swilkinson

Asha, I hope you have soon pain free too. Pain takes away the joy in life.

Prayers coming your way. So sorry your doctors don't "get" your disabilities. I found that with Ray too, I was always asked to help him stand, sit, climb up , hold still. I know that is what caregivers do but what happens to those who come without a caregiver?

I can't comment on the aspect of living in a disabled body but on the subject of loss and disbelief I have been known to hear a noise and call out to Ray, who has been dead over five years. I do know he is not here but still waking out of sleep think he is. Some things we can never truly get over or as Heather says can't internalise.

Kelli, that is amazing, you just walked into the woman's life just when she really needed someone like you.I am glad she took up the offer of free classes, hopefully your friendship will blossom there. You have so much to offer as a friend and may be a way of helping give her new enthusiasm for life.

Happy Birthday, hope you and your twin enjoy every minute of your time together. You are right, a little practical help is the best present. Hope you have/ had fun together.

You know how much you mean to me Pam, and how much you have helped me on my journey. I am one of those strange people who do remember others are worse off than me. When I am in pain people like you inspire me to be brave and stronger because my suffering is only temporary. Keep on being you my friend and in the process educating and empowering others.

We say: "Keep on keeping on." I guess that is the same thing. Asha you always have an inspirational thought that resonates with me. Thank you.

Hope Spring happens for you soon, just sitting out in the sun can raise your spirits and make you feel better. Mum used to give us lemon juice and honey for sore throats, much better than steroids. Some viruses seem very hard to shake off so hopefully you are better soon .

Thanks for reposting this Steve, we all need a challenge. Come on bloggers - I am sure you can do a 100 things blog.

I had my operation to remove my lymph nodes on the left side of my trunk seven weeks ago, now I am finally healing. With my usual routine unavailable I was glad I found a few new things to do. I also had a lot of visitors, some of whom had never been to my house before. I am not a very tidy person and was a bit worried that some of my friends might judge me on that. I soon realised that most of the people I call my friends love me just the way I am, a very comforting thought. One of the ways I kept busy was a form of pruning where I just cut what I could reach without bending or stretching, I figure I can go back later and cut back the rest. A friend came on Saturdays and watered the garden for me. I wanted to tidy up inside so found one way was just sweeping everything off cupboards and then putting back only what I needed to, leaving more space. It wasn't really productive time but nor was it wasted. And it has certainly made me appreciate the flexibility I think of as"normal". I had community nurses come to dress my wounds so enjoyed a few minutes chat with them and with the women who came to do some domestic chores. Going through this period has made me more aware that it is okay to accept help when I need it. I am in a community that considers anyone over 70 "elderly" so help is available for a price. And accepting that reduces the strain on my daughter and the worry the boys feel because they cannot be here to help. Since my diagnosis with melanoma in August last year I have talked to a lot of people about my case and melanoma in general. Like the support we find here among those experiencing strokes those who have experienced melanoma love to share their experiences. Everyone has a story, some are happy with a good outcome, some are sad. Many people are interested in my experience because our beautiful sunny climate makes melanoma a common occurrence. Some of them understand the implications others still have the head-in-sand approach. Some of the nurses took photos to show a partner the consequences of not going to the Skin Clinic. I am useful as a bad example! I picked up two of the ladies I take to church this morning, I am slowly getting back into routine. One is coming up to her 101st birthday in May, I love her way of enjoying life. She is still living in her own home and manages most of the tasks of everyday living. The other lady is in her nineties and legally blind but manages with some help. They are from a tough generation having come through the Depression and second World War. My third lady is on hospital unfortunately. The school holidays are in another week and I will have Trevor and Alice here for six days. I am so looking forward to the visit but aware I will have to have to pace myself as I will not be back to my fully energetic self and five year olds are a little demanding. Hopefully the weather will still be mild enough to enjoy being outside a lot of the time. There will be opportunities to get together with the other cousins too. So plenty look forward to in the weeks ahead. I just have to stay well enough to enjoy it.

I can see in a way that a picture without sound does enable you more control. I think we've all wanted to rewrite an ending so maybe that is what your husband is doing. I did go through a stage when Ray was in the nursing home when out of a large collection of DVDs I could only watch about three of them. I put this down to stress. I simply! I wanted some stability in my life and so I wanted movies where I knew the ending. Perhaps you could take your husband to his doctor to see if this behaviour is anxiety based.

Love, crush or not, is always a good feeling as long as you know it cannot be reciprocated. Look around there might be someone almost as attractive among your present friends. After all it is almost Spring in your part of the world and in Spring a young girl's fancy may turn to love 😘

Finally got the two leg drains out so only one more to go but that one will have to be on for up to three months. I need to make an effort now to stop being the patient and start being me, even if it is in loose fitting dresses to disguise the drain, another learning curve for me.

Sandy that is a fantastic idea , especially with Spring and warmer weather on the way Then you should be able to plan some outdoor activities too.

Asha you have a very special husband, exceptional really. I know you appreciate what he has allowed you to do, I know from experience how hard it is to stand by and watch someone you love struggling to relearn old skills. I hope the happiness you two have found together continues as you live out your lives.

Hard to believe that kiddo is a grown man of 21 now. As his parents you have done a great job of raising a fine young man. Yes, he probably has his faults but we all do. He will do things in ways you would have done differently but by accepting him as he is you will regain your peace of mind…

My blog has been since 2006 a partial record of my life, fiirst as a caregiver and now as a widow I have never worried about what I wrote or who read it as it is a personal journal but one that might always resonate with others. Sometimes it is like a holiday journal, it may be about my family or what is happening in my life, I don't think it matters. The benefits have been that I have had a way of recording what is happening from a personal point of view. I am now 70 and for the past 8 months on a different journey as the result of finding a dark spot on my left leg had become a melanoma I climbed onto the medical merry-go-round It is a hard thing to suddenly discover you have a malignant melanoma and has resulted in having three operations so far. I am still recovering from the last one. I just spent a week in hospital and it was not a good experience as my local hospital that is an ever growing complex does not seem to be able to cope with what I need doing. It seems sometimes as if we do not keep up with all the new knowledge and try to substitute technology for teaching and so fall behind. The hospital was rolling out a new scheme to computerized the medication input so nurses were all looking at screens not patients. Which meant that call bells went unanswered and everything else took second place. I must say that although I am still not confident that the infection has gone I am glad to be home. At least here I can set my own hours, eat my own food and it is quiet enough to think my own thoughts. So I have decided that as soon as I am able to drive again I need to plan some different activities. I missed out on most of the summer activities and several parties I would have loved to attend. I haven't visited my son in Broken Hill since last July or seen any of the grandkids since Christmas. I feel as if my whole life has been consumed by medical matters, so many tests and xrays and scans, blood tests and interviews. I need some leisure and pleasure time now. I know there will be more tests as I am in several studies now but I don't want my life filled with that I have once again really appreciated the friends who have shown their concern and offered help. Not that they're able to help in the way I need but the fact that they offered. My daughter and daughter-in-law have been great transporting me from test to test and Shirley has organized a lot of my care. The recovery goes on. Hopefully no more time in hospital, I would like to have time to enjoy autumn and the warmth of the sun will help me to heal. I have to stay in my house for at least another week. So what have I learned from all of this? As usual that life is uncertain, that at some stages life seems to be passing me by. But that's never the truth is it ? We learn something from every event we go through, that we have so many opportunities to see our lives from a different angle and even something that may allow us to make life changes. I met women who have suffered greatly yet are still ready to laugh at life. I find that very inspiring. I hope that I can act as bravely as they do in my turn. I know not everyone finds a sickness like cancer or stroke easy to cope with but it certainly brings out the best in some people and I am happy to know so many in my own life. The WAGS group are still my best supporters. I owe so much to them. I wonder how someone who is already looking after a spouse, partner, son or daughter can still find time to reach out to others. But that's what happens. And I am very thankful for that. In time I will endeavour to repay them or play it forward.

Hope you get the summer you deserve. You work so hard you need time for you to enjoy the activities that relax and renergise you. Sarah I hope you get the help you need son, someone steady and reliable.

I'm back home again after five days in hospital. I still have a lot of healing to do but it is nice to be home. I had a good sleep last night, the first in a week, it is great to be back in my own bed again. I wasn't in the Melanoma Unit this time so learned a lot about other forms of cancer. Whenever I feel sorry for myself I need to remember there are a lot of suffering people in the world dealing with whatever life has thrown at them as well as they can and be glad I have the power to overcome, to change and be positive. No "poor me" sessions. Thanks to all who have supported me through this, it is good to know I have that backup when my spirit feels faint hearted. I can be brave when there are people around but on my own not so much. I know that a lot of you can relate to that. It is great that I have Shirley here today but tomorrow I will be on my own again I will have some support from community nurses who will know what my treatment is all about as it is similar to what the breast cancer girls go through. I am so grateful for all the research that has evolved into the treatments available now. On a brighter note it is raining again after a long dry period so no worries about the garden. Funny thing is three people watered it on Saturday, my friend Cate, my next door neighbour Brett and lastly my daughter Shirley, so it had good care. I love growing fresh herbs I hate the plastic taste of hospital food, with no herbs or flavourings it is just bland and unappetising. I eat it only so I can heal, certainly not for any other reason. But at least now I am home again I have choices. I did a lot of cooking in the weeks before the surgery so have a lot of food I can heat and eat. Because of the rain today it feels like autumn, nice after the heat but I hope there's more warm weather to come, I feel as if I have missed out on the best of the best summer has to offer. But March can be a good month and April too so all is not lost. And once I regain my health I can take on the world again. Or that is what I feel right now. The reality may be different. I have a preset appointment for a four week check up. I have volunteered for a couple of research projects so hopefully the results may help others. I have always believed in paying it forward. We all benefit from what others have been through as we know from the stroke journey. I'm guessing going through a journey with cancer is somewhat similar. Whether my life will go back to the way it was before I don't know. I do know that whatever happens I will always be grateful for the support of friends.

So true, parents that gave us a great start in life, gave us support and encouragement and helped us to have values. I am very grateful for that and tried to do the same for my three children. Like you I do have some days when things go wrong and I am down and it takes an effort to get back up again so I look for inspiration. I don't have to look any further than this group. You and Kelli and Sarah and so many others inspire me to go on, to have faith, to look forward not backward. Thank you Asha.

I went to the WAGS meeting today and it was so good to see those who have been an influence in the journey we have taken together due to Ray's strokes. The people in the group are showing their age now as I am sure I am but old friends are the best friends. So good to have them in my life and that we are ageing together.

Today was another two medical tests, one more to come on Monday and then a week without - me time. Church events start up this week too. Coffee and Playtime on Friday morning so it will be good to hear what the little ones have been up to through the holidays. I have seen several of the families shopping through the Christmas period so have not entirely lost contact. There may be some new families too as some of the little ones leave to go to school or preschool, others come to take their place. Five of my grandkids go back to school this week, Alice starts school next week. It will be a strange feeling for Trev who has built his own routine around her preschool days. I have seen all the grandkids except Alice over the summer holidays and feel very lucky. Trev is going to do some training to assist people with disabilities. He has wanted to do this for some time but the course hasn't been offered before so this is a great opportunity for him to change into a line of work with more opportunities. Because of the holidays and the hot weather a few of the outdoor jobs have been neglected so I have been out arrmed with a broom attacking spider webs. Spiders have thrived in the hot dry weather and multiplied. I am for saying " live and let live" until you they drape their web along my pathway and then it's "spider be gone". A little rain would be good to brighten n the gardens too, unfortunately my herbs died from the heat and it is too far into summer to plant more now. I have had a lot of phone calls from friends and colleagues wondering if and when I will be back to "normal". In other words when I will be resuming my usual duties in the church. It is a kind of acknowledgement that I do a lot of small tasks no-one else takes responsibility for. Many organisations find the same problem when a key worker is sick or unavailable. We are all different with different skills and so are missed when the unexpected takes us off the job. As a witty friend said to me: " how can we miss you if you don't go away?" Therefore the test is what happens when you are away. I have had a lot of time to think about my life since the cancer diagnosis, and have come to the conclusion that the only way to spend my time is the way I have been doing it for many years, one day at a time. It is the way we all need to live. For me there is no other way as I don't know what lies ahead. It is the way I lived when I was Ray's caregiver and still seems the best way to live. Maybe one day I will start making plans again, who knows? For now I am relearning the value of simple things , sunshine, scenery, laughter, friendship, things I have sometimes taken for granted. Thanks to all who have posted kind thoughts and prayers on my Facebook page. It is good to have that back up I know what struggles a lot of you have and yet you can still find time to think of me. Thank you, thank you, thank you.

Asha, your blogs are always thought provoking and I look forward to seeing the next one. I am with you on having the ability to go through the tough times. It is not the time to give up when you are half way there. And reading has a big place in my life too. Another good blog.

I have another battery of tests on Wednesday, just to confirm previous results. Very hot and humid weather, but it is summer after all. Just taking life a day at a time.

Kelli got it right, guilt, exhaustion, frustration, and maybe mental breakdown. I used to look at Ray and wanted so much to take him home but then remembered that he was there because he NEEDED to be there. Drop the guilt if you can, concentrate on enjoying the moment. (((hugs)))