[eveParticipant]

Hi Everybody

I wonder if any of you carers can help me out.
Slim see,s the consultant on Friday,he just coming to the end of his 6 cycle on CTD trials. I know every thing is going in the right direction,as I make sure I collect all paper work concerning results,the only one I do not know about is latest bone marrow results.:-)
So why do I feel apprehensive,have not felt like this before when seeing consultant,have any of you carers felt the same at this stage.it is so unlike me,as I am usually very prepared,even when Slim was first diagnosed by doctor,it did not come as a surprise.
is this normal. love Eve:-S

[jmsmythParticipant]

Hi Eve

I am so glad to hear that things for Slim are looking up as I know he has had a rough time. Eve there must be something in the air!!! I came on to post something similar. We have just come back from a cruise with 10 family members. We had a fantastic time. On previous holidays, Frank slept a lot and was not really interested in anything going on. This time he was the life and soul of the party and never stopped the whole time. He was up danceing and was the last one to go to bed – we even entered a Mr an Mrs competition and made complete fools of ourselves!! I have not seen him with so much energy. One of our sons who was with us could not believe seeing his dad having such a great time. So, why have I been crying and so apprehensive and feeling scared since we got back? I have it in my head that this was the last time we will be away. It is completely irrational but I cannot shake this awful feeling. We don't go to see the consultant until 10 August and I have convinced myself that we are going to hear bad news.

I will be thinking of you and Slim on Friday and pray our thoughts and feelings are stupid and irrational. If anyone else out there has experienced anything like this, I like Eve would be grateful to hear.

My best wishes an prayers willl be with you both.

Love Jean xx

[eveParticipant]

Hi Jean,
So glad you managed a good holiday,good to get away from everything,are you sure you just have not holiday blues,specially as you had such a wonderful time,it must hit home coming back,When we go away,coming back is hard,Lovely to see the kids,but then I want to go off again in motorhome.:-S

In theory I have no reason not to be positive,and I am not thinking the worse I am wondering why I do not feel either of those things,I think possible it is because i have no control over the out come,and Slim is coming to the end of his stage of treatment,and he will start on another path,depending how the team consider how well he has done!!!

Life goes on and at the moment,some of the post on here is making me realise how lucky we are,my thoughts are with all the people on here going through a rough patch.Were is Tom with his onwards and upwards,growing his
cucumbers LOL.:-) Eve

[BADGERParticipant]

hello Jean

so glad you had a great holiday it can really buck you up you must have been glad of the sunshine as the weather has looked awful in Northern Island the last couple of weeks,Really glad Frank was on top form I had a giggle at the Mr and Mrs it must have been a good laugh:-)

Love Jo

[BADGERParticipant]

Hello Eve

I hope Slim has good news on friday, I always get apprehensive every time I go to the clinic I feel like its the sword of damacles hanging over my head silly i know but thats just how it is

Love Jo x

[MinParticipant]

Hello Eve
I dont think the apprehension ever goes. I alway keep everything crossed when we go to clinics but my method is expect the worst and if its better its a bonus if its as I expect its not such a sad great shock.
Fail to prepare …. prepare to fail… Ever the pessimist never the optimist .
Good news is always welcome of course but in our case it has been in short supply of late.
I love to hear good news stories just hope one day we will be one of them.
How do I cope, I try to do anything that will take my mind off it. Because I know I will obsess about it if I dont.
Kitchen sorted know what I am getting and where I am getting it. followed your advise and buying all my appliances myself as well as wooden worktops. My hearts desire ! Thank god I have the time to do the research now.
Where did I find the time to go to work. More importantly how on earth did I manage to get up at 6-30am when I cant get out of bed before 9am!!!
love
MIn

[zasrsParticipant]

Hi eve

I love Joe,s sword of damacles! Think i will take that with me when i go to the hospital today!!
I am always pesamistic it makes the weenist scrap of good news mega fantastic. Gordons hb went from 7 to 7.5 and his neut from .5 to .7 after blood platlets gcsf etc i was thrilled, the results are trully pathetic after all that treatment!! But I quess they are going the right way i will be very apprehensive again today it is the only way i can cope.

Min your kitchen sounds wonderful, i think we stopped working about the same time, i often think how did i ever have time to work:-)
love to you all
Sarah xx

[eveParticipant]

Hi
Looks if Apprehensive was the right mood for me,came away feeling what a waste of time,and lots of conflicting information,when I asked for statics ,information not forth coming,on another point told bone marrow results had not improved,asked % wise damage,did not have that info but file was on desk!!!.Told all the way through everything going in right direction,then told it has only been going in right direction last 2 months!!!
Consultant then was telling me how Slim was very lucky he did not die felt like saying( hello i was there,)you do not choose a wedding in ITU by choice!
Any way had my moan, Eve

[BADGERParticipant]

Hello Eve

I was dissapointed to hear about Slims result do you think they have given you the correct information as it seemed he was doing so well it really cheers you up doesn't it! when some consultants say such callous things what Slim needs is positive things not negative I think you have drawn the short straw in what they call the post code lottery:-/
Regards to Slim. Are you feeling ok you must be exhausted with all the worry and upset:-P

Love Jo 😉

[MinParticipant]

I can see your disappointed Eve,
but don't despair remember this is a marathon not a sprint!
There will be many ups and downs on this journey. ( I am struggling to spell as just had a pre dinner glass of wine mmmmm)
Take into account his spell in hospital when he was ill and imagine the priority now is getting him fit,well and some weight back on, after which let the medication do its thing. It works best on well people. Sick people take longer to respond.
We have spent two years now watching numbers go up and down in his bloods. Responding with despair.
WE have reached a decision that from here on if possible we will not ask. We will respond to how well Peter feels.
there have been so many times when he has felt well and the numbers say oOMG but it think there is a degree in Peters case of the beast living in synergy with him.
From here on if he is feeling well, and able that will do for us. If he is not well and heading downwards we will worry. I may re assess this tomorrow after clinic and without the benefit of a glass of wine
Does that make sense?
Love MIN

[brochoParticipant]

Hi Min and Eve I just wanted to say I have never been too worried about knowing the exact paraprotein numbers on my tests, in the first few years before I became a non-secretor, I was just happy to be told they were low or static, I would have found it too stressful to keep wondering how low they were! As you say Min if you concentrate on being as well as you can the numbers will respond accordingly. Eve when you next see that doctor imagine you have a custard pie to splosh on his head, some doctors just dont like telling us exact numbers!! Heres to better health for us all . Min I hope you arent suffering this morning after your wine !! love Bridget x

[MinParticipant]

Oh deary me, two glasses of wine and I have the hangover from hel l Bridget.
I dont think I have been so stressed in a very long time. Woke at 4 and never got back to sleep. Hospital this morning and consultant told Peter his numbers !*!*!!!* wish he had not as I went into anxiety mode; not good, sent him off to see the transplant co-ordinator who had penciled in the 15th and work ups tomorrow for it.
Afternoon saw the surgeon at another hospital who had him penciled in for the 18th for his kyphoplasty which has been delayed so many times due to either relapses or blood clots over the past 8 months.
My blood pressure must have been thru the ceiling as I know Peter wants to be out of pain as a priority, and the MM Dr doesn't want to delay the transplant.
Almost begged the surgeon to do it earlier. Agreed. He rang the MM man. We rang the co-ordinator and after consulting the Professor he will have surgery on 12th followed by transplant.
OMG I feel myself getting on the stress ladder again for all my good intentions. Now its drawing closer there is no going back.
Min

[brochoParticipant]

Dear Min well you deserved a couple of glasses of vino after the day you had!! Thank goodness the surgeon agreed to do the kyphoplasty earier ! I wish theses doctors would consider how they would feel in that situation pain makes the healing process much more difficult but apart from that Peter has had to put up with a high level of pain for such long pain!! Min I do hope that now there is a plan of action your stress levels come down, you were geared up for a fight and you won !! Take care Min and I am sure the occasional hangover is worth it !! love Bridget x

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