swilkinson

Staff - Stroke Support
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Everything posted by swilkinson

  1. I had five days in hospital and got home late Friday afternoon. It was so good to be home. I went to hospital because I got cellulitis in my melanoma affected leg. It was my own fault, I scratched an insect bite and set up a bacterial reaction. Without the protection of lymph nodes to fight off the infection spread and on Monday I realised I was in trouble. I consulted my doctor and then rang the Melanoma clinic and following their advice finished up in the local hospital. Needless to say that was the right solution as I needed intravenous antibiotics urgently. Being in hospital again reminded me how fragile life is. I was in a four bed room and each lady had a story to tell, some sad, some of hard times, all linked to a series of health problems. With daily turnover I probably spoke to ten women in all. I am always astounded that we assume we are all so different from others until we are sick and then suddenly find we have much in common. I hate hospital, with its bad food, almost impossible sleeping conditions and insufficient staff but that was the place I needed to be to get well. I am so happy to be home though and it is great to sleep in my own bed again. It was Mother's Day today. I did the usual picking up an older lady for church, then after I had dropped her off I came straight home. I am still not at full strength so didn't want to risk shopping today. About 1 pm Shirley and family arrived bringing chicken and salads for lunch. It was so good to be together again. They only stayed a few hours but it was great to catch upon the grandkids news and what Craig is doing in his job. Shirley visited me in hospital last Tuesday so I knew what she is doing. I loved having them but was tired when they left to go home. A week spent mostly in bed has zapped my strength so now I need to build myself a routine with more walking and spend some time doing exercises on the Wii. Not allowed to do anything strenuous until all is back to normal, or what passes for normal these days. I am feeling my age now, sort of lost my bounce. I am not complaining, I am as well as I can be but I have to make an effort to get stronger before I have the next operation. And that is going to take an effort on my part. The garden looks well after the rain and I need to trim a few of the smaller shrubs. It is good to be able to get out into the sun for a while now it is cooler. I really miss the long days of daylight saving, it seems that it is almost dark by 5pm now. The garden looks good as my lawn mowing man was here last week. It is just as well I have someone reliable to do it. It is better to think about the cost as just a normal budget item. And appreciate a job well done. Apart from that we are in the middle of the lead up to our Federal elections, polling next weekend so all politics on TV and social media. I think I will read and watch old movies for the week. I can always find something to do. As soon as I feel strong enough I will return to my usual routine, weather permitting of course. Looking forward to that.
  2. Ray used to do the same, just lose control of his body. Often in the bathroom but sometimes on the way which was a much bigger cleanup. I cleaned him up first and got him back to bed before I had my cry, more out of exhaustion than sadness. Once we had the twin beds it made life so much easier when an "accident"happened as I could roll him onto mine while I fixed up his. Well done in picking him up while retaining his dignity.
  3. Your son sounds like he will grow up to be a fine man. Maybe his wife should be the one to get him organized in the future. Getting little jobs done around the house by one of my sons always makes me a happy mother too. Happy Mother's Day.
  4. swilkinson

    Back home

    Pam, whatever it takes to get you better. Sleep apnea is so common in folks with breathing problems so I hope your new routine helps. You certainly went through a lot in April! I know you must feel terribly alone sometimes. But although I am over the other side of the world I want you to remember I am thinking of you, and hoping things will get better for you.
  5. swilkinson

    Suffering

    Pam, I just had five days in hospital with cellulitis, got it in my melanoma affected leg. It was very painful. I hate being in hospital but in order to get the right antibiotics I had to stay there. I hope things work out better for you soon. I wish you pain free days.
  6. Tracy, I am more than happy to read your blog. Good news, bad news it is all your reality. So... congratulations on your good news,the ability to live independently will be great, you and Kitty will love it. Thankfully you will still have both your parents as back ups, and that gives you a safety net. Hope the panic attacks go back to manageable once you settle into your own place. You will be able to color your world the way you want to at last.
  7. Thanks Heather, not something I am looking forward to but we do what we have to do.
  8. Just discovered something new, a surgeon asks for you to be put on either a 30 day or a 90 day waiting list for an operation in a public hospital. It will be interesting to find out which one I'm put on for the aneurysm. They are sending me a heap of paperwork which I should get one day next week. I made the decision to have the brain aneurysm operation because everyone I spoke to seems to have someone who didn't have the operation and had the stroke. I can't plan ahead now but have always lived day by day so will manage okay.
  9. As long as one of the feelings is happy, that is what counts.
  10. It is always hard to wave goodbye to Trevor and Alice. They live so far away and with all my medical woes I won't be going out to Broken Hill for a while. But we had a good week, no big dramas with Alice settling in. Not as much time together as usual as they went down to Sydney for two full days, one to Taronga Zoo and one to the Royal Easter Show where they met up with the cousins, Tori, Alex and Oliver. Alice is very close to Oliver who treats her as his little sister so she follows him around as much as she can. We had a visit from Shirley, Chris and Naomi on Monday, Shirley said it was great as Alice really talked to her this time. We had lunch out and the day just flew by. Chris is doing Biomedical Science at University now. He wants to do research. When he was much younger after Ray had had yet another stroke he asked me: " Granma why can't the doctors fix Pa?" I told him that we don't know all there is to know about stroke and he said: "When I grow up I will find out." So maybe that is still in his subconscious mind. No news on when I am having either operation. 2 - 3 months seems to be the normal waiting time for a hospital bed now. I am not worried as I am sure the surgery will be done eventually. I find that just going on with my regular routine is the best way for me to keep busy and not fuss. I got used to the one-day-at-a-time routine when I was a caregiver for Ray so it is not new to me. Unfortunately it does mean I can't do any forward planning but that is not new either. The summer heat has gone now, we still have the occasional hot and humid day but they are not the average day. The days are quite pleasant now. I am in the middle of repotting plants and cleaning the gardens up for winter. I know that with either operation I won't be able to do heavy lifting so I will do as much as I can now. I am enjoying being outside more although now we are off daylight saving the days seem much shorter. I am always glad when the humidity drops, it makes life much more enjoyable for me. I have been to a couple of funerals in the past month. It is because all of the groups I belong to have members much older than me. I don't think that is a bad thing as some of them have mentored me over the years. Some of them were my best supporters when I was looking after Ray. I have been in my Lions Club for twenty years in November so have watched the members I started with get older and frailer, but that is life isn't it? I guess the younger members think the same about me. I guess some of you have noticed I am no longer Hostsue, I am now swilkinson. I am still officially the Blog Moderator and still occasionally comment on posts so I am still involved. I still have a lot of people from this site on my Facebook page so I am still interested in what is going on in the lives of the wonderful friends I have made here. And I still pray for those who ask for prayer. Thanks to all who do the same for me.
  11. George, great to have an update from you. I am having some health woes too but hope that once I am over them I will go back to leading a more interesting life. It is wonderful you are finding Lesley's Mum a good addition to the household, I am sure she values her time with you and Lesley too.
  12. Thank you for your kind words Pam. I am just waiting now for the three specialists to work out what the most necessary operation is and where it needs to be done. Waiting is hard but I simply fill in the days with my usual routine. Life can be good whatever your circumstances.
  13. For me colour is a big deal. If the wall colours are neutral find some cushions, curtains, bedcovers etc to give you colour. Flowers are a great idea but if you don't have a lot of time and energy pots are the go. I admit to having a hundred or more but a small group of pots with colourful flowers and greenery work well and are easy to deconstruct for winter. I hope you make a happy home for yourself wherever you go.
  14. Yes, 6am the next day for the afternoon chat when we go off daylight saving on Sunday and noon for me on the East coast of Australia for the evening chat. Will endeavour to change my security settings to get into chat when Trevor gets here and can help me with that. I don't seems to be able to get it right by myself.
  15. Went on again this morning, no room box. My tablet settings won't let me in . Will ring my son for advice. Does the new chat use Java or Flash like the old one did? I have a new name now - mine 🎆
  16. swilkinson

    ******sigh******

    I have a feeling this is a time to time thing, based on the end of Winter and the coming of Spring, a late version of SAD, I get it in September each year.Then I question who I am, what I do, how effective I am at that. I question why I am alone, if anyone "out there" cares about me even. In the end I do what ASHA suggests and just let time pass and somehow I find myself enjoying life again. I hope you find the same Kelli (((Hugs))).
  17. I'll make sure I've got the latest updates before I try again. I managed to leave a couple of "Hellos" in the lobby. All I have to do then is set my alarm as your starting time is 7am this week and 6am next week as we go off daylight saving on Sunday here in Australia.
  18. I got to the chat rooms but wasn't able to post. I will get up early another morning and try again. It is about doing a meet and greet from time to time for me.
  19. I went to the throat specialist, he said the thyroid operation was the way to go but probably the right side of the thyroid removed would be sufficient. I don't know how I feel about that. Anyway I agreed and now await an operation date, probably in May. He also asked me if I wanted to have the brain aneurysm surgery first but as the thyroid is the lesser recovery time I said let's do it first. This may be the wrong decision but I hope not. I really miss having someone else who can help me make decisions now as my family say: " It is your decision Mum." The weather has suddenly got colder, last night was a cold snap bringing a dusting of snow to the Snowy Mountains and the cold winds came north to us. Then today it rained and I spent my gardening time rearranging my autumn wardrobe. I have a lot of clothes available, I just keep recycling them every year. Some of my clothes must be almost vintage now. I come from the mix and match separates era so it is a matter of matching blouses to jackets to skirts or pants to shoes etc. Of course the thick stockings I am wearing will be less obvious in winter which is a bonus. I had a enjoyable week out west in an area called the New England District going out by train to go to a friend's 70th birthday party. Another couple stayed with him too, old friends from way back so it was a time of reminding each other of shared events and the fun times we had. Of course that would once have included Ray which made me a little sad. I guess you never get over a loss, just spend less time thinking about it. Those 44 years together will always be a background to whatever is happening to me now. The next event will be Trevor and Alice coming here for the school holidays towards the end of April. While they are here they hope to go to the Royal Easter Show in Sydney, to Taronga Zoo and possibly the Australian Reptile Park so I shall hardly see them. I love having them here and of course it means having the other grandkids visit too and mayhem all round. For a week it is great fun. Of course Christopher is in University now so I will probably just have Naomi visit this holiday. Life changes all the time doesn't it? When I came back from my inland visit I had the house lights fuse, seems some of the house wiring may need replacing. Actually I need it all reviewed now. That is one of the problems with a house like this that has been built onto a few times, you forget how old some of it is, the original three rooms having been built in 1959! We bought it in late '60s and as our family grew more had to be added onto it to accommodate us. I sure miss Ray for that too, where is my lovely handyman husband now when I need him? Life somehow is always a mix of happy and sad for me. I hate being a widow. I loved being a member of a couple, it always felt safe to me. Not that Ray and I were the perfect couple but someway or another we always managed to compromise. A new friend said to me: " Sounds like you were always fighting." but it wasn't like that. And of course there were all the years of me looking after him but I always included him in the decision making as much as I could. That is what a true partnership is about. This is a blog about the way life is as I live it now, I have some freedom but it comes at a price. That price is loneliness. There are certain advantages, like I sleep at night without that voice calling: "Sue can you help me?" I still sometimes dream that. I miss Ray. And life is not as good without him. End of story.
  20. 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.
  21. swilkinson

    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.
  22. 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.
  23. 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.
  24. 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.
  25. 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.