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lymphoma
ISSUE 121 AUTUMN/WINTER 2021
matters
6 Vaccinations
and boosters 9 for Lewis
Sophie cares
16 cancer-related fatigue
Physical activity and
22 be able to claim
Benefits you may
26 Causes and
risk factors 32 Clinical
update
trials
Contents
Lymphoma Action is the UK’s only 4 Latest news
Current news and
21 Christmas
Thinking about
charity dedicated to lymphoma, the developments others
fifth most common cancer in the UK,
and the most common among young
people aged 15 to 24. We’ve been providing 12 Fundraising
Take on a running
30Personal story
Gerry shares
in-depth, expert information and a wide
range of support for 35 years, helping challenge his story
thousands of people affected by lymphoma.
Our work drives improvements in the
diagnosis, treatment, and aftercare 14 Personal
Surinder’s
story
34Services
Here to
of lymphoma. We’re here for you. lymphoma support you
Views expressed are those of the contributors. experience
Lymphoma Action does not necessarily agree
with or endorse their comments.
© Lymphoma Action 2021.
For further information about permitted
use of our materials, please refer to our website.
Editor: Anne Hook
Cover: Surinder, who shares her lymphoma story on page 14.
To make a comment, to sign up,
or to unsubscribe to the magazine,
telephone 01296 619400 or email If you would like to make a donation
publications@lymphoma-action.org.uk towards our work please:
Visit lymphoma-action.org.uk/Donate
Call us on 01296 619419
Lymphoma Action
3 Cromwell Court, New Street, With thanks to AbbVie, Kyowa Kirin, Takeda, Bristol Myers Squibb and
Aylesbury, Bucks HP20 2PB. Incyte Biosciences UK Ltd for funding this issue of Lymphoma Matters.
www.lymphoma-action.org.uk As per our policy, they have no
Freephone helpline 0808 808 5555 influence over our content.
Lymphoma Action is a registered charity in England and Wales (1068395) and in Scotland
(SC045850). A company limited by guarantee registered in England and Wales (03518755).
To keep up-to-date with developments visit lymphoma-action.org.uk/News
WELCOME
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Dallas (see page 4), and we are excited by the new energy
edition of Lymphoma Matters. she will bring to the charity and our lymphoma community.
You can sign up to regularly Thank you for being part of that community.
receive our magazine at
lymphoma-action.org.uk/
Sign-Up
Ropinder
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Lymphoma Matters Winter 2021 03
Find out more about the Lymphoma Action team at lymphoma-action.org.uk/About-Us NEWS Lymphoma Action welcomes new Director of Services We are delighted to welcome Dallas Pounds as our Director of Services at Lymphoma Action. Dallas joins Lymphoma Action after eight years as Chief Executive of Royal Trinity Hospice. She has also worked as an Executive Director at The Terence Higgins Trust, and is a nurse by background, having worked in the NHS for 25 years before joining the charity sector. ‘I am very excited to be joining Lymphoma Action, and supporting the charity in delivering and developing services that support people living with lymphoma and those close to them’ says Dallas. ‘I worked as a nurse in haematology many years ago, so I am really looking forward to being part of this great team who provide such vital services to people affected by this type of blood cancer.’ ‘We are delighted that Dallas is joining our Senior Management Team’ adds Ropinder Gill, Chief Executive. ‘It’s really exciting to have someone joining at this time who has so much experience within the NHS and the health sector, and who shares the Charity’s commitment to delivering inclusive services.’ Spring prize draw Our 35th Anniversary Prize Draw took place on 1 September. Congratulations to the winners, and many thanks to everyone who took part. Your money goes towards supporting people affected by lymphoma. The full list of winners can be seen at lymphoma-action.org.uk/PrizeDraw 04 Lymphoma Matters Winter 2021
To keep up-to-date with developments visit lymphoma-action.org.uk/News
NEWS
Get involved in
The National COVID Cancer Survey
The National COVID Cancer Survey is measuring COVID antibody levels in people with
cancer to find out more about what level of antibodies is enough to provide protection
against COVID-19.
You can sign up to take part if you live in
England and you’ve either been diagnosed
with cancer in the past year, or you are
being treated for cancer. This includes
people on maintenance therapy.
If you are eligible, you can sign up online
at covidcancersurvey.uk You will be taken
through to the NHS Test and Trace website
to order an antibody testing kit free of
charge, which is sent to you in the post
with instructions. You send your sample
back to a lab to be tested.
As well as measuring your antibody levels, the survey will use information from NHS
databases to monitor the outcomes of people with different antibody levels. This will
help find out what level of antibodies is enough to provide protection against COVID-19,
so that doctors can advise people with cancer on their individual level of risk and what
precautions they might need to take.
Sign up at covidcancersurvey.uk
The Lymphoma Action range of books
Don’t forget we produce a range of 16 books
that are available to download or order for free.
Our books are written for people with lymphoma,
and their families, friends and carers, to help
them better understand their diagnosis,
treatment and life beyond lymphoma.
Download: lymphoma-action.org.uk/Books
Order a copy free of charge:
lymphoma-action.org.uk/Shop
Lymphoma Matters Winter 2021 05
ASK THE Find out more about vaccinations at lymphoma-action.org.uk/DayToDay
EXPERT
Update on vaccinations
and boosters
The annual flu jab You need to be vaccinated every year as
The flu vaccine is given free on the NHS each year’s vaccine is developed based on
to people who meet any one of a number the virus strains experts think most likely to
of qualifying conditions. The list includes be around in the coming year.
people over 50, frontline health, social care
workers and people with certain health If you are attending hospital regularly for
conditions, which includes lymphoma. treatment, you may be able to have the flu
jab there; otherwise ask your local GP surgery.
You are recommended to have an annual The flu vaccine does not contain live virus,
influenza vaccine or ‘flu jab’ if you have so you cannot catch flu from having the jab.
lymphoma, if you have had your spleen
removed (splenectomy), or if you are having Important advice:
chemotherapy, steroids or radiotherapy. Aim to have the flu vaccination before you
These can suppress your immune system, commence treatment.
making you more vulnerable to flu. People If on treatment, ask your medical team
who are in close contact with you should about the best time to have the vaccination.
also have the flu jab. If you have had a transplant, you should
receive the flu vaccination 6 months
The timing of the flu jab is important. Ideally post-treatment and annually thereafter.
people should have this before they start Some children have the nasal flu vaccine.
treatment, because once on treatments This is a live vaccine so you should avoid
such as rituximab, some evidence suggests children who have had it for 2 weeks
that the flu vaccine is not as effective. following their vaccination if your immune
system is weakened.
06 Lymphoma Matters Winter 2021
Our freephone Helpline is here for you: 0808 808 5555 (Mon-Fri, 10am-3pm) ASK THE
EXPERT
Third dose of COVID-19 People who had high-dose steroids in the
vaccines for people with month before their initial COVID-19
vaccinations.
severely lowered immunity
The Joint Committee on Vaccination and
GPs and hospital specialists will identify
Immunisation (JCVI) has recommended a
those eligible for a third dose. If you are
programme of third COVID-19 vaccine doses
eligible, you should have got a letter from
for people who had severely weakened
your hospital specialist or GP telling you how
immune systems at the time they had their
to get your vaccination. If you think you are
initial vaccine doses, as they may not have
eligible for a third dose and you haven’t
responded to vaccination as well as others.
received a letter, contact your hospital
specialist or GP for advice.
Those eligible for a third dose include many
people affected by lymphoma:
Am I likely to respond to a third dose
People with Hodgkin lymphoma or high-
if I didn’t respond to the first two?
grade non-Hodgkin lymphoma who were
Clinical trials are looking into this at the
on treatment or within 12 months of
moment. Early evidence suggests that some
achieving cure at the time they had their
people with lowered immunity have an
initial COVID-19 vaccinations.
improved immune response after third
People with low-grade non-Hodgkin
dose of COVID-19 vaccination. However,
lymphoma or chronic lymphocytic leukaemia
some people still may not respond. It is
(CLL) who were under follow-up at the
important to keep taking precautions to
time of their initial COVID-19 vaccinations.
reduce your risk of developing COVID-19.
This might include some people on active
monitoring (watch and wait), if their
Is this the same as a booster dose?
immune systems are severely weakened.
Not quite. Booster doses aim to help your
Specialists will consider the individual
immune response to vaccination last as long
circumstances to decide whether or not
as possible. This programme is called a ‘third
people on active monitoring are likely to
primary dose’ and aims to improve the initial
need a third dose.
response to vaccination in people who may
People who had a self (autologous) or donor
not have responded well to their first two doses.
(allogeneic) stem cell transplant in the 2
years before they had their initial COVID-19
vaccinations (or more than 2 years for people The COVID-19 booster
who are still immunosuppressed or have vaccination
graft-versus-host disease). Note: people The government are rolling out the booster
who had a stem cell transplant or CAR programme and you can book your COVID-19
T-cell therapy after their initial COVID-19 booster if you have been contacted by the
vaccinations should be completely NHS and are aged 50 and over or are aged 16
revaccinated 3 to 6 months after treatment. and over with a health condition that puts
People who were on immunosuppressive you at high risk from COVID-19. You’ll only be
chemotherapy or radiotherapy at the time able to book an appointment for a booster
of their initial COVID-19 vaccinations or dose if it’s been at least 6 months since your
within the previous 6 months. 2nd dose of the COVID-19 vaccine.
Lymphoma Matters Winter 2021 07
ASK THE For up-to-date information on COVID-19 see lymphoma-action.org.uk/COVID19
EXPERT
Alternative to the live shingles people with low-grade non-Hodgkin
vaccine now available lymphoma or chronic lymphocytic
The shingles vaccination is recommended leukaemia (CLL) who are under follow-up
for people aged 70 to 79. However, until people who have had a self (autologous)
recently, the only vaccine available in the or donor (allogeneic) stem cell transplant
UK (Zostavax®) was based on a live but in the last 2 years (or more than 2 years for
weakened version of varicella zoster virus people who are still immunosuppressed or
(the virus that causes shingles). This is have graft-versus-host disease)
not suitable for people with low immune people who have had immunosuppressive
systems because it could cause shingles chemotherapy or radiotherapy in the last
infection. 6 months
people who have had moderate-to-high-
dose steroids for more than 10 days in the
From 1 September 2021, a vaccine called
past month.
Shingrix® became available for people with
lowered immunity. This contains a protein You have two doses of Shingrix®, at least
made by the varicella zoster virus, but it 8 weeks apart, given as an injection. It is a
does not contain the virus itself so cannot one-off course of vaccination, so you do not
cause shingles. need an annual booster.
People aged 70 to 79 who may be eligible for If you are eligible for a shingles vaccination,
Shingrix® vaccine instead of the live vaccine you should be contacted by your GP.
include: However if you are between 70 and 79,
people with Hodgkin lymphoma or high- have not had the shingles vaccine and not
grade non-Hodgkin lymphoma who are been contacted, then get in touch with your
less than 12 months since achieving cure doctor to enquire about it.
Information correct on 1 October 2021.
Check our website for latest updates.
With thanks to Dr Cathy Burton,
Consultant Haematologist at St
James’s University Hospital, Leeds
for reviewing this information.
08 Lymphoma Matters Winter 2021
PERSONAL
EXPERIENCE
Lewis never wanted to
be without my support
Sophie shares her experience of caring heating engineer, we got full time jobs, and
for Lewis, who was diagnosed with spent a year saving hard to turn our dream
high-grade non-Hodgkin lymphoma. into a reality. Yet throughout these twelve
months, Lewis repeatedly became unwell
Lewis and I met online nearly a decade ago, with a series of nasty chest infections. They
before online dating was even a thing. We’ve began with cold-like symptoms but always
both always been strong characters, and manifested into more serious infections; green
although our early stages were turbulent to phlegm, a dry, recurring cough and feeling
say the least, something just clicked. Just so unwell that he missed repeated weeks
six months after meeting, he quit his job, of work, each time taking longer to recover.
left his house share, and moved into my The trips to the doctors mounted up, and
family home. A big part of our fast-paced, he was prescribed course after course of
early relationship was instantly discovering antibiotics. After the fourth trip, we began
many shared interests and a dream to travel. to question what was going on, and wanted
some answers as to why a previously fit,
Having not long graduated from university, healthy, rugby-playing 22-year-old was
and Lewis a newly qualified plumbing and continually becoming so ill.
Lymphoma Matters Winter 2021 09
PERSONAL
EXPERIENCE
Lewis was given a wide variety of diagnoses; We were taken seriously, and Lewis was
from tonsillitis right through to hay fever. immediately sent for an urgent chest X-ray.
Satisfied with none of these, we finally The doctor gave us an envelope with the
managed to get him a blood test at our local X-ray images and told us to go straight to a
doctors’ surgery. The conclusion was that hospital in Sydney where late that night, we
at some point, he had contracted glandular were told Lewis had cancer. Two days later,
fever, as the virus was remnant in his blood we were on a flight back to the UK for him
test results. This discovery was made shortly to begin chemotherapy immediately. After
before we were due to leave for Australia a barrage of blood tests, scans and biopsies,
after a year of saving and planning. he was diagnosed with primary mediastinal
diffuse large B-cell lymphoma, a type of
It’s a very difficult time to look back on, as high-grade non-Hodgkin lymphoma.
we were so full of hope that plenty of sun-
shine and fresh air would improve his health,
and we tried our best to put any worries to
one side. Over the course of three months
spent travelling around in our little campervan,
Lewis displayed numerous tell-tale signs of
a cancer diagnosis, but this was so far off
our radar as two young adults in our early
twenties.
His appetite dwindled – it was 40 degrees,
that’s normal, right? He lost a substantial Our entire lives, plans and dreams felt
amount of weight – lack of appetite, it’s as if they had been snatched from under
boiling hot after all! Night sweats, soaking our feet. Lewis spent the next two years
him through – it’s 40 degrees remember? enduring treatment after treatment, trying
He became breathless, fatigued, his fitness to combat his aggressive form of lymphoma.
failing him. After surfing, he repeatedly We had to watch as our friends and family
complained of tightness in his chest, feeling continued with their lives, whilst our weeks,
as if he was being strangled. It wasn’t until months and then years became a blur of
my mum flew out to Sydney to visit us, that endless days in hospital wards. I felt helpless
reality began to dawn on us all. We had a watching the person I love become a shell
wonderful couple of weeks together, but it of himself; withstanding treatment after
was repeatedly interspersed with her treatment, infection after infection, pain
concerns, and she made us promise to get after pain. It was a lonely, isolating and utterly
Lewis straight to the doctors. She hadn’t numbing time. I felt all I could do was to
seen him for three months, and could see be there for him throughout every second
the drastic difference in his health of every day. As we had both quit our jobs
compared to when we had left the UK. before flying to Australia, I had no other
commitments, so I spent every day by his
We took Lewis to a walk-in doctors surgery side. I never missed a hospital appointment,
in an attempt to finally get some answers. I slept curled up on chairs in A&E, and on
camp beds in his hospital ward.
10 Lymphoma Matters Winter 2021Read When someone close to you has lymphoma at lymphoma-action.org.uk/Books PERSONAL
EXPERIENCE
It was a hard time. It became very difficult
to let other people into the world we were
living in, so we stopped doing so. Lewis rarely
felt well enough to have friends spend time
with him in hospital, and even family visiting
became a rarity as he found it very difficult
to cope with too much noise, or people
asking lots of questions. I’m an inherently
introverted person, so we both lost a lot of
friends during that time. I had no emotional
energy to dedicate to others, communication
was hard; people knew the facts, but had no
understanding of how either of us were feeling.
We were in our own little bubble, hiding
away when things were bad, and putting
on a complete front during any rare social
occasions. Because of this, we were, and It felt as though the universe had gifted us
still are, totally reliant on each other. precious days we thought we would never
A couple that discusses every finite detail, get back. We spent over a year visiting
runs every little thing past each other, every corner of Australia. Lewis bought two
whether we need to or not. In October beautiful surf boards, spent hours in the
Lewis will be five years in remission and water, not once complaining of a tight chest
we are slowly finding independence from or difficulty breathing. We went back to the
each other. walk-in doctors, back to the hospital where
he was diagnosed. We sat in the sunshine,
My advice would be to let other people and took the time to remember all that we
in. It’s a hell of a lot to handle by yourself. had been through; all of the bad, and then
how far we had come; all of the good.
Friends won’t always know what to say,
when to be there, or when to give you We’re back in the UK now, arriving home on
space. Family may not understand when you our own terms this time. We have a beautiful
can’t handle another question, or when you Golden Retriever who we couldn’t wait
wished they had asked about one thing in any longer to be reunited with, and we’re
particular. But nine times out of ten, they now planning what’s next. We’re looking
wish they knew. So try to tell them. for somewhere to settle, somewhere much
closer to our support network this time, but
This June, we returned from 18 months hopefully some place wonderful to bring
spent travelling around Australia and New children into the world. Lewis’ treatment
Zealand. Throughout 2020, in a year where means we aren’t able to do that naturally,
time stood still for so many, and plans and but that means nothing as long as he’s here
dreams were put to one side, we were finally to be a father. We aren’t sure what’s next
living ours. just yet, but we have health and happiness,
and that’s just about all we need.
Lymphoma Matters Winter 2021 11Find out more at lymphoma-action.org.uk/Get-Involved
FUNDRAISING
Wonderful treks
Join #Team Lymphoma for one of our wonderful treks, have a new
adventure and raise money for people affected by lymphoma.
Hebridean Way Adventure – September 2022
This 9-day challenge will give you the chance to experience the unique island environment,
culture and wildlife that makes the Outer Hebrides so enchanting. From Castlebay, Barra
to Stornoway on Lewis, our Hebridean Way trip allows you to discover the best sections of
the full walk in just 9 days! Watch out for eagles, seals and dolphins on your way, as well as
for archaeological remains along the trail. Sponsorship target (covers accommodation and
food): £2,500 Find out more: lymphoma-action.org.uk/HebWay
Our bespoke Kenya Trek in the Great Rift Valley – Spring 2023
Join us and our Maasai guides on the most incredible Kenyan adventure, as we trek for
over 90km across the jagged hills, grassy plains, and awe-inspiring wilderness of the Great
Rift Valley. This is a Lymphoma Action exclusive, bespoke trek with very limited places: join
a handful of other amazing supporters from #TeamLymphoma for this once-in-a-lifetime
challenge! Sponsorship target (which includes all costs): £3,500
Find out more: lymphoma-action.org.uk/Kenya
We can help you with your fundraising. Contact fundraising@lymphoma-action.org.uk
Festive Fashion Day – Friday 3 December
Get on your Christmas jumper, adorn yourself
with tinsel in the office, at school, or with friends
and family and donate to Lymphoma Action.
Why not hold a competition and give a prize
to the most festive? Find out more:
lymphoma-action.org.uk/FestiveFashion
Virtual Santa Run – Sat 4 and Sun 5 December
Be part of something amazing this year and run or
walk 5K at your own pace, in your preferred place
with family or friends to raise much needed funds
for Lymphoma Action at the same time as spreading
festive cheer and having fun! Registration is £5
and you’ll get a Christmas mask and hat. Find out
more: lymphoma-action.org.uk/VirtualSanta
12 Lymphoma Matters Winter 2021Call our fundraising team on 01296 619419 to find out more about getting involved
FUNDRAISING
Our fabulous fundraisers
We are always amazed at our wonderful supporters. Here are just a few of our
fabulous fundraisers and the amazing challenges they have set themselves!
6-year-old Evie running 6
miles to nanna’s house to
raise funds for us
Melinda asked people
to name her gorgeous
kitten
David raised £3,490 by
cycling 355 miles from London
to Paris this September
Alana skydived with
her dad to support
her best friend going
through chemotherapy
Blair and Dionne completed
three walking challenges to
celebreate Blair’s 12 years
being lymphoma-free
Feel inspired?
Check out our website lymphoma-action.org.uk/fundraising-from-home
or contact us at fundraising@lymphoma-action.org.uk or call 01296 619419
Lymphoma Matters Winter 2021 13PERSONAL
EXPERIENCE
Surinder’s
story
Nurse consultant Surinder shares her experience of lymphoma
I am a nurse consultant in primary care. decided to do a biopsy. I also requested that
In November 2018, I noticed I had raised the lumps be removed and checked.
lymph nodes in my neck, and could feel
lumps which felt very small and mobile. At The results of the biopsy suggested I had
the time I thought it was just my lymphatic nodular lymphocyte-predominant Hodgkin
system doing its job. I was also experiencing lymphoma (NLPHL).
dizziness and vertigo, but as I have spondylitis,
which is inflammation in the spinal bones I had a CT/PET scan, which showed I had
or vertebrae, I thought it was as a result of loads of tiny clusters around my collar bone,
that condition. some by my spleen and some in my chest.
My diagnosis was confirmed as NLPHL,
The lumps on my neck didn’t go away, so stage 3S.
I asked my colleagues to check them out.
They said that if they didn’t go after a short
I was shocked at the extent of the disease,
period I should have them investigated. as I had expected just a couple of nodes to
be affected. My husband was with me and
I was referred to ENT (ear, nose and throat) was enormously supportive. The doctor
who thought they were fatty lumps. Although explained that NLPHL was slow-growing
my blood tests were fine, the ENT consultant and that my prognosis was good.
14 Lymphoma Matters Winter 2021Find our more about NLPHL lymphoma at lymphoma-action.org.uk/NLPHL PERSONAL
EXPERIENCE
Telling my family was difficult. We are an For my mental wellbeing I really needed to
Indian family, and I knew some of the family get back to some sort of normality.
would think this would mean the end of my
life. I’m sure other people will identify with One problem I had was that the backs of my
this. We had lost my mum to cancer 2 years legs felt very stiff, something that caused me
beforehand, so I could understand their fears. problems from early on in the chemotherapy.
I needed to tell them at the right time and in As a result I have reduced my hours as my
the right circumstances. We went out for a legs simply won’t make it past 4.30pm.
meal, but all I can recall of that evening was
the tears. So many tears. But in my own mind A year and a half later, I discovered a cyst on
I was convinced I would get through this. my back, which I decided to have removed
because I was having aches and pains more
My consultant explained I would start often. I also had rheumatology screening
R-CHOP chemotherapy straight away, which showed raised markers for rheumatoid
although with this cancer there could have arthritis and connective tissue disease.
been a period of active monitoring (watch I wonder whether these things could be
and wait). Although radiotherapy can be caused by the chemotherapy?
an option for NLPHL, they said it was not
appropriate in my case. As a nurse consultant, I found the
After the first chemotherapy my long dark experience has changed the way I
hair just blew out. For me it really is a major practice in some ways.
part of my identity, and emotionally I found
this really difficult. It was a very clear As a result of my experience, I appreciate
indication of what I was going through – the need to keep people updated regularly
to myself and also to my family. I think I and feel I have a greater understanding of
handled the treatment pretty well, and tried their worries and anxieties. I also have a far
to take a ‘I’ve just got to get on with this’ greater knowledge of lymphoma!’
approach. I was fortunate that I didn’t get
any infections that could have delayed my
treatment and managed to complete the
course of chemotherapy within five months.
After the third chemotherapy cycle the scan
indicated that the lymphoma had all gone.
My consultant said that it was a brilliant
response. I hoped they would say I could stop
the treatment at this stage, but they made it
Photographer: Sam Bagnall
clear I needed to complete the next three cycles.
I knew that would be the case, and part of
me felt very positive, but I can honestly say
that was the longest time of my life.
I finished my treatment in June 2019 and
was back at work the following month.
Lymphoma Matters Winter 2021 15We have more information on exercise at lymphoma-action.org.uk/Exercise
LIFESTYLE
The importance of physical activity for
health, and its effect on cancer-related fatigue
Senior occupational therapist Jennifer Woods and specialist haematology and
oncology physiotherapist Aimee Green talk about the benefits of physical activity.
They focus on cancer-related fatigue, considering exercise and other strategies to
help manage this challenging side effect.
The benefits of physical activity Benefits of physical activity following a
Any movement that uses energy, both diagnosis of lymphoma
moderate and vigorous, improves health. There are many benefits to being physically
Recent guidelines by the UK Chief Medical active, including:
Officer recommend being physically active improved mood
every day, stating that any activity is better reduced anxiety during treatment
than none and more is better still. improved sleep
strengthening bones
If you are not normally physically active, alleviating joint pain.
anything you do will have a huge benefit.
In fact, the greatest benefits can be seen in When is the best time to be active?
people who are not normally active and who We are often asked: ‘When is the best time
start to introduce small amounts of activity for me to start exercising; is it immediately
into their routine. Aim to reduce time spent after diagnosis, just before or during treatment
sitting or lying down with activity, such as or after treatment.’ The answer is: ‘All of those
going into the garden if you have one, or times’. Try and be physically active through-
going up and down the stairs. out the treatment pathway and beyond, as
that way you will get the most benefit.
16 Lymphoma Matters Winter 2021Check out our day-to-day living pages at lymphoma-action.org.uk/DayToDay
LIFESTYLE
At diagnosis If you are normally very Loss of fitness during
When you’re first diagnosed, active, then we advise that treatment, pain, loss of
you may feel you have lost you exercise at a lower concentration, change in
some control. Doing physical intensity during treatment weight, low mood or self
activity can help you prepare because of some of the side esteem or loss of confidence,
physically and mentally, giving effects of treatment. You can make it really hard to do
you back some control. It will can then gradually build it physical activity.
help with your recovery after up again. Depending on your
treatment, reduce side effects treatment, there are some If any of these factors are
or make them less severe, communal activities that preventing you from doing
and improve your mood. you should be careful with exercise, speak to your
at this time, such as going to healthcare team who may
Always talk to your healthcare the gym or going swimming. be able to refer you to
professional about any plans This is because you might services that can help.
to get active before or during have a very low white cell or
treatment. They can give neutrophil count which will
Focussing on cancer-
you advice on where to start. put you at increased risk of
infections.
related fatigue
During treatment Cancer-related fatigue is the
Being physically active Seek advice from your most common side effect
during treatment can help to healthcare professional people with cancer experience,
reduce side effects, such as about any exercises you but it is also the most under
poor appetite, constipation should be avoiding. -reported, despite being so
and fatigue (more on that difficult for many people.
later in the article). It can After treatment
also improve your sleep, There are many benefits to A formal definition of
reduce anxiety and improve exercising beyond cancer cancer-related fatigue is: ‘A
your mood. treatment. Exercise can help common and persistent and
to reduce late side effects subjective sense of tiredness
In addition, it can help to of treatment and lower the related to cancer treatment
build strength, keeping you risk of developing new or or the disease itself and it
physically well during your recurring cancers. It can also usually interferes with normal
treatment. help reduce the risk of other function.’ As healthcare
medical conditions such practitioners, what we often
If you are not normally active, as stroke, heart attack and hear is: ‘I feel like someone
start slowly and gradually. osteoporosis. has pulled out the plug and
It can be helpful to set goals all my energy has gone.’
for physical activity, but it What are the barriers to
is important to keep them physical activity? Cancer-related fatigue is
realistic for you. You know Most of us know that different to tiredness. You
what you can manage and exercise is helpful, but there expect to feel tired after a
if you try to do too much may be barriers to increasing busy day or a late night, but
it will be difficult to stick physical activity, particularly after rest or a good night’s
to. Start very gradually and when you are going through sleep, you regain some of
build up slowly. treatment. your energy.
Lymphoma Matters Winter 2021 17Find out more about cancer-related fatigue at lymphoma-action.org.uk/CRF
LIFESTYLE
With cancer-related A lot of people describe I think if you are scoring
fatigue it can come on all being frustrated because above a 4, then it is time to
of a sudden, without any they expected to return to think about talking to your
warning and it is not the level of activity they had healthcare team about this
alleviated with rest before treatment, but instead symptom, to explore ways
and sleep. cancer-related fatigue is that they can support you.
affecting their ability to do
80% of people undergoing things. Without fatigue, people
cancer treatment, either start the day with their
with chemotherapy or What are the causes of energy levels at 100%, but
radiotherapy in an cancer-related fatigue? as the day goes on the
outpatient setting There are a number of causes, energy levels dwindle. After
experience fatigue. including the lymphoma itself a night’s sleep, the energy
and treatment. It can also levels start at 100% again.
What are the signs? be caused by side effects of
Cancer-related fatigue can treatment, pain, insomnia, Someone struggling with
be present with both physical stress and low mood. fatigue does not start the
and cognitive symptoms. day with 100% energy. They
These include feeling tired Can anything be done about often start at about half
and weary, for some it can cancer-related fatigue? that, and as a result they run
impact on concentration, There is no magic pill that out of energy much quicker.
making it hard to remember can eliminate cancer-related But there are some tactics
things like dates, read books fatigue and sometimes we, to make that reduced energy
or follow instructions. It as health professionals, stretch a little further.
can also have an impact on have to try several different
mood, often making people approaches. Cancer-related The first thing to look at
feel irritable. fatigue can be persistent, but is energy conservation.
there are things that can help. There is a strategy called the
‘Three P’s’, although you’ll
When should I seek help, notice we’ve included four!
and is there anything that
can improve this? 1. Planning
Cancer-related fatigue is Plan your time. You can do
very subjective. People will this on a daily basis, but
experience fatigue in different in our experience it works
ways and it will affect their well to think in full weeks.
lives in different ways too. That way you can include
Think about it on a scale of essential activities, such as
0-10, where 0 is when you have follow-up appointments, as
lots of energy and 10 is when well as activities you really
you are feeling completely want to engage in, such as
exhausted. social events.
18 Lymphoma Matters Winter 2021Find out more about fatigue, nutrition and exercise at lymphoma-action.org.uk
LIFESTYLE
Consider when you have once, so pick an area where There are small changes you
the most energy, and where you can most easily make can make to improve the
you can fit in rest breaks to adjustments, or that you quality and quantity of sleep
make it possible to do the would most like to try. you are having:
things you want to. Also Stick to a routine by going
consider triggers that might Exercise to bed at the same time, and
be making your fatigue As we said earlier, this doesn’t getting up at the same time.
worse. A fatigue diary is a have to be conventional Limit the amount of caffeine,
really helpful tool for this. exercise; it can include sugary drinks, energy drinks
gardening, housework, and alcohol from late
2. Pacing walking, yoga or running. afternoon so your body
Take your time and don’t try Choose something that is isn’t alert in the evening.
to do things at the pace you achievable and will bring Think of the environment
used to; remember you are you the most enjoyment. you are sleeping in; block out
trying to make your energy light or have low lighting.
go further. Nutrition Screens can increase
The nutrients in a balanced your alertness and make it
3. Prioritising diet can increase your energy difficult to unwind, so try to
Think about what you need levels, though we understand eliminate them about an
to do and what you would that if you are feeling unwell hour before you go to bed.
like to do. Are there things or fatigued this may be Incorporate some kind
that can be put off or that difficult. Here are some tips of relaxation into your
you can ask someone else to that may help with nutrition: bedtime routine that works
do? It can be difficult to ask, drink plenty of water for you, such as mindfulness,
but family and friends are consider eating small meals listening to relaxing music
often only too willing to and snacks throughout the or reading.
help. Prioritising can help you day, so you’re not faced
to preserve energy for the with a large meal that There are some useful
things you would like to do. seems unmanageable relaxation and sleep packs,
look at ways of minimising on the NHS website. There
4. Permission the effort of cooking, such are also apps that may be
Sometimes people want to as using frozen vegetables useful, such as Headspace
do things the way they did rather than cutting and and Calm to look into.
before their diagnosis. Give chopping fresh
yourself permission to do consider asking family or
things differently and accept friends to make meals for With thanks to
that it’s OK. Be kind to yourself. you to put in the freezer Aimee Green, specialist
try batch cooking when haematology and oncology
Enhancing your energy levels you have energy. physiotherapist and
There are ways of enhancing Jennifer Woods, senior
energy levels, such as physical Sleep quality occupational therapist
activity, nutrition and sleep. Sleep affects quality of life both at The Christie,
It might be overwhelming to and wellbeing, and disruptive Manchester.
try to change everything at sleep can worsen fatigue.
Lymphoma Matters Winter 2021 19Find out more at lymphoma-action.org.uk/Legacy
FUNDRAISING
Do something wonderful…
Leaving a gift in your will is a simple way to
make a huge impact, as well as a wonderful
way to safeguard our services for the future.
Legacy income has raised over half a million
pounds for the charity. We are hugely grateful
to our past supporters whose legacies have
helped us through the pandemic.
Whatever the size of your gift, your legacy
will make a difference.
What is a legacy or a gift in your will?
After making sure your loved ones are taken care of, you might decide to remember a charity
in your will. There are several types of gifts: a cash gift (or a ‘pecuniary legacy’); a percentage
of your estate (or a ‘residuary legacy’) or a specific gift (like an item of jewellery).
Any gift, even just a small percentage of your estate, will ensure that we can be there to
support people affected by lymphoma – not only those diagnosed, but friends, family and
carers too.
How do I leave a gift?
We strongly advise that you use a qualified solicitor as they will be able to advise on the
legal formalities for making a will as well as tax implications (charitable gifts are exempt
from inheritance tax and can be used to reduce your overall tax burden). Writing your will
doesn’t have to be expensive and you can find a solicitor in your local area.
Further information can be found on the Law Society website: www.lawsociety.org.uk
The most important bits of information to include, if you decide to remember Lymphoma
Action in your will, are our name, address and registered charity number:
Lymphoma Action, 3 Cromwell Court, New Street, Aylesbury, Buckinghamshire, HP20 2PB
Registered charity No 1068395 (England and Wales) SC045850 (Scotland).
Further information can also be found on our website at lymphoma-action.org.uk/legacy
How can I find out more?
If you would like to let us know about your legacy, or discuss leaving a gift in your will,
please contact us on 01296 619400 or email s.knowles@lymphoma-action.org.uk
Corporate Donations
We work with a wide range of companies, so if you know of any opportunities please
let us know, or you can always raise donations during zoom meetings. It’s easy to do –
you just need to download the app at www.pledge.to/zoom-app
20 Lymphoma Matters Winter 2021Remember a loved one at lymphoma-action.memorypage.org/lightastar2021
FUNDRAISING
Light a star this Christmas
The Christmas period is a time to reflect and remember –
light a star for all those affected by lymphoma and help us
shine a light on the UK’s 5th most common cancer.
Remember a loved one and let their memory shine on.
To light a star in memory of a loved one visit our dedication page
lymphoma-action.memorypage.org/lightastar2021
call the Fundraising Team on 01296 619419 or
email fundraising@lymphoma-action.org.uk
Christmas is coming...
We have lots of activities to get involved in this Christmas to help ensure no one has to face
lymphoma alone. Find more information on our website lymphoma-action.org.uk/Christmas
Check out our marvellous Christmas cards, now available to order, and don’t forget when
you are Christmas shopping yourself you can also sign up to support people affected by
lymphoma at no extra cost while shopping online with:
Lymphoma Matters Winter 2021 21ASK THE Find out more about living with lymphoma at lymphoma-action.org.uk/LWL
EXPERT
Photograph posed by model
Claiming benefits for people living with cancer
A diagnosis of lymphoma creates many challenges. Treatment, appointments and
all the information that comes with these things can be overwhelming. Benefits
are not often on the forefront of people’s minds, but a cancer diagnosis can have
a real impact on work and finances. Jagdeep Gill, Lead Benefits Advisor at Maggie’s
Southampton understands that people don’t always know what benefits may be
available for them and acknowledges some people can find it difficult to talk
about finance and benefits. However, she would urge people with lymphoma to
consider these issues early on, as most benefits cannot be claimed retrospectively.
Personal Independence Payment (PIP) You can make the initial claim by calling
Personal Independence Payment (PIP) is a the PIP new claims line on 0800 917 2222.
disability benefit which can help with some You will be sent a form to complete, although
of the extra costs, such as personal care you are likely to have to have a medical
and mobility needs, if you have a long-term assessment before a decision is made.
physical or mental health condition. It is for
working age people (aged 16-67) and is non You will not be entitled to PIP if your
means-tested, which means it does not treatment is over a short period of time, but
take savings, capital or household income people having longer periods of treatment
into account. You cannot claim PIP until or are experiencing long-term side effects
you have a recognised need for 3 months may be eligible. If you are claiming PIP and
and are likely to have that need for another your circumstances change at any time,
9 months. you must report it to PIP on 0800 121 4433.
22 Lymphoma Matters Winter 2021Our freephone Helpline is here for you: 0808 808 5555 (Mon-Fri, 10am-3pm) ASK THE
EXPERT
Disability Living Allowance (DLA) If you are caring for someone who you do
Disability Living Allowance (DLA) is a similar not live with then it is always best to check
benefit to PIP but for children under the age whether it will affect his or her benefits
of 16. From age 16, a young person can claim before making a claim for Carers Allowance.
PIP. DLA looks at personal care and mobility
for children. A form will be sent to you to New Style Employment and Support
complete with some questions centred Allowance (ESA)
around school for example. A decision will New Style Employment and Support
be made without any need for a medical Allowance (ESA) is a sickness benefit for
assessment. people who are ill or have a health condition
or disability that limits their ability to work.
Attendance Allowance (AA) You may be able to get New Style ESA if
Attendance Allowance (AA) is a disability you are unable to work while self-isolating
benefit for people over pension age (aged because of COVID-19. It is a contributory
67 and over). It covers personal care, such benefit, which means you may be able to
as washing and dressing, but it does not
get it if you have paid or been credited with
include a mobility component. It is a non-
enough National Insurance contributions
means tested benefit but to qualify you
over the last 2 tax years before the year
need to have had the care need for at least
6 months. AA is straightforward to claim. you’re claiming in.
You will be sent a form to complete and a
decision will be made without any need for If you have been self-employed, you will
a medical assessment. need to have paid class 2 National Insurance
contributions to claim this benefit. If you
All the above disability benefits are have only paid voluntary contributions, you
disregarded as income for means-tested may not be able to claim New Style ESA. If
benefits and can be paid in addition to you are unsure what contributions you have
other benefits you may be claiming: there made, it is best to apply and The Department
are some exceptions to PIP. of Work and Pensions (DWP) will be able to
check whether you are eligible.
Carers Allowance (CA)
This benefit is for people caring for someone You will have to go through an assessment
who is in receipt of a disability benefit such period where you provide fit notes to the
as PIP, DLA or AA and their award includes DWP. You will then be sent a questionnaire
either the care or daily living components. to complete. The DWP may contact your
You have to spend at least 35 hours a week
doctor or consultant before making a decision.
caring for the disabled person. It is non
means-tested and the amount you can
If you are receiving treatment for cancer,
claim is £67.60 per week. People who do not
have savings or other income may want to you would be found unfit for work. The
apply for the means-tested Universal Credit DWP will place you into one of two groups.
to top up their Carers Allowance.
Lymphoma Matters Winter 2021 23ASK THE
EXPERT
The first group is the Work-Related Activity Other benefits that might be relevant
Group; this element will not entitle you to Pension Credit
receive any additional top-up of money This is a benefit for pension-aged people.
and your contribution-based entitlement It is means-tested, depending on income
will end after 12 months. The Support Group and savings. Pension credit works to top up
is the second element; you will receive an your income; you can backdate a claim up
additional £39.40 per week on top of your to 3 months so long as you have met the
basic allowance of £74.70 per week and qualifying conditions throughout that period.
your contribution-based entitlement will
continue for an indefinite period. Council Tax reduction
This is a means-tested benefit for working
If you are unhappy with which group age and pension age people who are on a
you are placed in then you can look to low income and have savings below a
challenge the decision, but would need certain amount. Each local authority will
to do so within 30 days from the date have a different scheme in place.
of the decision.
Universal Credit
You can claim New Style ESA in addition to PIP. This is a means-tested top-up of benefit or
main source of benefit. It is for people of
Contractual Sick Pay (CSP) working age (18-67; those 16-18 are not usually
If you are employed and have had a cancer eligible). If you are part of a mixed-aged
diagnosis and needed treatment, you may couple, this is where one person is above
be entitled to Contractual Sick Pay, whereby pension age and the other person is below
you can receive full pay for a period (please pension age, you will have to claim Universal
refer to your employment contract for full Credit until both of you reach pension age.
details). If that is the case, that would be Universal Credit has replaced these benefits
your only source of income, although you for most people; Housing Benefit, Income
could potentially claim PIP if you are going Support, Income-based Job Seekers
to be off for a long period of time. Allowance, Income-based Employment
and Support Allowance and Tax Credits.
Statutory Sick Pay (SSP)
If your employer does not pay Contractual Universal Credit can assess whether you
Sick Pay, then they can pay you Statutory are unfit for work in the same way as New
Sick Pay (SSP), which is £96.35 per week for Style ESA. Therefore, if you are self-employed
28 weeks. To qualify your weekly average and not eligible for New Style ESA you can
earnings should be more than £120 per week. make a claim for Universal Credit, depending
If SSP runs out after 28 weeks, or your on household income and savings.
employer is not able to pay SSP, then you
can claim New Style ESA. Sources of help and support
Citizens Advice (citizensadvice.org.uk)
If you are self-employed, the default is New have a breadth of information on benefits.
Style ESA so long as you have paid the right Turn 2 Us (turn2us.org.uk) have an A-Z on
class of National Insurance contributions benefits including a benefit calculator.
(that is Class 2 for self-employed people).
24 Lymphoma Matters Winter 2021For latest news and updates go to lymphoma-action.org.uk/News ASK THE
EXPERT
Entitled To (entitledto.co.uk) have a Wigs
benefit calculator. Synthetic wigs are free of charge on the
GOV.UK pages also have information on NHS in Scotland, Wales and Northern
most benefits and details on how to apply. Ireland. In England, synthetic wigs are free
on the NHS for children, people on certain
How to apply for benefits benefits and people on a low income. If you
If you think you may be eligible for benefits, don’t meet the criteria for a free wig, you
it is best to get a benefit check. Maggie’s might still be eligible for a subsidised wig
Centres, Citizens Advice and Macmillan from your hospital. Ask your nurse specialist
all offer help and support free of charge. for details. You could also speak to
They can also guide you through filling out Macmillan as they have bursaries for wigs.
the forms. There are instructions on the
GOV.UK website on how to make a claim, If you buy a wig privately, you shouldn’t
but they can be quite complex. For Carers have to pay value added tax (VAT). This
Allowance and New Style ESA, you can applies to anyone who has lost their hair
make the initial claims online, but for most because of cancer. Ask the company for a
of the other benefits, you are likely to have VAT exemption form when you buy the wig.
to make a telephone call.
Financial matters (debt management)
With most sickness and disability benefits Citizens Advice can provide debt advice
you will have to complete long forms and can refer you to a team who can go
with questions asking about your needs through options for you, including income
and what you can and cannot do (you maximisation. Government brought into
may have difficulty standing or lifting for force something called the ‘Breathing
example). These can take around 2 hours Space Scheme’ where you can put a hold
to complete, depending on how significant on most creditors for 60 days, with most
your care needs are. Maggie’s, Citizens interest and penalty charges frozen, and
Advice and Macmillan can all help you enforcement action halted. This offers a
fill out these forms. small window of opportunity for people to
seek debt advice.
Other forms of support
Prescriptions Working from home
As someone diagnosed with cancer, Clinically vulnerable people are no longer
you are entitled to free prescriptions. required to shield and can be asked to go
Ask your GP for a medical exemption back into work. Your employer should talk
certificate which will entitle you to free to you about what measures are in place as
prescriptions for 5 years. they have a legal responsibility to reduce
any risks to your health and safety within
Parking charges the workplace.
Many hospitals have parking concessions
for people having cancer treatment. Ask With thanks to Jagdeep Gill, Lead Benefits
your nurse, or the information desk, if Advisor at Maggie’s Southampton for
there are any concessions at your hospital. explaining benefits available for people
living with lymphoma.
Lymphoma Matters Winter 2021 25You can also read
