[GillParticipant]

So sorry you feel bad I wish that I could remember how long Stephen felt grotty, but he's feeling sort of OK now. Fingers crossed that all goes well Gillx

[GillParticipant]

OK I have to know what is Bara-Brith xx

[GillParticipant]

Lovely to hear some good news Lorraine. So pleased for you Gillxx

[GillParticipant]

What the heck!! Enjoy what you can, when you can xxx

Interesting that it is all females posting on this topic I wonder if the men don't notice or bother about weight. I do hope so then Stephen won't notice how broad in the beam I have become:-)

[GillParticipant]

I have no medical knowledge or training whatsoever but I cannot understand why a picc or hickman line is not fitted as a matter of course. Stephen (mm person) has had a line ever since needing regular bloods taken and medication put in. His current line is attached to his chest with 3 tubes coming out of it (no restriction to any daily task). One for drugs in, one for blood out and the third?? Can't remember. All colour coded and not uncomfortable. He has a site op dressing which is changed every couple of days and can shower etc without a problem

He has a "doughnut" tiny felt type dressing underneath the whole thing and if it should change colour it means there could be an infection and it can be checked out straight away. Clever or what?

It must be aweful to keep having to go through the -find a vein – dig a needle in – oops start again

PS Dai CR?? BRILLIANT

[GillParticipant]

Here Here I was wondering if she is OK I too have tried to contact Bridget away from this site and got no response

Hope all is OK Gillx

[GillParticipant]

Hi All

I have thought about what I posted and have realised that I am not actually "rude" (at least I don't think so) but maybe have become too honest.

When asked by the server in a multiple eatery where we had breakfasted during a long journey (the one where a chef is tiny) "how is your meal, everything OK?" Instead of my usual reply of "Oh fine thank you" I said (with a smile) "No it's c**p. But then it always is and it's our fault for eating here. I know it is not your fault and your service has been really good. Thank you"

When I do not get a helpful reply from a shop assistant or an internet voice after I have been patient and polite I ask to speak to the supervisor and get them to sort out whatever the problem is. I am learning that life is too short for anger but also too short to spend hours smiling and not demanding basic service when that is all you are asking for. On the other hand I do ask to speak to a supervisor if somebody has been helpful and gone that extra mile and let the supervisor know that I have had a great service from the person dealing with me.

Maybe I am starting to mirror our friends across the "pond" Americans demand service and respect the people that give it.

Gill x

[GillParticipant]

So pleased you managed to get a decent quote I hope you have a great time.

Just to add for info that it is also worth looking at MIA and we found that we were insured by our general health insurance for travel. So do check any insurances you already have

Bon voyage Gill

[GillParticipant]

I have only just caught up with your post of Amy. I have fond memories of listening to very talented tribute bands on various holidays. They always seemed to be having a fun time as well as entertaining the holiday makers. She sounds really good and I hope she is having a great time.

Fingers crossed that you get over to see her soon.

Love from Gill xx

[GillParticipant]

Hi Sue

My mm husband, Stephen, came out from hospital over 2 weeks ago after receiving his 2nd SCT. He has not been very well since but we are plodding on.

Trying to get him on a Bendamustine clinical trial was mentioned after Stephen relapsed following his first SCT and his consultant was not aware that he had further stem cells frozen.

Sorry to waffle and talk about Stephen's situation but really just wanted to say that we (rightly or wrongly) have so much faith in Stephen's medical team that we trust them to come up with the best option for him at what ever step of this horrid journey he is at.

I agree with Min that "desperate means call for desperate measures". This cancer is quite unusual and nobody knows yet how to kick it into touch.

I hope that whatever path you and Michael decide to take it all goes well for you

Gill xx

[GillParticipant]

Hi Sarah

Sorry to hear that Gordon's second SCT has not done the trick. Stephen is seeing his specialist on Friday to find out if his second SCT has helped.

He is feeling quite unwell at the moment so I am worried that the news will not be good. I hope Gordon's new drugs help and wish you both luck
Gill xx

[GillParticipant]

Sorry Dai

I got the gist of your post wrong and thought you wanted an exact outcome of the procedure (I shouldn't post so late at night:-/

I hope all is going well Love from Gill xx

[GillParticipant]

"I just would have liked someone to have sat down with me and to have explained what might or could happen during the treatment and what, if anything, we could do to either improve the conditions if and/or when they arose… its not to much to ask… surely?"

I think that this b***tard cancer is so unusual and so individual that there is nobody that realy knows. So can they tell you what to expect??

Easy for me to say (it's my husband with mm)

I am hoping that by the time you read this you will be feeling much better and look forward to your posts Gill xxx

[GillParticipant]

I too was hoping for posts from Jet. I think she was going through the mill about now. Fingers crossed for her Gill

[GillParticipant]

Hi from one Gill to another. My husband has mm and I learnt very early to read posts and advice on here and not trawl the internet.

Gill xxx

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