Magazine Winter 2013 Final

8/9/2019 Magazine Winter 2013 Final

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www.leukaemiacare.org.uk

Scan to visitour website Winter edition

Inside this issue1Benefits advice

1Ask the expert Q & A

1Healthy recipes

us

Three inspiring

case studies



CARE Line 24-hour freephone

08088 010 444Free from landlines and major mobile networks

02

Winter edition

First of all, I’d like to wish you all avery Happy New Year and I hopeyou have enjoyed the festive

period.

Inside this issue, we’ve got somegreat new content for you. We arepleased to tell you about two newregular contributors we have onboard. Clinical Psychologist, Dr.John Donohue will be here everyissue supporting you through thepsychological impact of beingdiagnosed with a blood cancer andwill be inviting readers to write infor future editions and have their

questions answered.Dr. Faye Kirkland will also featurein this and future issues, providinga GP’s insight on issuessurrounding a blood cancer diagnosis. Her first articlediscusses ‘Watch and Wait’.

We’ve also got some greatnutritious, low-cost recipe ideasfrom Can Cook Studio, benefitsadvice from Macmillan Benefits Advisor, Anna Mason, and an

article on tax-effective giving fromLC’s finance team.

The review of existing services,which started with thequestionnaire in the Autumn issue,

is continuing. Our aim is to ensurethe services we provide remainrelevant and continue to meet the

needs of all affected by a bloodcancer diagnosis. We will bepublishing the results of the reviewwhen the consultation process iscomplete.

2014 promises to be a veryexciting year for LC and I wouldlike to say a big thank you toeveryone who took the time tocomplete the questionnaire aheadof our consultation - we really dovalue your feedback and will do

our very best to take your comments and ideas on board.

All the best,Albert PodestaChairman

Welcome to Winter!

Leukaemia CARE’S GovernancePresident: Dr Richard Taylor.Vice Presidents: Professor Alan Burnett. Professor John Goldman. Dr Eric Watts.Professor Andrew Pettit. Professor Alexander Spiers. Dr Philip Darbyshire.Dr Irvine Delamore. Dr Noel Harker. Dr Andrew Hepplestone. Dr Pamela Kearns.

Dr Tim Littlewood. Dr Robert Marcus. Dr Bernard McVerry. Dr Antonio Pagliuca.Mrs Rosalind Ann Ashley. Mr Jason Eliadis. Ms Sheila Hegarty. Mr & Mrs Ives.Mr Roland Maturi. Dr John Rees. Dr Ian Gibson. Mr Chris Matthews-Maxwell.Chairman: Mr Albert Podesta.Vice Chairman: Mr Chris Matthews-Maxwell.Trustees: Mrs Rosalind Ann Ashley. Mr Douglas Moseley. Mr Matthew Jackson.Dr Joanne Norton. Mrs Wendy Davies.Patrons: Mr Gary Lineker OBE. Lady Penny Mountbatten.Mrs Lorraine Kelly OBE (Leukaemia CARE Scotland).

Winter edition

©Leukaemia CARE 2014. Reproduction in any matter, in whole or in part is strictly prohibitedwithout 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 givendoes 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.Registered Charity No. 259483, Scottish No. SC039207

journey is produced by Leukaemia CARE and published by:

T: 01922 423199E: [email protected] www.spectrumbirches.co.uk

24-hour CARE Line08088 010 444Free from landlines andmajor mobile networks

01 The CARE Line is the onlydedicated Freephone service

for people affected by

leukaemia, Hodgkin,

non-Hodgkin and other

lymphomas, myeloma,

myelodysplasia,

myeloproliferative neoplasms

and aplastic anaemia.

You can talk to someone any

hour of the day or night,365-days a year.

Key services

02 One-to-One Phone BuddySupport

03 Patient and Carer

Conferences

04 Website

05 Information and Booklets

06 Web-based Livechat07 Cancer Campaigning and

Patient Advocacy

08 Support Groups


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Winter edition

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 08088 010 444 or email:

[email protected] When you have finished with thismagazine please recycle it.

p.4 Check out all our latest LC News including

our latest booklet soon to be added to our Step-by-Step range.

p.6 Clinical Psychologist, Dr. John Donohue

invites you to send in your questions to beanswered in future issues.

p.8 Charles Brooks shares his story about being

diagnosed with CML, and how running hasbecome an unlikely friend.

p.12 Tales of our fabulous fundraisers who havegone above and beyond to support us.

p.17 Dr. Faye Kirkland talks about watch and wait.

p.18 Can Cook Studio tell us how to cook up some

fantastic recipes on a budget

p.13

p.15

p.21

p.19

p.22

“

”

Without the support from my family,friends, Leukaemia CARE, theLiverpool haematology support groupand the staff at the hospital, I wouldnot be the person I am now.





04

Winter edition C AR E Li ne 2 4 - ho u r f r e e p ho ne F r e e f r o m l and l i ne s and ma j o r mo b i l e ne t w o r k s

0 8 0 8 8 0 10 4 4 4

CARE Line trainingOn Wednesday 11th September we invited our current

CARE Line volunteers to take part in a whole days training

session which was run by the Helpline Association. Fifteen

members came from around the UK to participate in

activities, which would help them to provide even better

advice and support to those who contact our 24-hour

freephone CARE Line. The training session included, a

Q&A session, role-play scenarios and general

reinforcement of the importance of the role.

New patient literatureWe have been working hard to produce another

groundbreaking information booklet in our successful

‘Step-by-Step’ range. This booklet is due to be

launched soon and is designed to provide you with

information about the common side effects you may

experience, what to expect and how they may be

managed. We also supply a wide range of information

on all other blood cancers as well as booklets and

information sheets on a range of issues that can affect

patients. All our patient booklets are accredited by The

Information Standard and can be

downloaded from our website.

Alternatively call 08088 010 444 to

pre-order your free copy or email

[email protected]

York Haematology Support

Group As an acute myeloid leukaemia (AML)patient, Carol Miller felt that a supportgroup was very much needed in Yorkwhere she lives. She set one up inJanuary 2012 and it has the support of Leukaemia CARE, Myeloma UK andYorkshire and HumbersideHaematology Network, based at YorkUniversity. If you live in York and feelyou would benefit from meeting peoplein a similar situation to talk about your thoughts, feeling and emotions, thesupport group warmly welcomesnewcomers on a regular basis.

The group meets at HuntingtonWorking Mens Club in York on the firstThursday of the month from 7pm –9pm. For more information, call 08088010 444.

Nurses Professional

Development DayOn 6th November 2013, we held a

successful Nurses Professional

Development Day at The Worcester

Porcelain Museum with over 30 nurses in attendance. The

event was aimed at providing nurses with the knowledge

to support patients through the cancer journey, specifically

through communication and psychological support.

Feedback from the development day can be found on our

website.

Following the recent conference success, we now turn our

attention to our London Patient and Carer conference, held

on 29th March 2014 alongside the Lymphoma Association.

We will be shortly taking bookings and an agenda will be

uploaded on our website nearer the time, so keep a look

out. For more information, call us on 08088 010 444.

Places are limited, and will be allocated on a first come,

first served basis.



Benefits advice for the

cancer patientBy Anna Mason, Macmillan Benefits Advisor

A cancer diagnosis may mean significant income changes

for the cancer patient’s household; add to this the major

changes (for those of working age) due to effect the

welfare system, and the result can be confusion and

uncertainty. The following article is an overview of

entitlements, and changes where relevant.

For people of working age and in work, a cancer diagnosis

may mean time off work. Rates of contractual sick pay

vary; in some cases this may be the same as normal salary

in which case there will be no additional benefit entitlement.

A fall in wage to statutory sick pay (SSP), however, may

give some benefit entitlement. For those paying rent, you

may be entitled to housing benefit and council tax

reduction. For homeowners there may be entitlement to

council tax reduction. You can find out about these

benefits from your local council. For couples, if both

partners are working and there is a drop in combined

income, another salary coming in usually rules out meanstested benefits. In this situation, the contributory benefit of

employment and support allowance (ESA), may be

appropriate but only when SSP has ended. For those in

self-employment with no SSP, ESA can be claimed as soon

as the individual is not fit to work. Information on this

benefit, including how to claim, can be found on the Gov

UK website. Entitlement to working tax credit (WTC)

may also come in when an individual goes on to SSP, due

to the fall in income (provided the other conditions for tax

credit are met). Further information on tax credits is

available on the HMRC website, but be warned that the

potential risk of being overpaid (and therefore having to

pay back) is quite high given the way this benefit is

calculated.

For those of pension age, the main means tested benefit is

pension guarantee credit; however, the pensions service

will usually inform lower income pensioners of this benefit.

Men can become eligible for pension credit when they

reach the pension age of a woman (so before their state

pension age). It would therefore make more sense for a

single man who cannot work due to ill health to claim

pension credit rather than ESA if eligible. Pension creditalso gives full entitlement to housing benefit and council tax

reduction.

Finally there are the disability benefits of disability living

allowance (DLA) which is being phased out (no new claims

can be made), and personal independence payment

(PIP), for those of working age, and attendance allowance

(AA) for those aged 65 and older. A diagnosis of cancer

alone does not give entitlement, rather the effect of the

illness on a person’s care and/or mobility needs, unless the

claimant meets the ‘special rules procedures’ because they

are terminally ill (with the likelihood that death will occur

within the next six months). These benefits are not taxed

and not means tested. There is a qualifying time period

whereby the patient needs to have had sufficient needs for,

in the case of PIP, three months before the claim and nine

months afterwards, and for AA, six months before hand. So

an individual can become very ill when, for instance,

undergoing chemotherapy and clearly have care needs and

yet not meet the qualifying time period.

Other benefits changes include a benefit cap (of £500 per week for couples and those with children, £350 for single

people), however, receiving certain benefits including DLA

or PIP means that this will not apply (see Gov UK website

for list of benefits excluded from benefit cap). Then there is

Universal Credit which should be nationally in place by

October 2017, but as yet is still being piloted. Further

information on this benefit (which will replace the main

means tested benefits) can be found on the Gov UK

website.

The benefits system remains complex and so it is

advisable to seek specialist advice if you are unsure of

what to claim or of eligibility. The local Citizens Advice

Bureau remains a good first stop or Advice Line for

telephone advice (see Citizens Advice website for details of

number to use). Another online option is the Turn2Us

website which will enable you to carry out your own benefit

entitlement check.

Useful websites

Gov UK www.gov.uk

HMRC www.hmrc.gov.ukTurn2us www.turn2us.org.uk

Citizens Advice www.citizensadvice.org.uk

www.leukaemiacare.org.uk 05

Winter edition





06

Winter edition

Ask theexpertBy John Donohue,

Chartered Clinical Psychologist

I would like to thank Leukaemia CARE for once again

inviting me to contribute to journey. In my last article Iwrote about the psychological aspects of receiving a

diagnosis of a blood cancer and indeed the kinds of

emotions patients may experience during and after

treatment. I recalled that many patients have disclosed to

me in my work as a psychologist that the psychological

and emotional consequences can be very unsettling and

contrary to popular belief, this process can be at its most

challenging in the weeks and months after treatment

completion. Furthermore, I emphasised the importance of

all health care professionals in remaining sensitive to the

demanding tasks of adjustment many patients undergo

and be willing at all times to discuss these important

aspects of patient care.

In a very similar vein, Leukaemia CARE has long

recognised the effects of these difficulties and holds a

history of frequently making space available to patients to

speak of their experiences. In so doing, the forum directly

unifies many patients in the knowledge that their own

private (and often non-disclosed) experiences are often

shared by others facing similar circumstances. I am

confident that many patients derive consolation and

encouragement from the sense that they are certainly notalone in feeling what they feel. The promotion of shared

experience through the publication of personal accounts

particularly in these pages, can contribute to a lessening of

isolation and promotion of psychological health.

In the hope of furthering the awareness of the

psychological consequences of disease, we have thought

about what format could be additionally drawn on to write

about these issues. One way in which we felt might be

helpful is to introduce a Q&A forum which would become a

regular feature within journey. Our aim would be that

readers would send in questions they have about what

they experience psychologically and emotionally which

they feel could be best responded to by a psychologist

experienced in offering support to blood cancer patients.Questions could be about what kind of thoughts or feelings

you have in the aftermath of treatment and how they could

be best addressed, speaking about disease to loved ones

or how to go about getting more face to face support. The

interactive nature of this approach would help us to keep in

touch directly with the thoughts of readers and not stray

too far into the academic.

So, we’d like to take this opportunity to invite you to put

pen to paper or e-mail us your questions about the

psychological aspect of your treatment and/or recovery.

Owing to space, we will not be able to respond to all the

letters but our aim would be to respond to a selection of

letters, which reflect general themes sent in to us. We

hope that the forum will become a much-appreciated

addition to journey and we look forward to hearing from

you.

Please send your questions to:

[email protected] or write to us at:

Leukaemia CARE, One Birch Court, Blackpole East,

Worcester, WR3 8SG



Winter edition

Campaigning and AdvocacyBy Tony Gavin, Director of Campaigning and Advocacy at Leukaemia CARE

An important part of the work we do as a charity involves

campaigning for rights on your behalf. We collaborate witha number of national and international groups, one of

which is Cancer52.

Cancer52 is an alliance of 50+ organisations working to

address the inequalities that exist in policy, services and

research into the less common cancers and to improve

outcomes for these patients.

Cancer52’s Third Annual Briefing was held on October 8th

2013, at the House of Lords. Speakers included:

• Lord Maurice Saatchi

• Mr. Sean Duffy, National Clinical Director for Cancer • Cancer52's new chair, Allyson Kaye

Allyson Kaye, our newly elected Chair, opened the

meeting by thanking all existing supporters of Cancer52

and congratulating the organisation on having built its

presence and voice under the leadership of her

predecessor as Chair, Simon Davies, who has now moved

to the USA to take on a new challenge.

For the future, Allyson said that she saw Cancer52 as a

pioneering organisation able to bring all parts of the less

common cancer community to the table to identify priority

challenges and

opportunities. Shefinished by reiterating

the need for support and

investment in the

organisation to enable

infrastructure build and

policy evolution.

Allyson then handed

over to our Honorary

President, Baroness

Delyth Morgan of

Drefelin. She chaired

and hosted our meetingwhich included a very

lively question and

answer session from

the membership. Topics

discussed included GP

symptom knowledge,

ageism, the need for

innovation within

surgery as well as drug treatment and the potential impact

of Saatchi Bill outside the UK.

Cancer52 is working closely

with the Saatchi Initiative

team as the two organisations

share a common vision of the

Initiative, namely - “innovation in research and clinical

practice that allows people with rare and less common

cancers more choices and better quality of life, towards

their having long and good lives.”

Lord Saatchi is the sponsor of the Medical Innovations Bill,

introduced in the House of Lords in December 2012; and

Cancer52 is the leading alliance of patient support group

charities working in the field, many of who are working

alongside the Saatchi team. At the Cancer52 Third Annual

Briefing, Lord Saatchi presented his initiative to the

members of Cancer52. It was a fascinating and far-

reaching concept, designed to allow doctors to be more

innovative in their treatment approach to patients

diagnosed with cancer.

As part of Cancer52, we have been working with theSaatchi team with a shared vision of need for innovation in

research and clinical practice for people with rare and less

common cancers.

The Saatchi Bill is formally called The Medical Innovation

Bill. It is designed to help doctors develop, so that they can

advance medical science and find new and better

treatments and cures for diseases and conditions including

cancers. Unfortunately, it seems all too likely that the Bill

will fail at its next hearing in the House of Commons.

The new National Clinical Director for Cancer, Sean Duffy,

explained how he saw his role differing from that of his

predecessor, Prof Sir Mike Richards, not least in that he

(Sean) is a clinician, and Mike was a medical oncologist.

He believes that with the new challenges within the new

NHS come new opportunities and listed amongst his

priorities early diagnosis, screening, and reduction in

emergency presentations, survivorship and preventing

ageism, all of which sit very well with the members of

Cancer52. We will be working closely with him to ensure

he stays on-track.

Cancer52 and the Saatchi Initiative





08

Winter edition

During the cold winter months, cross-country trainingwas the norm when rugby was unplayable. EveryTuesday and Thursday I would secretly pray that theheadmaster would stop all sports due to a sudden downpour and that we could do our homework. I wouldtherefore never have believed that come 30 years later Iwould have successfully completed six London

Marathons and more than a dozen half marathonsraising over £50k for leukaemia charities in the process.

My life changed forever on Wednesday 14th September 2005 when I was diagnosed with chronic myeloidleukaemia (CML). In the preceding six months I had notfelt my normal self though had reasons for some, if notall, of my ailments such as weight loss, bruising and legpains.

I was generally a fit person and played a lot of football. Ihad noticed a higher than normal number of bruisesand leg pains. I put this down to my bad tackles and

failing to warm down. I was generally very tired in theevening and would often fall asleep. I put all of thisdown to being the father of two young children andproject managing a large-scale ICT project. I had alsolost four stones of weight in six months and again putthis down to my strict diet of no bread and cutting out alltreats. There were however two ailments that I could notanswer; night sweats and breathlessness.

I had been experiencing night sweats two-to-threenights of the week when I would wake up to find mypyjamas soaking. I was also experiencing

breathlessness when running up a flight of stairs. I didnot have a reason for either ailment and was thereforestarting to have some concerns.

To this day I vividly remember the preceding 72 hours tomy diagnosis. At the weekend I had been celebratingmy brother-in-laws stag party and for some reason I didnot fancy having a drink and was lacking my usual partyspirit. I remember struggling to run up the stairs of thenight club. On the Sunday I spoke to my wife Carol andtold her that something was not right and she advisedthat I went to the doctor. I was never one for the doctor and arranged an appointment for the Monday evening. Ileft work late and remember that I needed petrol beforeI saw the doctor as a petrol strike loomed. By the time I

was at the doctors I was now 15-minutes late and wasgoing to cancel, however something told me to carry on.

I eventually saw the doctor on her last appointment of the day. I went through my ailments and the doctor performed a thorough assessment. She mentioneddiabetes though wanted me to have a full blood test. I

did not like needles. Little did I know, I would soon haveto get used to them.

I got to work on the 15th September at about 11.30 after undertaking my blood test and chaired my usual projectmeetings. I was having a catch up at my desk with threeof my colleagues when my mobile rang. It was Caroland she was in tears. I thought something was wrongwith one of my boys or somebody had died. Instead theresults from my blood test had identified that I waspossibly suffering from some form of leukaemia. My firstreaction was to carry on with the meeting and then seethe doctor tomorrow. Carol explained that was not an

option and that I had an appointment at HillingdonHospital at 16:30.

When I arrived at the hospital I was greeted by a largecontingent of staff with nervous smiles. I was asked toundertake another full blood test and started to askquestions. However, I was told I would see a consultantshortly. At 1700 I went in to a room with a team of consultants. I knew it was now very serious. I wasasked how I had been feeling recently and explainedall my ailments. I was told in a very calm manner that Ihad CML and that was the reason why I had been

experiencing all of these ailments including the dramaticweight loss. My white blood count that should normallybe between 4-11 was 277, my platelets were 492 whenthey should have been 150 and my neutrophils were2.30. This was all new to me at a worrying time, whenless than four hours ago I was at work.

I went very silent and my life started to flash past me.My first questions were how long I had to live, whether Iwould see my boys grow up and how would Carol cope.I then started to look at timescales asking whether Iwould be around for the 2006 World Cup or London2012 as we had just been awarded the games. Whatabout my 40th birthday party in six years time? It isfunny what comes in to your head.

I never enjoyed

running at schoolBy Charles Brooks



Winter edition

The consultants explained that they had to first reducemy counts and then review options. I had so manyquestions, however, it was too early to second guess. Istayed in hospital for four days and thankfully mycounts responded to the treatment and started toreduce. During my stay I started to build up a rapport

with the great staff at Hillingdon Hospital and spent timewith the consultants especially Dr. Richard Kaczmarskiwho to this day has remained my consultant, friend andmentor.

I was recommended to visit the Hammersmith Hospitalon the following Monday. I was still in a state of shock,however after meeting Professor Appleby I was assuredthat everything would be okay provided I listened to theconsultants and stayed away from searching theInternet. A big no-no. This advice has remained with meto this day. Although a bone marrow transfer was an

option it was decided that I should start taking thisgolden bullet drug called ‘imatinib’.

I was given loads of information regarding imatinib andwas warned about the side effects. I will never forgetthe day I took my first tablet. I was sitting down havingdinner with my family and had a pint glass of water (asper the instructions) at the ready. I had eaten about75% of my meal when I took my first tablet andnervously was expecting some reaction. Nothinghappened. For the next 24-hours I was worried that Iwould have some reaction. Nothing happened. After three weeks I had been taking imatinib I was still

concerned. Nothing happened.

I had another appointment with my consultant after three weeks and he gave me the fantastic news thatimatinib was working and my counts were reducing. Iwas delighted. I continued to see my consultant everycouple of weeks and after six months my counts haddropped to some normality. I did though notice that myweight had increased by 10 kilos. One of the maineffects with imatinib was weight increase due toconstantly feeling hungry and also water retention. Myconsultant mentioned to me that I should consider

running. Immediately my mind said no after myexperiences at school. After a couple of weeks I startedto do some long walks and was enjoying it. I felt that if Iwas to start running I would need a goal. What bigger goal could there be than the London Marathon?

I have often read stories of people completing theLondon Marathon against all odds and felt that if theycould do it so could I. I started to enquire and found thatall of the leukaemia charities would offer me a place inconsideration of my circumstances.

I wanted a running mate and approached my best friendof over 30 years Barry to ask him to accompany me onthe 26.2 mile route. Amazingly without hesitation he

said yes. I started to tell friends and family who thoughtwe were mad.

After four months of training we completed our firstLondon Marathon in six hours, thirty six minutes. It wasa slow time however it was a lovely day and one of thehottest on record (our excuse). After my first go at the

marathon I had the running bug and wanted another go.Over the next five years I would successfully completethe London Marathon with my brother Edmond andgreat friends, Justin and Peter. I was able to get myfinishing time down to five hours, seven minutes andeven ran the last marathon dressed up as Batman! Ihave raised £50k for leukaemia charities includingLeukaemia CARE and Anthony Nolan who have beenreally supportive.

Without the support of my family, friends andconsultants, none of this would have been possible and

I would like to say thank you to my lovely wife Carol andtwo boys who constantly keep me busy, my mum,brother and valued friends.

Hopefully I have shown that anything is possible andnow onwards to my next challenge and maybesomething else that I hated at school – cycling….



FundraisingWe receive no lottery or government funding, so rely on our fundraisers to help

us maintain our valuable support to blood cancer patients and their families. If you have raised money for us, thank you! Check out what our fundraisers havebeen doing over the past three months….

10

Winter edition



RideLondon for LC

The ballot may have closed, but we have guaranteed

charity places for the iconic 100-mile road cycle event,RideLondon. Taking place on closed roads on Sunday

10th August, you can be part of the event which is a

modified route of the 2012 Olympic Road Race. If

you’re up for the challenge, you can find out more at

www.leukaemiacare.org.uk/ridelondon

Match funding from Barclays

Five staff members from Barclays bank helped organise

a fantastic fundraising day at The Old Maypole pub in

Hainault, Essex. Barclays kindly match funded the

event, giving a grand total of £5,830 to LeukaemiaCARE.

Thank you to ck Accountants!

We’d like to say a quick thank you to Dudley-based ck

Accountants who chose Leukaemia CARE as their

charity of the year. They have been fundraising in a

variety of ways; from donating the postage saved from

sending Christmas e-cards, asking for donations from

the free seminars they hold and various sporting days

including a charity golf day held back in the summer. In

total, almost £3,000 has been raised for LeukaemiaCARE. Well done everybody!

Something different

If a 26-mile run or a trek up Kilimanjaro isn’t your thing,

why not think about an invigorating sailing challenge, to

raise money for charity? The Good Cause Sailing

Company (TGCSC) offers a number of challenges from

the 24-hour Endurance Challenge to the Trans Atlantic

Adventure. Sailing offers a new and exciting challenge,

for current, dormant or new fundraisers and sponsors

will be more likely to sponsor you for something newand challenging.

Community fundraisers making a

difference

Our community

fundraisers are always

going the extra mile to

do amazing things for

Leukaemia CARE. Over

the last few months,

we’ve had excellent

donations coming in,

including: £1,000 from

The Cotton Scatterers

(patchwork and quilting

group), £1,425 from

Strathaven Bowling

Club, £1,000 from

Calendar Girls

productions and an

amazing £2,000 fromCML advocate, Nigel

Deekes, following his

charity squash match

with England players!

Thanks for all your support!



Winter edition

www.leukaemiacare.org.uk

Student HubFundraising pack for primary schools

We’ve recently created a fundraising pack for primary

schools to encourage young children to think about

good causes and raise money for charity. There are lots

of ideas for teachers and pupils to get involved in, key

facts about blood cancers and top tips about organising

a fundraising event at school. If you’d like to order one,

or think your child’s school could benefit from one, you

can call the fundraising team on 01905 755977.

Student Volunteering Week

The 24th-28th February 2014 is Student Volunteering

Week. It’s a national week celebrating studentvolunteering and promotes the volunteering efforts of

students across universities and colleges in the UK.

We’ve got lots planned during this week and will be

visiting colleges and universities up and down the

country. More information will be posted on our website

nearer the time so watch this space!

Student Ambassadors

We’re keeping busy promoting our Student Ambassador

Programme to colleges and universities, as well as

encouraging students to get on-board with volunteering,fundraising and spreading the word about Leukaemia

CARE. We currently have a number of opportunities

available for students, ranging from overseas gap year

treks to internships. Our Student Ambassador

Programme is completely flexible and tailored to fit in

with the student’s interests and free time.

Students from Aberystwyth University strikea pose for Leukaemia CARE

A group of students

from Aberystwyth

University held a

charity fashion show

in November to raise

vital funds for

Leukaemia CARE on

behalf of their friend

who was recently

diagnosed with a

blood cancer.

The students, who are

all members of the

University’s Make-up

and Costume Society(AberMaCS), put a

great deal of work into arranging The ‘7 Deadly Sins

and The 7 Heavenly Virtues’ themed fashion event. The

event included a number of activities to appeal to all, as

they put on a day of cake sales, face painting and

games. The event finale was a fashion show, featuring

members of the committee dressed in original costumes

and make-up.

All of their hard work paid off as The AberMaCS

Committee managed to raise a brilliant total of more

than £200 which will be used to support those affected

by a blood cancer diagnosis, like their close friend who

was the inspiration for the event.

For more information on student fundraising,

email [email protected]





Winter edition

The sky is the limit for Laura

As a volunteer coordinator for Macmillan, Laura Dowlingcomes into contact with lots of patients. She listens tothem and hears about their diagnosis and prognosis fromchildren aged 12 to soon-to-be fathers and many more.

It was through communicating and building relationshipswith so many patients and families that she took adifferent approach to life. She no longer felt her life washard, in fact, very much the opposite - she felt extralucky.

Laura decided she wanted to do something completelyselfless and help support those who need it most, like thepatients she talks to at the Macmillan Cancer Centre.

Without hesitation, she signed up to climb MountKilimanjaro in aid of Leukaemia CARE. Since then, shehas taken part in lots of fundraising events to raise vitalfunds towards her pledge. To name a few she has donea 5km Santa Dash, a 26-mile walk over the SouthDowns and even got a close friend to do a sponsoredhead shave.

On October 9th 2013, Laura completed her challenge of a lifetime and reached the summit of Kilimanjaro and intotal has raised a phenomenal £4,700.

Laura’s blogs can be found on our website for inspirational tales of the ups and downs of her adventure.

Fundraiser extraordinaire, Tanya, goes

the extra mileLeukaemia CARE London Marathon runner, Tanya

Dixon, has been extremely busy in the fundraising

department. She has so far raised an amazing £3,400

through a range of events and ideas.

Tanya chose to raise money for Leukaemia CARE as a

friend of hers, Dominic, passed away from leukaemia

13 years ago.

She has organised many events to help her raise

money, getting friends, family and work colleagues

involved. Here are just some of the examples of fundraising events Tanya has done.

A charity raffle, where local businesses donated

prizes. Total raised - £800.

A bed push around town, where teenagers undertaking

national citizenship service helped. Total raised - £600.

A fairy party, where all guests dressed up as their

favourite fantasy

character, Tinkerbell

was popular! Total

raised - £300.Face painting at a

local Halloween

festival. Total raised

- £121.

A date in your

diary, where people

paid £1 per date.

When full a date

was drawn out, the

winner got £100 and

the rest went toLeukaemia CARE.

Total raised - £265.

Tanya still has so

many more

amazing ideas and

with months still to

go before her

marathon journey,

she is sure to raise

a phenomenal

amount.Good luck Tanya!

Fabulous fundraisers

12



Virgin Money London Marathon

13th April 2014

Three Peaks Challenge

31st May 2014

Prudential RideLondon

10th August 2014

Trek Kilimanjaro15th August - 24th August 2014

Happy New Year! Time to sweep up the pine needles,tidy away the decorations and make a New Year’sresolution. You may have already made some personalresolutions, but what about making one that couldbenefit others, as well as yourself?

If you fancy making a worthwhile pact for 2014, howabout signing up for an event of a lifetime to raise fundswhich will help support those with a blood cancer? Only10% of people actually stick to their New Year’sresolutions due to lack of motivation or settingunrealistic targets for themselves. But what better wayto stay motivated than signing up for a once in a lifetime

event and staying on-track with a fundraising target tohelp a worthy cause? If you know you have to do it andyou’re doing it for someone else as well as yourself,you’re more likely to stick to it.

Not only will committing to taking part in a charity eventmean you stick to your New Year’s resolution, but youwill become fitter, healthier, more positive and motivatedas you hit your training and fundraising targets.

Even though community fundraising is a valuableactivity, there are bigger and more exhilarating eventsyou can get your teeth into. The more exciting and

different your chosen event is, sponsors will be moreinterested in sponsoring you for something new andchallenging.

There are events to suit everyone; from the adrenalineseekers who opt for a skydive, to the stamina hungrywho feel more at home running 26-miles in the LondonMarathon and even those who fancy something a bitdifferent and sailing across the Channel.

Signing up for a charity event can be exciting, but canalso seem daunting when you have to juggle a full-time job or studies with training and raising money. JoiningTeam LC will mean that you get support every step of the way; from regular updates, hints and tips, to trainingvests, t-shirts and support materials to help kick-startyour fundraising and ensure it’s a success.

So, if you’re fed up with making empty New Year’sresolutions that are already broken before the end of January, have a go at setting an incredible personalgoal and get yourself involved in a real challenge thatwill not only reward you, but will be helping others too.

Good luck!

For more information about our treks, challenges

and events, speak to the fundraising team on01905 755977 or email [email protected]

www.leukaemiacare.org.uk 13

Winter edition

Make a New Year’sresolution with a difference

Inspirational ideas





14

Winter edition

Taking on life’s challengesBy Stuart Johnston

“Prior to October 2008 I had been leading a very active

life. I was busy working as a HGV mechanic and runninga workshop for Comet plc. I was interested in most

sports, including; motor racing, scuba diving, football

and motorcycles, and I would say I lived life to the full. I

had been suffering with rheumatoid arthritis since 2000,

however this did not limit the things I wanted to do. This

was soon to change.

In November 2008 I attended my usual rheumatology

appointment where my medication was changed from

Methotrexate to a drug called Sulphasalazine. This

change meant I had to have weekly blood tests for the

next two months. Almost immediately, it becameapparent that things were not going quite right as my

white blood cell count started to double every week.

Once my white blood cell count reached 30, my

rheumatologist made a decision to refer me to a

haematologist.

It was only a few days wait until my appointment

however in this time, my white blood cell count

continued to rise. On the day of my appointment, my

white cell count was in three figures. The specialist took

one look at my blood results and swiftly said he would

like to have a look at the bone marrow. I expected him tosay in a few weeks or words to that effect, instead he

said hop onto the bed and we will extract a sample now.

I had to wait a few days for the results where I then

received a phone call from the nurse asking if I could

come in to the clinic the following day. My life stopped,

all rational thought processes I had, ended. This is when

the panic set in, asking myself questions: What if? Why

me? Surely they must have got it wrong or they must

have me mixed up with somebody else?

I will never forget the words the specialist said as weentered the room. The quietness really amplified the

severity of the situation and I sat there holding my breath

waiting for him to speak. This was it, the moment my life

would change based on what he had to say: “I am sorry

to tell you this Mr. Johnston, but the results from the

bone marrow indicate that you have CML.” At that point I

had no idea what that meant, it was only when I asked

what it was that the consultant said: “Chronic myeloid

leukaemia, a form of blood cancer.”

I felt confused and isolated. I didn’t know whether I was

supposed to laugh or cry, the shock was unbelievable,

one minute I have arthritis, the next I have cancer. Whata week! Treatment started immediately and continued

for the next eight weeks until my white blood cell count

came down to 14. My consultant put me onto imatinibtablets, which I started taking on 15th May 2009, with a

daily dosage of 400mg. Over the years, it became

apparent that the imatinib was doing its job very well and

that my CML was well under control.

The side effects of imatinib can often limit my day-to-day

functioning, however, with careful planning I can function

relatively well, with fatigue being my biggest problem. I

continue to remain upbeat and confident about my CML,

trusting my team of specialists to do their job, allowing

me to have a relatively normal way of life with

occasional visits to the hospital for routine appointmentswith Professor Clarke at Liverpool Royal University

Hospital.

After accepting my illness, I decided the time was right

and proposed to my then long-term girlfriend, Marie. On

7th October that year we got married on a cruise liner.

Marie has been my rock throughout my treatment and

continues to support me 100%, making me realise that

although things had been a little uncertain, stability was

gradually returning to our lives.

Just as things were on the up, in November 2011

lightening struck again. I had been experiencing nightsweats and had a gut feeling that something was wrong.

Eventually I noticed a small lump on one of my testicles,

I tried to block it out by saying to myself “it can’t be”, or

“no it’s not possible.” To put my mind at rest I made an

appointment to see my GP, however this was not the

case. The GP said: “You need to see a urologist ASAP.”

Within 10 days I underwent surgery to remove a testicle.

The results came back from pathology with further

problems. I was then referred to an oncologist at

Liverpool Royal University Hospital again called

Professor Clarke; I was beginning to think that everyconsultant in Liverpool had the surname Clarke. I

underwent a CT scan on Christmas Eve to see if the

cancer had spread to my lymph nodes. High intensity

chemotherapy was scheduled to commence on the 4th

January 2012 and a few weeks later, I received a phone

call from my consultant saying he was cancelling the

chemotherapy due to some irregularities, and that I

should go see him to discuss my options.

It turned out that the testicular cancer had been

contained and that treatment could stop for now. He

recommended I be put on a ‘wait and watch’ routine withregular scans to ensure that any changes would be



Winter edition

noted and treatments could be

administered if and when required. All

the facts would suggest the cancer

should have spread; yet the scans

showed the complete opposite.

The lymph nodes that should be

enlarged are normal, whilst the

ones in my pelvis are abnormal

and not associated to testicular

cancer. Typical of my body, I had

to be different.

Throughout all of my

experiences I have managed to

remain focused and accept my

situation as well as being

aware of my limitations. My

family and friends have stood

by me every step of the way,providing vital care and support

when I needed it. They are

amazed at how upbeat I remain

given my situation and are

inspired by my can-do attitude.

Over time I have developed

an interest in psychology

and how the minds works,

so much so that I applied

and was offered a place

as a mature student atBolton University to do a

BSC (hons) in psychology

which started in September

2013.

Returning to education has made me

more confident. Everytime I think of it,

I smile! I am eager to learn and

develop a deeper understanding of

humanity and the implications that life-

changing events have upon an

individual. My intentions for the futureare to try and help make a difference to

others who may face a seemingly

impossible or frightening experience.

Without the support from my family,

friends, Leukaemia CARE, the Liverpool

haematology support group and the staff

at the hospital, I would not be the person

I am now. It is only through my personal

experience and support that I feel ready

and capable to take on life’s next challenge.

Thank you all so much.





16

Winter edition

A simple guide to

tax-effective givingBy Greg Martin, Finance Assistant at Leukaemia CARETax-effective fundraising is vital to the charity sector as it

allows charities to significantly boost their income.

However, according to the Institute of Fundraising,

charities are currently missing out on over £740 million

each year in Gift Aid income alone.

There are many different forms of tax-effective giving (also

known as 'tax-efficient giving'). It can be quite difficult to

get your head around, but whether you’re a fundraiser,

employer or a regular donor, you can do your bit to helpmake your charity gift more efficient.

Gift Aid

The most well-known and utilised relief is Gift Aid. When

you make a donation to a charity, they are able to claim

back the tax that you have paid on the donation – it works

out at 25p per £1 that you give. Your donations are eligible

for Gift Aid if you are a UK taxpayer and you must have

paid an amount of Income Tax and/or Capital Gains Tax for

the current tax year that is at least equal to the amount of

tax that the charity will claim on your donation.

So, if you’re fundraising for a charity, don’t forget toencourage your supporters to tick the Gift Aid box on your

online giving page or sponsorship forms to help you

increase your donation by 25% without costing them a

penny.

Payroll Giving

Payroll Giving is a flexible scheme that enables anyone

who pays UK Income Tax to give regularly and on a tax-

free basis to the charities of their choice

Payroll Giving donations are deducted before tax so each

£1 you give will only cost you 80p and if you're a higher rate tax payer it will only cost you 60p (the taxman pays

the rest!)

Payroll Giving is a valuable, long-term source of revenue

for charities and employees can choose to support any

charity of their choice with a regular donation direct from

their pay. If you want to get involved in payroll giving, it’s

really simple to set up. You just need to speak to your

payroll department at work to get the ball rolling. If your

employer isn’t already part of the scheme, they can

contact us for advice on setting it up.

Gift of SharesInstead of giving money to your favourite charities, you can

donate shares. This is a very tax-effective way to give to

charity and can make a significant difference to your tax

bill. Giving shares can actually cost you less than giving

cash!

There are two types of tax relief that are potentially

available when you donate shares: Income Tax relief on

the value of the shares and exemption from Capital Gains

Tax – both of which can amount to a substantial tax break.

For example, if you pay income tax at 20%, your incometax bill would be reduced by 20% of the value of the gift.

There is an organisation called ShareGift which will

manage your gift on your behalf. They specialise in selling

small, unwanted shares to different UK charities and

provide a significant funding stream for the charitable

sector.

If you decide to donate some shares to a charity, the first

step that you should take is to contact the charity and tell

them about your intention to do so. This will enable them

to make the necessary arrangements for your gift and helpthe transferral go as smoothly as possible.

Legacies

Some people leave a legacy, or a gift to a charity, in their

will. It is one of the more traditional methods of giving to

charity and according to the Institute of Fundraising, UK

charities receive an estimated £2bn from legacies each

year. Legacy fundraising is a very cost effective way for

charities to raise funds and has the potential to create a

huge income stream for the charity. However, legacy

fundraising can be a sensitive subject so if you’re a

fundraiser, you need to ensure you have not put pressureon potential donors. A fundraiser should not give legal

advice and should recommend that a potential donor

seeks independent advice.

Most people simply don’t give to charity solely to receive a

tax benefit. They do it for reasons that are beyond any

monetary value and have their own reasons as to why they

are motivated to raise money or give to charity. However, if

you can accomplish the same charitable objective through

tax-efficient giving, it would make sense to utilise this

strategy.

For more information, [email protected] or call 08088 010 444.



Winter edition

Watch and WaitBy Dr Faye Kirkland, GP

Many people think all forms of cancer are

treated immediately, yet some types of

leukaemia and related diseases are not

treated in this way. Specialist hospital doctors

may decide to undertake an option called

watch and wait. This is also known as active

monitoring or watchful waiting.

This form of management is normally chosen

when the type of disease is known to

progress very slowly even without treatment,

where the disease is stable or known to be

non-aggressive or where patients are well and

aren’t experiencing physical symptoms

resulting from their disease. They are closely

monitored so if this changes, medication can

be given. An example of where this is

commonly used is with chronic lymphocytic

leukaemia (CLL) patients. CLL is often found

in older patients, incidentally, when routineblood tests are taken.

Research shows taking a watch and wait

option is very safe. Patients who are regularly

monitored do as well as those who are given

immediate chemotherapy. An advantage is

that it prevents patients having unnecessary

treatments and potential side effects. In

addition, early chemotherapy can lead to

resistance. This is where the medication may

not be as effective if given on another occasion, when it may really be needed.

Some patients cope well with this treatment

but each person’s response is different. At

such a stressful time, patients often describe

feelings of isolation or anxiety if they are put

on a watch and wait list. They worry this is a

palliative care option, which it isn’t, as active

treatment is given if needed. Concerned

relatives or friends ask why they’re not having

immediate medication, which heightens

patient’s anxieties. In many cases, anxiety

often rises from the terminology ‘watch and

wait’. With this in mind, the phrase active

monitoring is more useful.

If you are having this form of treatment, you

will have regular hospital visits. How often you

are seen depends on how stable your illness

is. The doctor will want to know how you’re

feeling, look at your blood test results, along

with an examination. They will discuss the

results with you, so together you can decide

on the best course of action. Patients will

usually benefit if they keep a record of their

results, so they can keep track of how they

are feeling which in turn can help them to

regain some control. It’s also useful to take

someone along with you, as they often

remember information you don’t. Decisions onyour management plan will also be influenced

by your age and overall fitness. In fact, some

patients will never progress to needing

treatment.

The guidelines around watching and waiting

are constantly being reviewed. New methods

are being developed that enable specialists to

identify which patients have a disease that is

likely to progress, and target this group for

early treatment.

An important message to get across is that

you’re not alone at any stage in your

treatment pathway. Your family doctor will be

copied into letters from hospital care and so

will be aware of your situation. Discussing

concerns or questions about your care plan

with your GP, a specialist nurse or doctor is

vital to alleviate any worries, issues or

concerns you might have.





18

Winter edition

Healthier cooking

on a budgetBy Can Cook Studio

Can Cook is a Food and Cookery Social Enterprise –

set up to tackle the issues surrounding poverty and, in

particular, food poverty. They create sustainable food

businesses; teaching people cookery and life skills,

increasing employability and creating jobs.

We make it our mission to get everyone excited aboutfood and back into the kitchen creating tasty, home-

cooked food for themselves. We want to make good

quality food accessible for everyone, no matter what

their background, income or capabilities. We want to

spread the word that cooking good quality meals from

scratch doesn’t have to cost the earth or take up a lot of

time – we also want to show that home cooking is good

for your health and can be something you enjoy.

Here are our tips for eating well on a budget:

Slow cooking

We are big fans of the slow cooker and we promote it

as a money-saving tool for families or individuals living

on a budget, or for those wanting to make the most out

of the food they buy. It’s great for using up leftover veg

to create tasty soups, stews, curries and more and all it

takes is the time to prepare the ingredients and leave

them in the slow cooker to cook. You can buy slow

cookers for around £15 these days and we really

advocate them as a must-have for your kitchen. If you

live alone, make enough for a few days and freeze your

leftovers. Our chefs are currently developing slow

cooker recipes that will be on our blog soon.

Quick cooking

Now to the opposite end of the spectrum – 30 minute,

quick and easy one-pot dishes are something else we

focus on in our training and we’ve given you a couple of

our favourites recipes to try yourself. Chow Mein and

Bolognaise. The sauces we use in these dishes can be

used with all kinds of ingredients so you can substitute

different types of vegetables or meat, depending on

what you feel like – or whatever you have left at the endof the week!

Make your meals go further

When planning your meals, making big batches of one

staple recipe of bolognaise and adapting it to make

different dishes is a great way of making the most of the

food you buy without having to buy lots of extra

ingredients. For example – the bolognaise recipe on the

next page can be split in two and adapted to make achilli con carne with the addition of kidney beans and a

few spices, or poured over pasta with some grated

cheese and breadcrumbs for a tasty pasta bake. We will

have lots of recipes and ideas on our blog for you soon

so keep an eye out.

Top 5 Tips:

1. Cook from scratch as much as you can. Processed

foods may seem cheap but if you cook from scratch

in bulk and freeze, it can work out cheaper. Use our blog for more recipes and ideas.

2. Don’t buy pre-chopped vegetables – buy individual

vegetables and chop them yourself, it works out a lot

cheaper. You can also freeze any leftovers already

pre-chopped to save yourself time next time you

cook. You can also grate leftover vegetables into

soups/stews to thicken and add in any extra

goodness and flavour.

3. Buy your meat from a butcher rather than pre-

packed chicken breasts, thighs etc. It is a lot cheaper

and can save on waste, especially if you don’t have

many people to cook for.

4. Substitute meat for beans or lentils e.g. in a

shepherds pie – use ½ lentils, ½ mince – this will cut

down on cost and increase the nutritional quality of

the dish.

5. Make a staple recipe or sauce and use it across a

couple of dishes as we have described above with

our bolognaise sauce.

www.cancook.co.uk

www.foodpoverty.wordpress.com

Twitter: @foodpoverty @cancookstudio



Winter edition

Sweet Chilli and Soy Chow Mein

Ingredients

• 1 tbls sunflower oil

• ½ small onion, peeled and sliced

• 50g mange tout, sliced

• ¼ red pepper, deseeded and sliced

• 25g courgettes, sliced

• 3-4 mushrooms

• ½ carrot, sliced thinly into matchsticks

• 1 clove garlic, sliced

• 1 tsp grated ginger

• 50g bean sprouts

• 120g cooked egg noodles

• ½ a cooked chicken breast, thinly sliced (optional)

• 1 tsp soft dark brown sugar • ½ tbls light soy sauce

• 1 tbls sweet chilli sauce

Equipment to use

• A sharp knife

• A chopping board

• A large frying pan or wok

• A large saucepan

• A wooden spoon

• A mixing bowl

• A measuring jug

How to make it......

Step 1 Heat a large frying pan with the sunflower oil until

very hot and add the onions, mange tout, pepper,

courgettes, mushrooms and carrot. Cook for 2-3

minutes.

Step 2 Now add the garlic and ginger and continue to

cook for 1 minute. Add the bean sprouts, noodles

and chicken followed by the brown sugar, soy

sauce and sweet chilli sauce mixture. Continue to

cook for 1 minute.

Step 3 When ready - check for seasoning and add a littlemore soy sauce if needed.

Bolognaise

Ingredients

• 1 large onion peeled and diced

• 1 clove garlic crushed

• 1 large carrot peeled and grated

• 1 large courgette grated

• 100g mushrooms sliced

• 400g minced beef

• 1 can chopped tomatoes

• 200ml water

• 2 tbls tomato puree

• 1 tsp mixed dry herbs

• 1 cube beef stock

• 2 tbls oil

• salt and pepper to taste

serves 4 approx £1 per portion

Equipment to use

• A large pan• A sharp knife

• A chopping board

• A measuring jug

How to make it......

Step 1 Heat the oil in a pan and fry the mince until well

browned, then remove from the pan and set aside.

Drain the oil from the pan leaving about 2 tbls and

add the onions and garlic to the pan and continue

to cook over a medium heat for about 3 minutes.

Step 2 Add the tomato puree and cook for 1 minutebefore adding the chopped tomatoes, water and

stock cube, then bring to a simmer and add the

carrots, courgettes, mushrooms, beef and herbs.

Simmer for 30-40 minutes with the lid off, adding a

little water if needed.

Step 3 When the bolognaise is ready - add salt and

pepper to taste (if its too thick add a little water

and if it is too loose, continue to cook). Serve with

pasta of your choice.

Step 4 If you have any left over you can add a little chilli

powder, cumin and some kidney beans to it andre-heat to serve as a chilli con carne with rice.

Two Tasty Recipes



CARE Line 24 hour freephone


20

Winter edition

Going the extra mileBy Richard Perry

“Cancer has been a part of Richard’s life ever since his

best friend died from leukaemia in infant school at theage of six years. Here, he tells us why he’s more

motivated than ever to raise money for charity.

In 1993, when I was at infant school, my best friend at

the time, Martin Brown, was diagnosed with leukaemia.

This was a huge shock to everyone, including me as I

had never really heard of leukaemia before, let alone

had anyone I know receive a diagnosis. After a heavy

and long-winded process, he eventually responded well

to the chemotherapy and for a while it seemed he was

cured. Sadly though, soon after he was given the all

clear, he died from an infection. It was strange nothaving Martin around anymore, but I eventually came to

terms with losing my friend.

Losing Martin was the first experience I ever had with

cancer, but little did I know, this wouldn’t be the last

time. Just over ten years later in 2004, my father was

diagnosed with suspected prostate cancer. However,

he died in 2008 as a result of a malignant brain tumour,

which he didn't even know he had.

Three years later, in 2011, my mother was diagnosed

with Stage IV Hodgkin lymphoma which meant it wasnot only in her lymphatic system throughout her body,

but also in her bones and bone marrow. By this time

you would have thought I would be able to deal with

receiving the news that someone I know has been

diagnosed with cancer – but it never gets any easier.

My mother is now in remission and is getting on with

her life, living with the effects of intense chemotherapy,

more radiation in her body than normal from lots of

scans and suffering from weak joints and muscles.

Through all of this it's safe to say... cancer is not my

friend.

So, this brings me round to more recent times and in

March 2012, I decided that I wanted to run the 2013

Virgin Money London Marathon in order to help support

all that has happened to me over the years and give

something back to the charities that help people just like

me.

I’ve been a filmmaker since I was young and I strongly

believe in a story’s structure, i.e. a beginning, middle

and end. I decided to start at the beginning and run for

Leukaemia CARE and run in aid of my friend Martin.

After being accepted to run in the race, I was working

harder than ever with my training - running 50-miles aweek through the rain, sun and snow. I was hitting

many half marathons including Marlow, Henley,

Wokingham and Bramley. Sadly though, despite all of

my training and best efforts, it wasn’t my fate to run in

2013.

On March 15th 2013, the Friday of the weekend I was

due to run the Reading Half Marathon (my local town), I

got rushed into A&E after seeing the GP with severe

headaches, memory loss and the inability to read, write

and understand anything anyone was saying. After

having a CT scan and MRI, it was revealed I had anabscess on the left side of my brain (the part that sends

signals of language and memories). My mother tells

me I was like a young person with severe dementia. I

got rushed to Oxford's John Radcliffe Hospital, which,

luckily for me, is one of the best neuroscience hospitals

in the UK. That very same evening in A&E I had

emergency brain surgery and the abscess was

removed. It took me roughly four days after the

operation to fully understand what had happened and

after taking everything in, I realised that what I went

through was actually quite scary.

It's all been a bit touch and go but I'm now back and on

the mend. I underwent a further six weeks of

intravenous antibiotics which I had to take twice daily

through a PICC line in my arm which meant sadly I

couldn’t run and unfortunately I couldn’t take part in

2013 London Marathon the following month.

It was heartbreaking to hear the news as I trained

unbelievably hard and was looking forward to the event.

Running for a cause such as Leukaemia CARE gave

me such a huge amount of motivation as I was running

for Martin, my best friend from when I was little who he

had so much of his life to live.

However, after speaking to Leukaemia CARE and

pleading my case they have very kindly let me run in

the 2014 race. This was fantastic news as I was worried

I'd let all my donors down. Now I’m back on the road

and training hard again.

Hopefully I’ll be luckier this time round and fate will

permit me to run in April. It’s been tough getting back

into it but safe to say I’m more motivated than ever.



Winter edition

If you would like to donate to Richard,

you can visit his online giving page:

http://uk.virginmoneygiving.com/RichardPerry96



CARE Line 24 hour freephone


22

Winter edition

Look Good Feel Better (LGFB) is the Beauty andFragrance Industry’s flagship charity, formed 20 yearsago specifically to help women and teenagers combatthe visible side effects of their cancer treatment.

After the shock of being diagnosed with cancer andstarting treatment, many women struggle with thephysical changes to their appearance. LGFB

workshops help in the most practical and positive way,restoring levels of confidence effectively.LGFB runs free skincare and make-up workshops inover 70 hospital and cancer support centres nationwidehosted by volunteer beauty consultants. After twohours, the group of 12-15 ladies leave smiling and full of renewed self-confidence. Each attendee is given a giftbag of donated products which she is shown how to useby following a 12 step guide, which can then can beenjoyed at home. The LGFB programme is designed toprovide a very natural look suitable for all skin tones.Ladies undergoing cancer treatment understand they

may lose their head hair but to lose eyelashes andeyebrows can simply be too much. Here, LGFB sharessome of the tips and advice about this all important eyearea. The below are taken from the LGFB websitewww.lgfb.co.uk and a full 12 step guide is fullydemonstrated in the LGFB Confidence Kit – a self-helpDVD and booklet which can be used at home.

Concealer For dark areas dot concealer where needed, for example, shadows under eyes. Use your finger tips toblend the concealer, pressing into your skin. A green-based colour corrector can be used sparingly to reducereddening and even out skin tone.Tip: A 'standard' concealer hides dark circles and broken capillaries. A second 'green' concealer can tonedown redness and flushing.

EyeshadowUse different techniques to define and brighten your specific eye shape and colour.Tip: Beauty Advisers are really friendly and experts inmaking the best of your appearance. Have a chat toone in your local department store for their tips for your eye shape and for personalised advice. Use different

colours in a palatte to open your eyes and define theeyelash line.

Eyeliner If you are using a pencil, start by rolling it on the back of your hand to warm and soften it before applying. Thiswill define and shade the eyeline creating theappearance of eye lashes that might have been lostthrough treatment. Draw a thin line along the upper lidand from the centre of the lower lid outwards and softenwith a cotton bud. If you have difficulty doing this, drawdots on the lash-line and then blend with a cotton bud toachieve the same effect.Tip: Eye liner pencils are generally easier to apply thenliquid liners and give a softer finish.

EyebrowsEyebrows frame the face and can help other featurescome to life. A brow pencil or brush can be used tocreate, fill or define eyebrows. Plot the 'three' points of your brow. Use short, feathery strokes along the naturalarch of the brow to create an illusion of hairs and blendwith a brush to soften. You can add more fullness to theinner edge and thin out towards the outer edge.Tip: Choose a shade that is the same colour as, or slightly lighter than, your head hair.

MascaraUse the mascara tip to gentlycolour the lashes of the lower lid first, then use the wholemascara brush to applycolour onto the upper lashes,using a slight wigglingmovement along the lashesto catch all the hairs and toprevent the mascaraclogging.

Tip: Use the tip and full brushto highlight the lashes- they might be light and hardly visible but the mascaracolours the hair that it touches. It’s a good idea to usenon-waterproof mascara that can be removed gently and easily, but if you find that your eyes become ‘teary’ after treatment, waterproof mascara is fine as long asyou remove it gently. For thinning or newly re-growing lashes, it’s best to use non-fibrous mascara as fibrebuilding products are often too heavy for fine lashes.

For information about LGFB, to find a free skincare and

make-up workshop near you or to order the LGFBConfidence Kit, visit www.lgfb.co.uk or call 01372

Face cancer with

confidenceBy Look Good Feel Better



Winter edition

The Trustees Report and Financial Statements for 2012/13

were approved on the 5th October at the AGM. For those

interested, the full document can be downloaded from our website. We are able to report a significant improvement in

financial performance in the year. The surplus generated willbe reinvested into the charity to help provide vital support

services to anyone affected by a blood cancer.

This would not have been possible without the work of our

extraordinary fundraisers, CARE volunteers and staff whohave all worked hard to enable the charity to continueproviding its key services.

In January 2013, we launched our new online livechatservice, providing support during working hours. This

attracted an international audience from the USA, Pakistanand Denmark as well as those closer to home such as

Bristol, Cardiff and Oxford. Although we do not havedetailed information of blood cancer services in other countries, thanks to the work of Tony Gavin, our Director of

Campaigning and Advocacy, we play an active part inworldwide networks of patient advocates who have more

local knowledge. We will always signpost callers as well asproviding emotional support during the call, regardless of where they are from.

We continue to address gaps in knowledge and havepublished two new information booklets in our ‘Step-by-

Step’ range; ‘myelofibrosis (MF)’ and ‘essentialthromobocythemia (ET) and polycythemia vera (PV). Wework closely with clinical nurse specialists (CNS) and

patients to produce accessible information.

Our conferences continue to go from strength-to-strengthand receive positive feedback. Most recently, our Nurse’s

Professional Development Day offered seven hours of accreditation towards their continuing professionaldevelopment.

The combination of medical experts, patient speakers andless conventional sessions such as communication skills

and role play with an acting company or the laughter workshop always proves to be popular.

Other highlights include the launch of Patient Journals inLanarkshire, Forth Valley and Aberdeen as well as our

support group in Worcester which recently celebrated itsfirst birthday. Our advocacy service for individuals hasprovided ongoing support to over 50 patients and carers.

Many thanks to everyone who filled in the questionnaire

sent with the last issue of journey. We aim to build on our achievements and look forward to reporting back on theoutcome of our consultation on services, held this Autumn,in the New Year.

© Brainwarp

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18 19 20

21 22

ACROSS

7 Expressions of love (6)8 The Milky Way (6)9 Fruit (4)10 Misbehaving (6,2)11 One fathom (3,4)13 Handle (5)15 Power (5)

16 Childhood ailment (7)18 Way out of bunker (4,4)19 Filled flat-bread (4)21 Photographic fault (3-3)22 Bramley apple (6)

DOWN

1 Flightless bird (4)2 Part of Kent (4,2,7)3 Breaks out (7)4 Chalcedony (5)5 Actor and director (5,8)6 Apology (6,2)12 Waters off Holyhead (5,3)

14 Salad vegetable (7)17 Impudence (5)20 Experts (4)

C

R O S S W O R D

Looking back, moving forwardBy Albert Podesta, Chairman



WE HAVECHARITY PLACES

AVAILABLE for thePrudential RidelondonSunday 10th August 2014

BOOK YOUR PLACE NOW...leukaemiacare.org.uk/ridelondon

CYCLE THE DISTANCEAND HELP SUPPORT THOSE WITH

A BLOOD CANCER,

PEDAL BY PEDAL.

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