A NOTION OF GRIEF

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. 

SIX MONTHS ON

Dearest All,

The last time I penned an update was a year ago after Professor Dalgleish delivered the dreaded news that Terry’s spawn had come back to camp in Sammy’s brain.  Not just anywhere, but in the ventricle fluid.  The most inoperable and untreatable location that it possibly could have deposited its foul, foul self. 

Words are difficult to assimilate on receiving such devastating news. One feels like time slows down and a plethora of adrenalized emotions overcome one. Slowly stabbing, pinching and scratching the most sensitive areas of one's mental and physical being.  I will never forget seeing the utter devastation that this news brought to darling Sammy.  Her crystal blue eyes immediately welled deep with tears and I can still feel her fingers squeezing my hand because one of the questions she had prepared, was to ask the professor when we could start trying for a baby again.

To receive this devastating news only three months after the all clear being given just added to the rollercoaster of heartache this spineless disease inflicts.  After a monumental 18-month war, with numerous hideous and bloody battles along the way, that triumphantly culminated in victory being declared, the all clear flag being raised to full mast, only then be thrown back into the doldrums of despair is utterly unquantifiable.

That news in March marked the armistice of remission being over and the beginning of the second war.  A war that swiftly and devastatingly took Sammy’s life on 3rd September 2017. The months that ran to Sammy’s passing were so hideous to bear witness to that I am not going to go into too much detail.  Watching someone who you love so dearly, suffer in so much pain for so long is sickening and makes you question all manner of everything that is “just” in this society. 

You live every second in fear and helpless despair, it makes your stomach do backflips which culminate in belly flops on every landing.  As a man, I believe we want to protect, correct and fix problems, particularly when it is someone we care about and particularly when you love them with every morsel of your fibre.  With aggressive cancer, there is very limited fixing any spouse or family member can do.  We can all help and support that person but we cannot fix the root of the issue which is causing your loved one such pain and anguish.  The disease and the way it conducts its business is tantamount to torture.   

The “cure” or treatment is brutally upsetting.  It changes that person in how they see themselves, their mentality, physicality and outlook.  All the while you are living this odd existence and as much as you wish yourself positive thoughts and results from the treatment there is that niggling piece of rationale which scares the life out of you!  You know the treatment might not work and what then?  What is plan C?

I do not believe that Sammy ever considered that she would not win this battle, she was determined to the end.  Her fortitude, bravery and resilience was astonishing.  She had beaten Terry before, why couldn't she do it again?  Her stoicism was remarkable and part of me questions whether she was doing it for our protection.  I would be lying if I said that my mind always remained in said positive camp and therefore to talk about my thoughts in this regard, I feel, would be a betrayal.

A lot of my wonderful family and friends ask how I am and how I have been feeling.  What I hope to do going forward is use the blog to pen some thoughts.  I feel that some may interpret this as a cry for help and self-pity.  It is far from this I assure you but I hope this will give an insight into the world of grief for a 34-year-old widower and it may then help you relate to others who one day have to tread this perilous path.  I am also probably using it as a form of processing and catharsis. 

From the outset, both Sammy and I wanted and welcomed you to come on this journey with us and by including you it made the world of difference to us.  We needed your support along the way and you most certainly gave it to us.  By being open about what Sammy was enduring, I believe, enabled people to feel less estranged.  By being pragmatic and honest to the horrors Sammy faced, made it less taboo and allowed people to comprehend what Sammy was up against.

Now Sammy has died I intend to take the same approach and document my next steps and the journey of grief I am embarking on without my darling girl.  I am including you mainly for selfish reasons, because I need your support!  It is a dark and petrifying journey for which I can see no light or end to.  It is however a journey only I can make on my own but with your support I am sure it will be less turbulent.

In my opinion, talking makes the difference and if Sammy’s story and fight helps give others courage or my thoughts one day help one person with their battle with cancer or grief then my writing this is worth it.  What has happened is so utterly hideous that nothing will validate a second of Sammy’s suffering and the pain, sadness and misery of her no longer being here but I have to try and believe that this might resonate with one person, one day and that it might help them on their journey.

As ever, all my love and gratitude.

Johnsie x

SAMMY EULOGY 20 DECEMBER 2017

Dear All, 

It’s been a while since I updated you.  To be honest, there are some days where I struggle to even get out of bed in the morning let alone put pen to paper.  However, when I can muster the strength and penmanship I will start trying to update the next part of the journey as a 34 year old widower.  You never know, it might be cathartic for me and it might one day, help one person.

In the interim, quite a few people have asked me to send them a copy of the Eulogy.  As a result, I have decided to post a copy it. 

So much love and thank you for all your support.  It means the world and I need it more than ever without my darling Sammy by my side. 

x

SAMMY MEMORIAL EULOGY 20th DECEMBER 2017

As the expression goes, “every now and again, even a blind squirrel finds a nut”!  As you all know, not only did I find a nut but I found my oak in Samantha. 

Although this really was not the plan it is a real triumph to see such a marvellous gathering of the most wonderful people all in one place.  I know that Sammy would be in complete shock to see you all here.  I say this because one of Sammy’s most attractive qualities was her modesty.  I truly believe she was none the wiser as to how truly amazing and beautiful she was and how many lives she touched and enriched in her drastically short life.  The turn out today is testament to her and to the remarkable human being she was. 

I have received countless letters over the past months and I cannot begin to thank you enough for them.  They have given so much strength and support in the darkest of hours and helped keep the share value of Kleenex going up.  Despite my mother’s best efforts to encourage me to respond to your letters I haven’t and I apologise.  But, I wanted to let you know how grateful I am for hearing everything you had to say and how much Sammy meant to you. It is humbling how she touched so many, so profoundly.

One letter said, “Sometimes I think God could be jealous”.  Quite a bold statement…  But it went on to say…

“I think he was jealous of the fun and laughter that Sammy brought to all our lives so that he took her for himself.” 

In Sammy’s short life she achieved so much more than many of us do in a full lifetime.  Her life was so rich in love, friendship, family and laughter. There is so much to say and so little time to do justice to one of life’s greats.  She really made the most of life and lived every day to the full.  Sammy was up for everything and nothing was ever too much. She always saw the positive in every situation and the positive qualities in everyone she met.  Sammy had this amazing knack of making you feel like you were the only person in the room, she made you feel special, always remembering what you had been up to and she never looked over your shoulder.

Any words I speak are woefully inadequate at describing how magnificent Sammy was.  What I do know however, is that I do not need words to describe the hideous void that has been left in our lives and the searing pain in our hearts.  These feelings give the true measure of the person Sammy was and how sorely she will always be missed.

Sammy was the most kind-hearted soul and we are all so privileged to have had her in our lives. She was so effortlessly beautiful, naturally cool and radiated excitement, kindness, empathy, positivity and love in every possible way.  Her sense for adventure was contagious.  People just couldn’t help but be drawn to her.

Her trademark smile lit up the darkest of rooms, her sense of humour was razor sharp and her laughter was as infectious as it was melodic.  It could have turned the hardiest warrior into a puppy dog.  I think that every single letter I received mentioned her laugh and how much that person treasured it and how much they miss it.

Sammy’s heart knew no limits.  Most of you here today know what a cherished and enviable place it was to be held in Sammy’s heart.  I believe that true love is the exact and equal measure of the love you have for a person, reflected back and coupled with implicit trust.

Sammy taught me a lot about love, but one thing I will always take away from it is how unconditional it was.  Sammy taught me to love at 110% and not hold any back for self-protection, but to give everything you had and more.  This is a frightening concept and inevitably comes with a risk of being spectacularly hurt but Sammy taught me how to let go and how amazingly rewarding it was to love so unequivocally and unconditionally.

I was the luckiest man alive, not only to have a place in her heart but also to be able to proudly call her my wife.   Never have I seen such a stunning bride as on our wedding day. I am sure many of you thought the same and questioned what she was doing marrying me… that blind squirrel lucked out again and on that note, I welcome Charlie Talbot to the blind squirrel brigade…

I will never forget the first time I met Sammy.  That beaming smile, her twinkling and dazzlingly blue eyes, her quest for fun, her laugh, her quick wit and her alarming capacity to drink me under the table. She instantly took the piss out of me and I knew she was very special. On the second day, she told me she worked in finance and was a self-proclaimed mathlete. So, she was intelligent, beautiful and a bit of a dork.  She had to have one small downside… 

One small mercy of the last two years is realising first-hand the irrelevance of everything else when compared with the importance of family and friends.   Without all of you, we would not have got this far.  Sammy’s family, including Rafiki, were her everything.  She loved and protected them with all her might. 

With her two sisters, “the sisterhood” was formed and to go against it gave rise for possible force majeure.  A miniature battalion, of strength, love, collusion, support and humour who shared everything with one other.  A crew of few, but a force that could not have been made without such loving parents, instilling such wonderful morals, qualities and characteristics.  Sammy’s love and protection for her sisters and family was limitless up until her last breath.

Her generosity of love, empathy and gifts knew no boundaries.  She was never happier than wrapping presents and meticulously doing so. Because, to Sammy everything was about giving!  She enjoyed giving presents more than she enjoyed receiving them and was never happier than having prepared her excel spreadsheet in October for all the Christmas presents she was going to buy.  Sammy loved Christmas because it was all about her favourite things: giving, celebrating, eating, drinking and making merriment with friends and family. 

Sammy was also very charitable with her time, whether it be teaching her sister how to inhale, giving sage advice to friends, or her husband, or being mother hen at work. She always had the time for others and put herself second.  At work, she was the fifth person in the company that now has over seventy.  She is so profoundly missed not just by her colleagues but clients alike.  Her work played a huge part of her life and it’s no surprise that she was so popular and extremely successful at what she did.

Sammy was an incredible athlete, as well as a mathlete, it turns out...  She had that killer instinct and a wonderfully competitive edge.  Yet she was both a gracious winner and looser unless it was versus me on the tennis court or against a burly, antipodean on the netball court.  Sammy was incredible at netball.  With her long arms and legs, she was like Mr Tickle and let nobody past her.  She made a formidable goal attack and seldom missed with her assassin like accuracy.   Early on in our relationship I gave Sammy a couple of shooting lessons.  She was alarmingly accurate at that too and I quite quickly realised that if I encouraged her too much I would fast become her loader. 

Whatever sport it was, Sammy had a wonderful ability to pick it up very quickly and her determination to win was laudable.  Whether it be winning scalextrics, aged five or racing her father downhill on skis to the detriment of a broken hand.  Sammy wanted to win!  I believe it was this attitude, in part, that kept Terry away for as long as she did.  The only game she wasn’t so good at was freeda.  One evening, early on in our relationship, a game of strip freeeda somehow established itself.   Sammy innocently walked into said game and ended up baring more than she bargained for.

Sammy had the most wonderful sense for fun, her joie de vive was unprecedented and was always coupled with her trademark laugh.  Every holiday, weekend, dinner party, lunch, she was the always the person you wanted to sit next to.  Always up for hilarity and never one to whinge or complain.  All you needed was a little bit of music and she was on the table dancing and WOW could she dance (an attribute I cannot profess to share) and hence one nickname, Just Add Music.  

I can vividly picture her galloping across the kitchen on numerous occasions, clicking her fingers and singing along to whatever song it was.  It was at this point she normally wanted me to dance with her.  As the mild panic of potentially having to use both my left feet settled in, I remembered a technique I had developed that had saved me on a number of occasions from having to dance.  By lifting her off her feet with a big bear hug she couldn’t carry on dancing but was equally happy with a hug. She loved being hugged and I loved hugging her!

Sammy’s love for a party started at a young age, in fact too young an age.  When she was 15 she asked her father if he could give her a copy of her birth certificate so that she could doctor it and use it as fake ID.  (Some questionable parenting some might say, but not me…) It worked to great effect.  So much so that in her inebriated state she lost it.  This caused a bit of an issue when registering our marriage...    

Samantha also had a wonderful sense of mischief.  When sat next to the Managing Director of St James Place at convention in New York and after a bit too much vino, Sammy surreptitiously hid a silver milk jug from the restaurant in his jacket pocket. The next day he awoke to find said bit of silver and to his horror believed he had stolen it. Given her inability to upset or deceive anyone she confessed as soon as she could.

I do not think I have ever met someone who has suffered from a more acute case of FOMO than Sammy.  Her Fear Of Missing Out was not just about missing a party but it was missing out on anything.  I consider that, as well as her competitive edge it was her FOMO that helped drive her incredible battle with the insidious disease.  Her fear for not being with her wonderful friends and family made her determined to win. Even after being in hospice for a week she asked when they were going to let her out.

Sammy’s fight was remarkable.  Her Churchillian valour and courage was untold and despite the constant barrage of terrible news and tough treatments Sammy remained positive.  She demonstrated, with exceptional brilliance how to face challenges head on, with grace and dignity.   Never did Sammy complain and never did she think she would not win.  Her dogged determination and positivity in the face of such adversity is a lesson to us all.   

Back in May this year, at the time of the Do One Terry fundraiser, nobody would have guessed how ill Sammy actually was.  Yet she managed to organise and put on the best charity event I have ever been to and raised £121,000 in the process.  This is testament to Sammy’s character. Helping raise money for others despite her own suffering and illness.  She always put others first.

Sammy really was quite a remarkable human being.  Even up to the bitter end her Teflon genes kept her fighting. Heart-breakingly, the cancer got the better of our beloved Sammy but it has made some worthy adversary’s in its process.  Together, we will get through this and together, one day, we will help to make this most evil disease a thing of the past!

The only consolation of Sammy’s passing is that she is free from the pain and suffering which she carried so gracefully and for so long.  Despite her not being with us today I know that she will be willing us such strength from the side-lines.  Our lives are a less rich place without Sammy but her boundless qualities and wonderful memories will live in US and OUR hearts forever.   

A form of invisible medal if you will. Medals are earned through acts of bravery and inevitably through suffering. People wear them to commemorate a situation or person.  Well, I wear my Sammy medal every day.  It reminds me to be brave in the face of adversity, it reminds me to keep positive when everything is against you, it reminds me to love at 110%, it reminds me to laugh often, it reminds me of the importance of friends and family and it reminds me to live life to the full like Sammy did and would have wanted us to. 

I am sure many of you are wearing this medal too and although it feels so very heavy and cumbersome right now, I believe one day (a long time away right now) it will be a huge comfort.  It will have made me a better person due to having had Sammy in my life and it will be worn in my heart for every day I live, constantly cherished and carried with the most immense pride.

Sammy was the most unbelievable and outstanding wife, daughter, sister, daughter in law, sister in law, mother to Rafiki and friend anyone could have wished for.  She was my best friend who brought me up when I was down and took me down when I was above my station.  We went to bed holding hands every night and I know that had Sammy managed to have our child, she would have made the most wonderful mother.

Our lives are the richer for having known you Sammy but humanity is poorer for you no longer being with us.  We will all aspire to achieve a fraction of your effortless qualities but will no doubt fail.  It is so bitterly sad not to hear your laugh, seek your counsel or hold your hand.  BUT it is the love we had, the love of our family and friends that got us this far and it is this love that will one day give us light in all this darkness. 

In the words of William Penn.  “They that love beyond the world cannot be separated by it. Death cannot kill what never dies.”

INTO HOSPICE

Why am I writing this?  Why am I publishing it in a public domain? Is it a cry for help? Is it for attention? Is it for pity? Is it for my own catharsis? Is it because I want others to know?  Is it helping me face my demons by processing it into words?

I am not sure. Right now, I am honestly not very sure of anything in my life. I hope it is none of the above in isolation but in reality, probably an element of some of them.  My ethos falls into the mantra that a problem shared is a problem halved but as many of you will attest to, I am a private person.  So why am I sharing my inner most feelings and the horrors we have had to endure.  For some reason, I believe that keeping this blog going and giving an insight into what happened is the right thing for me, right now. I am also of the view that only people who want to read it will do so and those that don’t, wont.

The six months from the March 2017 diagnosis was and still is a myriad of incomprehensible emotions and consummate sadness.  I still pinch myself every now and again to ensure I am not in some everlasting nightmare from which I am yet to wake which has culminated in the WORST possible outcome.  I just cannot quite fathom how dedicated Terry was at attacking Sammy.  To go from all clear to hospice in five months shows his hideous resolve.  But, it is the pain and suffering that he caused her that I will never be able to comprehend.  It is etched so very deeply in my memory.  I used to believe that everything happened for a reason.  Having witnessed the enduring anguish Terry inflicted on the kindest, most warm hearted, fun and loving soul, I no longer consider it to be a logic I adhere to. 

From April, Sammy’s trips to hospital started becoming more frequent.  Each stay then subsequently became longer as time progressed.  The frequency and duration of hospital visits had a direct correlation to the amount of treatments, steroids and pain killers that Sammy had to succumb to both in quantity and strength.  It is heart-breaking to delve too deep into how this started to take its toll on my darling Sammy.  However, despite everything that was going on Sammy still managed to orchestrate and deliver, with aplomb, one of the best fundraisers I have ever been to in May 2017.  She raised a staggering £121,000 for three extremely important charities.  The night was an absolute belter and I can resolutely say that everyone had fun which is exactly what Sammy was all about.  Never have I been more filled with pride with what Sammy achieved and the manner in which she did it.  Her dogged determination and resilience to raise funds for others, despite her suffering, in the face of such adversity is a lesson to us all.  Furthermore, she never ever complained about her own situation and pain.   

In June Sammy had a prolonged stay in Parkside Hospital and it was following this that they decided the next step was a two-week course of full brain radiation.  Just before this hideous treatment of last resort started Sammy made the valiant decision to cut her hair short.  She remained stunning as ever!  She was just so naturally beautiful.  The cancer and drugs couldn’t take the twinkle out of those dazzling blue eyes or the tungsten tenacity she was made from.

Every day for the first two weeks of July 2017 Sammy had to go to the Royal Marsden and receive this most aggressive and invasive treatment.  The white, lead lined radiotherapy room is stark and clinically clean.  In the middle of the room is the bed which bears resemblance to an execution table.  Next to it is the Cyber Knife. The highly intelligent, sophisticated and refined brother of the robotic arm that appends car doors on a factory belt.  To ensure complete accuracy Sammy would be physically affixed to the execution bed by a solid moulded head mask to ensure she could not move an iota.  Given Sammy’s claustrophobia, fastening the head mask was a grim warm up to the full brain radiation. 

Each day Sammy made the journey to the Marsden her strength wilted.  With each brain frazzle a new dose of tiredness overcame her.  Not only that but Sammy was exceptionally intelligent and to witness her not be able to remember basic tasks caused her a magnitude of internal suffering on top of the physical torment.  Simultaneously to the treatment there was the continual growth of Terry’s gittish family that added to her cerebral pressure and the resultant agony.   The radiotherapy takes time to kick in and whilst the side effects are almost immediate it would take over a month to know whether Terry had taken a kicking at all.  The cancer, the side effects of the steroids, treatment and full brain radio make my eyes stream as I remember what our darling girl was subjected to.  However, in typical Sammy style, she took it in her stride and made sure she was as little a burden on her family as she possibly could be. 

As July turned to August it was clear that the radio was not able to subpoena Terry into retreat.  On Monday 14th August it was my birthday.  Sammy made the hugest effort to spoil me despite her own anguish.  We had breakfast together when upon she gave me my most treasured present which I wear every day I go to work.  Rafiki cufflinks, made of gold and modelled on him.  They have Sammy’s initials on one side and mine on the other.  As ever she had put so much thought and love into them and absolutely nailed it.  I couldn’t have been more bowled over by them nor cherish them more http://www.hattierickards.com/jewellery/personalised/cufflinks.   I will never ever forget what Sammy said to me that breakfast.  She said to me “when we have children we can get them engraved with their birthdays too”.  She really wasn’t going to give up!  That evening Sammy mustered all the energy she could and we went to our favourite restaurant, Medlar.  It was our last meal out together because later that week we took Sammy into Royal Trinity Hospice.

WHAT A WEEK

Well I’m glad that one’s over.  It can only get better from here!

Last Sunday, I had such bad back pain that the sciatica in my bum and upper thighs was too painful to allow me to sit down.  On Monday morning I booked in an emergency spine scan for the Monday evening because I was worried (in fact in a blind fear) that there was a huge tumour pressing on the nerves in my back and causing all the pain.  By Monday lunchtime I had developed such an acute headache over my left eye that I had lost vision in my right and had also vomited.  I was admitted to hospital for 24 hours and had my spine scan as an in-patient on Monday evening.

Tuesday morning the results came and THANK THE LORD there was no tumour causing my sciatica.  Simply that I have a degenerative condition in my back and it looks more like that of a 60 year old having been involved in too much exercise.  My severe headache, with the loss of vision and the vomiting the day before was more than likely to be due to stress……...can’t imagine where the stress comes from.

Whilst I was in the hospital I had another brain scan and the ‘fluff’ in there has already got bigger than the last scan a few weeks ago.  Whilst the Professor says that this is not too surprising because the immunotherapy that I’m now back on takes a while to kick in, it was not the news we wanted.  I still feel increasingly travel sick, nauseous and pretty groggy every morning.  The ‘fluff’ is meant to be non-symptomatic, but I’m not so sure to be honest.

We went to see Frank Saran on Wednesday, the radiotherapist who administered the targeted radiotherapy successfully to the beds of Terry, Junior & Tyrone last year.  This was another belter of a knockout blow for the week.  The ‘fluff’ in my head is too spread out for him to be able to give the same treatment.  He went through it on the scans and it looks like whispy cotton wool everywhere so he wouldn’t know where to start the treatment and where to stop.  The same dosage to a large area in order to cover everything would kill me off straight away.

He explained that his only option was to give whole brain radiotherapy which is a much lighter and less targeted dosage but to my whole head.  This would involve me having it every day for two weeks, becoming very very tired, my brain becoming slower and me losing all my hair.  Not ideal.  We agreed that we would give my current immunotherapy treatment another 6-8 weeks to work before we set off down this route.

There is lots of logic behind this:

1)      The immunotherapy worked so well for me before so we just have to pray that it does again

2)      Giving me all types of treatment in one go will make it impossible to see which specific treatment works the best for me

3)      (My own logic) I can’t cope with everything all at once so bit by bit suits me OK for now

I have now had two more hits of immunotherapy and I am lined up to have the vaccination booster on Thursday of this week.  This means in 6 weeks’ time when the next scans are due I will have had 4 shots of immunotherapy and 3 rounds of vaccines.  Here’s hoping and praying they do their job.

I can’t really even begin to put into words what this last week has been like to be honest.  I think I’ve been in a daze and shock and I feel like I’ve been repeatedly punched sideways, knocked down and kicked in the head.  BUT, I have been picked up by my incredible husband, my incredible family and my incredible friends.

The week finished with my little sister Jem, running the Brighton marathon for me in 4 hours and 9 minutes.  She showed me afterwards that she ran the whole thing with my name written on her wrist to get her through it and this is what I’m clinging onto at the moment.

UTTER WRETCHENESS

Dear All,

I cannot quite believe I am penning another of these updates. 

As many of you know, Sammy received the euphoric news of being in remission back in January this year.  There was no disease present and she could stop treatment.  Wow!  Words we never thought we would hear in our wildest of dreams.  At last, we could start getting our lives back and Terry could stop dominating our every thought and waking minute.

Sammy went for her quarterly scans last week and we received the results on Friday evening with Professor Dalgleish.  It is with utter wretchedness and a quiver in my lip that I inform you that Terry is defying court orders and has come back to squat in Sammy’s brain.

The scans have highlighted two areas of white “fluff” in the central ventricle.  Typically, a tumour will show as dark on the scan but this is either a very early formation or because it is surrounded by the fluid of the ventricle.  Either way it is a signal that something isn’t as it should be and very upsettingly it is likely to be a relation of Terry getting up to no good.

We are yet to see Frank Saran, Sammy’s brain oncologist or her surgeon James Laban to hear their views. However, the detection of Terry’s bit of “fluff” is a signal that the treatment must start with haste and I write this from the chemo hall in Wimbledon where Sammy is currently hooked up.  It is an odd sensation being greeted by all the friendly nurses who are happy to see you but at the same time also very sad you are back.

Yet again the cancer rollercoaster has sent us into a gut-wrenching freefall into a pitch-black void.  Sammy has been dealt another atrocious hand but she is still sat at the table, elegant, composed, strong and determined to win.  It is so deeply paining and feels so unjust that someone with so much love, life and positivity keeps getting such distressing knock backs.  This conniving disease always has a twist in its tail and there is no method to its madness and destruction.  I don’t think one can ever prepare for its brutality and the emotional devastation it delivers each and every time.  However, if nothing else cancer certainly keeps one on your toes…

Professor Dalgleish is going to add a vaccine into the treatment which he has been developing at the ICVI.  It is a biological serum which has shown great results when combined with the immunotherapy. With this element of treatment all under way we await the opinions of the brain virtuosos to see what they recommend. There may well be some more radiation from the gamma knife.

Whilst it is terribly hard to hear the news we have had we have to be thankful for the team around us.  Not only do we have world leading experts but we have an armada of loving family and friends to help us pull through.  You are amazing and we cannot thank you enough.  Please do continue to be amazing as it gives so much sustenance to the omnipresent fight! 

I will keep you updated as to the next steps as and when they unfold and praying we can get this under control without surgery.  As ever please do pass this on to those who may wish to know. 

With all our love and thanks.

Johnsiex

A YEAR ON...

On November 18th it will be a year since the day I was admitted to hospital and we began the crazy rollercoaster journey we’ve been on since then. 

I spent 4 hours in the scanning machines a few weeks ago to have my quarterly MOT of the brain, spine, liver and lungs.  Everything was really positive.  There was nothing in the brain, nothing in the spine and nothing new or bigger in the lungs or the liver.  Thank the Lord!  Waiting for the results of those scans (a week) is horrific.  It’s quite hard to describe but it’s like the lights being on but no one at home.  It’s very easy to put your body through the normal motions but your mind stays locked in a very dark, cold, solitary and absolutely terrifying room.  The key is to focus on the motions and stay busy and not dwell on the room.

All I could think of were James Laban’s words last time he recommended a spine scan at the start of June‘we need to scan the spine because if the cancer has spread to that, there is no point doing the brain operation’……. in my mind, there is no hope.  I cannot stress how powerful hope is and how negative it is when hope diminishes.  Needless to say, it was an enormous relief that we don’t have to go down that road.

I will have this MOT every three months and whilst I’m sure every time there will be the ghastly fear as to what we might uncover, I am sure the fear will get less and less consuming each time we get a clear set of results.

I still have these pesky little shadows on the liver and lungs but they are too small to biopsy and are not changing anymore which indicates that they are potentially not malignant or may have calcified (meaning old and inactive).  Along with the diet I am trying a range of alternative therapies at the moment, including acupuncture, to try and cleanse my body of these invaders.

The Professor’s Plan is to continue with the immunotherapy until the middle of December and then have some more scans.  If the results are as positive as this recent lot, then we will stop the immunotherapy and see how my body gets on without it, continuing to monitor via scans every three months.  Eeek that’s exciting!

My mind is also going through its own recovery.  I find it very frustrating and quite hard of late to deal with the recent events, everything seems to be going so positively physically, but I still can’t find the equilibrium in my head.  I’m trying to relax in the knowledge that it is going to take time to mentally recover from this ordeal but I find it harder than the physical side because it’s not tangible.  I’m not used to having to work at being happy and content and I’m not very good at understanding or talking about my emotions.  It’s really very exhausting trying to convince yourself and those around you that everything is fine when it’s actually bloody not, it will be, but it’s not yet. 

I’m really looking forward to this Christmas period and think it will be extremely cathartic to see it through and start a New Year afterwards.  Last Christmas was quite a challenge for me and my family and was a bit of a haze to be honest.  It makes me feel very emotional just to think about it so I can’t wait to get another one into the memory tank so I can start thinking of that instead!

My best therapist, my most precious and irreplaceable one, is Rafiki.  I cannot even begin to explain how much joy he’s brought to our house.  He is quite simply the best little doggy (slash Prince) ever.  He is permanently by my side and he has completely, and I quote, “stolen Johnsie’s heart too”.  It’s honestly like he knows he’s been put on this earth for a reason and all that he does (except for when he occasionally pees on the spare bed) is give us more love and companionship than we could ask for from a little pooch.

So a year on, things feel like their turning a corner and finally we can slowly start to get our lives back a bit.  Back on the track we had planned, plus Rafiki – every cloud and all that!  We carry on being amazed by what special and incredible people we have in our lives.  You are the best support that we could ever ask for and have been and still are, so key to us getting through this as best we can.  We love you and thank you.  

YOUR TURN TYRONE!

Apologies for the delay in updating you.  It has been another whirlwind week and yet another week that I care never to experience again! 

As you know, we received the dreaded call last Friday notifying us of Tyrone’s trespass.  I genuinely feel for Mr Laban because I know he deliberated enormously about making such a call just before a weekend. However his judgement didn’t fail him.  As hard as it was to receive, he made the right call! Of course he did!

As planned, we all met on Monday to formulate the eviction strategy.  James and Jo greeted us with their smiles of genuine hope and the reassurance that gives is immeasurable, yet conflicts with the knowledge that we weren’t there for a knees up! 

Our first glimpse of Tyrone on the scan showed him to be an ugly, asymmetric brute, cowardly lodged at the base of the back of the skull.  It would appear he has been on the protein shakes because he has grown at colossal speed.   However, I am assured by the radiographers that melanoma (skin cancer) is known to be one of the quickest growing tumours there is.  Needless to say, it takes a real feat of human skill to be able to deliver the message of a third, brand new, brain tumour in the fashion that James and Jo did. To come out feeling hopeful despite your world crashing around you is an odd sensation. But hope is so, so key!

The silver lining is that Sammy’s senses had been extremely acute to pick up Tyrone’s presence and thank God she did!  The bravery, courage and defiance Sammy continues to display is awe inspiring.  Despite so many knocks (we aren’t talking a bruise here either) Sammy remains tough and resilient. However, she did ask James out of curiosity how long Tyrone would have taken to do his evil business if gone unnoticed.  The response was an alarming 3 months! 

It is sometimes difficult to get a true measure of how Sammy is feeling because she emits such an amazing façade of Churchillian valour.  Yet underneath it she is one of the most warm-hearted, loving and caring beings there is (not saying Churchill wasn’t).  As you also know she is no fool and she is of course extremely scared, as it would be churlish otherwise.  However, it is this mixture of fortitude and kindness which makes her the person she is and the reason that Terry is not getting his way!  This recent leg on the “cancer rollercoaster” has been a plunge into a monstrous abyss, a massive kick in the nads and it has successfully petrified us all!  How is it that Terry’s accomplices have been given a proper decking in the liver yet Tyrone has appeared in the brain?

We have been informed that there are two likely reasons but it is worth pointing out that the fantastic immuno drugs aren’t as effective in the brain as they are in the rest of the body (the brain has a barrier protecting it). So:

1.         Either a rogue cell lodged itself here when Terry bled back in November last year.  However it appears odd as he wasn’t present in the scan in February but this is still the most likely scenario.

2.         Or, more alarmingly, that it might have emanated from the spine.  I.e. when Terry bled prior to operating a cell could have gone into the spine and spawned Tyrone back from the spine. 

As you can imagine, hearing the second rationale rapidly induced bile to the mouth and stomach flips of epic proportions. Suffice to say that we have been living this week in a sense of utter fear, a feeling that I can probably imagine assimilates to being given the death sentenced for a crime you did not commit.  It has been torrid because if it were in the spine the brain operation would not go ahead.

I am not what one would traditionally call a “religious man” but I have said more prayers in the last week than in my lifetime.  It is fickle I know but it has helped and it is an alarming predicament when one finds oneself hoping for “just” a brain tumour!  These prayers have however been answered today with the news that Terry’s accomplices are NOT in the spine! Sammy has just put down the phone to this news from Mr Laban and I cannot tell you the tumultuous relief we are experiencing. 

That said the next battle looms as she still has the small issue that is another brain tumour.  Tyrone needs to be exterminated too and Sammy will go to St Georges on Monday to be operated on, on Tuesday.  It is very odd that she seems so accustomed to another 6 hour craniotomy and another spell in intensive care.

Yet again I please ask for your help?  The comradery, support and love that our friends and family have displayed to date is different class and I cannot thank you enough!  I probably sound like a broken record now and I apologise but I assure you that your help makes every bit of difference, particularly when you make her laugh.  Please keep it coming and hopefully Tyrone is but a minor inconvenience, a small bump in the road to recovery. I am sure she will continue to defy her physicians and she will do this with your help.

As ever, all my thanks and love.

x

IT WAS ALL GOING SO WELL

Those famous last words! 

The amazing news on the liver and two weeks in Mauritius made a dizzying high of euphoric proportions given the lows of the last 7 months.  Alas, poor Sammy has now been hit with yet another blow beneath the belt. Yet again the pendulum of equality has swung against her and yet again there is not an iota of self pity from Sammy.  It is just another inconvenience. it is humbling.

Sammy noticed a familiar dizzy feeling on Monday and therefore immediately requested an MRI scan. The results of which she decided to take on CD by herself to the wonderful Mr Laban as an extra precaution and an extra pair of eyes.  The devastating news is that Terry has left his nephew, Tyrone, in his place.

Tyrone has inherited all the foul qualities of his uncle and has also decided to temporarily illegally squat in Sammy's brain. However our trusty brain bailiff is at our side and ready to evict him at the earliest opportunity.  We have a meeting with Mr Laban on Monday morning but the likely outcome of that meeting is that Sammy is going to have to put that well practised game face on and go for her third craniotomy to dispatch Tyrone!  It is another monster operation on her already very scarred and delicate head. 

As I am sure you will appreciate this has been a huge hit.  A punch to the solar plexus that takes the wind out of one so hard that you question if you will be able to ever breathe again.  We thought we were out of the woods with the brain but the reality is that one rarely is with this insidious disease particularly when it is melanoma.  It is such a destructive disease that does its best to break down ever barrier one has. Physical and mental.  Yet she will not be beaten and she is defiant to the end. Never, ever, ever, give up!

The likelihood is that she will be operated on next week for her third craniotomy (quite an accolade) to remove Tyrone.  I will keep you updated as to the next steps but please fight with her, keep her positive, laughing and strong.  I am in no doubt that this is yet another temporary inconvenience which she will stand up to, dominate and smash again.

That said, it is not good news and another huge battle is looming so that we can win the war.  She has the pluck and fight in her and hopefully one day soon she will be able to awake without the cancer cloud around her. 

Much love

X  

The end is in our sights

I’m not sure where to begin here really. Perhaps with the good news! Johnsy and I went to see Professor Dalgleish at Parkside Hospital on 11th April for the results of the scans taken the week before. These were CT scans which were due at the midpoint of the Professor’s initial treatment plan - after four of the eight sessions of immunotherapy.

We were holding tightly to each other in his office for some good news and hoped above all imagination that he would tell us the cancer had not spread, got bigger or at best, had got smaller.  I had allowed myself to imagine a few times, that he would say everything had gone and whilst that was such an enjoyable thought, it wasn’t realistic ……… or so I thought!  With no real fanfare, Professor Dalgleish told us that he could not see any trace of any malignant tumours in my liver.  It was literally unbelievable and definitely took a while to sink in.  Obviously we both burst into tears immediately and just hugged for five minutes which I think made the matter of fact Professor a little bit awkward…

He reported that he can still see a few tiny shadows on my lungs but these have got smaller after my immunology.  The fact that they’ve got smaller does indicate that they are probably cancerous, because they have been susceptible to the drugs.  BUT they are so tiny small that he can’t tell what they are and he can’t biopsy them to tell what they are either.  There is also a very small chance they are benign.  As I’ve said before, he seems to be very confident that if there is ever anything nasty that pops up in the lungs, he can get rid of it.  So for now, his advice is that no action is necessary in this area and that we should simply keep an eye on the blips in the forthcoming scans.

He was extremely interested in what we’d been doing on the nutrition front and how I’d changed my diet.  His professional opinion is that this will have hugely complemented the drugs.  It does say in so many books I’ve read, more people who survive are those that take a multi-faceted approach to beating the disease and not just sitting back and relying on the drugs alone.  All hail the green juice and a positive mental attitude!!

He has recommended that I finish my treatment plan which means two more sessions of immunotherapy on 31st May and 21st June.  This is to give my system an extra boost designed to help prevent recurrence any time soon.  After that, and for the foreseeable future, there will be MRI scans of the brain and CT scans of the body every three months to monitor for anything rearing its ugly head.  As Johnsy said the other day, I’ll be better off than most for the time being because anything that comes up will be spotted straight away.

To say this is pretty awesome news, is an understatement!  Happiness, relief, respite, joy – none of these words come close to covering it, it’s just extremely emotional.  It gives me such confidence that even if Terry or any of his mates do come back, we’ve beaten them before and can beat them again.  We’re about to go off (with hats, sunglasses and the most un-dorky rash guards possible – well done that Mara Hoffman) to Mauritius for two weeks to allow this turn for the better to really sink in and to properly relax and chill out.  It will be our first holiday after seven months of hell, so a much needed one!

Whilst away we want to start thinking about our fund raising plans so please watch this space, feel free to send any good ideas to us.   We want to support St. George’s Hospital Neuro surgery department, Cancer Research (melanoma/skin cancer) and Paul’s Cancer Support in Battersea.  All are wonderful institutions and have been such a big part of our journey so far.

We also want to have some sort of celebration to rejoice with you!  Again, there are no words that can convey how lucky we feel and are to have such an incredible, amazing, unwavering and unbelievable support network.  You all absolutely rock and we love you. Watch this space.

Food for thought

This update is mainly focussed on diet and nutrition as I’ve learnt so much.  To be totally honest, I’ve done a complete U-turn since initially embarking on this unwanted journey.  I am not embarrassed to say that I didn’t previously understand the real impact that what I put in my body could have on the disease.  The following is not at all meant to be a lecture but just information which hopefully can be helpful.

Firstly, sugar is the absolute enemy.  I can’t stress enough how bad it is for cancer and it is astounding that the government don’t use the way that PET scans detect tumours as an example to illustrate why sugar can be so harmful.  In layman’s terms, your body is first injected with ‘radio tracers’.  These radio tracers are made out of a glucose substance and produce radiation are when they are gobbled up by the cancerous cells i.e. these cancerous cells home in on the glucose cells and use them as food to grow bigger.   Alarming!

Trying to cut sugar out of everything is extremely difficult.  It’s been easier for me to get rid of the obvious things from your diet like chocolate, sweets and cakes etc. Sadly sugar is actually in pretty much everything that has been processed, including wine, which has definitely been the hardest to give up.  I’m not an alcoholic but wine is so enjoyable in so many ways! There is also sugar in fruit which is much better because it’s natural sugar, not refined, but even that should be kept to a minimum.  ‘Bad’ sugar can be replaced by natural sugars for things like raw and courgette brownies – these are actually so good and as unlikely as it is, I’ve found the Deliciously Ella cook books have some really yummy recipes.  There are also some that I wouldn’t touch with a barge pole!

Generally the body functions best on an alkaline based diet.  Our Western diet is 60:40 acid to alkaline and really humans are meant to be the other way round, some even say 80:20 in favour of alkaline.  Our bodies therefore already have to work to process our diet.  It’s so illogical to me what is what, for example lemons and limes create alkaline in your body and are really good for you.  Generally the things that create acid in your body are all meat, all dairy and all sugar including fruit.  Trying to cut out all of those things leaves very little to eat.  The more vegetables to eat the better though, and if a red meat fix is needed then it’s better to have it lunch time so you’ve got time to process it before bed.

Juicing is an amazing way to get good stuff into your body.  Trying to have two juices a day is my aim at the moment and these are made of a combination of stuff like lemons, limes, ginger, celery, kale, spinach, fennel, carrots, apples, pears and cucumbers.  It is good to have something raw before you eat any meal in order to prepare your digestive system so a pre meal juice as a starter is a good way to go.  It’s best to keep the vegetables up (anything green is v good) and the fruits (and therefore sugar) down so there is roughly at least an 80:20 mix.  The book I’ve been using which is super easy and actually makes it enjoyable (not least as the author is the ex-Diet Coke man) is Andrew Coopers ‘Juiceman’.  It’s awesome and has smoothie, shots and tonics, breakfast and cocktail recipes in it too.

Immunotherapy and radio surgery

On the medical side, I’ve also had my second round of immunotherapy which has created no unmanageable side effects so far.  That being said I’m crazy tired, have some mild skin reactions and been ill twice in the last few weeks which is very unlike me.  Two down though and only two more to go before we have a review and check the drugs are doing what they should be.

I also had my mask fitted last week for the radiosurgery that’s booked for tomorrow.  It was pretty gritty - actually I can’t believe how gritty it was!  It’s like those gum shields we used to buy that you mould themselves to your teeth when they are hot.  It’s meant to keep your head and face as still as possible throughout the treatment of the rays.  The plastic is heated up and then spread and pushed over your whole face as tight as possible and stapled to either side of your head.  A hole is cut for your nostrils whilst the mask is drying so that breathing is possible.  There are no eye holes and you can’t really spread your jaw to breathe through the mouth either.  For the claustrophobic amongst you, it’s like going on a caving expedition only far worse.

The making of the mask takes around 15 minutes and tomorrow’s procedure involves wearing it for around 90 minutes.  Needless to say it’s not something I’m hugely looking forward to BUT, once that is over there is no more treatment due to the brain which is a really really really good thought and cause for celebration. WHOOP!

I could continue writing for such a long time about so many different aspects of the road we are all on.  It’s emotionally and physically draining for all of us involved but we are where we are.  It really feels like tomorrow is a massive step out the way and after that there is just one type of major hurdle to compete with. 

I’ve said it before but I hope it doesn’t sound any less meaningful – thank you all so much for everything you continue to do to help get through this.  From incredible presents we’ve received, messages sent, shoulders used and amazing positivity; you’re the best and can’t be thanked enough.

The professor's plan

It's taken a while to get this next update out but wowee has it been another rollercoaster since the start of last week.  There's so much to say in this update, and a lot of it is quite factual as we've learnt so much as well.

We went to meet Professor Dalgleish at St. George's on 6th January.  It was an NHS appointment and the nurses and Doctors are so overworked that I don't think he'd had time, in fact he definitely hadn't had time, to read up on my case or familiarise himself with what we'd been through so far.  He didn't even have the actual MRI scans of the liver that had been produced before Christmas in the same hospital. , he quickly became as familiar as he could and started to give us a breakdown using very medical and large words of what the plan was going forward.  It's fair to say that none of us really understood his explanations in the first ten minutes.  It quickly became apparent though, that he is a Professor in the true sense of the word and a pioneer and expert in the treatment of melanoma! We took some comfort from the way his eyes lit up when he explained about my melanoma – this is a man who knows our enemy.

Having reviewed the MRI, the Professor said we should assume that all the shadows they could see on the liver are suspicious.  His plan for my treatment is three months of chemotherapy and followed by three months of immunotherapy.  There will likely be some overlap of the two but that will be determined later down the line.  Incidentally, we had earlier told him that we would move to being a private patient (thank god for the policy with Pru Health) which he was incredibly relieved about as it's virtually impossible to get the NHS to agree to prescribe those two types of drugs exactly when he wants to deploy them.

Just as an aside and because I didn't know before, I'll set out the difference between the two drugs.  They are both taken via a drip in hospital over a period of time and the side effects are the same - although you are less likely to have such severe ones on immunotherapy. Chemotherapy kills everything i.e. the good, the bad and the ugly.  Immunotherapy boosts your own body to work and kill the disease.  The cancer cells are nasty cells that wear a cloak so that your own immune system doesn't recognise them as bad cells so it doesn't attack them.  Immunotherapy helps to de-cloak the bad cells and gets your own immune system to recognise them as evil and kill them off.  Pretty impressive.

The aim Professor Dalgleish plan is to shrink the melanoma using chemo to a size where the immunotherapy would then be able to treat it.  His prognosis is that within six months - one year we could have this all under control.  The thing about melanoma is that my body in particular seems to be genetically programmed to produce it at any given moment. So whilst we can make go it away we don’t know when in the future when it might come back. We will learn more about this when we next see the Professor.

So death is not around the corner and Professor Dalgleish was adamant that we had to remain positive and that we could be the ones in control. That being said, I particularly, felt very emotional after that first meeting (i.e. had full control of the whimps baton!), I think I was just so scared about what he was going to say.  It was also that the journey we were about to embark on could be so long.  With the brain surgery, I was much better at dealing with it, because it was adrenaline fuelled, there was no room for thoughts and we had to make choices fast. This bit has not suited me and I really feel like the worst was just starting. 

Good news

The day after we’d first met, the Professor rang and gave the one bit of positive news that we've had since this all started in mid-November.  He had reviewed the actual scans from the MRI team and the cancerous lesions he could see in the liver was much smaller than he thought and small enough to be receptive to going straight to the immunotherapy and skipping out the chemo step - Hoo Bloody Ray! 

As an aside, he said that technology and high definition is so good these days that if you scanned anyone's liver it was likely to come up with showing something 'abnormal' but that the abnormalities can usually be explained as benign lesions rather than anything suspicious. 

The pathology results from the tumours removed showed the cancer had a mutation in it which makes it receptive to the drug I've been put on and which I will have every three weeks for eight cycles.  It involves going into hospital and getting it intravenously via a drip every three weeks.  After the fourth cycle then Professor Dalgleish will do a review of what effects it's had - hopefully big ones!  It is worth mentioning that this drug has only been available first line for patients for a matter of weeks.

mongst other things he said that Melanoma is skin cancer which has manifested itself in my vital organs.  It would likely have originated either on the conjunctiva (eyeball) back in 2011 or that it may well have originated in a mole that has since been removed or still there.  It is likely that my immune system has been fighting the regrowth of this melanoma in other places for the last four years and that actually being pregnant is more than likely to have been my detriment last year.  One of the mechanisms of being pregnant is that your immune system “switches off” so that you don't reject the baby, and that's when mine turned off and allowed these tumours to grow.  Melanoma is one of the fastest growing cancers out there. 

Treatment begins

So with trepidation I went to Parkside hospital on Wednesday 13th January to start the treatment.  Physically there is absolutely nothing to fear at all, in fact mentally there is nothing really to fear but it was pretty grim.  They make it as nice as possible and the room is small with only 8 patients in at a time.  But you still have to sit in a chair and be plugged into a drip just like on the adverts.  It's really weird and quite hard to explain but I think it makes the reality of the situation come home.  We were there for three hours in total and looking on the bright side - the first one is over and no major side effects so far.

We also had our first meeting with Frank Saran (brain oncologist) that same day, he's the man who is going to do the radio surgery to the tumour beds in the brain.  He is super upbeat and like the Professor, clearly loves what he does.  He is going to give a 90 minute treatment of radio to the brain.  The rays that they use on their own are not meant to be harmful to your brain, it's only at the point when these rays cross that they zap whatever is in sight.  I have a mask made especially for my face to hold me as still as possible whilst these rays hit my head and the meeting points of the rays are localised to the points where the tumours were.  It's not meant to hurt and you don't have to be in a tube but apparently the mask is pretty tight, as you can imagine, as they don't want to get these rays in the wrong place.  I'll go in for a whole day at the Marsden and have CT scans as well as another MRI scan for him of the brain, the mask will be made and the radio surgery done.  Generally that's all that's required so we will review once he's done his work and hopefully need nothing more.  It will be done around mid-February.

Wednesday 13th was a pretty big day in my life and I was left completely exhausted by the end - a combination of the drugs as well as all the emotions gone through. 

Now though, there will (fingers crossed) be no more surprises and we can just get on and win.

We continue to get amazing presents, cards, letters and messages which we are, still, so grateful for.  Thank you (doesn't even cover it) so much.  The plan for the next few weeks is to drink and eat as much nutrients as possible and sleep as much as possible so that this human body is ready to see off what it needs to.

Big love from us both xxxxxxxx

The battle resumes

Dear Greatest Family and Friends Ever,
 
Hello and Happy New Year! 
 
I'm not going to try and go over the events that Johnsy has captured below and over recent months, mainly because he has done it so well. 
 
Anyhow, it's been a roller coaster since mid November, that's for sure.  I did not expect to be sitting here writing this and to be honest I still sometimes wonder if this is actually happening to us!  Most of the time I'm absolutely fine but there is the odd occasion that the brain start to whir (rare) with questions such as how long is the treatment going to last, what does it entail, when can I return to normal life, am I going to lose my hair etc.  The hair one is weird, I've always thought of others that if I was in their shoes that I wouldn't care about the hair, but I do - me with a bald head is a scary prospect!  Another question that pops it's ugly head is what is the ultimate goal of the treatment and also the main one, when am I going to find my puppy?!
 
It is super frustrating not being able to bosh this crap and move on.  I've come to understand recently that it's going to take longer than that and the best thing I can do to get this over as quick as possible is to rest as much as possible and chill.  Easier said than done.  The afternoon naps whilst nice on a weekend are a bore in the week and it's a pain not to be able to do any sport or go to the gym either.  It's also been suggested that I give up wine........I mean......are you joking?!  Even if I live a shorter life, I'm having wine.
 
As you know, we have an appointment with Professor Dalgleish on Wednesday this week and he is apparently the don of this type of cancer.  This is our first oncology appointment and he hopefully will provide some of the answers to the questions above.  He will give us an initial plan on how to tackle the cancer they have found in the liver. They have also found some indeterminate shadows in the lungs which he will give clarity on too.
 
The two of us and our family have had such a happy and spoiling Christmas and New Year and it's been a welcome break from dealing with the harsh reality.  I've used it to get some sleep (in between bread and cheese) and gather some strength.  So it's time to put the gloves back on and with the Eye of the Tiger theme tune in the background, face the music again.  We can do it!
 
I know Johnsy has said this already but I cannot echo his words enough (on this occasion!) - THANK YOU with everything I have for all the love and support that you have given us.  It means the absolute world and makes such a difference and makes us able to be strong. 

Strong we will be I promise and beat this sh1t and I'm already looking forward to the celebration at the end.
 
That is it I think, keep everything crossed for Wednesday and either me or my unbelievable husband will update with news after that.
 
So much Love,
 
Sammy x x x

Junior, you can do one too!

Apologies for the delay in updating you all.  ‎Things have been quite hectic of late. The mantra that domestic chores are never done is ringing true coupled with having to try my hand at being a florist.  I am not a natural!

As some of you know, on Wednesday 2nd December Sammy had to‎ put that well practised game face on and go for her second craniotomy in as many weeks to dispatch Junior! The fact that she walked herself into the anaesthetist’s layer is something of a marvel!  Sammy’s determination and the bravery she is displaying is a lesson to us all!  It is awe-inspiring, humbling and makes me/us immensely proud.

Into surgery she went and five hours later our wonderful surgeon James, called to say the operation went as well as it could have gone and that we could go and see her in intensive care.  Sayonara Junior!   Again she had a substantial bandage and a million wires coming out of her but she recognised me/us!  Not only that but also her speech seemed intact (a bit slurry, but no worse than me after 3 pints and unsurprising given another monster drugs binge…).  As for her memory, it is as ever, à point.  When I saw James shortly after the op, the restraining order went out the window, this time I did hug him and again swiftly burst into floods of tears! I can’t quite put into words the sense of relief that we all felt.

It is incredibly sobering to think that when we first went into A&E on that fateful day, we were told that unless they operated on Terry then Sammy might not see Christmas!  James and his amazing team at the Atkinson Morley Ward have smashed Terry and now Junior.  Jemma gave Sammy a hilarious but appropriate star for our Christmas tree.  James you are the star on our tree. 

Sammy had to spend the night in intensive care again to be kept under constant supervision given the nature of the operation.  Again, I cannot reiterate the care and attention she received.  As I have said before, nobody wants to spend time in intensive care but it is incredibly reassuring to know that when one does visit as a “client”, the care you receive is different class!  What shocked and angered me however is that the chefs get paid more than these nurses!  It is as appalling as is the food… 

That night the nurse sweetly allowed me to leave Sammy her mobile and the following morning, Sammy sent me a text and it went like this:

“I am doing something you can’t”

“What’s that?” I replied

“Taking a pee in bed”… 

Her sense of humour was evidently still firing on all cylinders.  I am sure she will kill me for sharing this but I think it is humour, love, courage and sheer bloody-mindedness which get people through this ghastly illness that affects so many of us.  Sammy has all of these attributes in spades and all your support validate these reasons to fight.  YOU ALL ROCK!  This is not to say that she will not have dark days but this is when you come in again and again and again.  Your continued support makes me well up, because when we need you, you have been there and I cannot begin to thank you enough! 

Junior, despite being half as big as Terry, was in a much more palpable location physically.  The operation required a barnet chop that may be deemed “cool” in the East End by some “trendoi” but generally it isn’t a look a girl would typically go for... “A short front please Nicky Clark…”  They had to shave the front of her hair so that they could make the incision in her hairline.  The scar is impressive.  It runs from her left ear along the hairline and down to her right hand temple.  It is extremely neat, 12 out of 10 again James.  I am adamant that once the hair grows back it will not be visible in the slightest. 

I think Sammy found looking in the mirror for the first time tough.  The scar, the stiches, the swelling and two black eyes is tough for anyone but especially when you have gone through everything she has mentally already to then see it physically is another blow.  However, she took it in her stride and the hair is growing back, the stitches and the swelling are gone and Sammy radiates beauty from the outside as she does from the inside yet again.

Due to the fact that she had two extremely traumatic surgeries in such close proximity it was hardly surprising that this one took the wind out of her sails and the recovery has been a tiny bit slower.  Yet, she has recovered much quicker than anyone would have expected. She continues to stun the surgeon and nurses and this is down to her can do attitude.  On the Sunday after the operation when I arrived at hospital I found her sitting on the end of her bed looking out the window.  She had dressed herself and packed her bag and it is an image I will never, ever forget.  Because on the Friday I had pretty much had to carry her to the bathroom.  She looked at me and said “I need to go home”.  There was no way I could have said no, despite her having had some morphine for the pain only hours earlier she was determined to be home and it was the right thing to do.

Sammy continues to get stronger each day and she is still in need of her afternoon naps but she is busy being festive and doing as much as she can to have fun and look for the best in everything.  She has decorated the tree and we are ready for our first Christmas in our own house together.  We are going to have a wonderful Christmas and make the most of it until we have to face the music again in January.

The bad news is that it has been confirmed that it looks highly likely that it is Terry’s ghastly henchmen that are in the liver.  Although it was always a possibility, it is yet another piece of torrid news to add to the long list from the last few weeks.  So, the next steps are to rest up until January.  They will then use radiosurgery to zap the tumour beds in the brain.  This is not surgery but a very intense laser which is the belt and braces to the surgery.  We then meet with the oncologist Professor Dalgleish on the 6th January who will give the prognosis and the next steps and treatment that Sammy will have to undertake.  The great news is he happens to be a leading expert (widely acclaimed) in Melanoma and a pioneer in immunology.  Incidentally he is also based at St Georges and Parkside.  So we have yet another master of the profession in our team and if Jimmy Carter can beat Melanoma aged 90 then we must stand a fighting chance because Sammy is fit, strong, determined and is really due a break!  Not only that but she has a mass of support from all corners of the globe.  It is truly humbling how many people are wishing her well and praying for her and that is because she is incredibly special. 

It is on this note that Sammy’s sister Alice secretly started a campaign to get some “others” to send her a message.  The response has been phenomenal from those that have never met Sammy but have heard her plight.  Not all the messages have been uploaded yet but a showcase are housed under messages.  Thank you a million to those who have taken so much time and effort to send their wishes and love because it puts a stride in her step and it is amazing how kind people can be.  Please do pass this blog on to anyone you think may also want to contribute as her fight is going to go on and on.

Again our families have been outstanding and we are both incredibly grateful to you. Our friends continue to be truly phenomenal and Sammy’s office never fails to keep surprising us with their outstanding support.  Thank you again to all of those who have wished Sammy well who haven’t met her and a particular thanks to Harry Collins for setting up this blog!

Wishing you all a very, very happy Christmas with all out love.

x

Do one Terry!

As most of you know the operation went as well as it could have gone and Sammy has made a spectacular recovery!  Her balance is back, as is her hand-writing and she looks a million dollars.  You simply wouldn’t have a clue that she had a craniotomy 10 days ago, save for a very neat (quite long) scar at the back of her head. The wonderful nurse Jo, gave the surgeon 9 out of 10 for its presentation (I don’t think she ever gives a 10).  I personally would have given James 12 out of 10 but as you know I am biased…

The recuperation period for such a procedure is typically 5-7days in hospital.  Samantha, being Samantha, tried to have herself discharged on the Monday!  Being a boring spoilsport we asked that they keep her for a bit longer.  She came home the following day...  I am told marriage is all about compromise...

When I say home, I meant Tooting’s very own Eden Project, the house is a hundred degrees and is full of every spectacular flora known to equatorial man and smells, very floral!  It is mind-blowing and I am not joking when I say that the first attached photo only captures about two thirds of your amazing flowers!  What it doesn’t show however is all the amazing other presents we have been sent.  The amazing balloons, potions, scents, creams, candles, the delicious food, the chocolate, cashmere socks, cheeses, books, cards, emails and texts of love and support.  It keeps coming and it really is chicken soup for us right now.  We are on first name terms with two delivery men, again no joke! 

We truly didn’t think we had so many friends but your kindness and support is true sustenance for this fight and we are going to need every morsel of energy we can muster.  I cannot begin to thank you all for being so utterly brilliant!  It is only in times like this you realise how lucky one is and I and all the family are forever in your gratitude.  It is very sobering that some people have to face these battles on their own and we consider ourselves very fortunate to have such an army of support. 

Throughout this whole ordeal Sammy has remained in amazing spirits.  Evidently, there have been some teary moments because what we are up against is petrifying and it would take a fool to not be scared! Courage is about masking ones fears with rational thought and pluck and Samantha is doing that with unquestionable aplomb!  It is also about letting go at the right time and talking through ones fears which she has also done.  It is amazing what grit and determination we humans have when we need it.  Although I am no athlete, Samantha is, and I know that she will dig deep and when we feel like we are totally drained and exhausted we will know we have twice/thrice as more to give.

Humour is the other ultimate weapon Sammy has in her armoury and I will share a couple of things that have cracked her up amongst many other things:

·         Turmeric biscuits… The wonderful person who gave these to us genuinely hadn’t thought of the connotation… We have been told that turmeric is very good for beating tumours.  More turmeric please in that case but please not in biscuit form as I am afraid they are revolting.

·         Someone sweetly gave us some true or false general factoid cards. Below is one which we read after coming out of intensive care, it reduced us both to tears of laughter.  The answer is thankfully false!

These are just two anecdotes I wanted to share but there are clearly more.  You have all been so amazing at keeping her smiling and this is key to this battle.  I therefore please ask that you continue in the same vain?

The bad news is that we got the results back yesterday and they confirmed that Terry is of the melanoma variety. A distinctly foul breed!  This makes this most inconvenient of weeks a little more rubbish.  It has been advised that Junior is related and needs to be sent packing too.  Whilst we were prepared for the worst, hearing it isn’t always easy but as always Sammy marches on and has taken it in her stride!

The result is that we need to go for another, more complex operation and we are taking Sammy back to St Georges now so that they can operate tomorrow.  Whilst I don’t in any way want to over-dramatise this operation I think it is worth pointing out that junior is in a much more sensitive position and the operation is more complicated.  However we have a James Laban!  And yes my man crush is now verging on restraining order level.  Again we are overcome by him and his team and consider ourselves fortunate to be so close to the best place possible for this type of surgery.

Jane asked a pertinent question of him.  If a relative of his was faced with the same prognosis would he choose surgery.  His response was an unquestionable yes.  If Mr Laban is confident he can get the little fu(ker then so are we.  Sorry for swearing Bunny.

The tests on the liver and the lungs are still pending until we have sorted this most tiresome and persistent headache!  We will then work out what needs nuking with radiation and what sort of treatment is best.  These are all very much next steps though as we have to concentrate on the task in hand and at the moments it is about getting Junior!

Our families have been remarkable, beacons in the storm and we are both incredibly grateful to you. Our friends, well I cannot thank you enough.  It is a truly rubbish time but you are all making this easier to deal with so we are ever thankful.  Thank you also to St James Place because you are simply fantastic and thank you also to my work for being so compassionate and understanding.

I will update you all as soon as I can.

All our love and thanks.

x

In true Winston fashion

Dear All

The operation went as well as we could have ever hoped or wished for! Terry the tumour is out #UpYoursTerry!

Sammy continues to KBO (Keep Bugg@ring On ) in true Winston fashion!   She was compos mentis enough an hour post the op to tell me she had already asked for extra morphine and that she was hungry.  She was back and true to form!

The night in Intensive Care wasn’t easy.  I think a mixture of the noises, lights along with trying to understand what on earth has just happened to her in this whirlwind of rubbish was quite a lot.  Let alone coming down from a plethora of drugs that the Stones would have been proud of made it rather an unpleasant night. As always though she put a brave face on and soldiered on.  She is simply amazing!

I spoke with the surgeon (whom I have an alarming man crush on) yesterday morning and he was as positive as these meticulous, medicinal, geniuses can be. Very matter of fact and the polar opposite of my reaction… I told him I wanted to hug him and swiftly burst into tears, there goes any iota of credibility I had. 

I am in true awe of the NHS, what we read in the papers and the stories we hear are the antithesis of what we have experienced.  We have been seen with such speed, looked after by the most kind, caring and genuine professionals that we are all bowled over not to mention immeasurably thankful!  Intensive Care is not somewhere anyone wants to be or see but it is such an astonishing and well-oiled machine of tech and top class people.  Sammy had a nurse at the end of her bed watching and monitoring her every second she was there.  Then there is the team of doctors, surgeons, nurses of every order and physio’s who all work together with a common goal which is to get these people better. It is heart-warming how much they all care and it is incredibly comforting to know that she is such good hands. 

She came out of IC yesterday afternoon and is now in her own room.  We have managed to get her 1 of 2 private rooms and it is full of so many supporting messages, cards, flowers, scents and candles it is like a shrine and it is wonderful.  We and Sammy are so thankful to you all for your continued support. I really mean it

She had a good night last night and even managed to give herself a shower this morning.  Considering she needed two people to hold her yesterday this is quite a feat and a feat that got the nurse rather irate with her.  Her determination and attitude is applaudable.

She is now recuperating and now we need to work out the next steps.  There are some fairly big decisions to take and there is a meeting of medical minds to work out the next steps and what treatment she needs for Terry’s bed and Junior.  There is also some further investigations required as the CT scan identified some possible other nasties in the body.  However, these are yet to be proven so we just need to keep our fingers crossed that it is nothing but a small shadow or natural bump.

I will keep you posted but what is most important is that we have smashed the first hurdle and now need to do the same again and again and again.  I am in no doubt she will do it and all the support from you all helps beyond belief.  We really are so grateful to you!!!  Keeping her laughing and positive is key to this fight and fight we shall!

With much love

Sammy & Johnsie.

x

Sammy into theatre to remove Terry

Dear All,

Sammy has just done the haka, psyched herself up and gone into theatre for a 6 hour session.  This is to remove the larger tumour `Terry` (terry was the school bully at my pre-prep) at the back of the brain. The other one, ‎'junior' will be dealt with once we know what we are up against  post op.

All I can say is that she ‎is going in there fighting like a terrier! She is understandably petrified but masking it with that most amazing grit and determination and the trademark twinkly Sammy smile. I am in true awe, she is amazing, genuinely amazing because the last 5 days have genuinely done everything they can to destroy a mere mortal.  Poor girl hasn't had a chance to think about the loss of the baby and I still can't quite believe how dramatically things can change so much within such a small timescale. 

We are currently in St. George's, Tooting which is reportedly the best place for neurosurgery in the country and respected globally. We have a lead neurosurgeon on our side who is an absolute hero. James Laban. ‎Neither of us could have wished for someone more reassuring, calm, kind and clearly at the top of his game. I definitely wouldn't want to play scrabble (or operation) against him and it was reassuring he hadn't been on a bender last night when we met him this morning.

‎All your support to us both has been overwhelming and so meaningful I cannot tell you. It makes the difference, it truly does. Thank you! She and I really do appreciate the support team and love. 5uck the stiff upper lip, we need you all a lot, please don't be strangers I don't think that works. A lot of people have asked for our address which is 85 Smallwood Rd, London, Tooting, SW17 0TN

We are all going to have pull with her, please keep her laughing and send her so much positivity as she has a long battle ahead of her unfortunately. ‎ One, nameless, person texted me saying "my prayers aren't with you because I don't pray but all my positivity is."  

She is being so, so strong it is truly humbling.  Laughing, being the beautiful Sammy we all know and love. ‎She is seeing the positive in everything and I don think there is anything in our control which we could do better, the team operating, the team behind her and her attitude to the dreaded c bomb.  She has taken the gloves off and "it is on like donkey kong"! 

We will take each day as it comes but I just wanted to thank you and let you know where we are.

With much love 

Team Johnsie