Mae's progress

Today is Wednesday, day 5 post surgery for Mae. At last things seem to be getting easier for her. She had a reasonable night last night, didn't sleep much, but also didn't have the terrible yips that have plagued her since surgery. The morphine had been reduced, and today it was stopped altogether and replaced with endone tablet pain meds. Her post surgery pain is moderating as she heals. But she says she still feels like a stranded turtle, her front trunk muscles feel to her as if they just don't work at present.

Mae's dressings were changed yesterday and afterwards she showed me the spectacular extent of the cut, from breastbone to pubic bone. She tells me it is stapled shut. The wound drain lines and urinary catheter remain in place, so she is by no means free to move about easily. But at least today she was taken off the oxygen being supplied by nasal tube, and also the cannula in her neck was removed, together with its collection of input ports. This cannula had been supplying medications directly into a central vein leading to her heart. A good one to get rid of at this point to minimise infection risk. It was replaced with the more conventional line into the back of her hand. Her hands and arms are pocked with evidence of these lines being inserted and removed in various places. Her legs have lots of little bruises from daily injections of anti-clotting agent.  She will have to learn to self-inject for 6 weeks once she leaves hospital.

Today was a busy day, with various visits from specialised teams involved in her care and recovery. The ward stirs at 5am, and Mae was showered again, managed to wash and braid her own hair. Prof Morris always does his rounds at 7am, seven days a week. Other patients of his in the same ward regard him in the demi-god category. He told Mae he was "honoured" to have been able to operate on the niece of his friend, Dr Derek Glenn. It was an honour we could have lived without, but a nice thing for him to say. The pain specialist called in later to review the analgesia meds. Then there was a visit from the stoma management specialist, to explain the workings of Mae's new (and blessedly temporary) stoma.  This little bag system will be with her for some months, but the reversal is a relatively straightforward procedure. She has begun to eat again for the first time without nausea in months. The dietitian team also paid her a visit to explain how to begin to nourish herself and speed her healing with the best foods. The peritonectomy clinical nurse consultant called in to explain in detail what actually happened during surgery, and why. Histology of the tissue removed will give more information about the way forward, what further treatment is required and so on. It is likely that there will be follow up chemotherapy in Canberra.

Mae was pretty exhausted after all that and was a bit relieved the physiotherapy team had not materialised to walk her up and down the corridors again. They probably came but were unable to get a look in! She does have her phone with her now, but texts are probably the way to go for the time being. Mae's Dad came for a little while, and by late afternoon poor Nick was getting agitated that he and Mae had not had any time alone together all day or night.  So David and I left early and went back to Linda's for some toast and a spot of TV. I'm so tired, so bone tired.

Today was the first day I could feel it was OK to slip away for a while.  She is looking and feeling stronger, less like a terrified wounded animal and more like a person who understands what is happening and believes she can survive this horror. Her trust in the hospital and the treatment team is beginning to grow. Every day there is progress, she feels it and we can see it. Modern, evolving medicine at the cutting edge of treatment of previously untreatable conditions is not for the faint hearted. Mae is certainly not faint hearted and this experience may give her back her life.  They are aiming for a cure. Her perspective on living - and ours too - will never be the same again, whatever happens.