Sunday, July 4, 2010

Journeys Continued

Starting again, because the previous blog got too big!! :-)

60 comments:

  1. Just quickie - this an email I sent to my kids. I'll be back later...

    Hello Kiddos,

    I’m sorry that we have been so uncommunicative since we returned from Tenerife. Our first priority when we arrived back in England was to go to Canterbury Hospital for the annual check-up on Kathy’s face. As you know, the doctors there were concerned by the appearance of small brown flecks in the scar below Kathy’s right eye. They took an immediate biopsy, which confirmed the emergence of a malignant melanoma that was highly dangerous.

    So over the past few weeks we have been preoccupied with multiple visits to hospital during which Kathy has been through a series of tests and consultations that led up to her operation last Friday. She is back home now and recuperating.

    The good news is that neither MRI nor CT/PET scans have shown any spread of the cancer from Kathy’s face. And the other good news is that Kathy is as bright and cheerful as ever. But her face has changed.

    She has temporary staples and stitches running up the side of her neck to behind and in front of her ear, and then continuing on just fractionally below her eye across to the top of her nose, then down the side of her nose, finishing just above the corner of her lip. It is a very, very long wound. The surgeon had to remove a lot of cheek tissue and some bone, and had to cut through several facial muscles and nerves. The effect is that her cheek is now depressed and she has lost a lot of feeling and control over her cheek and the top right hand side of her lip.

    As she says, her cheeky grin is now definitely lopsided and very wonky indeed!

    This week we will be at home doing everything we can to help the wound mend. The staples and stitches are due to come out on Friday, by which time we hope to have the biopsy results on the tissue that was removed during the operation. What we are hoping and praying for is that the biopsy shows a good margin around the edges with no evidence of the cancer.

    Well, that’s the news. We are definitely out of circulation for a while, but I will let you all know how things stand after next Friday.
    Cheers!
    Dad xxx

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  2. Thank god there is no spread. Praying for clear margins. Is reconstruction in the plans down the road?

    Remember my mantra: I have cancer. Cancer does not have me!

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  3. Yes, terrific there's no spread, and definitely wonderful that Kathy's home already and that she's kept her spirit.

    Do hope the surgeons will be able to bring back the feeling and control very soon - keep battling and loving, both of you

    xxxxxxxxxx

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  4. Thank you.
    This is the only place I have where I can let the tears flow.
    Don't worry, we will win.
    xxxxx

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  5. Some very serios comment from me. This is truly a devastating situation for Kathy. She has so much to deal with and even though she is now coping well there will be times when it all gets overwhelming. Yes, I believe you will win, but listen up.... you are her rock and that's a hard thing to be. I know. I am now the family Matriarch for the younger generation in the UK (my elder brother being so far away) and I have people leaning heavily on me.

    Be strong, but realize that you must take care of yourself as well so that you can stay strong. She will have good days and bad days, as will you. Continue to reach out to your family and friends. Let them help you both.

    I am humbled by Kathy's courage. She has so much more to handle that I have.

    Love. XXXXX

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  6. I am sending you love and good wishes across the miles. For Kathy with her melanoma and me with my breast cancer, life has changed irrevocably. We will always be on the alert for signs that it is back. This is the way it will be. But we will live with it and cope with it.

    I'm crying now. God bless.

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  7. Chris – spot on about being the rock... On Friday, when Kathy had her operation, her younger daughter had a routine pregnancy scan at another hospital and learned the babies (twins) had failed to form. I had to break the news to Kathy. I’m like you, I guess. Rocks only cry when no one can see...

    You haven’t mentioned your progress. Are you comfy? Are you recovering well? When will you be working on the book again – or have you already started?

    I want both you and Karen to know I’m very moved and hugely grateful for these chats. You are both magnificent pals. :-)

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  8. i am very comfy, thanks. No pain and no problems outside of the expected discomfort from the incisions. I see my surgeon for a post-op follow up tomorrow. He did not call me with the full path report so of course I am hoping that no news is good news and that margins are clear.

    I have been working on the neglected book all day today...past the Great Depression and up to The War Years now.

    I am so sorry about the babies.

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  9. Good about the book!

    We are in the aftermath of the storm now... time to be grateful, count casualties, move out, move on, with time for reflection too, about good friends well met.

    I'm keeping the Vendee up my sleeve - but which season, I wonder... which year?

    Tons of xxxxxxxxxxx's :-)

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  10. CI - really sorry to hear about the twins. Don't forget to drive into the country at regular intervals - there you can revel in a gigantic SCREEEEEAM and Torrential Tears. Essential for your own well-being, which is as important as everyone's. Continued Strength to Kathy.

    Chris, delighted to hear you're working on the book. Hope the post-op visit went wonderfully today. Stay on good form, and John too.

    Warmest love to you all
    karen

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  11. Not quite the news I hoped for. One focus of DCIS still present at "final resection margin." So a re-excision is scheduled for July 19th to hopefully scoop that out and get clear margins.

    And if that doesn't work, I have the option of a mastectomy. It is far from the end of the world.

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  12. Hello Chris - yes, this is a setback, but we've got to believe it is only a temporary setback. Your surgeon knows more now, and that must give you grounds for optimism.

    This journey is step by step, but we'll win. Chin up, we'll be here, rooting for you!!!
    :-)

    PS Karen, you were right. A SCREEEEEAM really does work! :-)

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  13. Oh Hell, Chris - what disappointment, and shock, no doubt. As CI says, the surgeons are on top of the situation, so let's hope Re-excision and Scoop will do the trick.

    Keep boldly going, Chris and Kathy and Ian and John

    xxxxxxx

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  14. We've spent three days on the road, zig-zagging between Ashford, Hythe, and Canterbury to do face-to-face meetings with physicians for Kathy's daughter.

    Kathy's daughter has now been installed in the best private hospital in Kent for a D&C, etc.

    Kathy is a superstar. Kathy's facial stitches and clamps were removed afterwards, today, almost as an afterthought.

    I love this woman to bits!

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  15. I understand what you mean by "D&C, etc." While this is traumatic, she is young yet and there will be other babies.

    Once again, I am humbled by Kathy's courage and uplifted by your love for her.

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  16. Ian - '...almost as an afterthought'. - sums up the appalling period you and Kathy and daughter are going through.

    Your posts are inspirational - continued courage and Blooming Health Soon to you all.

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  17. Hugely uplifting moments today! Kathy spent 20 minutes on her exercise mat, and followed that up with her first shampoo since the op!

    Yippee!

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  18. Fantastic, CI - what Joy! (except for the exercise mat)...

    warmest thoughts to you both.



    Chris - How are you - Feeling positive about the next stage on the 19th? Keep Strong.

    xxxx

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  19. Ah, yes! The first shower. The first shampoo! One feels immediately better. There is nothing worse after surgery than feeling grubby and not quite fresh but banned from the shower.

    Karen, I am well and ready for whatever comes along. If my surgeon gets clean margins, that will be fantastic. If he does not, I am ready for the simple mastectomy (no lymph node removal involved and no chemo or radiation afterwards). At my age, it's just another diseased body part I don't need...a bit like an appendix. In either case, it's a 98% survival rate and I like those odds.

    CI, what about Kathy's margins? did you get results yet?

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  20. 'simple mastectomy' - brilliant, Chris! You make it sound so Jolly-Day-Out - am filled with awe.

    Sending positive fluences and hopes to you and to John.

    Warmest wishes to you and Kathy too, Ian

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  21. Unfortunately, when one is diagnosed with cancer of any kind, one soon learns a whole new vocabulary. I was not being brave or lighthearted. There are different degrees of mastectomy terminology....simple, modified radical, radical.

    A simple mastectomy is the most straightforward and does not involve lymph node removal. The others are much more invasive. I am a candidate for simple mastectomy since by node biopsies were negative.

    Your warm thoughts are always welcome and those do uplift me.

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  22. Hello Both.
    The last of the tapes on Kathy's face have gone, and now we're busy watching the healing happen. It's really, really good progress! Much better than we'd thought!

    We're still waiting for the biopsy results.

    Chris - I wish I could give you a huge hug (yes, and you too, Karen)!
    :-)

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  23. Ah-haa, Chris! Rather like the Simple Brain Removal I've evidently undergone...
    In any case - your words are STILL awe-inspiring.


    As are yours,Ian, as you watch the Healing happen. Hope the biopsy result come quickly and Positively.

    And looking forward to big hugfest with all!

    xxxx

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  24. Can you believe it?

    We just heard - our appointment with the surgeon is at 3.20pm Monday 19th July.

    What can one say?

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  25. Spooky!

    That's 10:20 am my time. I will be out of recovery and on my way home, then. My surgery is at 7:30 am.

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  26. It is well after midnight here and I've been busy checking.

    There are no Spooks. Just us. And we are good folk.

    (Spooks would say that, wouldn't they?)

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  27. Good luck for tomorrow, Expat. I'll be thinking of you.
    xxxx

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  28. Masses of Luck for tomorrow, Chis and Kathy - be thinking of you too

    warmest wishes to all, karen
    xx

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  29. Just got a call from the hospital - our appointment this afternoon is postponed until next Monday!

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  30. Oh, no! Another week of waiting. That's hard. Still, on the positive side if there were cause to be concerned about margins they would get you in sooner somehow, I think.

    Back home after the re-excision and feeling good overall but a bit tired from the anesthetic so a nap is in order. Since the area of re-excision was so small, the procedure was a delicate one and I will not know the results until the full path report is available in a few days. I will keep you all posted.

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  31. Hell's Teeth, Ian - that is evil of them.

    Chris - hope you're enjoying beautiful dreams.
    Keen to hear the results

    take great care, all

    xx

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  32. Just got the news! CLEAR MARGINS! Nothing left behind. I am absolutely exhausted now...relief. So it's radiation ahead, but that's all.

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  33. Just read your glorious news!!!
    What a giant leap forward!!
    Huge hugs from here!

    I knew you'd come through.
    :-)

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  34. Yes, a huge leap. The journey continues, of course, but it is no longer uphill.

    I feel very strange. I had forgotten what relaxed feels like. I suppose that I didn't realize just how much the tension was affecting my body. Now my body is saying "OK, woman, now can we finally get some rest!" I have been sleeping a lot today, but not for long at a time.

    My focus now is nutrition...eating the right foods to keep my immunity system up during radiation and the fatigue that the treatment induces. Schools of thought vary so I think I will get a 'personal nutritionist' on board.

    But fatigue I can deal with. It is infinitely preferable to chemo which can be so debilitating in so many ways.

    So, that is one focus. The other is Kathy. She is held very close in my heart and I am wishing the time away until Monday and the peace of mind I pray that day will bring for you both.

    Karen, you, too, have been a rock through this, a much valued friend whose optimism, kind words and uplifting thoughts have, and continue to be, enormously helpful to me. I envy those who are lucky enough to have you around in 'real life.' But for now a virtual hug will have to do,

    I love you both.

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  35. Chris, what absolutely fantastic marvellous news - I'm so THRILLED! You've been so courageous, and your positiveNess shines as you face the radiation - tons of luck.
    (Thankee for your exceeding kind words).

    Lots of love and warmth to you and to Kathy and to you, Ian, and John - Keep Being Strong!

    xxxx
    karen

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  36. There's so much to say. I've been feeling I've been going nuts recently. So I started reading about nuts, and came across this:

    I woke up the other morning and found that everything in my room had been replaced by an exact replica. So I rang my best friend and told him that everything in my room had been replaced by an exact replica. He said "Do I know you?"

    It made me laugh out loud, so I thought I'd share it, because laughter is good news too.

    :-)

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  37. Thank you, CI - made me scare the cat with sudden burst of hilarity too.

    Keep plunging into your potty researches please, and keep laughing, you and Kathy.

    love & warmest wishes
    karen

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  38. Loads of luck for tomorrow (Mon 26th) Kathy. Ian - be thinking of you both all day.

    love & warmest wishes
    karen
    xxxx

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  39. From me too....you are both in my thoughts.

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  40. We met with the full operating team and alas, we didn't get the news we'd hoped for.

    During the operation the surgeon had to remove tissue with margins varying between 2-4 cms and had to remove a lot of bone. He followed the melanoma which was clearly tracking along a nerve up behind Kathy's eye until he couldn't go any further without taking the eye out. He said there was only a faint chance that he'd removed it all.

    The future is also uncertain. If the melanoma is still there, which is likely, then it may stay dormant, or progress to the brain, or it could spread to another part of the body.

    The consultant in charge likened this scenario - and any attempts by his team to contain the melanoma - to "trying to get a grip on a jelly". In other words, there is no certainty attached to the outcome of any further procedure. In Kathy's case, any further invasive surgery would leave her even more disfigured, without sight in her right eye, and worse, without any guarantee that the melanoma had been removed.

    We are now waiting for a small further operation to be scheduled soon, which will correct some post-op puffiness near Kathy's mouth and which will also correct a droop in the right hand side of her mouth. A "simple nip and tuck" which will boost morale.

    So that's it. We are now going to live life to the full. And both the surgical team and our family doctor, who we visited today, agree. Our strange lifestyle of living in two countries, and travelling to other places as and when, will continue. We are lucky in that we have each other, and can carry on doing the stuff we both love.

    You are wonderful friends. You have no idea how much you help, and how much I admire you both.
    :-)

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  41. This is devastaing news and I ache for you both. Your courage is awe-inspring. Whatever the future may hold, I know that you will both meet it head on.

    As you say, live every second of every day to the full.

    Much love to you, my friend.

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  42. Chris -
    We know too much, because that's way we are. Defeat is easy to bear when you cannot lie down.

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  43. Hell's Teeth, Ian, all that 'getting a grip on a jelly' is ghastly news, but as always, you and Kathy are exuding enormous strength and courage.

    Hope the 'morale-boost' operation happens soon. So wish we could do more than send positive vibes and sincere hope for the better news you deserve.

    You are both inspirational. Keep enjoying life together to the very full.

    lots of love and warmest wishes
    karen xxxxxxxxxxx

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  44. Ian:

    I have been thinking about your last post all day. "We know too much.." tells me a lot. You know the prognosis and the likelihood of further activity in the melanoma growth, and you mention defeat. My heart is heavy. The burden that Kathy carries, as do you, is great. I don't know that I could face what you might have to with the same attitude. Compared to Kathy, my cancer is trivial.

    I do want you to consider alternative therapies at this point. These will not make the melanoma go away, but there is research to support the slowing of growth.

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  45. Hello Both - I haven't gone away. Just need a pause...

    How are you now, Chris?

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  46. To be honest, I'm not comfortable talking about me when my journey is now downhill.

    I will do it this one time, then enough. My re-excision yielded clean margins of 2.5 cm. The final path report stated negative for residual DCIS or infiltrating carcinoma. I am set for radiation therapy starting at the end of August. I will not need chemo and should not need additional treatment (any cancer-fighting drugs). Just close monitoring with regular mammograms, probably 3-monthly progressing to six-monthly then annually.

    Ian, if and when you want to talk, Karen and I are here to listen. If you decide that you would rather not talk, we will understand. Just know that you and Kathy are in our hearts and thoughts on a daily basis.

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  47. Yes, Ian, Chris has put it very eloquently.
    Just breathe deeply for a while, and I hope you can find moments of blessed distraction.

    Chris, it's terrific to hear the stage you've reached - hope the radiation goes as smoothly as possible.

    love and warmest wishes to you and Kathy and Ian and John

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  48. Chris - Karen -

    You are so perceptive. Chris, I love your forthright way. Karen, your cheerfulness is a joy. Your menfolk must be as over the moon about you as I am for my Kathy.

    My news is that we have another meeting with the surgeon on Monday 9th. It will be about the "Nip and Tuck" and another opportunity for us ask questions about the future. Future symptoms, what to do, that sort of thing. It's important to be prepared.

    Kathy wants this next surgery, so that's important stuff. And she's been on the internet, reading about alternative therapies.

    Today she got up at 5am to help her eldest daughter set up shop at a boot fair! Amazing!

    Please forgive me for having disappeared. Words have failed me recently, but Chris, your hugely good news has helped me a lot.

    I do want to talk! Yippee!
    :-)

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  49. Hi Ian. Your 'need of a pause' talked many tomes-worth...

    Kathy is indeed astonishing (if bonkers!) - up at 5am?

    Next Monday will be a great day to get past and be armed with info and plans.
    For ordinary specimens this intervening week would streeeetch endlessly, but I imagine your waiting will be jam-packed with more jolly projects to help out Everybody Else.

    You are both Remarkable

    xxxxx

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  50. Spot-on Karen!
    The things we've been up to recently - every day a blur of activity! Two trips to IKEA to buy some much-longed-for flat-pack bookcases, then all the fun of assembling them, positioning, and filling them with our stuff that been hidden away in boxes for years. And completely re-routing the satellite TV arial wiring so that it is now invisible on two sides of the building. And visiting friends and family, and throwing a dinner party, and completely tidying our loft...

    Today we are off to the flat (the one by the churchyard that I think I once wrote about which we rent out) to deal with an overgrown flowerbed and a tree branch that is touching the garage roof.

    Yes, we are keeping busy and doing it all together. We are a brilliant team, and Kathy is a marvel.
    :-)

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  51. Being forthright again...are you prepared to talk about the stage? I will understand if not.

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  52. Chris - yes! We'll know more after next Monday's meeting.

    We're entertaining my eldest daughter overnight, and I'll write again after she's left.!

    :-)

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  53. Well, my daughter is on the train back to London, leaving us with a lot of warm feelings and a gift - a book about cancer that looks very readable and may well be useful.

    I'll ask about the formal stage we are at when we see the surgeon on Monday. After all our busybee activity recently, we are both quite tired, and looking forward to a peaceful few days. We'll be going for walks, holding hands, chatting, and just loving each other...

    I'll keep popping in here, and when we have important news, I'll let you know. And vice versa I hope!

    xxxx :-)



    That's going to be so good!

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  54. A Tale of a Disgusting Doctor

    I had to go to see the medical oncologist. It's protocol to follow up with all members of the team. I have only seen him once before and John was with me. This time I went by myself. He told me what I knew already...that I do not need radiation. During the consultation he asked me to stand beside him so he could show me the options if I need to take any cancer fighting drugs after the radiation. This man is probably 55 years old. As I stood there, he suddenly put his arm around me and hugged me hard, then leaned in close actually against my body on the pretense of reading a document he had conveniently placed to my left. I was shocked rigid for a few seconds then shrugged him off and said EXCUSE ME!!. He removed his arm and carried on without missing a beat as if nothing had happened so I am sure he has tried this on before.

    Needless to say, I will not be going back to him, even if I have to travel 50 miles to see a new oncologist. I don't want to report him because I think he is by and large good at his job and has surely helped a lot of people over his long career. But I will discuss this wiht my lady radiation oncologist and suggest that a colleague has a word with him.

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  55. Sorry...I meant I do not need chemo.

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  56. Hello Chris!
    I'm sorry you had this experience. After what you've been through, and are still going through, this is the last thing you need.

    I agree that you should not see this medical oncologist again, and you should request a change to a different person in the event that you need another consultation.

    That is your most effective response, and you don't have to give a reason for your decision.

    If your response is part of a pattern that your medical team can see, then fine, and in extremis, they will come to you (and to others) for support.

    So you don't need to do more than that now. You need to focus on yourself for now.

    Hmmm... I'm going to take up a new career as an Agony Uncle!

    Take care, my dear friend. :-)

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  57. Hell, Chris - that's Appalling. As with everything, you dealt with it brilliantly (refraining from an enthusiatic kick to his gonads was a masterly display of control).

    Your strength continues to amaze...

    love and warmest wishes, as to you and Kathy too, Ian

    xxxxxxxx

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  58. Hi Ian, and loads of luck to you and Kathy tomorrow. Hope your meeting with the surgeon answers all your questions and signals good things for the future.

    warmest wishes, karen

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