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A visit from the consultant

By Gillian
This evening the consultant oncologist came to the hospice to discuss treatment options with us. Chris was alert, sitting in a chair, and able to follow and contribute to the conversation, which was great. The nurse and palliative care consultant were both amazed at how much more with it he was compared to this morning. Mind you, the effort exhausted him and he went to sleep as soon as the doctors had gone.

We discussed three options.
1. Brain surgery to remove the tumour. Technically possible but inadvisable as the primary tumour is very aggressive and Chris would most likely still be recovering from major surgery when the next crisis hit with a new secondary.
2. Radiotherapy to the brain. Clinically the evidence is that this is beneficial only in cases where the patient is responding so well to steroids that they have hardly any symptoms. Not the case here.
3. Palliative care to treat the symptoms, together with large doses of steroids to shrink the inflammation around the tumour.

We all agreed on option 3, and Chris was quite adamant that he did not want any more aggressive treatment. So steroids and palliative care it is.

The consultant was quite clear that this brain tumour is a “devastating set-back”. The median survival time with this type of brain tumour is twelve weeks, and his gut feeling is that we have significantly less than that. Both Chris and I are worried that this will drag on and on. I shall need to discuss care options with the hospice tomorrow, as I don’t know whether they can treat someone for weeks at a time, and I certainly can’t cope with him at home…..

{ 26 } Comments

  1. Sam | 4 August 2010 at 8:00 pm | Permalink

    Such a brave decision for Chris to make. Gillian as I have said before, you are more than welcome to stay with us to make visiting easies. I really don’t know what else to say, but know you are both in my thoughts. Sam x

  2. Kara Shallenberg | 4 August 2010 at 8:27 pm | Permalink

    You are in my heart and thoughts. Lots of love for both of you all the way from California.

  3. Seonaid Teal | 4 August 2010 at 8:29 pm | Permalink

    Just to let you know I’m thinking about you both and you know where I am if you need anything.

  4. Elli | 4 August 2010 at 8:36 pm | Permalink

    I am so sorry to hear this. Thinking of you both and sending all my love!
    Elli

  5. Cori | 4 August 2010 at 8:40 pm | Permalink

    Reading here, Gillian, and thankyou for writing. Sending my love also.

  6. Stephanie | 4 August 2010 at 8:43 pm | Permalink

    I’m just thinking of memories you have shared with me, dear Christopher. How you explained the Heisenberg(sp) principle. Sally in that brilliant red dress on the quiz show. And maybe you don’t remember, but a lovely photo of Christopher running with our wolfhound, Clew, somewhere near the pond in Salem. Thanks for the fun!

  7. Hugh | 4 August 2010 at 8:50 pm | Permalink

    Dear Gillian and Chris, Lots of love from Montreal.

  8. Laurie Anne | 4 August 2010 at 9:30 pm | Permalink

    So sorry to hear of the tumor progression, Chris and Gillian (Gillian, you don’t know me but I am one of Chris’ friends from Librivox). Strength and peace to you both… I will be thinking of you.

  9. Gillian | 4 August 2010 at 9:33 pm | Permalink

    Thank you all very much. I can’t reply to you all individually, but we are drawing great strength and comfort from reading your good wishes.

  10. Julia Jackson | 4 August 2010 at 9:42 pm | Permalink

    Dear Gillian – I know we’ve only met up twice (in Hereford, when Peter H was playing at the Cathedral), but we have lovely memories of our meals at the Hum Ming restaurant. We’re so sorry that things are not looking too brilliant now, and I wanted to let you know that a group of us who meet regularly for prayer & Bible study have been remembering you both on a regular basis, and are continuing to do so, especially now. As you know, he’s with us now, and we’re monitoring the blog daily. Both of the Peters have been where you are now (my Peter’s first wife died of cancer when she was 47, and I remember Sally well & was very fond of her), so they – and I – are aching with you.

  11. RuthieG | 4 August 2010 at 9:45 pm | Permalink

    Hello, Gillian. We are all thinking of you and Chris here at LibriVox. Give him our love.

  12. Ryan DeRamos | 4 August 2010 at 9:58 pm | Permalink

    Hello, Chris and Gillian! It’s very peculiar that all our interactions together are publicly archived permanently (or as long as various sites are still around). May you have as many happy present moments as possible.

    Ryan

    P.S. You did, and you’re still doing: http://twitter.com/DeRamos/status/7223302386 and http://twitter.com/icyjumbo/status/7228830677 – Cheers!

  13. Nigel | 4 August 2010 at 10:04 pm | Permalink

    Well, this latest shit seems unreasonable of the universe. Profoundly unreasonable.
    Chris. Thank you for everything. You made a dull, heartless place less dull and less heartless.
    Gillian. I know you don’t know me from Adam, but if there are practicalities needed, I’m close and would like to help.

  14. Alan Booth | 4 August 2010 at 10:41 pm | Permalink

    That is a real shock. Suddenly everythibg is moving too fast and too dangerously. For the moment,just my love to you both. I’ll be thinking of you.

    Alan

  15. Jayne Ackroyd | 4 August 2010 at 10:45 pm | Permalink

    Dear Gillian & Chris,
    Just to say that you are both in our thoughts so much & thanks for your bravery in writing this blog and sharing it all with us. Many people are reading this, and your approach and attitude is truly inspirational!
    If there is anything we can do to help with practicalities, please do let us know.
    Love Jayne & Rich x

  16. Catharine | 5 August 2010 at 1:21 am | Permalink

    Hugs to you both. I’m another Librivox buddy in California, and am praying for both of you.

    (For what it’s worth, I think this is exactly the sort of thing that hospices do. I’m glad for both your sakes he’s in a good hospice.)

  17. Sarah | 5 August 2010 at 2:10 am | Permalink

    Another Librivox buddy here. Many warm thoughts coming your way from Canada.

  18. Paul D | 5 August 2010 at 4:27 am | Permalink

    Sorry to here things have got worse, hope they can do something to make Chris comfortable

  19. Richard A | 5 August 2010 at 7:25 am | Permalink

    Dear Gillian and Chris, Thinking of you both.

  20. Q&J | 5 August 2010 at 7:33 am | Permalink

    C&G, Thanks for the information and we are still thinking of you both. Remember if there is anything we can do, just ask.
    Q&J

  21. disslexik | 5 August 2010 at 8:49 am | Permalink

    Dear Gillian,

    Glad to hear that the steroids can pick him up for some of the time. Faced with the same I would have chosen 3). Hope to see him soon if he’s up to it.

    Best,

    N

  22. Jayne Alexander | 5 August 2010 at 9:39 am | Permalink

    Gillian what can i say that hasn’t been said already. I am with N above, and would have made the same decision. Thank you so much for feeling strong enough to post these updates as there are so many people keeping a close eye on this blog that may not have the words to put their own post up but are glad of being able to keep up with the latest information. All my prayers are with you both xxx

  23. Mantina | 5 August 2010 at 10:24 am | Permalink

    Memories are all we have at a time like this
    Take heart you two
    Praying for you both

  24. Chris Hughes | 5 August 2010 at 10:37 am | Permalink

    Chris & Gillian
    So sorry for your upsetting news. I am a Librivox hanger-on, and I live very close to you: in West Malvern.
    If there is anything practical I can do, please let me know.

  25. Veronica | 5 August 2010 at 10:52 am | Permalink

    Chris & Gillian, We are both very sorry to hear the latest news. It’s a hard and brave decision you have both had to make. Our thoughts and prayers are with you, and hope that Chris can be kept comfortable in the hospice, so that you can make the most of the precious time you have together.

  26. Dave Palmer | 5 August 2010 at 12:39 pm | Permalink

    Gillian, so sorry to hear this latest news about Chris. The decisions you have both made throughout Chris’ illness have been extraordinarily brave and this latest one is possibly one of the hardest. I have lost my brother and sister to cancer so I know the mix of emotions that one has to cope with during this difficult period and our thoughts and prayers remain with both of you and your families at this time.