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Staff - Stroke Support
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Everything posted by HostSue

  1. HostSue

    My heart is broken

    Thank you for posting this Kelli. We need to pray for all the people affected by this horrific event. And then keep praying for our own neighborhood that this may not be repeated among those we know and love and never want to lose. My heart goes out to all affected by this tragedy. I too have friends in New Zealand and this is another reminder that out of sight should not mean out of mind.
  2. HostSue

    February 2019

    Me too, prayers for your Dad and you too. Being on a list can be frustrating because they seem to move slowly but at least you have hope now. I am glad to hear you are enjoying chat. Keep up the good work.
  3. HostSue

    We're Still Hanging On

    Welcome back Sarah, as I said in my message I worry when people disappear from the Blog community. Glad you finally got the shower in too, much easier on your back and with summer coming a shower will be quicker and easier from now on.
  4. HostSue

    Hard decision time

    I was diagnosed with thyroid cancer this morning, my melanoma specialist Prof Saw will find me a throat specialist who can see me locally but who operates in one of the Sydney hospitals. Then the throat specialist will liaise with the neurosurgeon who wants to operate now on my brain aneurysm to see who gets to operate first. Not a good day. I wrote that to a few friends yesterday. I was in shock, I had gone to the doctor to discuss some options and he read out the biopsy report and there it was, the biopsy had shown a tumor in the node that had doubled in size. A bit of a surprise as the last report a year ago had said the nodes were all benign. But my mother had had her thyroid out in her fifties so I guess it is familial. Dash it all. Another operation to endure. I know it is my age, for some of us reaching 70 is one bridge too far. So it is a waiting game again. I will hear from the melanoma specialist again with the information on the throat specialist, he or she will get in touch with me, maybe get some more tests done and then book me in for an operation. It would be nice if I had a choice but I don't. Remember I had the other operations in order to see my grandkids grow up? I guess the same applies. The aneurysm in the brain operation is more serious of course, no laughing that one away. But an aneurysm is a small unexploded brain bomb and it is either get it tied off or live with the uncertainty of when or where it will detonate and blow. That is indeed a dilemma. So I will have to screw up my courage for that one. It is a pity somone else couldn't make the decision for me but I am still in my right mind so the decision is all mine. So how do I feel? Not confident that I have a future. I say that knowing the side effects of both operations, the downside of doing hospital chaplaincy. Some people come through operations so well, recovering fully, some people don't. Either way it is a long recovery and life will be different to what it is now. But that is the good news in what may be an end-of-life experience. I say that because one of my younger friends (58) from my stroke recovery group died this week after two massive bleeds, one on the left side of the brain one on the right side. Life is uncertain. Where does my Christian faith come into all of this? I don't know. I have always known life was uncertain, I was a caregiver for all those years and watched Ray have strokes, falls, fits and seizures. I saw how very brave he was and how he struggled back each time. I want to be as brave and determined as he was. I want to go into the operations knowing that things can go wrong but be brave enough to be able to take that chance. That is what living by faith is all about. So if I write a few down blogs or put comments on Facebook that don't sound like my normal cheerful self you will know why. The rain falls on the just and the unjust alike so don't feel sorry for me or worry about me. But do keep prayers and positive thoughts in your mind for me for the next couple of months as I deal with some of these awkward decisions. And help me to keep smiling when there is not a lot to smile about please.
  5. HostSue

    Hard decision time

    Thanks everyone, I am just going on every day in my usual way until a decision can be made. Lovely autumn weather now so all is right in my world.
  6. HostSue

    Hard decision time

    Thanks Tracy, got an appointment with a specialist in thyroid problems today for the 29th March, which is pretty quick. I hope that will give me a range of options including the operation. I like to have full knowledge of what is going to happen next, and some knowledge of ongoing care before I make a definite decision. Then when everything goes wrong at least I know what should be happening...lol.
  7. Please say a prayer for Pam, she has had a really bad time the last few months, with tremors in her hand that make typing problematic, swelling in her legs that has caused great pain and ulcerated and the medication for which has caused many unpleasant side effects. She has finally got some professional treatment and is slowly recovering but there are many other problems still to overcome. Those who know her in the Blog Community please send her a personal message as she feels very isolated right now.
  8. HostSue

    another AHA for my sunday

    So true ASHA, whatever you do if you do it in the right spirit is an offering up of something special, if you like it is a prayer. So much of life is selfish pursuit but whatever you do with pure motivation is bound to bring you joy. Keep on widening your mind to embrace the positive possibilities in life.
  9. HostSue

    Looking ahead but not too far

    Every now and again something jolts me back to reality, today it was the post on Facebook by Steve Mallory announcing that our friend Denny (Dennis Jeffries) had died. Denny and I talked frequently during my years when he was a chat host on Survivor Chat and I was chat host for Caregiver Chat. He was also my friend on Facebook. Like so many of my friends on Facebook and Strokenet we never got to meet in person but nonetheless we were friends. In this modern age this will be so for many of our friendships. My heartfelt condolences to his beloved wife Peg and their extended family and all those who knew him and valued his friendship. As I minister to the older church members in my own church and others in the organisations I belong to I am probably over familiar with death but never inured to it. I know each death robs us of a piece of our history and breaks down some of the bonds between us and others. All we can do is to remember those friends who have passed, remembering why we liked them, what we shared with them, remembering all that was good about that particular person and the ways in which the friendship enriched both our lives. We also need to remember those they left behind. I have just had my daughter and her family here for the weekend. Not her husband as he had injured his back trying to start a stubborn water pump so he stayed home for some bed rest. It was only a day's notice so it was unexpected but turned out to be a really fun time. My grandson Chris starts University this year so is a grown man now, his sister Naomi is 14 so quite a young lady so it was funny to see them playing with the toys Alice aged six had got out to play with. The Nintendo Wii got a bit of a workout and more so on the second night when Pamela and the three Adelaide cousins joined us. I guess that is when I realise my house is small when five teens and near teens are fighting to see who will be the challengers in the new Wii games. I do so enjoy having my grand children here, every time I see them I can see the changes in them. With Trevor and Alice's visit the first two weeks in January and then all the others last weekend I have been so blessed with the amount of time I have been able to spend with them. The Adelaide kids are going home in a week's time to start back at school, they are all doing well according to their abilities. I love them all and want the best to happen to them but have no illusions about them. Like Ray and I they will have their own struggle with life. They know Granma prays for them, but only two fully understand what that means. Summer has been very humid so it is out shopping etc in the morning and home in the afternoons. I have to keep hydrated and remember to take some time with the affected leg elevated. I have just lined up all the appointments and tests for the second week in February prior to seeing the melanoma specialist, with more tests before I see the neurosurgeon in March. I figure this is all for my good, remembering especially that this is prolonging my life so I can look forward to seeing my grandchildren grow up. I have felt the negative effects of wearing the body stocking toes to waist bevause of the humid weather but try to remember that too is to ensure I live as full a life as is possible. On the whole life is good and I have many blessings to count. I have a roof over my head, food on the table and many good people behind me challenging and supporting me. At my age I know that as long as we have love in our lives we are truly blessed.
  10. I have seen caregivers on here, myself among them, complain about lack of support, worry about loss of friends, decide in the end it is just them and their loved one and that is all that matters. He/she will be their BFF. In the next stage that is not enough. You are alone, and I mean alone. The family flock around for the funeral, the friends phone or send flowers or cards...a week goes by, family members may even stay a week or two. And then they are gone and you are in the silence. There is no-one there, you are alone.Coping with those sleepless nights and that cold and lonely feeling you will crymore than you have ever cried before, even though you thought you had mourned all through their illness those tears keep on coming. At this stage the lucky ones are those who still have a job to go back to, part-time can maybe build up to full-time. It must be hard going back, working with your sorrow still heavy on your hearts but having an income of some kind sure helps.There will still be some financial worries, sometimes health scares (because you have neglected your own health while looking after your loved one) and a lot of crying, more than you have ever cried before. After that slows down and you feel you are over that initial sadness starting to reach out to others will be the way to go forward. Why am I telling you this? I am urging you to keep life in perspective. Don't write people off because they can't handle the situation you are in. Keep in touch with as many people as you are able to regardless of whether they visit or not. Use the phone and the computer to stay in touch. Sooner or later you will again value the old friends, the ones who knew you is a teen, as a mature adult etc. These family and friends will be the keepers of your memories. Even in-laws have the photos of your kids, the little stories to tell about your beloved that you love to hear. When you are lost and alone and your loved one is still with you is nothing to how you feel after they are gone. So keep your friends, you will value them again in years to come. Sue.
  11. HostSue

    wow time has passed

    Your Dan certainly has a way of getting his message across. Nice to hear from you. Hope you are doing okay. For me it is one day at a time but I do enjoy life, always something happens to make me smile every day. Today it was two little girls sitting at the next table having a milkshake and blowing bubbles, typical four year olds. Hope you feel great when your Spring comes, I'm sure you will as you've had such a harsh winter
  12. Mark, I have made many friends due to Ray's strokes and our stroke recovery joirney together. When I posted this topic my grief was still fresh and painful but now going on for six years later what I felt then is still true. I deliberately reconnected with old friends and I am so glad I did. Now some of them are closer in heart than family. I am so grateful to my Strokenet family too particularly the Blog Community for always being there for me. Sorry you lost a good friend. I hope you make many more.
  13. HostSue

    Thankfully very few changes

    ASHA, going through the last year of uncertainty has not been easy for me. I felt as if my life was on the line. Then there were all the deaths through the year, I got sadder with each person that passed. Of course we do expect our older friends to get incapacitated, even to die but in reality this robs us of their support and guidance in our lives. Life can be sad when you are older. But I try not to dwell on that now but to enjoy each day.
  14. HostSue

    Thankfully very few changes

    I have a lot to be thankful for. My daughter Shirley took me to see the specialist in Sydney today. Luckily the heat of yesterday was replaced by drizzly rain but as usual that just made the traffic worse and so our two hour journey took half an hour longer. I know why I love my part of the coast so much, it is because I would much rather listen to the sound of waves rolling in to shore than the sound of squealing brakes and the horns of impatient drivers. Or park by the lake instead of trying to find a parking spot among the high rise city buildings. I have several tasks to do when I get there. I filled in the research paper I usually do on my post operation feelings which becomes part of a national survey, then I was interviewed by one of the associates which is part of their training and then I can see the Professor herself. It seems there is not any sign of further melanomas, no signs of secondaries. I do have some age related problems which the young doctor explained but these can be seen to one at a time. I don't have to see the specialist again for twelve months pending two more tests to come, one a biopsy and in March there is the brain scan and the visit to the neurosurgeon. I am so grateful for everyone's prayers. It was a tiring day but just to know I have passed the first year without a recurrence of the melanoma and no secondary sites is a great relief. I still will have some residual pain from nerves damaged during the operation but that is a small price to pay. I have been given another year and will make the most of it. My word for this year is enjoy and so far there have been few days I haven't enjoyed. My life may be shortened by this past year's troubles but it is still a good life. The week leading up to today was busy with all the tests but even then it was an interesting week. After one of the tests a woman friend picked me up and we went to lunch, a thoughtful gesture on her part. I am blessed with good friends. I don't have family close but Shirley is only and hour and a half away. I also had lunch out with my ex-daughter-in-law and caught up with her news. She is the mother of my grandchildren who live in Adelaide with my son and his new partner. I am lonely still, really no getting around that. I have plenty to keep me busy, I have friends locally I can connect with as I do, but when Ray died the centre went out of my world. But we widows and widowers just have to rebuild our lives and I have done that. Like any rebuild it includes things from the past as well as relationships which are more recent. The friends I have now are from different parts of my journey. It is inevitable that relationships change when your partner's dies and some friends drift away and new friends take their place. And of course at my age many older friends die. It was nice to have my daughter stay overnight and to and from Sydney we talk of so many things. She told me she now uses a lot of the sayings she heard from me and her father and her kids say: "where did that come from?" It is good to have a laugh together. I know she is busy and am glad she feels she can spend the time with me. It means a lot to me. Now it is onwards and upwards. No, I am not fixed or cured or guaranteed a future but for now I have a good feeling about the year ahead of me.
  15. HostSue

    Looking ahead but not too far

    Unfortunately the stockings are for life, lymphoedema never goes away. And after I pass this latest set of tests I still have two more years to go to be declared free of cancer. So I have to be patient.
  16. I haven't had a stroke, so I just blame my lapses on my advanced years. You will work it out in the end. I know you have a fine intelligent mind so it is just a case of retraining it. Though I guess you must be sick of people saying that to you.
  17. HostSue

    Delete Errors

    Kelli, you are a champion.
  18. HostSue

    Delete Errors

    Madade, I am Sue the blog moderator. I searched for your blog and could not find it. So either you have deleted it or it is still in draft form. As you have said you could write an entry in the form you have open. Remember to give it a title and click on publish if you want the rest of us to see it and be able to comment on it. Blogging is very therapeutic and gives you a whole new community of friends.
  19. ASHA, I have so many wise words in my head that came from reading your blogs, I have learned to go with the flow because that is what you have taught me to do. I am so thankful to you and others on here for standing alongside me in my journey with Ray and since his death on my widow walk. Have a great celebration on your stroke/ Valentine's Day celebration.
  20. ASHA you will enjoy being a chat host and getting to know a lot of truly wonderful people. I am a better and wiser person for being in contact with people who were willing to share painful experiences we could all benefit from. There is a pool of wisdom we can all draw from.
  21. HostSue

    Dennis’s service

    Kelli, thanks for the information, I like so many others wish I could be there. My thoughts will be with Peg and family.
  22. HostSue

    We need you !

    ASHA, you will be a great host.
  23. HostSue

    With deep sadness we lost a friend

    Kelli, many of us will mourn Denny as a personal friend. He and I had many chats as we did a chat around the same time. He often came as a "guest" to Caregiver Chat. I had a great admiration for Denny's dedication to his work with stroke survivors on Strokenet and his great love for his wife Peg and his family. Farewell old friend.
  24. HostSue

    I am sitting in a diaper.

    Pam, I don't know what to say apart from I hope it is temporary. I have not had this happen to me but Ray was in a diaper for several periods of time over the years and then for the last 15 months of his life. One of the reasons I went to the nursing home daily was to make sure he was clean and dry. The care is so much better if you have regular visitors, it seems to keep the staff on their toes. I wish I was close enough to drop in from time to time.
  25. Yes. One of the reasons I blog is to look back on how far I have come. I am looking at who I was and who I have become. It is like the growth rings on a tree reflecting the good years and the bad years. I can see that also in those other members of the blog community who have been blogging for a long time as you have ASHA. I can see that post traumatic growth in both of us.