Thank you everyone for your good wishes,
Slims shattered gone to bed and I am going to follow him,left home at 9am got back just before 8pm.It leaves us a bit dumb foundered, spent a long time for test that could have been done in Canterbury,Ex ray and Heart Monitor.The rest could have been explained in a booklet.!!
Next appointment next Monday ,told no chance of going away out of the country,before SCT.So off to bed shattered,what a journey.Good Night Eve
Hi Everybody
Well things are moving fast now,all dates have been moved forward.
Slim was lucky,he asked could he have anything done locally instead of travelling 85 miles to London,so they allowed him to have BMB in Canterbury.
Hoping he might be allowed to have the Cyclophosphamide 5 hr drip also in Canterbury.( fingers crossed ):-P
Off to Kings on Monday for all pre test,decided we would try the new Train,suppose to take 50 min on the Javelin instead of 2 hours.
He is feeling a bit more settled,spoke to a new member of the trials team,who took the trouble to explain a few of his worries.Eve
Hi Paul
IT took me a long time to get Slim to claim benefits,his thinking, was he was retired.he would not get anything.
All though it was costing us a lot of money on petrol, parking,and general things that I would not normally buy,all his clothes were to big for him,plus lots of extra washing,not to mention the carpet that was ruined.
I would urge any body retired or not to claim the money,that is there entitlement,I found out the other day I could get a separate allowance,Slim gets attendance allowance,but he can nominate someone for carers allowance.
He has worked all his life and served his country for 22 years,never had one penny off the state,now at the age of 67,he might not have many years to collect his pension which he has paid into for 50 years.
So yes you should get what you are entitled too.Eve
Hi Mavis
Lets hope this is just a blip and your BMB and your test comes back negative,Giving your condition you will not go on the intensive pathway,so should have a break in treatment.Slims has injected himself for over 6 months,because of blood clots,so you will soon learn
He did not loose his hair,but it got very thin,and blocked plug wholes up all the time,So I cut it very short to make it more manageable.
Everyone says the BMB is not nice,Slims due for another one today,he does not seem to mind it,he says it depends on doctor doing it,
Water is so important to keep your kidneys clear,your taste will change daily so drinking is important.
Any way good luck with your test,at least you are well prepared and the news does not come as a shock Eve
Hi Shirley
Just replied to a post on treatment you might be able to answer a few questions???? sorry to put this on you .Eve
Hi Penny
First may I say I cannot help you,but I have replied to boost you up to the top again ,otherwise some post get lost
I think I am correct in saying Shirley has had one from a sibling and there are a few people in the process,I know Shirley does not post much,so look out for a girl in a cowboy hat LOL.I think she is based in Southampton.
Other people may come on and be able to help you,Good Luck Eve
Hi Chris
Congratulations on your forth coming wedding,you can say one thing about this B—-y Myeloma,it does put every thing into perspective.
Slim and I lived together for 30 years decided to get married before mm came along just never got round to it,finally set a date,but never made it as he ended up in ITU,so are marrage took place in ITU,just sorry we did not do it before.Just remember to change your wills they become invalid when you marry.
I think it is so wrong to put cancer patients on a general ward,as you say,there is more chance of you picking up other infections,from ITU Slim was put on a general ward for 10 days,the only way I can describe it was hell,I was so glad to get him home, at least you had a telly to watch.
I agree completely with your thoughts,on benefits,so many people do not claim what they are entitled too,and they do make a difference,took me a long time to get Slim to claim,he gets attendance allowance,found out the other day I could get carers allowance,they just make everything so dam hard.
One thing Myeloma does,is make you,make the most of each day,Eve.
Hi Tina
Fluid is a must,I have the same problem getting water down Slim,I bought 2 plastic jugs with lids,and fill them up with week juice,and put in fridge,Slim found it easier to have a small glass,so kept it filled up constantly,he went through a stage of fizzy drinks,my attitude was anything that goes down,you will find your taste alter all the time,if you want to be more regimental about it,1/2 pint every hour,but when you go out,make sure you take bottles with you,I use to freeze them so during hot weather you always have cold drinks.
Good luck with the trials Eve
Hi Sue
So many years of fighting for drugs,again like Bridget it seems so unfair,I am amazed at these criteria they have,MM patients lay them selves out to become guinea pigs ,and they get choosy who they take,are MM patients part of the grand scheme or just a by product to be disposed off if you do not meet the criteria.
Sorry I sound so angry Sue,I am just so aware that one day I am going to be standing where you are now,
where do you go from here!!!! is there any other drug that will help.Eve
Hi Bridget
Just reading you news,and wondering what to say,sorry does not seem fitting, it is strange the way,over time with this MM it becomes another hurdle to get over,and now you are being told there are no more hurdles,well Bridget if you are prepared to jump the hurdles,they should at least be prepared to find some.
I like most people on this site,have nothing but admiration for the way you have battled with MM,always positive and all ways ready to help others.I cannot see why you cannot have the new treatments without going on the trials,if you come to a position were,there is nothing left,then you have nothing to loose,and as you are prepared to carry on,they should at least give you the chance,and I hope they do.
My thoughts and best wishers will be with you in the days ahead.love Eve
Hi James
Good to see you have got through SCT and now,working on you general health,Slim my husband has not yet had SCT but after a few hiccups with treatment,found himself unable to walk with out sticks then only a short distance.
He started walking short distances often with me pushing a wheelchair just in case, went to one stick,then none,took a long time,but managers to walk the dog now,as long as he does not have to stand still for to long.
I think you have to accept the limitations of Myeloma,and ask yourself are you ever going to be the same again??
Progress is far to slow for Slim,wants to run before he can walk!!,but if he had not had that attitude,!!!
I would say keep yourself busy,just doing normal things around the house,it amazing how much exercise you can get,just by
doing housework,and do not try in any form heavy lifting,the worse thing that could go wrong is having more bone damage.
So give your wife a rest and help with the house work,then lots of short walks in the lovely sun shine of Spain. love Eve
Hi Dai
When I read you had missed out on trials,I put off replying as it just did not seem enough to say how sorry I felt for you,it just seemed so unfair,but hey! some times life is not fair,and by the sound of it you have picked yourself up and hey ho! on to the next treatment.
You cannot keep a good man down:-)
At least with the night sweats you can sympathise with us women.LOL
One of my better buys for Slim has been an electric blanket that has dual controls,so I do not have to be to hot,and he can go hot and cold,choice between blanket or fan.seems to work.
look after yourself.Love Eve
Hi Andy
Again welcome to the site
My name is Eve and I am a carer to my husband,I use to be a 3am person,but things have got a lot better,and my husband took my advice about seeing the doctor and taking an extra pill,to try and get some normality in are life.
He now takes a light ant depression tablet which makes his body relax so sleeps all night,wish he had done it earlier,because if he is up I am up!!:-P
My husband like you was admitted with AKF and Hypocalcuimia on first visit to consultant,10am app wheeled in,on ward on drip within 30 min on a Friday morning had so much Dex that weekend he was high as a kite,all test done,and walked out of hospital on Monday afternoon,13 months later with a few hiccups waiting on SCT,so it can be done,have a good journey.Eve
Hi Bridget and Helen
Bridget I do not know if they do accomodation,but I will ask,I have been told its the main trauma hospital in London,deals with anything bad that,s going down,The easiest solution would be go in one day have test then come out after 2 days of test,I am lucky I have a daughter who lives in Sevenoaks,but last time she insisted on giving up her bed and took us to London,Matty has CP,and she has 2 other children,so its not ideal.85 miles to London from Deal other wise.
Helen I do envy you off to NZ the land of the white clouds,it is a beautiful country,the best way to see it is hire a camper van, you can stay in DOC SITES,I saw more of NZ in 3 months than my brother who,s been travelling there for 20 years.I miss my grand children out there, on Skype my grandson wanted to know why I lived in another country.
Helen if you want any info my EMAIL is on my profile. Love Eve
Hi Mavis and Tom
thank you for your good wishers.Tom I posted on your face book,don,t you want to be my friend:-( 🙁 🙁
Hi Bridget
Although I originally come from Liverpool,I am a country bumpkin at heart,so London was a bit daunting,Just cannot see Slim coping well with train,all though easier option,last time we went my daughter took us,road works diversions took us all over the place,even my daughter got a bit lost and she spends a lot of time in London hospitals with my grandson.
Have done a lot of reading on SCT,but waiting to see if they are prepared to do it!!!its a hard decision quality over quantity.
The consultant did say the best time to have it,is when you are ill,rather than like Slim,who was very ill and has some quality of life now.
I know the thought of spending up to a month there,is not helping,ideally it would be good if they would take stem cells and wait for any change in remission then have SCT but it,s not done at Kings although they have said they can keep stem cells for up 7 years!!!
So it,s a wait and see game,but looking forward to spring missed it all last year,need to smell the blue bells.Eve
