[GillParticipant]

Hi Vicki, I have already tried to reply to your message but I lost the post somewhere in the ether. Apart from sport which Stephen loved and I loathe, it seems that you and Colin lived the same life as us. We would spend whole Saturday afternoons trying out different recipes with very few disasters. Once Stephen had to stop working we went out to eat once a week. Nothing posh, a Carvery or “one price” Chinese. We would go a tiny bit up market for birthdays etc. I haven’t been out to eat for months, Once the weather gets warmer I will venture out. I take a book with me and eat in places like the Carvery I ask to sit in the snack bar section, although I have the Carvery food. I cannot face sitting on my own in the main restaurant surrounded by couples and families. As for drinking we both loved wine, although when Stephen got ill he said that alcohol tasted foul. As I said very similar lives to you and Colin. I think we all move forward a little bit as time goes by. When Stephen first died I’d wake up in the morning, and in the few seconds between being totally sleepy and awake I would think he had already got up, forgetting he was dead. I am sure that things will always come back and “bite me on the bum” As for the mince pies, I think it was because I had not bought them since Stephen died.

[GillParticipant]

p.s picture was taken on holiday. Stephen’s face was so calm but I was giggling because he was pinching my bum!!

[GillParticipant]

I am so sorry that your husband has gone. I would love to tell you that it gets better, but you do learn to deal with it. My children were much older than yours. They may be very angry with Dad and feel very guilty for feeling that way.

I am no expert or councillor but I wonder if it would help to let them know that is OK to be angry with Dad. He didn’t want to leave them and would understand their anger. I do hope that you all get through this awful time and manage to move forward a little

Love from Gill x

[GillParticipant]

Hi Tina

You hold on to that tea towel forever. I cannot use a “steel” to sharpen knives but I would never part with it. I miss Stephen so, so much and do not think that will ever change, but I have learned to carry on. I also realise that family and friends have no idea how much I am still grieving, but that’s OK. It’s how it should be.

Love from Gill xx

[GillParticipant]

Dear Rosie
I am so sorry to read that Chris has gone. I don’t come on here very often now. My darling husband, best friend and soul mate died in September 2012 aged 57. There is not one day that I don’t miss him. I have passed the stage of disbelief, in the early days I would wake up and, half asleep, look to my right and try to work out where he was. All of this took a matter of seconds, but the wave of grief that came with the realisation that he was gone was awful and I just used to sob. Like Chris Stephen’s end came quicker than expected. We had been told that Stephen had 2 years left maybe more but he was dead in 4 weeks.

You may have read elsewhere what Stephen’s last words were. He was not one for swearing much but he looked at me and said “Gill is this it? and please don’t give me any bull****” I said “you’ve got to go now Darling” he took one long breath and died.

Your family are so young it, but do keep his memory alive and make sure you all talk about him. Yes it will bring many tears but also a comfort. I now can get cross with Stephen 🙂 He was a time served carpenter from the days when there were apprenticeships) but for many years he worked for himself as a building and maintenance contractor employing a few others.

Our double garage has never had a car in it !!!! Just thousands of pounds worth of plant and tools. I can tell you where the concrete mixer is and the 2 generators, but a small screwdriver or light weight hammer? You cannot see the wood for the trees. I stand there and shout “where the hell did you put that”
Rosie I would love to tell you that one day it will all be fine, it won’t be. But it will turn into something far more liveable than it is now. and you will smile again one day at all the funny and silly things that happened during your life together.

I do not pray but I assure you that you are in my thoughts

Much Love from Gill xxx

PS found plenty of screwdrivers but not a light weight hammer. When I do need to use a hammer the one I found is so heavy I need 2 hands to lift the darn thing!

• This reply was modified 9 years, 11 months ago by  Gill.

[GillParticipant]

My husband was on a really high dose of dex. It turned him from a laid back pussy cat who rarely got angry to a a bad tempered, argumentive monster. We called this dexatude. I hope you are on a low dose and it is not affecting you too badly

Gill

[GillParticipant]

I am sorry that your Dad has died. I am sure your post will make people more hopefull. He actually lived on for 19 years after diagnosis. Let’s hope for a breakthrough soon. My husband died 4years after diagnosis aged 57

Gill

[GillParticipant]

I hope Slim’s funeral went really well, and was a real celebration of his life. Gil xx

[GillParticipant]

I will be with you both tomorrow and I hope it is a wonderful celebration of Slim’s life. Don’t forget a straight back, determination and a pocket full of tissues.

When Stephen died my daughter flew over from the States. She was devastated that she did not arrive before Stephen died, but she said she was there to support me. Bless her she sorted out all of the funeral arrangements and booked the wake? but checked with me that what she had arranged was OK.

When we arrived for the service she took one look at what Stephen called a giant picnic basket (wicker coffin)and almost collapsed. I had to support her! UWe had been to the funeral parlour previously and left in his coffin, his favourite sweets, his wooden staff that a friend had carved for him when his walking got bad and his rather fetching, large leather, wide brimmed hat that he wore in the rain when he walked the dogs (I wish I had kept that!)

Everything was quite irreverent I remember we entered while “Always Look on the Bright Side of Life” was playing. The only serious piece of music played was Nessan Dormer spelling? Which Stephen and I both loved. We were never serious music people, but singers like Maria Callas could certainly raise a goosebump or two.

Yes I do still cry, but my memories of our life together will keep me going until it is time for me to go

Genuine love and sympathy Gill xxx

[GillParticipant]

Dear Eve

I am truly sorry to hear of Slim’s death. Stephen died nearly 2 years ago. Sometimes it seems like a lifetime away and sometimes it feels as though it was yesterday.

Like you and Slim there was nothing left unsaid between us, and as for regrets? I have none. (as long as you don’t count the fact that he got this bastard disease).

For a while I felt as though I had told him to die. His last words were “Gill is this it? and please don’t give me any bullshit” I replied “you’ve got to go now darling” and he smiled, closed his eyes and died. For quite a while I thought he had died because I told him too. Then I realised that I had been told by the hospice nurse that his death was imminent.

Like Slim Stephen did not want a religious service and so it was held by a Celebrant. He was fantastic. He came to the house and spent ages asking me about Stephen and our life together, and during the service you would have thought that he had known Stephen for years.

I had told the Celebrant a funny story regarding our wedding and after Stephen’s funeral loads of people came up to me and said “I didn’t know you 2 were married”. We had lived together for well over 20 years and decided to marry when we bought a house in France. To buy a house there as an unmarried couple is a nightmare. So I persuaded a couple of work colleagues to take a very extended lunch hour and be witnesses. We traipsed up to the registry office, got married and then treated everybody to a meal.

We didn’t bother telling anybody that we had married, but I must admit that the fact that I was classed as his next of kin when he died made things more simple as he had fallen out with his family years before he died.

This may sound very strange but I still “sort of” talk to him. Not in my day to day life but when I am watching television 🙂 We would be watching some heart wrenching TV programme and I would get quite emotional and believe it all. Stephen, being the cynical beast he always was, would say that it was all made up to get money out of you and I was silly to believe it.

He never objected to me sending money, although he thought I was stupid, (not much £3 or £4) and I still do. When I take the phone number from the TV appeal I say out loud to Stephen “I know, but I am still damn well doing it!”

Stephen’s ashes are in France. He adored being there so a very close friend came with me to France. We took Stephen’s ashes, a bottle of decent champagne (the last one out of the wine rack!) and 2 glasses over to the small field Stephen had bought years before.

We tipped out his ashes, doused them with a glass of champagne and drank a glass each to say goodbye. We then went back to the house, drank the rest of the champagne and had a little “toes up” before starting supper. I did keep a little of the ashes back as the grandchildren had bought small silver vials to put Pop’s ashes in and keep in their bedrooms.

I have just realised how selfish I have been with this posting. I have waffled on about MY loss and MY husband, and I wanted to post about you.

I hope that the 9th September is a great celebration of Slim’s life, I am sure you will do him justice in spades.

As for your last line do you remember the Saint Trinians films? The late Joyce Grenfell played a hopeless, hapless teacher. I read about her life years and years ago and discovered that she had written a poem for her own funeral.

If I should go before the rest of you
Break not a flower nor inscribe a stone
Nor when I’m gone speak in a Sunday voice
But be your usual selves that I have known
Weep if you must
Parting is hell
But life goes on
So sing as well

It was read at Stephen’s funeral. I don’t know how I did it but I spoke at Stephen’s funeral. I spoke about him. Good points and bad The guys he employed all nodded their heads when I got to Awkward, Stubborn and sometimes Impossible, but they also nodded when I talked about his Compassion, sense of fairness and his generosity.

I read some poetry “When I am old I shall wear purple with a red hat that doesn’t suit me” by Jenny Joseph

And yes I wore purple and a red hat

I will be thinking of you and Slim on the 9th. I am sure you will do him justice and hope all goes well for you much love Gillxx

Many years ago my dad died and I bought a small weeping cherry tree to put his ashes underneath. Stephen dug the hole and placed the cherry tree in it. A great wind started just as Stephen was emptying Dad’s ashes and Stephen always maintained that Tom was buried in 36 (our house)38, 40 and probably further!!

[GillParticipant]

My husband had 2 SCTs in 2010/2011 we were told that the cost of each was £30,000 We were fortunate enough to have private health care and the bills we received were for food etc in the hospital.

I am still not sure who paid the cost of the SCTs but I think they were on the NHS.

If they have stopped funding transplants on the NHS I would sign any petition to protest. When I think of the money that we pay into the NHS and how abused it is eg Health Tourists I get really cross. I have read about people from abroad “visiting” family here and “discovering” that they have an advanced illness that would cost a fortune overseas but we just shove it on our NHS bill.

Rant over. Good luck to you and your wife

[GillParticipant]

My husband died in September 2012 aged 57. He had had mm for 4 years but the end came very suddenly. The pain will never go completely lesj, but you learn to cope with it. I miss Stephen all the time, but have learnt how to cope.

[GillParticipant]

PS great news about your daughter. I don’t suppose you will have time to post with your visitors are with you. So post nice long message after they have gone xxxx

[GillParticipant]

Eve I had chicken pox aged 28 I was delirious and could see spiders climbing up the walls. The pain was unbelievable. When my kids had it as children they were absolutely fine

My daughter was terribly ill when she caught measles and was close to being hospitalised but we were told not to have her vaccinated because she suffered from febrile convulsions She grew out of them thank God

I do hope that Slim continues to improve

love from Gill xx

[GillParticipant]

Hi Eve and Slim I don’t log on very often and I was sorry to hear that Slim had been so unwell, but things seem to have improved a great deal since you changed hospitals.

None of us are oblivious to just how life threatening mm is, and I think the quality of life is paramount.

As you know Stephen died in 2012 aged 57. Up until a few weeks before his death he was still enjoying quite a lot of things, although it was obvious that his body was slowing down. His death was still a shock. He died 4 weeks after we had been told he’d got a couple of years left.

I know we all have to plan ahead somewhat or we would never make it to a hospital appointment, dental check, we could even run out of food! But I still think there is a place for Carpe Diem, seize the day. Another way to say this is

Yesterday is history
Tomorrow is a mystery
So live for today

I don’t particularly want to live so long that I am a dribbling wreck but I hope I live long enough to see this B*****d disease kicked into touch and vanquished forever.

I hope Slim continues to feel a bit better and wish you both well.

Love from Gill xx

PS I am sure I’ve said this before but here goes anyway. My darling Stephen’s last words were “Gill is this it? and please don’t give me any Bulls**t” he very rarely swore but this still makes me smile.

I did not need for him to proclaim his love etc. (I know I was adored)

Good luck Slim xxxxx

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