.”
THE PATIENT Pat Hamill
Publican Pat Hamill (60), from Broughshane, owns the Halfway House between Ballymena and Carnlough. He was diagnosed with mouth cancer in 2015. He is married to Cecilia and has three children.
Pat says he was diagnosed in July 2015 after his dentist noticed his symptoms, and had his surgery at the beginning of August.
“It was just a wee small cut on the underside of my tongue — it was tongue cancer and half my tongue had to be removed,” he says.
“I just felt scared in the sense that I was going into the unknown and I didn’t know what was happening. You’re in a lonely sort of a place.
“At the time I worked for about seven days a week — I was a sort of workaholic. I’d never had any problems with my health in my lifetime and this came as a surprise.”
Pat says that when he received his diagnosis, he felt lonely and scared but his Macmillan nurse, Cherith Semple, who treated him at the Ulster Hospital in the South Eastern Trust, was right there with him during his cancer journey.
“Cherith was at the hospital on the first day to meet me, along with the surgeons, to explain what was going to happen and when it was going to happen. She was somebody to explain what was happening and that there was a future at the end of this. Prior to all this
I thought there was no future,” he says.
“I felt secure because she was there. If I had any questions or queries, I would ask Cherith — she was only a telephone call away. She explained everything so well. She brought you through stage by stage. She had the answers before you could even ask the questions!”
After the scars healed Pat underwent radiotherapy and is now back to working every day. Since his surgery he has raised around £63,000 for Macmillan, mostly through the generosity of friends and customers in the bar.
In his letter to Cherith, he says: “I felt I was in the loneliest, scariest place ever but you explained the journey ahead, how it was going to be tough but you convinced me that I would see it through.
“You became part of our family, you provided the answers before the questions were asked. You convinced me I really could beat cancer. From myself, my family, thank you.”
THE NURSE Cherith Semple
Macmillan nurse Cherith Semple (mid 40s), who lives in Newtownards, works with newly diagnosed patients affected by head and neck cancer.
She says her main role with Pat was to provide support and information as well as co-ordinating his patient pathway.
“You’re supporting patients at
a very uncertain period and it’s common to feel upset and uncertain at this period of time,” Cherith says.
“I met Pat and his family at the time he was diagnosed — I would have been supporting him when he was newly diagnosed, helping him to have a greater understanding of this treatment options and ensuring he had adequate information before having major surgery for mouth cancer.”
Cherith says patients who have surgery for mouth cancer can also experience impacts on speech, eating, appearance and neck and shoulder function and those were some of the additional issues that come up in her supporting role.
“When I saw the letter I was very touched to see what Pat had said. It was just lovely to hear and see Pat in the little video clip,” she says.
“What has been so outstanding from Pat is his tenacity to continue ongoing fundraising. He has an exceptionally supportive community which has raised a phenomenal amount of money for Macmillan. It’s lovely that he and his community want to give back something locally for cancer patients.”
THE PATIENT Gary Hunter
Retired civil servant Gary Hunter (63), from Comber, was diagnosed with chronic lymphocytic leukaemia, a cancer of the white blood cells in 2008, and then with transitional cell carcinoma in 2011. He is married to Helen and has three children and two grandchildren.
Gary says his only symptoms at the start were fatigue but a series of blood tests revealed he had chronic lymphocytic leukaemia, which is incurable. Later he was found to have transitional cell carcinoma on his right kidney and had to undergo surgery to remove the kidney, ureter and part of the bladder.
He says it was difficult to cope with two separate diagnoses so close together, but his Macmillan nurse Patricia Thompson, who has treated him for 10 years and is a specialist in urology within the South Eastern Trust, was an invaluable source of support during his cancer journey.
In his thank you letter, he tells Patricia: “As my Macmillan nurse you were there in the consultant’s office the day I received my diagnosis and I’ll never forget how kind you were. You were and continue to be the warm human interface between people in my situation and the sometimes overwhelming onslaught of clinical information.
“Cancer can be a lonely journey through a sinister, treacherous landscape but you’ve done so much to make my experience so much less difficult and traumatic. You managed to combine warmth and humanity and a high degree of professionalism. You make such a difference.”
Gary says Patricia was always there for him.
“I coped alright until the second diagnosis and then I thought, ‘My God, what else can go wrong?’ It isn’t easy, but I’ve realised that I’m a lot stronger than I give myself credit for. It’s a very humbling experience. It’s a learning experience and it’s a chance to see it almost as a positive experience, if that makes sense. I learned so much from it. The more you find out, the less it has the power to frighten you.
“I don’t think Macmillan nurses get the credit they deserve. People are very quick to knock the health service, but I think you’ll appreciate it when it’s gone.
“Patricia is always professional — she’s very approachable and warm. I know if I’ve any issues or concerns, I can always contact her and she’s there with advice and support. She and her colleagues do an absolutely fantastic job — they are stars.”
THE NURSE Patricia Thompson
Urology clinical nurse specialist Patricia Thompson (51), from Craigavon, deals with cancer review and follow-up and provides flexible cystoscopy services.
“Part of my main role is that
I am a good support of patients who have been diagnosed with cancer,” she says.
“I’m a point of contact that they have if they have any concerns or issues and I can signpost services that might be of benefit to patients.”
Patricia was present when Gary received his initial diagnosis and was able to explain what was happening and be there as a point of contact.
“Part of Gary’s treatment and his follow-up is that he has to go for regular cystoscopy, so it’s good continuity of care that I am the key worker and responsible for part of his follow-up treatment as well,” she says.
Patricia says it was lovely to read the letter from Gary.
“I was very touched,” she says. “It makes you appreciate the good work we are doing and the good work Macmillan does.
“It puts down what it’s all about. It sums up what we’ve done for patients and the support we are giving for them.
“They really see you not just as a nurse, but as part of their family and being a good friend as well.”
THE PATIENT Joy McCreery
Joy McCreery (73), from Portadown, was diagnosed with lung cancer in March 2014. She has three children, five grandchildren and four great grandchildren.
Joy says she had been coughing up blood, but delayed consulting the doctor because she knew deep down she had cancer.
“I was just coughing 24/7 so the doctor sent me straight away for assessment,” she says.
She was told that the cancer was terminal and doctors couldn’t operate because of the position of the tumour in the lung.
Joy says she was unprepared for the range and depth of problems that she faced following her cancer diagnosis, but Macmillan nurse Joanne Frazer, who treated her at the Mandeville Unit at Craigavon Hospital, was with her during her cancer journey.
“She’s just wonderful — I don’t know where you would start. She gave me so much advice and help on how to ease my symptoms and breathing techniques. She was at the end of the phone any time when I wanted to speak to her.”
Joy says that she has just accepted her condition. “I was happy that it’s me and not one of the younger generation,” she says.
“You have to accept what you can’t change.
“I haven’t shed a tear over it yet but I have the best family in the world.
“They have looked after me and there’s always someone around to do the jobs I can’t do, like vacuuming or cutting the grass.”
In the video, Joy reads out a thank you letter to Joanne, saying:
“My entire world changed when I was diagnosed with lung cancer.
“You were introduced to me as my Macmillan nurse and you have no idea how much you have done for me.
“Joanne, you are so warm, generous to a fault and have always shown incredible acts of kindness to me.
“You are amazing — what you have done for me is unbelievable, so from the heart, thank you.”
THE NURSE Joanne Frazer
Macmillan lung cancer nurse specialist Joanne Frazer (54), from Armagh, works for the Southern Trust at Craigavon Area Hospital. She is married to sales manager Roy and has two children and two grandchildren.
Joanne says her role is to offer the person advice and support, symptom management and holistic assessment at any stage of their cancer journey.
“I was privileged to meet Joy a couple of years ago at diagnosis,” she says.
“I was able to be there for Joy around diagnosis and in a variety of ways, including support and the management of breathlessness. There is a really special bond when you are helping someone. It’s such a privileged position to be in.
“Folks can be so vulnerable when they receive a diagnosis and it’s a privileged position to be able to help in any way at all.
“It can be difficult to switch off in this role but I think you have to do the very best you can for that person — if you feel you’ve made a difference that’s so important.
“When I saw the letter I was so delighted.
“I could have cried, to be honest. I was just so humbled.
“For someone who has come through so much to take the time to do that, it was very special and she is a very special lady,” she adds.