ROYAL TRINITY HOSPICE (a look back)

Royal Trinity Hospice and its incredible staff have my eternal gratitude for what it, as an institution delivered and the care the nurses proffered Sammy in her last weeks on earth.  Anything that may be received or interned as a negative connotation is not aimed at RTH or its staff but it is more the horrific situation we found ourselves in.  What the hospice does, its ethos and the duties the staff perform is in my opinion tantamount to altruism.  However, a hospice is not an institution you want to find yourself in, particularly as a 34-year-old with your whole life in front of you.  The same goes for being a relation of a loved one who has been admitted. 

If I am honest, even going near Clapham Common or seeing its name makes me want to vomit.  It instantly evokes all the hideous emotions that we, as a family, went through in those seventeen protracted days and nights.  It stirs up the smells, the noises and the aches of being so utterly useless and pathetic in stopping the inevitable.  That bottomless, freefall feeling in ones stomach, wondering if today would be the day, the tears of utter despair and the conflicting buzz of adrenalin making all your senses far more alert than you care for. 

The district hospice nurse, Paula, came to assess Sammy on the 17th August at our home in Tooting.  At this point we thought we were going to be taking Sammy in for a weekend so she could see what it was like.  However, on seeing Sammy, Paula said she needed to be admitted immediately. As ever, Sammy was displaying her Churchillian valour and trying so hard to conceal her agonising suffering from her loved ones.  The combination of the torment and plethora of self-administrative drugs meant she couldn’t be at home. All Sammy yearned, above all, was to be at home, surrounded by her loving family and to hold her darling Rafiki.  Sammy was at this point so jaded by being in and out of hospital.  However, it was heartbreakingly clear that neither her family nor I could give her the care she needed at home.  It makes my stomach turn thinking back and seeing in her eyes how much she wanted to stay at home. Her home, with her belongings, her bed, her photos, her paintings, the smell of homely home and where she was so deeply loved.  To have no more nurses or doctors in sight. No ear-piercing bleep of the medical machines, no sound of the nurses’ soles shrieking on the linoleum, no smell of drugs, alcohol sanitiser or hospital food (which incidentally all smells the same in whatever hospital regardless of what is being cooked), where you can turn the lights off when you want to and where you can open the window to get some fresh air.  Where she could be on her own sofa and make decisions for herself and not have to rely on others. Having that freedom and independence robbed by ill health as a 34-year-old is utterly crippling.  Especially when you were so vivacious, full of life and love like Sammy was.  It was beyond the comprehension of hideous to observe Sammy having to accept this was the way her “life” was taking her, the antithesis of where she should have been.  We should have been enjoying the summer with a two year old child and having fun with friends.  

As a husband, witnessing the demise of the person you love with every morsel of your being, knowing there was only one way it was going to end was and is sickening.  Every second was torturous, the invisible blades of anxiety dicing your abdomen again and again! The sadness, the fear, the angst is endless and unquantifiable.  You want to desperately numb the pain, you don’t sleep, you mind races and you worry about the “could I have done this better”, “is there anything we missed”.  But the worst feeling of all is that you are completely useless and pathetic to abate the cancer.  You cannot save the person you love so dearly and idly stand by and witness them succumb to death.  That feeling, I believe, optimises the unbearable. 

Following Paula’s assessment on the 17th August, Sammy’s father and I took her down the far too familiar road to Parkside Hospital as there wasn’t a bed at the hospice until the 18th.  I remember parking the car having dropped Sammy and breaking into a crumpled, convulsing heap of tears, fear and exhaustion.   The reason Sammy’s health suddenly expedited in its deterioration was a combination of the increased immunotherapy toxicity along with the entourage of potent painkillers.  This meant that her liver function had begun to fail and her immune system was effectively seeing her liver as the enemy.  On the 18th August 2017 Rafiki and I packed our bags too.  It was the last night we ever spent in our beloved home.  We moved into the hospice with Sammy and it is where we stayed, by her side, until the bitter end. 

The word hospice conjures no pictures of happiness to one’s mind.  I am still in awe of how we as a family dealt with the three weeks from Hades.  How we all pulled together, our cohesion, love and dedication to being with Sammy in her last days was remarkable. There was never a moment when Sammy’s hand wasn’t being held by either her doting parents, sisters, husband or wider family. All telling her how much she was loved and how special she was.  When we weren’t holding Sammy’s hands we were holding each other’s and probably a wine glass.  There were also incidents of rather dark humour one minute laughing the next second crying.  Humour was such a key weapon in our armoury to get through the day.  However, if I were to write down the jokes and incidents you would very likely think less of me.  We did the mandatory daily crossword, had picnics, and did shifts so that we could get out of God’s waiting room and get a drink or ten.  We became a familiar face to the local bar tenders whose profits rallied on us being temporary residents.  They must have thought I had some issues (I did) by the quantity of red wine being consumed and my ability to quickly make the poor soul with me burst into tears along with myself… 

The nights were repugnant and tirelessly long.  Full of bleeping alarms, deathly hacking coughs, lights flicking on and off, and the nurses checking in on us.  But I take comfort in knowing that I went to sleep holding Sammy’s hand each night. Like we did when we were at home.  My bed was right next to hers and darling Rafiki would nestle in between us or in between Sammy’s feet.  Sometimes either Alice, Jemma or Amber spent the night on a camp bed too.  I cannot tell you what a difference it made especially nearer the end.  I had a morning ritual which was to pack up the beds, open the curtains, bring in the flowers from the balcony and spray the room with Joe Malone to try and make it smell of our home and mask the smell of drugs. I would then go and make a coffee which involved walking the length of the ward which was also a stark reminder as you could see who had checked out during the night.

When Sammy had a moment of lucidity, a few days into our vacation at the Hades Hotel I had the gruesome task of having to ask some questions which nobody ever wants to ask nor hear.  Holding her hand and trying to be as brave as possible (failing miserably) I asked her, tears cascading down my face, whether she had any final wishes or whether she wanted to be buried or cremated or if there was a specific church or place she wanted us to arrange.  We had never had such a discussion before because of Sammy’s defiant resolve to survive.   It is a conversation that I remember as clearly and poignantly as I remember making my wedding vows four years previously.   Sammy reposted by asking me what my thoughts were on cremation and burial were to which I duly responded.  She then looked at me, squeezing my hand and said “please will you organise what you think I would like most and I don’t want to talk about it anymore”.  Done!

Because Sammy was so young and fit, her heart, like her mind, was determined to keep going.  She did not take on any food or water for the last eight days.  During this time Sammy’s breathing deteriorated as her organs slowly began to shut down.   The doctors told us that she could hear us and we all continued talking to her and telling her how much we loved her!  Watching such a young and beautiful soul, the love of my life and my best friend having to endure what she did, is in my mind not dignified.  The doctors assured me that she wasn’t in pain.  Without trying to be a petulant I still question how on earth they would know and also queried how they knew if she could still hear us.  Who would have told them…?   That said I choose to believe them in good faith because they alternative was to unbearable to conceive. You will probably think a lot less of me but I will be honest and say there were times where I wanted to ask if there was something they could do to end Sammy’s suffering.  I feel distraught at the thought of willing to aid my darling Sammy’s demise but to witness her suffering was beyond excruciating.  Needless to say, I never asked them despite the last three days where we wondered whether each breath would be Sammy’s last.

Just before midnight on the 3rd September 2017, Sammy was released from the shackles of her suffering.  Alice, Jemma and I were all in bed and alongside Sammy when her Teflon genes finally succumbed.  I am not going to go into the detail but before I left her side for the last time, I brought her eyelids so that they were shut and both Rafiki and I gave her our final kiss on her forehead and said goodbye.