Rose is suffering. There's no other way to describe it - high dose methadone through the driver has improved her pain and less morphine has made her more conscious but it's just a different kind of suffering. Conscious in the wretched state she's in is not what anyone would wish for and the daily rituals and humiliations of drivers being changed, enemas and sub-cut injections given, catheters emptied etc all raise her distress to stratospheric levels. She can't communicate beyond more than a few words so has resorted to a continual low grade moaning when awake. New lumps of tumour appear daily all over her, she has suppurating open sores where tumour has literally pushed its way through her skin - the relentless pac-man march of disease is an abomination, a vile atrocity on her beautiful body. OK, I say to her cancer, you've completely won this, please stop now. Enough.
How did it get to this? I don't know what I was expecting but it wasn't this. Should we have agreed to more chemo for pain relief, let the chemo kill her faster? Would it have done? She would have died on the 11th floor of UCH and not here at home but how many weeks and months shorter or longer would it have been, how much better or worse the quality of life - and for how many years are these questions going to go round and round and round in my head. I can't remember life before her suffering began now - none of us can. Today is the College Christmas fair, yesterday the Frost Fair at Rose's school - Felix goes to both and comes home with Christmas presents for his sister. I can't remember going to these fairs in a time when BCRT tins weren't shaken, when fundraising for bone cancer wasn't part of our lives, when Rose wasn't suffering.
I know I'm meant to feel grateful for every precious minute of these years, that I'm meant to look back and give thanks for the time we've had with Rose. Diagnosis, fracture, three months on a traction bed, nine more months in hospital, six months learning to walk again, endless physio, pain, check-ups, feeding tubes, more check-ups, daily battles at school of frustration, pain and exclusion, more check-ups, more pain, relapse, more tumours, more surgery, more pain, more check-ups, more physio, more relapse, much, much more pain and much, much more suffering. The pantomime of keeping one foot in the real world, endlessly playing at normal for friends and family, trying to raise Felix against a backdrop of will-she-live, won't-she-live, the strain, the agony of it all. I look back and I'm not grateful for a single second. The net result is the same - I'm losing my child and if then and not now how much less suffering would she, would we all, have endured. I'm just angry. In the seven stages of grief that I hear so much about I've crashed straight through shock and denial to anger. I think I might be here some time.
