Living with Sarcoidosis

In 2005 I was diagnosed with a rare breast cancer - surgery, chemo and radiotherapy followed but despite all my efforts to get back to normal I never felt well. Always tired, aching feet and legs, chilblains on my fingers and toes, bouts of what my doctor thought was shingles frequent bouts of what seemed to be the flu but with no high temperature……

In late 2007 I went to see my oncologist looking fine but feeling terrible. I told him I was ill but didn’t know why. I’m not a neurotic but he thought I was the worried well! However, to reassure me he arranged an mri scan. This showed tumours all over my body; lungs, spleen, lymph, liver. He thought I was on my way out but did arrange for me to have a bronchoscopy as there was an outside chance I might have an uncommon disease called “sarcoid”.

Luckily, that’s what it was and my husband and I danced around our kitchen when the call from the lung consultant came.
Anything was going to be better than cancer!

He advised against any treatment unless things deteriorated and in the last two years I have learned how to deal with this illness quite well. I eat sensibly, swim and walk the dog regularly (nearly every day) and take a rest/ sleep nearly every afternoon.( I think I would fall over if I didn’t)

I still have aching limbs in the mornings until I get going, horrible hot flushes and tingling sensations and get tired quickly. I keep out of the sun and watch my calcium intake. At 54 I am doing well, still in remission from the cancer, and live a pretty full life although I do have to pace myself. I don’t think of my self as someone with an illness, just very lucky to be alive.

A positive outlook and a great doctor can take you a long way so even if you feel down try to find something positive to focus on. I am English and live in rural Wiltshire.