This topic contains 10 replies, has 8 voices, and was last updated by 
Doudzer 12 years, 10 months ago.
Hi everyone,
This is my very first post and it is already making me face some of my buried emotions and fears. But somehow it seems to alleviate however temporarily some of the suffocating feeling our Damocles sword has over me. I am not too sure how to introduce myself so here we go. My wife was diagnosed with Myeloma in March this year and fortunately (if this word can be at all appropriate) for now, she is under observation.
My wife is a fantastic woman, the best wife and the most incredible mum. She only turned 40 this year and our little one just turned 3. She has been unwell for a few years now and is difficult to remember the last time she was feeling 100%.
Doctors cannot say how long my wife has had myeloma for as all the different things she has going on cannot be attributed to that. She seems to collect things such as Thyroid problems leading to Hashimoto Auto-Immune disease, fibro, etc… Barrels of fun for her basically!
Since the diagnosis, we have been able to keep ourselves busy, we sold our house and bought another which took up a lot of our time and maybe has kept my mind of this a bit, although it is there daily.
I am writing today for some advice. I want to prepare myself so that I can be as ready as can be to care for my wife whilst keeping food on the table, bills paid and our little one as sheltered from this as possible. I do not want to forget to live in the meantime as we know it could be a while as it could be tomorrow before my wife starts treatment.
To give you an idea, I am very good at not letting things get to me (so I think) as I brush most things aside unless they really need dealing with. I do also bottle a lot of stuff up as I am not used to opening up. A great cocktail! This however, I cannot brush aside and will have to deal with head on and I know I do not yet have the tools to deal with all of this and need some guidance. I will make it through I know, simply because I have and want to but I am not kidding myself.
Can anyone give me some advice on things I could do to prepare myself?
Also, are there any places I can go to talk, break down or take refuge from time to time? Online or in Hampshire and nearby.
How do I stop feeling guilty when wanting to think or say I rather than we?
How can you explain this to a child?
How do I get those negative thoughts out of my head?
Etc………….????
………….. WTF?
I know that I need to take care of myself as otherwise I will make things worse when the time comes… but where do I start?
My employer and colleagues know, close friends as well and some family members also.
Insurance sorted…
What next…… ?
Sorry for the slightly disjointed post, I am not used to having to formulate such things and putting things in an orderly manner is not necessarily my strongest point… You might see a lot of bullet points in my posts 🙂
Anyway, I am out there now which is something I have been wanting to do for a while but somehow was feeling guilty about it. I suppose it comes down to that guilty feeling of thinking I rather than we. I suppose I also feel a little out of place in comparison to others here as we are not yet in treatment.
Thanks and Happy New Year to you all.
Ed
Hi Ed,
Thank you for your open and honest post.
I am sorry that you have had the need to find us but given your circumstances I am glad that you have. The information highway has a lot of wrong turns and confusing roundabouts… this site and this forum should supply you with all that you need regarding information and empathetic experience.
For now I am just going to say hello and welcome… I am well down the road as a Myeloma patient… you have posted to the carer's section and most of your current queries are carer-centric and we have some excellent carer's here who are a mainstay of this forum. One of them will be along soon to add their welcome and perspective.
Regards to you, your wife (?) and child (?).
Dai.
Dear Ed
I am so sorry that you have had to join our exclusive club but you are very welcome. You will meet terrific people here who are a mind of information. My hubby has MM he was diagnosed Sept 2006 and like your wife they are monitoring him. the only treatment that he has had is Someta. he has good days and bad days – and I will be honest I worry about him all the time. I went to a counsellor (recommended my Macmillan) and they were terrific – I could rant, cry and there was no judgement just support. In the nearly 6 years I have been to two sessions. It may not be for everyone but I helped me greatly. our children are grown up and that was difficult to tell them. We have grand children and Frank took th decision – as he was not on treatment – not to tell them until treatment starts. Ed we try to live life to the full. Dai is so right -dont surf the net – I did before I found this site and what I read scared the living c**p out of me. I cannot help with your other points but you will get some of your new cyber friends who have been where you are and be able to help you both.
My very best wishes to your wife and take care.
I hope you and your family have a great happy new year
Love Jean x
Dear Ed
Welcome to this site – know other carers will give you the support you need, but hope you can find some nearer home too.
I am now in the "wait and see" plus Zometa phase and take comfort with every consutation where this continues. I take heart that there are lots of folks out there for whom this phase lasts for years. I remember another member, Tom, saying how difficult it is with this diagnosis hanging over you, and of course this is so, but one good outcome is that it does make you value each day you do have.
Because you are both young there will be specific difficulties to face, but there are lots of younger folk on the site who will only be too willing to share with you both.
God bless all the family in 2012.
Mavis x
Hi Everyone,
Thank you very much for your messages. I am glad I posted here as a first step.
Our first new year since the diagnosis and it was a tough one to celebrate, but it was so good being together.
I think we have to learn to live for today more as it is not something that we have really been doing.
I think the idea of counselling is a good one. I have never been to anything like that so I have no idea how I would find it. As long as I do not get committed! 😀
Next appointment is in a few days… :-S and I keep my fingers crossed, touch wood, etc.
Once again thank you all, it is nice to feel other's presence although it is not something you wish on anyone.
Take care,
Ed
Hi Ed
Hope you had a nice new year and that 2012 wil lbe better for your wife, you and your family. If you are interested in seeing a counsellor ask at the clinic or the Macmillan nurses. As I said may not be for everyone but with the help of people on the forum and the counsellor -I was pulled out of a dark place, and it is reassuring to know that they are just at the end of the phone if I need them
Best wishes you
Love Jean x
Dear Ed
I too am on the patient side of this select group. It is a hard road for you carers to travel with us but I can only reiterate what others have said, here is a place where you find support even if you only read about others experiences.
When I first found myself coming to terms with the disease I visualised myself in a small boat in a big sea, towing a large boat with my friends and family in it, all trying to help but no where near me, …. now I know that there are many of us out there all towing our boats and paddling furiously but we know we are not alone and someone always has a reply, even if it's just to bolster you up on a bad day.
Wishing you hope and courage
Helen
Hi Ed,
I am a carer too and my husband Steve has MM. He was diagnosed in 2004 when he was 48 but the disease did not become active until 2010. His paraproteins rose very slowly over that time and we were able to put it to the back of our minds and live our lives during that time. When it started to make itself felt in early 2010 we were very shocked. We both went to see specialist oncology consellors that we were referred to by his consultant and we both found it hugely helpful. If you cant get a referral then I am sure you would find the macmillan nurse really helpful as jean suggests.
Good luck to you both,
Much love
Mari
Hi Ed
Im a carer to my wife who was diagnosed in 2008 at the age of 53, and I'll give you my spin on life with MM. It may be helpful if I say that at dignosis my wife was in hospital and unable to walk, it was obviously serious but we didnt know how serious. When a lady doctor came to give us the dignosis she simply said "you have MM, make no plans, think only of yourself, I will send a psychiatrist to see you". This obviously terrified the life out of both of us, but looking back we can laugh about it now as the thoughtless words from a doctor who really didnt understand MM. (We found out much later she wasn't a haematologist.) Luckily on trawling the internet I found MMUK, and their help and advice was so valuable in those early frightening days. They were able to talk to us about MM and make it very clear that whilst it is currently incurable it is most certainly treatable.
So over three years later she is in full remission, under the care of a great hospital and medical team, and we know that when relapse occurs then we shall move on to a new treatment, and that new treatments are being worked on all the time.
What advice would I offer you? You mention counselling, well give it a try, as if it helps you then its a good thing. I have no idea what hospital you are at, but in your shoes I would seek the best medical team you can find. That of course may mean some travelling, but MM is a very individual disease, and as such a haematology department who have huge experience of MM would for me be the best option. ( The other aspect of that is you would meet along the way other MM patients, all of which will make it less of a frightening world.)
The carers role is a difficult one, ( but very different from the patient), and I guess every carer thinks differently. For me I try to sympathise, encourage, be strong as much as I can. Equally there times when you need to be tough with your patient, MM can become all consuming and "take over" your life. ( We solved that by taking on a building project, but I certainly would encourage you to do something together that takes you away from MM.)
You say you live in Hampshire, which is an area I know well. If it helps, and you would like any more advice message me privately. will happily do what I can to help.
cheers
Stuart
Hi edd
I'm very new to this site, have made a couple of post myself. My toughest times so far is having to remain strong and in control. And leave the break downs and screaming for my husband who without a doubt has held me up. My dad was diagnosed in august of this year, after suffering back and rib pain for over a year. I agree with live each day as it comes. It eventful journey and I've been very lucky that my company have allowed me to have a very flexible approach to my working week. Some weeks im lucky to do 12 hours, others I do manage to make a nearly full week. With support from my husband who helps with care. Live life to the max and make sure you remember to take care of you as well.
Love to you and your wife
Nicola
Hi Everyone,
First and Foremost, thank you so so much for all your messages and sorry for the long silence.
We have had some positive news on our last visit to the oncology dept.
My wife who has now been under their care for about 9 months is showing signs that there might be a chance that her case is steady although they say no guarantees.
It is a huge relief to be able to think in months rather than weeks. We are keeping the appoitments regular but it is likely should things remain unchanged for them to be more spread out. We will have to get used to that but it can only be positive…
The situation I know is unchanged, but it seems to give us a bit more time to see it coming.
Once again thank you very much!
Ed
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