New Limitations

There is very little information about recovery after a pneumonectomy and the effects on the physical, social and lifestyle activities of previously healthy and active people.  I loved to run, complete demanding spin sessions at the gym and swimming a kilometre at a time was a form of meditation for me.   Would I ever be able to do that again? Did it matter?  What would my new limitations be?  Here are some hints:

Shortness of Breath: most things will be exhausting for many months.  Twelve months post surgery, I still struggle walking up the stairs but I'm improving every day

Lifting: don't do it

Daily Living: Showering and washing your hair will be a challenge for several months so ensure you have someone to help you

Sports and Fitness: I changed my spin classes to Yoga and 5 months post surgery I started swimming with a kick-board and flippers.  Initially, I could only swim 50 metres but now I can swim that very important kilometre - with kick board and flippers.  My recent attempt at freestyle lasted 50 metres ... and that is OK with me.
Epigastric Symptoms: You may feel you have something wrong in your stomach post surgery and get used to the RURR RURR sounds.  It doesn't hurt, just uncomfortable

You will begin to accept your new limitations as a result of the limited respiratory reserve.  People won't realise the significance of your limitation because outwardly .. there are no visible signs.  Be positive and accept that your new way of life will not be going away.

Modify your lifestyle in order to get the best out of it.

Day 4.  First walk without oxygen.  Loaded up with Oxycontin.

Day 5.  I asked an exercise bike be delivered to my room so I can start the transformation.
Five-Eight minute cycles at a time made an enormous difference to oxygen saturation 

Day 7.  A miracle.

Week 8.  Take as many pain killers as you need to enjoy the best thing life has to offer. The pain will go away.

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.

One more kiss before being taken into the operating room.  How wonderful it was to take my last full breath.

ICU in Isolation - the pain was unberable

Three days post surgery - incredible recovery thanks to Oxycontin 

Swelling is normal and will last for several months.

Myasthenia Returns

Well, its been three months since I've written.  Lots has happened.  I returned to work, but after only 4 weeks I found my Myasthenia symptoms had returned.  I haven't had any symptoms since 2006 and not sure why the droopy eyelid and double vision are back.  I'm sure it's only temporary - I'm not worried.   There could never be anything more frightening than cancer.  I'm currently working through the Mestinon and Prednisone levels to determine the best ratio of medication that will result in me returning to full remission.

Myasthenia Gravis is an autoimmune neuromuscular disorder.  Noone in my family has ever had any illnesses ... so I'm not sure "Why me?".  The condition is characterised by varying degrees of weakness of the skeletal muscles of the body. Certain muscles such as those that control the eye and eyelid movements, facial expression, chewing and talking are effected.  The muscles that control breathing may also be effected.

It's an odd disorder and occurs when normal communication between the nerve and muscle is interrupted.  In Myasthenia, antibodies block/alter the receptors that send the message to the muscle thus the temporary weakness.

The Thymus Gland, which lies in the chest area beneath the breastbone, plays an important role in the immune system in early life.  The gland is large in infants and reduce to the size of a small pea in adulthood.  In my case, the gland was enlarged and in 2006 it was removed.   Thymomas are generally benign and I'm one of a rare few that somehow achieved to be diagnosed with both, in addition to Recurring Thymoma in the lung 3 years later.

The relationship between the Thymus Gland and Myasthenia is not yet fully understood and there is no correlation between high antibody levels and active Thymoma.  As far as I'm concerned, as long as Cancer doesn't return ... nothing is a problem.

Here are two photos.  One taken in 2006 and the other today! Dont worry - it's not as bad as it looks!