This topic contains 28 replies, has 15 voices, and was last updated by 
Tina 12 years, 9 months ago.
Listen you lot,
I have grieved… for my father, of whom I take after in so many different ways and for my beloved Nana, who loved and understood me when so many didn't… but never for a wife or partner and I hope I never have to.
Time and condition make me the firm favourite to go first but, as Janet has said, on several occasions, you never know… and since she started saying that I worry every time she pops into town or even to our daughter's.
I want to be the first to go. Not because I am scared of being alone… as a matter of fact that would make it much easier for me… but because my lot has been drawn and I want Janet to continue to live a full and loving life.
I am not a fool… I know she will grieve sorely… and that there will always be a Dai shaped hole in her life… but I don't want her to fall into that hole… and I most certainly do not want that hole to engulf her, or make her freeze to the point where she cannot continue to live and love.
I want Janet and all those that love me, to remember, often and fondly… but I don't want to be sainted or leave them feeling dispossessed of the ability to genuinely enjoy themselves… first by moments, then minutes, hours and days… until I am a contradiction of joy and sadness but not a being that stops them from appreciating the fullness of living and all that that brings.
I am not Janet. I don't know how long it will take before some sort of equilibrium takes hold… but I have let her know that it will sadden me beyond description if she cannot move on with me beside her… walking together lightly, rather than my shadow weighing her down or holding her back as a burden of doubt, guilt and fear.
I am not prescribing for any of you… just giving a point of view from one of the favourite to go first, with the sincere hope that all of you can achieve this equilibrium sooner rather than later… safe in the knowledge that all of us MM'ers would wish the same for those left behind.
I don't want Janet to just have to pick up the pieces… although I know that that is inevitable to start with… I also want her to pick up the mantle of life… to help me to carry on living and loving through the joy and love in hers. 🙂
Dai.
Dai
You are not going to like me for saying this,but in the big picture of things,it does not matter what you would like,because at the end of the day ,Janet will continue to live,how she chooses to do it, it will be a measure of her self being!!!!!,Sorry DAi.
Find your fighting spirit , if you cannot get on trials,ask to have the drug any way,lets face it,you get to a stage and what have you got to loose,
On a personal note I have missed you sorely, not posting,your songs and lyrics ,and are occasionally confrontations ,I only wish I could be of more support,my love and best wishes to you and Janet.Eve
Dear Dai,
You sound so much like my darling Patrick and I have felt that your relationship with Janet in many ways is much like ours had been. If you have said to Janet all the things you have written I believe she will find comfort in your words when you have gone.
I am so thankful that Patrick and I were able to speak openly about our feelings and worries – he about his pending death – and me about how I would cope with my life without him. I strongly believe that being open in this way has helped me through some very difficult times. Patrick's words and jokes have been my "small white pills" jolting me out of misery and giving me the strength to get on with my life.
Yes it is natural to worry about Janet but I genuinly feel you can help by giving her some ammunition to fight the hard times – no regrets.
Love to you both
Tina XX
Hi Dai
Yep I and manymore know how you feel, but I intend to live long enough to see my youngest Grandchild get married 😀 and am sure My Sons will be having Kids for years to come Lol 😎 so I will never say never and long may My sons be fertile he he.
Good Luck with it all Dai and keep strong.
Tom "Onwards and Upwards" and waiting for more grandkids 😀
Hi Chrissie, I read your sad, sad email a few days ago, and wanted to think carefully before replying. I lost the love of my life, Geoff, just over two years ago to MM. He was only 52 – we'd been married for 30 years, were very much in love and we did everything together.
Geoff had been in total remission for 3 years before he went into total "melt down" in September 2009. I looked after him for five weeks in hospital, before his body finally gave up.
I, too, didn't know how I would survive without Geoff (or, more importantly, whether I wanted to survive) and was at an absolute loss as to how to manage. I just wanted to say to you that, two years on, after an enormous amount of loving care from friends & family, I have finally reached a point of acknowledgement about what happened to my lovely man, and have even found myself singing along to songs, something I thought I would never do!
I've taken the advice alluded to by others who have responded to you – take all the support you can get, take each day (or hour) as it comes, and – eventually – you might find peace. I also found counselling enormously helpful, guiding me through the awful experience itself, and then later on helping me to find my way through it.
I would be more than happy to hear from you, just if you need a listening ear or need to have a rant.
I can't say more – the experience is too huge for anyone to handle who's not been through it, but the offer is there.
You are in my thoughts. Alexis
This is a big thank you to all the kind, very special people who have replied and offered me comfort. David's funeral was beautiful and I was overwhelmed at the number who came to say farewell – boyhood friends, golf buddies, former colleagues,
close friends and, of course, my wonderfully supportive family.
In the days before the funeral I was in a kind if limbo but now reality has kicked in with a vengeance and I cry a lot at the thought that I am never going to see him again other than in my mind and that is where my difficulty lies. His poor ravaged body and his lovely face pinched in pain are what I cannot get out of my mind. Of course I have photos
but it is that last image which haunts me………
Dear Alexis,
Thank you for your comforting words. I am bereft – can't sleep, can't eat and I have had my daughter-in-law here since the day after David passed away, we go to bed and then after lying there crying I get up and roam about the house. David was given a prognosis of 2-4 years and everyone told me that chemo. made one feel much worse before getting better, so I truly believed he would go into remission eventually and we would have some quality time together. He managed to fight back for just 10 months and they were 10 horrible, pain-ridden months and that is what
I find so difficult to accept. I feel cheated……
Dear Dai,
I lost David on 7th January and I am bereft but I do find your sentiments commendable. How wonderful to be able to discuss things with Janet. I didn't get that chance because David never gave up hope, he was determined to beat the illness.
My son read these words at David's funeral and I think they reflect your feelings:-
"Do not shed tears because I have gone but smile instead because I have lived. Do not shut your eyes and pray to God that I'll come back but open your eyes and see all that I have left behind. I know that your heart will be empty because you cannot see me but still I want you to be full of the love we shared.
You can turn your back on tomorrow and live only for yesterday or you can be happy for tomorrow because of what happened between us yesterday. You can remember me and grieve that I have gone or you can cherish my memory and let it live on.
You can cry and lose yourself, become distraught and turn your back on the world, or you can do what I want – smile, wipe away the tears, learn to love again and go on"
I hope that, eventually, this is how I shall be……
Dear Chrissie
I am pleased that it was a beautiful funeral for David and you were surrounded by good family and friends, Its such a sad time ans I for one always am not sure what to say but am sure the words of comfort and Love that you have and are getting is a great help to you at this sad time.
I send My Love and Hugs to you and your Family, please take care of yourself
Love Tom xxx
My Dear Chrissie,
I can fully understand your feeling cheated… the rationale from the medics that MM is an individual disease is proven by the seeming inequality of prognosis treatments and outcomes. The UK funding body 'NICE', lays down the rules for treatments – i.e…
1) Frontline treatment (CDT – RCD etc.,)
2) SCT 1
3) Velcade
4) SCT 2 (for those with sufficient stem cells)
5) Revlimid
6) A. N. Other (dependant on previous treatments or current trials)
Most of us expect to get through 2 or 3 of these treatments… but some fail at the first hurdle… some struggle through the first 2 or 3 with quick relapses and others find success at each stage.
The regulars on here are a fine mix of the above… one or two have had the frontline and SCT and are still in remission a couple of years down the line… others, like me, have had 1, 2 & 3… having successful treatments but quick relapses. Then there are others like Slim & Eve who have struggles to get going… with the going being rough and disheartening… but eventually succeeding and moving on down the line.
Each of us have to deal with the hand dealt… but for you and David the hand dealt has been unkind in the extreme… not even getting to the first post. Yes, you have been cheated and I can't begin to understand or empathise with your situation. Sympathy and loving concern is all I, and others who have moved down the line, can offer. It puts my 'problems' into perspective and it makes me all the more grateful for the treatments and care offered by my medics and nurses.
God bless you… I hope you find some level of peace in the certainty that you were loved… and that David's love will stay with you for as long as you need it.
Dai.
I am so sorry to hear of your loss. My father in law died of MM on 23rd December. Like you I can't help thinking that the treatment he received hastened his passing, but he had to try. We as a family thought it would be better to not have it, but he couldn't be persuaded. In the end he only had 3 weeks of chemo and he was so ill that he could no longer go out of the house and the treatment stopped. He never revovered from that. 4 weeks after stopping treatment he was dead. I will always wonder if he would have been better and for longer without it, but I will never know. My loss is bad enough but I can not begin to imagine how it must feel to lose somone after all those years together. My heart goes out to you. Grief is a terrible thing and sadly sometimes we never completely get over it. I hope you have friends and family to give you the love and support you need at this time. Be patient, give yourself time and don't rush things. You will always have your happy memories and the love you shared together.
Hello Roisin,
My big problem is that so many things were left unsaid between David and me because he never contemplated losing the fight. It was always "we'll do that when I am better" – so much optimism. I know for certain that had the positions been reversed I would not have coped so uncomplainingly. I think I have now entered the 'anger' stage of grief. He was too poorly for me to take him to his last review appointment and I was told to dial 999 and send him in an ambulance. I refused to do this. Next day I requested his next lot of medication over the telephone and was told it was out of the question without him being seen. So I got him up out of bed and took him into a quarantined hospital. X-Ray showed no pneumonia (Wednesday) so we were given his meds. and sent home. When I arrived I turned my back to lock the car and the extremely strong wind blew him over. On Saturday he had extensive pneumonia throughout both lungs and that is what he finally succumbed to. How cruel was that? I am convinced that this series of events hastened his death and I feel anger and anguish. Will it ever pass?
I cannot help but feel that you are justified in your feelings of anger. It seems so unfair for things to have happened they way they did. All any of us want is to do the best for our loved ones, even against impossible odds. I am sure I would feel just as angry as you in your position. However you must be brave and face one day at a time. I am sure the anger will eventually subside, but it will take time. My heart goes out to you and your family. You will be in my thoughts.
Dear Chrissie,
The feeling of anger is normal and I am certain that it will pass, having experienced the same emotion for many months after my husband died. Pneumonia is a very common cause of death in MM patients, it develops very quickly so David may well have had the beginnings of it on the Wednesday but so insignificant that the x ray didn't pick it up.
My husband slipped into a coma before I could say my final goodbye and for many months I was convinced that the coma was drug induced. I was able to talk with the consultant about it and although I wasn't completely convinced I was hearing the truth I felt less angry for talking to her. Have you thought of councelling?It may help.
As Roisin says try to take one day at a time. I try hard to focus on the good times, I know it is very difficult when we have so many memories of our loved ones in mysery and pain.But all we can do is keep trying. After eight months I still bawl my eyes out Patrick is the first I think about when I wake up and the very last before I go to sleep and he is always in my thoughts. The positive side is I am coping better now, as will you.
My very best wishes to you
Tina X
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