Sausage Hands

My neutrophils are none existent as an unexpected result of the methotrexate.  I’ll keep this short, what do you mean thank goodness – as it’s really hard to type with these sore sausages that have temporarily taken the place of my fingers.  I still have my own skin but someone about five times bigger is borrowing it.  They’re not as sore as yesterday and some movement is easier but I can’t knit, if I felt compelled and B is having to help me in the shower.

I’m still in infectious diseases with a fridge which is good but would be a whole lot better if I could actually drink a whole bunch of COLLLLLLLLLLLLLLLD stuff.   After discussion of a morphine syringe driver yesterday one was prescribed – well a syringe driver that is but it was for anti-sickness only and I’ve never complained of it.  I can only think one/more of the nurses had said this but I’m not sick it’s just that if I attempt to drink something and my throat doesn’t like it I start to choke but just that bit comes back along my maybe some thick gloopy drool – just like at night.  A doc had prescribed the morphine driver on Monday (when I mostly slept) and then yesterday another one said that I’d not really made use of the meds on offer (may be because I’d slept) and I should give them a go and see how it went.  So I did and by the end of the day I managed a yoghurt, my tablets in mostly soluble form and even a little fizzy drink – very little and not without reaction.  I tried again today but the thing is that despite asking yesterday I had five mouthfuls of good stuff out of a possible seven and today seven out of a possible eleven and although I started off well, with an ice lolly for breakfast I found my nice slimy tinned peaches for supper were too rough – so next to nothing is getting down.  Needless to say I think I may be better off with the syringe driver for a bit.

One of the kidney docs called round this morning took one look at me and offered help with dialysis.  It took place within the hour and then he came back later and said due to the risk of infection I could have a couple of days off anyway.

And I’m so  parched I’m sure I could watch a Titanic documentary and think as they hit the sea ‘the jammy so and sos all that cold cold water and ice!’

98 responses to “Sausage Hands

  1. Dear Miss P… The ice lollies, ( pops we call them), sound good. I was always partial to the orange flavor with an occasional root beer flavored to change things up. There was also a chocolate one we knew as a ‘Fudgesicle’.

    My grand niece is 5 months old and has yet to allow her Myeloma Buddy out of her sight. She got the pink and green striped Buddy. My niece, the babies mom, told me she’s hand washed it twice but has to be sure it’s ready when the baby wakes up or she throws a fit. They’re arriving in Boston tonight from Arizona for two weeks in the cooler weather. I’ll see her tomorrow.

    I pray your thirst is eased by a cool draught that rests lightly on your tongue and soothes your aching throat. Or, by your favorite flavor lolly…

  2. Dear Paula.
    I am so glad B is there with you and I hope that you find some comfort in the small things he does for you and the time you are able to spend together. Blessings for you pretty lady…

  3. dear paula, i am so sorry for all the folderol with such difficulty swallowing and leaving you so parched. hopefully, there’s a mega supply of ice lollies, and the meds will kick in soon to allow for some further indulgence in drink – nothing boozy, just some ice water would probably really be nice, right?! it was really kind and helpful of that doc to help with the dialysis, and a good bonus he said you can skip a few days. the syringe driver (we call it a pump) is probably a good idea to prevent up-chucking (you call it being sick!) as that would surely be even more painful for your poor throat. i am BELIEVING that you will feel a bit better each day, the neutriphils will start gaining in numbers, and that the sausages deflate to teeny- tiny- knitting needle- capability thinness. you are a super-heronine of blog-posting-effort, for which all who are cheering you on are most grateful for. XO, karen

  4. Aligning with Karen that the medical team is finding effective solutions so you are indeed feeling better and those lazy neutriphils are getting to work and bringing all their friends with them, and everything else is going back to normal size, for the highest and best good of all concerned, so be it and so it is! Whooooooooo!

  5. Sioux McGee

    How on earth you manage to blog, keep your sense of humour and continue to battle with this damn disease with such admirable determination is truly remarkable and inspirational.I dearly hope the worst is over and your neutrophils (I am convinced they are lazy males!) start a jubillee torch relay of their own and bring crowds of their friends along to cheer your recovery. Tonnes of healing germ free love and gentle hugs to you mate.

  6. Hey missus – good to “hear your voice” on the blog! I do hope your hot dog fingers calm down a bit so you can get back to knitting therapy. Ever tried using your toes? No neither have I, but it could be fun to try! 😉
    Sending iceberg wishes your way from the frozen north! Be well!

  7. Hi Paula – once again you never cease to amaze with your upbeat attitude to everything that befalls. Do you remember one of the girls at AMPS who used to blame her typing errors on her sausage fingers? Now you know how she felt!! I’m sure she wasn’t going through the same as you though, just a clumsy whatsit! Can you make ice-cubes in your fridge? They may be quite good just to cool your mouth and slowly melt. Not quite as interesting as ice lollies, but the effect could be just as good. Hope things will improve over the next few days. The morphine should help and taking a break from dialysis will give you a breather. Love and stuff, Chris (Helen also sends love) xx

  8. When Mike had the same problem two years ago all he could cope with was ice lollies too especially as they said there was no such thing as IV painkillers. (We know better now of course.)

    Just as well Bud and Toni can’t visit or they might nibble on your sausages and render you unable to knit ever again.

  9. Keep the faith and hopefully something will ease you. I am praying for you!!!!

  10. I really hope things have cooled off for you, and that your sausage fingers have disappeared, making way for knitting! EZ often wakes up in the middle of the night parched as well…loves his sugar free popsicles and they usually do the trick. Praying for you to get well and return home!

  11. I really hope your fingers are doing better now! And that you will soon be able to have a cold drink!! Thinking of you!!

  12. dear paula, i know you hoped to blog as often as possible, so no blog might mean you haven’t felt well. so i just want you to know i am thinking of you. i hope you are feeling comfortable and have gotten past being parched and having sausage fingers, and are getting a good rest. i am sending you powerful vibes to make you comfortable, keeping you, B, and buddy close to my heart. XO, karen

  13. dear gill, this first message is for you. i read your post on sean’s blog and cannot thank you enough for giving us word about paula. i write this with tears streaming down my face to think of her having gone through such horrific pain and suffering such devastating side effects – not paula! she is too GOOD, she has fought so hard, and has been through so much. every one of her blog friends adores her, though most of us have never met her in person. but it doesn’t matter, because her wonderful, loving, kind, upbeat and wildly hilarious self has touched hearts and inspired people all over the world – and solid bonds of love and caring form from the goodness people like paula radiate towards others. once i heard her voice as she showed a video of one of buddy’s antics; it was so full of mirth and so sweet to hear. i treasured just those few moments, hearing her bubbly laugh. and there is no one that can make a person laugh out loud the way paula can. gill, please let bernard know i am thinking of him and buddy, and also know that i am thinking of you and all of paula’s friends and family, sending powerful vibes of strength and comfort. and i am so grateful for you letting us know that paula was much more comfortable and peaceful when you left her this evening. if you would be so kind, please give this next message to paula.

    dear paula, i am so very sorry for all you have been through these past weeks. i wish i could do something to make it better, but hope you get even some small comfort in knowing that you are surrounded by an awesome ocean of love and fond wishes for you to feel better. just rest – and make them give you GOOD DRUGs, dammit!!! i hope there is a lovely kalaidescope of you and b and buddy playing in that sweet, funny head of yours while you are dozing. remember buddy’s birthday letter? and how determined he was to make a nest in the clean wash basket that was only half his size? remember “hicky burpy”?! and how about how downright thrilled (and skilled!) buddy was helping you open your birthday presents.
    i will check in on you tomorrow – meanwhile have a sweet sleep, knowing that so many people, myself included, are thinking of you, paula, with much love. XXOO, karen

  14. Gill Kilgallon

    Hi Karen, I will take this message to Paula and read it to her. The palliative care team have tweaked the meds in the syringe driver and she seems far more comfortable. I will update u later. In the meantime thank you so much for caring. Gill

    • Hi Gill, I’m so sorry to hear Paula is where she is.

      We met and spoke in detail with Paula when she was in room 6 with mum. She is an amazing inspiration and I cannot believe what is happening.

      Mum is aware and would like you to tell Paula that she sends her her biggest hugs and lots of love and also so do we all.

      We also send all of her family our love xxx

  15. Dear Gill, I have posted your update from Sean’s blog over on my blog.
    Please give Paula our love, and take care of yourself and all the family.
    Best wishes,
    Roo and FL

  16. Linda (in Chicago)

    Paula- I am praying for you, B and all of your loved ones. Your humor and determination are an inspiration to me as I care for my husband with MM. LInda XXOO

  17. Gill Kilgallon

    Can’t believe it. The hospital are going to let us go home for Buddy and bring him down to Paula.

    • Oh Gill. I’m probably too late but tell Paula Toni sends her a lick too.

    • That is amazing! They are amazing! 😀

    • This is an act of inestimable kindness on their part… intending it goes well.

    • What a wonderfully kind thing for them to do. Paula has been such a special joy to me over the years and I’ve enjoyed her blog posts. She sent me a pair of Buddies while Vern was still with me – and a Bunny arrived this past New Year’s Eve. Such a kind heart, wonderful wit, talented knitter, important member of the MM community. My prayers are with all of us who love her ♥ Dianne

  18. Hi Paula-I am praying for you to be comfortable and at peace.

  19. Sean Murray

    Much love, peace, and comfort to you, Paula and B. You are in my prayers and daily thoughts. Thank you for reaching out and sharing yourself with me and others in our MM community. The pictures of your creations and your stories always make me smile. Hugs from across the pond. Sean M.

  20. Paula, I am working on my third baby sweater from the darling pattern you sent me a few months ago, and I’m puttting love and hope and hugs for you into every stitch. How great that Buddy can visit with you! All of us in your Blogosphere love you so much. Lovey

  21. Paula, I think about you often. I wish there was something I could do for you. Thanks for all the fun you’ve sent my way. You’ve been an inspiration to me! Beth

  22. Gill – Love and prayers coming to Paula from North Carolina. She is my hero!!

  23. Dear Paula and Bernard and Gill, and of course Buddy, you have been in my thoughts every day and yesterday especially as I had a feeling there had been a shift.
    It has been a good run, with plenty of chuckles along the way, and I know I am among a great number who are already missing the specialness that makes you, you, Paula. I will continue to do the Reiki to ease this transition and will include Bernard and Gill as well.
    My heart is heavy that the Green Door is opening for you but I feel quite certain that Sean is waiting just on the other side to take your hand.
    You have done many good works, Paula, and shared many kindnesses. I will not forget you.

  24. Paula, I am not often at a loss for words, but nothing that I can say can effectively translate how I feel right now. I could just kick B’s car, I am so angry. But, you are always so positive so I will try to keep this on a more positive note. You are AMAZING and I cannot even imagine how mind-blowingly amazing you are in person because you blow me away just over this computer. The only way I can feel close to you from here is to hold my buddy and send you strength and prayers through it, and I have been doing that. I hope you can feel the immense amount of love coming to you from around the world. And to B and B too. Peace to you, Paula. Hugs and much love from across the pond. xxxxxxxxxx

  25. So wonderful Buddy is going to be able to visit you Paula! Your tales of his antics have entertained all of us, along with your adorable pictures. May he bring you great joy and comfort, as our canine companions always do. We are clinging to our two precious Myeloma Doggie Buddies which you surprised us with, as we pray for you. As you know we believe in prayer and know the Good Shepherd is watching over you saying, ‘come to me all you who are weary and heavy laden, and I will give you rest.’ Rest now my friend and sweet dreams of long walks with Buddy and B, and knitting to your heart’s delight…love you very much!

  26. dear paula, i was so thrilled to hear that buddy got to come to visit you. i am sure that it was a wonderful reunion and that his tail-wagging was non-stop. i went back into some of the your blogs from the past and came upon one i have chuckled at, just remembering it from time to time. it was the one about B installing the new pet flap, then finding he had a part leftover, and your surmising it was probably some very important thing to keep the whole thing attached to the wall, then picturing buddy bounding down the stairs to the kitchen, wearing the pet flap about his waist. and here’s one about your darling B – when he decided it would be a waste to throw out four partial containers of old (really old, past expiration date old!) juices, so just condensced them all into one, then gave it to the nice lady who gave you the nice nightgown. so paula, you should know how much joy and laughter you sprinkle our days with, giving many a weary soul respite from dark and painful times and how much that means to so many people. my hope for you now is that all the comfort you have given so many of us is coming back to you many thousands-fold. i hope you can feel it. i love you, dear friend. gentle hugs and soft kisses to your sweet face, karen

  27. Blessings dearone- I will never forget your kindness to my Hamada(MM) with the making of the two beautiful white angels that gave him so much pleasure. Rest now, you have had a difficult journey and thank you for being the wonderfully sweet and talented lady you are. My heart is heavy…

  28. Gill Kilgallon

    Hi Everyone, Following a great deal of deliberation, we decided against taking Buddy to see Paula. We felt it would have taken an army to hold him back from jumping onto her bed and smothering her in kisses. He would have been confused why Paula wouldn’t speak and cuddle him. So reluctantly we made the decision. We were so grateful though that the ward would have done this for P.
    Paula continues to be comfortable and peaceful which after the last week is a blessing. Thank you all so much for your wonderful wishes you are sending Paula. Love Gill xx

    • May comfort and peace continue to bless dear Paula. My thoughts return to the final day with my husband, who also had MM & kidney failure, and the overwhelming peace that was present. Blessings to you and Bernard and Aunty Ann ♥

  29. Gill – thank you so much for the update. Continuing prayers for Paula, you, B, and the rest of the family. I stand in awe of Paula. It is a privilege to know her through her blog. Isn’t it amazing that her blog has “introduced” so many of us to each other, although we have never met in person? To quote Paula’s blog entry from March 20, 2010: ” …..I realised just how involved I’ve become in the well being of the people whose blogs I read regularly.” It is humbling and a blessing to be connected to Paula and all these other folks. Peace and comfort to Paula, B, you and all of Paula’s family and friends. With love ….

  30. Gill: Amid all that’s happening ……thanks for keeping us updated.
    Please know your sweet wife has touched so many hearts during her own painful journey.
    Keeping both of you in thought and prayer during these stressful days.

  31. Sorry….meant to say…..this sweet lady!!

  32. Sioux McGee

    Gill, thank you for keeping us updated about our dear friend Paula , please give her and Bernard all my love, I will continue to pray for you all. Paula you have inspired me in so many ways and I have spent many hPpy hours chuckling over your shenanigans via this blog. Thank you for your friendship and company on those long hours on 7Y. All my love and gentle hugs to you xxxxxx

  33. Hi Paula I know you can’t read this but am thinking of you always and like everyone else marvelling at your tremendous courage. It has been a long, tough road which you have dealt with magnificently. I am in awe of the way you dealt with everything that MM has thrown at you. But then, should have known that you would get to grips with everything appertaining (remember that word!!) to it. You have come to grips with the names of all the drugs and medical terms that most of us have never heard of, let alone say or spell! I’m in a bit of a quandary at the moment as part of me hopes that you will still be around when I come back from holiday (yes another one). I’m sure Pat feels the same as she is jetting off again next week too. But we know that if the time is right for you, you will have to go. Mrs Nunn says BAC is waiting for a PA. But keep him waiting a bit longer eh! I am hoping to come in again tomorrow, so till then. Lots of love from Chris T xx

  34. Hi Everyone – I hope nobody minds me posting this message, but I’m sure you would all want to know that, sadly, Paula lost her fight today at around 12.05p.m. Apparently she went peacefully. Bernard has done a sterling job keeping all of us in the loop, when I’m sure he has much better things to do. I’m sure I don’t have to tell you how very brave Paula was throughout this whole process. She may have only been small, but she had the courage of a colossus. She could make humour out of the most dire circumstances. Don’t know how she did it, but she had the admiration of everyone who knew her. I am sure she even amazed the staff at the Royal, who all seemed extremely fond of her. She probably caused some consternation among the consultants, as she seemed to know as much as them at times. I’m sorry I didn’t get to see her one last time, as we (Pat & I) were intending to go in tomorrow, but not to be, but it was obviously the time for her to leave us. She leaves behind many many people whose lives she has touched for the better and I can only say, “Thanks, Paula” it was great knowing you. Just sorry it was for such a short time. Sorry, will have to go now, as can’t see to type through the tears. I hope Paula is at peace now and with her loved ones once more. xx

  35. Night and Godbless Paula, at peace and free from pain. It has been an honour and a privilege to have met you. My thoughts and prayers are with you, Bernard , Aunty Ann and of course Buddy. Xxxxxxx

  36. She will be deeply missed…

  37. Rest in peace, sweet Paula. You made a difference in this world and will be missed. My thoughts and prayers are with all who loved her ♥

  38. So very sad.
    All good wishes to family and friends.
    Roo and FL

  39. Heaven is an even happier place today with Paula’s entry. We will miss you so much, sweet, funny Paula. Lovey

  40. Wonderful, wonderful Paula – I’m sure you’re already keeping the angels amused! Will miss your lovely words, but what a difference they made in this world! Peace, comfort and blessings to your family and friends.

  41. oh, paula, your beautiful spirit is free! while the tears flow and my heart feels heavy with loss, i know you are still there – just a thought away. i am picturing your journey to the other side, actually getting to SEE and be embraced by the legions of souls you have touched with your kindness, your sweet smile, the inexhaustible love you lavished on others, and the laughter your incredible wit brought to us all that was such a welcomed respite to the cares and woes of everyday life and the struggles with the beast of MM. so go, paula, fly…fly away from all the pain, see the moon and the stars and watch over bernard and buddy and all whom you love. and know i will never forget you.

  42. 😦 xx Bye Bye and thank you for being a true friend xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

  43. Too upset for words. I never met Paula but she felt like a friend. I originally came across her blog through her knitting and crochet. Last year she very kindly offered her support when my brother-in-law was diagnosed with myeloma just before his 40th birthday and that support helped us all through a difficult time.

    She was very brave and so funny despite everything that was happening to her. May she rest in peace. Our thoughts are with B and her family.

  44. on the eve of paula’s funeral, to her family and dear friends, i wish you all the grace of paula’s love gently falling upon your hearts as a balm to soothe you as you say good bye. i will think of her, and read posts she wrote that touched so many of us throughout her journey, and made us laugh out loud. paula was a GIFT, personified, her humor and unique perspective so endearing that she made friends with her words that imprinted her on our memory and our hearts – across oceans, and deserts, and mountains – and made us fall in love with her. love – the gift that keeps on giving, and that nothing can ever take away.

  45. Karen, what a lovely message and so true. Have just returned from Paula’s funeral (it still seems surreal to say that). I’m sure she would have been truly amazed at the number of people there, from every part of her life. She deserved all the praise and good things that were said about her. It was a very sad occasion, but it can only be eased by the fact that Paula will suffer no more and is at rest now. I’m sure everyone prays that Bernard will find strength to carry on without the love of his life. I’m sure Buddy will be a true companion and give him a purpose. This week in the UK is actually Myeloma Awareness Week, which is quite ironic. I think Paula did quite a considerable amount to make us all aware of MM. Hopefully more people in the future will benefit from research that is ongoing and will be able to live longer lives than our lovely Paula did. Although she did pack a lot into that relatively short life.

    • Thanks, Chris T, for posting about the funeral event. Many of us in the US will be making a donation to the IMF in her name. And also intending for Bernard to have family and friends to help him grieve for his beloved… a sad time in truth.

  46. Thank you Chris T. for sharing about Paula’s funeral. She certainly has been heavy on our hearts today, as is Bernard. So many loved her as she made others so aware of what life with MM was all about. And in the midst of it all, she blessed us with her wit and talent. We will forever treasure our Myeloma Buddies as we remember her. Much love sent your way. I posted a collage of her Buddies on our blog today that many might see the joy they brought all around the world: http://www.walkingwithbigez.blogspot.com.

  47. RIP my friend Paula… please look down on us and know we all felt deep love for you… I have been away from the bloggin world with my own ails… I am sadden to hear this news.,.. for B I send hugs and healing for you…..

  48. oh, paula,

    i come back to your blog often just to pick some of your words to read to comfort me, make me laugh, and then send thoughts of missing you terribly. i think of your darlings, bernard and buddy, and send them love and wishes for comfort. i BELIEVE you are there and know how much you are loved; i picture you in a state of complete joy, and imagine you are still encountering the spirits of the people who were touched so profoundly by you – those you made smile and laugh, those whom you comforted and reassured, those whose lives were made a little brighter and a whole lot more hopeful, those who were inspired by your perspective on life’s ups and downs. you knew that every smile and kind word and generous gesture of help COUNTED, and now i am sure you are in the embrace of countless numbers of those who were lucky enough to receive them.

    i echo deedee’s plea – look down on us and know we all felt deep love for you. and we still do…

    love always,

    karen

  49. dear paula,

    it’s me again…this time with a special request. “what?”, you say (and i do hear that sly chuckle – just read on, okay?). i’ve learned that a dear friend, one to both you and me – has some potentialy not so good something that may be amiss with someone our dear friend is close to. cryptic, i know, but i promised i would be discreet. besides, when you were here, your blog brought people all over the world such comfort, hope, healing, and love – so, now you’re there – but i’m sure – still here, close by, each time we think of you. i think of all that amazing ability you had even while being tethered on this crazy earth-bound journey, and imagine how much MORE ability you have now, being free, but still being YOU. but i digress. i’ve really come to you to ask that you facilitate safe passage through that potentialy not so good something that may be amiss, that every grace and blessing be afforded to our friend’s loved one to keep them safe and well. i am saying their name, just as i am saying yours, so if you hear me, i have no doubt you will know who it is. thank you, paula, for listening, and for any help you can give.

    with sincere love and gratitude,

    me…again

  50. It’s been over four months since our beloved Paula left us, and yesterday when I was in a knit shop, I thought about her and Bernard and Buddy and I don’t suppose anyone ever comes back here now, but if they do, I just wanted them to know Paula is not forgotten, and neither are they… intending the best, as ever.

  51. Your message is perfect, Sandy. I have not forgotten Paula, Bernard or Buddy either.

  52. Karen, Sandy, Dianne: I also come back to Paula’s blog often to read some of her entries. It lifts my heart and reminds me of the wonderful blessing she was to me and many others. I continue to pray for Bernard, Gill, Auntie Ann and the rest of the family. And of course, Buddy!

  53. dear lovethebeach,

    how lovely that you added your voice to paula’s comment section again. it is such a comfort to see others who still feel drawn to the place where so much of her beautiful self resided; her wisdom, her hope, her chronicle of ups and downs, tears, frustrations, fears, her unique sense of humor, her big, caring heart, and her love for her beloved bernard, buddy, and the rest of her family. didn’t she have the most wonderful way of expressing it all? i wonder if her family knows just how much we continue to think of her with such love and admiration, and how dreadfully we miss her. i just feel so grateful her blog is still here, her words live on, and we who still mourn losing her can still gather in this one spot to share our memories. my love to all of you who continue to feel her presence in your lives.

  54. Dear Paula, just stopped by again to read through your words and thought I’d drop you a message. I hope you’re keeping a close eye on Bernard, Buddy and Aunty Ann , they must find each day without you so hard.
    Well my dear for such a petite girl you have left a Huge hole in so many lives and inspired so many of us to be stronger, positive,creative and through your words smile and chuckle.
    Thank you for being you, night and Godbless
    Xxxxxx

  55. dear paula,

    here in the US we celebrate thanksgiving this thursday. i want you to know how very thankful i am to have met you through your blog, and then become on-line friends. i count you as one of the great blessings in my life, and continue to be inspired, humbled and amazed by your legacy of words, humor, and the love you always expressed for bernard, buddy and all your family. i will think of them, as i do of you, BELIEVING you are watching over them and that they feel the love i know you surround them with.

    i miss you, paula; thanks for the memories…

    love, XOXO,

    karen, TC

  56. Karen – to that I say …. amen.

  57. dear love the beach,

    thank you! isn’t it co comforting to know that paula’s site is still up? i feel as though it’s a connection with her that we can SEE and re-visit posts that are sooooo paula. though it’s nearly 5 months since she’s gone, she is still missed very much. i still have periods of feeling really, really mad that she had to die. i guess that’s a part of the grieving process. mostly, i feel very grateful to have had her for the time we did.

  58. Paula – just thinking of you ……

  59. dear paula,

    i was reading through your posts of this time last year. you were so happy and excited to get to come home, to be with bernard and buddy. so bittersweet to read in retrospect…i expect you will be taking extra care to help see them through the holidays this year. and so will we all, those who know how much you love them – sending powerful vibes to enable them to FEEL the embrace of love you constantly surround them with. i will be BELIEVING that they WILL feel those embraces, knowing that love never dies.

    to lovethebeach – i send wishes for a happy holiday to you and your loved ones. i bet paula is smiling, maybe even laughing with joy that you and so many others remember her.

  60. Happy new year to you Karen, and all the other wonderful people who come back to this site to remember and honor Paula.

  61. sending love and best wishes for a happy new year to you, too, lovethebeach. isn’t it amazing that we can still come here – what a comfort for us all. if paula’s loved ones read this, please know that we are thinking of you and send waves and waves of love, and that paula is never forgotten.

  62. dear paula,
    in the last few months i’ve become a fan of a young womans blog about her diagnosis/treatment for MM. she is only in her late 20’s, and has had many challenges with pain, fractures, and the nearly total loss of the life a person her age should be living. she lives in the UK, she is a talented writer and never hesitates to describe the most raw details of what is affecting her. she is a wordsmith, and like you, finds humor is the most unlikely situations. reading her words is like a schizophrenic ride through longing, laughter,the reality of an incurable disease, profoundly expressed dreams for her future, the agony of her pain, the joy she experiences with the few times she can have fun with friends and family, heartbreaking lonliness, altristic acts and thoughts for the suffering of others, the roller coaster of hope that often crashes from the highest of highs and the fear of dying.

    i am reaching out to you, paula, to ask that you watch over her over the next several weeks she is off the treatment that was not nearly effective as was hoped for, as she is prepared for an allo transplant. you were a spectacular earth angel as you walked among us; and i believe an even more spectacular one now – still walking among us, but so much more enlightened, your sweet self filled with unbounded love and compassion.

    i feel i must honor this most exceptional young woman with keeping her identity undisclosed. i do know, though, that several mutual friends will recognize her, and that’s okay. i know they, too, keep her close to their hearts. as for you, darling girl, well…you already know of whom i speak, don’t you.

    as you must know, many of us miss you terribly, think of you often, and go back to read portions of your blog that inspire and touch us. we hold the best wishes for your loved ones, that they will find comfort even as they continue to grieve losing you, and that they FEEL your presence in their lives along with the huge love you constantly surround them with.

    thank you for listening, paula. i see you in the opal white of the moon, the brilliance of the stars, the gentle ripples in the pond where we walk our sadie. i still hear your lovely, delighted laugh when you played with buddy, and read the wry humor you found in so many moments that were crazy and topsy-turvy , that made/make me laugh out loud,

    love, XOXO,

    karen

    i

  63. Lorna – thanks for the reminder about Paula’s birthday. I check this entry every few days and was happy to see your post. Best birthday wishes wonderful Paula.

  64. yes, lorna – thank you. i guess we all bless the day that our lovely paula was born. hello, lovethebeach, hope all is well with you.

    love, XOXO
    karen, TC

  65. Someone sent me a FB message saying it was from you… I looked and even though I knew it was not, I guess I was hoping that if anyone could figger out how to message from Beyond, it would be you. Soon it will be a year since you left us, and I have read several books about Afterlife, and wish so much you could report back because I know, in your inimitable style, at the very least you would make us laugh a little. How I miss your wry humor. It must be so hard for your two B’s and I hope that Gil or someone will pass on to your Beloved that there are many of us who pray for his peace and hope it is some comfort to him to know that there are those who care. As KS said, I see you in the stars, the cosmos you have joined and if prayers are like ‘gold stars’ on your report card, here’s another one.

    • Sandy – so nice to check Paula’s blog and see your lovely note. We all miss her so! I do hope that Bernard’s grief is being replaced by sweet memories of wonderful funny Paula……..

  66. dear sandy and lovethebeach,

    wouldn’t paula just love that we come back to her site, that we cherish all that she has been to us, and that we can share about how much she means to us. it is a great comfort to read what both of you have written. i. too, hold hope in my heart for bernard and buddy and gil and all her family that they will read and feel the thoughts and prayers that go out to them. i picture our beautiful paula softly placing those thoughts and prayers, lit with the light of compassion and love that never dies right into their hearts.

    love, XOXO,

    karen, TC

  67. though i never met her in person, her wit, sense of humour and unique perspective reached all the way over here in canada. thank you paula. i feel lucky that our paths crossed.

  68. dear paula,

    my darling hugh passed away on sunday, may 5th; ironic that he died while still in remission from MM. paula, hugh read many of these posts, so he knew that the many times i cried when grieving after you died that i needed consoling, and i needed to cry. he knew how big and how terrible the loss of you felt and that there were good reasons i was so lonely for you. i am hoping the two of you have met, and that hugh felt your welcome, and has gotten to see what a magnificent soul you are. i picture him looking for you to tell you just what your sense of compassion, hope and incredible wit meant to me, how you inspired me, how many times you made me laugh out loud and how much i miss you. please look for him paula, and help welcome him to where you are, when you find him, tell him for me that i am finding my way by the bright light of love we lit and lived by, tell him i feel his presence near at all times, and that i want him to be happy, whole and free. tell him i love him bigger than the universe, and say that i ask him to keep visiting our sadie-girl, who lays by the front door waiting for him to come home. he needs to spend some time with her and let her know he is with her, and will probably have to have a talk with her from time to time becasue she is a puppy still, at heart, and tends to forget things. but she does no forget you. – ever, i love you, hugh, and will believe that you and paula will meet up, sharing silly jokes, and keeping watch over us all.

    love, XOXOXOXOXOXOX

    KAREN

  69. Karen – I am so sorry to hear this news. You are in my prayers my friend.

  70. dear lovethebeach,

    thank you so much for reaching out to me this way. thank you for your prayers, too. i know they will help me get through these early days and weeks of such raw grieving for my beloved hugh. and thank you for being my friend. i feel your caring, and even though we we have never met in person, i picture your beautiful and compassionate self aglow with love and empathy. xo, karen

  71. I’m so sorry, Karen. I’ve imagined my Vern greeting our sweet Paula when she arrived and now believe they were there to wrap their arms around your dear Hugh. I will keep you in my prayers during these difficult days.

  72. Karen – just checking in on you. Just to let you know that I am thinking of you. (Paula – thank you for still providing a place for many of us to “meet”! We do miss you so.)

  73. Karen – when you’re ready … I invite you to join me in Widowed Village, an online peer support community. Only widows and widowers. All different ages, losses, experiences. But it is so helpful to find others who truly understand how difficult it is to lose the love of your life and to find your way alone. http://www.widowedvillage.org

  74. dear lovethebeach, and dear dianne,

    oh, how lovely to see your messages, such a comfort to know you are thinking of me. and i thank you, too, dear paula for still letting us have a safe place to land, here on you site. and i still miss you like crazy.

    this has been a very difficult week, sorting throught all the “business” of death. i had a respite from it all, and then the real, raw grieving began. i did not realize one’s eyes could manufacture so many tears, and at times i have truly felt such profound emptiness. but coming to places like this is a way to turn outside of myself, to be nourished and comforted, and feel the richness of gratitude. it helps to displace some of the lonliness and sorrow when that light of thankfulness is let back in.

    lovethebeach, you continue to amaze me with your kindness. how thoughtful and caring you are to reach out to me, to check on how i am doing.

    dianne, thank you for your sweet message of symathy, ans for the invitation to join widowed village. i know that in due time it will be a very welcomed suppport. right now, it’s so very hard to just take in the reality that i am a widow. i know you understand how i feel from your own very painful loss of your dear vern. and from reading your wonderful blog, i am so happy for you that you are doing so well, with so much love and support from your readers, as well as from WV.

    as you know i have breast cancer. about a year ago i ventured into the BC blogosphere, not to blog, but to claim my stock-in-trade as TC, the commenter. with us both having cancer, a blog of my own was not possible – chemobrain simply would not allow me to write the retrospective part of our story, and we were just too overwhelmed with our dual cancer calendars, overflowing with – well, you can just imagine. anyway, i found my self commenting on quite a few wonderful blogs and felt a purpose in lending support, giving validation, commiserating, offering compassion, listening, and learning so much, as well as sharing aspect’s of hugh’s and my story that might help others who were struggling with things we were all too familiar with. i was welcomed with such amazing responses to my comments, and have made many wonderful, close bonds of friendship with other women (and men) with BC.

    one blogger – her blog is “chemo brain…in the fog…” and i really deeply connected. we also corresponded by e-mail and became dear friends. i wrote an e-mail to her when i found hugh unresponsive in our bed, and he was rushed to the cardiac intensive care unit. annemarie, author of the above named blog, devoted her entire blog on may 3rd to ask dear friends and readers to send messsages of support to her comment space, and allowed me to chronicle day by day what was happening with hugh in that same space. after hugh died, she posted a tribute to him, and published his obituary. messages continue to come in to me, and she has provided links to other BC blogs that have payed tribute to both hugh and me.

    when i tip-toed into the BC blogosphere last september, taking up my little cyber pen to offer my thoughts, and learn more about BC issues – how could i have imagined that my beloved hugh would die such a sudden death while he was in CR (complete response, remmission) from his cancer? and how could i have ever envisioned that hundreds of people from around the world would rush to my aide in my very darkest of hours? cyber space – strangely beautiful, and peopled with the most caring, compassionate, and loving souls – just like you, lovethebeach, and just like you, dianne. i can never adequately articulate how touched and how grateful and how comforted you have made me feel.

    much love to you both, and to dear paula and her family,

    karen, TC

  75. Paula – Excuse me for using your space but I’m betting you don’t mind. I just want to check on Karen. Karen – are you doing OK??

  76. dear love the beach,

    i’m betting the same thing about paula not minding if we use her space. it’s really something, isn’t it – paula’s legacy of love lives on. her blog has become sacred ground, and i guess that is very fitting.

    thank you LTB, for checking on me. the days of “firsts” without hugh are fraught with so much emotion and so many memories. after 46 years with that wonderful man, i am pretty sure that those occassions will happen for the rest of my life. people tell me that, in time, the memories will be a comfort, and i am sure that is true. so when i get pulled under a huge and stormy wave of grief, i try to realize that it’s because what we had together was so good. but new grief, the raw, wanting-to-fall-down-on-the-floor longing for him still has it’s way with me, and i must just go with it. it will not be denied it’s due of pain, and tears and exhaustion.

    i put my big girls’ pants on several times in the last 2 weeks, though – troubleshooting insurance and banking issues – with success. so that all makes me feel not so vulnerabe, and much more capable. i also was brave enough to listen to our ipod once again, filled with songs we dedicated to each other. now when i hear the ones that i picked out from me to him, i just hear him sending the messages of love back to me. and tonight i had a little dinner at our house with 2 couples we have been very close to. by mid afternoon, i felt panicky, wanted to call them and cancel, but then had a good cry, and carried on with the plans. we had a nice time, and our friends were a great comfort – we laughed and ate good food and had a toast to hugh with our first glass of wine.

    i thank you so much for your kind message. i wish i knew more about you so it wouldn’t be all me, me, me. how are you doing? are you in the UK? you don’t have to answer those questions – i completely respect your privacy. just know that i am grateful to you for your thoughtfulness and caring. love, XOXO, karen

  77. Hi Karen – not in the UK. :). I just sent my contact info to you via AnneMarie.

  78. dear paula,

    this is the date that sent so many of us reeling with finding you had slipped the bonds of this life, and had been released from your hard strugggle with MM, and though it was natural that we would feel relieved that you no longer suffered such pain and agony in your last days, it was also natural that all across the globe, there would be an out-pouring of tears and hearts that were broken with the loss of our sweet, funny, and thoroughly loving friend. as we grieved deeply for our loss, we also have kept your darling bernard, buddy, friends and family close to our hearts, hoping and praying they would still feel your presence, and that they were even just a little bit comforted to know that we love them, too. i think you would be pleased as punch that some of us have made wonderful connections with one another just through our mutual love for you paula. so please know that you have left you mark on so many hearts, ones that reach out to tell our stories, and give and receive the gifts of compassion, consolation, and love. we should all live as you did and leave this earth a much better place than we found it. rest in peace and the knowledge that by sharing your story, you have helped so many of us to appreciate all of the gifts of ordinary days; it is a rich and abiding legacy you have left us with, and i and many others thank you for that.

    much love to paula and all whom she holds dear, bernard, buddy, her family and friends, XOXOXOXO,

    karen

  79. Couldn’t let the day go by without posting a note on Paula’s blog. Continued payers for Bernard, Buddy, and Paula’s family and friends. Wonderful, wonderful Paula…. you are missed.

  80. As I sat here this evening, reading various blogs, I thought “there will never be anyone like you Paula”. I miss you.

  81. Happy birthday Bernard. A bit late in the day I know. x x x

    Love Lorna Mike and Toni

  82. dear Bernard,

    a very HAPPY BIRTHDAY to you.

    much love and light,

    Karen xoxo

  83. I know these two years have marked many changes for Bernard, Buddy and all of us who have missed dear, sweet, irreverent and wonderful Paula. Just wanted to let you know, dear friend, how much you still are missed.

  84. dear Paula,

    I can’t believe you have been gone for two years. thanks to our dear Sandy for reaching out to tell you what all of us who love you are feeling, that we miss you more than words could say. I still go back and read some of your posts – so many poignant and funny and profound words that bring back memories of both laughter and deep sorrow. I hope Bernard, Buddy, and all your dear family and friends will be even a little comforted to know that we haven’t forgotten you, and that we keep them held close to our hearts.

    love always,

    Karen

  85. I know you must be on to other things, dear Paula, and I have had no sense of your channeled witticisms during this past year so it must be so. Nevertheless, on this day I wanted to acknowledge what an impact you made on my life and how grateful I was to have known you. Maybe you are one of the angels watching over those twins you were going to sew/knit something for… I hope so. Loving you in the ether…

  86. Hi Paula, just stopping by to wish you were here to help me with Mike and his second SCT. I can only imagine the wicked things you would have said about our hair raising fund raising. We still really miss you, especially at Christmas. x x x x

  87. On this Memorial Day, May 29, 2017, I just wanted to leave a little note for Bernard and Paula’s family that I was remembering her… for me this is not just a day to think about “those who fought in wars” but those who were on the front lines of MM, too.

    And now another of this curious club is being challenged, your pal Mike, so if you can have any influence on the Other Side, I am sure they both will appreciate the assistance. You are well thought of, dear Paula.

  88. haven’t been here in quite a while but I’m glad to see that Paula’s blog is still up. glad I can still come to this place to remember Paula and all the lovely people who followed her blog. special love to Lorna and Mike.

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