[les81Participant]

hi my name is les 63yr old man. trying to think what to write so much has happened in last few months. i am a carpenter always fit until i started to feel sick all the time, went to my dr had blood test and within 24hrs i was in hospital with advanced kidney faliure. 3 weeks later was told it had been caused by myemola, ( trust me to get 2 major things wrong at once lol).
really starting to struggle with walking out of breath so easy, legs hurting unsteady on feet, not eating smell and look of food makes me sick. and so tired all the time. i could go on so many things going on inside me.
mentally i am drained, all my dreams of travel when i retired have gone as on dyalisis 3 times a week,without our dreams we have nothing to look forward to. all the things that i took for granted i know find i can not do even simple things. the travelling to and from hospital is taking its toll on me 14 trips every 20 working days at 40 miles a time and this time i am getting paid by my firm but am getting worried about the amount it is costing me now and i am on no benifits so no help out their.
this has made me feel better to get it on paper fot others in same position to see.
Les

[eveParticipant]

Hi Les
Nice to hear from you and you have come to the right place,this lot on here will soon cheer you up.

My advice is take one day at a time,what seems awful at this moment,will not seem so bad in the future,but you are going to feel worse before you feel better.

First have you applied for a blue badge,or any money like attendance allowance,or independent living allowance or carers allowance,please get in touch with the MacMillan nurses who will help you get the money that is yours by right.You will need this help in the future,so best have it in place ready.So you do not have to worry about money.

My husband is the one with MM.diagnosed January 2011,he was one of the unlucky ones,that had to have CDT plus Velcade before they got it under control.20 months later after SCT.he has full remission.:-)Lots of people do not have the same problems,It is different for every one,so take one day at a time.
Plan some thing every day even if its just going for a short walk,give you self goals to reach,every thing is do able,you will get there in the end.

End of August we 9 days in our Motor Home,in France came back and went on a Cruise to Norway,it is doable.
Your Kidneys might regenerate,my husband was admitted with AKF his kidneys improved,so was able to have SCT.He had a few blips on the way,lost 4 stone plus 5 inches in height,eat a little and often,I found it easy to keep little pots of custard in fridge so quick puddings could be made.Try food in small quantities as you taste buds change.
I am sure you will get lots of replies with lots of good advice.Eve

[les81Participant]

hi eve, thx for reply.
had mcmilliam around and they have filled in all the forms, got my blue badge, waiting to here about DLA the DWP says they are going to write to GP so i need to get in and see them as i have not been to them since all of this happened so they have no idea what i am going through.
i am on velcade start of cycle 4 on friday and cyclo what ever the rest of name is, i can live with cancer but it dyalisis that i am having most problems with, my renal consultant does think they will get better but you always have that doubt.
i just feel down sometimes but no energy to do much to boost myself at the moment.
les

[tomParticipant]

Hi Les and Welcome to this Merry Band of folk ? yes we are merry most of the time 😉

Think Eve has coverd most of it so at the moment I will wish you all the best in your trip with MM

Tom "Onwards and Upwards"

[MicheleParticipant]

Hello Les and welcome.

All I'm going to add is….keep those dreams of travel well and truly alive because once the drugs and the dialysis have done their jobs, you'll need that passport and will be out and about again before you know it. 😀

Keep with us!
Michele

[JoanneKParticipant]

Hi les…

I too am new to this forum. My dad was diagnosed last December and it has taken me a long time to take the plunge and join this forum but the people on here have given me great comfort by reading their posts and I hope you can get some strength from them too.

all the best with your treatment.

Joanne x

[les81Participant]

thx for all the messages, makes you feel so much better when you know your not on your own.
Les

[VickiParticipant]

LEs,

Welcome, hi and do not give up. My partner Colin was diagnosed age 55 last October 2011. We thought our world had come to an end, and it's true to say we are experiencing a different life at the moment, but things do get better..Colin has had 7 cycles of treatment and is awaiting an SCT. It is has not been without it's ups and downs but it is doable ;-). I. January 2011 Colin had down a weeks ski-ing, a weeks golf and we had been to Mexico where kayaking, walking etc had been done before we knew anything was wrong! We so much enjoy travel too. Do not give up…….failure is not an option (our catch phrase!). Believe it and you will be back to travelling soon 🙂

Vicki and Colin x

[meganjaneParticipant]

Hi Les,

I am also new to the forum. It is my husband who has myeloma and like you it was whirlwind at the start. Phil, my husband, started to have some back and rib pain and then suddenly (it seemed sudden although it was actually a month or two before the diagnosis) he was diagnosed with MM and on treatment. The treatment had to be stopped suddenly after the first cycle of chemo as he needed urgent operations on both of his legs to put nails in to stabilise his femurs. He has now completed his fourth cycle of chemo on the PADIMAC trial at St. Bart's. It was tough at the start but Phil is responding well to the treatment and is feeling much better now, as the others have said there are ups and downs but I have found this forum very helpful, suppotive and informative. It is wonderful to have the support that is offered here and to know that you are not alone. Take it one day at a time but do keep dreaming, we were also worried we would never travel again but reading all the posts on here about where people have been and what they have done has given me hope that we will go on more lovely holidays once things get a bit better.

Megan

[BADGERParticipant]

Hello Les

I understand your shock same thing happened to me my creatinine was 597
i was being prepared for dialisys but my kidney consultant gave me a chance put me on a high dose of sodium bicarb and along with the high dose of steriod my kidneys improved a bit he waited to see what would happen so i have just avoided for the time being the dialysis i have bet 15 and 20% kidney function but i know just a simple infection could knock them out completely i am with you I know MM is terrible but i felt worse about my kidneys and still do its like the sword of damaclese is hanging over me every time i go to the clinic because i felt like you do no life and no freedom
Keep your chin up
Love Jo x

[les81Participant]

thx for reply jo.
lets hope you keep off dyalisis 3 times a week for 4hrs is not any fun, but if you add in travelling time its more like 6/7hrs each time.
i just hope some time i will come off it then i can live again, so wanted to go to australia and NZ next year but looked at price for one treatment and its around £400 so will not be going in near future lol.
we will win in the end
Les

[BenzParticipant]

Les,

Don't lose sight of that dream. It may be delayed a bit but you'll get there.

There are so many positive stories on here – and likely many more positive stories from those who only occasionally post here or no longer post here so.

Don't try to deal with it all on your own…speak with folks…whether virtually or directly. Whichever you have made a good start. There are many, many good people who will do their best to assist.

Take care.

Scott

[adamsp41Participant]

Hi Les…my journey with mm is almost identical to yours…I am now 58 ..I was diagnosed in Sep 2008 with asymptomatic myeloma and it decided to become active in Jul 2010…causing acute kidney failure…my kidneys were only 10% efficient.. my symptons being almost exactly the same as yours.It was touch and go if I was to go on dialysis but I started CRD immediately went through 5 cycles responded well and had an SCT in Jan 2011 (dialysis ruled out )…my kidneys are now functioning at 46%-49%..I am now on Myeloma X1 trial and am in stringent complete remission.I can relate to the feelings and emotions you are experiencing as I had many similar….but…head down kick the damn thing right between the legs and look forward to eventually going on some hols…(infection dependant )I try to get away as much as possible …ok not the places I would want to go but there has to be a compromise…head up and as you say …you will win ..Phil

[les81Participant]

good news today, saw the consultant and my light chain numbers are falling fast from 6,500 6 weeks ago to 650 3 weeks ago, so with luck a couple more cycles of chemo and i will be off the velcade. at that point i hope to see some improvement in kidney funtion with a lot of luck.
les

[tomParticipant]

Hi Les

Thats the way to rock 😎 wishing you luck for getting off the velcade and kidneys up and running smooth.

Tom "Onwards and upwards"

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