Gil Goldthorpe’s diaGnosis with CMl has spurred her on to reassess her life

AlwAys look on the bright side – eddie Gunn Pouring oil on troubled wAters – essential oils Can boost patients’ wellbeinG

www.journeymagazine.org.uk autuMn 2010

cAring for the leukaeMias, hodGkin’s, non-hodGkin’s

and other lyMphoMas, MyeloMa, Myelodysplasia, Myeloproliferative disorders, aplastiC anaeMia

A question of control

01.cover.indd 1 9/9/10 12:33:35

Contents

ur Leukaemia CARE patient stories never fail to invoke

a variety of emotions. Always inspirational, sometimes sad but often joyful, the stories can inspire readers to reassess how they live their lives. In this issue Gil Goldthorpe, CML patient, achieves a life-long

ambition to be a cover girl. We’re sure you’ll agree that Gil adds more than a touch of glamour to this issue – read her amazing and thought-provoking story on page 10. We also catch up with four patients and carers featured in previous issues of journey and report on how their lives have changed since we last interviewed them.Positive steps focuses on essential oils as a complementary therapy – we hope you enjoy Mary Connolly’s tips on how the oils can help you relax and also boost your immune system.We’re delighted to report that the winners of our VIP Weekend to Remember competition really did have a weekend to remember. See page 16 to read more about the wonderful time had by the patients and their families in Birmingham.And, finally, it’s never too early to order your Christmas cards. This year Leukaemia CARE has a fantastic range to help you celebrate the festive season and also support the charity. Please see the enclosed brochure for more details.—Albert Podesta, Chairman

Welcome

T 020 7737 6625E info@curvedmedia.co.ukwww.curvedmedia.co.uk

is produced by Leukaemia CARE and published by Curved Media Limited

President Dr Richard Taylor l Vice Presidents Professor Alan Burnett l Professor John Goldman l Professor Andrew Pettitt l Professor Alexander Spiers l Dr Philip Darbyshire l Dr I W Delamore l Dr Noel Harker l Dr Andrew Hepplestone l Dr Pamela Kearns l Dr Tim Littlewood l Dr Robert Marcus l

Dr Bernard McVerry l Dr Eric Watts l Mrs R A Ashley l Mr Jason Eliadis l Ms Sheila Hegarty l Mrs Elaine Ives l Mr Peter Ives l Chairman Albert Podesta l Vice Chairman Chris Matthews-Maxwell l Treasurer Clive Hatt l Trustees Rosalind Ann Ashley l Roland Maturi l Dr Antonio Pagliuca l

Patrons Gary Lineker OBE l Lady Ivar Mountbatten l Lorraine Kelly (Leukaemia CARE Scotland)

Leukaemia CARE’s Governance

© L

euka

emia

CAR

E 20

10

OThe forum supports

you through your illness but it’s also about making friends

lookon the

Always

brightside

06

�

02-03.conts.indd 2 9/9/10 12:45:36

Should you wish to enquire further about any of the matters raised in journey or anything to do with the work of Leukaemia CARE, please contact: Leukaemia CARE, One Birch Court, Blackpole East, Worcester WR3 8SG, call freephone 0800 169 6680 or email: journey@leukaemiacare.org.uk

AUTUMN 2010 ISSN 1757-2398

© Leukaemia CARE 2010. Reproduction in any manner, in whole or in part is strictly prohibited without express permission from Leukaemia CARE. The views expressed in this publication do not necessarily represent the views of Leukaemia CARE. Whilst all due care is taken regarding the accuracy of information, no responsibility can be accepted for errors. Any advice given does not constitute a legal opinion. The printing of any advertisement in journey does not necessarily mean that Leukaemia CARE endorses the company, product or service advertised.

01 The CARE Line is the only dedicated freephone service for people affected by leukaemia, Hodgkin’s and other lymphomas, myeloma,

myelodysplasia, myeloproliferative disorders and aplastic anaemia. You can talk to someone any hour of the day or night, 365 days a year.

�4-hour CARE Line 0800 169 6680

02 Regional CARE Teams

key

serV

iCes

03 Website and Message Board04 Holiday Programme05 Financial Assistance06 Information and Booklets07 Support Groups08 Cancer Campaigning

Lighting up Worcester l

Children’s quilts l Show your support for Leukaemia CARE through our Christmas cards l News and events from Leukaemia CARE Scotland

Always look on the bright sideEddie Gunn on remaining positive while battling MCL

Pouring oil on troubled watersEssential oils are hugely beneficial as a complementary therapy, says Mary Connolly

A different pathwayBeing diagnosed with CML has had a profound effect on Gil Goldthorpe’s life

In brief04

06

08

10

Filtering out the problemjourney reports on the implications of a splenectomy

Having a blast in BirminghamThe VIP Weekend to Remember,was a fantastic event enjoyed by patients and their families

journey’s returnFour patients and carers give updates on how their lives have changed since we last spoke to them

Fundraisingl Raise money for Leukaemia CARE and enjoy an amazing opportunity to trek across the Sahara Desert or through Peru l Santathon returns and we introduce the Mini Santathon

INSIDEAuTuMN 2010

12

14

16

18

Always

brightside

�

repro.indb 3 9/9/10 12:36:34

In brief

4

Children’s quilts – all sewn upLeukaemia CARE is working with the charity Project Linus to donate quilts to children and teenagers with blood and lymphatic cancers. The aim of the quilts is to provide children with tangible evidence that someone cares, along with the physical reassurance that comes with being snuggled up in a quilt and a lift to the spirit from the bright colours and cheerful patterns sewn into it.

Project Linus, a volunteer organisation which started in America to provide a sense of security and comfort to sick and traumatised babies, children and teenagers through the provision of home-made patchwork quilts, gives needlewomen across the UK the opportunity to contribute to their local community.

If you know a child or teenager who would benefit from receiving a quilt please contact the CARE Line on 0800 169 6680.

Noah’s Ark and Leukaemia CARE light up Worcester This year Leukaemia CARE is teaming up with Noah’s Ark, the children’s bereavement support charity, to light up a Christmas tree outside the head offices of both charities in Worcester. Both charities are based on the same estate at Blackpole East and the tree can be seen by visitors as well as by people travelling past on the busy B4550.

The tree will also feature special Christmas stars, which can be dedicated to someone special to you. His or her name will be written onto the star and displayed on the tree along with the wording ‘even a small star shines in the darkness’. Stars can represent anything – remembrance, love, hope or reflection. We will also send you a star featuring the same wording for your own tree. Stars are available from both charities at a cost of £5.

The lights on the tree will be switched on the evening of Monday 29 November 2010 with a small service of dedication and carols around the tree, followed by mulled wine and mince pies in the Leukaemia CARE offices. Your loved one’s name will also feature in the Order of Service for this service. Everyone is welcome to attend.

repro.indb 4 9/9/10 12:36:39

Early season’s greetingsLooking for an easy way to support Leukaemia CARE? This year, why not use our Christmas cards instead of buying them on the High Street? The range for 2010 includes four cards – Midnight Mass, Winter Robin, Christmas Post and Happy Christmas. The cards cost £2.50 for a pack of 10 and every pack sold helps us to raise vital funds. Could you sell them to your friends and family too? Please contact us for more copies of our Christmas card flyers.

�

Sister and brother act – a hard one to followColin Sharp and his sister Claire Kelly (pictured left) have managed to raise the amazing total of £2,713 for Leukaemia CARE Scotland through a number of sponsored events.

Colin and Claire took part in the 2010 Edinburgh Marathon, held a sponsored waxing, a race night, a raffle and various other activities to achieve the sum. The prizes for the raffle were donated by local companies in and around North Lanarkshire.

Role up, role up for annual Charities Christmas FayreLeukaemia CARE Scotland is taking part in the Annual Charities Christmas Fayre on Wednesday 24th November between 10am and 4pm at City Chambers, Glasgow. We are also looking for help with collections across Scotland. If you have a couple of spare hours, please get in touch.

Leukaemia CARE Scotland

New recruit to set up support groups Leukaemia CARE Scotland has just recruited a new member of staff to join the team. Nadine Bloomfield joins the charity as Outreach Development Officer Scotland and will be tasked with setting up new support groups across Scotland, including finding funding for the groups. “I’m really excited by the new challenge that this role brings and I’m looking forward to meeting lots of our patients and their families as I travel the country,” says Nadine. Nadine will be based in Glasgow, but if you are interested in helping to set up a support group in your area please get in touch via the CARE Line on 0800 169 6680.

repro.indb 5 9/9/10 12:36:51

Despite battling MCL since 2006, Eddie

Gunn always manages to maintain a positive

outlook when faced with difficult situations

these were inconclusive,” recalls Eddie. Due to the vagaries of the NHS, Eddie

had to be referred for further investigation to the Luton and Dunstable Hospital, even though this could have been undertaken at his local hospital in Milton Keynes.”It was all rather baffling,” says Eddie. “Because I had to go to Luton I had a two-week wait at an extremely worrying time.”

Eddie’s consultant diagnosed him with MCL at the Luton and Dunstable Hospital. “When the consultant told me that I had MCL it didn’t really mean anything,” he explains. However, on hearing that MCL is an incurable cancer, Eddie and his family started to understand the repercussions of his diagnosis. “The consultant said that

MCL can’t be cured but that he would do his best to get me into remission. It was a very difficult time,” recalls Eddie.

Following a lumbar puncture Eddie embarked on what was to be a long and arduous journey to find a drug that would put his MCL into remission. “Taking my first course of drugs was very strange,” he recalls, “although I had to swallow them – all 14 of the tablets – I had to use gloves to put them in my mouth.”

Unfortunately, this course, and many subsequent courses of drugs, failed to have any impact on Eddie’s MCL and he also had to undergo five blood transfusions to ensure he was fit enough to embark on any new treatment. As

Eddie’s story

6

ddie Gunn has been living with mantle cell lymphoma (MCL), an aggressive type of non-hodgkin’s lymphoma, since May 2006. His

form of lymphoma is particularly rare and, sadly, incurable. However, despite such a devastating diagnosis, four years later Eddie has managed to maintain a wonderfully optimistic and inspirational outlook on life.

Eddie, now 67, lives in Bedfordshire and says his diagnosis was made after his wife noticed a lump on his neck. “I went to see my GP who immediately referred me to Milton Keynes Hospital where I had a biopsy, a CT scan and an MRI scan but

E

lookon the

brightside

Always

repro.indb 6 9/9/10 12:36:56

Team at Leukaemia CARE, he contacted campaigning barrister Peter Telford who advised him on how to persuade his Primary Care Trust to fund his treatment.

Sadly, however, this course of treatment also failed to have any impact on Eddie’s MCL and he had to undergo bouts of radiotherapy at Northampton Hospital to remove lumps that were causing pressure on his lung and discomfort in his stomach. “Once my lung was zapped,” recalls Eddie, “I could breath again. But then we were hit with a bomb shell when the consultant said that there was very little else they could do and that I only had about six months to live.”

A fervent supporter and follower of Leukaemia CARE’s online forum, Eddie

Eddie humorously explains: “My blood was knackered so the hospital would get me reasonably fit through a transfusion and then try a different drug.”

Coping with such a brutal prognosis and its treatment is extremely difficult, but, to make matters even worse, at one point Eddie was refused access to potentially life-extending drugs – rituxima and vincristine. “It just seemed so unfair,” recalls Eddie. “I was struggling to remain positive and then was told that a treatment I had pinned my hopes on wasn’t available to me because of funding.”

However, Eddie’s dogged spirit shone through and, following advice and support from Tony Gavin and the CARE

PH

OT

O:

SA

M A

SH

LEy

�

says that he cannot thank his online friends enough for their encouragement and support. “They welcomed me with open arms and are always there for me.”

The only treatment left available to try was a new drug not licensed in this country. “It was brought out in the 1960s and is made from mustard gas. Amazingly, a lump on my arm and one on my shoulder blade started to go down with the second course of treatment so it seemed to be working. Mind you,” Eddie jokes, “After having 26 CT scans, four MRI scans and a month of radiotherapy I now glow in the dark.”

Eddie is hopeful that this drug will continue to work for him and is embarking on a further course of treatment.

Alongside his MCL, Eddie worries about suffering another onslaught of pneumonia which made him extremely poorly earlier this year and he is also now struggling with his sight. “My life does revolve around hospitals and the impact that my illness has had on my wife, Gilly, and my family is immense. She’s a part-time carer for me which she does with so much love. She’s amazing,” says Eddie.

Explaining how MCL has impacted his life Eddie explains: “I’ve always loved nature but my eyes have been opened even wider to the beauty around me since my diagnosis. I garden when I can, walk the dog and I still love cooking.”

As fellow members of Leukaemia CARE’s forum will be aware, despite any situation that Eddie is faced with, his sense of humour always shines through. “I’ve had so many injections that I’m like a pin cushion,” he jokes, “but I’m just so grateful to still be here.”

The irrespressible Eddie adds: “I’m not a doddery old fart just yet and still enjoy life. I might occasionally get down but I do try to look on the bright side of life.” And anyone who knows Eddie couldn’t fail to agree with that sentiment.

Mantle cell is a rare type of lymphoma and accounts for about 1 in 20 of all cases of non-hodgkin lymphomas. It is a cancer of the B-cells. Mantle cell lymphoma can occur at any age from the late 30s to old age, but is more common in the over 50s. It is three times more common in men than in women.

The first sign of the condition is often a painless swelling in the neck, armpit or groin, caused by enlarged lymph nodes. Usually more than one group of nodes is affected.

Other areas of the body may also be affected, such as the bone marrow, bowel, stomach, liver or spleen.

MANTLE CELL LyMPHOMA

repro.indb 7 9/9/10 12:37:00

Positive steps

Aromatherapy is a natural treatment that can maintain and improve your health and

wellbeing – in mind, body and spirit. It uses the concentrated herbal energies in essential oils from plants through massage, inhalation and baths. Like other holistic treatments, aromatherapy treats the whole person and not just the ailment.

Although aromatherapy can’t cure major illnesses it can help to alleviate some of their discomforts, including stress and mood swings. Aromatherapy also stimulates the immune, respiratory and circulatory systems and can help strengthen resistance to disease and combat infections.

Essential oils are plant based and can be inhaled, applied to the skin as

Pouringoilon troubled

oils, creams and compresses and used in the bath. The oils can also be used for massage which is gentle, relaxing and therapeutic.

ESSENTIAL OILS, ExAMPLESHerbs: lavender, roman chamomile, basil, marjoram and rosemary.Flowers: rose, ylang ylang, jasmine and neroli.Wood: sandalwood, cedarwood,

rosewood and teatree.Citrus: lime, orange, grapefruit, bergamot and lemon.

THERAPEuTIC quALITIES OF AROMATHERAPyl relaxation, especially during massage;l the relief of tension and stress;l improvement of low moods and depression;l the relief of pain and musculoskeletal problems, nausea, constipation; andl hot flushes and insomnia.

The essential oils used in aromatherapy can create a relaxing mood or atmosphere using a burner or an aroma stone. Place some warm water in the container then use a few drops of a base note or wood fragrance, such as sandalwood, known for its relaxing, spiritual qualities. Add a few

8

repro.indb 8 9/9/10 12:37:04

drops of a citrus oil – great to help uplift your mood – for example lime, bergamot or grapefruit, then a few drops of flower essence, such as neroli, rose or geranium.

When all the oils have been added to the water, light the candle underneath the dish. Be careful not to leave the candle unattended or let the dish dry out and keep applying water as necessary.

Essential oils must be handled carefully as they are highly concentrated, volatile and very potent. They must be kept away from the reach of children and should be stored in a cool dark place as, if exposed to sunlight, the chemical component of the oils might change.

Undiluted oils must never be applied directly to skin – a base cream or base oil, such as sweet almond, calendula or olive oil, must always be used. It is also important to just use small quantities

on troubled watersMary Connolly* extolls the benefits of essential oils as a complementary therapy

of essential oils, especially if you’re undergoing chemotherapy, radiotherapy, or recovering from treatment.

BE AWARE THATl some essential oils can provoke an allergic reaction so should be tried on a small area of skin first;l do not use close to the eye area; l take care if using while pregnant, as some essential oils are contra indicated;l be cautious if using on children – use well diluted and in very small amounts;l careful supervision is required with certain medical conditions – epilepsy, diabetes, heart disease and high blood pressure. For example, rosemary essential oil is contra indicated for people with high blood pressure; andl some oils, especially the citrus oils, provoke sensitivity to sunlight, so avoid

the sun after a massage with citrus oils and only use on the face at night.

THE GIFT OF LAvENDERLavender is a wonderful essential oil. A great addition to any first aid kit, neat lavender can be applied over scalds or minor burns. Lavender can also help with insomnia, headaches, muscular aches and pains and bruising.

ESSENTIAL OILS IN THE BATHUse small amounts of oil, for example three drops of lavender, two drops of roman chamomile and three drops of bergamot. Add the oils to some milk first and then pour into the bath water. The oils must be mixed well into the water or they will concentrate on top of the water, or on the bottom of the bath and can burn the skin.

MARy CONNOLLyHolisTiC THeraPisT Mary Connolly is a complementary therapist, and also a yoga & meditation teacher for the Macmillan Support & Information Centre, Belfast City Hospital. She has 11 years experience of working with cancer patients.

9

repro.indb 9 9/9/10 12:37:08

months. The side effects, unfortunately, made Gil feel quite ill. “I felt sick most of the time and had fluid retention all over my body. However, I took the drug for 14 months before it had to be changed.”

In September 2008 Gil started the drug dasatinab. This treatment proved to be very successful and by January 2009 she had turned a corner both health wise and emotionally. “I had to change my life and make my own future so I decided that 2009 would be my year,” recalls Gil.

Reading an article in journey about Chanelle Rogers, a fellow CML patient, who, despite her diagnosis had gone on to study at university, inspired Gil to reassess her life. “The side effects of the drug were not too bad and I was feeling well both physically and emotionally so decided to undertake a fundraising drive which lasted the whole year,” she says.

Gil went on to organise a garden fete, take part in Race for Life and model in a fashion show. Her husband and son also did a charity bike ride and took part in It’s a Knockout-style charity event competition. Gil’s fundraising year raised about £10,000

Gil’s story

10

for cancer charities. Going from strength

to strength, Gil then decided to follow her lifelong ambition of working with animals and studied for a Diploma in Animal Care which she passed

with a Distinction. “I’m very proud of my fundraising achievements and particularly delighted with my new life as a student,” she says.

This year, despite the fact that her CML is no longer under control, Gil has started a National Diploma in Animal Management. “My CML seems to have invited all its friends round and they’re having a party,” she jokes. Gil has had to stop all chemotherapy treatment and is now waiting to hear if a bone marrow match can be found. “My consultant says that my CML can be kept stable but I need a bone marrow transplant within the next year,” she explains.

However, despite Gil’s next challenge to find a match she remains positive and says that her CML experience has taught her a great deal. “I had to reassess what I was doing and take my CML and make it work for me. I am more confident now than ever before and I am able to achieve more than if I had not been diagnosed with CML,” she says. Gil firmly believes that if you can take control of your life and not let leukaemia control you, then you’ll be the winner.

il Goldthorpe was preparing to embark on the adventure of her lifetime – emigrating to Australia – when she tragically embarked on a

very different journey to her intended one. “The final stage of the emigration process

is an extensive medical examination,” recalls Gil. “But a routine eye test had to be followed up by a visit to an opthalmologist which revealed I had retinopathy, a symptom of diabetes.” Unhappy with her potential diagnosis, Gil was sent for blood tests to establish whether she had diabetes. The tests resulted in an out-of-hours call from her doctor’s receptionist instructing her to go to Ward 24 at her local hospital the next day.

“My 10-year old son’s school was closed so I had to take him with me to the hospital,” says Gil. “When we finally found Ward 24 the sign over the door read chemotherapy. My legs turned to jelly and I thought that someone had made a huge mistake – why on earth would I be sent there for a diabetes diagnosis?”

After contacting a friend to take her son home, Gil was seen by a doctor who calmly told her she had cancer. Gil went into complete shock and told the doctor that he must have made a mistake as she didn’t feel ill and had been diagnosed with diabetes. “It was surreal, I couldn’t see or hear the doctor speaking and l felt as though I was being sucked down a tunnel with a small spot of light at the end.”

Gil was diagnosed with chronic myeloid leukaemia (CML) and she was told that, depending on her reaction to her treatment, she might have just weeks to live. “The first treatment made me feel very ill,” she explains. “The shock diagnosis and the toxicity of the drugs meant that I struggled with everyday life and the twice weekly visits to hospital. I was very angry because I had cancer and my Australian dream had been taken away. Why me?”

To help her cope with her anger and all the other emotions that go with the diagnosis and treatment of CML, Gil contacted Leukaemia CARE.

“I was afraid and couldn’t see a future,” reveals Gil. “Leukaemia CARE listened to me and were a huge support. They also helped me help my husband as he was as shocked as I was. We learnt to be there for each other: he is my hero.”

Gil started the drug imatinib as her main treatment and, initially, it worked really well, sending her into remission within three

G A question of controlBeing diagnosed with CML has lead

Gil Goldthorpe to reassess her life and

discover an inner strength

I had to take my CML and make

it work for me

PH

OT

O:

NIC

HO

LAS

RyA

N

repro.indb 10 9/9/10 12:37:09

11

repro.indb 11 9/9/10 12:37:18

Technically speaking

Filtering

the

1�

repro.indb 12 9/9/10 12:37:26

THe sPleenThe spleen is a lymph node – a small ball-shaped organ which is part of the immune system. Lymph nodes are found all through the body and act as filters or traps for foreign particles and help the immune system to work properly. The lymph nodes are found throughout the body and are linked together by lymphatic vessels – thin tubes which transport various fluids around the body.

the Some leukaemia or lymphoma patients might need to undergo a splenectomy. journey looks at the process and its implications

1�

Patients with a blood or lymphatic cancer may need to have their spleen removed. Here we look at the reasons why and what happens following a splenectomy.

The spleen forms part of the lymphatic system. The lymphatic system acts as the body’s drainage network – it balances bodily fluids, acts as a filter and helps the body to fight infections. The spleen is about the size of a small fist and is on the upper left side of the body, above the stomach and under the ribs. The spleen filters and removes old and damaged red blood cells and other foreign matter such as bacteria which helps keep the blood clean and fight infections.

The spleen can become damaged, enlarged or stop working and might have to be removed, particularly in patients with some types of lymphoma and leukeamia. An operation called a splenectomy is required to remove the spleen either through traditional ‘open’ surgery or using ‘keyhole’ techniques.

Removing the spleen means that the patient will be at a higher risk of infection, as the bacteria are not being filtered out of the bloodstream. Some infections the body may still be able to cope with but in some cases serious infections may develop very quickly. Overall the risks of serious infection are low and there are steps that can be taken to help avoid the risks.

sTePs To Takeu make sure that people know that you do not have a spleen, especially doctors and dentists;u carry an alert card or wear an identification bracelet at all times. Splenectomy cards are available from Leukaemia CARE;u you will need to check you have had all the childhood vaccinations and boosters, especially the newer vaccinations, which you may not have received, such as: pneumococcous, hib, meningitis C and influenza. Check with your medical team which ones you need;u you may have to take a low dose of antibiotics for some time after your operation, possibly for life, to help your body

fight infections;u you may need extra vaccinations if you are travelling abroad and also may need to take additional precautions in some countries;u if you feel ill, even with something minor such as a headache or a sore throat, you will need to see a doctor immediately, as you may need early diagnosis and treatment;u you will need treatment for any animal bites, especially dog bites, to prevent the risk of infection; andu if you enjoy outdoor hobbies, such as walking or camping, you may need to take extra precautions and keep skin covered by wearing long trousers and long sleeves to reduce the risk from ticks and insects.

repro.indb 13 9/9/10 12:37:28

your time

14

blast in

Over 40 people enjoyed a luxury weekend away in Birmingham at Leukaemia CARE’s Weekend to Remember. Patients and their families had applied to take part as an opportunity to escape from their cancer journeys and to enjoy some special time together.

The weekend began on the Friday evening when families joined a relaxed drinks reception with the Leukaemia CARE team on arrival at City Nites. Guests were able to take advantage of their luxury accommodation in the heart of Birmingham, provided by City Nites, and all the children at the weekend received hand-made quilts courtesy of Project Linus (see news pages for further details).

After a complimentary breakfast on Saturday morning, families had been able to choose from a range of activities and went off to enjoy visits to Cadbury World and the National Sea Life Centre – where much fun was had by all, particularly with a talking turtle!

In the afternoon some families took a trip to the theatre to watch Joseph and his Amazing Tecnicolour Dreamcoat at the Birmingham Hippodrome. Other families enjoying the weekend decided to take advantage of the fantastic retail therapy on offer at the Bull Ring Shopping Centre.

Saturday evening was time to ‘dress to impress’ for an exclusive dinner at Birmingham’s Hyatt Regency Hotel. Guests were greeted with a champagne reception followed by an intimate dinner held in a private suite at the hotel.

Having a

Leukaemia CARE patients and their

families had an amazing time at their VIP

Weekend to Remember in Bimingham

repro.indb 14 9/9/10 12:37:31

1�

blast in Birmingham

a PaTienT’s PersPeCTiVe“I would like to say a big thank you for the great weekend I just enjoyed in Birmingham after winning the competition for the VIP weekend to remember.

My husband and two children came with me to Birmingham and my son, who is three-years old, loved his visit to the Sea Life Centre on Saturday and really enjoyed staying at the hotel. My little girl is just four-months old so I dont think she will remember our visit.

There were two beautiful blankets waiting for my children and they both love them so much you have to prise them away from them to wash them. We were greeted by a bottle of rosé wine and box of chocolates, which my son ate most of…..

On the Saturday night both children

stayed with their nan and grandad, while my husband and I enjoyed the beautiful meal at the Hyatt Hotel. We also met Dwight yorke and David Moyes (Everton manager) as they were staying at the hotel. I was very excited about meeting the celebrities.

The following morning we enjoyed the open-top bus tour around Birminhgam. My son joined us for the trip as he loves buses. It rained a little but it didn’t spoil a thing.

Most of all, the Leukaemia CARE staff, were amazing, they were caring and friendly. We had a great time with them and made some really special friends that weekend. Thank you for giving us such a memorable and amazing time.”

Victoria contributed the story.

repro.indb 15 9/9/10 12:37:35

FIONA BOWMAN: DIAGNOSED WITH ALL IN 198� WITH THREE FuRTHER LEukAEMIA DIAGNOSES, INTERvIEWED IN SuMMER �009

Once told that she could never have children, Fiona recently celebrated the second birthday of her first son, Leo, and is delighted to be expecting another baby later this year.

“Despite the doctor’s predictions, our 20-week scan showed that it’s another boy and we are both really pleased,” says Fiona. “I’ve also set up my own business – selling my handmade jewellery which is great.”

During her pregnancy Fiona has stayed on the same medication that she’s been on for several years, however, that’s all set to change too.

“My doctor is hoping to change me to a new drug after the birth of the new baby. Hopefully, this wiil have a more dramatic effect on the remaining leukaemia cells and clear them out altogether,” explains Fiona.

16

journey’s return

Leukaemia CARE’s patient and carer stories are

always inspirational. We catch up with four of our

interviewees to find out how their lives have changed

since we last spoke to them

repro.indb 6 9/9/10 12:37:46

1�

BEv FOx: CARER FOR TWO HuSBANDS WHO DIED OF CANCER, INTERvIEWED IN SPRING �008

LyNDA WATT: DIAGNOSED WITH HODGkIN’S LyMPHOMA IN �004, INTERvIEWED IN AuTuMN �009

“I feel 100% more positive now.” says Lynda. “Having hodgkin’s made me reassess everything about my life.”

After her diagnosis, Lynda discovered a love for the outdoor life. She goes biking, has undertaken the 190 miles St Bees to Robin Hood Bay coast to coast walk, has taken up skiing and intends to run in the London Marathon next year alongside her two brothers. “I think they’re coming with me to make sure I get over the finishing line – even if it means carrying me,” she jokes.

Lynda also believes that her diagnosis has given her a better understanding of how to help the patients she looks after in her job as

PETER BORASTON: DIAGNOSED WITH MANTLE CELL LyMPHOMA IN 1999, INTERvIEWED IN SPRING �008

Once told that he could only expect palliative care, Peter very unexpectedly went into remission following treatment and has made sweeping changes to his life since our last interview.

Peter has retired from the navy, set up his own company, returned to visit the Falklands where he was once based during his naval career and has accompanied a diving expedition to Cornwall. “After my trip to the Falklands I felt so well. Lots of exercise and fresh,

care manager. “I feel that I’m much more empathetic now,” she explains.

Lynda’s empathy has reached out to help children affected by the Chernobyl disaster of April 1986. “I decided to have two children, aged eight and nine over from the Ukraine to stay with me this year. It was absolute mayhem,” she laughs, “but one of the best things I’ve ever done.”

Lynda has since paid for the children to come back for another holiday and visited an orphanage in the Ukraine in August. “It was a huge adventure and both heartbreaking and rewarding,” she says. “I’d never have attempted anything like that before I was ill so, I can honestly say, that having hodgkin’s really has changed my life.”

clean air worked wonders. The fact that I could do some of the things I did eight years ago was a great morale boost.

“I obviously lost a lot of weight and strength when I was ill so I’m now working at building muscle bulk and putting on weight,” he explains.

Looking forwards Peter, a huge fan and supporter of Leukaemia CARE, hopes to continue to work with the charity and also get involved with NICE panels. “I’ve sat on one patient panel which was really interesting – working with NICE would be the next step and help me to give something back,” he adds.

Bev’s last interview focused on how she had managed to get her life back on track after caring for and losing two husbands to cancer. Last year she suffered a stroke which, she says, made her reassess her life.

“I’ve made a complete recovery but it really made me think about my future,” explains Bev. “I’ve always wanted to be a counseller so I decided that it was time to get on with training to be one.” Bev is now on level three of a counselling course at her local college and will start a two-year diploma next year.

Bev also married Geoff earlier this year. “I got married again on 24th April in Llandudno which was just fantastic,” she recalls. “Two friends run a hotel and organised the reception for us – we took our guests there in a vintage double decker bus.”

Bev became involved with Leukaemia CARE when her second husband became ill with leukaemia. And although her stroke interrupted her valuable work on Leukaemia CARE’s CARE Line she is about to start volunteering again. In fact, there must be something in the genes as her elder son, Guy, is also an ardent supporter of Leukaemia CARE, raising sponsorship money through running for the charity and taking part in a sky dive.

“My two sons, A-Level results permitting, will be going university in September and my daughter will start a performing arts course. So this year will see even more changes for all of us,” says Bev.

repro.indb 7 9/9/10 12:37:54

Imagine the feel of the desert underfoot,

surveying landscapes stunning beyond your wildest expectations and dramatic sand dunes as far as the eye can see. Trekking the Sahara Desert will provide you with an unforgettable experience.

The nine-day trek starts at the edge of the desert in Morocco where the camels are loaded to carry the luggage and consists of between three and six hours of walking every day and sleeping under canvas at night. You don’t need to be an athlete or

The trip departs on 12th March 2011. The deposit is £299 with a minimum sponsorship level of £2,000.

save lives

super fit to take part in the adventure but you will be trekking on sometimes tough, uneven terrain in hot

weather conditions so it’s vital that you train to get the most out of the challenge. The trek takes in L’erg Zaher, the highest dunes in the region, and there are mirages as far as the eye can see; the contours of the Hamada du Drâa become blurred in the heatwaves. The trip also includes a visit to the world heritage site of Ait Ben Haddou, the ancient Kasbah, which has been a backdrop for many films including Gladiator.

Sahara Trek

A trek in time could

Tempted to do something really extraordinary as a fundraising challenge? Leukaemia CARE has two

amazing trek opportunities that combine the adventure of a lifetime with raising funds for the charity

In focus

18

repro.indb 18 9/9/10 12:37:56

It’s that time of year again – time to dust down your Santa suit and join in the Leukaemia CARE Santathon. This year we are holding two Santathon events in Worcester and Dagenham and hoping that more people than ever will take part. The entry fee is just £10, which includes a free Santa suit but we ask everyone to raise a minimum of £25 in sponsorship as the entry fee only covers our costs. Just ring the fundraising team for details on 0845 521 3456.

But don’t worry if you aren’t near enough to take part in either of the above events as this year Leukaemia CARE is also running the new Mini Santathon.

Mini Santathon is a really easy way for running clubs and other groups to raise money for Leukaemia CARE this Christmas. Just follow our simple three-point plan:

1. pick a date in December and let us know when it is;2. run, walk or toddle dressed as Santa or wearing a Santa hat; and3. give a donation to Leukaemia CARE.

Leukemia CARE is offering an amazing opportunity to join a 10-day trek taking in the exotic sights of the

remote Lares region of the Peruvian Andes.From your start point in Cusco you will trek remote Andean

trails, visit local villages and Incan ruins. Acclimatisation time is built in so you can get maximum enjoyment as you experience breath-taking sights and witness Peruvian culture first hand. Included in the itinerary is a visit to a traditional Andean village, and the must-see archaeological wonder that is Machu Picchu, one of the most important historical sites in world heritage, which you will have time to discover along with the more modern city of Cusco.

As the majority of the trip takes place at an altitude of over 4,400 metres and along mountain trails it is an incredible route. Your kit bag, water and food are taken care of by porters to ensure that your full concentration is on the challenge ahead and that you enjoy every aspect of the trek. You’ll be staying three nights under canvas along the route with the rest of your time in two to three star hostels and hotels.

The next trip departs on 28th April 2011. You need a deposit of £349 and a minimum fundraising level of £3,400.

For full details of these exciting opportunities contact our Fundraising team on 0845 521 3456.

There’s a Santathon for everyone

Peru Trek

19

repro.indb 19 9/9/10 12:37:59

I bruise easily

Your legacy could give me and thousands of others the strength we need

Your legacy will help us to

provide vital care and support

to patients and their families

when they need it most

Please suPPort us in Your willone Birch Court, Blackpole east, worcester, wr3 8sG 24-hour Care line: 0800 169 6680 www.leukaemiacare.org.uk www.raise4leukaemia.org.uk

20.OBC.indd 20 9/9/10 12:43:15