Lymphoma matters - Jamie Beamish shares his experience Active monitoring Wellbeing toolkit Staging of lymphoma
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lymphoma
ISSUE 120 SUMMER 2021
matters
Jamie Beamish shares his experience
Active monitoring
Wellbeing toolkit
Staging of lymphoma
21
Bridges of
8 17
Your guide to
Active monitoring wellbeing Britain is back!
Alan’s story
24 28 Harriet’s experience
of skin lymphoma 30 Clinical
trials update
Contents
Lymphoma Action is the UK’s only 04 Latest
news
14 Personal story
Actor Jamie
charity dedicated to lymphoma, the Current news and Beamish
fifth most common cancer in the UK,
developments
22 Back
and the most common among young
people aged 15 to 24. We’ve been providing
to basics
in-depth, expert information and a wide
range of support for 35 years, helping
07 Lifestyle
Keeping safe
Staging of
lymphoma
thousands of people affected by lymphoma. in the sun
Our work drives improvements in the
34 Services
12 Take on a running
diagnosis, treatment, and aftercare Fundraising How you can stay
of lymphoma. We’re here for you. connected
Views expressed are those of the contributors.
Lymphoma Action does not necessarily agree
challenge
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: Actor Jamie Beamish, who you might recognise from Bridgerton
and Derry Girls shares his Hodgkin lymphoma experience (see 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, Takeda, Bristol Myers Squibb and Incyte Biosciences UK
Aylesbury, Bucks HP20 2PB. Ltd for funding this issue of Lymphoma Matters. As per our policy, they have no
www.lymphoma-action.org.uk influence over our content.
Freephone helpline 0808 808 5555
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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Lymphoma Matters Summer 2021 03
For the latest on COVID-19 and lymphoma see lymphoma-action.org.uk/COVID19 NEWS Lymphoma Action welcomes new trustee We are delighted to welcome Shaf Mansour as a trustee of Lymphoma Action. Shaf recently joined our Board of Trustees, and brings over 10 years of experience in the charity sector. Shaf commented: ‘I’m honoured to be joining Lymphoma Action at this incredibly exciting time as the charity grows from strength to strength.’ Our Chair of the Board of Trustees, Gordon Johns, commented: ‘We have been keen to seek a trustee with digital and ICT strategy experience to support the organisation and help us increase our reach even further. Shaf brings with him of wealth of experience within this area and we are looking forward to working with him.’ Can you help shape future lymphoma research? The University of Manchester/Christie Hospital NHS Foundation Trust Lymphoma Research PPIE Group (EMERGE) are lookingfor ‘experts by experience’ to work with them. If you are a patient or carer of someone with lymphoma, you could help to prioritise research, offer advice as a member of a project steering group, comment on research materials and participate in interviews with If you are interested, please contact Dr Tania research participants. Seale at tania.seale@manchester.ac.uk Have you been treated for Hodgkin lymphoma? Researchers at The University of Manchester are looking for people aged 18 or over, who have been treated for Hodgkin lymphoma. They need participants to review an information booklet about lung cancer screening after Hodgkin lymphoma. Taking part involves an online survey and/or an online focus group. For more details visit engagehl.com or email rachel.broadbent-2@postgrad.manchester.ac.uk Skin lymphoma news Lymphoma Action are proud to be the patient voice in health technology assessments. In skin lymphoma, we were among the organisations who successfully appealed against the decision not to approve mogamulizumab in England, Wales and Northern Ireland. NICE will now review the decision. 04 Lymphoma Matters Summer 2021
To keep up-to-date with developments visit lymphoma-action.org.uk/News
NEWS
Addressing
COVID-19
vaccination
concerns for
people with
lymphoma
We know that people with lymphoma are Most of these people only had one dose of the
at higher risk than other people of becoming vaccine, and we don’t know how a second
seriously ill if they develop COVID-19. This dose affects the antibody response in people
is why they were prioritised for vaccination with lymphoma. It’s important to remember
when it first became available in the UK. that the immune system is very complicated.
However, we also know that people with Antibodies aren’t the only way your body
lymphoma often have lowered immunity responds to vaccination (although they
and might not respond to vaccines as well are the easiest response to measure). We
as other people. don’t know yet how other parts of your
immune system respond to the vaccines, or
Although the coronavirus vaccines have how antibody levels relate to your overall
all been tested in very large clinical trials protection from COVID-19.
involving tens of thousands of people, the
trials didn’t include people with lymphoma. Another study has measured antibody
This means, at the moment, that there responses in people who had their vaccine
is limited information on how well the as part of the UK vaccination programme,
vaccines work in people with lymphoma. rather than a clinical trial. This study included
over 8,500 people. Of these, 74 reported
In April, we reported on the results of a trial that they had blood cancer. The data released
that suggested people with lymphoma have so far does not specify what types of blood
a lower antibody response to coronavirus cancer, so we don’t know how many people
vaccination than the public at large. This had lymphoma. Early results found that
trial included 32 people with lymphoma 70% of people with blood cancer produced
or CLL. Early results suggested that many antibodies within 28 days of having their
people with lymphoma might not make first vaccination. Although this is lower than
sufficient protective antibodies in response in people without blood cancer, it is more
to the coronavirus vaccine, but the small encouraging than some other studies report.
number of people with lymphoma who After a second dose of vaccine, the proportion
took part makes it difficult to draw any of people with blood cancer who had an
firm conclusions. antibody response increased to 80%.
Lymphoma Matters Summer 2021 05
For up-to-date information on COVID-19 see lymphoma-action.org.uk/COVID19
NEWS
People with blood cancer had significantly These aim to find out more about how well
lower antibody levels than people without the vaccines work in people with lymphoma
blood cancer, but we don’t know what this and other blood cancers. These include the
means in terms of the level of protection PROSECO trial, which is looking specifically
against COVID-19. Low antibody levels may at how effective coronavirus vaccination is
still offer useful protection, while normal in people with lymphoma. We endeavour to
antibody levels do not guarantee complete support these trials by raising awareness of
protection against COVID-19. It is important the trial sites (currently Leicester, Norwich,
to note that the number of people with Nottingham, Newcastle, Oxford, Portsmouth
blood cancer in this trial was small, and that and Southampton). The PROVENT trial is
the results haven’t yet been published or looking at whether lab-made antibodies can
reviewed by other scientists. help prevent COVID-19 in people who can’t
have (or don’t respond to) vaccination.
Even if you don’t respond fully to vaccination,
the health professionals we have spoken to It is encouraging that this research is taking
have stressed that ‘Any protection is better place, but it will be a while before results are
than none.’ This is why we recommend the available. We will report results as soon as
flu vaccination every year, even when people we have access to them.
are receiving chemotherapy. However, we know
how anxious you might be about the risk In the meantime, irrespective of your health
of COVID-19, especially if you feel that you status or predicted antibody levels, it is
have little protection even with the vaccine. important to follow the government guidance
and continue to take extra precautions to
Lymphoma Action is working with other reduce your risk of infection. We have more
blood cancer charities and with a broader information in our guidance for clinically
group of charities to keep vaccine efficacy at extremely vulnerable people on our website.
the top of the agenda and put the concerns
With thanks to Consultant Clinical Oncologist
of all of our beneficiaries to the Joint
Dr Eve Gallop-Evans for reviewing this update.
Committee on Vaccination and
Information correct as at 10 June 2021.
Immunisation (JCVI).
Updates are posted on our website regularly.
Prize Draw
Take part in the Lymphoma Action Prize Draw, and help us give much
needed support to people living with a lymphoma diagnosis.
Be in with a chance to win £1,350 or one of our other fabulous cash prizes! Every ticket
bought helps us to continue our work ensuring that no one faces lymphoma alone.
Please visit lymphoma-action.org.uk/PrizeDraw to find out more, call the Fundraising
Team on 01296 619419 or email fundraising@lymphoma-action.org.uk
The draw will take place on Wednesday 1 September 2021.
06 Lymphoma Matters Summer 2021
LIFESTYLE
Keeping safe in the sun
Some treatments for lymphoma can make your skin more sensitive to
sunlight (photosensitive). This includes radiotherapy, many chemotherapy
drugs and some supportive drugs.
Although summer is the time you are most Keep radiotherapy sites covered in the sun.
at risk, it is important to keep safe in the Many chemotherapy drugs and some
sun throughout the year. Even on cloudy supportive drugs (especially some antibiotics
days, it is important to protect yourself and diuretics) can make the skin more
from the effects of ultraviolet (UV) rays. sensitive to sunburn from UV rays.
Use a sunscreen with a ‘sun protection
What are ultraviolet (UV) rays? factor’ (SPF) of 30 or higher and choose
Sunlight consists of UVA and UVB rays. one that protects against both UVB and
UVA rays stay at equal levels throughout UVA rays. The SPF is the level of protection
the year; whereas UVB rays are at their against UVB, while the stars on the bottle
most intense during the summer, around (1 to 5) show the level of protection
midday and at high altitude. It’s UVB rays against UVA.
that causes sunburn. Use clothing to help protect yourself from
the effects of sun such as a wide-brimmed
How can I protect myself from the hat (caps don’t protect your neck or ears),
effects of the sun? and long sleeved shirts and trousers.
The following tips are aimed to help you Wear sunglasses that have a guaranteed
stay safe in the sun, and are especially UV light filter.
important to follow after treatment for
lymphoma.
Avoid being in the sun when the rays are With thanks to Lisa Castallaro, Haematology
at their strongest, between 11am and 3pm. CNS, for reviewing this information.
Lymphoma Matters Summer 2021 07
ASK THE Find out more about active monitoring at lymphoma-action.org.uk/WatchWait
EXPERT
Active monitoring
or ‘watch and wait’
Picture: Russ, on active
monitoring, and his partner
With thanks to Dr Chris Fox, Consultant Haematologist, Nottingham University
Hospitals NHS Trust and the panel of experts who addressed these questions at
a Lymphoma Action and Leukaemia Care joint webinar held in April 2021.
What is active monitoring? Active monitoring or ‘watch lymphocytic leukaemia (CLL),
Sometimes, lymphoma and wait’ is a recognised marginal zone lymphoma and
doesn’t need treatment form of management for some types of mantle cell
straight away. Instead, people some lymphomas, as well lymphoma. These low-grade
have regular check-ups as other cancers, such as non-Hodgkin lymphomas can
with their medical team to prostate cancer. be difficult to cure completely,
monitor their health and to but can often be controlled
see how the lymphoma is When might active for many years, only needing
affecting them. Treatment monitoring be used? treatment from time-to-time.
doesn’t start straight away Active monitoring is
unless the lymphoma begins commonly used for low-grade If you are newly diagnosed
to cause significant health non-Hodgkin lymphomas like with a low-grade lymphoma
problems. follicular lymphoma, chronic that isn’t causing troublesome
symptoms, active monitoring
might be suggested. Your
I had geared myself up for treatment and it going medical team will assess the
away, but that is not the case. It is about finding risk of the disease progressing.
a new way to live my life and learning not to be If they conclude that the risk
fearful of the lymphoma. is low, they are likely to
Abi, on active monitoring for follicular lymphoma recommend active monitoring.
08 Lymphoma Matters Summer 2021
Find out more about our support groups at lymphoma-action.org.uk/SupportGroups ASK THE
EXPERT
Your medical team might CNSs are often the first port people to notice a change
also suggest active monitoring of call for people if they in you, such as a loss of
to give them more time to have questions or want to appetite, reduced energy
assess how your lymphoma discuss any worries they or weight loss, all of which
is developing, and to decide may have. For some people, would be a reason to talk to
on the best approach going their GP may be a key part your medical team.
forward. of their care team, as some
GPs are happy to do blood
If you’ve had a course of tests, interpret the findings
treatment that hasn’t and communicate with the At first, I found it pretty
completely got rid of the haematology team. hard to get my head around
lymphoma, you may go on it. Speaking to people at
active monitoring so that Active monitoring is generally Lymphoma Action Support
your medical team can recommended when the Groups has been invaluable.
monitor your health. benefits of having regular Many have been going
check-ups with your medical through it for years, and
What is ‘active’ about team outweigh the risks their insight really helped.
active monitoring? of being given toxic drugs Russ (pictured opposite)
Active monitoring is a that may not improve your on active monitoring
concept that doesn’t always health. This means that you
sit easily with people, and avoid unnecessary treatment
some people find it difficult and its side effects for as When is active monitoring
to get their heads around it. long as possible. recommended?
It’s important to emphasise Having an accurate diagnosis
that active monitoring is Whilst on active monitoring is critical to getting the right
not ‘doing nothing’. other risk factors, such as individual treatment plan.
Medical teams should explain blood pressure and cholesterol Your medical team will look
it in detail and clinical nurse levels, will be monitored. at a range of clinical variables
specialists (CNSs) are really – including symptoms, blood
important when it comes It is helpful to get family, count and the results from
to communication around friends and carers involved. blood and bone marrow test,
active monitoring. They are often the first if performed.
My clinican felt active monitoring
was the best approach for me
because of the size of the lymph
node, the fact that it is just in the
stomach and it isn’t affecting my
lifestyle. I am physically fit and
well and I still run and exercise.
They explained that while things
are stable and I feel well, it’s best to
leave well alone.
Zoe, diagnosed with follicular
lymphoma in 2021
Lymphoma Matters Summer 2021 09
ASK THE Join the Closed Facebook support group or an online meeting to talk to others
EXPERT
Your medical team will also If you have a low-grade Am I being seen often
look at the results from non-Hodgkin lymphoma enough?
molecular and other (LGNHL), such as follicular People vary enormously;
sophisticated tests. lymphoma or marginal some like the reassurance of
zone lymphoma, your going to hospital frequently,
Clinicians use this information medical team will be looking while others view less
to assess those people at a for changes, such as your frequent appointments as
higher risk, whose lymphoma wellbeing, lumps and bumps, reassuring.
is more likely to progress and weight loss, night sweats.
therefore need treatment Clinicians try to keep hospital
sooner rather than later. For LGNHL, changes in visits and blood tests to a
Active monitoring may be these symptoms are more frequency that allows them
recommended for those at a important reasons than the to detect changes in your
lower risk as their lymphoma results of blood tests in health. However, no matter
is less likely to progress and deciding whether to bring an how often you are having
need treatment. It is a very appointment forward or to appointments, it is important
individualised assessment. indicate that a scan is needed. to emphasise that if you
This is because LGNHL blood have any concerns between
Individual blood cancers tests can be normal, even if appointments, you should
have national and international the disease is progressing. get in touch with your medical
guidelines. Active monitoring team. The chance is that if
is a recognised pathway It is important for people to something is going to change,
within these guidelines, understand their condition it will happen between
which include how to make and be engaged in their own appointments.
an accurate diagnosis, how health. Clinicians rely on
to accurately assess the people reporting changes In rare cases, there can be a
risk to a patient and how to in their health, and people rapid significant change in
decide on active treatment should be aware of potential someone’s health, but in most
versus active monitoring. symptoms and problems to cases where someone is on
look out for (see end of article). active monitoring, change is
How can I be pro-active? It can be useful to note any gradual. Your medical team
Although the principles of symptoms – in a diary, on a will tend to arrange hospital
active monitoring are similar chart or an app – to help you appointments based on how
across the range of blood to detect if symptoms are they understand your disease
cancers, it can vary depending worsening. Having said that, is behaving. After diagnosis,
on your type of lymphoma. it is important not to be too or after completing treatment,
For example: obsessive either – over time you are likely to be seen
If you have chronic most people find a happy more frequently.
lymphocytic leukaemia medium.
(CLL) then blood tests are
one of the best indicators Initially, I had appointments at the hospital every
in monitoring your 3 months, and then every 6 months, when I have
lymphoma. blood tests. I have three support nurses who I can
contact between appointments if I have any concerns.
10 Lymphoma Matters Summer 2021You may find our new book for carers helpful: lymphoma-action.org.uk/Caring ASK THE
EXPERT
This might change as your How long does active Many people struggle to
medical team have a better monitoring last? come to terms with active
understanding of your Clinicians should set out the monitoring and a clinical
lymphoma, and they might factors that will lead to a psychologist may be helpful.
feel that more time between change in the management Your health team should be
appointments is appropriate. plan for a individual patient. able to refer you to places
Generally, when a person where you can get help.
How often should I check starts active monitoring,
for symptoms? it can last as long as there
Symptoms are likely to come are no changes that mean Symptoms of lymphoma
on gradually so you don’t an alternative approach is The most common symptoms
need to check for symptoms needed. So it is important of lymphoma are:
daily, but it is important to to know what changes Swollen lymph nodes –
monitor how you are feeling might trigger intervention. lump or lumps, usually in
over time. Many symptoms the neck, armpit or groin.
of lymphoma, such as There are people whose They are usually painless.
fatigue or weight loss, are lymphoma stays stable for Fatigue – increased fatigue
quite general, so it is difficult years or decades and many where you feel exhausted
to know what is significant that will never need treatment for no obvious reason or
and what is not. Remember, at all. Clinicians cannot feel washed out after doing
those around you might be predict who those people very little. It is not the same
in the best position to flag will be, but this might change as normal tiredness; fatigue
up any concerns about your as knowledge improves. is overwhelming and doesn’t
health. However, if you have usually improve after sleep
any worries call your CNS What can family, friends or rest.
about the symptoms you and carers to do help? Unexplained weight loss –
are experiencing, particularly There are many ways to losing a lot of weight quite
those listed at the end of support an individual with quickly without trying to.
this article. They will be able lymphoma. One of the most Sweats – most commonly
to reassure you, or liaise with important is to understand at night and drenching
your consultant to bring active monitoring, and don’t such that nightclothes and
an appointment forward if be afraid to ask questions. bed sheets become wet.
needed. It does not rest on The clinical nurse specialist Itching – without a rash,
your shoulders to feel you is a good person to provide which can be troublesome.
have to know what is urgent information. Alternatively, Loss of appetite.
and what is not. you can contact Lymphoma Persistent infections.
Action. Some people want Just not feeling right.
If there is something you to know lots of information,
are concerned about do not and others just enough for To watch the full webinar,
wait until your consultation. their circumstances. This including the experience of
Get in touch. It may not be is understandable, and you people living on active
an issue, but do not wait. can support the person by monitoring, go to
helping them find out what lymphoma-action.org.uk/
they need to know. wellbeing-videos#LivingAM
Lymphoma Matters Summer 2021 11Find out more at lymphoma-action.org.uk/Run
FUNDRAISING
Take on a running challenge
for #TeamLymphoma!
Whether you’re looking for a new
challenge this autumn or running
is already your thing, there are lots
of ways you can get involved. Get
your trainers on, and help raise
vital funds for us!
Contact us to find out how to
secure your place for the following
fantastic events.
Hackney Half Marathon – Sunday 26 September 2021
This is one of the flattest, fastest and freshest half marathons, and the one
that shows off East London at its best!
Hackney knows how to ‘party’ and you too can join the carnival as the streets are
lined with supporters and live entertainers.
lymphoma-action.org.uk/hackney-half-marathon
Loch Ness Marathon – Sunday 3 October 2021
Keep your eyes peeled for a famous local!
This is quite possibly one of the most stunning marathons in the world, which follows
a spectacular point-to-point route alongside the world famous Loch Ness. Why not
make a Highland weekend of it and come with family or friends?
lymphoma-action.org.uk/loch-ness-marathon
12 Lymphoma Matters Summer 2021Call our fundraising team on 01296 619419 to find out more
FUNDRAISING
Virtual London Marathon 2021 – Sunday 3 October 2021
This year the London Marathon will be the biggest virtual marathon staged
anywhere in the world!
To take part you just have to complete the 26.2 miles within 24 hours on Sunday 3
October - so it’s your run, your way! This means you can take it at your own pace and
run or walk to receive that coveted finisher’s medal. We have secured 35 places and
would love for you to join our team as we celebrate our 35 year anniversary.
lymphoma-action.org.uk/London2021
Royal Parks Half Marathon – Sunday 10 October 2021
Experience the best of London’s Royal Parks
The stunning route includes Hyde Park, Green Park, St James’s Park and Kensington
Gardens, with magnificent views of the capital city and historic landmarks.
lymphoma-action.org.uk/RoyalParks
Dublin Marathon – Sunday 24 October 2021
The illustrious Dublin Marathon now features in our 2021 running portfolio
Known for its relatively flat course, take in the iconic landmarks as you run through
the historic streets of Ireland’s capital.
lymphoma-action.org.uk/dublin-marathon
Lymphoma Matters Summer 2021 13PERSONAL
EXPERIENCE
Jamie, in Bridgerton
Getting back to where I was
You may know actor Jamie Beamish; most recently he has
played Nigel Berbrooke in Bridgerton and Ciaran in Derry Girls.
Here he explains how his diagnosis of lymphoma gave him a
different perspective on life.
I was diagnosed with Hodgkin It was the day after the opening night of
lymphoma in 2007 I, Keano that I had an MRI scan and a biopsy
I was 30 and playing Roy Keane in the musical taken from the inflamed node on my neck.
comedy, I, Keano in Dublin. Acting on stage I was diagnosed with classic Hodgkin lymphoma,
can be physically demanding, with seven or stage 2B (the B indicates that I had symptoms).
eight performances a week, so I had been Night sweats had just started, I had the lump,
exercising beforehand and was losing weight I had lost weight and was itching, but didn’t
in preparation for my role in the show. think too much about it. The symptoms were
there, but most of them I could explain away.
I noticed a painless lump on my collarbone,
which felt rubbery, so went to see my GP. It wasn’t difficult to be on stage. I was
He thought it was an infection and the lump scared about the lymphoma, but
was an inflamed node. However, a few weeks acting gave me something to focus
passed and it was rubbing and wasn’t getting
on for a few hours each evening
any smaller, so my GP referred me for a chest
After diagnosis I continued working, as it
X-ray. This revealed a shadow on my chest;
would be a few weeks before treatment
that was the start of numerous tests.
started. Acting was something I held on to.
14 Lymphoma Matters Summer 2021Find our more about Hodgkin lymphoma at lymphoma-action.org.uk/HL PERSONAL
EXPERIENCE
I was reading up about Hodgkin lymphoma At the end of 2007 I went into remission,
and it all sounded scary, so getting lost in the and was followed-up with regular check-ups.
show for a few hours each evening was brilliant. In the summer of 2009, a CAT scan revealed
The lymphoma wasn’t making me feel ill, the lymphoma was back.
although I did feel ill later – because of the
treatment. Thinking about it, I’d probably Going through it was tough, but facing
had the Hodgkin lymphoma for some time; it again with relapse was much tougher
certainly before I started working on the show. By now I was 32 and relapse felt such a blow.
My haematologist explained that they
I was upfront with the cast about the planned to do an autologous stem cell
diagnosis and everyone was worried and transplant (ASCT) using my own stem cells,
sympathetic. Dark humour broke the ice and with the aim of curing my lymphoma. Those
helped us through, with the suggestion that words were heartening.
I, Keano should be changed to I, Chemo!
Once again, it all happened in the midst of
I’ve had to do all sorts of things to working. I was in a play at the National Theatre,
my hair when acting, so losing it London, and also had a small part in the film
wasn’t a problem Robin Hood which was directed by Ridley
I had six rounds of ABVD chemotherapy over Scott and starred Russell Crowe. I was due
six months. Back in 2007, antiemetics weren’t to start treatment, so my agent spoke to the
as effective as they are now, so it was a bit of producers explaining I would need to pull out
a rough ride. It made me very sick. as they couldn’t guarantee I would be well
enough. I had accepted the effect on my work
Although I normally live in London, I, Keano by this time, but was shocked to hear that
was on in Dublin. Therefore I was diagnosed they still wanted me to be involved in Robin
and treated at home in Ireland. It made such Hood. Apparently, Ridley Scott had heard
a difference to be with my family and have about my diagnosis and said that if I was well
my mum and grandma really looking after me. enough, he wanted to have me on set. It was
an amazing gesture, given I had a small part,
My acting work stopped, which was but he wanted to help someone in a bad
situation. It was a huge boost at the time.
a real blow
As soon as treatment started, I had to stop
I was having ICE chemotherapy before
the tour of I, Keano. I had two more plays
harvesting my cells for the autologous stem
lined up, but I couldn’t be in them, and I
cell transplant. I had told my treating team
remember feeling devastated that they
about the possibility of still being in Robin
were going ahead without me. But then my
Hood and they planned my treatment so
haematologist told me that my bone marrow
that I was at my best when my part was due
biopsy was clear, and everything was put
to be filmed. It was such a big thing everyone
into stark perspective. My health was what
was doing for me, but they said they were
really mattered at that time and although
delighted to be able to make this happen.
I was disappointed that my acting work
A year later, it was a thrill to take my
stopped, I knew there would be more roles
grandma to see the film.
in the future.
Lymphoma Matters Summer 2021 15PERSONAL Read personal stories at lymphoma-action.org.uk/Stories
EXPERIENCE
The transplant was fine. It was I tried to run before I could walk, but bit by
after that I got sicker bit things built up again. I love what I do, but
The transplant itself was fine – almost a this illness stopped me doing what I love
non-event after everything else – it was doing, as well as other things in life. For me
after the transplant that I got sicker. it was all about getting back to where I was.
I got to appreciate it more.
I recovered more quickly than I thought and
after three weeks, they were talking about Playing a hittable baddy in
sending me home. I felt nervous about Bridgerton has been great fun
leaving the hospital environment, where I When I got the script for Bridgerton it looked
had been in isolation with people gowned like a great project, but I thought I would be
up to protect me from germs. Now I was unlikely to get the part as they were looking
heading home to be amongst people again. for an Englishman, while I am Irish and sound
In reality, it was once I had got home that the distinctly Irish. However, I sent in a tape and
recovery started. The illness never made me got the offer to play Nigel Berbrooke, who’s
sick, but the treatment did. It was tough but like the villain in the first two episodes.
really worth it, especially looking back
12 years later. The scale of the costume fitting warehouse
made it clear that this was going to be a major
When you are ill you never think production, and the amazing locations
you will be better again around England were fantastic. Being in
When you are small and ill you think you will Bridgerton was amazing and great fun - and
never be better again. Even with something I have really enjoyed all the furore that it has
like a cold you forget within a few days caused!
what it felt like to be well. Because it was
an extended period of recovery it was tricky. To listen to Jamie’s podcast, go to
Will I be the same? Will I be able to do the Lymphoma Voices at
things I did before? lymphoma-action.org.uk/Voices
Jamie in
Derry Girls
16 Lymphoma Matters Summer 2021lymphoma
PULL-OUT
GUIDE
matters
Your guide to wellbeing
Thinking about wellbeing can be challenging. We often think that
wellbeing means feeling good all the time, but even without
lymphoma, daily life may have many challenges. Wellbeing is about
balancing three things: having the skills and resources to manage
challenges, being able to focus on the things that matter to us most,
and being kind and compassionate to ourselves so we can live well.
Finding this balance can be tricky. Our brain likes to be ‘better safe than sorry’, so when we
are faced with situations that are worrying, or make us feel low or anxious, it automatically
switches into a ‘safety mode’ that can feel like being hijacked. Safety mode has just three
settings: fight, flight or freeze/flop. This process is automatic and floods your body with
adrenaline and cortisol to get you to safety quickly. But in ‘safety mode’ you can’t think
about what would help or what you need to do. There are different signs that tell us when
we’re in ‘safety mode’, including physical symptoms or having a very busy brain.
Signs of a busy brain are:
worried thoughts
‘should’ and ‘must’ thoughts (I should have done this, I must do that)
withdrawing or isolating
struggling with memory or concentration
being short tempered
feeling tired but wired
feeling exhausted.
It might be physical symptoms that alert you to being worried. A racing heart, sweating,
stomach churning, tunnel vision, lack of energy, and snappiness, are all key indicators.
The ideas on the following pages are aimed at helping you to get back control.
A thought diary can help you to spot and explore signs and patterns: things that trigger low
mood or anxiety and things that improve your mood or manage worry (see ideas on pages
18 and 19). Often we think are doing nothing, but if you keep an activity diary for a couple
of days you may well see that you are probably achieving far more than you think. Along
with the welling diary (page 18), these tools can help you to plan, and find the recharge
points and balance that are so important for wellbeing.
Lymphoma Matters Summer 2021 17Wellbeing diary
Finding your wellbeing balance can be a challenge when
you are affected by lymphoma
A wellbeing PACE-ing diary can help you to notice the things you are doing that help, the things
you might want to do more of and areas where you might need some help. You might notice
that many things you do fall into a number of the areas.
PACE stands for Physical and health, Achievements, Connections and Enjoyment.
Physical and health Went for a walk, Monday
had 8 hours sleep Physical and health
Achievements Baked a cake,
helped kids with homework Achievements
Connections Attended a support group,
had coffee with a friend Connections
Enjoyment Read a book, went out for
lunch, enjoyed the garden Enjoyment
Tuesday Wednesday
Physical and health Physical and health
Achievements Achievements
Connections Connections
Enjoyment Enjoyment
Thursday Friday
Physical and health Physical and health
Achievements Achievements
Connections Connections
Enjoyment Enjoyment
Saturday Sunday
Physical and health Physical and health
Achievements Achievements
Connections Connections
Enjoyment Enjoyment
18 Lymphoma Matters Summer 2021My wellbeing plan
When you are feeling very stressed, low or upset, it can
be hard to remember what you have found to be helpful,
and who is there to support you
Making a note of these things and keeping it somewhere that’s easy to find (perhaps a photo
on your smart phone or a printed copy) can make it easier to recover your wellbeing balance at
these times and decide what to do next.
What’s happening now?
How I hit the pause and reset button is:
What helps to calm me or lift my mood is:
The people who help or support me are:
Some helpful contact numbers or websites are:
Things that recharge me are:
Lymphoma Matters Summer 2021 19Ideas to help you pause
Rectangular breathing Four little questions
You can do this in just a few seconds. Ask yourself these questions to help you
Notice any rectangle around you identify what is causing you worry and
(it could be the TV, a window, a book). anxiety:
On the short side of the rectangle, What can I notice in my body?
take a normal breath in. (Heart racing, exhaustion, tension/pain,
On the long side of the rectangle stomach churning)
take a long breath out (maybe 3 seconds What’s going through my mind?
or more). (What if I have to start treatment, I can’t
Feel your shoulders drop down. This gives do anything, things will never be normal)
a message to your brain that you’re not What am I doing?
fighting any more. (Being snappy, withdrawing, doing too
Repeat five times. much, ruminating)
How do I feel emotionally?
Focus on your surroundings (Scared, sad, lonely, angry, frustrated,
worried)
Think about other things, by focusing on
your surroundings. Consider: Take your attention away
5 things you can see
4 things you can hear
from the threat
3 things you can touch Have something else to focus on.
2 things you can smell Put something in your pocket, like those
1 thing you can taste. little yellow stretchy men or a pebble.
Put an elastic band on your wrist and
give it a little snap; it will give you
Explore what worked before something else to focus on.
It might help to write a list of what
helped you before you had lymphoma.
What made you feel better if you
were worried about something?
It may be going out for a walk, a run or a
swim, gardening or simply enjoying the
sun on your face.
To do lists
Lists can help with planning and bring a real sense of achievement. By crossing things off, you
appreciate how much you have done. You can focus on the day, the month or even the year.
This wellbeing resource was produced as a pull-out guide for Lymphoma
Matters magazine 120 Summer 2021. Lymphoma Action is grateful to
Angela Waind, Consultant Counselling Psychologist at North Cumbria
Integrated Care NHS Foundation Trust, for helping us to create the
content of this resource.
© Lymphoma Action. June 2021.Fine out more about at lymphoma-action.org.uk/BridgesWalk
FUNDRAISING
Bridges
of Britain
is back!
We’re delighted to be bringing back It will be rewarding, fun, and absolutely
our Bridges of Britain walk for 2021. achievable, and we would love to
welcome you to Team Lymphoma.
This is a family friendly event all about
you – Your Walk, Your Way – you just have Adults £10
to complete a 7-mile walk which includes Family (2 adults + 2 children) £25
walking over a bridge. Put a date in your Young people aged 4-16 £5
diary for Sunday 26 September. Wherever Children under 3 free
you are in the UK, you can get involved!
We ask that you raise £100 in sponsorship
As well as 2021 being our 35th anniversary, and we’ll support you in your fundraising.
this event is taking place during Blood Cancer All adult walkers receive a T-shirt and
Awareness Month, so we want to see as medal. Children also receive a medal and
many of you as possible out there walking small T-shirts are available to purchase in
in your purple T-shirts. And as this event advance for £6.50. There is also a prize for
is arranged completely by us, every penny the most bridges crossed!
you raise in sponsorship goes directly to
support people affected by lymphoma. lymphoma-action.org.uk/BridgesWalk
Lymphoma Matters Summer 2021 21BACK TO Find out more about treatments at lymphoma-action.org.uk/Staging
BASICS
Staging of lymphoma
‘Staging’ is the process of working out which Other types of cancer may ‘spread’ to lymph
parts of the body are affected by lymphoma. nodes, but lymphoma cells can often be
This is important in order to give information found in other areas of the body because they
on prognosis and for deciding on the best normally circulate thorughout the body.
treatment. The tests and scans people have
when they are diagnosed help doctors to Staging lymphoma is important in helping
work out the stage of their lymphoma. medical teams plan the most appropriate
treatment, as different stages need different
The lymphatic system runs throughout types and combinations of treatments.
the body to enable our immune system to Advanced stage lymphoma can be treatable,
protect it. White blood cells, or lymphocytes, and depending on the exact type of lymphoma,
carried in the lymphatic system circulate it may be curable or controlled for a long time.
so that they can respond to infection or
inflammation wherever it occurs in the body. Staging is the same for Hodgkin and non-
It is common for lymphoma to be in several Hodgkin lymphomas, with a few exceptions:
areas when it is diagnosed, which may be non-Hodgkin lymphoma in children
termed ‘advanced stage’ lymphoma. chronic lymphocytic leukaemia (CLL)
Staging of Hodgkin and non-Hodgkin lymphoma in adults
There are four stages of lymphoma, numbered 1 to 4 or in Roman numerals, I to IV.
Stage 1: Stage 2:
Only one group of lymph nodes affected Two or more groups of lymph nodes affected
Lymphoma is in only one group of lymph Lymphoma is in two or more groups of lymph
nodes (glands) or site (for example salivary nodes or sites. These can be anywhere in the
gland, stomach, orbit). This can be anywhere body, but on the same side of the diaphragm
in the body. (the muscle separating the chest and the tummy).
22 Lymphoma Matters Summer 2021Our freephone Helpline is here for you: 0808 808 5555 (Mon-Fri, 10am-3pm) BACK TO
BASICS
Waldenström’s macroglobulinaemia ’Early’ stage and ‘advanced’ stage
skin (cutaneous) lymphomas. ‘Early’ (or ‘limited’) stage or ‘advanced’ stage
Read about how these lymphomas are staged lymphoma is a simplified version of the staging
at lymphoma-action.org.uk/Staging above. ‘Early’ stage generally means stage 1 or 2,
and ‘advanced’ stage means stage 3 or 4.
Letters or numbers after your stage
The letter ‘A’ after the stage means none of The difference between stage and grade
the following ‘B’ symptoms are present: ‘Stages’ and ‘grades’ of lymphoma are different:
unintentional significant weight loss the stage is how much of the body is affected
drenching night sweats by lymphoma, and the grade is how quickly
fevers (temperatures above 38°C). the lymphoma is growing.
The letter ‘B’ means the person has one or Low-grade lymphomas are usually
more of these symptoms. slow-growing and high-grade lymphomas
are usually fast-growing.
The letter ‘E’ is for ‘extranodal’, and means Lymphoma can be high-grade but early
lymphoma started outside the lymphatic stage, low-grade but advanced stage, or
system - for example, in the digestive system any other combination.
or in the salivary glands. As the spleen and
the thymus are part of the lymphatic system,
lymphoma in these organs is not ‘extranodal’. With thanks to Dr Eve Gallop-Evans,
Consultant Clinical Oncologist at the
The letter ‘S’ after the stage means there is Velindre Hospital, Cardiff, for reviewing
lymphoma in the spleen. this article.
Stage 3: Stage 4:
Lymph nodes affected on both sides of the Lymphoma either in organs outside the
diaphragm lymphatic system or in the bone marrow
There are lymph nodes that contain lymphoma, Lymphoma has spread to the bone marrow or at
or affected sites, on both sides of the diaphragm. least one organ outside the lymphatic system
(for example the lungs, liver or solid bones).
Lymphoma Matters Summer 2021 23PERSONAL Read people’s stories at lymphoma-action.org.uk/Stories
EXPERIENCE
Alan’s story
In 2009, at the age of 67, I had just come My spleen, instead of being tucked safely
back from holiday. Despite being tanned, under my ribs on the left side, stretched
which makes people look well, I was right across my abdomen. This, along with
struggling with pain in my stomach and the night sweats I was now experiencing
had a rash around that area. and loss of weight was flagging a serious
I had also lost a noticeable amount of weight problem to the haematologist. I have to
during my trip. I went to see my GP who admit, I wasn’t feeling my best by now.
thought I had shingles and gave me antivirals.
At first leukaemia was suggested, but after
Unfortunately the pain didn’t go away.
bone marrow samples were taken and further
tests were done, I was diagnosed with indolent
I went back to my doctor who had a young
B-cell non-Hodgkin lymphoma, stage IVB.
locum training with him, so he asked her to
examine me. She thought I had an enlarged
spleen, so it was suggested I have blood
tests carried out straightaway. Within a day
I received a phone call from a consultant It’s easy to put symptoms down
haematologist asking me to go to see him. to just getting older
24 Lymphoma Matters Summer 2021Find out more about rituximab at lymphoma-action.org.uk/Rituximab PERSONAL
EXPERIENCE
I was examined by a leading splenectomy The experience did not seem as harsh
specialist, and there was talk about having as the previous chemotherapy and I was
my spleen removed. After researching into particularly relieved that the anti-sickness
the spleen, I realised if it is working properly, drugs given to me seem to have improved
it provides about 30-40% of the immune enormously. I am now back on active
system, so I was keen to hold on to it. monitoring (watch and wait).
Fortunately a splenectomy was avoided
and, although compromised, it is still part I realise, in retrospect, the lymphoma was
of my immune system. probably present in my body some years
before I retired; but I had thought that the
Chemotherapy started in February 2010 reduced energy and drive was just because
with R-CVP (rituximab, cyclophosphamide, I was getting old.
vincristine and prednisolone), which was
successful without too many nasty side Since retirement, and whilst self isolating
effects. I started off partially bald anyway, during chemotherapy treatment, I started
so losing some of my hair didn’t worry me. writing a book. It was published in 2019 and
On a positive note, my spleen reduced to is entitled A Working Life by A.F. Lodge,
near normal size. What troubled me most which looks back on some of the fascinating
at that time was feeling so sick. I felt really places I have worked during a career in the
rough for quite a bit of the time, but felt chemical engineering sector. It is part travel
fortunate not to have the terrible ulcers blog and includes countries like Russia,
that other people struggle with. Bulgaria, Iran and India, experienced in very
different times over the past sixty years.
I was placed on active monitoring (watch Ironically, the penultimate job I worked on
and wait) without any further medication was validating a plant in Spain built to
until 2016 when my spleen started to enlarge produce rituximab, the monoclonal antibody
again and my red blood cell count reduced. included in my treatment. This, along with
my wife and the wonderful staff who have
For my second batch of chemotherapy treated me and helped to keep me alive, I
I was given rituximab and bendamustine owe a big ‘thank you.’
which thankfully was again successful,
with fewer side effects.
To my wife and the wonderful
staff who have treated me and
helped to keep me alive, I
owe a big ‘thank you’.
Lymphoma Matters Summer 2021 25FUNDRAISING
September is Blood
Cancer Awareness Month
Every 27 minutes, one of us is
diagnosed with lymphoma.
It’s the UK’s fifth most common
cancer, but is not well known
and the signs can be overlooked.
While all our work helps to raise the
profile of lymphoma, we have a specific
focus on awareness raising during
September and we would love to see
lots of you get involved!
Share the symptoms
Order or download our symptoms posters and postcards and display them at your local
GP surgery, supermarket, place of worship, library, community centre, workplace or even
your own front window.
Support World Lymphoma Awareness Day - Wednesday 15 September
Engage with our social media posts on World Lymphoma Awareness Day to be part of a
global message - the more you share, like and comment the further the messages will
travel and the higher the profile will be raised!
Join 27 in 27
By taking part you will not only help
spread the important message that
someone is diagnosed with lymphoma
every 27 minutes, you will also raise
vital funds to support our work.
Find out more and sign up at: lymphoma-action.org.uk/Awareness
26 Lymphoma Matters Summer 2021Find out more at lymphoma-action.org.uk/Fundraising or call 01296 619419
FUNDRAISING
Here’s some ideas for how you
can raise your £27 to help us
provide much needed support
to people affected by lymphoma:
Look in pockets and old bags to collect lost, loose change.
Offer to walk a friend’s dog for a donation.
Sell an item of clothing you no longer wear on an online
auction site.
Wash someone’s car – or 27 cars! – for a donation.
Host a BBQ for your friends for a small entry fee.
Bake cakes or biscuits and ‘sell’ them in return for a
donation.
Or why not get sponsored to do something?
Cycle 27 miles during a month (that’s just four 7-mile rides!)
Walk to school or work 27 times.
Swim 27 lengths or widths in your local pool.
Run a mile a day for 27 days.
Do 27 minutes of exercise a day.
How your £27 will help
£27 will fund: A call to our dedicated helpline, enabling
our experienced team to support anyone affected by
lymphoma, including family and friends.
£270 will fund: Adding 4 clinical trials to Lymphoma
TrialsLink - to help people find clinical trials that may
be suitable for them.
Lymphoma Matters Summer 2021 27PERSONAL Read more about skin lymphoma at lymphoma-action.org.uk/Skin
EXPERIENCE
I don’t let my
lymphoma define
me and how I feel
about myself
Harriet talks about the importance
of not giving up after 17 years of
failed treatments and misdiagnosis
for her exceptionally rare T-cell
skin lymphoma, Hypopigmented
Mycosis Fungoides (HMF). She
explains how Lymphoma Action
helped her to come to terms with
her diagnosis.
I am sharing my story for several reasons. Initially, they were across my stomach,
Firstly, I hope that I can play a small part in lower back and buttocks. However, over the
raising awareness of my exceptionally rare years they have spread slowly over a much
cutaneous (skin) lymphoma. Secondly, I larger surface area of my body. Right now,
hope that it encourages others to not give they are across the top of my thighs, buttocks,
up when you know something is not right trunk, underarms, arms, and breasts. My pale
with your body, and you’re still not getting white skin and certain lighting makes the
the help and the answers that you need. patches difficult to detect with a quick glance,
Finally, I wanted to share how Lymphoma but whenever I tan under natural sunlight
Action helped me find the answers that I the patches on my skin don’t. This means
was looking for, which has enabled me to my skin then has an alarmingly obvious
move forwards positively and to fully come mottled appearance that is startling to
to terms with my skin condition, one that those who are unaccustomed to seeing it.
I will be living with, and managing, for the
rest of my life. Comments from strangers about my skin
motivated visits to GPs and dermatologists.
I first realised something wasn’t right with Repeatedly, I was misdiagnosed and treated
my skin when I was 14 years old. I was sun- for a variety of different skin conditions:
bathing on holiday and I noticed numerous eczema, ichthyosis, tinea versicolor, vitiligo
dry, flaky, scaly patches which didn’t tan, and dry skin. No treatment had any positive
and which felt and looked like parchment effect, the doctors didn’t have any answers,
or cigarette-paper. No amount of cleaning, and there was no follow-up. This period of
scratching, scraping or moisturising made uncertainty and the failure of treatments
them go away. was exhausting and upsetting.
28 Lymphoma Matters Summer 2021You can also read
