Thursday 11th August 2011

Cousin Dorothy departed yesterday and Brother David leaves tonight. All 3 of us spent most of Tuesday out at Hospice with Helen. I had a detailed conversation with Dr A and Kate from palliative care in the morning then David, Louis (via skype) and I met with Dr A and Sheryl the Palliative care social worker in the afternoon. It was not a good day for Helen - she was pretty confused most of the day, didn't eat much and was frequently asking for help and reassurance but couldn't articulate what exactly she was worried about. I found the day exhausting and distressing but having said that it was good to be there and able to offer reassurance and she was quickly soothed by our contact.
The essence of the medical feedback on tests and suchlike is that she did hav a UTI on admission which was treated but has recurred and is currently on antibiotics again for this; she has restarted Iressa (I think is a little itchy since this but otherwise no change), she had an abnormal inflammatory marker - CRP - 180+ (normal is <5) - which they think is too high to be explained by infection alone and could suggest cancer activity or some other significant inflammation like a vasculitis; the bone scan did reveal a metastasis in her R arm but in fact the changes in her upper back were just crush fractures (likely due to bone thinning from being on steroids, not getting much sunshine and not doing much exercise). It's not clear whether the one in her arm could actually have been there for much longer - even back as far as initial diagnosis as this was her first bone scan. The main issue about the arm metastasis is it predisposes her to pathological fracture so anyone helping her to move in bed or stand etc needs to be conscious of not hauling on it. The only treatment thing they would offer is prophylactic surgery to pin it which neither Louis nor I nor Dr A think is a good idea so we will just leave it be for the time being. The other conversation we had was about immobility, decline in function and prognosis. Since she went into Hospice she has declined markedly in terms of what she can do - not sitting up in bed at all (except when propped by the bed itself), no standing or walking apart from with me the other day, not feeding herself, not participating in dressing or washing herself - in fact mostly having a bed-bath so not even using the core strength required to sit up in the wheelchair/bath-chair while she has a shower. When I helped her with food she was not able to figure out how to lift her hand to her mouth without help and became exhausted very quickly. Anyone who has tried to talk to her on the phone will no doubt have noticed a similar issue - she fatigues so quickly she can't hold the phone to her ear plus she loses capacity to think and speak as she gets more tired. Sad though this all is it would be more acceptable to me if I felt she was really at the end of her life - part of a natural letting go process.
Dr A and I talked frankly about prognosis and she was clear (unsurprisingly ) that it is very difficult -even impossible - to predict however she thinks it is possible that Helen could go on for some months.
In this light Louis and I agreed that we would like Dr A to consider a rehab referral and see whether Helen can regain any function as we think this will greatly improve her quality of life.
Yesterday I didn't go to the hospital but David was there and reported to me that not only was Helen a bit better and had some normal conversation with him as well as eating a moderate amount of food (still not feeding herself) she was withit enough for him to talk to her about the rehab plan when they came round to assess her. On having it explained that the rehab people were going to "try to get her up and more active" Helen responded "well they're a bit of a pain aren't they?!" A Helenism which brings wry smiles of recognition to Louis, Susan and I and chuckles of admiration from some others.