[AbiParticipant]

Hi there 🙂

Sadly my Dad has recently been diagnosed with MM.. we are currently awaiting results for final confirmation of staging.. treatments etc but they have suggested that he may be in the later stages already due to his signitifanct kindey failure. He is 61 years old, has 4 children, with me being the youngest at 20, and 3 young grandchildren. To say the diagnosis has been a shock would be a great understatement.. I am sure most of you will agree that nothing can really prepare you for it.

We have our first appointment with Haematology on Monday and, rather cheekily, I was wondering if any of you have any advice? I will be accompanying my Dad as an extra listening ear, and would really appreciate any thoughts on the kind of things that might crop up that we won't have anticipated.

Reading some of your posts on here has made me realise what a supportive group you have become, and it's really given my hope to see how brave, and positive you are – so a big thank you for that!

Kindest regards,
Abi x

[DaiCroParticipant]

Hi Abi,

Although the general treatment plans may seem quite uniform MM is a very individual disease. Although your Dad may seem to be in the 'later' stage it is surprising how well some people respond to treatment… kidney failure included. We have some people on this board who have started with similar symptoms to your Dad who have responded well to treatments and are still going relatively strongly. I was certainly in an advanced stage when I was finally diagnosed but my problem was bone damage rather than kidneys… which, touch wood, I have never had any problems with.

Take notes and ask questions… if you don't understand then say so. You will most likely be introduced to a lead nurse at some stage early in the process, ask for some time to sit down with them and ask questions or clarify what you think you know… although they are very busy they normally have far more time for individual cases and questions than the consultant… not only that, they are used to your position and will make time to put your mind at ease regarding processes and procedures.

So will we. 🙂

Where are you and what hospital will your Dad be attending… there may well be someone here who can point you in the right direction re lead nurses and other helpful staff.

The initial shock can be devastating but you will soon learn the ropes and how best to proceed… the best advice I can offer at this time is to stay positive… scorn negative vibes and don't allow or encourage any sort of funereal atmosphere at home… especially in front of your Dad.

Stay strong, focus on the first steps and I wish your Dad a long, long journey with good bouts of remission. 😎

Dai.

[PerkymiteParticipant]

Welcome (?) Abi, this is a very good site for information, it is dedicated solely to MM as you no doubt noticed. There is a lot of old information out on the WWB so be careful when surfing.

With your first appointment Monday it will probably be too late, but some people on here take a recording device to the Consultation. This has many advantages over purely relying on your memory! I am not sure of the site address but I am sure one of the others will be able to post it.

Keep us informed of your Dad?s progress we will always be here to help if we can.

Kindest regards ? Vasbyte

David

[jmsmythParticipant]

Hi Abi

I am sorry that you have to join our merry band but a heartful welcome. You will get support, information and even fun (although you wont feel like that now) from the people on this site. I agree with David about the recorder. My husband has MM and Elizabeth (on the forum) mentioned about the recorder. I bought one from Gizoo.co.uk. It looks just like a memory stick and I take it with me when we visit the consultant. They bombard you with info which I could not remember all that she said. This is great. Too late for your appointment on Monday but I found it a God send. I hope things go well for you on Monday. Please keep us informed.

Love Jean x

[mhnevillParticipant]

Dear Abi

Like the others I wanted to say welcome to the site and to assure you that things are moving fast with the treatment of MM, and as Dai says, many in a similar position to your Dad have responded very well to treatment. It isn't a walk in the park, but neither is diagnosis the end of all hope.

All best wishes for Monday. I do hope your Dad warms to the Consultant, it makes such a difference.

Mavis

[tomParticipant]

Hello Abi and your Dad

A warm welcome to this warm band of MM'ers its a great site as you probably know by now 😀

Your first session with your Dad's Consultant will be scary and might get too much info at the start but fortunatly it will all fall into place as the months flow along.

Good Luck to your Dad on his forthcomming road to remission, its an uphill and downdale one but it can be done 😀

Love

Tom "Onwards and Upwards" xxx

[eveParticipant]

Hi Dad and Abi
Welcome to the site,It is no use telling you not to worry because your world has just been invaded by Myeloma,and your thinking this cannot be happening to your dad.
There is so much to take in,so just try to take it one day at a time,I found it useful to ask friends and relatives to stop phoning all the time,because I was just repeating myself all the time,I know they were concerned.So i send an e-mail to them just updating any changers,so now when they do phone,we just talk about everyday things rather than the Myeloma.
I would say get a booklet from Myeloma uk,and look into issues on this site anything your not sure about ask away on here or to Ellen the nurse.
Find out what sort of Myeloma it is!!!
Ask for blood results you will learn to understand them.!!!
Find out to what extent the Myeloma has spread!!!some caught early have no bone damage.
Make sure your dad listens to his body,very important,
It,s not all doom and gloom stay positive and remember there is always someone ahead of your dad on this journey. Eve:-)

[GillParticipant]

Hi Abi

I hope that your dad responds quickly to whtever treatment he receives do keep posting on here for support and information

regards Gill

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