This topic contains 46 replies, has 16 voices, and was last updated by 
zasrs 13 years, 1 month ago.
Dai
What a wonderful post. I loved it. Thank you.
Jean x
ILove my memories that are slowly coming back.
The man I married may have gone but his thoughts, ideas and all, will be with me forever
Do you know he told me he was going to marry me when he was a painter, painting my parents house.
That always makes me smile, how he knew, I'll never know. Must be something in the saying love at first sight
Love
Roz
Dear Roz
I am so pleased that you have some good memories coming back.
It sounds as though you were very much loved
Gillx
Dai Thank you so much for the poem. I never could get into the Lord of the Rings books so I would never have seen this.
Gillx
Min. What a wonderful discovery that was and probably painful too. I have read your post over and over again and, although it has made me cry buckets, thank you so much for posting your find.
After 40 years he is springing surprises on you and I am sure he will be with you forever.
Much love Gill xxx
Thanks Gill
I always remember him shouting down the road, "Put Kettle On Luv"
Then I'm going to marry you, we wern't even going out then he was a stranger.
Roz
Hello Dai
Just read Bilbo's song….wow made me cry straight away,such a descriptive song and so lovely.Thanks for sharing that.
cheers Paul
Dai,
You made me cry, mind you so does everything at the moment.
I thought I was prepared for all this.
How wrong, the reality is far worse than anything I imagined. Cannot motivate myslelf. Cannot sleep, cannot do much of anything and slowly going round the bend as cant remember much of anything.
Given that this darned cancer is incurable, why is there no help on here for those suffering from the grief that will inevitably occur?
Its almost like we all hope against hope its not going to happen and we prop one another up with hope which is admirable and needed depending where you are on the journer.
But there is no heading or subheading for the people who lose the final battle.
I feel that in returning now I should not be here as this is a site for hope and dreams of a future but when your world ends and life goes on for those still battling on, or left behind.
I loved being part of your world but but its just not good for morale to hear from people who have lost the fight.
I posted off the funeral collection and made over £800 thank you to the kind people who made that possible.
I think in the past two years I have had more than value for money out of belonging to the family of MM ers.
Battle on my friends but dont forget to enjoy and savour each day in case the next day is stolen from you suddenly and without warning
Min
Hi Gill
I love life!
Dear Min
I love life! but it is so important that we all face up to the inevitable.
Please don't feel you have no place on this discussion forum. Your contribution is a vital part of coming to terms with this b*****d disease and I am sure everyone will agree that if we can be of ANY comfort to you in these days of despair then please stay in touch and continue to post. Even if it is in the middle of the night there is sure to be someone on here who understands just what you are going through. Everyone grieves in their own way, some soldier on for months before the full extent of their grief hits them, others suffer deeply from day one but although it seems unthinkable at the moment ~ it will improve. You have suffered a very sudden and overwhelming shock with no time to prepare, your continued contribution to this site will help prepare us all for what is to come to everyone eventually, either from MM or other causes. Hang on in there Min – we need you.
Love Nettie xx
Dear Min
I have no idea of how you feel right now and for me to say sorry is pointless. I think that is a given statement anyway.
Please don?t leave this site. We all need people to ?prop us up?. None of us are so misguided to think that the ultimate end is not going to happen to us. I, for one, lay awake at night and try to believe that Stephen will be one of the ?luckies? who gets another 10 years. He?d be 66. OK 66 is not that old but hey!!.
You are right there is no part of this site for people?s loss. You ask why? Just maybe they need a ?Min? to start one. I am sure that it would be welcomed by all.
I am so pleased that you raised a tidy sum from the collection and hope that you stay on board with us all to carry on helping and supporting each other.
With love from Gillxxx
My Dear Min,
Like Gill's wishes for Stephen I would like to think that I could have a 10 year tenancy with MM… I was 54 and 4 months when I was diagnosed with cancer, I'll be 58 on Xmas Eve… which would make me 64 when the renewal comes up… I'll settle for 62… I've set my sights on 60 in the first instance.
My Kappa Light Chains were 3,500 when I reached Nottingham. I arrived in our small village wrapped in 2 duvets and several pillows in our car driven by my brother Roy with Janet in the front seat offering succour and sweets throughout our journey. We made one stop… where I peed into a plastic orange juice carton because I knew I could not make it though the services to the toilet. One quick stop, a take-out coffee then away to a strange new world looking for a miracle.
We left my beloved Fishguard followed by an extra-large van driven by my youngest brother Stephen, with his son, my nephew Ricky riding shotgun – the van crambed with our belongings… they made a second trip a week later, from Swindon to Fishguard, to Aslockton, to Swindon… both times.
My journey, in the widest sense, was akin to the flight into Egypt. After my well documented horrors, under a certain Doctor from Swansea who refused to either investigate or treat, my GP found me an oncologist in Nottingham… a name and an appointment… and on the strength of the I wrapped up my affairs in 3 weeks and made the desperate dash for help.
And it was desperate Min… it was a matter of fight or flight… so I compromised in my own way and flew… taking my fight with me… because my fight was against the disease, not incompetent medics.
On the day of the move 12 of the Lifeboat Crew and several other friends from the Folk Club (all good customers and mates from the pub/restaurant that we had just been forced to give up) turned up to strip and load… my best friend Steve, the inshore boat skipper and bodhran drummer walked away wiping tears from his face because he couldn't say goodbye… he had lost both his parents and his sister to cancer over the previous 10 years and he 'knew' he would never see me again. We swung around the headland above our house, looking out over the Irish sea as we turned inland for Carmarthen and the M4 beyond… I never thought I would see the sea again… or Steve.
Six hours later I managed to walk the 5 yards from the car to our new, unseen bungalow with the aid of 2 sticks – determined not to be carried and sat down in my adjustable chair which was first in and wired for duty. Four days later I had my first appointment… ten days later, after a battery of tests and scans etc., I had been diagnosed with MM, had a joint meeting with my oncologist and 2 consultants from the Haematology team… at the end of the meeting the Haemo's took over and I was off… and onto CDT within 3 days.
It was a chaotic, tumbling turmoil of a time. I made my mantra… 'Whatever It Takes' and went for it. I started my CDT at the end of June… by the end of September I had reached 'Complete Response'… by the end of October I was declared in 'Complete Remission'… not a trace to be found.
I wanted to reach Xmas… and suddenly I had a chance of the 10 year deal.
I was told that my CDT results put me in the top 10% and made a 3 to 5 year remission quite promising… but the 6 intense sessions of RT overkill for the tumour on my vertebrae also destroyed most of my Stem Cells… the harvest was extremely difficult and even with 2 extra 'Plerixafor' shots I only managed 2.1 million cells… into 14 preservative filled bags… to my mind my STC never had a chance… at least I got 10 months. The sudden relapse and accompanying secondary tumour knocked us both for 6…. 12 even… but Velcade has done its job… the tumour disappeared, my numbers are at 0 across the board, my HB is at a 4 year high… I have hope again – hope of reaching 60? … perhaps, if Revlimid is as effective (I can't use the word 'kind' about treatments) then who knows? I might even make the 62 mark… shhh.
And during this 2nd awful period of my illness, a period that I have survived with a little hope, I have watched, read (literally and between the lines) and listened as Michael, Patrick, Gaye, Gordon and your wonderful Peter slipped away… all the options and snippets of hope denied.
I am not frightened of dying Min, truly… I am scared, I admit… but mostly I am worrying about the pain that my going will leave behind. For my wonderful Janet whom I adore completely and unconditionally… and my children and grandchildren… I agree with you wholeheartedly… death is a final curtain… but those left behind have to take the stage every day and every night, public and private as they try to fill gaps, make sense, reach out… and It is my job to try and soften that leaving as much as I can… but for those that literally died fighting it was difficult… because they were still reaching for a little more hope and time and breathing space… which never occurred, which never materialised in a recognisable form. Grief, and the counselling needed to help the bereaved as much as possible, should be a major part of the MM journey. Of course it should be available to all… but MM is known to be incurable… however polite and circumspect the medics may be they know that we have a finite time… and to my way of thinking MM bereavement counselling should be built into the medical action plan… because of the inevitability of the event.
You must do as you see and feel fit Min… but if you disappear I will be mortified… not because of your absence by choice of release but because I know that I will be feeling your grief… wherever you are, whatever you are doing… because you are my friend… and you are in pain… wrapping yourself in duvets and pillows that don't really comfort or console… because the voice on the other side is silent… because however soft you lay you will never feel the 'spoon'.
But we are still here, for as long as you need us… let your anger rip if you will… wail, cry, shout at the moon… but let us hear it… and then see if we can channel it… 'it' being our determination to get this site to recognise 'Grief' as a section… a section where we can learn from each other, teach, advise, prepare… as an organic, blossoming movement for recognition in the consultant's clinics, day-case units and hospital wards… even the GP's surgery… perhaps especially at the GP's surgery.
I need your grief, I need your friendship… so does Janet, even if at this embryonic stage is is not yet tangible… but the time will come.
But most of all I believe we need each other… to see each other in the truth, honesty and raw clarity of the upsides and downsides of this short life sentence which is Multiple Myeloma.
And what's more, I like you… very, very much… and I would miss your 'voice' and your courage and your sense of proportion – yes, I would miss 'you' most of all.
Really, you don't have to offer anything to stay… just be… and that will do for me.
Whatever you decide to do… please don't give up.
Dai. xxx
Hi Min
I've sent you a private message. Please don't leave the site. I know how you feel so please get in touch about anything.
Love Roz
Dai you have put all of that in an incredible way. I so hope that Min reads your message, and all of the other posts and stays in touch.
I feel that, although it is this b****rd illness that brought all of us together in the first place, we have all become friends. As well as discussing mm we go further. Whether it is stories of our children, grand-children, pets, annoying partners all sorts of things that are interesting, sad or funny.
If Min feels that she wants to walk away from mm I would understand completely. But if she decides to stay that would be great. After all I continue to need advice regarding my poopie:-)
My Dearest Min
I understand your feelings about not wanting to stay on this site, Dai has put the words of all of us so Eloquently (Spelling ?) that all I can say is please take time out if you need to but please we would love you to stay.
You Min are part of my "Online" Family and your pain is my pain, your joys will be my joys I understand that this Darn MM is terminal and am sure we all know I am also sure that I would want you to help Elaine as and when My Time comes and this Bl***y MM takes me.
I hope that none of the above post upsets you Min as you know its the last thing I would do Just looks differant when wrote down?
I hope you stay Min and if you need to do a proper cuss then dont be afraid to use my ear and that can be found on t.lappin1@ntlworld.com you can email me when you are ready
Love and Hugs Tom xxxxxx
My Dear Friend Min after Dais lovely message to you there is very little to add. Please know that although Peter was the mmer you were and are the person who made so many friends on here.It feels wrong to pressure you to stay , if I were in your shoes I am not sure what I would want,but Min you would be missed by so many people! I can only imagine how lost you must feel at the moment , neither family or friends can fill the gap Peter laft in your life, but we are all here for you My biggest regret is I live down south if only I were nearer and could call in for a cuppa and chat to put the world to rights but I am on here for you Min Min as one of your many on-line friends I really hope you stay in touch but at the end of the day you must do what is right for you Lots and lots of love Bridget x
Time to get back to the subject matter of I love…… you all.
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