Dear Dai Your resting place sounds perfect, im afraid Michaels is more of what feels right as we never really talked about his ashes, lets hope its something Janet wont have to carry out for a very long time. The Major Oak is a no no wouldhave been ok about 40years ago.
Hi Tina Min mentioned she had some of Peters ashes sewn into little bags, not sure, something else to think about.
Since we collected Michaels ashes that has been one of my worse nightmares
about them being stolen!
Love
Sue
Oh Gill what a lovely photo, at least nothing can take those away from us
Love
Suex
Dear Eve Im so sorry to read about Slims relapse its so hard to watch someone you love suffer but I know from all the kindest and support youve given me that you will get through this blip. A more positive note Revlimid worked well for Michael he had total remission for a good couple of years with little or no side effects and that was without any drug combinations. So onwards and upwards as Tom would say
Much love
Sue x
Hi When Michael was given 3months to live by his consultant, the reaction of most people was, but he looks so well, and then avoided us like the plague.
My family used to say people were frightened of upsetting you, but we were already upset and this added to the situation.
Even now after his death when I go outside the front door, neighbours nip inside so they dont have to speak to me. Yet yesterday my daughter took me to the coop travel agents to book a holiday. After a couple of hours we found what we wanted, the young women behind the counter asked if it was for a special celebration, I looked at my daughter and she said my dad died 3 weeks ago and I wanted to take mum somewhere special,the young women got up from the counter gave me a hug and started to cry, but that wasnt the end she asked about MM treatment and everything, when we left there was no awkwardness or anything.
It just shows once the initial shock is over it can be spoken about without the bowed heads and no eye contact
Regards
Sue
Hi Tina I havent worked for the past 6months,I had to stop as all the hospital visits,trials etc became to much for me to carry on full time. Looking back now im pleased I did as I was able to spend all my days with Michael not really believing they would be his last. Work have kept my job open for me, I will probably go back at some point,perhaps part time, but not yet.
Windsurfing Im afraid it would have to be ground surfing for me im terrified of heights, although my daughter is trying to coax me into doing a sponsord absail in Edinburgh for MM. I must admit I would love to do itif only for Michael I know he would be there willing me on.
My family are brilliant, but its the evening and night time I find the worse. Im not sleeping even with tablets but I see my GP tomorrow,
Take Care
Sue
Dear All You are such a lovely bunch of people. Tina i will almost certainly be the same with Michaels clothes I cant even open the door, but I do keep his dressing gown on the back of the airing cupboard door and in the morning I wrap my nightie inside it, see Ive just started myself off again.
Tina do you still work?
Love
Suex
Dear Min When I read your post it made me smile ( and cry )especially the bit about someone at the door, that is my worse nightmare. i thought about grtting another dog (lucy our chocolate lab died 1year ago) but then I thought perhaps I should wait a while.
The club sounds good perhaps in a couple of months time, or im I jumping the gun.
Hoping to book a few days away with my daughter tomorrow,
Take Care
Suex
Dear Min That is a lovely idea, I had decided not to collect his ashes until the day before we scatter them. dont ask me why I just find it a bit spooky, silly isnt it he never hurt me when he was alive so why should he now? Night time is a big problem for me, I dont like being alone (my daughters do stay when they can, but one travels with her job and the other a nurse who works shifts) I feel overwhelmed with grief at this time, I panic when I think of never seeing him again.
Love
Sue x
Hi All Thank you for your lovely replys Tina,Min,Gill my feelings are just as you describe. I feel worse now than I did 2 weeks ago,There is lots to sort out, which im ok with but as soon as I sit down I start to cry. I tried taking all the cards down today but I coundnt so I put them all back up and cried again. Its Michaels birthday and our wedding anniversary on the 6th April so myself and our 2 daughters are going to sprinkle his ashes on the cliffs over looking the sea in Scarborough. Not very exotic but we had so many happy times in Scarborough and Whitby and we always hoped to retire there.So were having along weekend at the Crown Spa Hotel for a pamper weekend and to say our special goodbyes.
Love to all
Sue
Dear All
Thank you again for your replys,hope you are keeping well Clare. Time 4.30am and back to the site for comfort and support,cant sleep at all doctor has given me some sleeping tablets but im afraid to take them.
The funeral is on Friday at 2.15 still cant believe this is all happening,I keep expecting Michael to walk through the door, probably will hit me on Friday.
Love
Suex
Dear All Thank you all for your kind words and support. Dai your words are always a comfort. Tina i will email you probably after the funeral. I cant believe there is so much to arrange, and of course I want to do it all myself.
Everyone has been so kind. phone calls,visits but it does frighten me when it all stops and I have time to think.I just cant imagine life without him
love
Suex
Dear All Michael is asleep at the moment so I thought I would give you an update. The last couple of weeks have been mixed, I havent managed to visit the hospice yet as we have been snowed in, but hopefully now the weather has changed i might get the chance.
As you all have said th mac nurse and the district nurse have been brilliant I cant thank them enough. The district nurse is coming in 3 times a week as Michael has developed sores on his feet, this is because he is in bed most of the time as his legs are very weak, and he is on a very high dose of morphine so hes asleep quite alot of the time.
We are having a stair lift fitted on Thursday to see if we can get him downstairs for a short time each day.Luckily he has avoided any infections.
The GP has had a talk with me about differnt drugs and a DNR form which I have had to fill in.
I still feel as though no one will talk to me about the prognosis we were given and the way all treatment was stopped, who knows I will probably never be given a straight answer. But I now realise the important thing is Michael so im doing all I can to make things good for him, im worn out mentally and physically but I know my time will come.
Much love to you all
Suex
Hi All Sorry havent replied, what a week!Saw the GP Friday (needed a sick note for work been off with stress since Michaels prognosis) He refused saying i was now a carer and this could be long term? I looked at him and then he asked what the oncologist had said? I wanted to say he doesnt see one but I was to upset, although im 60 I have supported us both for the last 5 years and cannot just give up my job. (this sounds terrible when I read it back)I just started to cry and he signed me a note for a month and said good bye. I sat in the car park and thought of all the things I could have said but my head was all over the place.
Had a bad Saturday and Sunday Michael still in pain. Monday called the macmillan nurse she couldnt come out until Friday.Tuesday had an interview at work with OH and HR they were very good understood why I was off work, they gave me quite a few options.one being a career break from a month onwards (no pay, but at least I wouldnt have to make any sudden decisions about work)
Wednesday had to call my friendly GP out (not) could not control michaels pain at all, rang the surgery asked if I could take him down! The GP came out later that afternoon he asked him a few questions then upt his MST and said I needed to contact him in a week if no better.
Friday the macmillan nurse came out, what can I say she was lovely, she answered most of my questions sorted out Michaels pain, (could not believe how we had been left) She has arranged for us both to visit the hospice next week for some alternative therapy/relaxation and to look round, She also said Michael could get high rate DLA care as he is terminally ill she would sort that out too . She will ring Monday to see how we are but she will come out again nex t Friday.
Sorry the post is a bit long winded . I know the prognosis hasnt changed but I do feel better for the support
Love to all
Suex
Dear All Thank you so much for your replys, I would like to wrap you all up and have you posted to my address, sounds silly but would love to meet you all.
have made the decision to ring the Macmillan nurse on Monday. Gill the hospice sounds good. were the same as you we have nowhere to put a hospital bed or a hoist for the shower. At the moment im the one trying to sort out Michaels pain. Im making grafts as to when he has the oromorph then I have to make anappointment to see the GP so he can increase the MST, he doesnt even come out to see him.
Hi Alison when Michael came out of hospital a few weeks ago the DN did contact us she did ask me what we expected of them and I said probably washing etc but she said they did not do that. They do ring to see if Im ok every 2 weeks but as he doesnt need any medical care im not sure what else they could do for us.
Are things different in other parts of the country
Love
suex
Hi Tina just read your post,how lucky is your brother living in Cornwall. Michael and I spent our last "normal" week away last June in Falmouth, we both loved it so much. I am so pleased you had a lovely time
Happy New Year
love
Suex
