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hi all. I was wondering if anyone had any advice about how to approach eating, drinking, stress etc…as a smoulderer? My docs and consultant basically say “look after yourself” but what do they really mean? How much exercise should I do? My nurse said “don’t play rugby or go skiing”. I don’t play rugby but I do go skiing every year, so do I give up? What should I eat (and what shouldn’t I eat)? Should I cut out alcohol? And what about stress? I have a very busy and stressful job, and am not good at coping with stress anyway…should I change my life dramatically? I’m just pretty confused about everything a few weeks on from diagnosis! Any help much appreciated.
mark
Hi
I’m sure the consultant has told you to drink plenty of water, this seems to have really helped my wife. It’s hard to get used to drinking 2/3 litres a day, and initially my wife could never remember how much she had drunk by the end of the day. So she started filling a jug every morning and pouring from it during the day, this made it much easier to keep track. There is a clear side effect of drinking plenty of water, trips out have to be planned around loo stops! We also bought a supply of had gels and have them in the car and in various handbags etc.
In terms of diet then Edel hasn’t really changed that much since she was diagnosed (almost two years ago). In terms of exercise, she would walk regularly, which is enough, it also keeps the mind healthy!
In relation to your lifestyle change, this is really a personal choice based on your own circumstances, the only thing I would say is not to rush into anything, wait until your head is a bit clearer, there is just so much to take in at the start.
In terms of skiing I can see where the nurse is coming from, as there is a clear danger of falling and bone damage (well for me anyway!). Remember you will be meeting your doctor every couple of months for check ups and will be able to ask questions as things arise. We’ve booked several holidays since Edel was diagnosed but only after an appointment when she was given the all clear again, and ensuring the doctor was ok with it (never been an issue).
The forum and staff at Myeloma are also really helpful.
Finally I would really recommend to go along to a Myeloma info day. Edel was reluctant to do this last year, as she was concerned she would be overwhelmed by it all. However she found it really useful to talk to other patients and the Myeloma staff.
Take care
Hi Mark, My advice would be to do what you feel is good/works for you. Skiing is fine if you don’t have bone damage – they are over cautious on no contact sports, high impact (which includes tennis) etc but if you have no signs of bone damage – do it – if you develop bone damage weigh up the risks when you know the extent of it etc. The medical profession will always be over cautious with one advice fits all – but we all know it doesn’t. I have not changed my diet etc on the basis I was a very fit, healthy lifestyle individual who got this disease so why change now? – yes if you are overweight and have a rubbish diet make sensible choices to try to do better but I find that this is not the case for many. Alcohol? well weigh up having a sociaL relaxed drink against feeling stressed/isolated. I have cut alcohol down to a couple of wines a week but that is purely because my kidneys are impaired and when in chemo I stopped and I guess I just got out of the habit but if I want a few then I will – it’s my life not my myelomas life! Make changes that if you wanted to be a healthier individual you would make anyway – that is the sensible approach. Stress is known as a factor for cancer and that is one area I try to minimise – look for coping strategies, interests and outlets that help you cope – this won’t go away so you need to learn to live well with it (time is obviously a major factor in achieving this but actively seeking remedies will help). Should you change your life dramatically? only if you are unhappy with it, however, let’s face it this is a massive wake up call so if there are elements of your life/job you are unhappy with then I would say look to changing these aspects (if possible) so life is more fulfilling, positive and happy which will impact on any negativity and stress also. If I was a smoulderer the one think I would do is start taking circumin supplements – and if you look at the threads you will find a wealth of information about this supplement which appears to have a lot of benefit – of course you will never know if it did benefit you or not but I think just being pro-active in this direction may make you feel like you are doing something positive and, therefore, worth it. Whilst you are grappling with all this please remember your partner in all this and perhaps look to seek out positive changes together. You have a long road ahead of you so plenty of time to find your feet and explore what works for you – this is your race and run it however you feel appropriate.
Rebecca
Hi Mark
One of the best stress management books I have read is The Chimp Paradox. You can dip in & out of it but I have really enjoyed it as well as finding it useful. Mindfulness techniques have helped me too .
I’m a smoulderer who takes curcumin ( plus some other supplements.) As Rebecca astutely says, I like the idea I’m being proactive. My last two pp readings have been down on diagnosis which may well be a coincidence but to be honest if it’s down, I ‘m happy- regardless!….
C x
Thank you so much for your responses. I’ve shared them with my wife as well. Incredibly helpful and one of the great things about this is the way people are so willing to share their thoughts and experiences to help others – and it really does help. Thank you so much.
<p style=”text-align: left;”>Hi Cygnet</p>
<p style=”text-align: left;”>Would you kind sharing what Curcumin supplements you take , the dosage and where you get them from?</p>
<p style=”text-align: left;”>thanks jane</p>
<p style=”text-align: left;”></p>
Hi Jane
I take 1 x 10,000mg tablet of Nature’s Best Turmeric ( Kent based company) per day. I initially started on a half dose ( I simply cut the tablets in half ) as I read too much if you’re not used to it could upset your stomach.
I have bought various supplements from Nature’s Best for years so after researching the internet to see what some people believe can help smouldering myeloma/mgus I chose to buy from them again. I also take a high strength multivit, fish oil, & quercetin. I used to suffer alot with nerve pain/zingy pins & needles but ( touch wood!) the supplements seem to have helped with that too. For me it is preferable at this time to the prescription drugs I was offered by the neurologist & my lovely gp. I also take their immune strengthening juice Berryguard as I had pneumonia last year & would rather not have it again!!
I also eat a healthy diet as much as I can ( but I’m no saint!!)
I hope this helps
Cxx
hi mark ,
I went skiing for about 6 years whist smouldering but had mris and dexascans and the opinion of osteoporosis expert to confirm my risks were minimal and my insurance excluded myeloma . I also played tennis until my myeloma kicked off when i stopped but continue to play golf which surprisingly is seen as an impact sport ??? As far as i know i have no bone lesions (pet scan ) but had lots of steroids and zometa to counter balance them . Providing i stay in remission i will repeat scans and then reassess risk of tennis and skiing and travel insurance costs. Hopefully you will smoulder for ever but regular scans despite what Nice recommmends are reassuring .
and in my opinion esssential in any case as silent bone lesions seem to be detected in studies of patients thought to have smouldering myeloma and 2 lesion equals active myeloma and the need for treatment.YES there are risks ;it is quantifying them and then making decisions accordingly .
mike
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