Dear Mike,
Thank you for your response- I’m hanging onto the Mayo Clinic’s 2007 results! We look for any ray of hope, don’t we? You say that you’ve been smouldering for 6 years which sounds pretty good -have you adapted your diet or taken supplements or done anything to maintain this? In 6 years time, my daughter will be seventeen and my son…[Read more]

I’m with you all on the pre-appointment anxiety. I’m also putting my poor mum, sister and husband through sleepless nights and worry when it comes to ‘that’ time. Rather irrationally, I find myself demonising the consultant by thinking ‘I wonder what that bloody woman will come out with.’

Robert – I’m with you on the supplement thing. It’s just…[Read more]

Hi Michael,
Just wanted to tell you that your post made me (a smoulderer) feel positive and uplifted. I’ve just finished reading a very sad but beautiful and realistic fictional novel about young cancer victims entitled ‘The Fault in Our Stars’ by John Green- which left me feeling low- so you provided a good dose of hope – thank you. I was…[Read more]

As a black woman, I’m probably not best qualified to advised but friends tell me that there are good tinted moisturisers out there- could be a safer option?
I find that I always look hearty and well because of my colouring which means that I get little sympathy when I feel rotten! (LOl)

Thanks Megan, I’m relieved to here that Tom is okay-I’ve been thinking of him too.x

So sorry that you have had to join our gang but keep positive – there are people out there who’ve been battling for over 10 years. Live, love and talk. It will be tough to come to terms with but in time, you will all reach calm acceptance.x

Hi Tony,

I read the article and as far as I understand, green tea only needs to b.e avoided if the myeloma is active and treatment is being received. There is no harm in drinking it if you are smouldering- indeed, there could be a lot of good since the Japanese study found that it kills myeloma cells

Hi Dawn,

I do feel tired at times but as a working mum, I’ve felt tired since my kids were born. I find it hard to know if it’s the myeloma causing me tiredness or simply the pace of life! Your life sounds busy too so it is hard to know for certain, isn’t it?

Living in 8 or 16 week blocks is so cruel, isn’t it? Just before the appointment, I…[Read more]

Hi Rhiannon, I think that I know how your dad feels- he’s probably desperate for you to lead a normal life and to be as carefree and lighthearted as any other eighteen year old. I’m mum of an eleven and eight year old with smouldering myeloma and i can’t bear the thought of ever telling them because i’m scared of the burden that they will have to…[Read more]

Hi Brian,

I have now been smouldering for a year and like you when I was first diagnosed I was searching to take control and feel that I am doing something positive to help myself. I’m under ‘Watch and Wait’ just like you – my next appointment is on Monday. I was 40 when I was diagnosed. Every 4 months I see my consultant and around this time the…[Read more]

Hi Karen,

The ‘not knowing when’ is indeed the hardest thing about our smouldering condition. Whilst most people have a degree of sensitivity and empathy, we also have to encounter those such as your gastro-doctor who fail to exercise tact! Sometimes, it’s almost as if some people want to see us as being different i.e this has happened to us but…[Read more]

Hi Tony,

You’re quite right – you shouldn’t drink green tea if you are having treatment. At the moment, I’m smouldering and under ‘watch and wait’ so am not being treated.

Hi, haven’t heard of this supplement but I do take aloe vera and selenium and drink green tea. (I’m smouldering at the moment). As far as I’m concerned, if supplements are not doing any harm, what is there to lose by taking them? It just feels as if you can grasp a bit of control by trying to do something.x

Hi, so sorry to hear that you are in pain. I have smouldering mm and was diagnosed in Oct 13. I experience odd twinges of pain but I’m never sure if it’s myeloma or general aches and pains.My rule of thumb is that if the pain passes after a couple of days, I’ll try not to worry about it. If the pain persists for longer, and I have not done…[Read more]

Hi Nikki,

The statistics are dire but in my view, this is due to 2 things. The first thing is that myeloma is hard to diagnose so a lot of people are probably diagnosed when the disease is very advanced. My diagnosis was purely accidental (routine blood test) and I’m pretty certain that as a busy working mum, I would not have discovered this…[Read more]

Hi Nikki,

I know how you feel! I was diagnosed with asymptomatic myeloma 9 monthe ago at the age of 40 and I’m still waiting for someone to wake me up and tell me that it is a nightmare. I continue with my normal life but I carry a burden which ties the pit of my stomach into knots. I can function normally- laugh, have fun etc – but reality…[Read more]

Hi KP,

I just wanted to say that I know exactly how you feel. I was diagnosed with Asymptomatic MM 8 months ago and I still haven’t fully accepted the diagnosis. I see my consultant every 4 months and this sounds pathetic but I actually dress up and put make up on to prove that she can’t possibly be right because I’m so ‘normal’ healthy and well…[Read more]

Hi Jane,

So glad that you’re here and have responded to treatment. Your story gives me incredible hope. Enjoy the biggest glass of champagne ever at the wedding.xx

Hi Sarah,

Wishing u and your husband strength and comfort during this difficult time. Sounds like everything is being done to prepare for his homecoming – well done u. I’m not too badly off really Sarah – I just get my ‘down’ days when I feel full of self-pity but I’ve a lot to be thankful for. My two beautiful children are my light, my hope. I’m…[Read more]