One
BIG
Community 28 - 29 November 2021
Chai Digital Brochure
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Relendex is proud to support the work of Chai Cancer Care
Looking back over the last year, we have a lot to be thankful for. The launch and rollout of the vaccines have allowed us all to move back towards some semblance of normality in our lives, and start appreciating the small freedoms that we had previously taken for granted. Last year of course, our annual dinner was replaced by an online campaign, and we were humbled by the outpouring of support and generosity which saw us raise over £3m of vital funding for Chai. I wrote about the devastating consequences of the pandemic. The 18 months of diagnosis and treatment delays have led to more intensive short-term disease management and poorer long-term outcomes. Many clinical trials have also been delayed or suspended, hindering scientific research and causing a detrimental knock-on effect to innovation. Cancer is considered by many, as the UK’s primary health priority in the post-Covid world. With many unable or unwilling to leave their homes, Chai has responded by launching virtual support services and care which has allowed us to reach thousands more people on a weekly basis. This is in addition to the huge
range of services that Chai continues to provide in its centres across the country; giving support, counselling, treatment and physical therapies. Unfortunately, the demand for Chai’s services is now greater than ever, and we need your help to safeguard the future of Chai, in the face of even greater demand. As always, I am enormously proud of our incredible Chai Dinner Brochure Committee. We have managed, within a few short weeks, to put together an incredible virtual brochure, as well as a number of sponsors for both our online and social media campaigns. A very special thank you to all of our corporate and personal sponsors for their incredible generosity. Please take note of the brochure sponsors and advertisers, and make a point of showing them your support. On behalf of Chai, the patients and their families - thank you. We truly are One Big Community.
Message from our Brochure Chairman Elli Morris
Blandford Capital is proud to support Chai Cancer Care
With best wishes from
Valerie & Brian Chalfen
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Proud Supporter of Chai Cancer Care
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charitable partners, we believe meaningful, that every successful relationship at every touch mutually rewarding kind. point should be built on trust: the genuine, meaningful, mutually rewarding kind. Jonathan Benjamin and the RedLaw team are delighted to support Chai Cancer Care.
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Covid-19 has dominated the world for the past 18 months to the exclusion of almost all else. Chai’s CEO Lisa Steele explains why, as the voice of cancer support in the community, the organisation had to speak up
the guidance’ is a phrase we’ve all become ‘Following used to this past year and a half. We all understood the importance of halting the spread of Covid-19, though few of us could have imagined quite how extreme – and long-lasting – the restrictions would be.
Fears surrounding going to hospital, combined with limited access to GPs and no face-to-face appointments have had inevitable consequences. Macmillan estimates that across the UK there are currently around 50,000 ‘missing diagnoses’, compared with pre-pandemic times.
In response to the pandemic, Chai followed the guidance and transformed the way it delivered its services, literally overnight, proving its flexibility to cope in a crisis situation. Initial consultations with new clients have always taken place within 24 to 48 hours. By using phone and Zoom, our Client Service Managers (CSMs) could act even more swiftly to begin support. Group activities went online too, and for the first time drew together clients from across the land (and abroad), connecting and supporting people, and helping to dispel the isolation many were experiencing.
The evidence is clear at Chai as we see clients coming to us with later diagnoses, which require more radical treatment, and mean potentially complex outcomes for the patient and sadly, too, for their loved ones. Covid-19 has added a layer of trauma to those affected by cancer; they are navigating a different system of care. Through the period of the pandemic, we’ve seen the pressure on certain of our services grow significantly. Since the start of the pandemic, there have been 17,000 appointments for adult counselling and specialised children’s support – a rise of 30% – as other face-to-face and touch therapies have been off limits.
Our team provided yoga, mindfulness and Pilates, exercise and support group sessions as well as individual art, play and music therapy, physiotherapy and counselling. At the crucial end-of-life stage, and with medical approval, we were able to provide counselling sessions and certain home support services when it was appropriate.
For every patient, there may be five or six family members who also need our services. One person, diagnosed in his 30s, has brought four generations to us. So we know all too well, cancer didn’t disappear last year; it just became less visible.
That it was such a seamless transition is down to the professionalism and dedication of everyone involved. You can read throughout the magazine how our services helped to sustain the physical and emotional wellbeing of our clients – to know we were still here, when so much had disappeared.
‘Since the pandemic started, there have been 17,000 appointments for adult counselling and specialised children’s support’
An appeal to all
against this backdrop that on World Cancer Day on February It4was of this year, Chai spoke out with an urgent and direct Letter to the Community. The aim was to put cancer back on the radar and raise awareness: to not ignore symptoms nor skip regular screenings. We urgently wanted to reassure people that hospitals were now set up to deal with cancer. Written by Dr Adrian Tookman, chair of our Medical Advisory Panel, and with the endorsement of his fellow panel members, the letter went to the Jewish press and was publicised on social media. The message was welcomed by GPs who are eager for patients to come forward and has been echoed across the medical world to the general public.
Dilemmas everywhere
On April 19, Chai finally opened its doors to welcome clients back in person. We felt the power of this moment: it threw into relief how much we all missed ‘in real life’ contact.
upon it by the pandemic: establishing cancer hubs, switching patients to tablet-form treatment instead of hospital-based infusions, prioritising surgeries. Still, the impact on those affected has been immense, whether in regards to diagnosis or treatment.
Being geographically more distant made relationships more intense, especially for our CSMs who hear and deal with the confusion, pain and anxiety of people every day.
NHS took extraordinary steps to try and adapt cancer Thetreatment around the unprecedented circumstances forced
• If you notice any physical changes or have any concerns contact your GP as soon as possible • Make sure you continue to attend scheduled screening appointments and tests • Be self-aware and don’t ignore any symptoms
‘On World Cancer Day, Chai spoke out with an urgent Letter to the Community’
For them, especially, being back together in the same space was hugely emotional. I can’t overstate the importance of the support we give each other. In lockdown, our weekly catch-ups became daily and this is set to continue.
Our committees have organised events when restrictions allowed. Fundraisers continued theirs, too, both solo and bubbled – often sports- and food-related. We’re eager for our volunteers to fully re-start their activities, too, as we know how much they have missed being able to contribute.
Though some of our usual, comforting touches, such as tea, biscuits and relaxing lounges, have been temporarily curtailed, we hope normal service will be resumed soon.
We always say we wish there was no need for Chai. But our co-founders Frances Winegarten z’l and Susan Shipman felt compelled to speak to, and advocate on behalf of people affected by cancer, to encourage them to come forward to take advantage of Chai’s unrivalled services. Today, in these extraordinary times, this message could not be more relevant.
As I write, our face-to-face groups are still on hold. Yet we’ve seen how necessity has inspired innovation at Chai: we’ve optimised how we operate; we now Zoom with our expert panels and trustees; have expanded how we provide services; seen opportunities for webinars that educate the wider public, and witnessed friendship bonds grow between clients who have connected on group Zoom sessions. The outpouring of support from across the community during our 36-hour Big C campaign was astonishing and raised £3.1m, more than doubling its target.
Lessons from a GP with cancer
As a doctor, journalist and TV presenter Philippa Kaye never expected to be writing about her own cancer diagnosis two years ago at 39. Did being a medic help? I denied what was happening The day I was diagnosed, so many people told me to contact Chai. The next day I opened my laptop, went to the website, started reading – then slammed the lid tight shut and went and did something else. I did not want to be a cancer patient, I did not want to identify as that person, I was not ready. It’s still something I struggle with.
Being a GP helped… up to a point No one expects to write an article entitled ‘lessons I learned about having cancer’. As a GP, I think about illness far more than the average person. Every time a patient walks through my door I’m watching for signs and symptoms, which could indicate the need for an urgent referral. And when a diagnosis is made, GPs are perhaps the best placed people on your medical team to see how you’re doing: we know you and your family, what you do and so much more about your life.
‘As I saw my own cancer on the There was little time screen I felt myself descend into to be me any more doctor mode, focusing on a treatment Everyone has a different response to their diagnosis, which plan and what came next instead is all encompassing. It comes not only for your body but for all the roles you play in your life: for me, this was mother, wife, doctor, of processing what was happening journalist, author, daughter, sister, friend and more. It inveigles to me’ its way into every conversation. Yet often there is no time And yet… I still didn’t truly understand the impact of a cancer diagnosis until I received one myself. I was 39, working as a doctor and in the media, with a husband, three young children and a busy, happy life. Being diagnosed with stage-2 bowel cancer took my medical team and me by surprise. I didn’t have classic symptoms. As I saw my own cancer on the screen I felt myself descend into doctor mode, focusing on a treatment plan and what came next instead of processing what was happening to me. Some aspects of being a doctor were a protection: I understand medical terminology, that my medical team speaks my language comforts me. But I couldn’t turn my doctor’s head off. We’re taught to think ahead, to confront worst-case scenarios, discuss risks and benefits. All this battled with my needs as a cancer patient, which was to focus on the present. It was giving up control – and my surgeons told me off for answering questions about my observations in hospital when they were asking the nurses and not me! Doctors like to do something that helps: a prescription, a sick note, a chat. As a patient I often understood that not everything could be made better and that what I needed was support. Now, to be able to sit with my patients in their pain, to say I see how hard it is for them, has made me a different, and I hope better, doctor.
to process the diagnosis before treatment starts. I had major surgery within a week, and once on the rollercoaster of treatment, the carriages move very quickly! Yet it took months for me to understand that just as my body required treatment, so too did my mind.
I had to find my way to support A few weeks after I returned home from hospital after my first major surgery, I returned to the Chai website. I was determined to do everything in my power to recover and to lessen my risk of recurrence in the future. This meant asking for help, learning about exercise for recovery and how to reduce fatigue during chemotherapy. And it meant therapy to help treat the psychological trauma that is cancer. Slowly I came to understand that although I may not have wanted to be there as a cancer patient, I would benefit from it. Every choice Chai gave me was empowering, giving me back a feeling of control over my body.
‘Every choice Chai gave me was empowering, giving me back a feeling of control over my body’
Watch out for some powerful emotions The feelings associated with cancer are BIG, raising questions you may have never considered before, about your mortality and the choices you have – from reminding my husband to book the dentist to writing letters to my family just in case I didn’t come back home. I learned feelings are often contradictory. I could be terrified and determined, angry and sad and everything in between. There were the feelings of others to consider. I’m lucky to be surrounded by people who love me and who would do anything to help. But often I was unable to identify what I needed and I felt the weight of their helplessness, too. They hurt when you hurt, and while it’s supportive, it can also lead to feelings of guilt that you have brought cancer into their lives.
Dealing with uncertainty
and the body, for the whole person in all that they are. That is what Chai gave, and still gives me: helping me rebuild my body in the gym after surgery and perhaps the most important treatment of all, psychotherapy. To be able to talk, to rant, rage and cry in a safe non-judgemental environment has been utterly invaluable and I am incredibly grateful.
Learning to be cancer-free In February 2021 I had my first set of scans, scopes and blood tests, which came back negative, cancer free. Now I have to learn to no longer wait from scan to scan, but to look forward and plan ahead. Many patients describe the first few years of cancer treatment like falling off a cliff, that you go from seeing your medical team often multiple times per week to every few months which feels lonely and frightening. Chai is still here, still helping me recover and heal, physically and emotionally. I only wish that all the patients I see had the same opportunities.
Cancer patients, in fact all patients, say uncertainty is one of the worst aspects of being unwell, constantly waiting for the next scan, the next strategy, to see if something has worked. During and after treatment, I felt I was standing under the sword of Damocles. It’s an intense psychological burden and every procedure can trigger the feelings of that first encounter with the word cancer. ‘Scanxiety’ is very real and in the weeks before a scan or blood test I become more anxious, not sleeping well, still dealing with uncertainty and being afraid to hope.
What medicine cannot provide, Chai often can Chai knows answers to questions I didn’t know I’d need to ask. Where to go to buy a hairpiece (my hair didn’t all fall out but it thinned) or have my eyebrows tattooed? When I had side effects from treatment, Chai provided tips learned from other patients, such as which shoes were supportive yet soft when I developed foot symptoms from chemotherapy. Massage helped get me out of my head and into my body, bringing invaluable peace. Chai looked at me as an entire person, in all my roles and suggested help for every single one of them. True holistic care is for the mind
Doctors Get Cancer Too: A Doctor’s Diary of Life and Recovery From Cancer by Dr Philippa Kaye is published by Vie, £8.99
Side-effects and how to manage them Whatever your cancer diagnosis and treatment, some reactions are inevitable. Palliative specialist Dr Jane Neerkin suggests ways to deal with the most common symptoms When you are diagnosed with cancer, your days are taken up with appointments, scans, follow-ups, surgery, schedules for treatment… However, there’s often little time to think about how the treatment will make you feel. Side-effects differ in their levels of severity but there are steps you can take to relieve them. This not only helps you tolerate your treatment better, but also improve outcomes
Fatigue This is by far the most common symptom yet the least well addressed by health care professionals, largely because there is no sure-fire panacea that will sort it out. Be aware that you’ll feel fatigued not just during treatment but for a period afterwards. A rule of thumb is that it will last as long as your treatment: so nine months of treatment means nine months of fatigue and in some cases it is more. Many drugs have been tested but currently there have been few positive results.
Exercise is the single most beneficial thing to do. In particular aerobic exercise (brisk walking, swimming, cycling or running) has been shown to have a greater effect of lessening fatigue than a combination of aerobic and resistance exercises.
What you can do
Hypnotherapy in medical trials has proven helpful in alleviating fatigue and aiding better sleep. The therapy, which uses verbal instructions and visualisations, is one of several at Chai that can help – find the right one for you.
Conserve energy throughout your day so you have enough for things that you want or need to do. Understanding the benefits of exercise, diet, relaxation and good sleep routines is your first step.
Ginseng in capsule form (available from health food shops) can help patients undergoing chemotherapy although unfortunately, it has less impact in patients with advanced cancer.
Nausea and Vomiting
Altered Bowel Habit
Many people find the nausea caused by treatment is much harder to cope with than the pain of the cancer itself. Chemotherapy affects the lining of your gut, sending signals to the vomiting centre in the brain. Drugs, too, can directly affect the vomiting centre. While all patients are given anti-sickness drugs when they undergo chemotherapy, some may need additional medication so do discuss this with your oncologist.
Chemotherapy, immunotherapy and radiotherapy can all affect your normal bowel habit either causing diarrhoea or constipation. Both of these symptoms if not properly managed can cause serious problems as well as being distressing.
What you can do See the palliative care team associated with your treatment centre. Chai’s own Cancer Support Clinic specialises in managing symptoms such as sickness and can recommend both conventional and complementary therapies to help (see right). Avoid certain smells to fend off the triggers of your nausea. Try masking them with an alternative scent such as lavender. Good nutrition during treatment is really important and you may find plainer food and adjusting portion size and timing of meals are simple steps to take. Acupuncture can be helpful, but do check with your specialist as it’s not always recommended whilst you are actively having chemotherapy. Finger pressure and acupressure from sea bands (soft wristlets with a small disc that applies a gentle, constant pressure) are another option and are fine at any stage. Ginger is known to help nausea and vomiting and there have been some trials specifically in chemotherapy-induced nausea that show ginger extract (in tea or capsule form) can significantly reduce the feeling of sickness.
What you can do For diarrhoea, ensure you’re drinking plenty of fluids, around 2-3 litres a day. Taking Immodium (loperamide) will slow down the bowels and stop the diarrhoea. If you are going to the toilet more than six times a day, speak to your hospital to rule out infection or other possible causes. For constipation, increasing fibre in your diet is usually not enough to manage this drug-induced side effect and it can be worse if you are on strong painkillers as well as chemotherapy. Medication is usually required and works by either making the stool softer or by helping it to move through your gut more quickly. Depending on your needs, you will be prescribed the type of laxative that works best for you.
Dry Mouth and Sticky Saliva Medication and radiotherapy can cause severe dry mouth and sticky saliva, which can make eating very difficult.
What you can do Chewing gum stimulates saliva production, as do inhalations over steaming water. You can get artificial saliva products such as sprays, toothpastes and mouthwashes including Biotene, Oralieve and Glandosane. Drink more at meal times. You may need to take in additional fluids to help moisten food. If your mouth is dry you can become susceptible to oral thrush. This condition is harmless and easily treated but can be uncomfortable. If you notice a white coating in your mouth, contact your GP.
Dr Ja
Services at Chai
ne Ne e
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Dr Jane Neerkin is a consultant physician in Palliative Medicine at University College London Hospitals. A member of Chai’s Medical Advisory Panel, her specialism is early palliative care for young patients with cancer and she won a National Cancer Care Initiative of the Year award in 2019. She is also Training Programme Director for specialty registrars in palliative medicine in London.
Many of Chai’s services can help reduce the intensity of side-effects: from gym sessions to mindfulness, reflexology to massage, and nutrition to healing. The Cancer Support Clinic specialises specifically in dealing with uncontrolled symptoms arising from cancer and its treatment, unmanageable pain and adapting to physical changes.
Care is always on our curriculum School may have been out for much of the past year and a half, but Chai remained as constant as ever, supporting children affected by a cancer diagnosis Of all the groups touched by the pandemic, the long-term consequences of lockdown, social distancing and isolation on children, are the least predictable. So said Children’s Commissioner, Anne Longfield in a recent report. The charity YoungMinds, which has been charting the effect of lockdowns and school closures, also stated that the situation was more difficult for children dealing with illness [such as cancer in the family], and bereavement.
Covid-ready support However, one thing schoolchildren could rely on throughout the months of upheaval was the support provided by the Chai in Schools programme. When they were open, therapists saw their young clients in school for weekly art, play, music and counselling sessions. But like much of teaching, Chai in Schools also went online. Chief Executive, Lisa Steele explains: ‘It was a priority to make the transition as rapid and seamless as possible and to maintain regular weekly appointments that gave children a structure and focal point to rely on. In the middle of so much chaos, something familiar and safe in their lives was crucial.’ Parent Rachel, describes its importance: ‘It was such a relief and so reassuring for us to know Chai was there. My young son Sam was reluctant to go onto Zoom for school lessons but when it was his weekly Chai session he would bounce into the room, eager and excited to see his therapist. It’s been amazing.’ For older schoolchildren, it was equally vital, as 15-year-old client Anna* explains: ‘I can’t imagine how I would have coped
as a teenager dealing with grief and the illness of three family members plus lockdown worries, without my incredible Chai counsellor. In my weekly sessions, through these difficult times, she has helped me hold my life together and I cannot thank her enough.’
Nurturing resilience Set up initially for children impacted by a cancer diagnosis in the family, Chai in Schools is also there for the small number who are themselves, the patients. The programme, which is available to children aged 3 to 17, developed out of the Children, Teenage & Family service with the realisation that school is an ideal setting for giving them this kind of support. A therapist helps the child explore and understand all the feelings they are experiencing. Charlotte*, mum to six-year-old Amelie,* saw the huge impact her own cancer treatment had on her daughter. ‘She became extremely anxious about going to school and leaving me. Weekly play therapy helped her express her feelings, which was invaluable. The therapy continued after my treatment finished, ensuring my daughter didn’t slip backwards.’ Discussions about cancer at home are often whispered in the shadows because of a misconception that children will be upset if they know too much. But that approach can end up triggering confusion and anxiety. ‘Every family dynamic is unique and not every child (or family) wants therapy,’ says Lisa, ‘but a skilled counsellor can pick up on and address conscious and unconscious troubling emotions.’
Committed to Chai: pupils from Sinai take part in an awareness campaign
And it’s also a safe environment for them to explore their feelings in their therapy session.’ The set-up of in-school therapy means parents don’t have to worry about taking their child anywhere new – a huge relief and practical benefit. Debbie Joseph, Sinai’s Head of Operations adds, ‘This triangular approach between home, school and Chai is a real partnership. They always mobilise quickly with flexible, bespoke support.’
Teacher training There is a further purpose to Chai in Schools, which is to give teachers strategies, training and insights in how to nurture the child directly affected by the cancer diagnosis, as well as classmates and the wider school community. Recognising behavioural signs such as being withdrawn, angry or tearful is fundamental. In 2016 Juliette Lipshaw, headteacher at Sinai Primary School, contacted Lisa Steele when the parent of a pupil was diagnosed. ‘I wanted my leadership team to learn how to comfort children in this scenario. How do we speak to them? How do we also look after our younger teachers, some of whom may be bewildered and unsure how to handle this.’
Sinai gives back to Chai with numerous fundraising events, including participating in Mad Hair Day, when children donate money to come to school with funky hairstyles – Chai’s way of helping break the taboo of hair loss associated with cancer treatment. This year children also made personal commitments to raise awareness of Chai’s work for World Cancer Day’s I am, I will, social media campaign.
Juliette visited the flagship centre in North West London, which gave her a strong understanding of Chai’s all-round services and Lisa, who is also a counsellor, then visited Sinai to meet with staff. ‘Chai gave us a strong grounding for the part we can play,’ says Juliette, ‘explaining to children when a pupil in their class has had a bereavement and what they’re dealing with; how they need their friends, about consistency, love and care; how school is the place where they’re allowed to carry on as normal. It’s the constant: the building, the teachers, the lessons, the lunches are all the same.
‘In my weekly sessions, through these difficult times, my counsellor has helped me hold my life together’ Anna*, 15
‘This triangular approach between home, school and Chai is a real partnership’ Debbie Joseph, Sinai’s head of operations
‘Chai provided a session for the pupil’s class to talk about the bereavement, to share their feelings and fears’ Alice Aharon, headteacher, Fair Field School, Radlett
Chai in Schools is active in 23 Jewish and non-Jewish primary and secondary schools including Fair Field Junior School in Radlett. Headteacher Alice Aharon says, ‘I was worried that as a non-Jewish school we wouldn’t be able to access support but thankfully I was inaccurate with that assumption. Chai has been, and continues to be, an irreplaceable support during a very difficult time for one of our Jewish pupils. It provided a session for the pupil’s class to talk about the bereavement. This gave them the opportunity to share their feelings and fears. It was so special. As a headteacher, I have felt so supported by Chai. I was also put in touch with another headteacher who’d had the same experience, which was invaluable.’
For now and the future The rate of cancer in 25- to 49-year-olds has risen by 21% over the past three decades** and Chai now sees many more parents and their school-age children. Covid’s impact on treatment and surgeries and the reluctance of people to attend for regular scans has led to later and more complex diagnoses, which are now surfacing. ‘I expect a growing need for our Chai in Schools service,’ says Lisa Steele. ‘Thankfully it’s understood more than ever before, how important it is to help children through this unsettling time, and to nurture their resilience so they can be emotionally strong for the future.’ *Names have been changed **Cancer Research UK
Decoding ovarian cancer
Around one in 70 women in the UK develop ovarian cancer and the chances are significantly greater for the Ashkenazi female population. Professor Gordon Jayson of The Christie in Manchester explains where the research is heading
Every year in the UK, 7,400 women receive a diagnosis of ovarian cancer, which sadly accounts for more than 4,000 lives lost. There are several types of ovarian cancer, of which the most common is high-grade serous ovarian cancer, most usually seen around the age of 60. Typically, ovarian cancer develops in the ovaries and then spreads to the patient’s pelvis and abdomen (tummy). Because the illness spreads along the inside lining of the abdomen, symptoms habitually occur when the disease affects the patient’s bowels causing daily abdominal pain, swelling, discomfort or bloating. It’s worth knowing the difference between ovarian cancer symptoms and irritable bowel syndrome (IBS). In IBS, symptoms come and go whereas in ovarian cancer the symptoms come on in your 50s or 60s and worsen over several weeks. IBS doesn’t start in your 50s, so if you develop symptoms like this, you should visit your GP. The National Institute for Health and Clinical Excellence (NICE) suggests you should have a blood test to measure your CA125 protein level, which can increase in ovarian cancer. However, CA125 is not diagnostic of ovarian cancer as other non-cancerous conditions including endometriosis and gastroenteritis can also cause an increase in the protein. So, further investigations such as an ultrasound are needed.
Beating the genetic legacy The ovaries contain a woman’s eggs and are connected to the womb by ligaments and by the fallopian tubes. It is still largely unknown why women develop ovarian cancer although pregnancy, the oral contraceptive pill and tubal ligation (having your tubes tied) reduce the chances of it occurring. What we do know is that
1 in 5 women with ovarian cancer develop it because they have an abnormality in one of their BRCA genes (BRCA1 and BRCA2). The incidence of BRCA gene mutations is about 1 in 400 in the general population but rises to 1 in 40 in the Ashkenazi population, and men can carry and pass on the gene mutation, too. Generally speaking, if one parent has a BRCA gene abnormality, the chances of a child inheriting one of them is approximately 1 in 2. A child inheriting a faulty BRCA gene has a 50% chance of developing a cancer. It’s therefore important to detect the gene and monitor women who are affected. While cancers of the breast or ovary can largely be prevented by surgically removing these tissues, such operations prevent the woman from bearing children. So we encourage them to complete their families by the age of 35 in order that screening or surgery can then follow at around the age of 40. Recent research has shown that some of the most common types of ovarian cancer, including those caused by BRCA gene abnormalities, often arise in the part of the fallopian tube near the ovaries. New trials to prevent ovarian cancer are testing the value of removing the fallopian tubes rather than both ovaries so that fertility can be preserved. It is also possible to prevent passing BRCA gene abnormalities to children by using prenatal genetic diagnosis.
Daniel Glass, counsellor There are differences between having counselling at Chai and in a broader setting. At Chai, the person is there specifically because of cancer and it’s one of many services available to clients. In a wider context, the issues can be more diffuse and it’s usually when someone has hit a crisis point in their life. This means often, but not always, the client has greater and more specific focus: How am I going to cope? How will my partner cope? How do I tell the children? How do I deal better with what’s going on?
I see a lot of male clients, and though I wouldn’t generalise – each client is an individual – men tend to stick to the point, where it’s safer, rather than go to more sensitive areas. Women find it easier to talk but often self-edit, so you get the ‘presentable’ version. Part of the way I work is to reflect back things a client has said which add up to a theme, or show a contradiction. Checking back like this helps a person clarify what’s going on for them. Very often it’s the first time they recognise and articulate what they’re feeling and that is very empowering. I also reflect back the bravery, the consideration and all the other positives they have shown.
The context that frames all of the counselling at Chai is that we can’t change the physical situation. So sometimes what I’m doing is helping clients come to terms with new realities. For others, it’s just having the space to talk about things that are hard to express in the other parts of their lives. So I hear the anger, sadness, anxiety, fear, judgement, guilt.
My two surgeries resulted in the removal of some lymph nodes in my right armpit and all of them in the left. The consultant warned me about the likelihood of lymphoedema and recommended I start manual lymphatic drainage (MLD) immediately after surgery. Going to Chai has honestly changed my life. At times over the past seven years, it’s been a hard slog. Surgery left me with swelling mainly in my left arm. Early on, it ached constantly and I didn’t know where to put it to get relief. It was difficult to sleep and the heaviness stopped me doing even simple household chores. I can tell immediately when I’ve overdone it. I was self-conscious about how it looked and now wear a compression sleeve. Gina Maynard had a double lumpectomy for breast cancer diagnosed in 2013. She has manual lymphatic drainage at Chai.
Regular MLD gave me hope the lymphoedema could be managed and gradually I am doing more things. After my fortnightly appointment, my arm feels lighter and I am more relaxed. Now, seven years on, I’m baking again! Jane’s weekly MLD exercise classes on Zoom were heaven. She is so aware of what each of us needs. I don’t like giving in to anything – MLD gives me independence and control.
Jane Hickson, manual lymphatic drainage practitioner The lymph nodes (in the neck, thorax and groin mainly) act like central cleansing stations, filtering waste from the blood system into the lymphatic system to leave the body through the liver, kidneys etc. If the nodes are removed in surgery, that process is compromised causing a fluid build-up, called a lymphoedema. It pushes on and stretches tissues, and nerves and blood vessels become compressed making the limb swollen, heavy and painful. It causes patients difficulty with everyday activities: dressing, cooking, sleeping and even swallowing. Women are more prone to the condition, which can emerge decades after surgery, and is often visible. This can have a profound impact on confidence and patients have to wear a compression sleeve to ease the pain.
Zippora Gelpert, bereavement counsellor When people come to me, they’re often completely overwhelmed: in shock, numb, angry, sad. I see clients for bereavement counselling from any point after a diagnosis – because it can start from that very moment. Over the months, the grief becomes more contained, which is not to say it finishes. Someone said to me, ‘There is no expiry date on grief’ and that’s so true. There is no textbook. Grief can also manifest itself physically. The client guides what we talk about. What I offer is compassion, support and a confidential place for them to bring whatever is on their mind. Often bereavement counselling brings out complex and historic family dynamics, with difficult emotions. I help a client make sense of what is going on, get more insight and eventually feel a shift towards an inner peace.
MLD recreates the peristalsis cleansing action using gentle, repetitive movements with the fingers. Starting at the neck, above the site of the lymphoedema, I draw the excess fluids to the nearest lymph nodes so they can do their work.
‘WOMEN ARE MORE PRONE TO THE CONDITION. IT CAN HAVE A PROFOUND EFFECT ON CONFIDENCE’ Having MLD as soon as possible after surgery reduces the impact of a lymphoedema, softens the areas around scar tissue and assists the immune system’s function. If carefully undertaken, exercise can lessen the swelling, too. A session lasts 30 to 45 minutes and as much as the physical work, I think empathy with my clients contributes to a successful treatment.
Someone facing and going through bereavement can only process so much; even coming to counselling is a big step. T hey may feel nervous and I stress that I do not judge; that it’s normal to be angry, to feel relief – and not feel guilty – that the person has died, and that it’s fine to laugh again. Losses during COVID left many people feeling traumatised: unable to be with loved ones in hospital and with no proper funerals and shivas. It put grieving on hold and I’m now seeing people struggling because of that. It’s so important to validate this. It’s helpful for clients to know bereavement counselling has an end point. They, too, may have a milestone in mind, the stonesetting for example. As the relationship between the client and me evolves, they become empowered and encouraged to realise the strengths they have within.
AS A CHILD, LOUISE MODELLED FOR HER FATHER’S WORK IN RETAIL Louise Robey is an organisational change manager at the BBC. She began bereavement counselling in 2018 when her father Harvey was diagnosed with terminal cancer.
Dad made his money twice – and lost it twice. He had an incredible life (living it to the full!) but never remarried after his divorce 50-odd years ago. He went to live in France, then Poland, so I hadn’t seen much of him after the age of 21. Almost four years ago, he was diagnosed with pancreatic and liver cancer. Out in Poland, with little medical support, it fell to me to get him back. Overnight I became his carer, keeper and project manager – finding him a home, getting him into the medical system and supporting him fully. I felt all at sea, and I was working full time. A friend said, ‘Talk to Chai.’
‘I’M A PLANNER AND I COULDN’T PLAN FOR THIS’ Part of the problem was that Dad was in complete denial while being totally reliant on me. He’d always been a drinker and continued during his treatment. He’d call me and I’d go round and pick up the pieces… again and again. I couldn’t talk to Mum about it, my husband was taking care of his own mum and I didn’t want to burden my daughter.
Having counselling before Dad died, was crucial for me. At first, the process intimidated me. There were silences, which I didn’t understand. But I became more comfortable with them and began to talk, about suddenly having a relationship with a man who left when I was three. I didn’t think I’d bring childhood issues back into the room; I thought I’d dealt with all that. I was surprised at how angry I was with Dad… yet he was dying. Zippora reflected back to me how I was spinning between the practicalities of his chemo and doctors’ appointments on top of so many emotions. I felt guilty, too, about being immersed in Dad’s life, to the detriment of my own family’s. I’m a planner and I couldn’t plan for this. Chai became my safety net, where I could rage and cry and be honest in a way I couldn’t be to my family. I could just be. Having counselling was phenomenal and without it I would have been lost. It saved me. There were other services, too, including reflexology and working through the health and housing systems on Dad’s behalf that were invaluable. When you’re in crisis it’s hard to think practically. Chai was there. The counselling lasted for three years, until after Dad died last September. The powerful, trusting relationship I have with Zippora prepared me for that day and helped me acknowledge all that I’ve been through. I will never underestimate how lucky I am to have had Chai’s support.
After eight operations to remove tumours, and frequent scans, you could call me a regular at the Royal Free Hospital. Surgery on my bladder has reduced it considerably – it is very petite. Leaving the house for more than half an hour can be a nightmare and wherever I go, my first priority is to know where the loos are. In the past two years, I also had breast cancer and, after surgery, developed a deep vein thrombosis. I was rushed back in to hospital where they had to cut away part of my thigh. It was horrendous, day-to-day living was so hard. My mobility suffered, I had difficulty walking (I was using sticks) and breathing, and I felt a great deal more vulnerable. I lost so much of my freedom, I can’t describe it. I was dependent on my husband Phillippe to take me everywhere.
Since 2006 Esther Debourcieu has had eight surgeries for different cancers. Among other services, Chai helped her navigate council bureaucracy.
So you can imagine when Chai told me that I might fit the criteria for a Blue Badge, I couldn’t wait to apply. My heart sank when I saw what was involved, but Louise was very patient and we completed the forms. Then… boom… lockdown! Unfortunately that caused delays but Louise got on the case. In two weeks, my badge arrived. She was my magic wand! I cannot tell you how important it is for me because of my practical limitations. It’s given me my freedom again. Life is for living and Chai helps me do that!
Louise Crystal, benefits adviser I help clients identify what benefits they may be entitled to and take them through the application process for grants such as personal independence payments (PIP), attendance allowance (the equivalent for over-65s) or a Blue Badge. Having chemotherapy or recovering from surgery are intensely stressful so it’s a huge challenge to fill in these forms on your own. The one for personal independence payment is 44 pages long! But knowing there’s a benefit that you can’t access causes a lot of anxiety.
‘I SPEAK TO MORTGAGE, CREDIT CARD AND UTILITIES COMPANIES TO GET BILLS PUT ON HOLD’
One of the biggest fears surrounding a cancer diagnosis is how a person will cope financially if they can’t work. I speak tomortgage, credit card and utilities companies to get bills put on hold for a few months and 99% of the time they are receptive and act quickly. Taking care of all that allows a client to concentrate on their health. The service can dramatically improve a person’s quality of life. If a client stops using the shower because they’re unsteady, the PIP benefit gives them £149 a week to spend on a seat or grab rails for the shower. Someone with neuropathy (nerve damage) can buy special pans, plates and cutlery. They can pay for a taxi to hospital instead of taking public transport. Clients want to put on a brave face but I need to hear the very worst so I can make a strong case for them. It can be tough for them to discuss their fragilities so I always suggest they plan something nice to do afterwards.
The need-to-know about liver cancer It’s set to become the third most common cancer in the next decade. Dr Daniel Krell explains who’s at risk, the lifestyle changes that can protect us and where treatments are headed One of the most significant global health challenges may surprise you: it’s liver cancer. We’re more used to other types of cancer featuring in the headlines. Though the numbers of people with Hepatocellular carcinoma (HCC), are highest in Africa and East Asia, it’s increasingly common in the UK and Europe and since the early 2000s, is the fastest increasing cause of cancer-related death in the USA.
Where risk lies The likelihood of developing liver cancer is, to a degree, predictable: over 90% of HCC occurs where there is already chronic liver disease and scarring of the liver (cirrhosis). Those with the Hepatitis B and C viruses (caught from infected sexual partners and drug use involving shared needles) are most at risk.
‘A condition called “fatty liver” is often associated with obesity and diabetes’ The link between chronic alcohol consumption and liver disease, which can lead to HCC, is well known. There’s less awareness however of a condition called non-alcoholic steatohepatitis (NASH) or ‘fatty liver’, which affects approximately 5% of the UK population. It occurs when fat builds up, causing inflammation damage to the liver and is often associated with obesity and diabetes. Smoking is also a risk for HCC, seen in about 7% of cases. There are also a small number of inherited genetic conditions: haemochromatosis, which affects iron levels,
Alpha-1 antitrypsin deficiency, which causes lung and liver problems, and primary biliary cholangitis in which the bile ducts are damaged.
An elusive cancer Frustratingly, the early signs and symptoms of primary liver cancer are not obvious and it’s quite possible to be diagnosed with HCC with no symptoms. When they do appear, they may include unexplained weight loss and loss of appetite; upper abdominal pain and/or swelling; a jaundiced look to the eyes and skin; or a person may have symptoms associated with metastatic disease such as bone pain or breathlessness. Patients with known risk factors for HCC are screened regularly with a liver ultrasound and checked for tumour markers in the blood – both important for preventing the development of HCC. Diagnosis has traditionally been made using CT or MRI scans in conjunction with elevated blood-marker levels. Now there is a growing focus on gene characterisation of the tumour, to better understand the DNA of the cancer and so taking a biopsy of a suspicious lesion is becoming common practice. With Cancer Research UK reporting that 49% of liver cancer cases are preventable, it is within our grasp to reduce many of the risks through lifestyle changes such as maintaining a healthy weight, eating a balanced diet, not abusing alcohol, undertaking regular, moderate physical activity, and managing behavioural risks which lead to viral hepatitis. (There is a vaccine to protect healthy people from contracting hepatitis B but no vaccine against hepatitis C.)
Every treatment aims to remove the cancer, causing as little damage to the surrounding healthy tissue and as few side effects as possible. A number of techniques now make this viable. In trans-arterial embolization, small particles or beads are injected into the blood vessels going to the cancer, to block and starve it of the oxygen it needs to reproduce. Chemoembolization delivers chemotherapy drugs contained in tiny particles to a specific treatment site. Similar techniques can also target directly and selectively, liver tumours with radiotherapy.
Supporting liver health: lifestyle choices can go a long way to reducing the risk of developing liver cancer
That said, there is increasing evidence that certain medications can control infection and reduce the inflammation and damage these viruses cause in the liver.
‘49% of liver cancer cases are preventable. It’s within our grasp to reduce many of the risks’
More treatment options The prospects for managing liver cancer have improved significantly over the past 10 years and through careful patient selection, outcomes and survival rates are rising. Treatment strategy depends upon the extent of disease, underlying liver function and the patient’s fitness. The mainstay of curative approaches is liver resection and transplantation while surgery and systemic drugs provide other options. Ablative therapy, in which cancerous tissue is removed, can be performed in combination with radiofrequency waves (radiofrequency ablation (RFA)), where a high-frequency current targets and destroys small tumours. This is best suited to patients with early-stage HCC who are not candidates for surgery and also to bridge patients to potential transplantation in the future.
‘Small particles are injected into the blood vessels to block and starve the cancer of oxygen’
Drug therapies play an important role in the treatment of 50–60% of patients with HCC and are mainly used when the cancer is more advanced. The past five years have seen substantial progress in the use of immune check-point inhibitors, which stimulate the immune system to recognise and attack cancer cells and monoclonal antibodies, which block the pathways that cancer cells need to grow and spread. The recently approved combination of atezolizumab and bevacizumab, has more than doubled life expectancy and immunotherapy drug treatments are proving effective in 15–20% of patients. This generation of drugs is providing us with better first treatment options and studies of these therapies report a marked increase in overall survival and in quality of life for patients with more advanced HCC.
The healthy take-out Like many health issues in the west, lifestyle is a major culprit and the figures on rates of liver cancer are sobering. We may not eliminate 49% of preventable cases of HCC but empowering people through health awareness and advances in treatments, gives us more tools to meet the challenge.
Dr Daniel Krell is a Consultant Oncologist whose clinical work focuses on the management of patients with gastro-oesophageal, colorectal, pancreatic, liver and biliary tract cancers. He is a member of the multidisciplinary team for gastrointestinal and hepatobiliary cancer at the Royal Free Trust and oncology clinical lead for patients with neuroendocrine cancers. Dr Krell’s doctorate investigated the role that genetic mutations play in the development of cancer. He continues to be involved in research and trials aimed at identifying new cancer therapies for gastrointestinal, hepatobiliary and neuroendocrine malignancies.
October is Liver Cancer Awareness Month
This brochure is dedica ed o Ariel Klein אריאל יהודה בן פינחס צבי ז״ל
Chai Lifeline Cancer Care Registered Charity No. 1078956