Apologies for not having posted an update here for nearly a month. We have moved house and there is no internet in the new flat, no mobile phone signal and the mobile internet dongle I bought to tie us over has no signal either, unless I walk out into the front garden (so that is where I am now whilst JD is having a nap)
A lot has happened in the past month. JD went into the Cynthia Spencer Hospice whilst we were moving house. Initially it was going to be only for a few days. Unfortunately, JD picked up a bladder infection after a few days, due to having been given a catheter. This made her extremely poorly and so she was not able to leave the hospice until this cleared up. Further more, the doctors wanted to make an assessment of JD’s care needs so that I could be given the right amount of support to care for JD at home.
The doctors at the Hospice are in charge of symptom control but the doctors in the Coventry & Warwickshire University Hospital are still in charge of her cancer treatment. And the Oncologist wanted to try giving JD a VERY high dose of steroids to see if this would reduce any oedema (swelling) of the brain and make her a bit more alert again. Combined with the infection, this completely knocked her out. She was so poorly that I decided, together with JD’s mother and the doctors at the hospice that there was no point in continuing with the chemotherapy regime as this seemed to have no benefits at all, other than trying to prolong life. And the way JD was, it seemed it would be a matter of weeks, rather than months anyway.
So the chemo was cancelled.
But then things started to pick up again. JD became more alert, more talkative. Or rather, more responsive. It seems that once the side effects of the massive dose of steroids had worn off, they actually are doing her some good. She is still confused and unable to hold a conversation but generally she will answer questions if they are not too complicated and do not involve describing emotions or actions etc.
After a particularly lucid conversation I had with JD, she said she wanted to continue with the chemotherapy. So I informed the doctors of this. Now she will go to Coventry hospital once more for a final appointment. After that, her treatment and monitoring will be moved to the local hospital here. It saves us a 3 hour trip every 6 weeks.
She can come out with brilliant one-liners and when she laughs when people make jokes, it is wonderful to see.
In the end, JD was in the Hospice for about 2 weeks. I missed her terribly but it was good to have that time to settle in to the new flat. I must thank all the friends who offered help. Some by coming around with manpower, others came with food and yet others kept JD company in the hospice whilst I was running around organising things.
Now that JD is home, we have been given all kinds of equipment. A hospital bed, a commode, a bath lift, an electric rise/recliner chair (which JD plays with ALL.THE.TIME). Our sofa has been raised, a ramp installed for the wheelchair, and carers come in every day to get JD showered and dressed.
More later about these carers and the point of them and district nurses and GPs.