[DaiCroParticipant]

[b][quote]I'm a fine one to talk… sleep, or rather the lack of it, is the bane of my life… Cousin Dex doesn't help but I know that a good night's sleep… a good seven hours or more without waking, is as good for me as any medicine or therapy on offer. [/quote][/b]

An here we are, a week later, feeling sick with lack of sleep and 'Dexday TM' in four hours time.

Any secrets to share… I'm getting to the end of my tether. 2 sleeping tablets on Sunday gave me 7 hours straight… and then I couldn't wake up yesterday… until I came to bed. I know from experience that sleeping tablets (at least the ones I'm on) only work for a short wile and then I have to endure withdrawal symptoms.

Ho hum.

Dai.

[DaiCroParticipant]

Hi Andy, I love your smileys.:-D

To my shame I didn't know Nottingham held a beer festival.:-0 When/where is it held? We live in a village in the Vale of Belvoir… a few miles north of Bingham and equidistant (12 miles) from West Bridgford and Grantham. We skirt around the city to get to City Hospital and only pop in to the main shopping areas about every 4th visit.

Choosing my guest real ales was an eternal joy… usually done about 11pm with 2 or 3 friends (and real ale gurus). We would end up with one for me and one for them… but occasionally I would let them choose both (meaning my choice concurred with theirs).;-)

The amount of research (laptops, CAMRA newsletters, books etc.,) was ridiculous… but it became a ritual that made grown men very happy… like kids being let loose in a sweetshop. Although the chocolate stout was a mistake never to be repeated.>:-(

Dai.

[DaiCroParticipant]

Back to the drawing board.:-D

Dai.

[DaiCroParticipant]

Okay, loaded up photo's to Flickr… copied an url (or at least I think I have)…

Little mountain… click…[img]http://http://www.flickr.com/photos/43084913@N02/7034899025/in/set-72157629715206275[/img]

and…

[DaiCroParticipant]

Ah, so you need a website or an online cache to store your images?

Dai.

[DaiCroParticipant]

Hi Paul,

Velcade worked for me (at least while I was on it) but it was not the most pleasant of experiences with several nasty little side-effects issues/ Sense of taste was one of them… out of the window, I could have been chewing cardboard… but like you my buds revived during the rest week. :-/

I see Velcade as a bolt-cutter… it knocks mm for 6… but only just long enough for other treatments to be used (i.e. an SCT).. and not a viable long-term remission bringer. Carfilzomib, Velcade's little brother, seems to be another kettle of fish… treatment lasts 18 months, with few side-effects and apparently it knocks mm out of the park and into the river.. allowing maintenance therapies, such as Rev & Dex, a good innings.8-)

Enough of the cricket metaphors, I'm a rugby man.;-)

Dai.

[DaiCroParticipant]

Hi Andy,

I really hope that Rev & Dex do the trick and get your pp's down to a workable level. Have they indicated the maximum allowable before treatment?

Before leaving Wales to seek refuge in Nottingham for mm treatment I was a 'Folk-Tales' CD story publisher and erstwhile Landlord. I feel proud of my achievement of being recognised and certified as an award winning (CAMRA & the breweries) 'Real Ale' pub… including a mini-festival of real ales at the annual 'Fishguard Folk Festival'… with a choice of 20 real ales. I always had at least 2 'Guest' real ales during the extremely quiet winters and at least three during the summer… as well as my 'house' real ale, 'The Reverend James' (ABV 4.2).8-)

I had 2 small glasses of wine last Xmas and 2 more the Xmas before… and that's it for me. I take a total of 120mg of time-released morphine as well as Gabapentin for my PN.. and as I understand it alcohol is a 'no-no'. If anyone knows different I would be glad to hear about it.. I would love a pint or two of real ale again… although, to be fair I have always had a low alcohol threshold… 4 pints and I am under the table… still…;-)

Dai.

[DaiCroParticipant]

I'm with you on this Eve… lessons please Elizabeth. xxx

Dai.

[DaiCroParticipant]

Hi Eve,

How I managed to get through five full days on the harvester without needing a No.2 still escapes me. I am usually quite regular, (one of the things Janet found attractive about me when we first started courting – well, bless her, there wasn't a lot of choices) – I am convinced it was mind over matter (similar to miners who smoke a lot… they can go a full shift without thinking about a cigarette but the second they reach the pit top the craving comes pouring back).

Let us know as soon as Slim gets his dates… scary but exciting times.

Dai.

[DaiCroParticipant]

Thank you Jean… I will check the link… May 27th 2008… perhaps an update is in order but it is part of my plan to upload a whole album's worth of my all-time favourite self-penned/collaboration songs.;-)

The process was quite easy on this occasion.. Neil sent me his basic lyric… I 'tidied' it up, wrote the bridge and the main part of the chorus and then wrote the music and performed. Neil liked and so it was a keeper.8-)

I have about 20 collaboration songs in total.. nearly all US or Canadian friends.. its a satisfying process but it can be difficult if someone gets a bit 'precious' about certain aspects… in which case I give in but strike them off my future plans.:-

Regards:-)

Dai.

[DaiCroParticipant]

Excellent news Eve & Slim… at last something positive has come your way… enough for 2 SCT's.

I started my harvest schedule with a squeaky bum… by the end of the week, after 5 days on the m/c and 2 midnight returns for Pleraxifor (sp) injections, I just scraped in with 2.1m… and I had to wait until Monday am to find out! I was so relieved and grateful that my squeaky bum was farting the Trumpet Voluntary… The Prof said he would have gone ahead with 1.8m… so its nice to know that there is a little leeway.:-)

I only got 10 months from the procedure… and therefore considered a failure but I cannot fault the care and effort, release of funding for the ultra expensive Pleraxifor jabs and the perseverance and determination of all the staff in the DayCase Unit at City Hospital, Nottingham. I am so glad to have them onside… regardless.:-)

2 SCT's… use them well grasshoppers… may each give you time aplenty for whatever you want or need to do… I feel so grateful that after all you have been through that you have finally reached this stage… with backup.8-)

Dai.

[DaiCroParticipant]

What's your pp score Andy? Any movement at all since diagnosis? Have the medics indicated a figure for going ahead? Its good that there's no upward movement anyway… it sounds like your pp's need some sort of a kickstart in the right direction… perhaps you can get them to lick the equivalent of a PP3 battery.;-)

Let's hope the Rev & Dex do the trick so you can move on to pre-harvest.8-)

Best wishes.

Dai.

[DaiCroParticipant]

Good for you David… now put mm out of your mind until the few days before your next consult and enjoy your strength and health.8-)

Regards:-)

Dai.

[DaiCroParticipant]

Hi Steph & Andy, may I wish you both a 'wish you didn't need to be here' welcome… but here you are and so are we but in no time at all it will be just 'us'.:-D

It's never 'only me', there is nothing new, from the most personal of side-effects (toilet troubles etc.,) to major procedures… there is always someone just ahead of you and soon you will be answering those just behind you… because experience is all.8-)

Welcome.:-)

Dai.

[DaiCroParticipant]

Thank you Nettie,

Like your sterling and exciting jump, which left me breathless, it shows that we are more than the sum of this damned disease… that we have interests and skill-sets and achievements beyond those of suffering stoically.
😐
I wish we could get more people to use the off-topic to share their interests etc… 😎

Dai.

[Author]

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