By Hannah Daws | Communications Director
GlobalGiving report – January 2020
Innovate to elevate
Following the arrival of a new Chief Executive in April of last year, Breast Cancer Haven has been focusing on the creation of a new five-year strategy. After a series of consultations with a range of key stakeholders we have arrived at a new roadmap called, Innovate to Elevate, which is designed to help the charity reach more of those affected by breast cancer across the UK and beyond.
The next few years will see investment in fundraising, communications and infrastructure which will see the charity grow its income to a level of £8.5m by 2025. The reach of the charity’s services will also be expanded with the implementation of live online support programmes, as well as system of Breast Cancer Haven accredited therapists working across the country.
Our impact in numbers
During our financial year 2018/2019 we achieved the following:
Helping people with secondary breast cancer
We are always looking for ways to improve our services for those affected by breast cancer. As part of this, we recently conducted a study into the effectiveness of our secondary breast cancer support days which was published in ecancer in December.
There are 36,000 women living with secondary breast cancer in the UK. Many feel isolated and unsupported, their care needs unmet, or unaware of palliative care options available to them.
In response to these needs, we set up a monthly support day in 2014 at our Yorkshire centre in Leeds, providing a warm and friendly atmosphere for those with secondary breast cancer to meet each other, learn about their disease and how to improve their quality of life, and support each other. Over the last few years hundreds of local women attended the days.
Although we are always looking for ways to improve, we are very pleased that 98.8% of visitors felt that the day met their needs and expectations.
We received some very positive comments from visitors about the support day. Below are just a few:
‘A lovely positive group—felt very supported by the other women’
‘Very interesting and informative. Makes it easier to understand the different treatments.’
‘Masses of information I never knew. Made a visit to the hospice far less daunting’
‘Meeting others and hearing their stories makes you feel not so alone’
New Research: Two in three family and friends report mental or emotional health issues following a breast cancer diagnosis
In October, coinciding with Breast Cancer Awareness Month, we released the findings of our survey which looked at the impact of breast cancer on the family and friends of the individual diagnosed. The results reveal the worrying ripple effect of breast cancer and the impact on the mental and emotional wellbeing of loved ones. Two in three (67.48%) family members, friends and colleagues of those diagnosed reported emotional or mental health issues as a result.
Key findings
Common symptoms reported included stress (75.47%) and anxiety (72.96%). Over two in five reported fatigue and low energy (43.39%) and nearly one in five (17.5%) reported having suffered depression as a result of the diagnosis of someone they know. Almost one in three reported feelings of guilt (30%) and difficulty concentrating (30%), while one in five reported withdrawal from friends and family (20%). Over 10% reported having panic attacks.
A worrying 44% of respondents reported that they did not seek help because they didn’t know where to find it, they did not have time to seek it, or they thought it wasn’t available locally.
Dr Caroline Hoffman, Clinical and Research Director at Breast Cancer Haven, said:
“Breast cancer is the UK’s most common cancer and as such the results of the survey point towards the hidden mental health impact of the disease on friends and family.
“Each breast cancer diagnosis is traumatic and takes a huge toll on the individual: physically, emotionally and even financially. But this trauma isn’t limited to the person diagnosed; it also changes the lives of those closest to them. For every man or woman diagnosed with breast cancer, there are any number of family members and loved ones for whom the emotional impact is similarly devastating.
“Our survey shows that many of those affected do not seek the help they need so it’s vital that those who need help know where to find it, and feel able to ask for it.”
Daredevils wing it for breast cancer
20 brave people strapped themselves to the top wing of a Boeing Stearman biplane and took the skies to raise money for our Breast Cancer Haven support centre in Hereford. Their daring exploits helped to raise a hugely impressive $39,367 which will help 30 people access our vital support services.
Amrik’s story
‘Nothing to worry about’
The call had been made and the doctor’s appointment had been booked, yet Amrik wasn’t yet aware that he was going.
“It was my girlfriend Shirelle, who first noticed something was wrong. One night in bed, Shirelle pointed out a lump that she had seen on my chest. I had a look and was able to feel it myself, but I soon decided that the lump was probably nothing to worry about.”
Yet Shirelle wasn’t happy to just forget about it. Undeterred, she rang Ravinder, Amrik’s sister about the discovery and the duo wasted no time in booking a doctor’s appointment for Amrik.
It was only a few days later, whilst visiting his parents’ house, that Amrik found out about the appointment. Much to his surprise, Ravinder answered the door and told him; “____ and I have booked you a GP appointment. You’re going and I’m coming with you”.
Despite his objections to going, Amrik eventually relented.
Being diagnosed was a huge and sudden blow
A short consultation and check-over later, the doctor had made a similar conclusion to Amrik.
“He told me he was 90% sure that there were no problems and that the lump would simply be a cyst. It was good to hear and, although I was sent for a mammogram, ultrasound and biopsy over the next 7 days to be on the safe side, I was 100% not expecting the result I received one week later.
Ravinder came with me to hear my results. I was feeling relaxed about it, which made it such a huge and sudden blow when they revealed that I had breast cancer - I nearly fainted. I didn’t know anything about cancer, plus the details about my own breast cancer confused me – I felt completely in the dark about what was happening.”
Surgery to remove the tumour
Amrik eventually learnt that he had a 2.5cm tumour and had fortunately caught the breast cancer at a very early stage. Amrik needed to have an operation to remove the tumour, but didn’t need chemotherapy. From diagnosis, things moved very quickly and within a month, Amrik was taken into surgery.
“I was quite nervous but it all happened so quickly it was over before I knew it. My operation was at 7.00am, so no sooner had I woken up in the morning for the procedure, I was asleep again because of the anaesthetic. The next thing I know I’m waking up and being wheeled out of the operating theatre. Later on that day, I was allowed to go home. It was such a surreal experience”.
Ravinder was there once again with Amrik all day at the hospital and took him home after the procedure.
Feeling exhausted post-surgery
For Amrik, post-surgery was a time to come to terms with what had happened. In the past month he had been whisked through a series of tests, been diagnosed with breast cancer, received surgery and was now recovering from the operation. The unexpected series of events had been exhausting for Amrik. In addition, he was now taking tamoxifen to help prevent recurrence, which had some unpleasant side-effects.
“As part of my recovery, I was visiting my local Macmillan centre for extra information and support. The nurse pointed me in the direction of Breast Cancer Haven, who she said had a centre very close to me in Leeds. Whilst I had never received complementary therapy before, the idea of having some additional emotional, physical and practical support sounded great to me as I hadn’t been feeling myself since the operation.”
A tailored support programme
Amrik began by meeting with Debra, the Yorkshire centre manager, and chatting about the issues he’d been having since surgery including fatigue and trouble getting to sleep. A tailored programme of acupuncture and shiatsu was then designed to help Amrik to alleviate stress and promote better sleep.
“I wasn’t initially sure what acupuncture and shiatsu were but I believed Debra when she told me they would help me. She was right. The sessions were very relaxing and reduced my sleeplessness. The therapists also gave me some helpful advice for my day to day routine and diet.
Even though I was the only man using the Yorkshire centre at the time, the staff were so kind and welcoming to me. I didn’t feel strange at all being there – it was a shared space for everyone.”
How Amrik is moving on
Amrik may have been lucky to discover his breast cancer early and promptly get the tumour removed, but he wanted his rare experience of breast cancer to be able to help others.
“I don’t feel like I learnt a huge amount about myself from having breast cancer, really. But I’m certainly not as self-confident as I used to be and I’ve noticed how a lot of my old friends have distanced themselves from me.
However, I want to move on now and something that is helping me to do that is to use my experience to help breast cancer raise awareness amongst men. I want more men to know that male breast cancer is possible and how they can check themselves.”
Amrik has been on BBC Radio Leeds and local news radio stations talking about male breast cancer, organised his own huge Bollywood Garden Party fundraiser to raise money for Breast Cancer Haven (which earnt him a double page spread in the Yorkshire evening post) and even starred as the only male model in Breast Cancer Haven’s Yorkshire Blossom Fashion Show earlier this year.
“I think the hardest thing as a man is actually visiting a doctor or telling somebody if you suspect something might be wrong. But doing nothing might make it worse. I hope that by speaking out about the issue and chatting with other men, they can open up about their concerns and find the courage to get themselves checked.”
Getting back to normal
Whilst Amrik is still taking tamoxifen to help prevent recurrence, and experiencing some side-effects from this, he feels like he is moving on from breast cancer.
“I feel so lucky that Shirelle and Ravinder were so proactive in detecting the lump and arranging for me to go to the doctors. They probably saved my life.
I’m also grateful to the NHS for treating me so quickly and to Breast Cancer Haven for helping me to transition smoothly back to a normal happy lifestyle.”
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