Hi Charlie
How are you getting on with all the things going on around you,and info you are receiving??????
Charlie you asked about putting off treatment to go to a wedding,you can only ask!!!! they might consider you need to start treatment as soon as possible?? but sometimes you can be given breathing space,it does depend on your body.
My husband had no choice first visit to consultant 10am appointment admitted to ward with in 30 min,he was just worried about missing the six nations!!!!,typical man,as he was wheeled down the corridor he was retching,had AKV and hypercalcemier ( spelling ) that was on a Friday morning and he was discharged on Monday morning came out a new man,they can do wonders,he was off his head a bit high on steroids (dex ),
So what have you decided trials or no trials either way you will be looked after.Eve
Hi Jean
So pleased for you,it will give you both something to look forward to in the months ahead,I hope all goes well,and you both have lots of enjoyment from the new baby.
Hope yo are both keeping well,have not got round to scrabble on I pad,but did manage to get an invite to you on facebook,but you have to sign into it,will try again when I have time Love Eve.
Hi Vicki
Slims is on the left,as he is often the passenger in the car,it did rub the line a lot when we did the 3 hr drive from London,It looked a bit red but not infected,the whole area goes red,plus hot with infection,Slim had a little pus on his,so took antibiotics just incase,if you catch it early,it saves a lot of problems,I kept spare dressings and gloves which I used in between the line needing flushing.If they are left dangling it,s awkward,you can have the main line put in a circle to make them shorter.:-/ :-S
Vicki the course of injections they give you,has a spare one in just incase you drop one,so I do not think it would have made any difference ,Colin just needs some thing else to get those pesky cells moving .Eve
Hi Vicky
Sorry things have not gone to plan,at least you know he might be able to try the other injections so do not get to down.
As for the Hickman Line,Slims went in on the 23 April and its still in!!!!! originally they said it will not come out until his platelets are over 75,and they are only 50 odd.Its just the flushing through every week that takes time.
Feed him up why you have the chance Love Eve
Hi Charlie
I live not far from Dover and my husband is treated at local hospital,we are lucky that we have the trials in SE Kent.Slim had to go to Kings for his Stem Cell Transplant it is the nearest for us.
I can only tell you the care was excellent,they are very experienced,and have some of the top myeloma specialist it seems to me a good team of people.They do so many SCT,so they know all the pitfalls.
I have heard Southampton have ,got an excellent myeloma section.
yes claiming things are difficult,it was good advice that David gave,get the MACmillan nurses on board,when Slim made a claim,by the time they came he was in hospital very ill,so I postponed,but I could have done with blue badge and extra money months before,just to get help in the house,because when your nursing someone,you cannot keep up with everything that needs doing.
Charlie try not to think to far ahead,choose your treatment,take one day at a time,and listen to your body,if your tired rest,but just try to live as normal as possible.many people sail through treatment with no side effects others don,t and no one can predict,how it is going to effect you.Eve
Hi Tom and Helen
I know people fall into different degree,s of MM and Slim started off in a very bad place,It still took time to get AA plus disabled badge,Which I thought at the time was bad.IT did eventually come through,and helped us in many ways not as an extra perk,but money spent making like a lot easier for Slim.
As a lot of you know my grandson was disabled and I watched my daughter having to fight for everything,so may be that,s were I get my bee in my bonnet,but I would say to any one,do not give up at the first hurdle,.At the time Slims attitude was { the likes of us will not get anything why are you bothering even trying}I do know people who have not bothered to try for financial help,and I know they have needed it.I find that very sad.As you say Tom how ill do you have to be is not terminal cancer enough.
Its 2 years since are last holiday,at the moment I would settle for anything,but the drive just up to London Kings is enough to finish Slim,So just hoping he improves enough to get a break may be in September.Eve
Hi Tom
Just a quick question do you get DLA.???
Were would we be without your cheerful face,I am sure you are going to be one of the lucky ones and still going down to your club until your 100 years,They might give you free drinks by then .Love Eve
Hi David and Charlie
may be i should have said you are entitled to apply for AA,but you have to make sure you fill the square boxes with square pegs not round ones,8-)
Attendance Allowance is what it says if you need someone to attend you because you can not do things for yourself,may be just in the day or during the night.there are 2 levels.
The only people with Cancer that I know who do not get it,are people who do not apply if it is refused you have a right to appeal.
I do not think people should be negative about claiming AA as lets face it many are not going to claim the pensions they have worked so hard for.
I think the full amount is £73 a week,I am here 7days 24 hrs a day and drive because my husband is on strong drugs,attend all his needs day and night,and have done and will do in the future,do all his personal care,and at about 18 pence an hour,that,s slave labour.
So I say to any one not claiming,claim,if you need help claiming pension people will help,Mac Millan nurse,This is not just a journey about MM it is about surviving as well.
Sorry to get on my soap box David,but I find it very hard when i watch people who for what ever reason do not claim what they are entitled to,when you see other people milking the system,People with disability have taken a bashing due to adverse publicity ,so lets set the record straight Myeloma is a Cancer that destroys your bones,if your lucky like you,you will survive a broken neck .I think you will agree with me you need the financial help at the beginning,but you do not get it until you are 6 months down the line.I know from my own experience how hard at the beginning it was for me. Love Eve
Hi Di
The person I was thinking of goes under Clucky,so if you find the posting it should tell you a bit more about his treatment,its his wife who does the posting Eve
Hi Paul
The smell is enough to put you off sweetcorn for life,the funny thing was Slim could not smell it.
Eat as much as you can as it will not take long for you,to go off food and drink:-(
Lots of under wear you can just through away,its just so much hassle trying to drag you drip to the loo,so if you can get enough fluid inside you,it will be easier.
I found it harder work, as a carer once Slim was home,tiredness mainly because you are trying to keep everything clean cook lots of small meals,and I use to wake up every time,Slim moved so prepare the wife,make sure she takes things easy,and if I was you ban kids for awhile,or adults who so much as sneeze8-)Love Eve
Hi Gill
Have to reply this way as no E mail address,So glad things are as well as you can expect them to be.
Hope you manage,what you both have planned.
You were just constantly in my thoughts with not posting,and you often see on here people just fade away.
Due up at Kings on the 8th.Not looking forward to the journey.EVE
Hi Dai
I can only comment about when Slim was on CTD,then VCD.
No outward effect at all,never even put on weight,but as you know taking large doses did disguise infection,and made him think he new best,insisting he was going home,when he was on his way to ITU!!!
Once I new how they effected him,I was able to relieve some of his side effects,by explaining it was the Dex that was causing him to be argumentative and one thing I would not let him do was drive.Eve
Hi Dee
Just popped in to say hello,and wish you well.
I cannot help you with this there are a few people on here who have had kidney problems,I think there is a chap in the west country,who plays in a band,I know he had SCT even though he was having treatment for kidneys,if i am right he went on to have a machine at home for his kidneys.So do not give up hope,look at back posting see if you can find it.!!!!!
I know what you mean when your Dad looks at other people who look great,and he looks awful,have the same thing with Slim at the moment, (but Hey) we all cannot look the same:-)
You have to raise your Dad from the pit he is in,I take it he has been told to drink plenty of fluids to clear his Kidneys,does not seem right to me,if he is not drinking and being sick,ring your helpline!!!!!!!!
Sorry I cannot be of more help.Love Eve
Hello Joe
Glad to see you are getting on with your life and hope you are not working to hard at uni,that is what your mum and dad would have wanted for you,how is your mum coping,bet she misses you both.!!
I hope its your mum cheering you on at the finishing line,and remembering your Dad,Its very hard the first year,so keep your chin up and make your mum proud. Love Eve
Hi Vikki
Hope Colin is home and resting,I think we all go a bit over the top when we realise,some one you care about could become seriously ill,so we do are best to keep everything clean.It is a bit of a worrying time,just do your best,and make sure food is thoroughly cooked.Love Eve
