Thymoma: Grin and Bear it!

I knew early in my diagnosis that I would eventually need to have the lung removed. But, after my last session of chemo it was all too real. There was no turning back, in 4 weeks I would need to learn to live with one lung (45% breathing capacity). I was told my right lung, pleura, diaphragm and maybe the lining of your heart will be removed - Pleuropneumonectomy, I was weak, emotional, shocked and cried uncontrollably. Prof McCaughan handed me a tissue from the other side of the large table and said 'It's OK, almost everyone cries here on Fridays. It's usually the day I tell the patient what I will be removing'.

As told by Jocelyn McLean, Prof McCaughan's personal Nurse, a pneumonectomy is one of a number of operations that provide the only chance of a cure for many lung cancer patients. I don't have lung cancer. Thymoma is very different, however, it had spread to the pleura and given it was spreading around the lung I was treated similarly.

The most important question on my mind at the time was 'How would I handle the pain?" I was told there was no bigger operation than a lung removal and to expect uncontrollable discomfort. Looking back, post operative pain was truly uncontrollable. If I told you it felt like having electric shocks, being branded by a hot steel rod, trampled by horses ... it wouldn't be enough to describe the level of pain I experienced. Severe pain is the most significant factor as a result of the necessary coughing, inability to breath deeply and sigh. Preventing pain wasn't as important as relieving it. I was taking copious amount of Endone, Oxicontin, Indocid (both fast release and slow 12 hour release dozes). I found Indocid suppositories to be one of the best for immediate pain relief - even thought it's used for inflammation, swelling, stiffness, and joint pain ... it worked for me!

I read extensively about the potential of becoming addicted to these drugs and the common withdrawal symptoms. So, I took particular care and diarised every doze taken every day, time and place. Understanding how to manage your own pain is essential before you are discharged, so make sure you practice in hospital by working with the medical team and understand what tablets are to be taken when. Don't try to be a hero and miss out on a doze .. it's not worth it. Obtain the hospital and your case manager's phone number and call them every few days to ensure you are on top of their mind!

Finally, surround yourself with the people that love you and support you. I was rarely left on my own and always had someone around to help me walk, shower and generally get around. My home was my haven.

Don't be shocked by the following pictures ... if only I could have found some on the net before my operation.