[eveParticipant]

Hi
Just opened an e mail from the Forum,It seems I have put something in a message which they consider offensive. Sorry if I have upset anyone.
I can only put it down to being so tired,it was around 10 pm one night.
I can only say I admire you all,how you cope with mm, eve

sorry in wrong topic should be in off topic,brain not working today,I think it has gone to see the bluebells,instead of going to the hospital!!!!!!!!
best wishers eve

[brochoParticipant]

Morning Eve away with the blubells sounds good to me !!Cant think of anywhere nicer in fact As for the offense dont worry we have all done it I am sure and it was probably a minor thing How was Slim last night? Are you able to get any rest? Try and take a little time to recharge your batteries away from the hospital its exhausting visiting anyone let alone your loved one , my daughter has cystic fibrosis and after years of visiting I know feel exhausted after walking in the door!!Hope you and Slim both have a good day love Bridget x

[BADGERParticipant]

Hi Eve
dont be sorry you have been through a real worring time I expect you had a lot on your mind and you were exhausted hope slim is feeling a bit better
Love from jO XX

[jmsmythParticipant]

Hi Eve

I'm with Bridget and Jo. How is Slim? Do take care of yourself.
Love Jean xx

[MinParticipant]

Hi Eve,
Cant imagine who you have offended, but don't worry I it was not me!
I hope things are improving for slim and you too of course. How is he and how are you coping. Its a long day at hospitals and very tiring for both patient and loved ones. I think you must be done in by now and praying slim gets home soon so you can have a 'rest' Keep in touch
love Min

[tomParticipant]

Hey Eve

Trust me girl us lot are not easy to offend:-D and it must be the Skool prefect that felt it might be dodgey 😎 I know I have tried to use MANY a cuss word and it wont let me He he (but av found a way round it ha ha.)

Hope you and Slim are doing OK

Lots of Love from one "Unaffected bout comments" Tom xxx

ps let me know if you want to cuss and al tell you how to and not get cut orf he he xx

[eveParticipant]

Hi to you all

Tom you are going to have to tell me how i can do it,because I know I am loosing the plot.
just got back from hospital.Slim had cat scan today,not good news.
Blood clots on lungs,also cavities might be mm or could be tb.my own thoughts are possible asbestos as Slim use to sleep under the piping on board ship as a young marine,Doing test tomorrow for tb.
Just want to get him home,I think he will be more settled and happy at home,mm gone on back burner,lungs now big problem,I do not think they can believehow well he looks with the problem he has,but I know Slim he is putting on a good show,fighting the:'-(all the way.
Going to bed night night and god bless

[MinParticipant]

Dear Eve
Your slim problems sound so familiar I could be reading Peters record. He always looks well too when he is 'more ill'
I know your worried about blood clots on lungs but Peter got them when on velcade he had so many of them they could not count them. He was puffing like an old man running a marathon. So breathless that I was more terrified than when he had a heart bypass 8yrs ago. But today he is fine (ish) given the fact he has MM.
They did a D Diamer test which showed how bad the clots were then lots of other tests. He gives himself a heparin injection daily to ensure the clots don't re-appear or shorten his life.
Velcade caused peters Pulminary embolisms. or as they call it today Thrombosis. He had had a few chest infections and lots of water retention including in the linings of his lungs when he was 1st diagnosed as well as kidney failure. The consultant said he was surprised he did not get it when on Thalidomide as that is a high clot risk factor. Peter was on a daily dose of aspirin to prevent such things but still got it.
I blamed all the 'gas' training he used to do with recruits in the RAF for this but in truth it was a side effect of mm medication!
Thrombosis when on the MM medications is a risk (slight) but its manageable with tablets or injections. Warfarin is another thing they take when the clots have gone.
Jeepers I remember when they were discovered and thought he was going to slip off the plate and die there and then, in truth so did Peter, with the shock of having yet another serious illness;but its very manageable,with medication, just as the mm is manageable.
All of these setbacks are a steep learning curve for Slim to listen to his body, and he will recover from the clots.
Having spent days in the Hospital from Hel* he will learn to take care of himself and ensure he does not have to go back in!!!!!!
When Peter was admitted at short notice and unexpectedly he made it a goal to ensure he never had to go back even though he had excellent care he just hated it being away from home.
He is a regimented type of person and everything has to be done in an orderly kind of way and hospital does not allow for this…hence the reason I think he makes sure not to have to go back in.
As with all people with this disease when you have been passed as A1 fit in the forces being felled by a cancer of this type is incomprehensible, as an ex marine slim will find it difficult to believe that having been fit all his life he could ever contract such a thing. Or at least that was what my husband said of himself. This is a man who only ever had 5 days sick in 27years and that was caused by kidney stones.
When the Dr told him he had cancerous lessions he told her she was very wrong and he would know if he had cancer… How wrong he was.
Hopefully the worry about TB is only that, and I pray that he does not have another health problem. Get him home and give him some TLC ASAP.
Then you can cuss as much as you like!
Love Min

[eveParticipant]

Hi min
just woke up, thank thank you so much,I need to know there is hope to give him hope,At the moment reading your message you could be talking about Slim I know I have left him tonight wondering if this is the end.The doctors do not know it,his attertude is I have got away with it for 66 years!!!!I suppose,because of his life style he has always said that he never expected to have a long life so from the age of 26 every year extra he lived to the full,[does not suffer fools lightly ]
Thanks again,do not know why I looked at e mails again,but I will sleep ,and go back to that hospital,with the believe that this is not the end,he is a fighter,and he deserves my support.thanks again eve

[DebsParticipant]

Hi eve

Just wanted to say firstly to keep strong with slim and remember all the experts you have working with him. He sounds like a fighter too so hopefully you'll look back on this in a month and wonder what the worry was about …I hope so as you're v inspirational people!
As to the complaint , I'm with Tom…..would take awful lot for me to be offended on this site. Swearing certainly wouldn't do it! I've even read posts in the past ( not yours I hasten to add) where I've found them thoughtless to what others are going through but that's part of finding your feet on a forum and I can't imagine reporting it. So don't let that upset you…we're all with you on your journey!
Debs x

[tomParticipant]

Hi Eve

Its a bit of a B-A-S-T-A-R-D this MM (see now av shown you he he)

Am sure Slim will be Ok its just getting his meds right that causes a big problem :-/

And as for Slim Looking in good shape, I think its an MM thing cos I know that all us suffering MM look bloody good to say what we are and have gone through 😀

Good Luck and if you want to cuss go ahead and try it my way 😀 am sure no one will be offended 😎

Love

One unaffendable Tom xxx

[BADGERParticipant]

Hi Eve and Tom

Ditto not offended in anyway and tom you are looking gorgeous must be all the attention from the young bride :-S

Eve I do hope slim is feeling a bit better and now getting all the attention he needs

Min your posts are wonderful so full of help and information

Love Jo xx

[tomParticipant]

Oh Jo here is Tom walking away Blushing he he 😎

[MinParticipant]

Hi Eve
How is Slim today? any good news to tell us. Forgot to tell you my man had lost 4and a half stone and shrunk by 4 inches since the beginning of this god dam n awful journey.
I lost a stone in weight and lost my mind with worry. I have put it back on but the minds lost in the wilderness if I could only remember why I climb the stairs without having to go down again to remember I would be fine.
I am exhausted from having to constantly having to go back to square one to remember what to do next.
In keeping with Toms advise I use the term Bar-steward to describe this blasted illness we know what I mean.
Keep your chin up and thinking of you
Love MIn

[eveParticipant]

Hi MIn
Not good min,
I now know why they call those little girls who try to get you walking o/t,they go over the top,left Slim for 4hrs he was due to eat,have cat scan and have a rest period, this ot decided Slim was going to walk,ith zimmer with sticks and do stairs and Slim put on a great act and did the lot only to be exhausted for rest of day.
The results of cat scan are not good they do not understand how he can do so much plus maintain level of oxygen in body,and look good.I keep telling them he use to be a diver and is very good at controlling oxygen output.
Scan shows widespread pulmonary embolism,also lots of cavities on lungs,fungal or bacterial infection possible,plus extensive myelomatous infiltation thoracic vertebrae and ribs multiple compression fractures.The next day up popped the o/t wanting him to walk him again,told the stupid girl to go into file and look at cat scan report.[bar steward]
never came near me could not even look me in the eye.Is it too much to ask people to do there job properly.

I want him home,coming to terms with things.Every time I leave him something happens,eg given wrong meds,not given meds on time,stupid o/t,He is not fit to walk on his own and he thinks he can,just waiting for the fall.Mind not all there,cannot remember things,trying to keep him focused by doing crosswords with him,and watching wildlife on computer,no tvs or radio on ward,no water cooler bring in ice every moring, no freezer only small fridge,for 32 patients ,opened ward again,packing people in.

The only thing you can say about the improvements,is it does not stink of urine any more,twice I have had to find cleaner, to remove blood from bathroom floor before use,emergency bells still not fixed from reporting 8 days ago.to tell you the truth they do not give a sugar.
Off to hospital again now,just rang Slim had to move,at midnight noise with new patient.
keep in touch eve

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