Travels cut short....

Long time no hear, I feel you all saying.... Well we've had a lot on our plates.
Travels were cut short due to Amanda suffering an increasing bout of back pain as we travelled our way around India.  When debilitation finally kicked in she decided it was time to head to Bangalore for scans.  After a series of blood, urine and body scans (MRI and PET) over the space of two days, the conclusion was we needed to get home.  The scans showed
us exactly what we didn't want to see.  Whilst we'd been travelling around India Amanda's cancer had returned and followed suit.
To cut a very long story short.  We flew back to the Isle of Man on 21st January.  Since then we've been in and out of Noble's Hospital on the IOM, Clatterbridge Cancer Centre in Liverpool and the Isle of Man Hospice.  So what's been happening.

Again to compact everything, Amanda still stoically refuses chemotherapy (which was offered as an ongoing treatment, as oncology has no solution for metastasized cancer) to 'slow' her metastasized breast cancer, she also refused most painkillers, until it all became too much.  Now she is on a cocktail of painkillers for neuropathic and pathological pain, sedatives and anti-inflammatories.  The tumours on her spine are pressing on nerve endings causing all sorts of pain and problems.  The pain rarely gets below a 5 out of 10, and she has lost much of the us of her right hand.  Her arms are generally in agony, even with the medications.  The cervical spine involvement is causing the majority of the problems, mets around C5,6 and 7 along with a partial collapse.  She has resorted to two separate doses of radiation to assist with the pain, but even these blasts of 'sunshine' have caused her more suffering.  She was dead against radiation, but when the pain eventually becomes you, and there is nothing else left, we need something to help us become 'us' again.  The radiation was carried out on the sternum (breast bone) and parts of the lumbar and thoracic spine, not really addressing the cervical involvement whatsoever.  This was due to a rather lazy or arrogant radiologist at Nobles hospital who decided he knew better than the Clatterbridge Cancer Centre oncologist and decided an MRI was up and over what was required and a CT scan would suffice.  The next day we flew via the tiny air ambulance from the IOM to Liverpool.  Amanda's treatment consisted of radiation to a thoracic mass and some involvement in the sternum.  Even though everything (pain across the shoulders, neck and down both arms) pointed at cervical spine involvement.  We were hoping to be back from Clatterbridge 5 days later, but due to the Isle of Man Hospice not housing patients after 5pm we were stuck for the weekend.  Visiting hours at Clatterbridge were strange.  1pm until 5.30pm, then 6.30pm until 8pm.  This meant some mornings I would be hiding in the bathroom or behind the bedside cupboard.... Always being discovered and kicked out of Amanda's room.  She needed me there, and I needed to be there too.  The paliative nurses from St John's Hospice said I should be allowed to remain with her, but the nurses on the ward saw it differently.  On the Monday the wind was blowing strongly.  I worried the tiny air ambulance wouldn't fly in such conditions. I was also worried that the tiny air ambulance would fly in such conditions..... I've never been a great flyer!  As it happened everything went according to plan and we returned to the Isle of Man hospice for pain management 5 weeks ago yesterday.
Whilst Amanda wants to assess her pain levels, the doctors want to administer drugs to keep her pain at bay.  She would rather be 'coping' with a 5 out of 10 pain and be aware of everything and everyone around her, be able to meditate and observe her own body, mind and emotions.  The doctors and nurses don't always understand this.  So the smorgasbord of drugs are applied twice daily, with a syringe driver attached to Amanda's leg twenty four seven, which she hates.  Partly because she forgets it.  This means she almost reaches the bathroom then the rubber cord from the needle in her leg to the syringe driver then bungees her back towards the bed..... It's not quite as dramatic as that, but that's what happens in my mind.  It's heavy and cumbersome too.

Amanda asked me to resume the blog to keep everyone updated, as we've been off the radar once again.

Amanda would like you all to send positive vibes and healing energy.  All prayers from every religion, every personal practice are welcome.  Try visualise her doing awesome things in a few months, rather than pondering on her situation in the hospice.  Visualize her as well.  No sympathy or sadness because we are determined to beat this.  Needless to say  Amanda won't be participating in the Parish Walk this year, but I will on her behalf.  I intend to raise money for the Hospice that we are currently residing in.