Tuesday, 29 November 2016

I think we are allowed to swear..............

..........................but there would be no point.

We could jump up and down, stamp our feet and yell that it isn't fair...........but there would be no point in that either.
Why?

Because, Col's mantle-cell lymphoma hasn't gone , instead it's coming back. The results of the bone marrow sample taken a couple of weeks ago were not clear of it, the CT scan showed the spleen is enlarged.
We should have known really from the fact that the platelet count wasn't rising.

So after the shock we are straight onto plan B. A new, specially applied for and very expensive (another heart-felt thanks for having an NHS!) medication, new as in it's only been available for 2 years, but has shown good results. Then another stem cell transplant, this time from a donor and luckily one of Col's siblings is a match. This treatment will be based mainly at Addenbrookes in Cambridge so I envisage lots more traveling, but not quite in the way we had planned.  :-/

The tablets start immediately, and  have a mile long list of side effects so we have no idea how he will be feeling in a few days or even a few weeks time. Next week we meet with the specialist nurse for more information about time scales as we were almost too shocked to take in all that the doctor told us yesterday afternoon.

On a much more cheerful subject, this morning we've been over to see our beautiful granddaughter Florence, 7 weeks old today. Our youngest told us the best time to come to see her awake and we managed to make her smile several times. It will be lovely to see both grandchildren together at our son's wedding next month.

Back soon
Sue

73 comments:

  1. I wasn't expecting to read that Sue. I am so, so sorry.
    Thank God for beautiful Florences' smiles to cheer you for a while.
    Hugs and healing thoughts to you both-x-

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  2. you are definitely allowed to swear. Sorry for this. I really am. Sending positive and healing vibes. xx

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  3. I am so sorry, you are a wonderful couple and I am sure your positive attitude will help with your DHs healing . Bless you both and thank heaven for the blessing of such lovely grandchildren.

    Rinty

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  4. Sorry to read this - how utterly frustrating -thoughts and prayers with you all.

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  5. That was an awful shock to read but not nearly as much as it was for you to have to write, I am sure. Swearing won't alter the fact but if it helps, go ahead. Praying, sending positive vibes, etc.
    So thankful that you have the consolation of lovely grandchildren to balance the other.
    Much love
    J xxx

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  6. I'm sorry as well. Why do the wassacks just sail through life, and others struggle. Lovely Florence will help! Take care, both of you.

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  7. Oh Sue!
    Sending positive thoughts to you and Col. There are lots of bugs and cold-type things about at the moment, keep Col away from those if you can, half our friends and neighbours are coughing and sneezing.
    Loving to hear about the grandchildren. Nothing compares to the love for a grandchild does it?
    Gillx

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  8. Oh bugger! There, I've sworn for you. Life's a bitch sometimes isn't it? I do hope the new meds and donor transplant have good effects, and that Col and you can cope with the bad effects. What a lovely smiley granddaughter.

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  9. Oh what a bummer, I really hope the new medication works well for Col

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  10. I think you should do a bit of swearing anyway. So sorry to read this Sue. Much love. X

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  11. What a shock for you both. Good thoughts are coming your way-you really are an inspiration about how to cope with serious illness. Lovely photo of Florence. I've sworn enough for all of you on your behalf but keep looking at those beautiful faces of the new generation when you feel overwhelmed. Catriona

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  12. Oh no, Sue, what terrible news. Please swear loudly and often - this is just not fair. Sending loving and healing thoughts and prayers to you both. At least there is a plan B, and a donor, and Addenbrookes has a wonderful reputation. And little Florence is a smasher!

    What a class 1 bugger! There - I've said it too!!

    Xx

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  13. Sue, I'm so sorry to hear this news...you, Col and the family have my thoughts and prayers that the new medication and stem cell transplant gives a great outcome.

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  14. Oh, how very disappointing. I so hoped he was on the mend now. Thank goodness there is a Plan B and that you have the wonderful Addenbrookes available to you. Life seems so unfair sometimes. I admire you for not swearing and ranting - I doubt I'd be so restrained even though it makes no difference. Love to you both. Helen

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  15. You and Col are in my prayers 😘

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  16. So sorry to hear this, best wishes to you all.

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  17. Oh Sue, I was so shocked to read that Colin was going to have to have further treatment, as my friend would say, in her very refined way 'oh buggah'.

    You will all be in my thoughts over the coming weeks. Please take care of yourself. Anne.

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  18. Thank the lord for the NHS asci believe they will do everything possible to help you through this awful time. Prayers and hugs, keep strong. Tx

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  19. Oh my dear soul, I am so sorry to hear this, hugs for you both, strong vibes coming your way for a successful outcome.
    Margaret P

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  20. Oh no ... swear away! I would have a rant and a rave, slam a few doors and then and only then do what you and Col so stoically, just get on with things. I'm so glad that there is a plan B and at such a good hospital, it's reputation is second to none.

    Your grandchildren are indeed a much needed blessing at the moment. Florence is absolutely beautiful, and that smile is lovely, well worth waiting for.

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  21. So sorry to hear this news - as others have said it's so very unfair and you are entitled to swear if you want to - thoughts and prayers being sent in your direction xx

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  22. What shitty news. I hope this next round of treatment makes the difference and gets your man well again. Sending some love and healing.

    Jean

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  23. Sorry to hear your news, my thoughts and prayers are with you, xx

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  24. Have just seen this news on Facebook Sue. What a horrible shock for you both, and all your family - and all your followers too.
    Holding you in the light (in the Quakerly way).

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  25. So terribly sorry to read this and Col's post on Facebook. Swear away! Many prayers sent your way. Reach out for any help you need. And I must say, you have the most beautiful grandchildren ever.

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  26. Hugs coming your way from me to you.
    xx

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  27. Words don't come easily from me at this news. Sending big hugs to you both. x

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  28. Sue and Col - what can I say - there are no words and how can I possibly know how you are feeling? Love to you both from both of us.

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  29. Here's praying that the new treatment works!

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  30. Oh dear.What a blow.Fingers crossed the new treatment works.Thinking about you.
    What a sweetie that little one is.That smile must lift your hearts.

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  31. Oh Sue, lets hope the new treatment knocks it in to remission. beaming you and Col love and thoughts through the internet ether.

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  32. Ah, shocking just to read that!
    (My husband is recovering from pneumonia)

    May your Plan B be the one that returns Colin's health.

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  33. Oh no - so sorry to read this, but praying that the new medication works straight away for Col. (((BIG))) hugs to you both from me.

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  34. So sorry to hear this latest setback. Sending positive thoughts to you both. Sue x

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  35. Sheesh that's bad news, but there are options and as you say, thank god for the NHS. Sounds like things will be very tough, but then so are the two of them.

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  36. So sorry about Col's news. Certainly not what you wanted to hear. Sending big hugs your way and hoping new medicine works.

    So thankful for the NHS. I don't think it is appreciated enough. I know that I never did until I came to the states. I was so thankful when my Mum got sick that she didn't have to worry about the cost of the cancer treatment as well as being ill.

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  37. Such a shock to read this. Praying that this new medication works and there are no side effects from it, and that the new stem cell transplant works. Will keep praying for you both, but enjoy your beautiful grandchildren to help you through this.

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  38. Hi Sue! I have been reading your blog for a while and am sorry that this post has made me comment, for the first time. I can only echo what everyone else is saying and wish you and Col the very best.
    Frances SW

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  39. Such worrisome news but you have a plan in place that holds a lot of hope. Modern medicine today makes miracles happen.

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  40. Oh Sue So much love to you and Col. Our wonderful NHS and doctors will work through this I'm sure I'm just so sorry for all the upset and stress and pain you are both feeling. Stay strong and think of all the positive thoughts being sent to you both Jane xx

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  41. Oh, Sue. What a blow for your family again. So, so sorry. Will continue sending prayers.

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  42. So sorry Sue and Col to read this, I really have been hoping for the best, and we will continue to do that, we just might have to carry on a bit longer than planned. In the meantime you can use any language you like, here or in "real" life. Your supporters are behind you every step of the way. xx

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  43. So sorry to hear this, prayers and positive thoughts winging your way.

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  44. I am really sorry to hear this Sue, and send you and Col my very best wishes - thinking of you xxx

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  45. Very very sorry to read this news. Thankful there is a medication that will help in the fight and that one of Colin's siblings is a good match for the stem cell transplant. Prayers for you both. Take care.

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  46. Sorry to hear about this setback, I hope the new medication works well for col. xxx

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  47. !@#$%^&*(S|!@#$%^&. I just said a real mouthful for you! So sorry to hear of this setback .. I truly hope the new medication and stem cell transplant will work. So many good thought being sent to you across the miles.

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  48. I'm so sorry to hear this. I hope you can both try to stay positive as you pursue this new (and successful!) form of treatment. Thinking of you... -Jenn

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  49. I am so sorry Sue. I am glad that you got on to Plan B immediately and I am hoping this new treatment is fully successful.

    I will be thinking of you and sending healing thoughts and prayers your way.

    God bless.

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  50. Buggery buggery bollocks - so sorry to hear about the setback. I hope the new medication does what is hoped.

    Florence has the most gorgeous smile!

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  51. So sorry about the setback Sue.
    Sending good wishes and best love, keep positive, all will be well.
    Pam in Texas.xx

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  52. I wasn't sure what the title waa leading up to....oh dear me. Sorry to hear the bad news. You two have had some good times together lately. Your grandbabies are so cute and glad some things are going ok. Prayers for new meds to work ok for Col and minimal side effects. Be strong and of good courage. God is there for you both. Hugs!!

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  53. I am so sorry to hear this. Thinking of you both!

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  54. Sorry to hear about this setback, but glad that there's a new medication and additional treatments planned. Hope all will be well, eventually.

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  55. Sorry to hear this. Sending love from our family to yours. X

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  56. I hope you did have a good swear, it doesn't change anything but it can make you feel better momentarily. My thoughts are with you.
    Lisa x

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  57. Really sorry to hear this , Thinking of you xxx

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  58. Hi Sue and Col, I'm so sorry you didn't get the news you were hoping for, but hang in there. Sending you healing and peaceful thoughts All shall be well. Blessings

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  59. I was surprised to read this today. I have been thinking about you both and feeling so positive. But more prayers coming your way. Hang in there.
    Florence is absolutely beautifu! What a sweet smile. :-)

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  60. That is rough news to deal with, but hopefully the new treatment will help. Be strong for each other and you'll be in my prayers.

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  61. So sorry to hear he didn't get a remission. It's so difficult sometimes especially after just going the a SCT. So do you know the name of the drug? I was on Revlimid for quite a few years and then Pomalyst. Since I have myeloma not mantle cell, but their both blood cancers so maybe there is a cross over. Revlimid put me in a VGPR and the side effects were minimal. Good luck with it all.

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  62. Oh Sue, I'm sorry to hear this. Good to hear the hospital is on the ball and moving forward with plan B though. My best wishes to both of you.x

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  63. Hoping Plan B will work. Sending virtual hugs . Your grand babies are delightful. Take care.

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  64. Grrrr! So sorry to hear the news - couldn't read and run x

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  65. So very sorry to hear about Col, I can only imagine how floored you must both be feeling. Thank goodness there is a plan B and that results are favourable.

    What a cracking photo of Florence with her big smile. xx

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  66. Oh Sue I have only just read this post. So sorry about the news, good luck with the new meds and you have a wonderful attitude.

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  67. I didn't read your post until today. I am so sorry for you and Col. You both have remained in my prayers. I don't know why I feel so close to both of you since we have never met and I'm in America, but I admire you both very much.

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  68. Sue, I'm only just catching up on blog reading, so have only just seen ypur post.
    I'm so sorry to hear Col's poorly again, and I've had a mega swearing session on your behalf!
    Life just ain't fair!
    All my good wishes to you both for a successful outcome after this next round of treatment.
    Of course, grandchildren cuddles will buck Col up too! X

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  69. Not the news you were hoping for, my heart goes out to you. Florence is beautiful and must help you stay strong. Wishing you both strength for the next round of treatment.

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  70. So sorry to hear this, Sue. I do hope Plan B sorts Col out. Lots of family visiting will help, I'm sure.

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  71. Oh, @~'#.
    Sorry, just read this.

    Plan B is always a good thing to have. Mind you, I always have a plan C tucked away. I haven't had to resort to it yet, hope I never will.

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  72. Keeping fingers crossed for the new medication!!

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