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 always feel vulnerable and fragile.
Aloe vera tastes vile but like you said, I’ll try anything – I’d probably drink my own pee if someone said that it could kill myeloma cells! What’s encouraging is that I read in the recent myeloma uk mag that a japanese study has found that green t (if you’re not receiving treatment) kills myeloma cells.
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 carry. I just want them to lead normal lives and to be free and happy and to spend their childhood laughing and enjoying the innocence of youth. I feel terribly guilty because I will inflict pain and suffering on them and the thought of this breaks my heart. Having myeloma makes me feel like a bad mother – my children don’t deserve to have to deal with this. I’m smouldering so I look and feel healthy and as long as this remains the case, I can hide the terrible truth.I’m not afraid of eventually dying but I am afraid of leaving young children to fend for themselves. I want to be there when they choose their options at secondary school. I want to be there when they open their exam results. I don’t want them to stand aside and watch other mums and feel sad. I don’t want them to cry every mother’s day. I want the absolute best for my children and I know that I’ll fail them. I would do anything to avoid leaving them. Every day, I watch them laughing and having fun and I think to myself – laugh hard now, enjoy it while you can.
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 nightmares and anxiety kick in. Overall now, I get on with life and try to create happy moments but underneath, I am quite angry and bitter but also defiant- I defy this thing and carry on with life.
I now take 2 tablespoons of aloe vera daily, one selenium supplement every other day, drink green tea 2 or 3 times daily, have linseed and sunflower seeds every morning -and the truth is I don’t know if it’s making a damn bit of difference but I’m trying. I have 2 young children so I have an obligation to give everything a try.
We must pack up our troubles in our old kit bags and carry on!
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 can’t possibly happen to them and I find myself wanting to say ‘I was just like you. I was fit and healthy and getting on with life so there are no guarantees for any of us.’ I recognise that I’m probably oversensitive but this is my perception nonetheless.
I don’t understand how they can predict the 18 month thing either. They should at least be able to explain how they have reached this conclusion. I feel your worry – but please take comfort in the fact that there are some really effective treatments available out there.
Onwards and upwards – let’s carry on with life!
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 anything to cause myself an injury, then I would investigate by initially phoning the specialist nurse.x
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 disease until it was in its advanced stages. I would have explained any bone pain away to myself – too much bending when doing the weeding, too much lifting etc. I would have normalised fatigue – rushing around too much, stayin up too late. It would have taken ages for me to try to fight to get a GPs appt and a million home remedies would have been tried first- I’m certain that I’m not alone in this. What I’m trying to say is that by the time that people eventually investigate, the disease is probably very advanced. To top it all off, GPs and practice nurses are pretty ignorant about this disease anyway. My practice nurse asked me where my myeloma is.
The second thing is that this is a disease of the elderly so people would have died anyway due to age. I keep reminding myself that we r no different 2 anyone else- there are no guarantees for anybody. We r all mortal. Just a few weeks ago, a 22 year old boy in my neighbourhood tragically crashed his car and died. I’m trying my best 2 focus on life rather than death. I find Tom’s posts particularly uplifting – although I haven’t read them for a while. I’m sorry that u feel depressed at the moment. I too find that I’m never far away from tears and often have to swallow and suppress them.
Great advances in treatment r being made. Years ago diseases such as TB would have killed people – look how far medicine has come. I reckon that we’re only a short way away from a daily tablet which will maintain our condition and allow us to lead a normal life.
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 whacks me in the face and I have to take a sharp intake of breath. I realise that I am lucky to be smouldering but can’t get rid of the feeling that a grenade is being held over my head. Every twinge suddenly has more significance as I wonder if things are developing. Other stuff still continues- my marriage is not great so I feel as if I’m going through all of this on my own. In fact, sometimes I wonder how my husband can be so callous and insensitive and this really hurts. I feel jealous of those, on this site, who feel loved and supported yet somehow I manage to avoid serious depression. I guess it’s looking at my kids, who are 7 and 10, and thinking about my love for them that makes me put one foot in front of the other each day. It’s a cliche but I guess all any of us can do is take one day at a time and value ourselves.
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 – how sad is that? I think that that’s where the confusion lies – how is it possible to have cancer when you feel so well? I am a reasonably fit 41 year old mother of 2 young children and I keep thinking that I just want to be like everybody else not walking around with this grenade hanging over my head. Recently, I’ve begun to achieve a feeling of inner peace and calm and I suppose that this has happened because I’m taking real joy in feeling healthy and doing simple things – like recently organising an enjoyable first holy communion gathering for my 7 year old son. Sounds a bit corny really but I suppose I’m beginning to appreciate the beauty to be found in every day experiences. The truth is that nobody knows what’s around the corner and we’re no different – the sudden death of Bob Crowe a few months ago really illustrated that. I do get my low points but then reality hits me in the face and I pull myself up again – there’s no point in wasting precious time being anxious while we’re smouldering – this is life at its best for us. I didn’t want to get out of bed the other morning but my kids started demanding breakfast so I had to pull myself up and continue. Cancer doesn’t stop the linen basket from filling up or the grocery shopping from needing to be done.
This website has helped me enormously but I stopped using it a few weeks ago because, to be honest, at times I need to duck my head in the sand and pretend that I’m still non-cancerous me. That’s the thing really, life will never entirely be the same because no matter how hard I laugh or how much I smile, I carry an inner layer of sadness that can never disappear but I’m learning to push it into a deep box in the centre of my soul and to cover it up with fun and love and happy things. You will find the inner peace and calm but it’s a personal quest. I went to counselling sessions for a while but to be honest I had to stop because there were 2 main issues for me- the first was that the room was in the Oncology dept which meant that I had to go there too often. The second was that I got tired of talking about this disease which will always be with me.Talking about it wasn’t going to make it go away. As you can see, I’m still a mass of contradictions!! Anyway, enough of my rambling. Take care.x
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 being far more proactive – I joined a creative writing course and reduced my working week to 3 days – I’m okay really. Wish u well.x
Tom, I wish you well with your treatment and shall pray for you (hope this doesn’t offend, you’ve got to be so careful nowadays). Your positive energy radiates. I like your ‘onwards and upwards’ mentality -thinking of it has made me do 2 things. 1. Reduce my days at work. 2. Join a creative writing course. After all, we only get one life and nobody’s immortal.x
