[PerkymiteParticipant]

Hi Etta, Welcome (?) to our little band, I say little it seems to be expanding this year. I was diagnosed in Jul 2009 and to this date I do not know what stage I am at. As Bridget says some Doctors think modern medicines have made it outdated.

I look forward to sharing your journey.

Kindest reagrds – vasbyte

David

[gina45Participant]

Hi Etta and husband, Its my mum with myeloma and you doe get the highs and the lows. i stuck to this website when we found out that mum had it. This site is a godsend and the people on it are full of wonderful advice and support.
Gina x

[DebsParticipant]

Hi Etta's husband (do you have a name? :-))
I hope she's got over the flu symptoms and that they were only from the zometa….hopefully she'll only suffer the first time too.
With regard to staging, I've never been told. To be honest, I've never asked as I've just focused on my pp levels. I think it is pretty normal so I wouldn't worry – it is just another label and it's bad enough to have the MM one so I wouldn't chase for it?
Take care
Debs x

[TerryMGParticipant]

Hi Etta & Husband,
First like you I have only just joined the Forum at the weekend. What has been written before me is very sound advice but I would like to add a few things.
1 My GP told Margaret and I not to look on the internet as a lot that comes up is way out of date. We only looked up Myeloma UK after 6 months on the advice of Proff Schey, by which time we had learnt a lot from those treating me. You will have a lot to take in at first but read in small bursts. How do you eat an elephant?….. A little bit at a time!:-) 🙂 🙂
2 If you are on CDT you will have good days 🙂 and bad days:-| . Different medication is taken on different days and in effect you get rest days during the cycle. I put my monthly cycle on a spreadsheet with space for notes. I was soon able to determine that Tuesday to Thursdays would be good days for me. The other days could vary greatly so listen to your body. Dex made me hypo in my head I could do anything but my body would not let me do it. I also did not sleep so well on Dex days as my brain would not switch off.
3 The first time I had Zometa I felt like you. I told the hospital for the next time and it was given it at ½ speed and I have always been OK after that,:-) so ask next time ask if they will give it to you slowly.
4 Re the injections. I had a friend who was a big Policeman taking the same injections as me and he was finding it difficult as he was tending to stab himself. If yours are for the tummy may I suggest the following technique? Keeping 2 inches away from your navel, just press the needle gently against your skin. The skin will dip then the tip of the needle will go into the skin. Then gently push the needle to the body of the syringe and then push the plunger in. When the syringe is empty pull the body out quickly and do not rub the skin. You should hopefully end up without any bruising.:-)
I hope what I said helps, we all know what you both are going through at present but once you get into routine things will look a lot better. My best wishes and we are with you??. Terry

[DaiCroParticipant]

Hello Etta and Hubby,

I'm sorry that I missed your initial post but I thought I'd say hello and offer a guarded welcome to the forum… guarded inasmuch as I wish that you never had reason to seek us out.

I am sure that you are both in shock right now and desperate to find out more about MM and its treatments, processes and procedures… well this is the best place in the UK, perhaps even all of Europe to find out… straight from the horse's moth to coin a phrase. Please don't trawl the internet, it truly is a frightening and misleading place for newcomers to MM. MacMillans is good but this is the specialist spot and this site is all you will ever really need for information and this forum is full of patients and carers who are of equal importance in terms of knowledge, experience and support.

Regarding your consultant's reply re; stages… its a clever soundbite to say that the only important thing is the treatment but of course you want to know what stage you are at… you want to know everything there is to know about the d**mned disease at this stage… and his dismissal of the question, no doubt aimed at buoying you up, has only introduced doubt and fear.

You should be introduced to a lead nurse (if you haven't already) so ask her/him where you are… they are generally very good and your relationship with your lead nurse will be one of the most important you will make on this journey.

Most questions can be answered here, either by the Myeloma UK nurses and staff via e-mail or at the end of the phone… or by one or more…( usually more :-)) of us on the forum. With myriad experiences and a whole range of treatment, processes and procedures behind us, there is not much that we can't offer advice on (short of direct medical advice which should be directed to the staff).

A guarded but otherwise warm welcome…

Dai.

[EttaParticipant]

Me again (and yes Debs it's Craig),

Well I think she's finally past the flu stage, it's been a yucky week for her feeling very drained and tired but not able to sleep. She says she feels very "shaky" inside, just managing catnaps throughout the day.

On the plus side towards the weekend she's been sleeping better, but only when I'm next to her (must be a comfort thing i suppose) but I'm going through books fast!

Many thanks for the well wishes and support from everyone. We're giving the trawling the Internet a miss as, like many of you have pointed out, you find a lot more info out from here.

Terry, thanks for the tip at 1/2 speed I will mention it next time we go.

Jo, Etta is 54, I'm sure she wouldn't mind me telling you 🙂

Anyway, it's pill taking time so just going sorting out her meds.
Thanks again everyone and keep well.

Craig

[brochoParticipant]

Hi Craig I am glad Etta is over the worst You two will get through these times as you seem like a very strong partnership, I know I couldnt manage without my husband Just a word of caution though try and make some time for yourself that has nothing to do with myeloma or hospitals as it can take over your life , so try and have some fun too love Bridget x

[tomParticipant]

Hi Craig

Am Pleased Etta is over the flue symptoms re the Zometa 😀

I am like Bridget in saying Make time for yourself along this journey you will need it.

My Young Bride (Elaine) looked after me when I was going through the Mill with treatment and I insisted that she Made time for herself even on Xmas day Elaine went round Family and had Xmas Dinner at our sons house as I could not go out nor eat as at that time I was only 24 days Post Transplant :-S

Love and Hugs to you Both ((())))

Tom "Onwards and Upwards" xxx

[EttaParticipant]

Good morning all,

Just to give an update. After being bed bound for 2 weeks (we had to get the doctor out who said she was just exhausted with not sleeping, so she gave her some sleeping tablets) we went to see our consultant today.

Good news the count is down from 1176 to 200. Over the bleeding moon! Doc was very pleased, a bit concerned with the lack of sleep so they're hanging fire on the Zometa in case that was the problem. Prescribed her some knockout pills for bedtime (she's snoring like a good one so they must be working) and carrying on with the treatment.

I just wanted to say thanks again for all the words of encouragement and to share the good news. Early days yet, but hey 🙂

Looked into getting some support today too, just things to make it easier for her, and hopefully to get some help for me too as I'm running out of holidays. Work have been great so far but there's only so much time I can take off, so now we need to see what assistance we can get when I'm not here.

I'll keep you posted, and chin up everyone!

Craig

[eveParticipant]

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

[brochoParticipant]

Hi Craig its great to hear things are looking up for Etta now , especially when those pesky numbers drop really low!! Eve has already given you good advice about getting some helpand I cant add to that except to say make sure you insist on help , you are more than entitled to it!! If you can keep working I am sure it will help you both in all sort of ways not just the money aspect but keeping life a little more normal . I found my Macmillan Benefit advisor a godsend when applying for benefits so I can reccommend going to them first. I llook forward to hearing more good news from you and Etta Please pass on my good wishes to her love Bridget x

[EttaParticipant]

Thanks Eve and Bridget.

We've not had any contact with the Macmillan nurses yet, something that the district nurse was going to chase up for us. It's good to know that they are there to help sorting out the financial side for us as that's a worry at the moment.

We've been relying heavily on family and me taking days off at the moment but I lost it the other day when after 3 days nobody had got back to us, so I went on a non stop phone marathon. Got some practical help with with bath steps, shower seats etc, and finally kicked the backside of social services to come out to discuss help with care. I noticed they seemed to buck their ideas up when I mentioned the fact if we got no help I'd have to consider giving up work full time!

I will try to find out what's happening about the Macmillan nurse referral later on today then I can look into getting anything she is entitled too. I think I'm getting past the "too proud" stage now and going for the "sod it everyone else gets it" stage 🙂

Thanks again for the info, will keep you posted.
Craig

[MinParticipant]

Hi Craig
I looked after my husband and carried on working at the beginning of his diagnosis and I know how hard work it is even when your employer is trying to help you hospital appointments and the odd day when I didnt want to leave him as he was so ill make it ver exhausting for YOU.
I applied succesfully eventualy for a disability living allowance and mobility and with the help of some people who knew how to fill in the forms.(In my case the RAF benevolent fund) but I am sure the citizens advise or Macmillan helpline can help you.
It makes such a difference as we were able to employ a cleaner to come in every Friday which allowed me to have my weekends free apart from shopping and ironing!
theres nothing worse than putting in a full week at work then starting again at the weekend to lower your spirits so get yourself some help in the short term until she is better
Min

[PerkymiteParticipant]

Are you or your wife ex forces by any chance. You can get a lot of help via SSAFA and the RBL.

If you need more information let me know.

Kindest reagards – vasbyte

David

[eveParticipant]

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

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