This topic contains 48 replies, has 16 voices, and was last updated by 
mhnevill 12 years, 6 months ago.
Hi Craig
Well done you 😀 Love the Kick A S S thing he he, pleased everything is starting to run smoother.
Tom "Onwards and Upwards"
Blimey it's been a while since I had time to get on!
Just to keep you all updated, Etta has had a rotten time of it over the past couple of weeks. Her legs got extremely weak to the point she couldn't get out of bed. We finally got a physio referral and they came out to give her exercises to help strengthen them.
Unfortunately, 3 days later she passed out. When I finally got her to come around she complained she couldn't see anything and was running a temp. Long story short, her blood pressure had dropped too low and she was whisked off in an ambulance.
In hindsight maybe it was for the best as they found out her white blood cell count had dropped very low, so she's been on anti-biotics and something else to improve her cell count. Treatment has stopped.
As of yesterday, all her levels were back to "normal", her para protein count was about 90 the last time it was checked. Hopefully she will be coming home soon, but it all depends on her mobility as her legs are still very weak.
On another point, how are your doctors dealing with signs of depression? Ours don't seem concerned at all even when I point out how depressed she is. She keeps talking about giving up, and what's the point of carrying on etc etc which is definitely NOT like Etta.
Sometimes I feel like I'm banging my head against a wall trying to get them to see! Also her vision still hasn't come back to what it should be which concerns me (but again not them). Could this be with the sudden stop in treatment? I'm sure I read somewhere that suddenly stopping her steroids can affect the eyesight as a side effect.
Anyway, any advice would be helpful before I go and badger the docs again!
Craig
Hi Craig
This is were you have to be strong,when Slim was in ITU,he was saying and seeing all sought of things,does not remember anything,In fact a lot of his short term memory has gone,but that,s not important,he is still here,and although not his old self,I am grateful.
Low blood pressure is my first marker with Slim,even before other symptoms show,I keep reader at home and check at least once a week and more when he is a little bit off.
it is hard to keep positive when you are feeling rotten,I suppose the nursing staff have heard it all before,start planning little treats even if its just going to a favourite place.I took Slim and wheelchair out all the time,don,t get me wrong but some times you have to be firm,when they cannot see any way forward,I think Slim called it me bulling him.
Ettie has a long way to go,she will get there.love Eve
Hi Craig poor Etta really is having a rought time no wonder she feels depressed The depression could be caused in part by all the medication combined with all the info she is trying to take on board VHave you spoken to her specialist nurse? They are there for you as well as Etta but could I suggest you have a chat with them about her depression, they are so much more approahable than doctors and are very good at getting things done . I hope things start to get better very soon for both of you Bridget
Hi Craig and Etta
Sorry to hear you aint feeling good Etta, as for the depression I am sure I never had any? ? but I did have a stint at talking to a councelor and found it a great help and if that was me being depressed and getting better then so be it it worked for me I think most big hospitals have them it might be worth an Ask 😀
I think the Dr's treat us all the same? even though we know we all react to it in differant ways.
Keep strong you two its an uphill struggle but well worth it 🙂
Love and Hugs ((()))
Tom "Onwards and Upwards" xxx
Thanks Bridget and Tom,
It's been one of those years were we seem to have lost a few family members, the kids emigrating and then this and I think it all got too much for her.
She's had a "chat" with someone and they're giving her something to ease her anxiety.
We saw her Doc today who's giving her a break from everything until the new year then he will review how she is before proceeding.
Hopefully we can get her stronger and back to her old self over the holiday period.
Love and best wishes to everyone over the Christmas period and I hope you all keep well.
Craig & Etta
PS forgot to say they sent her home today, complete with adjustable bed and everything!
Welcome Home Etta am sure you will get stronger at home where you know where everything is, enjoy the bed.
Love and Hugs to you both ((()))
Tom "Onwards and Upwards" xx
Hi Craig and Etta
Glad to see you have got home,as Tom said enjoy that bed,wish Slim had one,he sleeps in his chair more than his bed,says his legs feel far more comfortable in chair.:-)
Just being home is going to lift Etta,nothing worst than hospitals to make you feel depressed,looking back Slim had a phase of anxiety,it will pass:-)
If you have been so well,then this happens it does knock the stuffing out of you,it,s not a 2 week illness ,chronic is the word I use,but things do get easier,it,s just very hard to be positive when you are feeling so ill.
Put Christmas top of the list,and enjoy it as much as you can,love Eve
Seems like ages since I've been on here but had lots to do to keep me busy!
Etta is doing fine at the moment, slowly getting her strength and sense of humour back. She's eating a lot better now and her muscles are returning (damn those steroids!).
They arranged for a wheelchair for her as at the moment she's walking with a frame, but still a bit wobbly. On the plus side she's got to about 12 feet now which means she likes to wander over to the couch and sit and watch a bit of TV (if only there's was something good to watch she keeps saying, told you she was getting her sense of humour back!).
Anyway, the wheelchair has been great, both for appointments and getting her out of the house. I was getting a bit worried at first as she kept having panic attacks when we went out, so we've took it slow and are building up both in time and shop size. Got her some lovely scarves as I'm afraid she's lost most of her hair at the back and quite thin on top. That was a bit distressing when she finally plucked up the courage to look, but as I've told her, it will grow back!
Well, the Doc was all ready for putting her back on hthe meds last week until we told him what her weight was now. He had a quick rethink when we told him she had lost almost 4 stone, so it's another month off for good behaviour, just some calcichew tablets. Se had a bone marrow test the other week so we got the results of that back at the same time. He said it was down from a 60+ count to around 15 now, and he's aiming for a 10. Her blood protein levels are stabilising under 100 despite being off the meds for almost 2 months so were looking on that as a positive too.
She told him in no uncertain terms though that she is definitely NOT going back on full strength meds, so we left him looking rather bemused and suitably chastised.
Her appetite is back again, small and often seems to be the key. It's a case of whatever she fancies and when she fancies it (makes planning meals a bit tricky but as long as she's eating I'm not bothered).
Well, she's stirring at the moment so better go see how she is. I will have a look through the recent posts and try and catch up with people, just been a bit hectic lately with trying to balance work and home.
Keep your chins up!
Craig & Etta
Hi Craig and Etta
Sounds if you have been through the mill a bit,I can only tell you Slim was in this position,in may last year,in a wheelchair,at this present moment he is out walking the dog.!!!!!
As you say with food a little and often,as much as you can Slim has now put on 1st 8ib,after loosing 4 st.so getting there.I found buying small ready made puddings and custards a help,also lots of things to nibble on.not the ideal food but as long as he was eating.:-)
I know it is harder in winter,but getting out made a big difference,I also got sky for Slim so he could record nature programs,and sport to watch in the middle of the night when not sleeping,as his ability to do crosswords and read became non existant
I hope you are claiming all money,s due,as it does make a difference to your quality of life,Just remember Craig it will also wear you down,it is hard work as a carer I know how much it effects me.Eve
PS> One thing I forget to mention,Slim was put straight back on Chemo after leaving hospital,we both felt it was to soon,but took our consultants advice,on a reduced dose of steroids,It was much better than we thought,the reason he was so ill,was because of pneumonia and blood clots,and the steroids masked the illness.After 6 cycles of CTD,he went on Velcade again 6 Cycles and this took him into remission. Eve
At the moment Eve not getting a blooming penny!
The DSS came out in November for a home visit and basically said she has to be ill for 12 weeks before we can claim for anything. Then we have to prove that she is going to be in the same (or worse) condition for at least 6 months from then!
Basically he said don't hold out any hope of any money at all!
Going to give them another ring tomorrow to chase them up. At the moment it's costing me a small fortune with the heating needing to be twice s much as normal as she really feels the cold (even though I feel like I'm melting).
Craig
Hi Craig your post really shocked me !! How the heck can they treat you like that it beggars belief . I strongly recommend getting a Macmillan benefit advisor on board , you need someone who knows the system If there is not Mac advisor try the hospital who usually have a benefits advice dept Dont give up you are entitled to help during the most difficult time of your lives. As you say heating is really important mine is on constantlyand it really stresses me as I am on a pre-payment meter. Let us know how you get on , we are all rooting for you love to you and Etta Bridget
Hi Craig
Well I am shocked,sorry you have to get people on board and start ruffling a few feathers,if you cannot get help from macmillan nurses go to local papers specially now as the lords have just thrown out a bill concerning disabled people.
No one gets Myeloma over night,you have to get your doctor on board,to put it bluntly this is out rages,I know it is extra work but fight them all the way, Myeloma does not go away,I do not know were you live,but you need help big time.
my heating bill has more than doubled ,so I know what what you mean.Eve
Hi Craig and Etta
I have not been on for a while and am just catching up with posts. I second everything that others have said regarding benefit and would add that Etta will also be entitled to a blue badge for parking. thus saving some money
good luck Gill
Hi Craig and Etta
Good Luck in your task to get what you are legaly entitiled to have, although you should get it they make it hard for you to get it without a bloody fight.
I am not on Beifits as I still work full time but I have the Blue Badge and thats worth its weight in gold (except in Scunthorpe General Hospital who has done their best to make you pay>:-(
All the Best
Tom "Onwards and Upwards" xx
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