[amandajeatonParticipant]

Hi all
I am carer, along with my sister (although don't like that term, much prefer supporter or helper) for my Mum who was diagnosed last November (2009).
At the moment she does not require any treatment, which I know is really good. However I am struggling to come to the terms with the fact that she has this curable disease yet does not need anything to help. I realise this probably sounds rather silly and I am glad it's this way, just part of me feels if were having treatment I would have to face it and deal with the disease.

Has anyone else felt like this? How long before you needed treatment?
Thanks
Amanda

[tomParticipant]

Hi Amanda, and sister

Sorry you have to join this band of MM'ers, but to be honest they are a great bunch of folks.

I have MM and was told in Jan 2009 and started CTD in Feb leading up to a succefull Stem Cell Transplan and Yes am with you Re the Carer? it aint for me, dont know what I would choose?.

And as for the "Lack" of treatment yes I always found it strange when I wasn't on treatment am pleased it aint just me Lol, I have always felt if am taking pills having an infusion of sorts I am fighting it 😀

You and you Family will get all the help and advice from some great people on here.

Love from one "Onwards and Upwards" Tom xx

[DebsParticipant]

Hi Amanda

Welcome on board to you, and your sister and mum if they choose to use the site too. It is definitely a fantastic source of information and support, and I for one, have stopped looking elsewhere for answers as it is always out of date!

I presume that your mum has been diagnosed with assymptomatic myeloma if she doesn't yet need treatment? That was what I was diagnosed with in July 09 and I started treatment in November. But please don't think that that would mean your mum will. She quite possibly won't need it for much longer. The thing with MM is that it is so individual….there are people who are assymptomatic for 10+ years, so you just have to listen to what her consultant is saying about things like her kidney function, her hb and her calcium, as well of course, as the all important paraprotein or lightchains.

I know what you mean about sort of wanting to start treatment – I felt the same way. Funnily, now I look back and wish I had just enjoyed the time where I wasn't on drugs etc. I think at the time I thought I would be more in control once I started treatment, but I'm not sure that actually changes. But it is easy to say not to wish time away, and much harder to do!!!

One thing I would say, is that I think what it allowed me to do was to get to grips with the cancer, and to understand it better so that it wasn't so difficult once the treatment began. It is something that I feel very lucky about having heard so many people on here who have to deal with a diagnosis and starting treatment immediately – then they have to deal with the psychological side of it and the physical side effects of the treatment together which is much harder.

Anyway, sorry for the long waffle!

Take care
Debs

[brochoParticipant]

Hi Amanda just want to add my welcome to you and your sister , and your mum too of course . I think its brilliant that you and your sister are keen to support your mum ,( I dont like the word carer either!), and I bet she is as proud as punh of both of you . I think Debs made a good point about this time without treatment will give you all time to adjust and get your head around the cancer issue too . Try and take each day as it comes If you fill your head with a lot of information at this stage it will be very confusing , its not until you actually start treatment that it makes sense Having said that there are lots of us on here to answer any questions you might have or support you if you need us .I hope its a very long time before your mum needs treatment , please pass on my best wishes Bridget

[MinParticipant]

HI and welcome too,
I think the longer your Mum can put off treatment the better for her, the medication for this condition can be quite toxic and the side effects are not always good. But everyone is different
If your mum is fit and well, and enjoying life then putting off medication is the best thing.
Because once she is on the treadmill of treatment for her condition it cannot be predicted how she will respond to it; she may find that getting herself fit and strong enough to cope with what can be a strenuous course of treatment, will make her better able to cope with it when it does start.
A large percentage of MM sufferers do not get diagnosed soon and are usually run down by the time treatment is started. I hope it is a very long time for her before she has to commence any kind of treatment so she can enjoy her life without the constraints of catching infections whilst on medication.
Good Luck to you all
Min

[jmsmythParticipant]

Hi Amanda

My welcome also to the site. The site and the lovlely people
on it has seen me through ddifficult times. My husband was diagnosed with Smoulderig Myeloma in September 2006. I really did not understand whY they did not start treatment right away. The only thing they give Frank was was Zometa for about 6 months. But he has great faith in his consultant and for the past 4 and a bit years we have tried to live a normal a life as possble. We go on holidays and I have to say we enjoy life. We see consultant every two months. I really understand how you are feeling as I went through exactly the same thing – I wanted sOmeone to do something and DO IT NOW. I also hate the word CARER. I wish your mum many years of being reatment free and my very best wishes to you an your sister.
Lov eJean xx

[RozParticipant]

Hi Amanda

Welcome to the crazy gang…Well its the gang who stop the carers going crazy any way. I think it is good that your mum has been diagnosed before any treatment has started. That way the medical team will be keeping an eye on all developments. My husband was ill for over a year, he then got so serious that a ambulance was sent to rush him into hospital. After that tests started. So in my eyes my husband got diagnosed too late. He may be still here if things were different, no one knows! So Amanda remember it is good to know so you can be prepared in a fashion for when treatment my start.

All the best to you, your mum and your sister
Roz

[JetParticipant]

Hi Amanda

In response to your concerns, I would say, like everyone above, that this condition is so individual, no one will have the same experience as your mum, but I thought I'd add my own experience as a counter to your mum's. I'll leave it to you to decide which you prefer. But I do understand your sense of impotence. Like others, I would also say enjoy it while you can. The treatment has a lot of side-effects which are not necessarily pleasant.

I was diagnosed in Feb this year. I was in hospital due to dangerously high calcium levels causing a high level of kidney failure, so was already having treatment. I had a CT scan on Weds, then a bone marrow biopsy on the Fri. Two hours later they came to give me the diagnosis of MM and within a couple of hours, I was given 40mg of Dexamethasone, very powerful steroids. I was warned that "they might make me a little hyper"… OMG! I was bouncing off the walls… AND trying to deal with the diagnosis! The steroids made me insomniac, so I was bouncing around a sleepy hospital ward in the early hours with no one to speak to and all this crazy stuff going on in my head. The next day I had two visitors who couldn't get a word in edgewise as I couldn't stop talking. It was all very weird, but maybe protected me from sinking into immediate depression…? Who knows?

By the way, while MM is considered "incurable" but treatable, you could say the same about LIFE! A friend of mine's mother is in her eighth year of remission following a stem cell transplant, which gives me, and I hope you and your sister and mother, great hope.

Jet

[amandajeatonParticipant]

Thanks to you all, I am sure somehow we'll get used to the MM over time, and the routine visits to consultant will all become part of normal life.
I know that everything is best while no treatment is needed, and that I have to deal with my thoughs and logic.
Does anyone know if there are any counsellling services offered to family members?

I went to info day on Saturday, was good, but think scared me more. Made me realise just how bad the treatments can be. My mum is 72 and guess I am thinking that she'll only have 5-7 years, as know stem cell transplant not an option.
Oh well onwards and upwards, one day at a time

[jmsmythParticipant]

Hi Amanda

Here in Belfast counselling is available, it was arranged through the Cancer Resource Center. I went to counselling when Frank was first diagnosed. I went for about 6 months and it really helped me. I had to go back again to see the counsellor iddle of last year afor about 2 months. Declan (the consellor was brilliant) and the door has been left open for me if I want to go and see him again.

I hope things go well for your mum and it is so important that you look after yourself.

Take care
Jean xx

[GillParticipant]

Hi Amanda

I think it is great that your mum does not need treatment yet. My husband was diagnosed in 2008 and was treated straight away because his mm was so virulent (sp?).

He is still here. He is 55 and is hoping that he gets "another year" 5 to 7 years would be wonderful for us

For every day we get I am grateful to some god or other and this from a heathen:-)

Stephen is so affected by the "bone rot" that mm brings that when he can get out of bed within 20 minutes of waking, geting coffee, cereal (oops I must be the idiot here. I SERVE BREAKFAST IN BED???) he walks the dogs. He comes back almost mobile but exhausted and faces the day.

I am not a carer just someone who married an idiot:-( that got ill. How dare he

[amandajeatonParticipant]

Thanks Jean… think I will contact Mum's specialst nurse at the hospital ~(Doncaster, South Yorkshire) to find out if any available. Am sure it will help me deal with it as most of the time I seem to ignore the fact.

All feeling more raw at moment then when first diagnosed (last Nov 2009),but think that because of the infoday saturday, so making me face up to it.

I know I have to look after me too, I have 7 year old and 21 mth old twins that keep me extremely busy!

Hope all still going well with your husband too xx

[RozParticipant]

Hi Amanda

I live in Doncaster, so just being nosey wondered where about you lived?
Michael was under Doncaster at first but as time went on he went to Sheffield. No disrespect to your mums specialist but we got more help and understanding at Sheffield, so we stayed there.

I hope you get all the help and support you need so you don't move like we did.
All the best
Roz

[jmsmythParticipant]

Hi Gill

I hope Sephen gets many many more years. I really admire your attitude to this bl**dy awful disease – I wish I could be more like you. Take care and may your God bless you.

Love Jean xx

[zasrsParticipant]

Hi Gill

I don,t do breakfast in bed cause so much i do is wrong! It is so tricky being a 'carer' i guess it is what we sign up to with our marrige vows, many years ago now, i also feel the idiot who married the pain that got ill!!

with best wishes sarah

[Author]

Posts