[MicheleParticipant]

Hi Charlie

Just to say that I have sent you a couple of private messages. They should be in your "inbox".
Michele x

[StanstanParticipant]

Hi Michelle

Thanks so much. Where is my inbox? Are the messages in with all the others.

Best Wishes
Charlie

[StanstanParticipant]

Thanks so much Michelle. Feeling a bit down at the moment but you have made me feel more positive, just got to get through this and accept it. Looking forward to when the SCT is over and hopefully be normal again.

Dancing with Myeloma.

Charlie

[tomParticipant]

Hi Charlie

Well it looks like ur feeling a wee bit rough and scared ?

Well I was on CTD in 2009 leading up to my SCT in December 2009 and I have to say it wasn't a walk in the Park but it is a "Doable" I started in feb 09 with CTD and went on sick May 09 and that was untill may 2010 so just about a year when I was "getting Better" and Charlie I will say it ws "Pain Free" all the way through except the BMB and we dont have them that often 😀 . I am now back at work and booking Holidays and the stuff near as I used to do prior to my Myeloma.

When you go into hospital leave your dignity at the door, they have seen it all before and will make your stay as good as it can be.

Tom "Onwards and Upwards" (stick with it Charlie) x

[MicheleParticipant]

Hi Charlie

If you click on your own name to go into your profile page, the word "messages" is on the right hand side. Click on that and it will take you through to your inbox.

🙂

[StanstanParticipant]

Hi

I am Mary – Charlie's wife. Charlie was rushed into hospital in the Isle of Wight on Friday. He got up in the morning and collapsed. He collapsed again in A & E and they all rushed to resucitate him. It was frightening. He is a lot better now but as it is the weekend, we still have no idea why this happened. They have stopped all his medication. He is supposed to see the consultant at Southampton on Tuesday, don't think we will be going.
He should be a starting his 4th cycle. Will this delay his SCT? Has this happened to anyone else.

Totally fed up with Myeloma.

Love Mary 🙁

[MicheleParticipant]

Hi Mary

I wondered how you and Charlie were getting on.

It must have been very frightening for you and I'm glad Charlie is a lot better now. Had he been having any "funny turns" prior to collapsing?
It could be his body rebelling against the CDT cycles but you've also got to consider that it may be something not connected to his Myeloma at all.

I presume the staff in A & E knew about his current treatment and took that into consideration when trying to work out why he'd collapsed. Did they contact his specialist in Southampton to tell him what was going on?

I'm sure a solution will quickly be sorted and Charlie will be back onto the right track again in a day or two. Meanwhile I hope he can rest. Did they keep him in hospital or is he home again?

Take care for now.
Michele x

[StanstanParticipant]

Hi Michele

He is still in hospital in the Medical Investigation Unit. Really fed up. He was fine until Friday morning. I don't know if they are in contact with Southampton, I have given them all the details but have not seen a doctor yet. When they were banging his chest, I was frightened they were going to break something. His chest is a bit sore now.

Hopefully we will find something out tomorrow, when the doctor comes round.
Are you OK? I am sure women handle this better than men.
Love Mary:-S

[MicheleParticipant]

Hi Mary

If your MIU is as good as the one in Poole Hospital, Charlie's in a good place as they will definitely keep a beady eye on him.

It will be good to find out more tomorrow. Make a list of questions you want to ask because when those doctors do their rounds they're fast. Keep them there until you're happy with answers and don't be intimidated by them!

I'm really well at the moment thankyou. Nearly 8 months since my SCT and I feel totally normal again. Plenty of energy and not on any drugs. (apart from Zometa every month).

Look forward to hearing your news tomorrow.
Michele x

[StanstanParticipant]

Wonderful Michele

Wish we were at the same stage as you. Keep Well.
Shall let you know tomorrow.
Love Mary

[eveParticipant]

Hi Mary

Sorry to hear about Stan,Slim was about 4 cycles on CDT,when he was rushed into hospital with septic pneumonia ,9days ITU 22 all together in hospital a weeks rest then back to next cycle tough but doable.Lot of damage to lungs holes and mass blood clots,only to be told at end of 6 cycle it had not worked and his condition was worse,then went on to Velcade. So I do understand you being fed up.
21 months down the line,and one SCT on the way,been to France and on a cruise and hope to do New Zealand for Christmas,This is the time for you to be strong,tell him he can do it.
Steroids mask infections if you have a blood pressure machine it is a good way of telling his condition,worth investing,you do have to keep your eyes on them,as they do not realise some times that they are getting confused,so check,temp,blood pressure every day if they do not seem themselves.Eve

[VickiParticipant]

Hi Mary

Sorry to hear about stans collapse. That must have been very frightening for both of you! It seems a long time not to have more information…..push them for some !, Colin always tells me I'm too pushy, but knowledge and an understanding of what's going on, for both your sakes is really important.

You take care of yourself too. I know it's hard and you,like i have felt in the past, feel helpless. You give our best to stan and he will soon be back on the road towards SCT and a long long remission 🙂

Vicki and Colin x

[StanstanParticipant]

This site is so cool isn't it? I have been feeling dreadful over the past couple of days. My daughter said to me, go on the Myeloma site, it is there to help and it does. Eve, you must be strong, I feel like a wreck at the moment but hopefully I can be like you, positive and suportive. You make me feel like there is hope at the end of the tunnel. I have a blood pressure monitor but can't get it to work. I shall read the booklet tomorrow. I really don't think we have been taking this illness as seriously as we should have. He seemed fine. Re-roofing the shed the night before he collapsed.

Vicki, I don't feel we are assertive enough, we just let things ride, maybe we should get a grip. The doctor has given me these pills but I don't want to take them, I am not into pills at all and he said, increase them to 5 a night. I am a wreck but not happy about that at all. I think I just need to scream, shout and cry.

Roll on remission!!!

Love Mary x

[jmsmythParticipant]

Hi Mary i'm so sorry that Charlie is having such a terrible time and wish him a a quick recovery. I used to say "the light at the end of the tunnel is another blo**y train coming. But it's not its a light. Come on rant, rave and scream if you want , most of us have been there. As Vicki says take care if yourself

My best to you both
Love Jean x

[StanstanParticipant]

Thanks Jean

What would we do without you all? It is so good to chat to everyone that understands.
Deep breath for another day of hospital visiting. :-0

Love Mary x

[Author]

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