It is what it is – the next leg

A final blog for Clive, by Em –

Most of you will now know that on Wednesday 21st June 2017 Clive devastatingly passed away following a 13 day spell in ICU at St James Hospital, Leeds. His body was overwhelmed with infection as well as the Hodgkin’s Lymphoma that he had been bravely and stoically facing for 2 years. His spirit remained incredibly strong but his body couldn’t cope with anymore.

I have been trying to find the words to write this final blog post for Clive as I know that he would want it finished. Nice & neat, no loose ends. I considered writing just one or two sentences (like a short obituary) but really that isn’t Clive’s style and I can hear his voice saying ‘Em if you’re gonna write it, do it properly’ He never did see the point in doing a ‘half job’. No doubt he would also tease me about being lost for words, something along the lines of ‘well there’s a first time for everything’ 🙂

So here it is, the final post on clivevshodgkins.co.uk. Oh, and I should warn you, it’s a long one!

Clive left you all with his previous post back in May having just found out that the Gemcitabine Chemo wasn’t working and that the Lymphoma had progressed – considerably. So began the wait for a new ‘wonder’ drug Nivolumab which had literally just been approved and licensed for Hodgkin’s but was still awaiting some final formalities before the drug would actually be available in pharmacy. We were told this could be, days or possibly even weeks.

For those that don’t already know Nivolumab is not a chemotherapy, it is a Monoclonal Antibody therapy It has shown really promising results during clinical trials  for the treatment of Hodgkins Lymphoma. Clive had been following its progress in these trials for a long time and we both felt very hopeful that it would be a good drug for him. Maybe even a long awaited cure. I remember way back when Clive was first diagnosed he read about the Nivolumab trails and showed me an article saying “don’t worry sweetheart there are lots of clever new drugs in the pipeline, we have plenty of options if this chemo doesn’t work”

In the meantime Clive was sent home to wait, with a hefty prescription of Steroids to try to manage the worsening symptoms of the Lymphoma. These included the usual extreme fatigue, constant cyclic 40+ degree fevers, severe cough, breathlessness etc etc. These symptoms were worse than they had ever been.

The wait ended up being around 2-3 weeks in total. It felt like a lot longer! Initially the steroids helped to take the edge off of the symptoms but, by the end of the second week he was spending a lot of his time in bed, mostly sleeping but also thinking. He was pretty perturbed that the disease was being left to progress untreated. He wondered what was going on inside his body and he felt troubled that for the first time in two years there were no immediate treatment options for him. It was a waiting game. During this time he was just about able to muster enough strength for me to take him to the hospital every 2 – 3 days for checks and invariably Blood Transfusions as there was also the ongoing ‘mystery of the disappearing Platelets’ (see earlier blog post) and low red counts to contend with as well.

On Wednesday 7th June we saw his team at St James and they gave us the good news that the Nivolumab would be ready in two days. Clive was booked in to have the long awaited, ‘magic’ drug at 9am on Friday 9th June – phew! We were sent home with instructions to reduce his steroid dose steadily in the lead up to Friday. By this time his symptoms had become so severe it was doubtful as to whether they were actually doing anything anyway.

Thursday 8th June was the UK General election! Clive was determined to go and vote but after several aborted attempts to even get up out of bed we realised it wasn’t going to happen. I was so gutted as knew how important it was to him. Also in a soppy sentimental way it was one of those ‘things’ we always did together.

Mid afternoon I noticed that Clive very suddenly looked extremely jaundiced. Within the space of a couple of hours his skin and particularly the whites of his eyes had turned very yellow. Throughout his illness his Liver Function had always been stable and certainly never a particular worry. At the hospital the day before, his bloods had been checked and the Liver Function, although slightly out for Clive was not a major cause of concern. I told him my concerns (bearing in mind he wasn’t up and about and so hadn’t seen his reflection in the mirror for quite a while) and I said that I would telephone his Nurse Specialist when I got back from collecting the children. She phoned whilst I was out (typical!) and Clive spoke to her. I later found out that he had told her “Em thinks I might be a ‘bit’ jaundiced” Never was one to make a fuss that’s for sure! He really didn’t want to be admitted to hospital (for the millionth time!) and he didn’t want any delays in starting the new treatment and so he played it down, or, perhaps he just didn’t realise, or want to admit how unwell he was. I do remember that night briefly discussing with him a shared feeling that things were beginning to ‘spiral’ a little. Something along the lines of ‘thank goodness the treatment is finally ready!’ His nurse said they would review his condition in the morning and that he would most likely need to have his treatment as an inpatient.

Friday morning eventually came (long night!) and I realised that for the first time in over 2 years I was not going to be able to transport Clive to the hospital myself so an ambulance was sent for. The paramedics arrived and it became apparent that he was actually far more unwell than either of us had realised. At the time I vaguely remember Clive (or maybe it was me?!) likening it to the boiling a frog slowly parable!

Once at the hospital Clive was admitted to a ward and quickly transferred to Intensive Care with Acute Multi Organ Failure – liver, heart, kidneys and lungs. After numerous tests and scans they diagnosed a Bronchopneumonia infection as the primary cause. The infection had likely been underlying for a while but was being masked by the Lymphoma as the symptoms were the similar and, as a result it had got out of hand.

I won’t go into too much medical detail about the days that ensued. I will say that the staff at St James hospital, in particular his haematology team, and the doctors & nurses working on the ICU J54 were absolutley wonderful, as always. They did everything they could to try and help Clive, and to support me, and to help me to support him. All this whilst gently and kindly trying to prepare me for the fact that, despite my hopes & faith in Clive’s strength, the worst may happen.

When Clive was transferred to the ICU they were doubtful that he would survive the weekend but he fought on for 13 days. Brave, as always and with a continued inner strength that amazed the doctors and nurses caring for him. Medically things were looking pretty bleak and he was really up against it. He knew this but he would not give in and it annoyed him when the Doctors tried to discuss end of life wishes with him. He didn’t get what all the fuss was about and even went so far as to tell them they were being POD’s (Predictors Of Doom) He told them that he was fighting it and just needed a bit of time. He was not giving in and was so determined.

I recall explaining to the ICU Doctors’s (who didn’t know us well) that Clive wasn’t ‘typical’. He had never followed the predicted patterns of Hodgkin Lymphoma and, on many occasions since the 2015 diagnosis he’d had his doctors scratching their heads in puzzlement. Because of this and the incredible strength he was showing, I along with those who knew him never stopped hoping or believing that he might (once again!) defy the odds, and suddenly begin to turn a corner. If anyone could it was Clive.

On Tuesday the 13th June Clive did end up having the long awaited Nivolumab treatment. As far as I am aware he was the first person in the U.K. to have it under licence for Hodgkin Lymphoma and certainly the only person to ever have it in those extreme circumstances, so unwell and in an ICU setting. Clive felt that the Lymphoma was driving the other infection and that he couldn’t possibly begin to fight it until it was dampened. Together we asked if he could go ahead and have the Nivolumab and after discussions with us and an MDT meeting his Consultants agreed. We all knew it was risky but felt there was nothing to lose. By this time it it had become clear that the options were running out. He was having all the medicines and life support possible but after 5 days he was showing no signs of improvement.

We’ll never know what impact the  Nivolumab had on Clive’s condition. There was no marked decline in the days that followed after he’d had it and I have to believe it didn’t made things any worse and was the right thing to do. Psychologically Clive really needed to have it. I’m glad he did. No regrets.

Throughout his illness we kept ourselves informed. We knew his difficult disease meant that the long term prognosis was poor. Of course we had dark moments and worried but we always tried our best to keep positive and be mindful of fact that our thoughts are very powerful. Clive didn’t ever think ‘why me’ and he wouldn’t allow defeat to enter his very strong mind. He was aware of the risks but he knew in order to cope and to live out our many dreams in the future that he had to concentrate his energies on the present. We also maintained the hope that if he could hang on in there long enough there would be advances in treatments which might help him to beat the cancer once and for all.

It wasn’t to be. On the morning of the 21st June, Clive passed away peacefully. It was the summer solstice, always one of his favourite days and 21 was, and still is most certainly a special number for us.

I take comfort in the very many signs that he is still here with us. The children are constantly reminding me of this. They are coping so well, Clive would be incredibly proud. Our memories of him and of the times together are vivid and joyful. I know that he is in our hearts and our heads and whilst this gives me some comfort and guidance it’s not the same as being able to talk to him, to hold his hand, to see his amazing smile, and to watch him love, teach & nurture his children. I long to feel his presence. We want to hear his voice and his laughter and to hear him nag that the dishwasher is loaded wrong, or shout at the cat for scratching the sofa! I want to appreciate life & live for each day with him, grow with him, laugh with him, share music with him, sing to him, share my deepest thoughts with him. I wish I could seek his opinion on things. I miss the simple things – cooking together, sharing a bottle of wine, pottering in the garden or going for a walk together. I want him to hug me, to make me feel special and to exchange those ‘no words are needed’ glances with him. I could go on and on but I think you get it. It seems impossible that it will soon be 3 months since our last moments together. I can close my eyes and sense them as if they are happening right now.

Clive was a very special person, truly one in a million. He was a fantastic father to Ben, Sophie, Caitlin and Ava and a wonderful son to Shirley. A true and incredibly loyal friend to many. The love of my life, my soulmate and my best pal. Even in the worst of times and particularly during the past 2 years we regularly acknowledged how lucky and how very grateful we were to have each other and the children. We tried our best to live in the now and appreciate the simple things and each other.

Clive was a man with many mantras. I actually didn’t really consider this much until now but they are all there logged in my brain ready to pop up at a time when they are needed. I think the two he used most used during the last 2 years of his life were:

‘Failure is not an option’ and ‘It is what it is’

The latter is one that we, that is myself, the children, family and friends continue to use everyday. It’s relevant to many situations and is oddly reassuring. Next time you are faced with something that you can’t obviously or immediately change you should try saying or thinking it and then just go with the flow and trust!

Clive wasn’t afraid of dying. His reasons for fighting to live were his children, and me and also because he felt that life is a wonderful gift that shouldn’t be taken for granted. He wasn’t religious but he was a spiritual person and he absolutely believed that this life is part of a much bigger journey. The tip of the iceberg!

So now he continues on the next leg of that journey and we – everyone that loved him, are left to continue on this leg, in this life, without him. Yet, in so many ways I know he is still with us just not in the way that we would like.

Em x

Clive Starr Newitt
21 August 1970 – 21st June 2017

Three Little Birds