Wednesday, June 16, 2010

Journeys...

This isn't a proper blog, it's just a space to share.
:-)

39 comments:

  1. For the third day running, we made another visit to the hospital, this time for the MRI scan.

    When we returned home there was a letter from the hospital awaiting us. Kathy will have pre-op consultations on 25th June (the same day as your operation, Expat) and on 30th June, followed by an initial operation on 2nd July.

    Like two years ago, the wound will be left open, pending a further biopsy. If the biopsy is OK, there will be a second operation involving cosmetic surgery and to close the wound.

    But that plan may change depending on the results of the scan...

    More anon. We didn't get any sleep last night - we were chatting till dawn - and we need to sleep!

    Strange how we've given ourselves a dose of retail therapy after each hospital visit. Today we bought some baby stuff for Kathy's daughter who is pregnant.

    And tomorrow will be exciting - we are expecting a delivery of a different kind - a new freezer!

    I think we've become shopaholics....
    :-)

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  2. What a bright and bubbly post, CI, about such dire stuff.

    Wonderful news about Kathy's daughter, and many congratulations to her and to Kathy.

    Keep chatting and shopping, and exuding joy together.

    Expat - how are you and John today?

    Take care, all

    xx

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  3. Hi Dolores!
    Our shopping spree continues unabated.

    Yesterday was new freezer day. Today was frozen food day, new TV day, and a new pair of Kathy jeans day. Tomorrow is new satellite dish day.

    For Sunday, we plan a BBQ day for Kathy's family.

    Irrational exuberance is a great morale-booster!!!
    :-)

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  4. Brilliant CI - you are beautiful models in a showhouse! keep Exuberating, and Very Happy BBQ tomorrow!

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  5. Thanks Dolores! Big smile to you :-)

    The satellite dish was installed today, and the new TV is fan-dabby-dozey. Zillions of channels to scan!

    Yet another letter arrived this morning from the hospital - we have a meeting on Monday at 4.30pm to hear the results of the MRI scan.

    Hugely important, and I'll let you know...

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  6. Yes please, CI. I think you must actually be in the MRI meeting now - 4.48 your time. Sending Loads of Luck over

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  7. HURRAH! :-)
    The MRI scan showed no extra problems with neck and shoulders! HUGE, HUGE relief!!!!

    Dolores - Your Loads of Luck worked!!!

    The surgeon wants to do a PET/CT scan next, just to make absolutely sure. And the other good news is that surgery will be done as scheduled on 2nd July, and all in one go (not over two ops).

    The surgery will involve taking away a lot of skin from the face below the eye and will remove tissue down to the bone. The details are pretty grim, and Kathy will emerge from it all with a somewhat more lopsided grin, but hell, who cares? The only important thing is that she survives and is healthy. The surgeon said that without the operation, the cancer would be fatal...

    Family has been great - lots of phone calls - and now things here are calmer. I'm about to pour two glasses of our favourite tipple and have a big cuddle.

    PS. How do you draw a slightly lopsided grin?

    :-? (my best effort so far)

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  8. Hi CI

    Fabulous News (sort of)... Great there's only ONE op.

    On all the days of dolores, Expat has commented that she can't comment on here because 'there's no Name Option'.

    Said I'd let you know she's been trying - is it possible to tweak the access somehow?
    (Or is that defeating the object)

    Take great care, you and Kathy, and let's hope we can hear from Expat soon...

    xxx

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  9. FROM Expat, (posted on Days of dolores while She's unable to post on Journeys).

    I am well. Getting a little nervous as the surgery approaches. Very relieved to read that Kathy is just facing the one surgery and that her MRI came out well.
    June 22, 2010 6:24 PM


    TO Expat: Be thinking of you on Friday - keep strong, you & John - really looking forward to hearing Joyous News afterwards.

    xxx

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  10. Oh No! I'm so sorry!! I'm mortified that Expat couldn't join in!!! I've checked the settings on this blog and corrected them!

    Thanks Dolores!

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  11. Brilliant, CI. Keep having lots of fun and shopping frenzies, you and Kathy

    xxx

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  12. Well, it's 4 am and here I am at the keyboard with my cup of tea...again. I'm not sleeping well, I admit I am nervous, now. I know so much more than I ever thought I would need to about breast cancer yet there are still unknowns about my particular condition. Will the lymph nodes be affected? will my surgeon get clean margins when he removes the tumour? Is there anything else lurking beneath the DCIS? These questions will be answered on Friday, determining my treaatment over the next couple of months. I have no lymph node swelling (a good sign) and DCIS by definition is not invasive but things can change so quickly.

    CI, I am thrilled about Kathy's MRI results. I, too, had a CT scan along with a bone scan. The CT scan showed a couple of potential problem areas on spleen and liver that a follow-up ultrascan showed to be very common benign cysts that millions of people have and never know it.

    Kathy's diagnosis and surgery scheduling have been surprisingly fast for the UK. Is she under national health or a private system like BUPA?

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  13. Expat!!! Yippee!!! Thank goodness you are here!

    We have been sharing all of the unknowns that you have mentioned. In Kathy's case, the surgeon could detect no swelling of the lymph nodes and there were no abnormalities detected by the MRI scan, but her constant pain in the neck and shoulders is a real worry. That's why the surgeon has booked her in for an additional CT/PET scan first thing tomorrow morning.

    The biopsy after Kathy's second operation two years ago did confirm clear margins around the tissue that was removed. But here we are again, with these dangerous brown spots having appeared on the scar on her face. This time the surgeon says he will dig deep as well as wide, but I'm wondering now if a more aggressive post-op regime, including futher scans, may be advisable. And I guess that might be the same for your DCIS.

    You are right about the speed and intensity of the investigations here. Kathy is being treated under the NHS, but the difference now is that everything has happened in our own local Canterbury hospital, which is brilliantly equipped with MRI and PET/SCAN equipment, all under the control of just one very dynamic surgeon (two years ago we were running around between Ashford and Margate hospitals, as well as Canterbury).

    Well, Friday is your big day, and Kathy's will be exactly one week later. Let's keep up this way of communicating. I certainly find it hugely helpful, which frankly astonishes me. You see, I'm the kind of bloke who thought he had gone through life never needing or asking anything from anyone, who can fix anything, and who now belatedly finds out how totally untrue that is.

    So here I am, whizzing around taking Kathy on a shopping spree. Today we bought yet another TV and digital decoder, this time for our bedroom, and a new DVD player for the lounge. We must be the most techy-savvy and best equipped people in our neighbourhood! But all this shopping squeezed in between multiple hospital visits has given us a fun diversion and a shared sense of achievement (home-building never stops, does it?) and has been great therapy.

    I'll be rooting for you on Friday. And for John. I just know we will all come out winners here.

    xxxxx :-)

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  14. CI, there comes a time when we can't fix things ourselves and must put our faith and trust in others. This is one of those times. It sounds like Kathy and I both have good teams working with us. And sharing our journeys here is helpful for me also.

    Odd, but I have been having upper arm and shoulder problems for several months, but in my right shoulder whereas my cancr is on the left. My head (and my GP) told me it was a torn muscle from shovelling snow, But after the cancer diagnosis and before the bone scan the devil on my shoulder kept saying "What if it's a tumor?" What I am saying is that EVERY ache and pain takes on an importance it may not deserve. Wait and see (Oh God, the waiting is the worst). I am sending best thoughts for a negative outcome.

    My escape is work, not shopping. I love what I do and it takes my mind of what lies ahead, at least for a while.

    May I ask what kind of skin cancer Kathy has?


    XXXX

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  15. Hi Expat - two years ago the brown patch that had appeared below Kathy's eye was diagnosed as a lentigo melanoma that was not malignant, but had a propensity to become so. So the operation at that time was intended as a pre-emptive action.

    The brown spots that recently appeared on her scar are diagnosed as highly dangerous and potentially fatal. I don't know what the name for the cancer is - when the surgeon said it could kill her we were more concerned with what action was to be taken.

    Yes, all this has hightened concerns about neck and shoulder aches and pains. But the pains were ongoing well before we arrived in England for the check-up on Kathy's face. So they definately are not psycho-sematic. The surgeon is concerned too, and that's why he has ordered the CT/PET scan for tomorrow.

    I'm reminded of an old business motto - "Test, test, and test again". After the coming op, I'm determined we will do just that. I now know the fear will never go away, but at least we will be active in managing it.

    I guess that you too, will have a forward plan for after your op. We can share that journey too!
    :-)

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  16. Just woke up after another restless night. Five am! We'll be off to the hospital in two and half hours...

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  17. No, no! I was not suggesting the pains were psychosomatic...just that every pain takes on an importance in one's mind and creates a fear that it might not have BC.

    I am thinking of you both right now. It's 2 am here...7 am there. I hope that you can at least get preliminary results right away. I will be watching this blog closely for news.

    You're right. The fear will never go away. One must be constantly vigilant and proactive. Remember my mantra...

    "I have cancer. Cancer does NOT have me."

    I have decided to be me, Chris, for this blog.

    XXXXX

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  18. And I'll be Ian!
    You'd chuckle if you could see me now. I'm not allowed near the CT/PET scan unit, so Kathy suggested I spend the time outside the hospital in the sunshine. Which I am, typing away on my laptop whilst listening to Radio 4.

    We won't get any immediate news after the scan. Kathy has a pre-op meeting next Wednesday, and hopefully we will know more then.

    When she comes out of the scan, she will be slightly radioactive! No visiting pregnant daughter until Sunday. Crikey! I always knew Kathy was red-hot!

    Best, best, bestest of good luck for tomorrow...

    XXXXX

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  19. You always uplift my spirits! Thank you. See you after the surgery. I may be on the good drugs and therefore a bit incoherent, though.

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  20. Hello Chris and Ian and Kathy and John

    The courage of you all shines through the ghastly array of symptoms you're suffering.

    I send pitifully inadequate wishes for joyous post-op post-test results.

    Please post news when you can

    Interloping Karen
    xxx

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  21. GOOD NEWS TODAY!

    I had the surgery this morning. The all-important sentinel lymph node biopsy was NEGATIVE. This is huge and indicates that the cancer had not escaped outside the immediate duct. My surgeon - not usually given to predicting anything - says he thinks he got all the lump. But we shall have to wait for the full path report of course.

    Now all my attention and good thoughts are focused on Kathy.

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  22. Aargh! i wrore a long post and it didn't get posted. here's the synopsis:

    Good News

    Sentinel lymph node biopsy NEGATIVE

    This is huge good news

    surgeon thinks he got everything out.

    Will know mre when get full path report

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  23. Yippee! Absolutely splendiferous news! I hope you are comfy as well as happy. Are you home yet? How do I send lots of flowers, chocs, and smiley cards?

    PS Your typing is great when you are dopey!
    :-))

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  24. Absolutely Joyous news Chris! Hope you're getting hugely spoiled, and that they let you out soon for a run round the park!


    Kathy, hope your op will be similarly successful -keep being strong and fun-filled, you and Ian

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  25. I was home two hours after surgery. It's an outpatient procedure here, but done at the hospital in a full operating room under general anesthetic. The sentinal lymph node (that's the first node any invasive cancer cells would meet) test is done at the beginning and tested straight away. This determines what happens next. A negaive result means no other lymph nodes are taken. Now hopefully the margins of the tumor were clear.

    I am in no pain but I am sure there will be some soreness and achiness as the healing progresses. I have the good drugs if necessary but I prefer to avoid anything stronger than standard over-the-counter meds if I can.

    All my thoughs are now focused on Kathy and you, Ian. You will be held close to my heart on Wednesday, and particulary on Friday.

    By the way, the dye used for the biopsy has made me pee a very pretty blue color!!

    XXXX

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  26. I have been thinking about you and Kathy all day. Whatever the MRI results, the actual surgery on her face will be traumatic simply because of where it is. No matter how much reassurance she receives, she is still going to be very frightened inside. That you will love her regardless goes without saying. Nevertheless, the psychological efffect of all this on her will be as difficult as anything else. My heart goes out to you both. Thank god you have each other.

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  27. Another nap...I have been napping all day. I guess the anasthetic takes time to get out of the system. It's now 11:35 pm and I am wide awake. Time for some Tylenol and then back to bed. But first some thoughts...

    It's bizarre. We happy few have been so happy-go-lucky and then Wham Bang, two of us are hit by the proverbial lightning bolt at the same time. Statistically, that's off the charts. But I have recently become friends with two ladies, sisters of a good friend, who were both diagnosed with breast cancer at the same time. One had DCIS with no positive receptors, had the lumpectomy and the "internal" 5-day radiation and is fine. The other had invasive cancer, mastectomy,chemo and full radiation followed by reeconstruction and is still in recovery. How strange, though that sisters, within weeks of each other, and living now hundreds of miles apart, they should both have been diagnosed with BC and with no family history to boot.

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  28. Chris - this is such good news! I can hardly believe that you are home so soon, in such good spirits, and so evidently back in tip-top writing form. What a huge relief! I’m delighted for you and for John, and indeed for all your family.

    I guess the most important thing for you right now is R & R – rest and recreation. And maybe this is also a good time for another “R” – reflection. That old saying about today being the first day of the rest of one’s life keeps coming into my mind. I wonder if you are thinking along the same lines, and will be setting your sails so that everything you’ve been through will have a new and positive effect on your life.

    Gosh, I’m amazed I just said that. I’ve just remembered how differently I reacted immediately after my operation in 1974. It wasn’t anything nearly as serious as what you’ve been through, but like you, I was lucky in that my job involved a huge amount of work from home, writing. So I just carried on as normal. One shrugs things off so easily when one is young and carefree.

    And Kathy is like that too. She shrugs things off. The operation two years ago left her face with a really nasty scar, and it didn’t affect her one bit. She just carried on as normal, and she’s the same now – totally matter-of-fact and realistic about the future.

    You ladies are heroins. Ouch! Must be all that talk about good and bad drugs! I mean heroines!!!
    :-)

    PS. Yes, it is bizarre. These coincidences do astonish me. Sometimes I think the gods are looking down, and mischievously pulling some invisible strings that connect us all together...

    I’ll be back later, to chat some more.

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  29. Kathy went off today at 6am with her elder daughter to a boot fair. I was asleep and woke up to find a “Post-It” note by the kettle. This is what it said:

    “Have a nice morning! Will be back 1 or 2 ish, I guess. Could you take a bacon joint out of the freezer (in bedroom) and put it in a bowl of cold water please. I did not want to wake you!
    Lots of love x x x x
    PS Chewy ?”


    PPS “Chewy” is our pet name for the calcium tablets that I’m supposed to take.

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  30. Kathy and CI - Good Luck tomorrow for more pre-op consultations, and Tons of it for the op on Friday.

    (How was the bacon joint)?


    Chris, how are you doing? Hope you're feeling a little revitalised after those naps and not too sore. best wishes to John,

    and love and strength and Best of Health to you all

    xx

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  31. Ahh Dolores! - the smoked bacon joint was unbelievably yummy, and next day there was enough left over for late brunch toasties, BLT style.

    The joint had been cooked in water, thyme, bayleaves, peppercorns, onion and carrots, with two cubes of Knorr chicken stock.

    Afterwards we added some remaining bits of bacon joint, potatoes and frozen peas to the stock, liquidised, and cooked up a superb Pea Soup. Scrumptious!

    Thanks for your good wishes! Will report back tomorrow!
    :-)

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  32. Chris - how are you feeling now?
    Hope you are comfy and feeling better and better!!!

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  33. I am feeling great! The tirerness (from the anesthetic, I think) has passed though I will take a nap if I feel like it. I love naps. It's quite remarkable that I had no pain and the discomfort (minor anyway) is virtually gone. Incision areas are nice and clean.

    You and Kathy are in my thoughts, as always.

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  34. Chris - that's such good news. In fact, it's brilliant news! :-)

    Yes, I'm really smiling for you. And I could have gone nap on you being a fellow napper.

    Alas, I've no news. Our surgeon couldn't attend our pre-op briefing today, so we will have to wait for the PET scan results. And the operation is on Friday.

    Keep fingers crossed...
    :-)

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  35. Fingers, toes, and anything else that it is possible to cross.

    Disappointing that you could not get the scan results before the surgery. Keep the faith. You are both in my heart.

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  36. Kathy and CI - Strength and Courage and Joyful Results to you tomorrow
    warmest wishes to you

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  37. In my thoughts and my heart. Bon chance, mes amis!

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  38. How are you Kathy and CI? Hope the op went smoothly and the post-op is not too uncomfy.

    Good luck for a gentle trip to perfect health now.

    love and warmest wishes, karen
    xx

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  39. Hello!

    Just a quickie - here's an email I sent my kids. Wer'e expecting a visitor now, so must rush, but will be back here 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 from 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 next 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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