[eveParticipant]

Hi Siobhan

My name is Eve,I left a massage for you on your mums facebook page,I kept looking out for your mum posting,because no matter how ill she felt she would always take time to reply to new posting.

She was a special lady and will be missed,as you say she is now out of so much pain,I am so glad her passing was peaceful,and hope all the family hold on to the fact that you were all very special to Bridget,
My thoughts are with you all at this sad time.Eve

[eveParticipant]

Hi Rachael

Its such a shock to the system, In many way,s your just glad you no what it is,we have all been there,if you keep reading the back post I am sure you will find lots of answers to you questions.

Only advice I can give you write you questions down before you see consultant,They see this thing every day and are so used to it,they forget there are real people sitting in front of them.

Good luck keep in touch Eve

[eveParticipant]

Hi Jane

You will have to go out and buy yourself a big floppy hat and factor 50 sun cream,lol. My brother who lives on the Wirral told me you actually had some sunshine the other,but you know what these scousers are like,all talk.:-)

Slims eating better,so he has a little bit more energy,its hard work for him as he has no taste buds left,so he has a nagging wife on his hands.Love Eve

[eveParticipant]

Hi Stephen
Slim had his SCT and came home on the 1st of June,since then its 2 trips to local hospital each week to check on bloods plus any extra trips for platelets,he also spent 3 days in local for fluids,plus blood and platelets,have been back to Kings who are happy with him,and want to see him in 2 months.
My own opinion is this is were the hard work begins,specially for the carer,you need to keep the house very clean,plus spending time cooking meals that are not eaten,its a little and often,Slim likes to go out,and i do not think he is up to driving so it all takes time,
The drugs are a mine field in themselves,I am getting good at doing charts.
Some peoples neutrophils just keep increasing but Slims have been going up and down,once they keep going up everything else like platelets should catch up,I have come to look at it as another learning curve.

I do hope you have a good SCT,and make a quick recovery,everyone is different,if I was you I would eat as much as you can now,because it will be a long time before you enjoy food again.Eve

[eveParticipant]

Hi Jen

We all felt like that at the very start,medical jargon test results and wondering what is going on.

Some people get confused like your dad,my husband is the same,there is no way i could let him go for treatment on his own,after 18 months of chemo and treatment,he is not the person who started this treatment,it does not happen to every one,but in Slims case it has,:-P

make sure your dad drinks plenty of fluid,it sounds if your dad has Bence Jones kappa light chains,Myeloma.It is away of measuring how the Myeloma is doing,also the bloods so a number of results tell them what is going on in your dads body.These numbers will come down as treatment progresses,and Velcade is having good results.:-)Ask for a copy of the light chain results then you can compare them,and see for yourself,how well he is doing.I like to know what is going on,Slim has a big red file at home,it helps when he is in hospital or seeing a new doctor,as they do not have time to plough through the paper work,so I can often put my hand on the results very quickly,computers are good,but SE Kent does not link up with SW Kent,They only hold information on treatment in there own area.!!!

Take one day at a time jen,you have joined your Dad on a long journey,He needs all the support you can give him.Love Eve

[eveParticipant]

Well i have to say Stephen,they sounded if they did a good job on you,Slims was very different.

We travelled 86 mile went to chemo out patients were he was given his chemo to help generate BMC out into blood and sent home with a five day course of injections.Travelling 86 mile back. Total 172 mile round trip to Kings London from the south coast.We asked about him staying in,answer no.

After a period of time went back for harvest which took 2 days,ending with 4.02 million
Then we had to go back for test eg Echo sounding,ECG,liver test and a few more which I cannot remember 7 app in one day plus consent forms signed,SLim would have signed it just to get out of there.Then home again .

So one can only assume different hospitals do things different.Eve

[eveParticipant]

Hi Gill

It must be a very hard time for you at this moment I do hope they find something that will help Stephen,I do know some myeloma,s are more aggressive than others,i do not know if you remember Sharon who use to post,she had a more aggressive type.

I found it difficult to get Min on facebook,so i went through Tom or Dai they e mailed my bit and Min accepted me,She is doing very well I think she still looks in on here,but she is widening her world.

Its nice to hear from you Gill i think when you get to your stage you worry about posting,please post if you need us.
You were right about Kings food it was awful poor Slim is 9st 8lbs now,I remember you saying about Stephen going shopping and looking awful,well that,s Slim at this moment,the only good thing to come out of it is Slim has not had to shave now for over a month and he has lost his Dennis Healey eye brows:-) Love Eve

[eveParticipant]

Hi Jane

Welcome to the site I am doing catch up,I loose track of what is going on,that,s why I am late welcoming you.

You sound if you have been through the mill a bit,i take it that you did not have a SCT because of age,and treatment that you have already had.

It takes awhile for energy levels to return after CDT,my husband had it then had to go on to Velcade which he found better and it did the job,he was able to go on to have SCT,but he is back to being so tired again,I believe it can take months for your energy to return.

So be kind to your self and enjoy the summer when it comes:-S

You live in a nice place in the Wirral,I lived in Liverpool many moons ago and now live in kent we get a lot more sunshine than you.Eve

[eveParticipant]

Hi Onlyme

So sorry to hear your news,cannot help with your questions as Slim is behind you on this journey,lets hope the Rev works it does seem to buy that extra time,which in its own way helps you to adapt.

Sorry I cannot be much help,but if kind thoughts help,there is plenty coming your way.Eve

[eveParticipant]

Hi Ian

You must be feeling a bit down,all that treatment and mm taking hold once again.i hope the velcade does the trick again and would be interested in the result as Velcade worked well for my hubby first time round,and its good to know what is round the corner.

Some times I wish I could swear on this site,and i am too old for the under 50,so will have to do with the swear box at home.Eve

[eveParticipant]

Hi Sue

Welcome to the site
Glad to see you managed to get some help with your questions,you should find on here if people cannot answer your questions they will point you in the right direction.

Let us know how things go with hubby remember there are people who are here to help you.Eve

[eveParticipant]

Hi Sherif
I have come on your post just to say hello,and say I hope you find what you need,and wish your mother well Eve

[eveParticipant]

Hi David

Its all coming out now,its not that you could not sleep,its because you did not want to sleep:-) . Must admit I have done a few champagne breakfast after all nighters the only problem was I could never remember who came to breakfast,so never kept in touch.(mess 41 commando unit) bar would not dream of chucking you out.

Had 4 hrs sleep so feel great,ready to get some work done before my cleaner comes tomorrow lol. Love Eve

[eveParticipant]

Hi Dia and Tom

Well Tom I know I said I am just the carer,but I forgot to mention everything else,but as it would take,all day I will just except your praise:-P lol

Yesterday I took Slim to Kings starting off at 10am,getting there for 1pm and then spending hours waiting for bloods,doctor,then prescriptions ,getting away at 5pm,and getting home at 8pm,got to bed at 10.30pm,and guess what time it is now,:-S.As you can guess for Slim it was hell not enough food or drink,spent most of this early morning unable to sleep.

He,s just gone to bed,so I will drink my tea and follow him!!:-)
night night .Eve

[eveParticipant]

Dia

My eyes have so much grit it them,through lack of sleep,and I am just the carer :-SEve

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