Doug Clark

"Not a Good Time" by Doug Clark

AlexDoug2aMy bladder cancer was diagnosed in Nov 2010 following a cystoscopy.  There is never a good time but it was particularly difficult to tell my wife as my father-in-law was terminally ill with cancer.  However, that is another story.

Following a TURBT in Dec 2010, less  than a week after my father-in-law passed away, Mr Shah explained that my bladder tumours (I quickly noted the plural) were abnormal (i.e. aggressive), extensive and grade 2.  His recommendation was a radical cystectomy.  We agreed on a second TURBT not as a delaying ploy but I wanted to be sure that radical surgery was really necessary. It turned out it was and I felt what I can only describe as mourning for the loss I was about to accept.

It was at this point, long before the support group had formed, the Uro-oncology Sisters put me in touch with Michael who had the same operation a few months earlier.  The ability to discuss with another man with firsthand experience, share knowledge and gain confidence was of immeasurable value to me.

In late March Mr Shah successfully created a neo-bladder.  By then I had learned a lot about pre-op nutrition, post-op recovery etc. and was told what I may expect at each stage following the operation.  The nurses especially, the Uro-oncology Sisters, were very knowledgeable and of immense help.  I was fortunate that, apart from the first 48 hrs, my recovery was just as forecast.  The hardest work was the few weeks after the removal of the catheter.  I didn't understand pelvic floor muscles until then.  It was tiring at first but with perseverance it is amazing how you can retrain and relearn about your body. 

All-in-all it was great success until my first scan 6 months later.  I had a malignant lymph node - quite a shock to me and Mr Shah.  A few days later it was excised, a minor op by comparison, followed by a course of chemotherapy to "mop up" any stray cells.  Chemo was to be 6 three week cycles  during which I continued working, not pleasant but quite bearable.  Then my right leg started to swell alarmingly due to lymph-oedema. 

The removed lymph node understandably affected the lymphatic flow.  The excellent specialist nurse led Lymph-oedema Clinic sorted me out with a support stocking and after about 6 months it was under control .  It's now no longer evident.

I feel that being well informed, staying positive and following the best advice were crucial to my recovery.  Nevertheless, the care, support and understanding of my wife has been the source of much of my strength.