Thanks Jackie. I am planning lots of stops .. trouble is, it's the stops that can be a killer as getting in and out of the car is a bugger. I've got no choice .. my heart tells me I need to go and I've GOT to do it somehow.

Am hoping it will be better than last week where we went down on the Wednesday and came back on the Thursday. I was crippled for two days after and in bed .. and got a good telling off from the Doctor.

She has given me Baclofen instead of Diazepam to help with the spasms - please god I wont get one driving .. lol. Could be dodgy!

Up to the utmost on Tramadol .. in fact I was taking too much 150mg every 4 hours when the max is 100mg every 4 hours .. but this helped me with the journey. Will have to see how I go this morning.

She offered me Zomorph again but I said this made me sleepy which is what I DON'T want .. (though the doctor doesnt know I'm driving or she would not advise it). The Tramadol seems to made me buzz .. lift my spirits somehow, and this helps me cope with the constant pain.

So grateful for Tootle as I can keep wriggling about in the car seat when my back starts locking as I dont have to deal with cluthces and gear sticks.

I think Pauline will have to prise me out of the car at the other end .. though to be honest, I live on adrenaline there ... I'm thankful I'm not dying ... what pain is mine, to that?

I don't know how I do it either Jackie .. I love driving, I think that helps .. I love that I still have my independence. If I was unable to drive it would depress me so much.

I've a nice cozy bed for when I arrive.

Ray is now in his Hospital bed .. put in their main bedroom with their double bed at the side and his commode at the other. We are hoping to get him catherterised today so that he doesnt need to get out of bed as this is causing great agitation and pain.

Please god, he can stay at home now.

Mike has done him a CD (Ray LOVES music) and I am going to play that to him later today and Mike has written down all about the tracks he has on there and why and I will read it out to him even if he is "asleep" ... I believe the last faculty to go before death is hearing.

I feel your love around me like a gentle hug. Thank you everyone.

Hi Karen

Take care hun, I know I couldn't do such a long drive and I love driving too but that was a long time ago!
I'll be thinking of your family through this tough time. It's so tiring and stressful and this doesn't help with pain levels and yet there's nothing you can do.

Lots of love

Sinead xxx

Watching this proud man so utterly diminished by this disease is horrible. So sad.

Hi Karen,

It's so so hard but I bet you're happy to be there and i bet Mike is happy you're there too.

I'm thinking of you... I hope you've recovered from the drive I was going to text you until I saw your message.

Take care

Sinéad

Hi Karen- I just write to provide a long distance hug and let you know I am glad you are there at the side of Ray and Pauline, giving of yourself in such a profound way. May God hold all of you in tender embrace at this most difficult of times.

Hugs abounding,
Mark56

As a former Hospice and home care RN I would like to give you some advice please! I found with my patients who had out of control pain, (and with my own monster pain) At first when your pain is finally controled you are BOTH PHYSICALLY AND MENTALLY exhausted, I told my patients that yes at first you will be tired/drowsy from the meds, let your body rest, let your mind rest! Take several days to let this occur! Take the meds on a fairly regular basis, then after that time you will find you are more alert, more rested and your pain will be better managed! Several of my patients could functon "normally" and the amount of medications they took at first blew my little RN mind, however after watching this happen over and over again, I tested the theory out on me, myself an I even. I found that I could function on medication that I had originally rejected due to my profession and my daily driving (I averaged 200-250 miles daily not including the to and from work) Now my doctors DID NOT want to hear that I was driving with my medications on board, BUT they did agree that I "looked better" then I had in years! Now I only need the meds during flairs which seem to be occurring more and more frequently.
So please try the better pain management meds! Give them at least a 2-3 week trial, and if you need advice, or have concerns seend me a PM!

z

Ray died in our arms yesterday morning at 6.45. I told him we were there, that we would look after Pauline and God Bless you Ray.n

So sorry to hear about Ray, may he rest in peace,

Love to all, and we are all thinking of you and your family through this sad time, if I could be there I would to give you a hug,

Sinead xxx

My deepest condolences, dear Karen.
May God bless you and your family. You've done a wonderful thing by giving of yourself during his last days.

Bless you and be painfree as you honor his life with all of the family and friends who cared so much...

Rae

One final breath and peace arrives
the Lord takes home one weary worn
and brings embrace to ones left in this life
comfort comes though loss is borne
the thoughts of memories bring some smiles
as words are shared and photos shown
the record of blessings from this dear life
we move along and bear the grief known
and carry the treasure of the one now gone
deep in our hearts, for he'll always be along.


Karen, may your family live through this time filled with recognition and warmth of the blessing Ray brings even now into your lives.
Many warm hugs,
Mark56