eve replied to the topic Returning to the Uk for support. in the forum General 10 years, 8 months ago
Hi Molly
I would be very careful and get some expert advice on any form filling you have to do,CAB should be able to talk you through this.
As you have been out of the country for 6 years,I think you will have to prove you are not a health tourist,but saying that I take it your husband has put many years of tax and Stamps,which should entitle…[Read more]
eve replied to the topic The guesswork that is myeloma treatment at present in the forum General 10 years, 8 months ago
Hi Helen
I was going to keep well away from this thread as I do not think it achieves anything!!! And any one reading it who is new to Myeloma,will wonder what it’s all about.
I do not like the fact that Dusk is not up front,even if her opinion is valid,sorry Dusk,but that’s just my opinion
Helen I have come on here mainly to say,I am so sorry…[Read more]
eve replied to the topic Second Opinion in the forum General 10 years, 8 months ago
Hi jeff
There should be no problems asking your consultant for a second opinion, Slims consultant did not hesitate ,I think it is normal procedure when your own hospital feel they can do no more, we had no problems,and were seen by new consultant within 3 weeks. Be prepared to travel as it involves going out of your area.
We still go to see the…[Read more]
eve replied to the topic Whoops! 2 in the forum Treatment 10 years, 8 months ago
Hi Andy
I had a good sleep last night,Slim was a usual,up most of the night,but occasionally my body fails me,I make up for all the sleep I loose. It is the Chemo brain that causes,the inability to retain information,he can not do complicated crosswords any more.
Has anyone said how the Pomilidomyde is working?????and how do you feel about it in…[Read more]
eve replied to the topic Whoops! 2 in the forum Treatment 10 years, 8 months ago
Sorry Andy
Taking over post again!!!!women pirates.
You can have a Dex fuelled rant lol.Love Eve
eve replied to the topic Whoops! 2 in the forum Treatment 10 years, 8 months ago
Hi Dick
That’s a good one,cannot even blame the booze as it’s morning,!!!!
I use an I pad all the time now,and know it looks like a slip of the finger because F and D are next to each other,but I honestly believe it’s predictive rather then slip of the finger,I am so lazy I do not read it again unless it,s red lined for unknown word.
I bet…[Read more]
eve replied to the topic Whoops! 2 in the forum Treatment 10 years, 8 months ago
Hi Andy
Did you notice it’s all women that turned out as pirates,I think it was Maureen and the sex bit???? Or some are not posting there own thread but when they come on to comment on some one else’s post,it’s so nice to here from them.
As Slims not much into a TV ,and his memory is not great on Chemo,so reading is out,except for papers,we have…[Read more]
eve replied to the topic ROLLER COASTER RIDE in the forum Carers 10 years, 8 months ago
Hi Liz
Some people have been on Revilimid for years and doing well,so let’s hope Kevin gets a good length of time,I think most of these drugs leave patients prone to infections as they batter all the cells not just the Cancer cells.
Well Slim has started second cycle,from now on it will be every week,he is holding on well,tired and all the usual…[Read more]
eve replied to the topic Getting Blood Test Results in the forum General 10 years, 8 months ago
Hi
Well I can only think it must vary around the country.
Never had any problems getting any results bloods or diagnostic test,if fact on the odd occasion like this morning doctors have asked me can they photostat results they have not had!!!!.
I do carry a large red file,up to date and in order,so if Slim has an emergency admission,or like…[Read more]
eve replied to the topic Whoops! 2 in the forum Treatment 10 years, 8 months ago
Hi Andy
38.1 a bit of back pain and they took you in!! Now that is service,not taking any chances with you,!gSF injections as well.all good Andy,then a couple of pints at the local,real ale plenty of iron in it!!!,and to top it up the lovely Dex,all good.
You have now passed muster for the next round!. I call that a good service Andy. No one…[Read more]
eve replied to the topic muscle spasms? in the forum General 10 years, 8 months ago
Hi Frances
I take it the doctor Came to that conclusion after MRI,plus full body x ray!!
My husband has had a resent pain in shoulder unable to lift his arm in and out of clothes,did have fully body x ray,no change,told not every pain is MM,since then he has had a MRI Scan that can track new Myeloma,As you can guess the pain was new Myeloma…[Read more]
eve replied to the topic Taken off treatment in the forum General 10 years, 9 months ago
Ji Jeff
This site is about helping one another,and I know sometimes I come a cross very blunt and straight to the point,but no offence is intended,I can just tell you we have been there so know exactly how you feel,and not to give up!!!!
Lots of people on here have and still do help me,I suppose in many ways I have learnt to ride the roller…[Read more]
eve replied to the topic ROLLER COASTER RIDE in the forum Carers 10 years, 9 months ago
Hi Jean
She is coming the start of NZ Easter break with Kiwi kids,husband arriving on business a couple of weeks late,and yes something to look forward to,the whole family back together again for a short time.
So all good at the moment!!
Sorry to hear about the dreaded shingles!! So so painful even when spots are gone,Slim has been on the anti…[Read more]
eve replied to the topic ROLLER COASTER RIDE in the forum Carers 10 years, 9 months ago
Hi Everyone
Thought as I am on would keep you up to date,
Slim has had his first month of treatment,after being told there was nothing they could do!!
Well we have had a good month,the weather in are little corner of the world has helped,most days out and about,lovely to see the daffodils in bloom,the sunshine helps even thou the south wind is…[Read more]
eve replied to the topic Taken off treatment in the forum General 10 years, 9 months ago
Hi Jeff
I do not know much about your present state to comment on it,feeling if you have been abandoned ,I can understand,your PP are going up,but your tiredness is I would say because of your bloods!!!,even if they have given up on you,you are entitled to have a quality of life plus may be second opinion. I can only tell you my husbands…[Read more]
eve replied to the topic Getting Blood Test Results in the forum General 10 years, 9 months ago
It sounds a bit like a situation that has developed which is not in the best interest of patient or hospital !!!
Instead of possible making the situation a big issue,why not go to the patient service that is in the hospital PALS????
My understanding is you want the blood results that you are entitled to for your own peace of mind ????
eve replied to the topic Feeling pretty alone right now… in the forum Newcomers 10 years, 9 months ago
Hi Everyone
I do not usually look at newcomers postings,mainly because after 3 years being a carer of someone with Myeloma,things have advanced so much concerning treatment,but just reading this post made my realise that the emotional side never changes,but I do think after going through the emotions of shock grief,plus usual problems,things do…[Read more]
eve replied to the topic Clexane versus RIVAROXABAN in the forum General 10 years, 9 months ago
Hi Terry and David
Thank you both for the information,it’s worth making a note of!!,because of the fact of it only lasting 24 hrs in the body,so it,s important that it is taken everyday at the same time,you assume there is no build up of the drug in the body.
Why should it be ok with Velcade but not Revilimid ?????
I also think people assume if…[Read more]
eve replied to the topic Clexane versus RIVAROXABAN in the forum General 10 years, 9 months ago
Hi Terry
Well you have answered my question!!!!
Slim was on CDR,when he was prescribed RIVAROXABAN ,he only had it for 2 months,and 2 cycles each time not being able to complete the cycle because,of sepsis and very low blood readings,platelets and neuts hit rock bottom.( looking back an awful time ).
He had to stop chemo completely,and after 2…[Read more]
eve replied to the topic continuous use of Dex in the forum General 10 years, 9 months ago
You can vary the Dex ,take half dose or even taper off it slowly. There are other things you can take in the steroid department if it just Dex that does not agree with you,and I am surprised this has not been suggested by consultant !!!
As for alcohol !!!! Well need I say more,odd wine or beer yes,spirits,never.Eve