Jeremy…husband of Catherine, father of Ben, Simeon, Tom, Joshua & Lydia. Up until the end of April 2015, he was pastor/vicar of a group of churches on the edge of Exeter in Devon, UK. In early October 2014, aged 48, he was diagnosed with advanced cancer, a stage four malignant melanoma presenting as a tumour on his lungs. The usual life expectancy is 8-12 months. Then, in late December 2014, 23 year old Ben suffered a seizure. After prolonged medical care for what was most likely to have been a viral infection affecting his brain, Ben died in April 2015. Jeremy has up until recently seemed to have responded well to pioneering immunotherapy treatments that can extend life, but from September 2016 is now facing the fresh development of brain tumours and potentially now just months to live. On January 27th 2017 Jeremy took his last breath and went to be his Lord and Saviour. The family share their thoughts, feelings and reflections as they taJeremy…husband of Catherine, father of Ben, Simeon, Tom, Joshua & Lydia. Up until the end of April 2015, he was pastor/vicar of a group of churches on the edge of Exeter in Devon, UK. In early October 2014, aged 48, he was diagnosed with advanced cancer, a stage four malignant melanoma presenting as a tumour on his lungs. The usual life expectancy is 8-12 months. Then, in late December 2014, 23 year old Ben suffered a seizure. After prolonged medical care for what was most likely to have been a viral infection affecting his brain, Ben died in April 2015. Jeremy has up until recently seemed to have responded well to pioneering immunotherapy treatments that can extend life, but from September 2016 is now facing the fresh development of brain tumours and potentially now just months to live. On January 27th 2017 Jeremy took his last breath and went to be with his Lord and Saviour. The family share their thoughts, feelings and reflections as they take this painful and unexpected journey.

Normality and the everyday

Unexpected RoadI remember years ago when our five children were much younger, people would regularly say to both me and Catherine, “I don’t know how you cope with five!”. But for us, it had just become our ‘normal’. We re-define our normality according to that with which we become accustomed.  And I suppose that’s something of where we are today, living through what are chewy, tough circumstances, but something that has become our normality.  It doesn’t mean to say that we have become desensitised and stoical in the face of hard realities and future prospects, or that we treat people’s kindness and sympathy with any disregard – far from it, we cherish it – but it means that it doesn’t feel like a black hole that’s constantly pulling us in. There’s a rhythm and everydayness in life we’ve adopted, undergirded by the Father’s everlasting arms that means I can presently sit in front of the fire as I write, a typical homely winter’s day scene, Catherine can be upstairs sorting some clothes, Lydia in her room on Facebook, Josh out at a friend’s house for the night having a jam session with his guitar, Tom at university reading for an essay, Ben and Dabi sitting side by side at the Mardon Rehab Centre and Simeon…well, I’m not sure where he is at the moment. Part of that rhythm also allows quiet tears to come and go for us from time to time, both folded into and a part of the everydayness as past, present and future all meet.  I sat next to one of our five during the week as tears flowed, set off by some passing old memory which had highlighted the fact that future memories including me might not be there to be made.  Again, it’s a part of our normality – the painful part – learning to lament. I’m conscious that it’s something scripture shows, especially the Psalms, pouring out our hearts to each other and God, openly and honestly yet trusting that His way and purpose is somehow always and ultimately good.    

So it was with a sense of the everyday that Catherine and I saw my oncologist last Thursday, having had a CT scan a week Stethoscopeearlier.  Ayman Nasser, my main oncology doctor and one with whom I’ve developed an easy rapport, took us through what they’d found. And that was? Precisely, nothing new – my tumour remains unchanged. In one way, viewed negatively, the ipilimumab has had no effect on the tumour itself – neither an expected inflammation and nor any shrinkage. But positively, it has not grown nor has the tumour proliferated into further tumours in my lung. Ayman personally had not seen this before and was not sure exactly what it meant, but when I asked him if it was an ‘OK’ result, he nodded and said, ‘Yes’. After some further talk around a variety of subjects, we left for home. But we left not only feeling completely easy about what we’d just heard, but actually quite content as it has helped clarify our thinking as we seek guidance for our future.

For Ben, we continue to nurse concerns. As one friend said yesterday, he is still ‘a very ill young man’. Whilst this journey of recovery is inevitably going to involve the occasional  ‘one step forward and two back’, we feel we’re seeing it happening more often than not. He came out and joined us at church near the Mardon Centre yesterday morning, having also been at home for most of the previous day. But he’s aware that walking for any distance is both risky and difficult because of dizziness, shakiness and the real risk of a seizure, but even simple tasks using his hands are slow, even unsafe, because of the trembling sensation he experiences in all his limbs. We’re meeting with the neurologist on Wednesday for a ‘round table’ discussion involving some of his therapists. Hopefully it’ll provide useful information which will help our perhaps over-eager expectations.  We were glad Dabi was able to spend part of last week with some Brazilian friends in the Midlands and we continue to pull information together to support an approach to the Home Office to either extend or alter her visitor’s visa.

I was encouraged to read these words from Isaiah last week, words which seem apt both for Ben and for us all, containing so much promise and hope…On Eagles wings

Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength.They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint (Isaiah 40:28-31)

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Comments on: "Normality and the everyday" (10)

  1. Tracey Wallis said:

    God bless you all. Constantly in our prayers xxxx

    Liked by 1 person

  2. i’m so very glad that your conditon hasn’t worsened jeremy,. I pray for more ease ,grace, and profound healing for you all.
    With warm good wishes
    gail

    Liked by 1 person

  3. TIMOTHY ROBB said:

    Thanks for the update. As ever we and my church are holding you all in our prayers.

    With every blessing

    Tim

    Revd Timothy Robb Vicar, St Mary’s Eaton Socon Tel: 01480 212219 Mob: 07786 460024

    >

    Liked by 1 person

  4. Brenda Lockett said:

    My consultant when I was fighting leukaemia and a procedure was tried was often baffled by the outcome. He often said I didn’t go by the book! Everyone responds differently it may be that you are a trail blazer Jeremy! I sure hope so . Poor Ben I often think of him in his struggle to recover. God Bless you all in your new normality. Always in my prayers xx

    Liked by 1 person

  5. The Everlasting God bears you in His Everlasting arms. We keep praying.

    Liked by 1 person

  6. Thank you in the name of Jesus for your comments about occasional tears becoming part of your new normality. This is an encouragement to me in the face of a prospect that I find hard to come to terms with, thoughts of which catch me off guard from time-to-time. My prayers are with you for His grace to continue to uphold and sustain you and your family in a situation that puts my own “normality” in perspective but nevertheless needs His grace to live with.

    Liked by 1 person

  7. Thank you for your update – we are still praying for you – you are also being remembered in church. Our love and prayers to you all.

    Liked by 1 person

  8. Chris Saunders said:

    May God bless and hold you all in His love. Thank you for the amazing insight into your journey.

    Liked by 1 person

  9. Jo McNamara said:

    What a friend we have in Jesus all our trials and griefs to bear are we weak and heavy laden take it to the Lord in prayer. You are all precious and in our thoughts.
    Love Jo, Mike, George and Sarah

    Liked by 1 person

  10. Carol and Neville Todd said:

    Hi Jeremy and Catherine, Thank you for your updates and thoughts during your journey and the one you are travelling with Ben. Our prayers and best wishes go with you all.
    Love Carol and Neville

    Liked by 1 person

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