Last weekend was the Women's weekend of the Stroke Support group WAGS, I think my 10th full weekend although I have sometimes
just gone to the Friday or Saturday night, depending on the circumstances. I remember one year I got my older son to look after Ray so just went from lunchtime Saturday until after the dinner. Of course the past six years I have gone as a widow. I shared with another younger widow this year as I did last year. She is only mid-fifties and still has children in her care as her husband died young. She enjoys the weekend as a break from her usual routine.
One of our members has compiled books of photos from each year back to 2005 the year before I joined. I really enjoyed looking through them and recognising some of the faces as old friends who can for various reasons no longer come. As usual it was a sad/happy time as we remembered those who are no longer with us, acknowledging also those who were foundation members. In every organization there are those who put in a lot of hard work to make events go well and WAGS is no exception. We are all grateful to the handful of organisers who make the weekend possible.
I enjoyed the company, the food, the entertainment, but as usual especially the dancing. Of course I would love to be able to dance the way I used to but found it impossible to be as balanced with the left leg musculature being so different now from the right. But I managed to dance for most of three hours so I was very proud of that achievement. And it was wonderful meeting up again with such wonderful, brave indomitable spirits, both caregivers and survivors. They are an inspiration to me.
Coming home is always a let down and I have been feeling that this week. I am busy enough, on the Lions Christmas raffle two mornings already but my trip to visit my daughter and family mid-week and go out to a Salvation Army lunch today was cancelled due to her schedule. It is a thank you to the officer's parents, and thank yous are rare. And then news of another death in the distant family added to my sadness. It does seem as if there has been a lot of deaths within my circle lately and I think that dims my usual brightness for a while. It is a reminder of our built in use by date when those younger than ourselves die.
Really now I have no-one to turn to when I am sad, I miss my good friend Lyn for that reason, we always included in our chats news about family members, happy and sad and I have no-one to do that with now. I think it is not likely that I will make another good friend like him. I really miss my girlfriend Jean, who died six weeks ago too. It was such a shock when she died. And without those friends from our formative years to share our memories with we are so much the poorer. I am really feeling that now.
But as we know life has to go on, Christmas get togethers are starting, bring a plate to this one, book in for that one. It is not only the busy season it is also the expensive season. I have the trip to Broken Hill to look forward to and other upcoming events but Christmas this year will be with just Shirley and family as Trevor and Steven and their families have other plans. Inevitably that will happen some years. But that is when I really miss Ray and that focussed family life we used to live.
We have just had one of the hottest November days for decades. What a difference a couple of weeks can make. The weather was still fairly wintery when I went out by train to Armidale one of our little inland cities to stay with family friends. The days were warm but the nights were cold and I was glad of the couple of blankets and heavier cover. Then one morning what looked like heavy snow clouds blocked out the sun and it really was cold so on went the winter weight jeans and jacket. I was glad I had gone out with a range of different clothes.
Armidale is a University city so I went to the University several times as my friend is doing a Master of History course. Isn't it remarkable to see buildings looking like big splendid piles of bricks and mortar in an otherwise rural setting? Of course this is a thriving town set in what we call the New England district so rolling hills, good rainfall and fertile soil made it an ideal landscape for agriculture of all kinds. That makes for a rich community who could easily afford to build such a magnificent University. Such a contrast to the practical but modern University buildings on my part of the Coast.
It was good to get away for a few days, I find when I am away from here with friends or family I am able to see life differently from afar. And it is good to have different conversations and to step away from purely domestic issues. I went on a visit to several historical homes and as my friend is a guide at one of them was transported back into the past to see how hard life was back a century ago not for the nobility but certainly for those who worked for them. Remember the butter churning, wood chopping, boiling up the sheets? And all done by young girls in service who also did the heavy lifting as the house belonged to three sisters and no men folk were allowed.
It is good to be reminded that we are so lucky to live now with so many modern appliances to make our life easy. Okay we have to do our own housework but it is not so hard is it? I was woken up early every morning as the house next door had poultry, both hens and ducks in their back yard and the rooster crowed as early as 3 am. I even cooked a couple of meals while I was away, it was strange getting used to someone else's kitchen. But it was so nice to be out in the country, I really am a country girl at heart. Thanks for the memories.
Then home and back to the routine. A couple of our older church members now have health problems so I visited one in a local hospital. I did some work in the garden the first couple of days I was home but two very hot days put that activity out of the question. It is easy to do nothing but that is not what I need to do. It must be Spring cleaning time so a minor declutter is in order. ( I think I say that every year about this time). This year has gone so fast with all the medical appointments that so much looks neglected. I wish I felt more energetic but I do feel my age now. More's the pity. On a bright note I had two lunches and one dinner out this week and one was actually a date. (Shhhh! it's a secret.)
On Tuesday I get my roster for the Lions Club Christmas raffle and an idea of what else we have to put our names on rosters for. There is still plenty of activities to participate in for church, with the Friday coffee morning, craft afternoon etc. And tomorrow is my preaching day. And I still have the trip out to Broken Hill for Trevor's birthday to look forward to. I like to be busy as long it is practical. There are a couple of medical events to get over, one at the Lymphodema Clinic and one at the Skin Cancer Clinic. And then there is all the planning involved in Christmas.
It is six years since Ray's death and much has changed, other friends have passed and l have some newer friends now and a different kind of life. Of course I would swap the life I have now for my old life in a heartbeat if that was an option. But it is what it is.
I just had a few days with my daughter and family, it was nice to catch up with the grandkids as I hadn't seen them since May. My grandson was busy studying as he starts his exams on Thursday. These are the last of his Year Twelve exams and give him his final score important for future employment and access to University entry. He is very focussed but I could see an element of panic which is quite common at this time. My grandaughter is still three years away from that stressful time. She is a good all round student and as yet unworried about the future.
Shirley and I went to Gloucester about two hours away to my girlfriend's funeral on Monday. I thought I would need support as this is the woman I had known since I was seven. Jean and I went through school till our third year of high school together and had always kept in contact. She will be missed by many as she was an art teacher, a singer, very active in her community and recognised as an artist Australia wide. I know she is irreplaceable in my life. We had many friends in common so it was good to catch up with some of them. But I will always be conscious of her absence in my life.
I am busy with rosters, they rule my life from now to Christmas. In Australia with Christmas, end-of-year activities and of course the coming of summer with school holidays starting in December. Our days fill with beach going and picnics etc so we are BUSY. I don't think the beach will be a big feature for me but when the kids are here I do take them so take advantage of living on one of the best stretches of coast in Australia. The Christmas raffle alone is two days a week out of my life for six weeks.
The Royals are here, Prince Harry and the Duchess of Sussex, so Royal fever is gripping the media. They are due to land shortly in an inland city called Dubbo and the population has doubled there. Good timing as they have had rain there so the signs of the drought are overcovered by fresh green grass and they will see it at it's best. This is the fifth Royal visit Dubbo city has enjoyed so it is the envy of many. It is a boost to any little city to host a Royal visit.
We are having a Fashion Parade and High Tea at the end of the month at church and I might purchase a Spring garment as my wardrobe contents is mostly old and tired. It is many years since I was a trend setter. But it does a girl good to have something fresh and new to wear. Call out to caregivers... remember to look after yourself and from time to time to treat yourself to something special like a pamper day or a new outfit. All caregiving is hard and you need to look after yourself and keep your sense of self. I am only really seeing that in perspective now.
And so I am enjoying slightly warmer days and longer days as we are now on Daylight Saving time. Nice to have a chance to do some gardening that results in flowers brightening the back yard. There seems to be a time for a relax after a long day, this is when I really miss Ray as we used to review the day together. Ah well life must go on.
Sometimes I take the hard decisions and accompany someone on the journey to death. It is something that I was trained to do as part of my Chaplaincy training. This time it was more difficult though as it was someone I knew well, the man I went out with for a while. Lyn and I broke up in November 2016 and four months later started a friendship that lasted till last Thursday when he died. He had twelve weeks in hospital and it was hard to see him slowly deteriorate and probably during the last two weeks the quality of life was no longer there.
I will really miss him, he was a great conversationalist and we talked for hours over cups of tea and across cafe tables. Once I accepted that friendship was all he could manage because of his ill health we became the best of friends and I am going to miss him a lot. The funeral is on Friday. I have met all but one of his children and step children so will feel comfortable being there. I do go to a lot of funerals anyway but the closer I am to the person the harder it is for me to not be an emotional mess.
Apart from that I have been doing some gardening, preparing for summer by doing a little Spring cleaning. This week I have Trevor and Alice visiting so we have been out most days. Alice loves going to the beach
even though the weather is still cool and the ocean temperature cold she has been in doing her version of swimming. Today we went to an area with a children's wading pool and she loved it, she palled up with a girl her own age and they ran around together, a great way to burn energy and keep warm.
Yesterday we spent the day with Pam and her three children and it was great to seen the four of them playing together. The boys play games Alice can join in and understand with her being so much younger they have to be gentle with her. I think being with cousins is a great thing for Alice. Unfortunately with major exams ahead for Christopher and much to do Shirley and family won't be coming down before Trev and Alice go home. A pity as she enjoys their company too. I may see them next week.
The country is still very dry, Trev said kangaroos, emus, goats and cattle are competing for what little grass there is and carcasses litter the roads. Drought is heartbreaking for all our country farmers and my Lions Club among many others is collecting money and goods to send to the country to support farmers and their families. It is probably too little, too late but we need to show them we care about what is happening to them. After all we really do rely on the farmers for the food we eat and some of the materials for the clothes we wear etc.
The year is flying by already people are asking about my plans for Christmas. I never know what I am doing this far ahead. Shirley is not moving for at least another year so that is good. I will probably spend Christmas with her family. There is a lot to get through before then. I hesitate to make plans, in the past so many things have gone wrong that for me planning too far ahead seems crazy. Just have to wait and see what happens.
I went to see the neurosurgeon on Tuesday. I was interviewed by a young Asian associate doctor and sent for a 3D MRI and angiogram, a brand new way of showing the blood supply within the brain. The results were given to me by the associate and then I saw the specialist. It appears the aneurysm is larger and deeper than previously thought but at my age they are not going to operate as it would mean a full brain surgery. Coiling, one method of dealing with an aneurysm, is not an option. I think I was a little bit shocked by the news but taking into consideration I have had the melanoma op, the lymph node dissection etc I am not really a good candidate for another operation, especially brain surgery.
The specialist was fairly brutal because I think he wanted me to know if I wanted an operation it had to be after I got a clearance from the melanoma specialist and that would take time. He said he knew I had a long wait ahead of me but not to worry. Not to worry!!! So back to basics, no stress, no strenuous exercise, no * blush, sounds like no fun at all. So what can I do? As usual make some decisions, live a quiet life, let the future take care of itself, one day at a time. Hell's bells, what else is new?
So I have a plan. I have to just go on the way I always have, going about my usual routine one day at a time. Whenever I start to worry I will visualise that little bubble about the same size as the tiny diamond on my engagement ring. I will visualise a tiny angel sitting alongside the aneurysm, with her thumb firmly on top of it holding it in place. I know one day it may be that she will take her thumb off and the pressure will build up and life as I know is it will be no more. But It will happen to us all one day, in one form or another.
I went to Dissection Clinic down in Sydney today and there have been no changes in the past three months to the Lymphoedema, which is good news. In the interview I told her I had regained my confidence in walking down stairs which had taken a year to do and had recently started yoga again. She seemed pleased with the progress. No more interviews in any of the Sydney specialists rooms until next February. Hurray! I have survived twelve months since the melanoma was removed and six months since the operation to remove the lymph nodes. I have a lot to be thankful for.
My daughter took me to both appointments, I was so glad she had the time. We stopped for lunch today before we left Sydney and although it was expensive it was a happy time and one we rarely enjoy together. She also got the news today that the position she holds as Captain of the Cardiff Corps has been extended for another twelve months which is good news for me. If she had been moved it might have been a lot further away. Her husband's appointment has also been extended. Though he will now have a wider area to cover, which means a lot more time on the road. But she said he can cope with that.
On a less happy note my special friend who has the leukemia has now been in hospital for eight weeks and he now seems to be getting much weaker. I have been a regular visitor and it is painful to see the deterioration. With all the people I have ministered to in hospital you would think I would get used to seeing that happen but I never do. I am always an optimist, thinking with the right treatment, an adjustment to their medication etc they will be fine. But that is not always the case. So maybe there is more bad news to come.
There are signs of Spring now, birds building nests, green grass after a little rain, even some blossoms on the prunus trees in the parks we passed today. Hopefully the nights will warm up and we can start packing away the winter clothes. I have no plans, the future is a blank canvas. Don't think there is much fun and excitement ahead but who can tell? If I wake up breathing and moderately energetic I will endeavour to have a good day.
Just plodding along, hoping for better days. I have a head cold so feeling down and this is another of those times when I want to scream: "Where is the person who is supposed to take care of me?". It is hard not to feel resentment after looking after Ray for so many years. I seem to have few days like this in winter every year. Yes, it is hard to be on my own when I am feeling sad and shaky but there are no money back guarantees in life and I have to remember that. I can please myself when I go to bed, when I get up and what and when I eat. But I still have to get used to the fact that freedom and loneliness go together.
There is always plenty to do this time of the year. My six week course on Better Health Management takes up Tuesday morning, and the rest of the week seems to fly by. I haven't learned anything new while doing the course but it has reminded me that now I need to take care of myself the way I used to look after Ray. Not an easy lesson to put into practice. The long dry period has affected the garden and it looks more like late summer than early Spring with plants showing signs of stress and the lawn drying out. I do water the pot plants as needed but the August winds are drying them out so they look dessicated, not holding out much hope for Spring bloomings.
Our Lions Club has been raising money to go to farmers out West to buy stock feed. We are in the middle of a long term drought and country people have run out of water. I can't watching the news as it all seems like gloom and doom, dying sheep in dust bowl conditions but it does affect me in other ways too as I have friends who are on the land. Sometimes it is a very hard life for them. I haven't heard from some of them for a while but if you are hand feeding stock there is not a lot of time for anything else. I understand that.
I just had a phone call from my sister-in-law in Queensland, she is worried about feed for the few cows and horses she has on agistment that she has on her acres. She have always had a farm of sorts and worked outside the property as well as many wives do. At over 70 she is starting to find she doesn't have the strength or the energy she used to have. If she and my husband's brother were to leave there they would find life very different. She has three cats and three dogs as well all used to the country way of life.
I had a phone call from her daughter last weekend. I call Kim my best neice as she visited me when I was in hospital after the operation. She lives just out of Sydney. Unfortunately the opposite side of Sydney to where I live. She is worried about her Mum, thinks the farming lifestyle is too much for her. I guess my kids worry about me too, we older folk are too fond of our independence in their eyes. I want to be independent for as long as I can but know that like the old ladies I look out for that will only last while I am well.
Ageing is a worry and more so if we live alone. I don't know what the solution is, the government wants us to stay in our own homes for as long as possible, but as we get older we get frailer. At the moment I don't need services but who knows what the future holds? The last lot of tests showed no new problems but one of the future ones might. It certainly seemed easier when I had a partner to tell my troubles to. Now I find I exchange thoughts with some of my widowed friends who are in a similar situation.
Whether we care for someone or are the one needing care our future is undetermineable and often feels out of our control. Which is why we need to take life day by day, getting out of each day what happiness we can. I do try to live life like that. I have certainly lived an interesting life, if a trying one at times. I rather thought I had earned some peace but I guess we all think we deserve better. Roll on Spring.
Once a year the Stroke Club I belong to gets together with four other clubs and we have morning tea with a guest speaker. Today instead we had a group survey as a charity fund has given a donation so that the Sydney based group can supply two coordinators to help the other groups extend their services. It is a great idea and addresses the problem of resource poor clubs going out of business for lack of new members. Our club is a flagship club as we have a lot of people sent to us by medical professionals.
I have been a member of WAGS since 2006 and still belong because I can support the other caregivers and survivors on their journey. I have some wonderful friends in that Club who have supported me in so many ways. The discussion group I was in all said that they didn't know how they would have survived as well as they had without the love and support they had received from fellow club members. I agree wholeheartedly. In the bad years being able to tell others exactly what was happening without fear of criticism made such a difference. We all need that, people who love us without wanting us to be perfect, or even rational at times.
I am so grateful now for friendship. Just to know that people love me or simply care about me makes such a difference. When I am not well, when I am looking at my life and not liking what I see in the future, when I am looking at the mud not the stars is when I need to know that I am accepted by people just as I am. I support others as much as I am able to, I have always had a great love of people, all kinds of people, and that keeps me going. Today I had lunch by myself in the shopping centre and just sitting watching families eating, laughing enjoying each other's company lifted my spirits.
My family do love me but their busy lives mean they don't support me day to day. I know that is typically the case for many others here, we are here, they all live some distance away. When Ray and I were both well and had the campervans there was no problem visiting family and friends but that decreased after his strokes. Now for me as a widow it is hard for me to decide to travel alone to see friends who are spread far and wide. And few come to see me. So it is easier to stick with local friends and leave those further away to be contacted by email or the occasional phone call which means we lose the closeness we once enjoyed.
I had some good news last week when I saw the Melanoma specialist, my PET scan showed no hot spots so that is one clear test.I need four to be fairly sure I am out of danger. One down, three to go. I do have several other health problems to tackle so my specialist is making me an appointment with a neurosurgeon to report on the aneurysm in my brain. She said now she has seen it in the MRI she must take the step of involving another health professional. That is another set of appointments to add to my calendar. But knowing what I do about stroke it is better safe than sorry.
I am doing a lot of hospital visits, people from the church as well as friends from the community. One of the members of another organisation I belong to has a brain tumour, another a broken shoulder from a fall. My special friend Lyn has been in hospital for four weeks from when his chemo caused his body to shut down. He is slowly recovering but three days on the floor without food or drink have taken their toll. That certainly is a warning to those of us who live alone to make sure others know what is happening to us. I am aware it could happen to me under certain circumstances. I am doing a short course called " Better Health Management" which emphasizes the need to keep fit and take care of ourselves. I know I need to exercise more and keep myself strong.
Spring is slowly advancing, sadly with no rain and most of the Inland in the grip of drought. A lot of our wheat, sheep and cattle farmers are in dire straits. Meat prices are rising and the cost of vegetables as they are sourced from distant markets. But I have a roof over my head and food on the table. Really we have little to complain of don't we? That is why we need to be thankful for what we have and mindful of the needs of others.
I am surviving winter, in five or six weeks Spring will be here. This has been a cold winter but today was mild and most people seemed to appreciate the day, even saw some out in short sleeves. I am in my busy week, hospital visit today, birthday morning tea tomorrow, church women's meeting on Friday I still like to be busy just not too busy.
I have started a new course called " Better Heath - Self Management" It is a free course, a government health initiative to tell us to meditate instead of taking pain medication, or is that my prejudices showing? When I talked to the group about my problems with Lymphoedema I got some blank looks from the nurse conducting the course so I guess she has some research to follow up on. Ignorance is not always bliss. I have an appointment next week with the Lymphoedema Clinic. What I am hoping to get from the course is some help with my gait since I am having trouble walking down stairs still.
The family are doing well now, all the grandchildren back at school. I did get to see the three grandchildren from Adelaide but not Shirley and family as they were suffering from chest infections etc. I think we will all be glad when Spring arrives I don't know what plans to to put into place this year with all the restrictions of my health problems. I can only fly for three or four hours so my plan to go to England next year is no longer possible. I can't do international flights at all now. Such a pity with all my cousins in England and Canada.
So what will I do when the warm weather comes? Think local. Be happy I am still relatively able bodied. You would think by now I had learned not to keep worrying about what I can't do and concentrating on what I can do. But moving forward through life changes is always hard to me. For me life settles into a routine I can live with, the next minute that routine is interrupted and I feel as if nothing works in my world. One thing leads to another and everything is wrong. It takes a while for me to see a way forward again and find my new normal. So my new normal now is venture somewhere within a more realistic distance from home.
My life is still full with church and the Lions Club and the various forms of volunteering I do. Last Saturday the WAGS group had "Christmas in July" an Aussie custom that is just an excuse for a mid-winter get together. It wasa great lunch and a good afternoon of catching up and I really enjoyed the company. I do keep in touch with as many people as I can but old friendships do fade. Sad to see signs of strain on the faces of some of the older caregivers now and know that in a way I am fortunate that part of my life is gone now. I am glad I was in good health when I had Ray to care for.
So I get the results of my tests next Wednesday and go to the Lymphoedema Clinic on Thursday. There is always some anxiety about the results but we all have that when we have tests. I will continue to take life one day at a time and get what fun out of each day that I can. I am looking at life ahead of me as calmly as I can. And yes ASHA I am trying to go with the flow.
It is the colder, darker part of winter. Rainy days have been and gone, now it is blue skies but bitter winds. This mix is the setting for my usual dose of mid-winter blues. I haven't had any visitors for a while now, just a few phone calls, the ones I dislike are the ones telling me that another dear old soul from church is in hospital with a broken arm or hip or a bad dose of flu. I want to scream: " Give me some good news." But good news is in short supply.
My daughter has been ill with a chest infection so I rescheduled my medical review as she likes to be there to find out the results and the Professor's conclusions. I have had all the required tests and the results must be okay or I would have been notified by now. I always used to tell Ray whatever the doctor diagnosed he had had it for a long time so why worry now? And I am applying that as advice to myself. Wherever possible I just live one day at a time now. I wake up, put my feet on the floor and wonder what the day will bring. It is the best way I can live. With the way my body works now it is not worth making plans to do things I don't have the energy or stamina to carry out.
Last week I had a tree taken down, it was beginning to lean over the house and when the winds blew strongly I was starting to worry that it would fall down across the house. The tree felling gang had a big machine that chipped the wood into sawdust and so I kept only the trunk wood which the neighbours wanted, one for his indoor fire and the other for his outdoor BBq. Wood fired BBqs are slowly returning to fashion as we start realising that we must cut household costs now to survive.
It is not all gloom and doom, I do not feel as tired as I did a month or so ago and my body seems to have adapted to the pressure stocking. I just can't comfortably do stairs. I still have the Lymphoedema, I still have problems with the cut muscle but I am definitely stronger and better at walking now and I hop in and out of bed more or less the way I did before the lymph dissection which is a blessing. The sad thing is that again due to the Lymphoedema my travelling days are over, I cannot fly for any more than four hours. I live on an Island, I know it is bigger than Europe and Asia combined but it is still surrounded by sea (or girt by sea as our National Anthem says) and so flying is the usual way to travel.
So my plans for Spring and Summer don't include a lot of traveling. In fact I don't really have a plan at all which is most unusual for me. But that has happened in the past and some fun things happened anyway. So no sense in being sad, I need to have a positive attitude to life. Okay so that is not going to happen every day, I'll still have whiny days and blue days but I'll try to make some good even great days. I went to an 80th birthday party last Saturday and thoroughly enjoyed the day. Fun is where you make it happen.
School holidays are on now, the mid-winter break so I will get to see the three grandkids who come and stay with their Mum Pam and maybe have my daughter and family here for a day. I haven't seen them since the end of May. Funny how you long for your kids to move closer and when they do you hardly see them. As the old saying goes: " We all have busy lives." Well Ray and I used to have them too at their age but we still made time for our parents. It is a different generation with different priorities.
Hope I don't sound too down. There is a lot of good dayvs ahead of me I am sure and when the days get longer I will be out in the garden and hopefully out with friends. When the sun is out the neighborhood is alive with kids playing, dogs barking and the usual working day noises which I do enjoy when the front door is open and the sounds filter through it. It is on those cold and gloomy days I suddenly feel that loneliness creeping up on me. So I am really looking forward to longer, warmer days to come in another six weeks or so.
I have just been to Broken Hill for a week with Trevor, it is cool and dry inland so on the sunny afternoons
I sat on his verandah and read and I'm always happy to do that. When he and his girlfriend were available (they are both busy doing training courses) we went places, some new, some old favourites. On my birthday we went to Silverton, a former mining town now a popular place for artists and went to a couple of galleries. There are some wonderful paintings of that wild desert country beyond the Hill. It is good to have time to just enjoy being in a place where life is so different from home.
It was my birthday and Alice's birthday while I was there, so two celebrations, mine was a nice dinner out, hers a special afternoon tea. I haven't any unreal expectations these days so it was just good to be with family for the day. I enjoyed my time with Alice it was nice to see the fun she has with Trevor. He plays a lot more games with her than her mother does so she has a ball while she is with him. His girlfriend has a Chocolate Labrador who is very popular with Alice, she hugs him and drags him around, I am glad she responds so well to him.
The flying was not the problem I was told it could be, it was more my fear that something would go wrong that bothered me. I know the problem of increasing the lymphoedema due to pressure was on my mind and of course while the stocking plus the new leg wrap was supposed to prevent that happening the stiffness made me feel less confident in my ability to climb steps, sit for a long period etc. The walk through the airport was easier than I thought it would be as I had allowed plenty of time for that. I never realised how much I took my ability to get around for granted and jhow much easier life was prior to what is really just a minor glitch in my life.
I looked at going on a trip out to one of the local opal fields, about three hours drive away on my next visit.I love opals and it is interesting country, boney and dry but with it's own special beauty. Living on the coastal strip as I do I yearn sometimes for the silence of the bush and Broken Hill gives me that feeling of isolation in the big sky country. There is something special about the sensation of seeing so many stars at night, having a different sunset every night, waking up to bright skies in the morning.
Now home to take up the routine tasks. It has been raining while I have been away so the grass is greener than when I went away, it is also colder as there is an overcast sky. So now to settle down to my winter tasks, knitting, crocheting, reading, catching up on phone calls and correspondence. Today I went to a local market, had some time at the shopping centre and then some time doing preparations for the Lions BBQ on Monday. It is good to have a variety of things to do. Some things I have had to give up but most of my usual routine still applies.
It is good to be back and catch up with friends again, luckily nothing much happened while I was away. My other family members don't seem worried about me now things are stable healthwise. I know there will be many tests ahead of me for three to five years yet but know also I can only live my life one day at a time. And that is the same for all of us.
This afternoon I went to the Lymphoedema Clinic for the first time, I was anticipating getting some of my most pressing questions answered. I had done what everyone does, gone to Dr Google for my answers about the relationship between lymph node dissection and lymphoedema. Most of what I found related to breast cancer but that is understandable as the breast cancer girls pioneered the use of lymph node surgery. I am very grateful for that and the surgeons who pioneered the treatment.
The girl who I saw put me through the usual paperwork, I am getting used to it now, taking them step by step through the discovery, diagnosis, surgery, recovery etc. Then there was examining the wound site, taking the measurements of both legs etc. Then she asked me could she call a colleague in and the colleague explained that I would have a new pressure stocking, measurements would be taken six monthly and on and on. I was a bit puzzled as the surgeon had said I would have the stocking at least until the end of October, so I mentioned this. The colleague laughed and said : " I don't think so, this is forever." And I burst into tears.
The girl who had asked me the questions was dismayed and tried to calm me down. I'm sure they thought I knew this was a possibility. But I didn't. I assumed the condition would settle down and I would only be wearing the stocking for long distance traveling once October ended. I guess it is like any diagnosis, I found it af bit hard to swallow. Initially it was devastating. I thought it was a case of accepting the changes, having some physio and then a new life with a new normal. Silly me.
When the colleague has gone back to her room the original nurse Connie explained that certain factors like getting overheated, stressed, tiredness and overuse of the affected leg can cause the lymphoedema to spread. So it was safer to continue to wear a pressure stocking. Dr Google didn't tell me that. So I now have to get used to the idea of having this condition forever. I can still take the stocking off for short periods of time, wear gym pants which will apply some pressure for swimming, walking on the beach with my grandchildren etc but a lot of normal summer pursuits will have to be carefully monitored because of the possibility of overheating.
I know a lot of my friends will pat me and say "never mind" but I do mind. It is another body blow, another little death, the death of summer dreams. Just the thought of finding some place to change in and out of a pressure stocking near a beach kind of denies being able to do anything without prior planning. "I'll just be five minutes, well closer to an hour I'm afraid." Nothing spontaneous about that is there? Okay, I know that is the case for a lot of stroke survivors so I am lucky, but I need time to get used to the idea.
And that kind of sums up the last couple of decades, changes that I have had to get used to. And eventually I do. But not without a fight usually. Sorry as I am about my inability to adapt to every new situation. Maybe body image is still one of the issues, I want to look and feel as good as I can for my age and circumstances. I guess we all do. I know some people are able to relate to this and others will find it difficult. After all I still have the use of both my legs.
How long is forever? Nurse Connie said it is like today, tomorrow, the next day and the day after that, if I can think of it that way it won't be so hard. Perhaps the survivors will understand that. I can in a way. I did a lot of that when I was a full time caregiver for Ray just looking a few days ahead, not too long ahead or I couldn't adapt to the sudden changes. And we all know how suddenly life can change. Hopefully this won't be the case for me. Until the next set of tests I can pretend nothing else is going to happen can't I?
From time to time I have a melt down, at five years out from Ray's death it is not frequent but sometimes intense. Tonight I was watching a travel program and there they are, that older couple walking hand in hand along a beach and before I knew it I have tears streaming down my cheeks. Darn! I don't want to feel like this, like I am lost and alone and yes even deserted and abandoned because that's what being a widow feels like sometimes. As if that special person who like you said "till death us do part" should have been here keeping their side of the bargain.
At the end of July Ray and I would have been married 50 years. I am going to find somewhere else to be alone for a few days around then as I don't want to be here wallowing in grief. I want to feel okay without forgetting Ray but with a renewed life that is my own. I know a lot of widows and widowers have managed to get over the death of their partner, find a new life, sometimes even a new partner and sometimes within a couple of years of the death of a spouse or partner. Why I haven't I don't know except that for me it is still su'n'ray.It was that way for 44 years and somehow the thought still lingers.
Sometimes I talk as if Ray is still alive, I know that because a friend told me so and sometimes I am aware of that myself. Most of my stories are Ray and Sue stories. This my friend tells me will certainly put off anyone who may be interested in me. Well what am I supposed to do about that? In the first place how do I know if a person is interested in me or not? Aussie men are famously lacking in courting skills, giving little indication of their feelings. I am very poor at judging how people feel so that combination of characteristics is unlikely to enlighten me. Also I have been told a few times that I am just like " a big sister" to one or other of my male friends which is not a good analogy for anyone seeking a budding romance.
So the hand holding, walking along the beach thing is never going to happen except with a young grandchild and sunsets will be seen from my verandah alone rather than the deck of a cruiser on the Rhine as part of a couple. Okay I could go on a cruise alone , walk on that beach alone, watch that sunset alone, I know that. Being alone is my speciality right now . I dodge loneliness by filling my life with a lot of busyness usually, that hasn't been possible recently because of the treatment after the operation and so alas once again my feelings have been able to ambush me. Hopefully I will be able to resume my busyness soon and feel stronger emotionally.
Is this a pity party for one? I suppose it is but it is also a melting moment, one of a string of them that will happen from time to time. As long as I get over it quickly I am okay, it is when the same thoughts hang around for a longer time that I am in trouble. In the blogs over the years I have seen a lot of pity parties, after all venting of thoughts, sad, angry, why-me etc is one of the purposes of blogging. Where possible I try to express an empathy with the poster, what a friend of mine would call a "feel sorry" moment. And I am sorry circumstances have changed making the poster sad, bad, mad etc. It is not comfortable to feel that way and in the long run not healthy.
As a former caregiver a lot of my friends look to me for comfort and advice. I feel that I am expected to be sympathetic and considerate. On one hand that is exactly what I do, try to comfort others, to make a difference, to help alleviate their pain. Acting in this way is part of my Christian upbringing, I was taught to treat people the way I would like to be treated. In another way I can see the value in allowing people to experience their own pain. I know the value of that myself but only in retrospect. I wish we do could get the wisdom without the pain.
It is unwise to assume we have the power to change the way people feel from the people in our own family to the person we talk to in the mall. The fact is that the stranger may be more willing to take our advice than those who know us well. Familiarity breeds contempt we were told. So our nearest and dearest may not be pleased by us giving our advice and even tell us so. I stopped hitting my head on that particular brick wall long ago. But there still remains the fact that when I need advice and we do all need advice at some stage I guess I just have to be wise in who I ask. And I need to remember that a lot of advice is well meaning even if it does not exactly fit the case and be glad the person who gives me the advice likes me enough to be there for me.
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.
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.
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.
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.
It is a little hard to write this blog for many reasons. One is that I don't have a working computer and am typing this with one finger on a tablet, another is that I am not feeling good about life right now. I went for my four months check up today and by the way the radiologist spoke all is not well. So I go for more tests next week. I just hate it when a medical professional pats my hand and calls me "dear" as that usually means there are problems ahead.
I had a good Christmas with five of my grandchildren together with my daughter, son-in-law, his brother and mother, my fomer daughter-in-law and several others together for what turned into a real feast. I had seen Trevor and Alice a couple of weeks before so although they were not with us they were by no means forgotten. I miss Ray at every family event but I know Craig's mum was also missing her Don so felt somewhat for her too. It was good to be in lively company and enjoy family time.
I think in a way as time goes by I miss Ray more when our families get together. I understand now why some families put out an empty chair at special family events as it fllllelt to me as if there should have been an acknowledgement that the two grandfathers were missing. I think Craig's mum felt that way too. It seems sometimes as if part of me is missing and it makes happiness seem like something that used to happen rather than something that happens now.
Is life still good? Yes it is. My word for this year is NEW and that is because it is NEW every morning, and whatever is happening in my life I want to go on feeling that way. I mean to turn what could seem scary into something exciting. I want to go on enjoying life. Today may have been scary in a way but tomorrow the sky may be blue and good news of some sort may brighten my day.
I don't know how far ahead I can plan life but I still need to make the most of this summer. I have plenty of gardening to do, the elephant still needs painting, and there is so much to do in the house. I have friends to see locally and further afield so I need to go on enjoying what I can. The diagnosis may not be as bad as I am thinking right now. Time to put my Big Girl pants on and keep on going.
I know a lot of people are much worse of than I am and really at 70 I have plenty of good memories to look back on so why am I worrying? I guess because I am human, and will always love life and want to live with health and wellness . But if that is not the next part of the journey so be it.
Seems as if time has flown since I last blogged and now we are just a few days short of Christmas, so only one thing to do. Wish you all the best for the days ahead, a peaceful and joyous time with family and friends. May the year ahead be one of progress and new opportunities. Bless you in all you do.
It was the WAGS Christmas party today, my second favorite party. I missed a couple of parties last weekend as I was out at Broken Hill with my younger son Trevor. I wanted to be there that weekend as it was his birthday on Monday 27th. As he is a long way away from friends and family he loves it when I can be there and it was his access time to his five year old Alice too so we had a ball. We took Alice to Playtime at the local Salvation Army, to please her we went to see the movie "My Little Pony", he got tickets for us all to go to a small circus, we went swimming in the local pool and did a lot of reading books, playing games etc all at five year old level. I really enjoyed my time out there away from the humidity of the coast. One of the highlights was a freak rain event, high winds and flooding rain for about ten minutes, then gentle rain for another twenty minutes and it was all over. The rain water drains quickly into the red desert soil so the effect is very short lasting.
The highlight of the WAGS Christmas party for me is the dancing. I sat with one of my long term friends an ex-nurse called Robyn who had a slight stroke eight years ago. She deals with life bravely and I do admire her, she is a widow like me and occasionally we do things together. She has a small farm and has cows and calves, she came today from trying to help a neighbour with a young cow who was calving and unfortunately the cow died as did the calf so she was quite sad when she arrived at the party. One of the things we do every year is dance with Robin, who is in his mid-fifties has had a stroke leaving him with a useless hand and a leg in a brace. Robin loves to dance so we get him on the dance floor and dance around him. The smile on his face goes from ear to ear and the other men say: "Good on you mate, two lovely ladies to dance with." and the grin widens. It has become part of the ritual so I will hate it when he can no longer get up on the dance floor.
Each year we lose people from the group as we do from this site, some because the stroke damage is magnified by the ageing process and they no longer have the stamina, some because they take up new interests and have clashing demands on their time and some just stop contacting and we don't know what has happened to them. It is sad to make friends and then lose them as the years pass. But it is always fun and we find a lot to laugh at, in fact we were making so much noise today that a couple of others came over to see what the hilarity was about. One of the younger women at our table wore a dress that was too low so she cut out a V piece from a gold Christmas card and tucked it into the top of her dress. We all got so much fun out of the ensuing adjustments with all the women contributing their advice that we were almost hysterical with laughter. She is both a stroke survivor and a cancer survivor with a lovely and loving personality so took it all as a compliment which of course it was as well as an accolade to the person she is.
I am blessed with my friends. Some I have had for a long time, since I was in primary school, some are more recent. I appreciate them for the gifts they bring into my life, for the love and laughter, support and care they show towards me. A couple of women who had battled cancer came over to talk to me about the tests I have this month to see the specialist next month to find out if the melanoma has spread to other organs. They outlined some of their own battle with cancer and gave me encouragement in what I have to do. Both are caregivers so still have a stroke surviving partner to care for so I am blessed to not have to do that as well. I do look back on my life sometimes and see where I have come from and the strengths I have gained from those experiences so no doubt this is the same, I will meet people and learn new things because of what I am now and who I am now.
The Christmas party season is upon us, the Spring rains are finally here even though we declare it summer from the 1st of December it is still acting like September. We had to run for our cars through the rain this afternoon. I spent half an hour watering my neighbor's pot plants and garden this morning so now I feel as if that was time wasted. He will be away till after Christmas, he and his girlfriend/partner are spending Christmas with friends in Germany and having a week in England before they comes home so it is an ongoing process, looking after his house. He no longer has a cat so that is one problem I no longer have. I am selling raffle tickets in my local shopping centre once a week as my contribution to Lions fundraising, I don't mind as I often encounter people who are acquaintances or old neighbours that I have not seen for a long time and have time to catch up. And there is the other Lion I am on with to talk to. Many of our members are showing signs of ageing now and often have to ask customers to repeat details because of their hearing problems. It isn't embarrassing, it is just life.
My oldest grandson Christopher turns 18 next Friday so there is to be a family dinner with a few of his friends to celebrate the occasion. It is another milestone. My daughter told her Dad when he had his strokes in Bendigo in 1999 : "You have to get better Dad, you are going to be a grandfather." And happily he lived to see all of his six grandchildren, although only the first three months of Alice's life so she doesn't remember him. Life is always that mixture of happy and sad isn't it?
I have just been on the WAGS Women's Weekend. I can say we laughed and cried, told of our journey, played silly games, ate together, played together and danced with wild abandon on Saturday night and had so much fun. The pink boa in the photo is a tribute to Terry who was her daughter's caregiver and sadly died this year. I was sad, as we all were, to recall those who were not with us for so many reasons. I have been going to this weekend since 2007, some years I have only gone on the Saturday night, some I have gone for the whole weekend as i did this weekend. Each year is different with unexpected events living in our memories. Sometimes the caregiver is called home as something has happened to the survivor, some years there is a family crisis of another kind, this year one of our ladies became ill and had to go home to recuperate.
I have watched them age and they have done the same with me. They supported me during my recent recovery after the melanoma operation as they supported me after Ray died. They are caring women and I love them all. We are not the same, but we are all on the stroke journey. I am no longer a caregiver but I can still encourage them in their caregiving roles. Life for all of us is influenced by the stroke event. There is no "them and us" we realise we are all in this together and the more we support each other the stronger we become. We are not noticeably caregivers and survivors but all strong and supportive women. It is incredible what we have shared over those last ten years since I have been involved with them.
This year I roomed with another widow, our stories are very different but we both know the meaning of loss and grief. We both know how to scope with whatever life dishes up to us now. We both have had our moments of fear, anger and feeling we were losing it. We talked almost right through the first 24 hours, I guess we both needed to unburden to someone who knew what we had gone through going from caregiver to widow. We know there are things you can tell another widow that your friends who are members of a couple will not understand. It was a good experience for me. Of course I also talked to a lot of others there, some I only rarely see. One of the girls who has only joined us a couple of times after becoming a member several years ago said she was so proud to say she had been away on a weekend with 20 of her best friends, I think we all felt the same way.
Apart from that life goes on much the same as usual for November, church, social days, nursing home visits,meetings etc. I did a hospital visit today. It was my turn to be "treasurer" at the Lions Club BBQ this morning, tomorrow I am selling tickets in our local shopping centre (mall) in our Lions Club Christmas Stocking. There is planning to do for the Christmas gatherings and I'm looking out the Christmas cards to send as not everyone is on Facebook or email particularly older friends. I guess it is the same for most people. We are making up Christmas hampers at church for those who are less fortunate and still going on with the weekly services and other events. I am visiting my daughter for a few days next week. Always good to spend some time with my families.
My left leg is still painful sometimes, mostly when I spend too much time on my feet. Of course now we have humid days now it is getting closer to summer too and that doesn't help as my leg swells. I may have to go to a local Lymphodema Clinic to find out more about that. My friends remind me that it takes time to heal, I know that but am impatient to get back to full fitness again. It was a joy to find I can still dance but because of muscle damage cannot spin around successfully so I am doing slower moves. Who cares as long as I can dance in time to the music? It is such a blessing to be able to do almost all that I could do before. Of course my age slows me down somewhat but I can laugh at the mistakes i make and my inabilities as well as my absurdities hopefully make my friends laugh too. As the song says: "Be a clown, be a clown, all the world loves a clown."
Today I went to the Stroke Recovery group WAGS that Ray and I used to go to, I don't always attend the monthly meetings and today one of the members came late and slipped into the seat beside me and said: "I am so glad you are here today I take so much strength from you." This girl has just been diagnosed with a recurrence of cancer so I know she is going through a bad time. She always seems happy but I know it is not always as it seems and she is struggling. We have had long talks from time to time so know she finds it hard sometimes to make sense of life, she has had a stroke and now her cancer is back. It must seems very unfair to her.
She has visited me several times during my convalescence and we have had some good conversations so I hope that has helped. She brings her small dog Daisy and I enjoy Daisy's visit too, she is a happy little dog. I wrote years back in one of my blogs : " Who cares for the caregiver?'' and the answer depends on what you are looking for. For me in the last eight weeks after the operation my help has come from friends, my church group and members of the Stroke Recovery Group, caregivers and stroke survivors alike, have all been thoughtful and contributed in some way to my well being. From many the flowers and cards were so lovely and some of the less mobile people phoned me as well. It is another example of “if you want something done ask a busy person” as all of those who helped me ARE busy people, but they are also generous people with good hearts.
I know now if you have been a caregiver you will go on being so in some way. With long term caregivers who lose their partner once past the grief you will find ways of making a contribution in your own way. I am a born volunteer so it was not hard to find an outlet for my caring instincts. The pastoral care work in the church is one outlet for this, the nursing homes visits another. I have the Lions Club projects like the BBQs and other fundraisers to help with too. But you don't have to make a formal commitment or join an organisation to be a caring person, that person on the bus seat might need a listening ear and that young woman with the baby might need some motherly advice or just someone to admire her baby. Opportunity is not something you need to seek, it simply comes your way and you can use it.
Every few months I sit around and have a "woe is me day" a day when I wonder what life is all about, what I am doing with my life etc. This is not as often as when I was first widowed but the triggers are always there to set me off. This week I got a couple of nice compliments and that helped me see life from a different perspective. One was in one of the nursing homes I visit, one of the nurses told me she loves it when I visit one of the people there as "it really brightens her up". I love to visit my ladies but sometimes it is just another chore so it is nice to hear it is appreciated. There is always bad news to make us feel sad, I went to another funeral this week,which is hard when it is an old friend of many years standing. So some good news or having someone pay me a nice compliment can help make my day and make what I do seem worthwhile again.
I know from Ray's time in a nursing home that some people have very few visitors and so a visit from someone like me fills a gap. It is sad in a way but the life that we lead in our old age is often sad. Once you go into a nursing home so much of your old life has to be left behind and it is hard to see a good future ahead of you An old friend of mine who is going blind has recently moved out of her home of many years and into a nursing home. She said to me yesterday: "I wonder what there is left to live for." and I understand that statement. She knew she was no longer coping living alone, even with help so she made the decision herself. She is in her mid-90s. She said her daughter is good to her and visits frequently and that makes her happy. She has settled into her new environment but still misses her old home very much.
I enjoyed my time at the Stroke Recovery group meeting today. It is only a week now until our WAGS Women's Weekend so most of the women were talking about that. We had a Podiatrist as guest speaker and he explained how a good orthotic in the form of a shoe insert can correct gait. Unfortunately it is all very expensive but I wished that those sort of orthotics had been available when Ray was first relearning to walk as I could see they might have helped keep his left foot straighter. Walking was always a struggle for him and he had so many falls, some of them requiring hospitalisation. The AFO helped to counteract the foot drop but maybe with an orthotic shoe insert as well he might have had less of a struggle. It is all academic now after all it is five years since he passed away. But we can't help thinking of what might have been.
November is always a busy month for me and my calendar is full of squiggled reminders of where I have to be on what days. I can be a bit muddle headed with all the activity so strive to remember if I have to take a cake, or give a talk, or arrive early to set up in all the places I have to go. It is the start of the Lions Club Christmas Stocking ticket sales on the 13th and of course all the usual activities plus a few end-of-year activities so I have to keep an eye on my diary. Am I pleased to be doing all of this, yes I believe I am. I have had a health scare and the repercussions of that will last a while but life has to go on and I have to be able to enjoy it. I seem to be walking better now, I walked down a set of steep stairs with ease today so the muscles are starting to build up again. I may not be the Dancing Diva this year at the Women's Weekend but I do intent to enjoy myself.
I was talking to the church secretary today about the operation, my recovery and why I see life differently now. I have filled in a series of forms to continue as a Lay Minister in my church but still have some misgivings about going back to doing all the work I was dong prior to the melanoma diagnosis. An operation of any kind is a watershed, a time when once again we are brought up against our own vulnerability. It has certainly been that way for me. I hear of a lot of people who have had the same thing and made a full recovery and others who have had a serious operation and then developed more melanomas or other forms of cancer that have finalised their lives. It reminds me of the same kind of stories we were regaled with when Ray had the strokes, someone's brother-in-law always had a miraculous recovery or someone's father-in-law had a similar stroke and it was the end of him!
I am counting my blessings chief of which is the many friends I have accumulated over the years. Some of course drifted away after Ray stroked and we both left work, me to look after him. Some of our then friends drifted away after he died but I now have some that I can identify as my friends. There are the widows some of them former caregivers like me, the old friends from the groups I belonged to while we were on the stroke journey and some from my past who have slowly appeared back in my life. Of course I do have more time to get out and about now so it is easier to meet up with people locally. I am that older lady sitting drinking coffee with a friend or friends in the middle section of the food hall in Bateau Bay Square. It is easy for me to do that it is only about ten minutes drive from home.. But we all know that freedom comes at a price, I have freedom but I also have loneliness. That feeling that when I come inside and shut the door there is only me here. And on the days I don't go out there is a chance that I will speak to no-one all day, the cross a widow has to bear. But at least I am able to drive and get about more now.
I have a greater respect for the people I meet who have leg ulcers or something similar that keeps them bed-bound and for all of those older ladies and gentlemen who I have visited in nursing homes over the years who never go out any more. I guess there are certain experiences you have to have to feel the impact of them. This is just one more to add to my list. It is a hard way to do it though. I now often hesitate to answer posts by stroke survivors as I can't say I know how they feel, I don't. I still answer some posts by caregivers but my experience is fading now and I still see the big picture but the minutae of every day living with a stroke survivor that is blurring now into an overview of what it felt like to be too busy, not have time to think, have too few moments to myself. I can still write to other caregivers about that. I am still welcome in my real time Stroke Recovery group not so much for what I say or what I share but for the fact that I have time to listen and sometimes that is all someone needs - to feel they have been heard.
We all live in a world of minor tragedies, all around us people have serious illnesses, old people die, younger people lose their jobs or their homes, suffer financial problems, divorces etc. I went to a funeral on Tuesday and met up with two ladies I had not seen for ten years or more. In an hour or so of sitting together over afternoon tea we tried to catch up on all the news of family and friends. I came home a little shell shocked as of course it was births, deaths and marriages, scandals and "shocking" news. I guess if I'd kept in closer touch I would have heard it all anyway but I would have had time to accustom myself to events that I could not do in an hour, so that had a real impact. We swore to see each other soon and maybe we will and maybe we won't but it was nice to catch up. Some of my "lost" friends I really miss as we were friends at certain significant periods in each others' lives. We were young Mums together, or worked together, were in the background in the Scouting movement or one of the many organisations Ray and I belonged to over any years.Now when I am alone more than ever I hark back to the good times in my life and those special people I shared them with. I would like to catch up with some of them and see if they still remember, before it is too late and we all have dementia...lol.
I am back into gardening, we have had a little rain and I have supplemented it with my watering can. I have tomato plants blooming, herbs almost big enough to pick and some seedlings I have just planted out. Unfortunately I have not been able to dig over an area I hoped to plant out this year so it will be a next Spring job. I have learned over the five years since Ray died that I cannot do all the work he and I used to do together. Prior to his strokes he was the back yard man I did the work on the inside of the house. Outside I was the gardener but he dug the holes, he kept the lawns nice and did the edging. I do have a lawn mowing man, have had a string of them since 1999 when Ray had the major strokes, they do the mowing and the edging but there is still a lot left for me to do. Since the operation that has been neglected so there is a lot to do before the heat of summer comes and dries everything out . I am still tired more quickly so am pacing myself and not worrying too much ( well I am worrying but trying not to if you know what I mean).
The way my thinking has changed is that I try to stay in the moment more. I am trying not to think about the future but enjoy the present. I am not sure what the future holds but know that the years fly so fast at my age it probably doesn't matter that much now. Christmas is coming, the decorations are appearing in the shops, the toy sections expanding, the cash registers starting to ring with the grandparent sales, we always used to start our shopping in October when the grandchildren were small now it is just money in a card except for Alice the five year old who still enjoys toys. And I no longer have a Christmas list. The things I need you cannot put in a Christmas stocking. I need peace, not peace on earth, although that would be nice, but personal peace. I need love, the love of family and good friends and I need joy, the joy that makes living worth while. My word for this year has been "ENJOY" I haven't a word for next year yet but it will have to be a practical one. Maybe during the run up to Christmas I will find an appropriate one. It is good to be able to think a little way ahead but I am thinking that there may be a lot of changes in my way of life , I hope I will be able to deal with them.
Some of my friends are still flitting around Australia or around the world. I no longer envy them, without a partner to enjoy travelling with my travelling is to visit family and friends. I still remember the Hawaii trip to meet up with Sarah, that was a special highlight of 2017 for me. There have been the short stays with my daughter and her family and the trips I have taken out to Broken Hill to visit Trevor and Alice to remember with a smile too. I will do another trip to Broken Hill before Christmas. I don't plan to do any new activities, swimming is out for this season except for maybe a walk in the surf. It would not be good to go out and get myself knocked around in rough surf conditions so maybe a visit to a friend's pool will suffice. I need to take some "me time", thinking time. I have told so many people to do that over the years on here. And caregivers still need that reminder from time to time. A moment or two to put down the burden of care so many of them carry. I just have to take time to make sure my ideas are maturing. I've always said that everyone plans for retirement, no-one plans for old age, maybe it is time for me to do just that.
After six weeks of convalescence, seven weeks since the operation I am finally out and about again. As the surgeon said might happen I do have some swelling in my left leg if I stay on it too long but at least I can drive somewhere, walk around for a while and then rest, which means I can do my own shopping, meet a friend for coffee or go to church again. I really do empathise now with people who do not have that ability to get around. It is not a good life for someone who has been active, I guess I could live that way if I had to. I have greater empathy for all those I meet in nursing homes with restricted mobility too.
Do you have “Piecrust friends”? I now know I do. I adopted this expression for those friends who ring me and say “We must do lunch.” or “ I'll come and get you one of these days and we'll go for a drive” or “How would you like to go out one day soon?” and then never follow up on it. That has happened to me quite a bit during my convalescence. I use the term piecrust from an old saying of my Dad's: “Promises are like piecrusts, made to be broken.” Maybe they didn't think of what they said as a promise just some happy thought? But for me isolated at home they seemed like a ray of hope and then turned into broken promises.
I have just sent out 18 thank you cards, to the people who did contact me by phone or email, those who sent me cards and letters, brought flowers or meals and supported me in my time of need. I had a lot of texts on my mobile (cell) even when I was in hospital and it made a lot of difference to the way I felt about life. I don't have Facebook on my phone but found a lot of wishes for my recovery on Facebook when I got home. I do so appreciate the thoughtfulness of those who express care and support when I really feel alone, one of the downsides of being a widow. And even now I still have those fair weather friends who assume all is well and never bother to get in touch except for a Christmas card.
I don't get a lot of letters now, letter writing seems to have gone out of fashion but I usually write some letters this time of the year updating our family news rather than send off a Christmas card with sad news. And there is always some bad news, we all suffer the loss of old friends, people no longer the couple as we used to know through ill health and other sad events. September/October here is the peak time for deaths and for births, I always enjoy seeing my friends post pictures of their latest grandchild or in some cases great grandchildren. My good news is that my grandson Christopher has just been elected school Captain for his final year of high school. We do five years of high school here and then it is work or University the following year. And I have just had a visit from my Adelaide grandchildren for a day so that is good too.
I have been signed off by the community nurses now. They have been wonderful coming three times a week to dress the wound. My graft is solid and although it will take many more months to look or feel anything like flesh it is considered “healed”. So I can walk about and drive and all would be well except I am so darned tired. I would say that the four weeks I sat down with my leg up contributed to that as I surely lost muscle in that time. Now I have to do a lot of upper body exercise as I am still in some pain and cannot really exercise my legs that much. I am hopeful of being allowed to swim when summer comes. I did have some help with housework during my convalescence which has been handy but I feel now it is time for me to get back to whatever the new normal turns out to be.
The weather has been changeable, most of last month was very cold at night but some days recently have been hot and humid already. It was wonderful that some of those were in the school's Spring break. My Adelaide grandchildren have been able to swim in the local pool, walking distance from the apartment their mother lives in now. The state of my garden is precarious as we haven't had much rain this Spring. There has been no sudden rush of Spring flowers unfortunately and although the orange tree blossomed it did not set fruit. The more common garden plants like geraniums seem to be flourishing but the ferns hate the dry and even the bromiliads are showing signs of stress with many trumpets browning off. I love my garden so hate to see this happening. It is a disaster for local farmers of course,while just a minor nuisance for me.
So now I need to slowly get back into life, for a while it may be a little restricted and probably less exciting than before. I am 70 so have lived a good long life, with many happy memories I just need to maybe slow down a bit. Everybody says they are pleased to see me back attending the organisations I belong to. But I do hope no-one is too disappointed if I do less in the church now. I really need to pace myself more but have no intention of putting everything aside as I love to be out among my pleasant acquaintances and friends again. I will just be less of a social butterfly. Of course our lives get busier from now on as we do the run down towards Christmas and there is much to do. I just need to remind myself that it isn't me who has to do it all.
Due to he surgery I had five weeks ago and the subsequent infection I have been unable to use the car for the past five weeks. I was told I could drive if I had an emergency but it was unwise to do so before the graft was in a stable state. So for the past five weeks it has been mostly spent sitting or laying with feet raised. Then on Friday the community nurse told me the graft was healing at last and here I am, almost able to resume the life I had prior to the surgery. I say almost as there will still be a lot of things I can't do, excess bending and stretching, swimming, staying on my feet for a long period of time, tackling large numbers of stairs among them. I hope to go to church tomorrow and to meetings next week. As long as I have the chance to stop and rest instead of constant activity I should be fine. I will go to the Lions BBQ on Monday week if I am fit enough by then as I am sure the other Lions will take my place when I need to stop for a while..
This has all been a learning curve for me. I do a lot of hospital visiting and I have over time visited a lot of ladies sitting with bandaged legs due to ulcers or skin grafts and not even thought about the patience that recovery requires. After all aren't they retired and have all the time in the world now? Well I will not be so thoughtless in future but see if I can provide puzzles, reading materials or something similar to help them pass the time, because time sure goes slowly when you have to have bed rest or sit in a chair most of the time. It is a temporary disability but often under resourced, the need for support overlooked. I have had a lot of people offer help but only a few have followed through and come for a visit, sent flowers or made regular phone calls. As usual it is the loving people from Ray's Stroke Recovery group, those people who have taken time out of their own busy schedules to keep in touch with me, who have had the most compassion. We as caregivers ourselves know what is required to care for others. I am so grateful to them.
My daughter Shirley and her husband and children came down to visit me for a couple of days this week. It was good to have company and time to spend with the grandchildren. Chris will lead his school council this coming year, a real honour and one with responsibilities so I heard all about that from him. My grand daughter and I spent an afternoon competing in simple games on the Nintendo Wii and giggling hopelessly when we made mistakes, as a teen she is usually a bit less enthusiastic for my company so I was glad of her response. My daughter and son-in-law did some cooking and it was great to sit down to meals with them. I do so miss the family life we once had and feel sometimes as a widow that I have little to offer in that respect. It does make a difference when Mum and Dad turns into just Mum, a woman on her own. I don't know why it should, it just does.
I have been lucky in that I have had some friends come for a visit or to pick me up to take me somewhere, without that I would have gone stir crazy. I am unaccustomed to being at home for any length of time and do not like the enforced leisure. It is quiet in the neighbourhood because despite the children being home from school on the Spring break families opposite and either side of me have been away for the week so it has been much quieter than usual. Having my grandchildren here made up for that. I sometimes complain that I don't see enough of them but have appreciated how in this time of my need Shirley has taken time out of her busy life to support me. I know she has so much to do to run a busy Salvation Army Corps but she has put that aside and has really been there for me. My boys have been in communication by phone so I have been well supported in that way. I do still miss them all living close by though, it is one of he downsides of living in a country where people are so mobile and can, for various reasons, move so far away.
One of the good things to come out of this is that I have been recontacted by some former friends I hadn't heard of for some time. It is part of the problem of them thinking: "good old Sue, she can always cope with whatever is thrown at her", so I think the thought that I have had an encounter with cancer, which of course melanoma is, has taken them aback and hence the contact. Sadly I have missed a couple of funerals of church members but there was nothing I could do about that. Life is what happens when we are busy making other plans - to quote John Lennon. Whatever happens the cycle of birth and death will go on. With that said a girlfriend/cousin I usually stay with in England rang me today to ask when I am coming back to England so maybe I will put another trip to England back on my wish list.
We always say that in this sort of situation we find out who our friends are but I don't think that is necessarily true in my case. At my age many of my older friends are no longer driving far from home so of course they can phone but not visit. It is some of the locals who have stepped up and made sure I am okay. I appreciate all they have done for me and hope not to return the favour but instead pay it forward as I am able to. We all need help from time to time so I am sure an opportunity will arise. I don't intend to go back to full time duties at the church or in the community until I am quite sure I have the stamina to tackle the tasks. I guess all of this whole process has been a bit of a shock to me but none of us are bullet proof, we have the stroke journey to convince us of that. I am hopeful given a few more months of recuperation to be able to say: "all's well that ends well."
On the 23rd of August my life took a dramatic turn. I had had a small mole behind my left knee, I had it checked out a couple of times over the years but it was assessed as harmless. Years went by with my time taken up as caregiver to Ray and then as a widow and I filled my life with busyness, trivial in itself but filling an otherwise empty life. I ignored the little spot as it grew bigger and suddenly I realised it had really changed and so I went to my GP who referred me to the local Skin Cancer and Skin Care Clinic. One of the doctors there took the large spot off under local anesthetic and sent it away for analysis. Four days later I was called back to the Skin Cancer Clinic and told I had appointments in one of the major Sydney hospitals to see a surgeon, one of the best in Australia in Melanoma surgery. So a couple of days later I was in there being checked out and the following day I was in hospital.
This time I did the right thing and called my daughter Shirley. She came down and took over, taking me down to the hospital, coming back home to get what I needed when the operation was scheduled for the next day. With the previous operation the surgery took an hour and I was sent home with dozens of stitches which I had to care for myself. The second operation, this time to make a large margin around the original site and to do a skin graft took much longer and was followed by six days of bed rest, antibiotics and all kinds of care. I finally came home last Wednesday. To say I was shaken by all of this is an understatement. I had been avoiding doctors and the medical merry-go-round having had so much of it in the years I looked after Ray and now I have a ticket to ride in my own name. I had always considered myself healthy and then this small part of me proved otherwise.
Dear caregivers, let me be a warning to you, do not neglect your own health while caring for a loved one, your life is important too. Have all your health checks as they need to be done. Believe me the pain of not doing so is not worth it. I will be three weeks not able to drive because of the site of the graft behind my left knee and then 6-8 weeks before I can resume normal activities. That is a lot of things to be eliminated from my usually busy life and it has given me a lot of time to think about what I need to do, not just for now but into the future. I have to return to the hospital in four months time and have four monthly reviews for two years to eliminate any other occurrences and check the activities of nearby lymph nodes. It will be a long time to clear me of future happenings and then of course like the general community I could still have other health problems.
I am glad to be home and back on my computer thanks to my daughter Shirley who has set me up well with space to put my feet up as instructed. She has improvised a tray table and a laptop connection. So I will able to be in contact with friends via my computer, landline and mobile so hope to return all the good wishes that have been sent to me. It is a blow that I am not allowed to drive for a while but there will be plenty of handicraft to keep me busy. And plenty of books to read too. Thanks to all those who contacted me via Facebook and sent me their prayers and best wishes. A dear friend from my Stroke Recovery group has taken to bringing me meals and others from the group have sent flowers and cards, rang me or dropped by. I am so pleased to be supported by so many strong women who already have their hands full caring for another loved person in their lives. They are a good example of the saying : "If you want something done ask a busy person" and I didn't even have to ask, they knew what was needed.
My boys have been supporting me by phone and text, they are both too far away to help but they have also been in contact with Shirley to support her too. Trevor of course wanted me to go straight to Broken Hill where he said he would take me to the local hospital to have my dressing changed etc but really at this stage even the couple of hours sitting on a plane would do me in. I do have some help coming too as a domestic worker will come twice a week to do housework and a community nurse will come three times a week to dress the wounds, essential with a graft that has to be monitored. I will give up wearing knee length shorts and find a suitable longer pant to cover where the graft was through the summer months. Swimming will be okay as long as I cover up as soon as I return to the beach. Dancing as an exercise has to be postponed until full healing takes place so I will hand over my Dancing Diva trophy at the next Women's Weekend in November.
As usual the lesson learned was that so many people are worse off than we are but still we do have to be vigilant about our own health. Not fair to burden our kids more than we need to. I have tried to maintain my independence but this episode was a reminder that I am ageing, over 70 now, and I need to be mindful of what is ahead of me. My daughter said she will bring her two teenage children down in the next school holiday which is only three weeks away and they will help me with the sorting out and decluttering. I still have books and toys left over from their own growing up years and they will have a better idea of how much of that I need to keep for Alice and Shirley and I will go through drawers and cupboards. I have been given a reminder of my own mortality and i need to take heed of that and have some contingency plans in place.
Of course this is not the end of my life, just a reminder that there is an end and this may have been a lucky escape caught just in time or it may not. I have my faith and my church and I have so many good friends, interesting acquaintances and well wishers to keep me going. The 8th of September would have been Ray's 75th birthday and I got a bit sad and wistful then, thinking how different it would have been if he had been with me, alive and well. But if he had been an invalid and depended on me still that would have been an entirely different scenario. As it is I only have myself to take care of and intend from now on to do a better job of it.