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End of life management

Things went from bad to worse overnight. Chris was very agitated and kept trying to climb out of bed – despite the guard rails being up. That’s how he keeps falling of course. He was very confused and unaware of his surroundings. A nurse and I were with him the whole night, and I got just a few hours dozing on the camp-bed.

This morning I had a long discussion with the doctor. She is shocked by the sudden and massive deterioration compared to this time last week. We have agreed that the kindest and safest thing to do is to move to an end of life management plan. In essence that involves keeping him heavily sedated with phenobarbitone, plus pain relief and various other drugs to keep him comfortable and reduce the risk of seizures.

So Chris will be in no more pain or distress. He will be sedated now for as long as it takes. The doctor thinks a few days to maybe a week (as he is young and strong so may not slip away quickly)

Keep thinking of us both please. I can’t respond to all your comments but I read them all and it is a lifeline for me at the moment.

{ 40 } Comments

  1. Elly Smith | 6 August 2010 at 11:52 am | Permalink

    Dear Gillian, I really really feel for you both right now. I am so sorry that this has happened so quickly. I send you much love even though we have never met. Give our love to Chris. With much love from Elly and family x Please do not think of replying, just try and preserve your strength in the knowledge that so many people are thinking of you. x

  2. Rebecca | 6 August 2010 at 11:56 am | Permalink

    I wish you both peace.

  3. Sam Carrington | 6 August 2010 at 12:01 pm | Permalink

    Oh my god, i am so so sorry. I really wish there was something I could do to help. Sam x

  4. Richard P | 6 August 2010 at 12:03 pm | Permalink

    Dear Gillian,
    It’s devastating to hear how quickly Chris is slipping away from us. We must cling to the positives that Chis is not in distress or pain, and that he is loved and admired by so many people.
    Please keep strong, and try to get some rest when you can.
    Love to you both,

  5. russiandoll | 6 August 2010 at 12:26 pm | Permalink

    Oh, my goodness, how horribly fast this has happened! You are both in my thoughts, of course.

  6. Stephanie | 6 August 2010 at 12:29 pm | Permalink

    Brave Gillian. I remember how it feels. I think of you first thing in the morning and last at night.
    Thank you for being there. And thank you for allowing us to share some of these last moments. With love, Stephanie

  7. Angela Noble | 6 August 2010 at 12:41 pm | Permalink


    Tears are welling up. You are sounding so strong. I hope you can feel the love and support we all are feeling for you.


  8. Geoff de V. | 6 August 2010 at 12:47 pm | Permalink

    I am very sorry to read of all this on the blog. I hope that Chris will have a peaceful end to his life and that you will find strength to cope with all of this turmoil.


  9. Katie | 6 August 2010 at 12:51 pm | Permalink

    We are with you in spirit. Ring if you want to talk. Can be there anytime you need us
    Tons of love
    Katie and tom xxxxx

  10. David Allsopp | 6 August 2010 at 12:58 pm | Permalink


    Thank you for sharing even these most difficult moments. I’m sorry beyond words that Chris is slipping away so soon, but glad that he isn’t suffering. Please try to get some rest now so that you can keep going, and call on your many friends if you need help or company.

    Thinking of you both constantly.

  11. Mantina | 6 August 2010 at 1:15 pm | Permalink

    Bless you both
    Thank you for sharing his life even at this difficult time
    There are no words and no one can not imagine what you must be going through
    I am here to help – I am in Worcester so anything i can do please don’t hesitate to ask

  12. Q&J | 6 August 2010 at 1:29 pm | Permalink

    I am so sorry to read the latest – I can’t add any more than that you are both in our thoughts and prayers. We are here if needed.

  13. Anne Chalk | 6 August 2010 at 1:35 pm | Permalink

    I’ve been following your blog, hoping for a different outcome. So very unfair on you both, & such a positive attitude from from you both. Thinking of you.

  14. Lindsay | 6 August 2010 at 1:46 pm | Permalink


    I have been reading your blog for many months now, but haven’t commented before – partially because I didn’t want to intrude on what is clearly a very personal diary, but also because words failed me. I simply did not know what to say.

    I am so very very sorry to hear about Chris. Having nursed my Mum through her last year of cancer (many years ago now), I know what you are going through with all the emotions, the helplessness, the sheer exhaustion of it all. Cancer is a terrible disease. In many ways it is worse for the family than for the patient.

    I have a brain tumour, which although it is slow growing, it is nevertheless untreatable in the long term. Yours and Chris’s experiences have been a source of great inspiration and strength for me over the last year. You are both so incredibly brave.

    Hang in there. My thoughts are with you and Chris, and I thank you both with all my heart for having the guts to share what you have been going through. You have no idea how much you have helped me.

    Much love,


  15. Tim Hope | 6 August 2010 at 2:34 pm | Permalink

    So sad to hear the bad news. Best wishes in such a difficult time.

  16. David Bilsby | 6 August 2010 at 2:49 pm | Permalink

    I am really shocked to here how things seem to have suddenly deteriorated with Chris. I just can’t express my feelings of sadness at this time for Chris and yourself. My thoughts are with you both.

    I will always cherish the memory of Chris as a really nice guy, friendly, cheerful and always happy to help.

  17. Graham H | 6 August 2010 at 3:08 pm | Permalink

    Dear Gillian, I’m so sorry. Thank you for keeping us all informed. You and Chris are in my thoughts.

  18. David Barrett | 6 August 2010 at 3:32 pm | Permalink


    Although I have not made any contact recently, I have been following the blog.

    Having gone through this type of situation twice before with my own family, I was rather shocked to hear that Chris apears to have gone down hill so rapidly.

    If you need any help then please make contact – travel, food shopping
    or otherwise.

    Your sister is correct. Don’t drive – use someone else. I suspect the trafic will now be reduced as the Big Chill starts. I can be there in about 10 minutes. I will provide transport for any journey required.

    Our thoughts are with you both.


  19. Sam Carrington | 6 August 2010 at 3:41 pm | Permalink

    You have a special meal arriving at the Hospice at about 7pm tonight. Trust me. Sam x

  20. RuthieG | 6 August 2010 at 3:46 pm | Permalink

    Gillian. I am so sorry. We are all thinking of you both.

  21. Paul Bowering | 6 August 2010 at 3:49 pm | Permalink

    Thinking of you both and sending best wishes.


  22. Catharine | 6 August 2010 at 4:51 pm | Permalink

    Dear Gillian,

    I’m so sorry that things have gone so quickly. You are both in my thoughts and prayers. Peace and strength be with you both.

  23. Jeremy Baxter | 6 August 2010 at 5:02 pm | Permalink

    I’m shocked that Chris has gone downhill so fast, our thoughts and prayers are with you.


  24. Elli | 6 August 2010 at 5:02 pm | Permalink

    Omg, I’m so sorry! All my love to both of you!

    Elli (from LibriVox)

  25. Kara Shallenberg | 6 August 2010 at 5:06 pm | Permalink

    So very sorry, Gillian. This is devastating. I’ll be thinking of you both.
    Kara (also from librivox)

  26. Juliet and Mike | 6 August 2010 at 5:33 pm | Permalink

    Dear Chris and Gillian, We are so sorry to read the last few posts on here and we are both thinking of you lots at the moment. If there is anything we can do please let us know and you’re both in our thoughts and prayers.
    Love and best wishes
    J and Mike
    The Plough and Harrow

  27. Carol L | 6 August 2010 at 6:26 pm | Permalink

    Think of this as one of my special hugs in virtual form. Chris used to like them. The supply is unlimited.

  28. Veronica | 6 August 2010 at 6:34 pm | Permalink

    Gillian, David and I are so sorry. The courage that you have both shown in the decisions you have had to make, and your generosity in sharing your journey with us all is so typical of the pair of you.
    I remember Chris standing on the archery field with me when I had totally lost my confidence, and convincing me that I could do it. Just one more example amongst the many I have read of his kindness and patience.
    Keep strong, and get some rest if you can. You are both in our thoughts and prayers.

  29. Cori | 6 August 2010 at 6:44 pm | Permalink

    Thinking of you both, Gillian and Chris, I’m so sorry to read this.

  30. Barry | 6 August 2010 at 6:47 pm | Permalink

    Dear Gillian,
    I lost my wife a few years back to cancer; I have not followed the blog as the memories are still painful. My thoughts and prayers are with you. I know you are exhausted and upset and feeling helpless. You have done the right thing by sedating Chris. Feel free to write me if you need someone to listen.
    Barry (Librivox)

  31. frosty | 6 August 2010 at 6:53 pm | Permalink

    I can’t find the right words to tell you how upset we were to read this post. We’re thinking of you both and sending all our love
    Your strength in facing things so positively & bravely is an inspiration.

  32. David Baker | 6 August 2010 at 6:59 pm | Permalink


    We are all thinking of you and Chris and send our best wishes.

  33. Seonaid Teal | 6 August 2010 at 7:33 pm | Permalink

    It was a shock to read the blog and see how quickly it has come to this. I’m really sorry. You are both in my thoughts.

  34. Lucy_k_p | 6 August 2010 at 7:48 pm | Permalink

    Gillian, I am so very sorry that you are having to go through all of this. I’m glad Chris is now free from pain. I think you are being tremendously strong in dealing with all of this. Chris is lucky to have your support. You are both in my thoughts.

    Lucy (LibriVox)

  35. Betty M | 6 August 2010 at 8:09 pm | Permalink

    I’m so sorry to hear this news of Chris. Take care of yourself while you watch over Chris. I’ll keep you both in my prayers

    Betty (also from Librivox)

  36. Ryan DeRamos | 6 August 2010 at 8:40 pm | Permalink

    Gillian, you have been very strong. Thank you for continuing this blog.
    Chris, I don’t know how anyone perceives their last moment here. Maybe it’ll be a dream where time feels like a hyperbola reaching an asymptote. Maybe it is the same life, relived as if new. Whatever it is, may it be good.
    My mumbo-(icy)jumbo aside: Thank you, Chris. You wrote, “In a very real sense, your reading my blog is helping me.” In a very real sense, reading your blog has helped me, and others, too.
    I am thinking of you both.
    Ryan (LibriVox)

  37. Jayne Alexander | 6 August 2010 at 9:01 pm | Permalink

    Gillian, bless you for keepng strong in this diffucult and extremely sad time. I still can’t believe its happening. My mum sends her love although she never knew Chris. I have spoken to her a lot about him over the past months as mum has had cancer twice and always asks me about how Chris is getting on. She is very sad to hear the news today. Lots of love and prayers Jayne xxx

  38. CattusMagnus | 7 August 2010 at 4:11 am | Permalink

    I’m so sorry the hear the news. The two of you have been in my thoughts and prayers very much lately, and you will continue to be.

  39. Andrew | 7 August 2010 at 8:03 am | Permalink

    I have not commented before, but I have followed this blog daily. You and Chris are constantly in my thoughts. Love to you both.

  40. Paul D | 7 August 2010 at 3:32 pm | Permalink


    I was shocked to here how things appear to have deteriorated so quickly. I hope Chris gets a peaceful end and dosent suffer any more.