Anthony died on 30th July in a London Hospice
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May 7, 2009 at 7:16 pm #21943paulineMember
Dear all,
I’m posting from a really cold, grey and miserable London. I hate this dull weather but then the summer will bring with it terrible sadness because Anthony was first diagnosed with PSC in July 2006, with cancer in June 2007 and died in July 2008 and so the better weather will always be filled with deep sadness.
I am still on the manic work, keep busy conveyor belt that is my life these days. I feel very tired which I find helpful as I feel I may get a good noght’s sleep one of these nights!
I am trying not to reflect too much on life at the moment but just get on with it. I know this won’t last long but I think a feeling of numbness is needed every now and again, don’t you?
I hope you are all alright and will have a pleasant weekend.
Take care
Love
PaulineMay 6, 2009 at 11:43 pm #21942darlaSpectatorHi Everyone,
Sue, I see your life is getting back to normal after your holiday. It is interesting & sad how many people are in similar situations to us. More than we realize. I got my filing done last month, so now I will again try to be more organized this year. I usually start out real good, but eventually get behind & end up doing it all at the last minute once again. I am glad that you are doing OK, but it will never be the same, will it? Atleast you are pursuing new interests & that is a good thing.
Pauline, I am doing a little better this week. Trying to keep a bit busier whenever possible. I know how you feel about all the anniversary’s and what they bring to mind. It seems that it is just one after the other as they mark the time passing us by. Like you said, we just have to be brave and strong & try to carry on. Atleast we know that we are not alone & can lean on each other.
Janet, I hope things have settled down some for you. It does seem more frustrating and harder to deal with things because of what we are going through. I am glad you are still able to get in the ocean and relax. I don’t envy you having the winter months looming in front of you. I know how hard it is as we have just finished going through them. It all affects us so much more deeply now doesn’t it?
Joyce, I hope things are going OK for you. It looks like our weather here is going to be nice for a few days anyway. I just wish we could get into summer with warm weather & sun shine. All we get is a day or 2 and then it is cold or rainy again.
I hope the rest of the week goes good for all of you and also the coming weekend. Everyone take care.
Love & Hugs,
DarlaMay 5, 2009 at 2:16 pm #21941uksueMemberHi Everyone,
Glad to catch up with you all.
I am settling back down to my life at home after my holiday, thanks for asking Pauline! I think I have come back a little calmer, it was lovely meeting such a nice bunch of like-minded people, and we are keeping in touch by e-mail and are planning a get-together in the future. It has been really good for all of us to meet different people, and feel we have a new group of friends.
Janet, I too think you are doing so well, the parcticalities get us all down at first, but as time goes on, I think it is getting a bit easier to take the hiccups in our stride – if something can go wrong I automatically expect it too now – then it is a nice surprise when it works out ok! I am sorry the weather is changing for you just as it is getting better for us – I think we all found that first winter hard – I hope your good attitude carries you through!
Joyce, How is your job going? Are you back in the swing of things now? You seem to work such long hours, I think I would be exhausted if I had to do your job!
I am currently trying to get my year end filing on line done – I only have the end of this week to do it , but it is so easy to put it off till the last minute – I am sure you do the same thing Darla with your paperwork! It isnt even if the government pays me for collecting their taxes!
I think I am getting into more of a different routine now – it helps mostly, but still doesnt fill the cold side of the bed! I find though that much of my time is filled up with new things, and I am thankful for the distraction.
I had lunch with my old schoolfriend yesterday – she lost her huband to cancer 5 weeks ago now. She is coping quite well, she is a quiet, but I think quite a strong lady, she also has a cousin who is our age and also has a husband with terminal cancer – I can’t believe have many of us are out there – it seems most of my friends are in our situation – 6 at least all within a year or two of my age – it doesnt really seem fair – but by helping each other it makes us stronger.
Anyway, I hope you all have a good week and will be thinking of you all.
Lots of love
May 3, 2009 at 10:29 pm #21940paulineMemberDear all,
I’m sorry to hear your week has not been too good, Janet but to read your other posts, it seems you are doing really well, considering everything you have had to cope with in such a short time. I hope this week will be a better one for you with fewer problems and brighter weather!
I’m gald you enjoyed you cousin’s stay, Joyce. That must have been comforting for you. The trip to New York may be in the autumn – I’m not sure yet but will certainly let you know!
Are you settling back in the UK Sue? At least the weather isn’t bad, is it?
How are you Darla? You know I have been thinking of you as you reached the 8 month mark yesterday. I am becoming increasingly concerned about the one year anniversary of Anthony’s death. I think it’s because it is coming up to a year very soon since his pain first started and everything moved very quickly from there. I have been through everything over and over in my mind so many times in the last 9 months but even so I am still dreading and fearful of these next few months. Anyway, I suppose I’ll just have to be brave about it as we all have to be all the time.
I think you’re right, Joyce, we have come a long way in these months, haven’t we but how hard and exhausting it is!
Take care everyone
Love
PaulineMay 3, 2009 at 12:17 pm #21939magicSpectatorHi people I hope your weekends went ok.I have had a miserable week of car troubles and phone disconnection which has left me frustrated and teary.i found I am ok when things are smooth but any glitches cause a meltdown.The weather was also dull and unseasonably cold last week.It has been sunny over the weekend and I have been for a swim in the ocean pool as the sea temp lags behind the air temperature.It made me feel better,I feel very sensitive to weather fluctuations at the moment and dread the coming winter months.
Anyhow I hope you enjoy the warmer weather in the northern hemisphere.We have colds here but no swine flu yet love from JanetApril 29, 2009 at 10:31 am #21938jcleggMemberHello to all of you,
Think how far we all have come over the last few Months! It is amazing, actually. I had a great time visiting with Sharan, and will miss her so now that she has gone.
Janet – it sounds like you are ready to rejoing the working world – the working electronic world, actually. Tthat is what my “project” that I have talked about that we have been working on iat work – I work in long term care – in technology – and we are putting in new software that will carry us into the new world of an electonic medical record. It is difficult and rewarding doing this, and a great project for my final challenge! I am not sure I am up to this mentally, but – it is what it is – the world is not waiting for me – I have to catch up to it!
Sue’s trip was my idea of wonderful, and I would love to do that someday.
Pauline – what ever happened to the trip to the states? I don’;t remember!
And Darla – it was 98 degrees here on Saturday – can you believe it??
Love – Joyce
April 28, 2009 at 10:44 am #21937magicSpectatorHi people
Sue,that holiday sounded terrific-like material for a book.I love Greek food,we have a Greek club near here that does cheap buffet food.
Joyce,nurses are always good types although I may be biased-but I hope you enjoy your time with your cousin.
I will go back to my one day per week in a fortnight,I have to do a computer update first,apparently they are now completely paper free.I have found a car too so things are moving.Sometimes I cant believe I have survived all this-Joels death followed by my sons exacerbation of mood disorder.You people online understand more than many other friends and aquaintances but I am marvelling that Im actually keeping going,functioning even though its not quite me as I used to be.
We are into colder weather and shorter days now and I find the changing seasons odd on my own.I have had some help with the garden thank goodness.
Pauline I hope things are ok for you and Darla I hope you and your boys are good too love from JanetApril 27, 2009 at 12:09 am #21936darlaSpectatorHi Everyone,
Just checking in.
Sue, It does sound as if your holiday was successful. It is interesting that there were so many that were in the same situation as you. I am so glad that you had such a good time and that everything worked out so well for you.
Joyce, I hope you and Sharran are also having a good time together and enjoying each others company.
Pauline, I am glad you are keeping busy. It doesn’t make it all go away, but it does help a little, doesn’t it?
Janet, I am also thinking of you and hoping that your weekend went OK.
Everyone take care and try to have as good a week as is possible.
Love & Hugs To You All,
DarlaApril 26, 2009 at 7:18 pm #21935paulineMemberDear all,
I am back again from Italy and have been keeping busy with work since I got back.
I am so glad your holiday was such a good one, Sue. You clearly couldn’t have chosen a better scenario. How surprising that there were so many of you going through bereavement. I think that must have been helpful. It is so difficult when you don’t feel people understand but clearly they did and it must have helped you to not feel so lonley. I also think that link with local people and families is so important. You really immerse yourself in the culture that way. It sounds great.
I hope you have a lovely time with your cousin, Joyce. She must have been a real comfort to you when Butch was in his last few days and I’m sure she will be a great comfort to you now.
I hope you are alright Darla and Janet. I am thinking of you all.
Take care
Love
PaulineApril 24, 2009 at 11:45 pm #21934jcleggMemberSue,
I am so glad to hear that your trip was a success – it sounds like a wonderful time, and great life- learning experience, too. I guess we all do need to remember that this world is filled with people who are worse off than us, don’t we? It certainly does help to put things in perspective.My cousin Sharan is flying in tomorrow to stay with me for 4 days. She is the one who is like a sister to me – we were raised together – and – she came and stayed with us the last week of Butch’s life to help me take care of him – she is a hospice nuse in Texas – actually, she does home health now. Anyway, it was so wonderful of her, as it meant he would have people he knew taking care of him at the end, and I am so happy she is coming to visit.
Everyone – have a good weekend.
Love -Joyce
April 24, 2009 at 11:48 am #21933uksueMemberHello Everyone,
Well I am back home after my holiday and what an adventure that was! It turned out there were 20 in our group, 5 men and 15 ladies, out of them 9 of us had lost our husbands/wives over the last year so I guess everyone who booked had the same idea as me. We were a mixed bunch, from 33 to 73, but everyone bonded. As there were so many of us who had lost loved ones, it was a very theraputic week, as it gave us all time to talk without thinking we were burdening anyone, as most were suffering in some way – there were also quite a few newly divorced in our group. But the main therapy came from the tour guides, an English lady and her husband, a Greek Taverna owner. These people gave us such a lot of theirselves, not only did we do the cooking, but also they took us on sightseeing trips, walking, a trip up the mountains, but most of all they welcomed us into their Greek family. The culmination of the holiday was on the Greek Easter Sunday when Stellios took us up to his family house in the mountains, where he showed us round his mother and father’s house, and we joined the family outside their house for a special meal. At this he said how much he has enjoyed sharing his life with us and that he felt we were friends not customers – we were the first group they had done this holiday with – all the family were so welcoming – the little girls made us gifts of stones painted to look like ladybirds, which were a symbol of good luck, at the end of his speach everyone had tears running down their faces it was so touching.
I managed most of the activities, but had to miss out on the church services on their Good Friday, I was having a bit of a bad day and didnt want to depress anyone by crying at the services, but I managed the midnight mass on the Saturday which was a much happier service culminating in such spectactular fireworks one landed in the hood of my coat and set it on fire and a kind Greek man in the chuch came an grabbed my coat and put it out. What the holiday did do was revive my faith in human nature – they still have such a family orientated life, and are so generous – we have lost all this in our modern world.
It was a bit of a let down when I got home on Tuesday evening, my problems were still there and the house was still empty, but then my friends came around and we were soon laughing over the photos. What would we do without freinds?
On the flight home I spoke with a lovely Canadian lady who was apologising in case her son disturbed me as he was autistic – she was so nice – we got chatting and it turned out that she had a particularly aggressive type of breast cancer which they werent able to control, in addition to this she had a father back in Canada who was paralysed, who had lost his sight and was losing his hearing, and a brother who had suffered brain damage after an accident. She couldn’t visit them very often as she was married to an English guy and her son needed 24 hour care. But in spite of this she was so upbeat and cheerful about things it made me think that I should not be sad and try to live for the day – as Ray always did.
So all in all a very memorable holiday! It taught me so much more than how to cook Greek dishes!
I hope you have all been Ok while I have been away, and coping as well as you could.
Well, must do some work, it ws nice to catch up with you all again.
All my love, Sue xApril 20, 2009 at 7:14 pm #21932darlaSpectatorHi Everyone,
I hope things are going well for all of you.
Pauline, I hope things are going better for you this week. I know exactly how you feel. I think it is exhausting trying to figure this all out and wondering what is the point of all this. It truely is a lonely, hard seemingly pointless life we are living right now. As pointless as it seems, I do believe we need to carry on as we would probably go crazy if we didn’t. I like you know I need to make the effort for myself as I also do not feel comfortable relying too heavily on others. I think a lot of self pity is no good for anyone, but a little can’t hurt. I think we are deserving after what we have all been through.
I also have made some efforts to try to help others at least that seems to give me some sort of purpose and it does help.
Janet, We really do need to lean on each other for strength, comfort & support, don’t we and we are as happy to be here for you as you are to be there for us & others.
So, as you once said Joyce, we will just carry on living this “altered reality” of a life.
Everyone try to have a good week. I will be thinking of all of you as the week goes by.
Love & Hugs,
DarlaApril 17, 2009 at 10:23 am #21931magicSpectatorI love Joyces saying of the ‘put one foot in front of the other’ because Im a great admirer of ‘commonsense’ . In a way we all lean on each other when we need to and I have always been happy to be the one leaned on so dont worry too much Pauline -life is a give and take situation
love from JanetApril 17, 2009 at 8:43 am #21930paulineMemberYes, Joyce, that’s right. We would probably really go mad if we didn’t keep busy and the thing that always keeps me going is that I don’t want to be a burden on others and I think that this is all that happens if we don’t make the effort ourselves.
I still don’t know where all the keeping busy is leading though – it seems like nowhere! I try to make sure that some of the things I keep busy with are things that may help others and that helps me a bit.
Anyway, I’m writing my list for the day! All the best to everyone!
Love
PaulineApril 17, 2009 at 2:31 am #21929jcleggMemberHello Friends,
I am just popping in here to say that I know how that feels – the loneliness, I mean. It just doesn’t go away – it is always here, and there is no solution to it, I guess. Pauline, I know it all seems kind of useless – why are we doing this stuff, anyway? But – I don’t think I could stand the alternative – to not do anything – there would be nothing but thinking and thinking, and it is thinking that gets me into trouble every time. So – we go aimlessly on – doing stuff, living, – putting one foot in front of the other. I guess we hope that the good days get more and more , and the bad days less and less. Heaven help us all, I say!Hugs – Joyce
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