Looking after someone while dealing with a life-changing diagnosis yourself is often extremely hard to manage. It takes an immense amount of strength and perseverance, something which Helen, who cares for her husband, understands all too well since receiving her incurable breast cancer diagnosis in 2022.
Helen has been looking after her husband Steve since February 2016, when he was diagnosed with Alzheimer’s. During this time there was little to no support from healthcare professionals, and Helen retired shortly after to become Steve’s full-time carer. In the last two years, Steve’s memory has unfortunately deteriorated significantly, so Helen performs all household tasks and ensures he is supported in every way.
Six years into becoming her husband’s carer, Helen developed a pea-sized lump on her arm after receiving a vaccination, prompting her to seek medical advice. It was at this time that doctors discovered she had lobular breast cancer. This specific type of cancer doesn’t always present in the form of a lump, nor does it show on a mammogram. Helen didn’t have any noticeable symptoms, and her diagnosis understandably came as a big shock. She expresses how, in the beginning, the anxiety and stress of the diagnosis had a greater impact than the cancer and treatment itself.
“The diagnosis was so bad, I couldn’t go out. I had to force myself to go to appointments, and to cook. It was anxiety from the diagnosis and everything surrounding it. The headaches were so bad, I’ve never been through anything like it. For three months, Steve and I had sandwiches, because I struggled to get up and make anything myself.”
Living with a life-changing diagnosis has had a drastic impact on a Helen’s mental and emotional health. She admits that, while she strives to maintain a positive outlook on life, she has concerns about how her cancer diagnosis and needing to go to hospital may affect Steve’s care.
“My biggest worry is if I have to go into hospital. I think oh goodness what am I going to do for Steve.”
Helen suffers with fatigue, and hand-foot syndrome as a result of receiving cumulative chemotherapy treatment for the past two years. Hand-foot syndrome is a painful condition causing swelling and discomfort which prevents Helen from doing any intricate cooking, and also means that she can’t go for long walks as she used to, something she misses greatly.
While communication with healthcare professionals is much better now, Helen explains how she had to seek advice using her own initiative due to lack of support and information.
Her advice to carers in similar circumstances is to be responsible for your own wellbeing and healthcare, no matter how difficult it may be.,
“You’ve got to push and find any information you can. Be positive, just go out and try. And don’t forget to live your life. Enjoy life, make memories.”
Helen attends regular breast cancer support groups, which helps her to feel connected socially to others while in her caring role. She even went on a wellness retreat with other ladies going through the same situation. Many carers benefit from a support network of friends and family, something Helen feels lucky to have. She and Steve both have their own children, who offer to help when possible and are there for emotional support.
She also attends Carers First groups and events and has a great relationship with the team that has supported her since she joined, “I do a lot with Carers First. We love all the girls [Carer Support Advisers] at Carers First. I’m aware of a lot of people that don’t know about Carers First and I’ve signposted people.”
Despite everything she has experienced since both she and Steve received their diagnoses; Helen holds a positive outlook on life and takes each day as it comes. Her story is inspirational and highlights just how valuable a strong mindset and support network can be to the lives of carers.
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