Recipes from my Suffolk Kitchen

Friday, 24 March 2017

Suddenly Reality Hits

 We've been going along here as if nothing unusual is about to happen, the steroids have given him more energy than he has had for a while and lots of jobs have been done but we haven't had time to sort out so many things.... car repairs, garage roof repair, I've not even learned how to use the ride-on mower yet. The sale of the bungalow is almost complete but not quite, Colin's County Council work pension is being processed but hasn't come through yet. So many things  in the pipeline.

 Then we got the phone call to say Colin has been approved to have the new cancer tablets...... next week. These are some that have only become available this year and haven't even finished their trials. They've been cleared for use with CLL lymphoma in the States with good results but not tested fully on Mantle Cell lymphoma, which is what Colin has but the drug company are permitting them to be used under compassionate licence.

Suddenly we realise this is real, make or break. These tablets proved fatal to some people when they were first trialed as they were given in a high dose straight away. Now they introduce them slowly with lots of fluids to take away the toxins, so patients are monitored closely for several days, just in case.
He's signed the consent forms, one of the list of possible effects which we have to understand is Death.
If they work he then has to go through the donor stem cell treatment later with all the risks of rejection.

 
As they say.......... OMG

Back when I've got my head round the implications
Sue

64 comments:

  1. Well...good luck Col...I won't say anything else because I really don't know what to...so good luck. x

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  2. Wow, this is big and scary stuff - sending lots of positive thoughts x

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  3. All you can do is keep on keeping on and go through one day at a time. Wishing Col all the best and hope you are both given the strength you need.

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  4. Big news. Big step. Sending you and Col a hug. Hoping things work out well.

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  5. We will be thinking of you both Sue, wishing you both the strength to see you over the coming days. All fingers and toes crossed .xxx

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  6. Sending all good wishes to both of you. You have many people you have never met rooting for you both. X

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  7. Sending love and the very best of wishes to you both. All fingers and toes crossed for Col to come through it all and be with you still. Meg Xxx

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  8. OMG indeed! Really scary, for both of you.

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  9. Our healing thoughts are being sent to you. Stay strong, not easy, but I am sure all will be well.

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  10. All is not lost, I have a friend who has had the stem cell treatment and is doing really well. Hope all goes well for you both.
    Briony
    x

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  11. Onward and Upward. Thoughts with you both and everything crossed. The other stuff to sort will still be there and .... xxx

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  12. Sending positive thoughts and prayers to you both.

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  13. Hoping and praying that this will be the answer and that all goes smoothly.

    Hugs
    Jane

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  14. Our hopes and prayers are with you both. Keep positive and may you know God's comfort and peace.

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  15. OMG indeed - it feels a bit like gambling with your most precious commodity. I applaud your courage. Take care both of you.

    Phil (Australia)

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  16. 5 of us thinking of you from up North. Xxxxx

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  17. You have appeared to stay so calm for so long that it's not surprising that you are now saying OMG.
    I'm sure there are people around who will help you with the things like the ride on mower.
    Take care both of you and God bless you in the weeks to come.
    It's good that Col has been accepted for the new treatment.
    Sue

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  18. Thinking of you both and wishing with all my heart that everything works out.
    Hugs-x-

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  19. Positive thoughts and prayers from here as well Sue and Colin.
    Karen from Australia

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  20. My thoughts are with you both, you have been so strong for so long. xx

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  21. Sending my love. If this is the only option then be positive,grab it with both hands. Be strong x

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  22. Sending good thoughts and prayers your way.

    God bless you and Col.

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  23. Sending every good thought your way.

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  24. Many prayers and positive thoughts for both of you.

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  25. On the one hand, it's good news Col was accepted into the trial. So here's crossing fingers & toes + many prayers the new tablets work. But, yes, OMG seems appropriate.

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  26. Sending you all good wishes.x

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  27. Oh goodness. Good luck with whatever you decide.

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  28. Scarey stuff indeed. Have faith, and know that all your blogging friends are thinking of you both at such a worrying time.

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  29. Scary, but good luck with everything.

    Julie xxxxxx

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  30. Only you and Col will know the right course of action, but my very best wishes whatever you choose to do. I've had cancer and know how scary it is, and I, too, had a very new (new at the time, I mean) drug. Good luck to you both and my very best wishes.
    Margaret P

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  31. Keep strong the both of you. I am sure all your blog readers will be with you in wishing that these new tablets will be successful. X

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  32. Thinking of you, and all the family. Good luck to Colin next week xxx

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  33. Look forward and hope, keeping everything crossed here.

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  34. OMG indeed. Good luck to you and Colin for next week.

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  35. The very best of wishes to you both - hope it goes well x

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  36. Best wishes to you both, hope everything goes well.

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  37. What is his 'gut feeling,' about this new procedure???

    What are your 'gut feelings,' about it????

    Then, best of good wishes, to you both.

    Gentle hugs,
    Luna Crone

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  38. Hugs, best wishes and prayers from across the pond.
    Debbie in the U.P.

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  39. Thoughts and prayers to you both. Understand so well what you are going through. XXXXX

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  40. Sending all the good wishes I can to you both.
    Lisa x

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  41. Sending positive thoughts xxx

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  42. Wishing Col the best of luck with the new tablets. The courage of patients and their families who are already dealing with so much but are willing to try new treatments is to be greatly admired. Hope all goes well. xx

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  43. Sue, you have been putting on a brave face for a long time, which is the only sensible way to cope with a health problem. But this chance of being accepted to trial a new drug has come suddenly and you've not had time to get your thoughts around it with its many possible side-effects. Is this really the only treatment navailable to Colin now that the previous i=ones have failed?
    I pray that all goes well and that the positive results in the US plus the amended treatment dosage will have a wonderful effect on Colin, so that you have a future of many healthy years together.
    - Rosemary xxxxx

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  44. Good luck to you both at this at this difficult time. I hope col's treatment is successful & not too traumatic for either of you.
    I've only just discovered your new blog, Sue. Since I moved my blog to Wordpress, it's harder to keep up with the blogs I follow. I'm going back now to read the posts I've missed.

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  45. OMG indeed. Sending much love and positive thoughts to you and Col and hoping for the very best outcome.

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  46. I continue to pray for you both.
    Remember, they're required to tell you the worst-case scenario.

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  47. Sending you both my best wishes - the trial gives you hope, and I pray that it is the key that you need to get through this nasty disease. Take care xx

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  48. Sending you and Colin good luck wishes and every hope for the very best outcome. Good luck. xx

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  49. This is the first time I have commented on your blog and I am referring to the WI. I have belonged to our local one for well over 30 years. We only have 16 members and meet in the evening. I have gained so much from the friendship there especially this last few months after open heart surgery members have come and picked me up for various activities and taken me to the doctors etc.whereas neighbours I have had for over 40 years have done nothing.
    The reason we pay a reasonable subscription is we get a monthly magazine thru the post also we have a wonderful residential college in Oxford where you can do any subject under the sun. They will also pick you up from Oxford in the shuttle bus, prices might be high but you get morning, afternoon and evening tuition plus meals, your have your own en suite bathroom plus husbands can go as well, and ideal place if you want a short break on your own and from entering the door you are made welcome.
    I have been lucky to take part in the Queens river pageant, garden party at Buckingham palace also meetings at the Albert Hall and Cardiff and the icing on the cake last year was to be in the backing group with Gary Barlow at the Royal Variety Performance.
    I say give it a try for a year and hopefully your life will change.

    Good luck.
    Hazel c uk

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  50. PS I am sorry I forgot to add hope the new treatment helps your husband.
    Hazel c uk

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  51. Come on Sue, only positive thoughts allowed!
    Sending my very best wishes that the tablets work miracles for Col.

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  52. Wishing you both all the luck in the world. I have had drugs from a clinical trial and one that was granted for compassionate reasons. The second worked. I wish the same success for Col. Keep as positive as you can. Carole.

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  53. Wishing you all good luck as Colin starts the clinical trial of tablets. It must be a scary time. I'm sure that many people from all around the world are keeping their fingers crossed and hoping for a positive outcome for you and Colin.

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  54. As you say 'suddenly reality hits'. It's like someone has slapped you hard across the face and said 'NOW do you realise what you are going though'. And the amazing thing is you have both been SO brave for the last year.

    Keep strong and know that you have family, friends and hundreds of us here in Blogland rooting for Col and you to come through this safely together.

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  55. Best wishes to you and prayers for the success of the new medication. I hope this is the answer for your husband.

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  56. wishing you both the very best. Keeping you in my thoughts. x

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  57. Sorry Sue, only just seen this (we have been travelling and had no internet). I have no words - only to keep positive. Of course, we are all behind you both and wish the very best outcome for Col. Take care and keep us informed. X

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  58. I keep forgetting you have moved over here and am doing a catch up read , Good luck with the new treatments it must have been a difficult decision to have to make , Take care xxx

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