Jane Deane's (O’Keefe's) Story by Jane

In April 2021 started to get an intermittent discomfort/pain in my right palm which I thought came from pushing, my then 5 month old baby, in the buggy.  I went for physio and in late August, when the pain was still there, I went to my gp who sent me for an MRI. Never in our wildest dreams did we imagine that it would come back as something serious. There was a very very slight swelling on my palm that you wouldn’t notice unless you looked closely. However there was a 3.9 cm tumour under the palm of my hand, between the tendons and the bone.

A biopsy was taken and the results came back as Clear Cell Sarcoma which is an incredibly rare, aggressive form of cancer. Unfortunately, Clear Cell Sarcoma doesn’t respond to traditional treatments like chemotherapy. When the Clear Cell Sarcoma diagnosis came back from the biopsy my consultant asked for a second opinion on treatment plan from Stanmore in London given the extremely rare nature of it the diagnosis.

The decision came back on Friday December 10th, the day after my baby’s first birthday, that my right hand would be amputated the following Tuesday. I had done some research so I was mentally prepared for this decision but it came as a shock to many of my friends and family.

Life with one hand is definitely more challenging than before but I consider myself so lucky to be here. Since I was diagnosed it has taught me to live more in the now and enjoy every minute of life.

Unfortunately in October 2023 it was discovered that the cancer had metastasised to my right axilla and my liver. I was started on medication that October and received surgery to clear the axilla and liver ablation in May 2024.  This kept me cancer free until May 2025 when again there were masses in my liver, axilla and scapula. I have tried a number of different medications since then but unfortunately nothing has shown much promise yet.

I am physically still relatively fit and my body is still functioning well so as long as that is happening we will continue to try to get more time together. I have been referred to the palliative care team in Marymount for when the time is needed. I consider myself so fortunate that I have a fantastic medical team in Cork and for that I am eternally grateful and we have no regret’s with my treatment from the last 4 years. Not many people can say that and I know that I am very lucky.

Right now we are focused on enjoying our lives together with our family and friends and we continue to hope for the best. If we have learned anything from the last few years it is to slow down and not to put things off that we wanted to do. We have had a rough few years but also a great few years and made so many beautiful and fun memories which we would not have done if it wasn’t for my diagnosis. Obviously we would prefer not to be in this situation but we are and all we can do is make the best of it, which we definitely do 🥰 Many people with CCS don’t get the chance to do what we have and for that I am very fortunate.