Hi Craig
How did you manage to get sod through the senses ,you cannot say h-e-l-l with out getting your hand slapped on here:-P lol
good for you ,about getting help,don,t forget some people never ever draw there pension on here,work for a life time,and never get to collect.So take everything you can,I got messed up by pension people who lost forms in process and only got back dated 6 weeks I did not appeal,as only had 14 days to appeal,and Slim was having a rough time so lost out on some money.Blue Badge for car helps on parking and cost specially at hospitals,
My carpets have been decorated with vomit and number two,s and it was white,so now laying laminated,changed bath to walk in shower,I just could not have managed otherwise,Slim has wheelchair,as was unable to walk any distance for some time,although much better now.So be prepared,
Slim will now let me buy him some clothes as he looked like the shrinking man,lost 3and1/2 stone and 5 inches in height,clothes were falling off him,but with extra money he does not mind me spending some on clothes.
Some of the ladies on here went the other way and put weight on with steroids,so it all adds up money wise.
need any help let us know Eve
Hi Min
So glad you are looking forward to the holiday,There is lots to do there,the only thing I found was just keeping myself covered up,except in pool or in hotel,need light clothes,taxi,s can be a bit of a rip off,negotiate before you get in.Good place to buy gold.Have a wonderful time.
Do not forget to tell us all about it when you get back.:-) eve
Hi Mari
How are things going for Steve and yourself ,its all a bit of wait and see,not a nice position to be in,but it just might be a blip
Hope Steve is keeping fit on the bike,long rides might take his mind off things.As Deb say,s retail therapy is a good thing shops are full of lovely things,might be worth your while to take your mind off things short term.Eve
Good Morning Every One
Susannah thank you for information and yes i will be interested on your husbands progress,it,s a good thing for us to know about new trials,and it has to be helpful to you to be able to talk about it openly so I am looking forward to see how things are going,about the Dex on MYeloma X1 trial the dose was reduced on Slim to 10 ml reason being it masked his infection,ended up with septic pneumonia,So watch out for low blood pressure.They may allow a reduction on Dex.:-S
Bridget so glad they have found a new treatment for you,your hospital is a bit of a trail blazer no one should have to wait for treatment when its available so glad you have good doctors,Slim,s being doing injections for many months,I offered to do them,told me he was not a dart board LOL.:-)
He never rubs his tummy but it now has lots of red spots on,as he is bruising.:-P
Nice to hear from everybody so grateful for your input we need your experience,s on this site. love Eve
Hi Craig
Just read your post do not know if you have looked at the financial side of things,but i found this a great help,just to have someone come in and do some heavy stuff,worth looking into,Slim gets attendance allowance as over 65,but Etta at 54 should qualify for independent living allowance plus carers allowance.It means you can go to work and pay some one to come in do stuff and make sure Etta is alright,if not sure see or ring Macmillen nurse.
Advice do not be to proud,accept what ever is their.you see so many people struggling especially men,took me so long to convince Slim that,he was entitled to attendance allowance.
Try not to worry there are people ahead of you,we have all been there.Eve
EXERCISE FOR PEOPLE OVER 6O
I,ve tried this and it really works !
Begin by standing on a comfortable surface with plenty of room either side.
With a 5 lb potato bag in each hand extend your arms straight out from your sides hold them there as long as you can.Try to reach a full minute,and then relax
Each day you,ll find that you can hold this position for just a bit longer.After a couple of weeks move up to 10-lb potato bags.
Then try 50lb potato bags and then eventually try to get to where you can lift 100 lb potato bag in each hand and hold your arms straight for more than a full minute (i,m at this level)
After you feel confident at that level,put a potato in each bag.
BOOM BOOM
Eve
Hi Sue
Nice to hear from you,did not think I would get any replies ,so glad you proved me wrong.Must state from the start Slims is not in this position but I have no allusions,that if the Velcade does not work,which path we will be travelling.
I am not shy,in terms what the future might hold, my attitude is the more you know, the more chances you have.I think I read your Post,but did not take it in,as not common knowledge about trials.
To put it bluntly are we talking about,last chance!!!!
If this is the case, may I ask,What is your response to the treatment
I do realise this must be hard for you,but in some ways you or your partner is a bit of a trail blazer for a few people on here.
I hope to hear from you, but I do understand if you find it heavy going. My thoughts are with you love Eve
Hi Anna
You have come to a good place for Information and support,so may i say welcome to the club.
My husband is on Velcade,with the added complication of not knowing if Velcade is working until bone marrow taken,so bloods is the only way of telling us about his general health I get results at the start of each cycle,and it just helps me to know he is in the margins.
He is down for 8 cycles in theory this will go ahead unless the Velcade stops working or like Dai who reached 0 and is in remission.pp levels of 6 is good ,but I think if your worried speak to hospital,they tend to make decisions as a team so I do not think they will just with draw treatment,
Its hard supporting people you love,and keeping there spirit up,as well as having your own problems as Bridget said,there are lots on here with added problems.Can you get your dad to go to a support group,or may be talk to Ellen who could put him in touch with someone with Myeloma,or just get him to look at this site,its not all doom and gloom.
Does he tell the nurses about his problems with his stomach because he can have tablets which help,as for sleep and fatigue if its bad he can have sleeping pills.
My husband just goes to bed he listens to his body some times he is up all night,not very convenient but,does not do any good to fight it,go with the flow.
I hope this is some help,I think it would do your dad good to come on this site or go to a support group,the more positive your are the better you feel.Eve
Hi Everyone
I would agree ,we need to talk about different hospitals and the general treatment we get concerning cancer it does vary from trust to trust also what drugs you might be entitled to depends on were you live.hence postcode lottery.
When you consider that myeloma is only 1% of cancers and bence jones kappa light chains is one of the rarest of that 1%,it does make you think how often do consultants come across it,they actually treat all myeloma ,s the same,yet some are more aggressive than other .
Slims consultant is or was Dr Pocock the man who fought to get the trials to E kent we have never ever seen him,we have seen the same doctor through out except for once and that was a complete waste of time as the poor man,did not know were to start it was easier to let him look at my file to get more of an idea of why and what he was dealing with,i do not think We could cope with seeing a different doctor each time,its bad enough just dealing with different doctor,s because Slim is ill,they look at you ,if to say and what do you know,as I tend to answer for Slim because Slim does not see himself going down hill,I know when he is ill. and in general doctor,s do not like dealing with the carer,this is very hard with a strange doctor.
Touch wood it does not arise very often.
I have been told there is a department in the hospital that try,s to make departments more efficient like a time and motion study,and this is what is needed in my hospital not because the staff are in efficient,but for better co operation between departments patients should not have to spend hours just waiting around for drugs.I do envy Dai who has his bloods and Velcade inside a few hours.Slim has his bloods taken at 9 and we are lucky if Velcade is up at 3 oclock then first day of cycle we can wait hours for drugs we watch staff come to work and leave for home,and we make 2 trips 60 miles all together.I all ways thought hospitals were there for patients not staff. LOL:-P 😉
To Min and Sarah I think everyone feels like you do that big WHAT IF we as mere mortals cannot do much about things mainly because of lack of knowledge,
We need to keep talking about these things treatment conditions of the units,the way treatment differs,because if hospitals and doctors are looking at this site,they might have more understanding how frustrated we feel,and as David said,how would they feel if they were in our position. Love Eve
Edit today Daily Mail page 43 article by Dr L Kirkpatrick on fighting cancer is well worth a read
Hi Jo
Nice to hear from you, yes in the camper only way I can get Slim away,only going local at the moment,mainly so I can take the car it just a change of scenery takes your mind off things.
Decided to get someone to decorate as if I start it Slim will insist on helping,so clearing thing this week,and going away for awhile,painting and new floor being done while we are away.
Will not be doing info day in London,whole trip is just to much.
Have you any more holidays planned?,
It is the first time since last October,that he has been fit enough and had any time off with treatment,finished today and will not be back to hospital until a week Monday for 4 cycle.
Hope you are keeping well and that sword isn,t swinging above your head love Eve
Hi Everyone
I can understand how you ladies feel about the menopause,I had it forced on me,they had to remove my ovaries although I was older,Did not like the idea but as I had trouble with one said the other one could get a growth on it,once i got the all clear never looked back,Lot of the tiredness went away so its not all bad,gave me a new lease of life.
As for Dai well unless your changing sex,it,s defo the chemo Slim is the same, was worse on CTD but Velcade is the same feeling hot and cold more than the climate is.
Its the hair Falling out on Slim ,blocks the plug hole up,and it,s like straw,thinning all over,not falling out in clumps:-)
I do believe Men go through a menopause too so you never know Dai. Eve
Hi
Nice to see you are doing well Bridget,ans to see that you Sharon have finished your Velcade,just looking at the way people have responded to Velcade, Dai not sleeping you Sharon tired out Slim not sleeping and no side effects,what makes the same treatment re act differently on people.
Waiting till November for a PET scan is a long time,when i asked about one for Slim they told me it would not tell them what was going on inside the bones!!
I am trying to think positive,if Slims well then it must be working,but in a similar position to you Sharon,will not have bone marrow taken till end of 4 cycle then results 2 weeks later.So results in November,New ground for us I don,t know how you cope with it Bridget,no guide lines to go by,except how you feel and MRI scan.
Slim no longer has the pain in his chest,and MRI scan no change,so it is just plod on with treatment.We are managing to get away for a few days on his week off drugs,find he relaxes more and does not over do things.
The way Slims loosing his hair he might be in need of one of your hats BRidget LOL Love Eve
Hi Everyone
Yes Dai it is a postcode lottery for treatment ,and from what I am hearing Nottingham does seem to come out tops.
East Kent is lacking lots of things,some patients with other forms of Cancer have to travel as far as Maidstone for specialised treatment around 65 miles one way,A friend of mine had to do it every day for a week,
The only way I consider we are lucky is at least we have the trials in the south east.:-) I understand what Helen is saying in terms of the trials,but the fact is if they think the way forward is trials,you have to make a choice and decided trials as Slim would not have 10 years any way,By going on trials there is no wondering if you will be given the opertunity for the next drug,it seems Leeds Manchester,Nottingham,and London are the trail blazers in new treatment,Kent is still having talks on injections for Velcade.Eve
Dear Julie
May I add my condolences to you and your dad.
Thank you for letting us know as so many people just go off site and we never know what has happened to them.
So glad you mum had the passing she wanted in her own home with her family with her,it must be a comfort to you both that your mum passed peacefully.
Kind Regards Eve
Hi Gina
Nice to hear from you,sorry it is not better news with your mum,how are her lungs,are they any better after the treatment.
It does seem to be one thing after the other,hope she begins to feel better now she has had some blood ,do not know much about revimide except in trials as the other side of CTD.
Hope it works and you can keep your mum positive,and looking to the future Love Eve
