[HarmonyParticipant]

Hi Ted, Thanks for your response. Apologies for the interrogation- I’m just desperate to know more and do more like most of us smoulderers.

[HarmonyParticipant]

Ted- can I just ask, are you a vegetarian?

[HarmonyParticipant]

So sorry for what you are going through. Sounds like you are having a difficult time. This is a cruel disease which randomly strikes – I have never smoked, am not an excessive drinker, have never taken drugs, have always tried to eat healthily and exercise and I’m 43 years old. I have been smouldering for 2.5 years. I guess we all have to take one day at a time and try our best to keep our chins up. At least they are monitoring you closely.

[HarmonyParticipant]

Hi Ted,

You’re right- we are incredibly lucky so far and long may we continue to be so. I have to admit that I was hoping that you could give me a long list of things to do and take to keep smouldering – I guess we all hope for some kind of miracle. Knowing my luck, I’ll end up poisoning myself with all of the concoctions that I take! At least, I’d die feeling in control! Sorry to hear about your problems with infections – I take selenium with added vitamins a,c and e. It’s meant to boost the immune system. Perhaps this could help you? Holland and Barrett sell it. I spend a lot of time in Holland and Barrett nowadays.

[HarmonyParticipant]

Hi Ted,

Hope things work out for you. when I read that you’ve been smouldering for over 10 years I felt much more positive about my own smouldering state. Just wondering, do you follow a special diet or take any supplements which may have helped you to remain in a smouldering condition? I have been smouldering for nearly 3 years and I’m trying all manner of things.

[HarmonyParticipant]

Hi Mike,
Sounds like you have really been through the mill – evidently, it’s a tough road to travel and inner strength seems to be an absolute necessity. I always get the sense that you ae able to be in control which I think is such a benefit. I hope that when my time comes for treatment, I can be as strong and proactive as you are. Let’s hope that the trial works well for you. I think that it’s great that there are different options to try. It’s good of you to always think of others- I am thinking of you and wishing you remission.

[HarmonyParticipant]

Hi,
It’s interesting to read that you all get your curcumin online. I buy Nature’s Garden turmeric from holland and barrett. Is there any reason why you avoid their one?

[HarmonyParticipant]

Hi Andy, one day at a time… Onwards and upwards (to quote Tom). Sending you cyber love and good wishes-carry on fighting the fight.xx

[HarmonyParticipant]

I think targetted therapy in which each individual case of myeloma is looked at so that patients receive a personally-tailored approach has got to be the answer. It’s logical that if myeloma is such an individual disease, generic treatment will have it’s limitations. The American approach seems to be to look far more closely at the individual case but I suspect cost implications stop this approach from being adopted in the U.K. On a slightly separate note, I went for a run with my 12 year old and forced myself to keep up with her,without warming up a week ago, and felt an immediate pain in my hip. Stupid- I know. I’m now wondering if the ache is still a result of this or has the myeloma become active? This is the ongoing torture of smouldering.

[HarmonyParticipant]

Hi, I’m smouldering and have taken turmeric capsules twice daily for the past year (800mg) because my motto is that if it’s not doing any harm, why not give it a try. Here’s my daily regime):
2 capsules of turmeric,
2 tbsp of aloe vera
3 cups of green tea
small amount of linseed with breakfast
Kale with dinner
selenium every other day.
I’m aware that in reality, this might not be making a damn bit of difference -but it makes me feel good and as if I’m doing something. Have had the disease for over 2 years and have maintained stability – pp levels 20, 21, 22, 23,22, 22.

[HarmonyParticipant]

Oh Graham, I really feel for you. It seems that you have so much to deal with and so much to keep track of all of the time. You don’t need this. You need to feel confident that you can place yourself in the hands of competent medics and your only focus should be on getting well. It’s so unfair that I want to weep for you and weep for myself too, I guess. God look after you, you are in my prayers and I hope that you have a strong support network around you. Human connection is worth more than money and status. I wish you improved health. Take care.x

[HarmonyParticipant]

Very true Graham -I have to remind myself that we are lucky to be aware even though the word ‘lucky’ feels highly inappropriate! A
bit of a double-edged sword really because I’d also like the carefree freedom of not knowing, of being a ‘normal’ once again!

[HarmonyParticipant]

I’m so with you Helen!

[HarmonyParticipant]

As a smouldered, I share your worry. I think that due to the incurable nature of this disease, we all worry about when/if it will strike. I’ve convinced myself that we are just the same as everyone else. After all Cilla Black, Charles Kennedy and Bob Crowe didn’t know that they would meet their ends so soon. There are no guarantees for anyone. Our disease just means that thoughts of illness are more prominent in our minds than others. Rebecca -as a 42 year old with children who still like me to tick them into bed at night and who scream mum every time that they have a tummy ache, I find myself envying elderly people in the myeloma clinic. I still pray to manage to achieve another 10 years at least. Meantime tthe washing, ironing and dusting still eagerly await my attention. Yes, life goes on and I remind myself to feel grateful to be feeling physically healthy and strong.

[HarmonyParticipant]

I think that you’re right to track things closely Graham. We need to empower ourselves so that we can feel some sense of control and not as if we are completely at the mercy of others.This cruel, merciless disease should never take that away from us. Each time I get my pp results, I plot them on a line graph-not quite sure why I’m doing this but I suspect that it is about control.x

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