Maureen, 72, lives in North Devon with her husband. She was diagnosed with breast cancer in 1995 and is now in remission, but still lives with breast cancer-related lymphoedema.
In this Q&A she shares her experiences and the things she learned…
How did you come to be diagnosed?
In 1995 I discovered a breast lump and was referred to the hospital by my GP.
How did the diagnosis itself affect you? Were there people you could talk to?
It was a shock. My greatest concern was for my young teenage children. Breast Cancer Care gave me all the factual information I needed. A Macmillan nurse supported me through a year of treatment. I was able to talk to her about things I couldn’t discuss with the family.
What treatment did you have – and what were the side effects?
I had two lots of surgery, unfortunately developing lymphoedema in my arm after the second operation. This meant that I could not have radiotherapy but I did have a year of chemotherapy which made me very ill.
This was followed by five years of hormone therapy (Tamoxifen), the worst side effects of which were weight gain and hot flushes.
Did you find practical things (physical or psychological) that helped with side effects and symptoms, and made life better or easier to bear?
Someone recommended ginger beer to counteract nausea during chemotherapy, this helped. Peppermint oil and green-tinted makeup base helped to counteract some of the effects of Tamoxifen.
When returning to work, Occupational Health arranged for a number of adaptations to my car and office to help with the problems of lymphoedema in my hand and arm.
My left hand and arm are considerably larger than the right, because of lymphoedema. I found I had to buy clothes two sizes too large in most high street shops, not a good look! Then I discovered that American fashions generally have more generous sleeves and I can buy my normal size from online shops like Lands’ End and Orvis. The Cornish firm, Seasalt, is also generous in its fitting.
For special mastectomy underwear and swimwear I use Amoena.
Were there any organisations or groups that helped you?
Macmillan Cancer Support have helped me from 1995 to the present. They provide information, advice and support. They have provided all the care and treatment for my lymphoedema.
What advice would you give to someone in a similar situation?
Many things have changed since I was diagnosed in 1995. My local hospital now has a dedicated Breast Cancer department where concerned women can self refer. I would advise all women to check themselves regularly and seek advice immediately if they are worried. You will be taken seriously and get early treatment or reassurance that there is nothing wrong.
If diagnosed, take all the help that is offered. Support groups do help, someone will have a good idea to resolve a problem you thought was yours alone.
Find out all you can about your condition from reliable sources. Don’t believe everything you see online, check the research behind claims that are made.
Make notes and write down questions to ask your consultant. All those that I have seen have appreciated this, they know that patients often forget to ask or feel too nervous or embarrassed to raise concerns so hand them your list.
If possible, take someone with you to consultations, it isn’t always easy to take in everything that has been said so another person can help.
Would you like help others by sharing your story and your tips for living better with a condition or coping with side effects? Passing on the things you’ve learned could make a big difference to someone else in a similar situation.
If so, please get in touch via firstname.lastname@example.org and we’ll drop you a line (and it’s fine to be anonymous if you’d prefer).