Hospice doctor to the rescue

I’ve had a week or so to absorb the new reality of not looking forward to any more treatment.  Actually, it’s a relief.  We have been able to book an exciting summer holiday, accept invitations to visit friends and plan some weekends away.  Of course, this is all predicated on my being well enough at the time, and that isn’t always the case.  For example, this week I’ve had at least three really c**p days, but today I woke up feeling almost like a normal person.  This may be due to the very good meeting I had at the hospice yesterday.

I met with a lovely palliative care doctor, the counsellor, and the nicest and most huggable nurse I’ve met so far.  The doctor really led the meeting, but listened to me and addressed my concerns directly.  So I came away with a plan of action: 

• first I’ll contact my GP and ask for a referral back to my original oncologist at Shrewsbury – I do need to have an oncologist of my own, and there really doesn’t seem to be any point in trying to maintain links with the Christie. 
  
  
• Secondly, John and I are to have a home visit from my ‘hospice at home’ nurse next week.  Strictly speaking, I should either be a regular visitor to the day hospice OR be looked after by the nurse, but I’ve chosen to do both – might as well access all the care that’s available. 
  
  
• Thirdly, we’ve adjusted my pain relief so there’s more background support and a bit less fire-fighting with Oramorph.  I am getting an increasing amount of pain in my shoulder and neck.  It’s always bad in the morning, and is definitely affected by driving or doing anything which requires strength and mobility in my left arm.  I was doing some Tai Chi practice this morning prior to going to class, but this brought on such acute pain that I had to stop.  In the end I didn’t go to class, as it’s just too hard to do Tai Chi with one arm out of commission. Typing here on the laptop is getting harder too – I can’t feel the ends of my fingers and it’s touch and go whether I hit the right keys.  To go back to the plan of action:  
  
  
• fourthly, I am to take a small amount of laxative every single day, and not just on an ad-hoc basis. 
  
  
• Lastly, the doctor explained why my abdomen sticks out:  it’s not just one thing, but a combination of the obstructed kidney and ureter, inflammation, constipation and actual tumours.  So, basically, it’s not going to go away.  And somehow I accepted that from her.  I’ve been agonising about not being able to wear normal clothes, ie jeans, trousers, skirts – anything with a waist - but the doctor finally convinced me that I should shove all of them to the back of the wardrobe and go out and buy myself more tunics and drapey stuff.  So I can feel a bit of retail therapy coming up!