If no news was good news life would be so wonderful. I have paperwork in for both operations in two different Sydney hospitals now with a pre-admission interview on the 11th for the aneurysm clipping operation. I know you all know the importance of this operation as it will save me having a stroke, at least that is the way I am choosing to look at it. With a good surgeon and a lot of prayers it should be fine. I am not looking forward to it but I am no longer afraid of it.
We have just had the first really cold days for the start of winter, record snowfalls for May in some of our little towns near the Southern Alps. It is time to turn out the cupboards and find the winter woollies. I might need to get out scarves and gloves too if yesterday was anything to go by. I will probably need to look out bedsocks and shawls to wear during my convalescence. Not counting on anything at the moment as I will find out more details at the next couple of meetings. Anyway no harm in getting ready for whatever the future holds.
I am not as active since my last hospitalisation for the infection in my affected leg, it seems like my lymphoedema increased in my affected leg so that seems more log-like than before. I am also conscious that I walk differently now swinging my left leg more slowly than my right and I am doing shorter distances too. It is nuisance more than anything but does affect my confidence. I find stairs are a challenge too and I am mostly walking down them sideways with my back to the rails. A bit awkward but hey! I am still on my feet and that is the main thing.
Apart from that there is still a lot to enjoy in my life, morning tea or lunch out with various members of my widow friends groups, church meetings, craft, Lions and other activities. I like a variety of things to do and mostly enjoy some activity each day. I am more tired than I used to be, after 2.30pm I find myself wanting to head for home or find somewhere to sit with my legs propped up. This has been coming on slowly but I certainly know the difference that losing the lymph nodes made to my overall health and wellbeing. I have finally got rid of the chest infection, had it for almost four weeks. I am sleeping better now.
The short days means I try to fit gardening in after lunch. There is not a lot to do except keeping things tidy but with no rain for four weeks I have been watering a couple of hours each week. I had three different chrysanthemums flower just before Mother's Day which was a surprise. Shirley and family came down for Mother's Day lunch and and brought me another chrysanthemum which can be potted up once the flowering is over. I also have five different bromiliads in bloom so that was a beautiful surprise too. I have always enjoyed pottering in the garden. The herbs are finished though, I will renew them in Spring.
I am not sure how the next few months will go, Trev would love me to go out to Broken Hill to stay with him for a week as I usually do at this time, last year I was there for my birthday, but I can't go anywhere right now. I am glad Ray can't see me like this. I still "see" him here in my mind's eye. Funny how that happens for a long time after they have gone. Those 44 years were the major part of my life. Despite my efforts to live a full and satisfying life the loneliness is still a major factor. No way to overcome that.
So that is my whinge for today. Not exactly a pity party, just a blog about the uncertainty of my present life.
I had five days in hospital and got home late Friday afternoon. It was so good to be home. I went to hospital because I got cellulitis in my melanoma affected leg. It was my own fault, I scratched an insect bite and set up a bacterial reaction. Without the protection of lymph nodes to fight off the infection spread and on Monday I realised I was in trouble. I consulted my doctor and then rang the Melanoma clinic and following their advice finished up in the local hospital. Needless to say that was the right solution as I needed intravenous antibiotics urgently.
Being in hospital again reminded me how fragile life is. I was in a four bed room and each lady had a story to tell, some sad, some of hard times, all linked to a series of health problems. With daily turnover I probably spoke to ten women in all. I am always astounded that we assume we are all so different from others until we are sick and then suddenly find we have much in common. I hate hospital, with its bad food, almost impossible sleeping conditions and insufficient staff but that was the place I needed to be to get well. I am so happy to be home though and it is great to sleep in my own bed again.
It was Mother's Day today. I did the usual picking up an older lady for church, then after I had dropped her off I came straight home. I am still not at full strength so didn't want to risk shopping today. About 1 pm Shirley and family arrived bringing chicken and salads for lunch. It was so good to be together again. They only stayed a few hours but it was great to catch upon the grandkids news and what Craig is doing in his job. Shirley visited me in hospital last Tuesday so I knew what she is doing. I loved having them but was tired when they left to go home.
A week spent mostly in bed has zapped my strength so now I need to build myself a routine with more walking and spend some time doing exercises on the Wii. Not allowed to do anything strenuous until all is back to normal, or what passes for normal these days. I am feeling my age now, sort of lost my bounce. I am not complaining, I am as well as I can be but I have to make an effort to get stronger before I have the next operation. And that is going to take an effort on my part.
The garden looks well after the rain and I need to trim a few of the smaller shrubs. It is good to be able to get out into the sun for a while now it is cooler. I really miss the long days of daylight saving, it seems that it is almost dark by 5pm now. The garden looks good as my lawn mowing man was here last week. It is just as well I have someone reliable to do it. It is better to think about the cost as just a normal budget item. And appreciate a job well done.
Apart from that we are in the middle of the lead up to our Federal elections, polling next weekend so all politics on TV and social media. I think I will read and watch old movies for the week. I can always find something to do. As soon as I feel strong enough I will return to my usual routine, weather permitting of course. Looking forward to that.
It is always hard to wave goodbye to Trevor and Alice. They live so far away and with all my medical woes I won't be going out to Broken Hill for a while. But we had a good week, no big dramas with Alice settling in. Not as much time together as usual as they went down to Sydney for two full days, one to Taronga Zoo and one to the Royal Easter Show where they met up with the cousins, Tori, Alex and Oliver. Alice is very close to Oliver who treats her as his little sister so she follows him around as much as she can.
We had a visit from Shirley, Chris and Naomi on Monday, Shirley said it was great as Alice really talked to her this time. We had lunch out and the day just flew by. Chris is doing Biomedical Science at University now. He wants to do research. When he was much younger after Ray had had yet another stroke he asked me: " Granma why can't the doctors fix Pa?" I told him that we don't know all there is to know about stroke and he said: "When I grow up I will find out." So maybe that is still in his subconscious mind.
No news on when I am having either operation. 2 - 3 months seems to be the normal waiting time for a hospital bed now. I am not worried as I am sure the surgery will be done eventually. I find that just going on with my regular routine is the best way for me to keep busy and not fuss. I got used to the one-day-at-a-time routine when I was a caregiver for Ray so it is not new to me. Unfortunately it does mean I can't do any forward planning but that is not new either.
The summer heat has gone now, we still have the occasional hot and humid day but they are not the average day. The days are quite pleasant now. I am in the middle of repotting plants and cleaning the gardens up for winter. I know that with either operation I won't be able to do heavy lifting so I will do as much as I can now. I am enjoying being outside more although now we are off daylight saving the days seem much shorter. I am always glad when the humidity drops, it makes life much more enjoyable for me.
I have been to a couple of funerals in the past month. It is because all of the groups I belong to have members much older than me. I don't think that is a bad thing as some of them have mentored me over the years. Some of them were my best supporters when I was looking after Ray. I have been in my Lions Club for twenty years in November so have watched the members I started with get older and frailer, but that is life isn't it? I guess the younger members think the same about me.
I guess some of you have noticed I am no longer Hostsue, I am now swilkinson. I am still officially the Blog Moderator and still occasionally comment on posts so I am still involved. I still have a lot of people from this site on my Facebook page so I am still interested in what is going on in the lives of the wonderful friends I have made here. And I still pray for those who ask for prayer. Thanks to all who do the same for me.
I went to the throat specialist, he said the thyroid operation was the way to go but probably the right side of the thyroid removed would be sufficient. I don't know how I feel about that. Anyway I agreed and now await an operation date, probably in May. He also asked me if I wanted to have the brain aneurysm surgery first but as the thyroid is the lesser recovery time I said let's do it first. This may be the wrong decision but I hope not. I really miss having someone else who can help me make decisions now as my family say: " It is your decision Mum."
The weather has suddenly got colder, last night was a cold snap bringing a dusting of snow to the Snowy Mountains and the cold winds came north to us. Then today it rained and I spent my gardening time rearranging my autumn wardrobe. I have a lot of clothes available, I just keep recycling them every year. Some of my clothes must be almost vintage now. I come from the mix and match separates era so it is a matter of matching blouses to jackets to skirts or pants to shoes etc. Of course the thick stockings I am wearing will be less obvious in winter which is a bonus.
I had a enjoyable week out west in an area called the New England District going out by train to go to a friend's 70th birthday party. Another couple stayed with him too, old friends from way back so it was a time of reminding each other of shared events and the fun times we had. Of course that would once have included Ray which made me a little sad. I guess you never get over a loss, just spend less time thinking about it. Those 44 years together will always be a background to whatever is happening to me now.
The next event will be Trevor and Alice coming here for the school holidays towards the end of April. While they are here they hope to go to the Royal Easter Show in Sydney, to Taronga Zoo and possibly the Australian Reptile Park so I shall hardly see them. I love having them here and of course it means having the other grandkids visit too and mayhem all round. For a week it is great fun. Of course Christopher is in University now so I will probably just have Naomi visit this holiday. Life changes all the time doesn't it?
When I came back from my inland visit I had the house lights fuse, seems some of the house wiring may need replacing. Actually I need it all reviewed now. That is one of the problems with a house like this that has been built onto a few times, you forget how old some of it is, the original three rooms having been built in 1959! We bought it in late '60s and as our family grew more had to be added onto it to accommodate us. I sure miss Ray for that too, where is my lovely handyman husband now when I need him?
Life somehow is always a mix of happy and sad for me. I hate being a widow. I loved being a member of a couple, it always felt safe to me. Not that Ray and I were the perfect couple but someway or another we always managed to compromise. A new friend said to me: " Sounds like you were always fighting." but it wasn't like that. And of course there were all the years of me looking after him but I always included him in the decision making as much as I could. That is what a true partnership is about.
This is a blog about the way life is as I live it now, I have some freedom but it comes at a price. That price is loneliness. There are certain advantages, like I sleep at night without that voice calling: "Sue can you help me?" I still sometimes dream that. I miss Ray. And life is not as good without him. End of story.
I was diagnosed with thyroid cancer this morning, my melanoma specialist Prof Saw will find me a throat specialist who can see me locally but who operates in one of the Sydney hospitals. Then the throat specialist will liaise with the neurosurgeon who wants to operate now on my brain aneurysm to see who gets to operate first. Not a good day.
I wrote that to a few friends yesterday. I was in shock, I had gone to the doctor to discuss some options and he read out the biopsy report and there it was, the biopsy had shown a tumor in the node that had doubled in size. A bit of a surprise as the last report a year ago had said the nodes were all benign. But my mother had had her thyroid out in her fifties so I guess it is familial. Dash it all. Another operation to endure. I know it is my age, for some of us reaching 70 is one bridge too far.
So it is a waiting game again. I will hear from the melanoma specialist again with the information on the throat specialist, he or she will get in touch with me, maybe get some more tests done and then book me in for an operation. It would be nice if I had a choice but I don't. Remember I had the other operations in order to see my grandkids grow up? I guess the same applies.
The aneurysm in the brain operation is more serious of course, no laughing that one away. But an aneurysm is a small unexploded brain bomb and it is either get it tied off or live with the uncertainty of when or where it will detonate and blow. That is indeed a dilemma. So I will have to screw up my courage for that one. It is a pity somone else couldn't make the decision for me but I am still in my right mind so the decision is all mine.
So how do I feel? Not confident that I have a future. I say that knowing the side effects of both operations, the downside of doing hospital chaplaincy. Some people come through operations so well, recovering fully, some people don't. Either way it is a long recovery and life will be different to what it is now. But that is the good news in what may be an end-of-life experience. I say that because one of my younger friends (58) from my stroke recovery group died this week after two massive bleeds, one on the left side of the brain one on the right side. Life is uncertain.
Where does my Christian faith come into all of this? I don't know. I have always known life was uncertain, I was a caregiver for all those years and watched Ray have strokes, falls, fits and seizures. I saw how very brave he was and how he struggled back each time. I want to be as brave and determined as he was. I want to go into the operations knowing that things can go wrong but be brave enough to be able to take that chance. That is what living by faith is all about.
So if I write a few down blogs or put comments on Facebook that don't sound like my normal cheerful self you will know why. The rain falls on the just and the unjust alike so don't feel sorry for me or worry about me. But do keep prayers and positive thoughts in your mind for me for the next couple of months as I deal with some of these awkward decisions. And help me to keep smiling when there is not a lot to smile about please.
I have a lot to be thankful for. My daughter Shirley took me to see the specialist in Sydney today. Luckily the heat of yesterday was replaced by drizzly rain but as usual that just made the traffic worse and so our two hour journey took half an hour longer. I know why I love my part of the coast so much, it is because I would much rather listen to the sound of waves rolling in to shore than the sound of squealing brakes and the horns of impatient drivers. Or park by the lake instead of trying to find a parking spot among the high rise city buildings.
I have several tasks to do when I get there. I filled in the research paper I usually do on my post operation feelings which becomes part of a national survey, then I was interviewed by one of the associates which is part of their training and then I can see the Professor herself. It seems there is not any sign of further melanomas, no signs of secondaries. I do have some age related problems which the young doctor explained but these can be seen to one at a time. I don't have to see the specialist again for twelve months pending two more tests to come, one a biopsy and in March there is the brain scan and the visit to the neurosurgeon.
I am so grateful for everyone's prayers. It was a tiring day but just to know I have passed the first year without a recurrence of the melanoma and no secondary sites is a great relief. I still will have some residual pain from nerves damaged during the operation but that is a small price to pay. I have been given another year and will make the most of it. My word for this year is enjoy and so far there have been few days I haven't enjoyed. My life may be shortened by this past year's troubles but it is still a good life.
The week leading up to today was busy with all the tests but even then it was an interesting week. After one of the tests a woman friend picked me up and we went to lunch, a thoughtful gesture on her part. I am blessed with good friends. I don't have family close but Shirley is only and hour and a half away. I also had lunch out with my ex-daughter-in-law and caught up with her news. She is the mother of my grandchildren who live in Adelaide with my son and his new partner.
I am lonely still, really no getting around that. I have plenty to keep me busy, I have friends locally I can connect with as I do, but when Ray died the centre went out of my world. But we widows and widowers just have to rebuild our lives and I have done that. Like any rebuild it includes things from the past as well as relationships which are more recent. The friends I have now are from different parts of my journey. It is inevitable that relationships change when your partner's dies and some friends drift away and new friends take their place. And of course at my age many older friends die.
It was nice to have my daughter stay overnight and to and from Sydney we talk of so many things. She told me she now uses a lot of the sayings she heard from me and her father and her kids say: "where did that come from?" It is good to have a laugh together. I know she is busy and am glad she feels she can spend the time with me. It means a lot to me. Now it is onwards and upwards. No, I am not fixed or cured or guaranteed a future but for now I have a good feeling about the year ahead of me.
Every now and again something jolts me back to reality, today it was the post on Facebook by Steve Mallory announcing that our friend Denny (Dennis Jeffries) had died. Denny and I talked frequently during my years when he was a chat host on Survivor Chat and I was chat host for Caregiver Chat. He was also my friend on Facebook. Like so many of my friends on Facebook and Strokenet we never got to meet in person but nonetheless we were friends. In this modern age this will be so for many of our friendships. My heartfelt condolences to his beloved wife Peg and their extended family and all those who knew him and valued his friendship.
As I minister to the older church members in my own church and others in the organisations I belong to I am probably over familiar with death but never inured to it. I know each death robs us of a piece of our history and breaks down some of the bonds between us and others. All we can do is to remember those friends who have passed, remembering why we liked them, what we shared with them, remembering all that was good about that particular person and the ways in which the friendship enriched both our lives. We also need to remember those they left behind.
I have just had my daughter and her family here for the weekend. Not her husband as he had injured his back trying to start a stubborn water pump so he stayed home for some bed rest. It was only a day's notice so it was unexpected but turned out to be a really fun time. My grandson Chris starts University this year so is a grown man now, his sister Naomi is 14 so quite a young lady so it was funny to see them playing with the toys Alice aged six had got out to play with. The Nintendo Wii got a bit of a workout and more so on the second night when Pamela and the three Adelaide cousins joined us. I guess that is when I realise my house is small when five teens and near teens are fighting to see who will be the challengers in the new Wii games.
I do so enjoy having my grand children here, every time I see them I can see the changes in them. With Trevor and Alice's visit the first two weeks in January and then all the others last weekend I have been so blessed with the amount of time I have been able to spend with them. The Adelaide kids are going home in a week's time to start back at school, they are all doing well according to their abilities. I love them all and want the best to happen to them but have no illusions about them. Like Ray and I they will have their own struggle with life. They know Granma prays for them, but only two fully understand what that means.
Summer has been very humid so it is out shopping etc in the morning and home in the afternoons. I have to keep hydrated and remember to take some time with the affected leg elevated. I have just lined up all the appointments and tests for the second week in February prior to seeing the melanoma specialist, with more tests before I see the neurosurgeon in March. I figure this is all for my good, remembering especially that this is prolonging my life so I can look forward to seeing my grandchildren grow up. I have felt the negative effects of wearing the body stocking toes to waist bevause of the humid weather but try to remember that too is to ensure I live as full a life as is possible.
On the whole life is good and I have many blessings to count. I have a roof over my head, food on the table and many good people behind me challenging and supporting me. At my age I know that as long as we have love in our lives we are truly blessed.
Tracy wrote in a reply to Janelle that it is hard to get her head around the fact that we in the southern hemisphere are in summer and a hot one at that. It makes the Christmas we have very different from what most of our readers are experiencing. And it is hard to imagine unless you can think of the Fourth of July and Christmas coming together. Then add mosquitoes, bush fires, heatstroke and crowds of people flocking to your town from the nearest big city and you are starting to get a picture of my kind of Christmas. Despite all of that we, the Aussies and those who have made Australia home, love it.
I did go to my daughter's place for a couple of nights, had a good time without too much trouble, enjoyed the Christmas Eve supper my grandson prepared and the lovely Christmas lunch my son-in-law cooked, going to church with the family etc. I got quite a collection of small gifts, the flavoured teas and home made jams being my favourites. As the grandchildren are now 19 and 14 there wasn't the noisy excitement of younger children but it was still nice to see them open their presents.
My daughter drove me home late Christmas afternoon as they were heading off to see their other grandmother the next day and in a way I was glad to be home. The run-up to Christmas was very busy this year as I did extra shifts on the Lions Club raffle in our local shopping centre. One of our younger Lions had a stroke the week before Christmas and I replaced him as well as another Lion who finished up in hospital with pneumonia. We all push ourselves too much and end up with stress related illnesses if we are not mindful of the pressure. Anyway all that is behind me now.
So my word for this year is one I have had before - ENJOY. I aim to 🎉 celebrate the life I have regardless of the way the year influences my health etc. I am learning that I will only be happy if I plan to be happy. I can no longer guarantee good health, or prosperity or even what will happen from day to day so I just have to accept that. I am blessed with people who care about me whether they voice that or not. I found out through the journey of the last year or so that people express love in many different ways, through flowers, food, visits , phone calls and dropping by with a cup of my favourite coffee. And of course emails and comments on social media.
Some here are some thoughts for the year to come. Firstly to stay as positive as possible regardless of whether I feel lucky, happy or in control. Secondly to go on loving people and in whatever way I can to help and support them. This will include keeping in regular communication with some people I have neglected this year. I found out just before Christmas that one of Ray's favourite cousins had died five months ago. I guess I need to still send letters but to follow up with a phone call if I do not get a response rather than doing nothing and getting bad news later.
I have a more exciting period coming up with a visit from my younger son Trevor and granddaughter Alice happening next week. I am not planning life for the next two weeks after that at all, I am sure we will be out and about, at the beach, visiting her cousins, having picnics and enjoying the summer. How my ageing body will stand up to that I don't know but enjoy it I will. That is a promise. And hopefully without negative results.
So I wish you all a healthy, happy and prosperous New Year but if it doesn't turn out that way I wish you the strength to carry on anyway.
On the whole I think I cope with being a widow pretty well. But as soon as the warmer nights start we have noises outside. As a widow and even before when Ray was living here still but was unable to get quickly out of bed I am the one who goes off to investigate. It may be possums on the roof, dogs overturning the bins out on the road or a group of noisy teens coming home from a party, rarely is it something life threatening. Sometimes I just don't see the cause and I might go back to bed and worry for a while but usually I am satisfied. Tonight there is a wind so all kinds of rattles and bangs but all ones I know the origins of so I am okay.
I always say we all plan for retirement but not for old age and I think that aplies to me now. I have got a lot slower since the last operation and I know that while I can still manage housework, shopping and the ordinary tasks of life I cannot do maintenance so in the New Year need to find a way to do the jobs I can't accomplish and that means find some tradesmen to do them. This is going to be a considerable expense but as I don't go on holidays much now I can use that money.
We also don't plan for widowhood so I am now putting some thought into my future again. There are two main choices, staying in my own home or some sort of retirement complex. I think I will maybe consider downsizing to a smaller place too. It seems unlikely now that's one of my children will move closer so I am probably not going to have help in this. It is not that they don't love me but it doesn't occur to them that I need help. And I do find things more difficult now since the leg operation. Every job that involves bending and lifting takes a bit longer than it used to.
And we don't take our future needs into consideration. I am thinking of our need for help and support. Through pastoral care work I deal with the elderly a lot and I can often now see my own needs in the ones I am helping. The need for companionship is high on the agenda for widows. It is easier during the day as public transport, taxis and lifts from friends help if you no longer drive but at night and at weekends that is not as available so there is a difficulty in meeting up with friends.
Technically speaking the family should fill the gaps but in fact few have family living close by. I hear that from the little lady I pick up for church and others in my craft group so I am aware of how it will be for me if I can no longer drive. I wondered if I should express these thoughts here or if I should write them in my widow blog but I think a lot of people on here also struggle with living alone as I do or wonder how they will cope if it ever becomes their life. For those of you who have someone living with you, cherish that situation. Alone means some extra freedom but too much time alone is stressful, particularly on those nights when the wind is up and I become super aware of noises outside.
The good news is that I do have people who love me. They might not be right here but they exist. An old friend in her 90s rang me early this morning to tell me she does. She had received a Christmas card from me and rather than try to write a letter had rung me instead. I know there are people who love me, family and good friends, I am not discounting that. But it isn't always in the forefront of my mind. To my mind I am very much alone. My girlfriend who died recently was one of the people who I could ring on a night like this and it is one of the reasons I will miss her. I miss a lot of people who have been good friends in my past years. It is not the same without them.
Sometimes I think the Christmas season is hard on us as people who have cared for others. I know I never really thought about the impact before I was a widow. As a caregiver I was simply too busy. Now I am on my own I have too much time to think. There is a car alarm going off somewhere in the neighborhood, another party up the road, the sound of music somewhere further away. Somehow that accentuates the aloneness I feel. I probably need to put on some music of my own and block out the noises outside.
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.