[peggyParticipant]

Well, I've got the diagnosis now and it all seems to make sense; the undefined aches and pains over the last few years, I'd almost started to believe it was all in my mind. I've got severe kidney impairment, had migraines for years and have started to walk with an odd gait especially when tired. And the fatigue!
Birthday tomorrow and I'll be in hospital discussing treatment options.
My main concern is not for myself but for my teenage daughter who has special needs, that's what makes me cry. I just hope that social services can come up with a helpful support package because I just can't seem to work out all the logistics of appointments and drug cycles.

Peggy

[eveParticipant]

Hi Peggy
My if you have not got enough on your plate and this has happened you must be devastated.What a start to a birthday.It will get better,I know that it does not seem this way right now,but there are people ahead of you with not just myeloma,but extra problems as well so you are not alone on this journey.

Its my husband with mm,I also have a grandchild with cp,I can no longer help my daughter,the way I use too,It is amazing how things resolve them selves,I know its hard right now,but deal with it one day at a time.

Peggy try not to think too far ahead,looking after a teenager with special needs causes fatigue plus this illness,i know from my daughter,when it gets to a certain point,social services do step up,get in touch with your social worker straight away,get your doctor on your side.A new package will be worked out.

You do not say were you are,there are support groups in some areas ,this sight can always answer questions,and be there for you,Ellain the nurse is very good,phone or e mails.there is so much to take on ,so just do a little bit at a time,it will seem so much easier in the future,charts for tablets,make life easier,when to take them,becomes easier.
Do you have any support at home,?
After you have been to the hospital post and ask any questions you like someone will be able to help you.
Try to enjoy a little bit of that birthday,even if you do not feel like it.

best wishers Eve

[tomParticipant]

Hi Peggy

A warm welcome to our ever growing band of MM'ers

Yep I was same but I didn't put them both together for some months after I started treatment.

Am sure you will get the help you need as and when for you and your Daughter, if not shout out loud.

Good Luck on the treatment you start and have a good day for your Birhtday (well as best you can in hospital)

Love

Tom "Onwards and Upwards" xxx

[BADGERParticipant]

Hello Peggy

I hope you have a happy birthday tomorrow I am sure you will get some help with all your meds and your daughter, speak to MacMillan they can be so helpful I was diagnosed with renal failure so not had an SCT but I have managed so far on drugs alone I was diagnosed in jan 2009
Good Luck
Love Jox

[peggyParticipant]

Thanks all for your replies.

Badger- what do you mean by SCT?

Have started on steroids this morning in addition to my usual cocktail. Though I did ask a lot of questions at hospital yesterday I forgot to ask what to do over the weekend if I feel really ill. There's lots of phone numbers for weekdays but what for now? Hopefully I'll be okish but I do have allergic reactions to quite a lot of drugs so I am a bit anxious with reason.
Thankfully I managed to get down the 40 odd tablets more easily than I had expected so that's one thing to be grateful for.

Re support, yes I've got some. are Some friends are coming up trumps, others due to their circumstances can just offer emotional support. Not belittling that in any way but what I need is practical help. Sorry to sound a bit cynical but I've been feeling off colour for a long time, mention the C word and people do offer help but before that there was not much. The value of a diagnosis I suppose. We noticed the same with my daughter: before diagnosis she was just, in one person's eyes, 'a wilful child' whatever that meant. Hope I've not upset anyone by my little aside!

All the best to everyone on here

Peggy

[BADGERParticipant]

Hello Peggy

Rant away we all feel like that especially when first diagnosed and on steriods! and yes there will be people who dont want to know you now but they are not worth worrying about just appreciate true friends. SCT is stem cell transplant
my kidneys were too bad and I didnt want to risk the agressive chemo which you have to have with the transpant knocking them out completly my choice
as the thought of dialysis for the rest of my life filled me with horror
you may be different a lot of peoples kidneys recover enough for transplant
Keep in touch and let us know how you get on
Regards Jo

[CarolBradley1Participant]

Hello Peggy
So sorry that you have joined us – but at least you know what your dealing with now and this site is a big help – just about the only place you can have a "little rant" as everyone understands completely – were all in that place at times. It´s difficult to let off steam with loved ones as you don´t want to upset them any more than they already are – I know it´s all very overwhelming but take heart – things are moving at a really fast pace and the outlook for us is so much brighter than it was ten, even five years ago. I honestly could never have imagined when I was first diagnosed 5/6 years ago that I could be doing the things I am now.
Thinking of you
love
Carolxxxx

[GillianParticipant]

Hi Peggy,

I like you have just been diagnosed and it is such a shock, I quite understand how you bare feeling right now, and as the others have all said there is a great support network out there, so start shouting now for the help you need especially the extra help for your daughter, you can always decline it at a later stage if you don't require it. Members on the site advised me to take anything that was offered to me and they were certainly right. At the time you think I'll be ok and won't need it, but it's better to be ahead of the game!,,
Now keep your chin up, come and rant and rage, the site is great for that and we are all in the same boat.

Post again soon we loved hearing from you,

Take Care
Gill C

[peggyParticipant]

Hospital today and been randomised to RCD in the trials. I've been informed that the "R" alone costs £40,000 pa ……I didn't know that my value was so high! I'll start the new chemo regime on Sunday so I have the opportunity to take my daughter out on Saturday and then I'll have to be taught how to self inject heparin (or it's equivalent) so that I can still enjoy my time without having to wait for the daily nurses call. What fun. And I didn't realise that I would be sooo excited to be told that I have been allocated Revlamid….one learns fast.

So far I've been ok with the steroids. No adverse effects whatever…just hope it's the same with the RCD. So think of me on Sunday, 50+ tablets to take on that day but thankfully it's only that many on the one day until the next cycle.

[MinParticipant]

Hi Peggy
Good luck with your mammoth pill party! someone wrote on here to put them all in a carton of yogurt then they go down easier.
£40 0000 Because your worth it…..Revlamid is so easy to use from the point of view of your not tied to attending a clinic or day unit twice a week. so much less tying. But still makes you very tired too.
The daily heparin injections are easy once you get used to them, the thing is not to pinch too much or you give yourself bruises. Be gentle with yourself, the needles are so fine you wont feel it. Or thats what I used to tell my husband when I did it for him LOL. I got sick of hearing him tell me i hurt so he did it all himself. Became a habit with the evening news as his warning time.
Best of luck with it all
Min

[eveParticipant]

Hi Peggy
Nice to see you have picked up a bit,its not to bad once you start with the pills,Slim is on myeloma trials ctd side he has to inject himself ever day,remember not to rub the site it will cause bruising!!.
no side effects with steroids!!!(not a little bit high):-P full of energy;-)
Enjoying food:-)well i believe you LOL.
Did you get a little bit of fun out of your birthday?if not celebrate it again before Sunday.
Keep Posting to let us know how you are getting on.Eve

[mhnevillParticipant]

Hi Peggy

Lots of luck with the trial – let's hope it kicks te dreaded MM into touch very quickly.

Very best wishes.

Mavis

[peggyParticipant]

Hi all,

Thanks Min for the tip about the yoghourt…it helped with the first days load.
Unfortunately I am only permitted to have yoghourt max twice a week so I'm reserving it for those days when I have 60+ tablets..other days I'm back to loads of oats like a horse.

I've also seem to have cracked the self injecting with fragmin : I watched while the nurse did it the first day, tried myself the second but pushed the plunger rather too soon, successful this morning and tomorrow is the last day that the nurse will call before I'm left on my own. Maybe I can have a day or two away after all.

Touching wood I've had no adverse side effects with any of the medications, not even with the dreaded Dex. Peggy

[GillParticipant]

Sorry your original post past me by somehow. I am so pleased that you seem to be managing a little better now. Belated birthday wishes

Gillxx

[DaiCroParticipant]

Hi Peggy,

Does your daughter like yoghurt? You can buy a stock of those very small, petit yoghurts… you just peel back the lid, drop the dex on top and one good scoop picks them all up and they go down so easily… followed by a drink of water… you can then put the rest on your daughters cereal if she likes it… but given the size of the pot two should suffice:

Monday, scoop – lid back on & in the fridge – Tuesday repeat = 1 pot Thursday, scoop – lid back on & in the fridge – Friday repeat = 1 pot… hardly anything wasted and by far the easiest method.

Call me Mrs Beeton. 😀

Nice to meet you – all the best with your treatment.:-)

Dai.

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