Taste and tiredness

Hi Phil.

Getting a myeloma diagnosis is one hell of a shock. I "grieved" for the life that I had had. I got over it though, so it can get easier.

You mention two specifics:

- Fatigue. This is normal and frankly something that patients have to cope with. Try to get stuff done when you have a bit of energy, ask for help from any family or friends, have a daytime nap if you need one (I did almost every day when on full treatment).

It isn't forever. I, too, was very active before diagnosis. As soon as I went into remission, the fatigue slowly started to reduce week by week. I am now back to cycling, lifting weights (I got approval from my consultant as weightlifting with myeloma can cause fractures) and walking. If you try to exercise during treatment as best you can - yes I know that can be damned tough because I have been there! - it is very beneficial.

- Food and taste. That happened to me too. Some people find that food tastes "metallic": cutlery made out of something else (wood? bamboo?) can help a little there. My appetite greatly reduced. The main thing that I could still eat was dairy: yoghurt, ice cream etc. If you are not eating much, it can obviously cause your weight to plummet. I lost 16kg! It may be worth keeping an eye on that. You can be prescribed high calorie milkshakes to help.

Keep plugging away. It's tough, but it's worthwhile. I have been in remission for years now and am enjoying life - and food!

Hi. PhilRd   Kevin here.  A. K. A. Vespa.  Make 69. 2.5 years  post stem cell transplant.       The shock to you and family is awful.       I am not a  “. Why me” sort of person just tackled it the best I could.     Fatigue.   Is still hard but compared the treatment phase.  A lot better.      Rest when your body is telling you to.     Taste loss in treatment like Chicken2  was hard as I love my food so much and weight loss is not great      I lost a lot of weight and loved ice creams.  Mints    Milk shakes. Protein shakes.    And just smaller portions more often.        Want to end positive vibes.   The journey is worth it.      New life is great     Best wishes my friend.  Kevin.  

Hi and welcome to our Forum

I feel that Chicken2 has offered excellent advice and agree with Vespa that the journey is worth it. 

I am in my mid 70s and feel that I went from a fit and energetic woman, totally symptom free, to a frail old lady!

I am 6 months into treatment and have experienced virtually every side effect from every drug. As others say, however, it does get easier and it is worth it. 

When I see the results from my monthly blood tests and receive messages from my consultant e.g. “excellent disease control” it motivates me to keep going. 

You will adapt and you will have better days. 

One day you WILL look back and see how much you have achieved  

Hang in there. 
Jo

I’m a bit similar to you. The tasting there’s not an easy answer but experiment with foods that you may not have liked before

Hi Vespa - many thanks for that encouragement and insight. Ice cream is a go to and soups mainly both of which I can taste. I think you are right about resting but I can't help comparing my sedentary lifestyle with a very active one 6 months ago. If I thought I'd get back to that then the treatment journey is definitely worth it. I think things are slightly more awkward because I live on my own after splitting from a long-term partner 2 years ago so I have to prepare things, go shopping etc and there's no-one close to chivvy you along. But if the 'new life' awaits it will be worth it. Take care and thanks for your response.