LOSS, CARE AND

ENDURANCE

CANCER › SEXUAL HEALTH › HEART › OBESITY › STRESS › DEMENTIA...

HEALTH MATTERS

MA

Y 17-23, 2012

The Voice supplement › page 23 - 26

INSIDE: › Young writer’s grief for mother lost

to lung cancer

› Veteran nurse discusses helping

lung cancer patients

› 24 year old mother’s

battle against lupus

| THE VOICE MAY 17-23, 201224 HEALTHMATTERS

She is a nurse who over-sees 234 patients suf-fering from one of the most painful things a human can experi-

ence; the incapacitation of the lungs by cancerous cells. Breath-ing comes so naturally we do not have to consciously think about it, but lung cancer changes that. It makes every breath a monu-mental struggle.

And this is a struggle that Jolly Barber has had to witness her patients face for the last seven years working in the lung cancer department for Southend Uni-versity Hospital.

The 42 year old nurse says she became involved in car-ing for lung cancer patients because it was the “right time,

right place.” It is demanding work that requires skills that can only be acquired through experience. “I provide support and care for patients and their families from time of diagno-sis until A, the cure, or B, the death.” Barber sees it like a journey, and she is the patient’s guide and companion, holding their hand in the many physical and emotional challenges they will face, many of them unex-pected.

TREATMENT“You have to do a lot of work;

from giving patients psycholog-ical support, emotional support and giving them information. And seeing to any other needs they might have.” She provides

special support for her patients as they undergo treatment, and also plays an important role in their end-of-life support.

So what is it like doing what she does? “It’s not always hap-py. I think it is hardest when you are providing support around the time of diagnosis. Informing families of the news is the difficult part. The most rewarding part is knowing I can provide the best care to my pa-tients, at what is a vulnerable time in their lives. And I can make a difference for them.”

Barber speaks of the com-plexity of delivering the news to someone that they have the cancer, for no matter how much you think about it, nothing can prepare you for the reality, she

says. “It’s very difficult in a real situation. You need to have feeling when giving someone bad news, you have to be very sensitive. You have to find out what their understanding is.

“Normally people have fam-ily with them when they get the news, but sometimes they come alone, and that is a little

more difficult.” Barber tries to separate the patient from their condition, not allowing to just see her work as countering lung cancer. “One of the nice things about being a nurse is that we look after all aspects, so it’s not just the cancer and the treat-ment, we get to concentrate on the whole person.”

Most of the people she sees as patients are there because of smoking, she says. “But there are other cases too, particularly among women.” The experi-ence has definitely made her stay away from cigarettes; “I’ve never smoked and never will.”

The nurse is of Indian herit-age, and was born in Kerala, South India. She came to the UK for her wedding; she met her English husband while he was doing charity work in the South Asian nation. That was over 19 years ago, and she has to think hard about the dates because of the amount of time that has passed. Barber had qualified in nursing before she arrived in England, but it was not a profession she chose for herself.

“To be honest, it was my dad who chose nursing for me. I wanted to be a college lecturer. I would have taught sciences, because that is what I studied at school and it was what I was good at.” Yet her father had other ideas. “My dad, who is an

evangelist, thought that nurs-ing was a better career. We were not from a rich family, we were poor, and so he wanted me to take a path that didn’t involve a BA and MA. He wanted me to just get a job.”

Nursing proved to be some-thing that she did not immedi-ately take to, “I didn’t like it to

start with, but once I qualified I really enjoyed working.” Barber still retains her original passion for her work, “I enjoy it now more than anything.” She is proud of what she does: “With this job I can make a real differ-ence in people’s lives. I have the freedom and authority to help patients in ways that would not be possible if I did something else.”

BELIEFCould she see herself doing

something else in the future? “Nursing is the only thing I know how to do very well, so I think I will be spending the rest of my professional life in nurs-ing.”

Barber got involved with the Department of Health’s cam-paign to raise awareness of lung cancer because she believes not enough people are going to see their doctor if they develop the disease’s symptoms.

“You have to go and see your GP if you have a cough for over three weeks. Plus there are oth-er symptoms: chest infections; shortness of breath; coughing up blood; and losing weight without explanation.

”The best piece of advice to anyone is smokers, “Giving up the habit is key, because not only are you endangering your lungs, you’re risking your whole body.”

It would be prudent to listen to her, as she has seen practi-cally every form of lung can-cer. And you can bet she does not want anyone else need-lessly contracting the disease, as it never gets any easier for her having to tell someone their lungs are about to experience the biggest battle of their lives.

Every breath you take she’ll be caring for you

“With this job I can

make a real difference in people’s

lives”

BART CHAN talks with Jolly Barber

DEDICATION: Nurse Jolly Barber

We are looking for motivated individuals to join our board of trustees or to volunteer experience and skills in fundraising, grant writing, welfare rights, cancer awareness raising, newsletter production, administration. If you have some time to commit to four board meetings a year and would like to be part of a well respected, London based, forward thinking organisation, why not give us a ring.

Speak to Natalie on: 020 8961 4151 or contact by email: natalief.cbc.org@btconnect.com

Cancer Black Care is a registered charity since 1996, supporting predominantly black and ethnic minority cancer sufferers and their families.

Lung cancer specialist nurse shares her experience of looking after patients whose each painful breath could be their last

Supplement Editor - Bart Chan

25MAY 17-23, 2012 THE VOICE | HEALTHMATTERS

By Bart Chan

Nikesh Shukla was supposed to have a career in law. After all that is what he stud-ied at university. But

Shukla, who says he was “not the most confident kid; I always felt that I had a really bland per-sonality”, decided to express his creative side and make sure that was what he did for a living. So much for bland. It was two years ago his writing took off, “Stuff actually started happen-ing rather than just filing things in a drawer.”

However, as is often the case in life, the unexpected in 2010 managed to sabotage plans just as things were getting good for Shukla. The writer’s mother be-came seriously ill and was diag-nosed with lung cancer. “They did a biopsy that found ad-vanced stages of cancer in her lungs, and it was terminal.” The news broke just as he was about to launch his first book, Coco-nut Unlimited.

It was supposed to be an ex-citing time, his novel, which draws upon those younger years of Shukla’s life when he thought himself “bland”, was gaining at-tention. The coconut in the ti-tle is a reference to the racial term classifying an Asian man as brown on the outside but white inside. The Metro called it a “sweet, comedic coming-of-age-tale”. Nonetheless, it was not going how Shukla en-visioned; “It was completely surreal, I was kind of pulled in

two different directions, because I had my novel coming out. It was like my wildest dream had just come true and at the same time I found out my mum was dying.”

Two days after he found out she was dying he had his book launch, and his mum could not make it. “It was a complete head [trip] for me. I had to stand there and smile and act like it was the greatest night of my life, but at the same time I was just really crushed, and I couldn’t commu-nicate that to anyone.”

ACCOMPLISHMENTShukla’s mother passed away

a month after her diagnosis, and she had only been home for two weeks. “They told us she had up to a year,” the writer says. The despair and bewilderment at how quickly his mother passed remains in his voice; he and his family had expected to have her for much longer. On the day of her funeral he was receiving congratulatory text messages, everyone wanted to salute his accomplishment of getting his debut novel published.

“I could have felt really alone, but having a big family around me, there was this massive sup-port network,” he explains. “Everyone was willing to help out when she was ill, trying to ensure my father and sister had as normal working routine as possible.”

Shukla recently wrote a book on last year’s riots, called Gen-eration Vexed, another clever title demonstrating his talent for visual word play. Yet the year before the riots he was having to

deal with the chaos and fallout of losing the person who held his family together. “My mum was the one who got stuff done, she was the person who brought us all together, she was a lynchpin. Without her weekly phone calls I wouldn’t have known what was going on in my family.” Luckily for him his family handled the situation admirably; “I come from a very pragmatic fam-ily, and everyone is concerned with doing stuff and doing the best they can.”

Shukla did not have time to think about himself, but did what was necessary. “I was at home as much as I could be.” And that meant he got in-volved as best he could with the care of his dying mother. “I had to pick her up in the mid-dle of the night when she fell off the commode, I had to wash her and brush her teeth, stuff like that. And at some point you have to compartmentalise your feelings for this person who is your mum, because you have to care for them without getting emotional about it.”

DYINGNevertheless, it was impossi-

ble not to let feelings get in the way, especially when Shukla’s mum finally left. “It was just a numbing shock for a re-ally long time for my family, because we had only just got used to the idea that she was dying and now she was dead.”

It is apparent how Shukla has not gotten over his moth-er’s death, and it is no surprise considering how they shared

such a close bond. Like any good writer, Shukla knows how to tell an anecdote, and he tells of his strongest memory of his mother, and it is not a sugar-coated one.

“This is a thing I will never ever be able to forget: I re-member being a spoilt child

and demanding that she bought me some A Team underwear or pyjamas from Debenhams. And she was winding me up, saying, “only if I was a good boy.” And then I hit her. The look of shock and upset on her face was some-thing I’ll never be able to forget because I never wanted to upset her in that same way again.

“I think that celebrates the bond we had even more than a nice memory, because as soon as I realised I abused the trust of this person I loved, I felt like the worst human being in the world, and I never wanted to abuse that trust ever again. And that is the bond we had.”

ANGUISHShukla tries to locate the

memories of his mother in this world through the senses, for this tragic loss has made him re-alise “how much of your mem-ory is tied to senses like smell and touch.” He explains the an-guish he feels through his sens-

es; “Whenever I go back to my parents’ house, it doesn’t smell like my mum and dad’s house anymore, and I will never taste the food that bonded us togeth-er, the food that she made. As much as I try to learn those reci-pes myself, they will never taste like the things my mum made.”

There is a poignant ritual he goes through to help himself feel close to his departed moth-er. “When I want to resurrect my mum, as it were, I put on the songs she used to listen to, and I make the food she used to make, and the house smells like her and sounds like her, so it’s kind of like she is still around, but it will never truly sound like her house, never truly smell like her house.”

Perhaps it comes naturally to this writer in describing his loss in such a moving way. However, all the finest crafted words in the world cannot bring back his mum, and you sense this is what he wants most.

“They told us she had up to a year”

X-RAY VISION: Writer Nikesh Shukla poses for the Department of Health’s lung cancer campaign

The grief of losing someone irreplaceable

| THE VOICE MAY 17-23, 201226 HEALTHMATTERS

By Bart Chan

Rochelle Gregoire was 18 years old when she contracted lupus. The disease is brutal and indiscriminate. “It’s

an auto-immune system dis-ease where your body attacks itself. It mimics other diseases like arthritis, and you get stiff, swollen joints. It affects your whole body, your liver, your brain, everything,” explains Gregoire. For her the disease did more than just assault her healthy cells.

“My hair was falling out and I was losing weight, and my joints got painful and stiff. When I first got it I lost all my confidence and self-esteem.”

Gregoire was in college at the time and working. Lupus made her stop, her life came to a halt. She stopped going out, she stepped back from her so-cial life, leaving her friends in the dark, as she did not tell them what had happened to her. “I think I got depressed as well. I didn’t want to see people, I stopped going out. I isolated myself.”

HURTSLupus took away the world

she knew and thrust her into a place where she no longer felt secure in her own body. Yet what else could she hope to feel when her body was attacking

her? The disease has been re-lentless and has taken its toll on the 24 year old mother of one. “Since I’ve had the disease I’ve never been pain free, there’s al-ways something which hurts. At the minute I’ve got really bad headaches.”

Gregoire’s one year old daughter plays in the back-ground, screaming joyfully to her heart’s content. How has motherhood changed her life? “I’ve now got something to look forward to, she says happily, “something I can live for.”

Life is tough for her though. Gregoire makes it easier by keeping certain things from herself. One could argue the no-tion that ignorance is bliss is applicable in her case, for she consciously chooses to not re-search and find out more about the illness that ruptured the life she knew before 18.

However, this would not be adequate, because there is

something brave and defiant about the young mother’s at-titude. It is not as though she thinks that if she does not think about it, the disease may go away. Perhaps it is rather she already has to live through it, so why burden her brain even more about it? She is trying to reclaim some of her life back from lupus.

Gregoire says it best, “Be-cause I’m constantly in pain, what’s the point of learning anything more about it?”

She looks back at her life be-fore lupus and what she hoped for in the future. “I was study-ing social work and planning on going to uni.” She still re-tains hope of a future where she can have a career in social work and be able to not let lupus dic-tate what she can and cannot do. Yet, Gregoire’s condition remains highly restrictive. “Get-ting up from a sitting position is hard. When walking I get re-ally breathless, I can’t walk long distances. My hands get swol-len so I can’t lift things.” It has complicated her ability to do the simple things most mothers take for granted, like preparing a meal for their child.

INSPIRINGGregoire has made significant

progress since lupus left her confidence at rock bottom. She will be participating in a fash-ion show for the lupus fund-raiser, called Inspiring Edge. And she is not taking a back-stage role, the 24 year old will be in the limelight, parading down the catwalk, not some-thing she probably could have imagined herself doing when she shut herself away from the outside world. She says, “I’m a bit nervous, it’s not something I’ve done before and I’m quite a shy person. Everyone watch-ing will be a new experience.”

SELF-CONFIDENCEGregoire says anyone who

is in her shoes of a few years ago cannot make her mistakes. “You’ve just got to feel good in yourself, tell your friends about it so they can support you.” The other crucial part of advice? “Don’t over think it, don’t stress too much, other-wise that’s the way the disease beats you.

”Gregoire may not want to delve into details, but who can blame her when she does not go a day without physical pain. And she has found a way that works for her; she has re-gained her self-confidence, and what better way to prove

it than by strutting down a cat-walk in glamorous clothes. But do not expect her to bare all,

because Gregoire says she is up for her new outfits “as long as they’re not too revealing!”

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Rebuilding self-confidence when your body attacks itself

Lupus sufferer, Rochelle Gregoire, talks of her six year struggle with her own body.

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CONFIDENCE REDISCOVERED: Rochelle Gregoire has had to changer her life because of lupus