The dynamics of living with a diagnosis

YO FRAGGLES! Couldn't have put it better meself. One of the hardest things is trying to stay sane and not thump the 'helpful' people who haven't a clue! People do assume that it's only me who is going to die and they are going to live forever. Since my diagnosis of secondaries, two of my friends have died relatively young from unexpected causes, which made us all think differently. Luck and Love xxx

Yes, being able to laugh at dark events is some sort of ladder up out of the void. The first laughs I had after they'd told me I was terminal was ringing round the funeral directors and cemeteries, eg guy who offered to come out and see me ("With a tape measure?" my partner laughed). Everything feels surreal at that stage though, and, when telling other people, you're not human if you don't cry. It is true what jeuneville says, though, everyone is going sooner or later, and I sometimes think negative reactions from other people are exactly because we remind them about mortality - how dare we? Good luck, and keep that sense of humour burning. xxx Penny

Penny and Jeuneville,
I agree entirely...dying is something we will all have to do. Some sooner than others, and to be honest that's the easy bit....coming to terms with it, sorting out the unresolved and dealing with all manner of issues unconnected with the disease are the hard bits. We have found humour helps a great deal and to our delight not everyone can understand this. It's wonderful to see the shocked expression when we say something completely tasteless. It gets us through it...no use remaining in a perpetual state of mourning because as my husband keeps saying, he 'ain't dead yet'.

I've got quite friendly with my funeral director, and sent him a pic of me in one of those Mediaeval stone coffins you sometimes find in churchyards (actually it felt oddly cosy). He has sense of humour too, and told me he liked pic, but "can't say I'm chuffed about the idea of lugging a stone coffin about". I've also done a flyer for my funeral, which he said was a first, even for him. xx Humour is good medicine, and I'm sure you'll be around a long time yet.. xxx Penny

I am both inspired and moved by how you all cope: it is my honest opinion that cancer sufferers,their partners, families and true friends deserve better the awards dished out to politicians, sportspeople, musicians/singers ... Their reward should be their achievement or trophy or money made. Those who live the unknown and face the fear day by day deserve the medals.
evelyn

today me and my dad spoke about his possible diagnosis of myeloma. i cried and he said ' time to rob a bank!!! ' in true daughter fashion i told him 'great idea until the specialist team admit they just found a cure!!!' we both ended up laughing. bear in mind we live over 200 miles apart.

i know myeloma is incurable i only hope my dad has the courage u have shown here.

And i agree, u should be given awards for bravery etc

Just to let you know that my husband passed away peacefully this morning with his family around him. He was 46.
http://uk.youtube.com/watch?v=DBHyyy9jxho This video was prepared by him in the final weeks of his life. It's his farewell.

WOW....a few tissues later.

Love the trunks...and the shower scene.

What a fantastic way of recording your husbands memories of his good times and thankyou for sharing them with us.

Your video showed how much your husband enjoyed his life and his family.

Lost for words.

Got to go and get some more tissues.

LOL

JG XXX

Now I've seen your film, though, I've cried even more. It was a lovely idea, and you look such a lovely family. I'm so sorry for all of you. xxxxx Penny

Lost for words but thoughts are with you

Lesley xxxx

Thank you all for your kind words. They are much appreciated.

hi fraggles,

just watched your video of your husband, there's nothing I can say except you had a good man there, obviously loved life and his family meant so much to him, you were one lucky lady to have him on loan for the time you had together. best wishes to you and your family and always remember you will be together again one day.

Dorne xx

Thank you Dorne, I'm really touched by people's kindness on here.

Dear Fraggles,

Im new to the world of cancer as my dad has just been diagnosed with myeloma. I admire your bravery for being able to interact with others after the death of your husband.

I think once you are faced with losing a loved one life appears different. I value each day i have more and hang on to every word my father says to me on the phone every day.

Being on here its great to know you dont walk alone.

Deepest Condolensces

Karen x

Thank you Karen, may your journey with your father be one that has a happy ending. My very best wishes.

Dear Fraggles...

I am also reaching for the tissues but am heartened by the fact that none of us are alone in this sad world...
At this moment I am alone whilst my Mum is still in hospital having treatment for cancer which we know is not curable..I hope she is home soon and will make sure that each day I will make her laugh and will make the final days/weeks/ months or her life as fun as possible..

Thank you for letting me share my thoughts and feelings on here and I hope that you all find strength and peace...

Mich x

Thank you Mich, may your journey be one where you find peace and support. xx

.... and how are you coping yourself. We haven't stopped thinking about you, and how you must be feeling. xxx Penny

Well it's odd Penny, I have had a flurry of emotions; relief, heart rending sadness, anger (if he wasn't already dead I'd kill him kind of thing), frustration...all sorts. In between all of that there is so much to sort, finances, a very complicated burial and memorial service. The so and so is too tall to fit into his bamboo coffin so one is being specially made for him (he's having a natural burial)and we have had to rearrange where the memorial service is being held as we would bring a town to a standstill. I can't settle to anything and although the tv has been on, I've not watched it for over a week now.
I'm on two weeks compassionate leave from work so at least I don't have to deal with that. The children are wonderful but I'm watching them like a hawk for signs of problems. I know things will get better and the hiatus between death and burial is always a difficult time, but right now I feel like I'm running round like a chicken with it's head cut off :))
Thanks so much for asking about me though, it's very touching. xx

Somehow, after seeing his 'final bow' and gesture on the lovely film, I'm not surprised it's a complicated service. I've planned one like that, not only natural burial but a steam train too! What we put out partners through! When I was 3 my greatgrandma died. My dad broke it to me gently, as they knew I was fond of her. "Are we going to put her in the dustbin?" was my response. Small kids accept everything as natural, I suppose because they have no control over anything, so everything that happens IS natural.

You are coping marvellously. I know how much there is to do, as I am compiling a file for my partner, and today looked up registering a death. Ah, the merry ways I have to cheer myself up! I did think about you though, whilst I was in the garden. It's a strange life isn't it? Lots of love xxx Penny

Penny,
Well Ted said his memorial and burial were amongst the few things he could control. He bought a plot in a natural burial ground, right on the top of a hill overlooking both Notts and Leicestershire, next to a field that is flooded with poppies once a year. He will eventually have an oak tree planted over him (he suggested an ATM for our daughter too). His burial is a private affair, just myself, our children and his two brothers. Our son will play the guitar and we will each say a few words. Then onto the memorial service. I will open it and then the children will each speak, my brother will read a poem by Kipling, and his brother will give a humourous account of his final days. Our son will again play the guitar and then I will read out a letter from Ted where he talks to people. Following this, his company take over and we have a train naming ceremony where our grand daughter will unveil his plaque, then onto the train for a ride, buffet and champagne. A day I hope people will remember forever. xx

that I'm crying again. I have a very good imagination, and can see how beautiful it will be. What a fitting tribute. I wish you and the family well. Thought you lived near me! My plot is on border with Derbys though, and my tree will be a holly - although they already planted one at Brewhouse Yard Museum for me - funny attending my own Memorial Picnic last summer - bit premature as it turns out! I think it's wonderful that your family are so involved, shows how much Ted was loved....That train and his memory will go on forever. xxxx Penny

Hi Karen

I too am new to the world of cancer, my dad has prostate and possibly bladder cancer (wont know until 3 weeks). I know exactly what you mean, we take so much for granted.

xxxx

On Wednesday night we had Ted's wake. There were so many people there we thought the house would burst at the seams. We laughed and cried and he would have loved it.

Thursday was the first day of sunshine all week, and at 11 am they brought Ted home for the final time. His coffin was made of bamboo, with six red roses placed on top. It was beautiful. Finally my composure left me as I thought of that big strong man inside.
So many cars followed us, it's a wonder we didn't jam traffic for miles and as we took him on his final journey, we chatted, we cried and we were quiet, thinking about this man we were about to bury.
My brother led the mourners off to the memorial service and myself, the children and his two brothers continued to the natural burial ground. There he was lowered into the ground as one of our sons played his guitar - 'Somewhere Over the Rainbow'. We each threw our roses in and spoke to him. The bearers had withdrawn and left us to our own devices so we chatted to him and then turned and walked down the hill. My daughter didn't want to leave him, but I reminded her how he chose that place, he would be all right there.
We were taken to the memorial service. So many cars! So many people, too many to fit into the marquee they had put up.
'The Show Must Go On' by Queen heralded our entrance and I thanked people for coming, explaining how we were doing exactly as Ted had wished. It was his final gift to us. Mourners had been fed, watered and entertained as they waited for us and they wrote their memories of Ted. These will be bound into a book for the family to keep. A montage of photos played in the background, to remind people of how he was, not of how he became when he was ill.
'The Boys are Back in Town' - Thin Lizzy played then our children spoke about their dad. People laughed and people cried.
'Somewhere Over the Rainbow' - Iz played and my brother read Rudyard Kipling's poem which ends 'you'll be a man my son'.
'Big Country' - Big Country played and one of Ted's brothers recounted his early days and his final ones. People laughed and people cried.
Our son played the guitar again and sang Folsom Prison Blues by Johnny Cash. It was so rousing...so poignant. He had played that for Ted the night he died as we sat around his bed.
I explained how Ted had wanted to make a dvd where he spoke to people. We had never realised how short time was and he never got to do it, but I had the script. I read it out and as he spoke to each person, I went over to them and said it to them and them alone. I never faltered.
'Time to Say Goodbye' - Andrea Bocelli and Sarah Brightman played as we left the marquee and headed over to the railway platform. To a champagne toast our grand daughter unveiled a plaque on one of his locomotives, naming it after him. Then we boarded the train. There were so many people another carriage had to be put on. As we toured the countryside, people chatted, people laughed, and we were fed and watered.
What a wonderful day. A day everyone said they would never forget. A person everyone said they would never forget.
We fulfilled our promises to him. From the moment he became ill to the time we said goodbye, those who knew him and loved him made sure everything was done as he wanted. He was buried as he left the house...as we left him. He was spoken about only by those who knew him well. We were irreverant, parts of it were in such bad taste he would have loved it, but it was done with dignity. It was done in the spirit of the man.

We did it!

Hi fraggles,

Read with silent reverence. What a beautiful account of the day you said goodbye to your husband.

JG

You are a wonderful family. I don't think there are many around like you. This was a memorial fit for the man you all loved, something as individual as he sounds, and something to which all his dearest family contributed in a unique way. Is the train at Great Central? I would like to see it, if I can. Much love xxxx Penny

To Fraggles

It's not often I'm lost for words. What a wonderful celebration of Ted's life! The video is very moving. God be with you.

John

Thank you so much.

Yes the loco will remain at Great Central (not sure if it will be at Loughborough or Quorn) for the next two weeks. It's a DRS Class 37/6 No. 37610 and is named T.S. (Ted) Cassady 14.5.61 - 6.4.08

Much love to you all xx