We all love her.....

Three weeks ago today Amanda went in to hospital for some routine treatment, since then everything changed.  To say the past 3 weeks have been difficult for my beautiful wife would be an understatement.... 5 days after the hospital visit (after her pain had settled to what she considered a manageable level again) there was the replacement of oral medication with a syringe driver to deliver her payload of painkillers, sedatives and anti-sickness medication, as the oral drugs were sometimes coming back up.  I made Amanda a promise.  A promise that I would never give up.  So at her request I continued with a couple of fresh carrot juices each day, green teas and two almond milk and goats yoghurt vitamin and mineral packed drinks.  Initially Amanda sucked them down with a straw with great gusto.  This last week though has seen her strength diminish.  For a few days she drank from a pipette... Carrot juices still included to begin with.  Then for the next couple of days just water... She said she would tell me when she was ready.  We shared everything.  Others may think
they knew what she wanted, but she made me promise.  So I waited..... She wanted to keep going, but her body and mind are too tired.  She can no longer drink water.  It trickles from her mouth down her soft cheek on to the pillow joining my tears.  Words no longer pass her lips, she only hears.  Her eyes flick open when I speak or when Robyn's voice sparks her attention.  She recognises our voices.  Her sisters Jane & Sally, her Mum, my Mum and her Aunty Linda.  A week ago small strings of words were still manageable.  Now she exists trapped within her beautiful skin, motionless and hopefully painless floating on a lake of Diamorphine and Midazolam.  Dreaming sweet dreams I hope.  

The past 24 hours have seen many tears.  Kesh and Karen arrived from Banbury last week.  They visited Amanda each day with Sandra and Cheryl.  They brought personal gifts along with gifts from friends in Banbury.  I found it extremely painful seeing a group of her old best friends.  I was quickly overwhelmed and left the room to address my heightened emotions, before returning with a smile.  This last day or so has been moist to say the least.  My moustache and beard combo saving my food from a torrent of nasal mucous and tears.... I was considering trimming, but I think I need to thicken for a while!  Seeing Amanda unable to move, talk or drink really brings it home.  Soon she will leave me.  She will leave us all.  Amanda and I talked openly about death over the years.  It holds no fear for Amanda.  Amanda's death holds more fear for me.  Her fears surrounded an intensely painful death.  This I would never allow.  Although at times I felt others in the house thought I would.  What I had to remember was what Amanda had said to me.  What she had written.  It's not easy when everyone doesn't know, and when everyone knows best.  Amanda's entire body aches not only from her tumours or the swollen abdomen, but from lying still for weeks.  Her discomfort is not all down to the cancer.  In fact 5 days ago she had asked me to pull her in to a sitting position twice.  Just by her arms.  Her hands could fully open and grip, which a few weeks ago they couldn't.  She held a can of Whole Earth Organic Elderberry soda without a twitch.  The days I tilted her forward, she simiply wanted a stretch, a different position.  Sitting on a flight for 6 hours without moving can be a strain on the human body.   We are not made to be stationary.  Her fluid filled abdomen was the main cause of her discomfort over the past week.  Her liver struggling to perform it's everyday tasks.  Tumours blocking bile ducts and liver vessels.  Liver enzymes and other liver related biochemicals heading off the chart..... Amanda's organs are under intense pressure from all sides due to this fluid.  A deep breath causes terrible discomfort due to the fluid impeding the normal journey of the diaphragm.  Her face would contort as she tried for a deeper breath.

My biggest fear is that I haven't done enough.... That I could have done more.... It doesn't matter how many people say 'you've done all you can, you never stopped trying'.... I have now, and this makes me sad.  Having watched how each and every medication affected Amanda's little body over the past 7 months, having made personal records for her.  We both know that 10mg of Diamorphine and 5 mg of Midazolam was enough to be considered 'breakthrough' pain relief in the hospice.  Only once in 7 months was she ever in this amount of pain and it was heartbreaking to witness.  It was a pain spike brought on by an increased swelling caused by the steroid epidural to her cervical spine.  This injection knocked her out for over 4 hours.  She was limp, or as some would say, 'she looked peaceful and comfortable'.  The syringe driver is now pumping 10mg of Diamorphine in to her blood every two hours.  Even if Amanda was pain free she would be going nowhere with that amount of medication in her system.  This is where my fears lie.  How ever much doctors, nurses, friends, relatives or husbands think they know, none of us actually know what is currently happening inside of Amanda's body.  No one knows if there is cancer associated pain in her spine any longer.... Maybe the majority of Amanda's discomfort is to do with her entire muscoskeletal frame work seizing up.  Maybe it's not.  But the point I'm making is that we don't know.  And we'll never know, and this is what destroys me.  At this stage everything is based on assumption.  Amanda can't speak.  Family members stroke her head and ask 'are you alright?'.  If Amanda was alright I can assure you she would not be able to tell anyone due to the huge influx of painkiller and sedative.  A little oral 5mg squirt of Midazolam over the past few weeks has been enough to knock her out for 2 or 3 hours, sometimes longer.  This I find frustrating and upsetting.  It's not that I would be willing to risk Amanda suffering pain unnecessarily, it's the fact that she has always stated from the very beginning of her pain management in Nobles Hospital and then the Isle of Man Hospice, that she would rather be 'coping' with a pain level of 5 to 6 out of 10 and be compos mentis, than have a lower level or indeed no pain and not be of sound mind, unable to communicate with her loved ones.  Unable to control her own situation.  I fear in her mind she maybe trapped under an inescapable heavy down quilt of sedative affects brought on by the painkillers and of course the sedatives themselves.  For allowing this and not letting her see if she can at least cope with her discomfort for a few days thus allowing her to chat with her daughter Robyn I feel that she may feel I have let her down.  I have now played a part in her choices being removed...... No one understands my thought process, therefore it's not really worth discussing.  No one really understood Amanda's thought process in the hospice either (they would constantly offer further pain relief or sedation, where Amanda would rather 'sit it out') therefore they are less likely to understand her second hand thought processes being presented by my good self.

This is how I explained it to our GP, Colin (a lovely empathetic man), when I emailed him on Friday:

'I am well aware of Amanda's condition, how dire it is.  I see what bad shape she is in.  I feel at times if Amanda were to have cut off the top of her finger whilst slicing fruit, she would have been informed that 'the cancer had caused the miscalculation in the fall of the knife thus causing the tip of said finger to fall away from the body.  There's no point reattaching the finger tip, as it is very likely to fall off again at some point in the future due to a similar blade wielding miscalculation.'  I sound frustrated don't I?  Correct me if I'm wrong Colin, if I lay motionless on my bed for 18 days every joint in my body would stiffen, possibly swell.  My muscles and bones would ache and my chest would feel heavy.  Add to this an inability to consume solids and only take fluid I would feel worse due to weakness.  So now in addition to my bed ridden state, let's say I was unlucky enough to have cancer appear in my vertebrae, sternum, shoulder and liver.  Cancer aside I would be suffering physical atrophy at some level and would be suffering extreme discomfort.  Now whilst I'd been lying there, dreaming in a hazy morphine induced state, unable to communicate due to the sedative affects of the syringe driven medication, eating nothing, just drinking water, carrot juice and almond milk the cancer just disappeared, a miracle, full remission.  Yet there I was bedridden and still suffering pain.  Family members and nurses would feel discomfort hearing my groans as they moved me, due to the discomfort of my muscles and joints aching, no one realising my tumours had shrunk in size or disappeared.  Their normal course of action to the discomfort they feel with my groans of pain would be to increase what's in the syringe driver. I too would be unaware of my good fortune, assuming  the cancer was still the reason for my pain?  Not until someone fought my corner to get my bloods analysed and my sedation reduced would anyone actually know anything.  After weeks of draining motionless existence, I may require a few weeks of physiotherapy to rebuild my strength, to get me back on my feet again, wouldn't that be great.  Of course the other more likely scenario is that the liver readings were worse and the pain increased as the painkillers and sedatives were reduced.  But the fact that I could tell people this was occurring would remove the assumptions being made by family, doctors and nurses.  If I was still too ill to communicate and the signs of extreme pain were showing on my face, showing in my eyes, the medication could once again be increased.  If this were my situation Amanda could be at peace in the knowledge she had done almost all she could in her power to assist me.  This is what she would do for me.  She would fight my corner no matter how much opposition she came up against from family, doctors or nurses, Amanda would still meet my final requests.  For only Amanda would have known what I wanted, and I would expect everyone else to respect that and support her in the very tough decisions I had left with her.  That's all I want to do for her Colin.  This is where the conflict arises.  Everyone else 'thinks' they know.'

I'm worn out with it all too.  I suppose everyone thinks I'm mad, not coping or expecting Amanda to sit up and shout 'Gotcha!!'..... But all I have ever wanted to do is support her fully and fulfil her wishes.  Everyone wants what's best for their chronically sick wife, mum, daughter, sister or niece.  I know that.  I know everyone is trying.

I want to thank my Mum for bringing in lovely organic homemade soup and curry.  Thank you to Jane who has also been a great support to me.  Thank you to Coll & Linda for bringing me constant supplies of tea and food, and thanks to you all for your words of support and encouragement over the past few months.

Sunday 18th August Amanda worsened.  On Monday I requested her painkillers and sedatives were increased.  This was the hardest decision I've ever had to make.  And it will live with me forever.  Everyone else thinks it's the right thing to do..... Everyone else feels better.... I feel broken....