This topic contains 11 replies, has 10 voices, and was last updated by 
mhnevill 11 years, 3 months ago.
Hi all my name is Sue and I was diagnosed with Myeloma back in January. I am 44 years young and mother to 4 children and I work self employed. I am currently receiving no treatment as I am Asymptomatic for the time being. I have Just been informed that my Para Protein levels are on the rise so I am guessing I will be getting treatment soon. My next appointment with my consultant is August 16th so will find out any more news then.
I have also just had ultrasound on bladder and kidneys as I have had 6 water infections in the last 12 weeks and antibiotics not moving it but again no results yet.
This has rocked my family no end to the point where my husband could not deal with the news and left in April and has just announced he is divorcing me. He suffers with Chronic Depression so I can understand where he is coming from as to be fair I am not sure how I would be if in his shoes. But life goes on for me and the kids and we are on this rollercoaster together.
I have been on many sites searching for answers and I have come up with nothing of use and so was pointed here by a nice gentleman (fellow sufferer) to check this out.
My big worry is for my children and not for myself as I am a positive person and will take it all in my stride but I worry the Children will struggle and would like some advice on how to find them help with dealing with all this. My youngest 2 are aged 12 and 10 and are being very mature about it but I look in their eyes and see them struggling with the illness and the breakup of the family.
My other worry is finances as there doesn't seem to be too much information about this online and when I ring to speak to the people that would know they cant answer as it is a grey area with me as I am not sick enough yet. They say it is hard as I am self employed so wouldn't be entitled to the help that employed people receive.
I know in time I will have to leave my job as I struggle enough now with fatigue but I need to know all my options.
This is for sure the biggest rollercoaster I have ever been on and I am sure most of you have been in the same position as me with the questions that you simply cant find answers for and so I hope that someone can point me in the right direction.
I have been through all the emotions associated with the illness and I am sure I will continue to go through them for a long time yet. I didn't realise that it was such a lonely illness and my friends and family have all been supportive but I still feel so alone with it all so I am glad I have been pointed to this forum as I know I am not alone.
Thanks for taking the time to read my post and sorry if I waffled on a bit.
Keep Smiling everyone and be positive 🙂 xxxx
Hi Sue
You have come to the right place for help, support and friendship. I'm Jean and my husband has MM. You have really been dealt a double blow. I'm sorry that I can't help with any of the financial questions that you need answered or advice on supporting your children as our boys are all adults. I just wanted to welcome you to our club. They are a very knowledgeable lot on here and someone will come along soon that will be able to help you
My husband was diagnosed in 2006 and had no treatment until June last year. He started CTD and then in March he had STC and am pleased to say he is In remission. Don't apologise for waffleing this is the place to do it and rant if you need to.
My best wishes to you and as I say someone will be along soon to help
Take care
Love Jean x
Hi Sue.
Welcome to the forum. Nobody wants to be here but here we are. You'll find lots of info, advice and support here. We're generally a good bunch but we all have our emotions so sometimes we come on here to have a right good old moan.
The first thing I'd advice you to do would be to give the info line a ring and ask for the leaflets they have. They cover everything from first treatments to financial advice. They are easy to read. Don't be afraid to ask ANY questions on here, however trivial you may think it is, someone – well several members will reply and answer or point you in the right direction.
Everyone's journey is different and everyone's response to treatment is different too it's a very individual disease.
Sue pull up a chair get your feet under the table and join in. We laugh, cry, shout and moan together here but most of all we're here for each other.
I hope your rising para proteins don't mean you have to start treatment just yet.
Welcome once again Sue
Every day is a gift.
Unwrap it lovingly.
Andy xx (a nice gentleman???)
Oh dear Sue, what a mess. Some kind of chaos that a few months ago you never even dreamed of.
First of all welcome to this lot, we are not a bad bunch, whatever this horrible disease throws at you someone here on this forum has been there and hopefully can answer your questions.
I'm sure that after seeing the specialist the way forward will be clearer. Have you got someone who can go with you? I still always write questions down to ask when I attend clinic.
As far as financial aid is concerned try talking to Macmillan nurses, they may help. Or as Andy says Myeloma UK will help all the way.
Don't go reading to many other web sites, they will frighten the life out of you.
This is such an individual disease and therefore an individual journey, we are all at different points, and each response to treatment is different.
I was very saddened to read your story.
But hey, you have life.
The best of luck with everything, keep us posted.
Regards
Tony F
Blimey sue,
I don't want to sound patronising but you are taking all of this so well. You are amazingly positive. My partner Colin was diagnosed in October 2011 and it was a bloody nightmare. He came through to sct in November 2012 and is in full remission now. That said we don't have young children or other pressures of divorce and you are self employed….wow 🙂
From your husbands point of view it's hard being a supporter cos you feel helpless, scared and basically all over the place. For you though it's a complete life changer! This forum is wonderful and such a support. Would your husband benefit from talking on here too?
Ask away, someone is guaranteed to know something of help! With regard to support for you and the children, money or emotional what about speaking to a Macmillan nurse?
Just a thought
Vicki and Colin x
Hi Sue , I have had Asymptomatic (smouldering) MM for about 6 years and no treatment yet so things can go on for quite a while,as people on this site will tell you its a very personal disease, and every one is different. Also different consultants and different hospitals use different treatment, so one may start treatment before others. There is a leaflet about smouldering MM on this site I think its if you click on information, you can download it and print it out I found this useful for explaining things to relatives and friends. Ted.
Hi Sue, I also have 4 children and was diagnosed with asymptomatic myeloma last August. I have smouldered for a year now and my paraprotein is quite steady at around 40 but I do not need treatment yet. I was completely open and honest with my children right from the start and after the initial shock they seem to be handling it very well. I talked to the parents of my youngest daughters' friends so that they were aware of the situation. That has given me peace of mind that she has their support. My oldest son attended the Information Day in Cardiff with me last year and my eldest daughter will come to the next one with me. Like Ted says every patient is different but this is the best place to get support and advice. The first thing I did was to request the information booklets and also a patient diary. I take the diary to each appointment and make a note of all my test results etc. I have made the most of this year and try to be as positive as possible, my daughter has been lucky enough to go to quite a few concerts etc and I intend to keep things as happy and normal as long as I can. Financially I will be stuck if I can't work but haven't tried to get advice yet. Hope this helps a bit. Take care Andrea xx
Hi there,
As I say to everyone, welcome to our exclusive club that no one wants to join. There are a couple of things that I use to help deal with things. One is to remember that no matter who you are, there is always someone who is worse of than you, admittedly there are others who are better off as well. Next, there are people out there that are willing to help with everything no matter how small or large it is.
Do what Ange suggested, get a patient diary, keep a record and drink, drink, drink. It is slightly different for me in Germany because here you are expected to take a certain amount of responsibility concerning your care so I have a complete file. As Tony says, write everything down, write a list of questions before going. Don't forget that you are the patient and they are there to help you, on occasion you may have to remind them of that and that it is your body.
As for personal matters, I can empathise a little because we have a 6 year old daughter and we know just how devestating this illness can be. We treat her on the 'need to know basis' i.e. we just tell her what she needs to know for now. We desperately want her to have a normal life and not have my illness change that too much. As for your husband going, could that be a blessing in disguise? I don't want to sound callous but it is one thing less for you to worry about and allows you to concentrate a bit more on you and your family. Anyway, you have a lot to think about, a lot to do no doubt and a lot more questions to ask. Please keep using the Forum, it is there for all of us and it can help in some subtle and surprising ways.
Hi Sue,
My first bit of advice is do NOT go on the net re MM , lots of old & inaccurate advice that will frighten you to death
For financial advice I would firstly call the girls at UK Myeloma , they are very skilled at any & all advice
This site is also brilliant at advice & keeping your morale up
The more knowledge you get on MM the better
You say you are a positive person which a big plus
I agree with Dick re your hubby , to be blunt , his stress is the last thing you need at present
If it helps you keep waffling on , lots of us do , in turn you will get a lot of nice reply's
Have you got any other adult family for support
With my family the youngest Grandkids were given need to know info , bit difficult to explain loss of hair , then it all re grew
We got very creative with that one !
All the very best to you
Peter
Thank you all so much for you kind words and advice. This is all a bit scary and I guess new to me still. I am so glad I was pointed here as reading all the posts I know im not alone and I feel like I belong to another family.
I have told the Children all about the illness and they have just been appointed a 1-1 advisor at school ready for September who they can go and talk to. They are very mature for their age and seem to be dealing with it for now but I know it will be hard for them when treatment starts. I find it hard to answer their questions most of the time as I simply do not have the answers.
The rest of my family are supportive from a distance if that makes sense as some of them (parents) are still not dealing with the news well at all and figure if nothing is happening then they can ignore it. I do have a very best friend who has been very supportive all the way but I feel guilty as he is giving up so much of his time for me and the children that he no longer has a life. I know that is his choice but still feel guilty.
As for the husband. I have come to the conclusion that he never loved me enough anyway as if he did he would be here so I will grieve him and give him the divorce he wants and that is the end of that. The children will eventually move on too as they wont see him as he lives in a different country now. Im finding this really hard to deal with as he was my husband and also my best friend.
I have been in touch with Myeloma uk and requested all the information packs they can supply and had a chat with one of the ladies there which made me feel a little better and I do see some light at the end of this tunnel im in and I will lean on them for support as well as you all.
I do still feel I am being kept in the dark concerning the illness and that the profesionals are only telling me what I need to know at the time and not the whole picture. My specialist nurse is a waste of time and if I have called her or needed to ask something she brushes it off and all she says is wait until your next appointment. Does she not see I need answers?
Im at the stage now where I don't know what im to be looking out for and not sure if the pains I have are related or they are just down to stress etc and im too afraid to ask.
At the moment I have pain in my back, hips, shoulders, neck and legs and suffering really badly with dizziness and my heart is racing. Any ideas ?
All I want to do is sleep and I have put that down to stress with the husband but along with all the other stuff is it stress or the illness?
Have tried to get appointment with gp but nothing until Thursday and the dizziness is driving me crazy as I cant stand or sit as it remains. Im also having trouble with my eyes as they lose focus but again I have put that down to tiredness and lack of sleep and food.
Sorry waffling again.. I think someone just needs to give me a shake to help me lift the mood im in…
Anyway sorry for waffling
Sue x
Concerning your pain in the back and shoulders, are you drinking enough? I keep getting into trouble because I don't drink enough, We have had 4 weeks of virtually continuous 30 degrees plus, I've been told that I need to drink upto 5 litres a day in these temperatures. When I do drink more, the pain subsides as the body rehydrates.
I suggest you ask what level of bone damage you have and where. As for the other things, I can't help but as you've heard before and will hear again, MM is an individual desease so it's a question for your consultant.
Hi Sue
So sorry you have had to join us and thatvyounare having so much to cope with. That said, having lived with someone who suffers from severe depression from time to time, for 45 years, Imcan imagine it would be he'll to continue to live with them if they were cooing. You would be carrying both of you and the children.
Have you had a full body X-ray at all to ascertain if there is any actual or potential bone damage? If there is you should be having a Zometa infusion once a month even if you aren't having any other treatment.
Consultants can be a pain, but the thing is to make a list of questions and insist on going through it. Is ther someone else who could go with you to some of your consultations? I went with a friend who was diagnosed with breast cancer and was able to ask questions she hasn't thought of. Also, I could remember things the Consultant had said which she didn't take in.
I was told, before Instarted chemo etc, which I wanted to put off for as long as possible, was that it was how steadily and at what pace your Paraprotein was rising, which was important, rather than just the bald figures.
I also read thevAmerican site Myeloma Foundation, and it is through their fundraising activities and the subsequent research projects and Trials, that have led to the new drugs available. They have a project called " Black Swan" which is working towards a core for this wretched disease. I just hope and pray it happens in your life time.
All very best wishes. Keep asking the questions.
Mavis x
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