[DaiCroParticipant]

Can?t sleep, won?t sleep.

Okay, Dex is still active with more in the morning but that's not it… not entirely… perhaps the 'can't sleep' bit but the 'won't sleep' bit is voluntary, forced even… I'm keeping myself awake.

Why? Because I'm mulling and mixing? thoughts and ideas and forum messages.

I don't think that I have ever said but I call my disease 'My My'. ?My Myeloma? on the one hand ?My My? as a conjecture on the other.

I have quite a few files about ?My My? on my laptop and on the whole they contain either banks of general or specific information… almost all of them useful or positive… none of them, not a single one, contains the heading of 'Bad News'.

'Bad News' doesn't need spelling out… it is not written in code, its there for all to see if we are willing to look and acknowledge. Multiple Myeloma is 'Bad News'… pure and simple – but we know that.

Most of the time this ?Bad News? is accepted and dealt with in practical terms and practical measures – it is our enemy, it is our foe – and we face it with amazing feats of fierce resistance, purposeful practicalities and a gorgeous, gentle humour? the sort of humour that has often been called ?Gallows Humour?.

To paraphrase ?Wikipedia?- ?Gallows Humour? is the type of humour that still manages to be funny in the face of, and in response to, perfectly hopeless situations. It arises from stressful, traumatic, or life-threatening situations.

We have has a spate of events, turn-ups, repercussions, misfortunes and most unfortunately deaths over the past nine months or so that have tested us, as a group of like-minded people, severely? culminating in a series of hard to take knock-backs in a short space of time? knock-backs that have tested our resolve? allowing the usually permanent shield of positivity to be compromised by the spectre of negativity, pessimism and general gloom… but only a spectre as yet.

There are many valid reasons why this should have occurred.

[b]a)[/b] The forum has grown and become far more active? both reactive and pro-active, since the move here from the old site.

[b]b)[/b] Where once we seemed to mainly trade in practical advices and experiences, we have grown more open and more inclined to discuss the ?stressful, traumatic, or life-threatening situations?.

[b]c)[/b] There are a whole bunch of us who have been together for a couple of years or more? a group of people who have formed a base for this new ?openness? and ?transparency? on the forum about the disease and how we cope with it.

[b]d) And by and large quite a lot of the ?Bad News? has directly or indirectly been centred on this group of people? forming cracks, tensions and even breaks in the ?strong links? of our chain.[/b]

There are of course several of this group still about? they lurk and linger but generally get on with heir lives because they are enjoying ?Good News? and the precious time that their ?Good News? affords them. We wish them well… but we miss them all the same.

I believe that we can revert to our normal, positive, practical and purposeful methods of advice and experience without losing sight of our openness and transparency and ultimate honesty.

We have chosen to be open? to show that we care? and that that openness and transparency and care and dare I say it? love… that we have demonstrated recently, is strong enough to keep the links in our chain whole and heartfelt ? it doesn?t have to weaken us at all? it just means that we carry on looking out for each other? supporting each other with both practicalities and friendship and refusing to allow pessimism and negativity to enter our doors.

That is my declaration of intent anyway.8-)

?Bad News? doesn?t scare me? although I am sometimes afraid I know that there is no need to be frightened? because I have a bunch of friends who know [b]exactly[/b] what I am faced with… and I know that their care and humour and willingness to share will stop me being afraid, diluting my fear with common sense and practicalities.

This I believe.:-)

As we were… and onwards and upwards 😎 😀 🙂

Dai.

[CarolBradley1Participant]

Thank you Dai – perfect.
Do you think it would be good to hear from people who are enjoying some of the ·good new· times or perhaps setting themselves a goal, big or small and how they get on? It would certainly help keep me motivated in trying to achieve my own little ·daily/weekly etc. goals. It can´t be all doom and gloom or this stupid illness is winning.

Carol xx

[eveParticipant]

Hi Dai
At least you have explained to me why I am always laughing,Never looked up the Wilki for meaning of Gallows Humour just thought it was me,always have a weird sense humour,some times i find myself laughing at the weirdest things, I just thought it was the scouser in me,plus the pills [magic].As long as I am laughing and not crying,that,s what is important to me.

Friends will come and go,on this site,that,s what life is about,its just sad fore the people they leave behind,but life does go on,you can either sit and mourn or pick yourself up and think,we have a duty of care to the living,and open the door to a different life,and slowly close the door behind you.

I hope I can be true to my beliefs. love Eve

[gina45Participant]

Hi Dai, your posts always make me stop and think. I admit i do come on here and its mainly when things are going wrong for mum and i need the support on here from you lovely people that understand.
My first port of call in a morning used to be facebook but now its here, its like picking up an newspaper and reading what is going on in your lives, are you ok? is anyone upset, sad news and even funny and happy news.
On another website i go on there is a heading "smile please" and everyone posts their jokes or funny stories. Its a bit of uplifting reading and as it says it does bring a smile to your face. Maybe we could do something like that.
Anyway as you always finish with Dai….onwards and upwards 🙂
Take care
Gina xxxx

[BADGERParticipant]

Dia

you always manage to put into words what many of us are thinking and are not able to put into print as well as you do. There will always be dark days but we should be able to put our shoulders back and face the world never give up,we must fight to live not give in and die;-)

Reards Jo

[comfortablynumbParticipant]

Stay positive, fella. Good Times.

Nile Rodgers from Chic has cancer – like us! Watch him play and it'll cheer you up!…

http://www.youtube.com/watch?v=mMqRxDZpWIg

[DaiCroParticipant]

Well I woke up tired this morning… but with a determination to remain positive and forward looking. Its all in the head I am sure but I felt very positive as we set out for the hospital and even drove for the first time in a while… it felt good and my left leg…( which was looking grotesque just over a week ago..). is looking more or less normal (though a tad larger all round than my right leg… but not by much).

I feel positive and I feel lifted… I have no doubts that the whole scenario is fragile but I am determined to make it as permanent as possible by being sensible and positive in and about all aspects of my illness and my approach to its treatment… especially to its treatment by myself… and that is what really matters.:-)

Dai.

[eveParticipant]

Good for your Dai
Life is for the living and its your duty to live it to the best of your ability,,even with one leg bigger than the other.:-P
Janet must be a very brave lady letting you drive,Slims on the Dex and once more has been band!!:-)I love driving LOL don,t tell Slim any excuse to get behind the wheel.
Tomorrow is another day.Eve

[mhnevillParticipant]

Hi Dai

Aren't you supposed to be on holiday? Hope the fact that you are driving again – hurray!! means you can get there.

Having been off line for a couple of days I just caught up with your post. Tahnk you, yourself, for being so open with us all. I used to read an American Blog by Jon Gordon, who used to say we must find things to be thankful for each day. When i remember it does help.

I was amused by you by your "My My". It brought a smile to my face as i remembered my little grand son dancing to Mum a mia (wrong spelling!) Perhaps you could compose a song to that tune "My, my , my Myeloma!"

Wish I knew how to put on those smiley faces – I'd add loads to this post.

Very best wishes.

Mavis

[tomParticipant]

Hi Dai

Am ever so sorry for being "Absent without leave" whilst you have been going through the mill 🙁

Well am Back 😀 and am here to chase you on 😎 but looking at your post's you chase your self 😀

Keep up the chase and its an "Onwards and Upwards"

Tom

[RozParticipant]

Thanks Dai,
Your an Inspiration to us all,
Sorry for adding to the bad news:-( I'll try and remember and get back to the good news:-D
Hope your having a good hol
Love to you and your family
Roz x

[Author]

Posts