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I feel bad writing this because I know that for many their situation will be more grave. My husband was diagnosed around a year ago age 49. Asymptomatic smoldering myeloma. He has just finished a year of dexamethasone and now is on revlemid for suppression. His blood results are good. He is well….. but not well – does anyone else understand that confusion? His main symptom is fatigue. He keeps going for work, friends, family etc but collapses at home. I feel like our relationship is disappearing. It would be great to hear from anyone who has experienced the same
Fatigue comes from the Dexy. It is one of those things that cannot be helped. Unfortunatetly that is the way it is. The thing is both of you need to reassess what can be done and what can’t and then readjust your lives accordingly. Life will never be the same again, it takes time to adjust to the change. Expecting things to be how they were will just lead to dissapointment for both of you.
Thank you so much for replying – I know that you are right when you say things can’t be the same, and equally true that the adjustment takes time. You say it with kindness though, thank you. We both realised the dexamethasone days were BAD, but I think i assumed things would be significantly better when the steroids were stopped – it is 3/12 off dexamethasone now but no real improvement. I think the revlemid and the myeloma itself contribute to his fatigue….
Hi, I was diagnosed just before my 51st birthday and did the chemo/SCt and now in remission and drug free. My personal opinion only – what got me through it all was being adamant it would not impact on my life anymore than it had to so I continued with the gym/sporting activities throughout all treatment and as soon after SCT as possible. Having MM can really drag you down mentally and perhaps make you always bordering on depression but I found exercise really lifted me up and kept me going. It would have been easy after a day at work to flop on the settee all night as I felt so tired but I dragged myself to the gym and honestly after a bit of exercise and a swim I felt totally invigorated/uplifted and able to do things for the rest of the might as tho I was refreshed. When I went to bed however the moment my head touched the pillow I was asleep. I believe chemo and working can really drag you down physically and mentally and I would suggest reducing hours to obtain a better QOL – which I have done. I played in tennis matches throughout chemo and after 2 months off chemo when I was less tired etc it felt as tho I had been playing with a veil over me and feet in quick sand – I had not realised how hard (compared to normal) it had been for me – but it kept my life normal and better. It is very easy to give in to fatigue but you will find lots of people on the Us site who say no matter how tired they are they force themselves to do a 2-3 mile walk and feel so much better after it – I am sure much of that is mentally uplifting. You are both far too young for this to impact so much on your QOL so I would suggest you need to evaluate what you want to achieve and try different strategies to do it – reducing hours would help – trying something different perhaps which involves some exercise may be an option. My husband – who believes exercise cures all – really pushed me throughout from the onset to maintain/increase exercise and I think he was right as I felt my life QOL was good with it. Why not try a nice long walk in the countryside or a walk after work – regardless of felling tired – and see if it helps? Sometimes I think MM screws with your head so much that perhaps long term fatigue is also caused through depression/low mood and because MM is associated with fatigue it is very easy to “label” everything as MM related when a change in lifestyle/strategy/outlook can flip the coin somewhat. I do not mean to be disrespectful to those who do feel fatigue – I have had it myself – but if there is no bone involvement and you can exercise and get about then you must. Life is too short to be bogged down just going through the motions so now is the time to get proactive, try new things and drag him along with you – you may find it is just what he needs to reinvigorate himself/life. After my SCT I was very ill and thought I could not play tennis again – my husband dragged me down and I struggled so much the coach gave me a soft ball (used for under 6’s!) to hit and when I tried to run for a ball my mind was there but my body was way behind – like a 90 year old playing tennis. I was so upset that I couldn’t do it but he insisted we go each day just for 5 – 10 minutes of hardly hitting/moving and then it increased as I got better/used to it and after 3 months I was more or less back to normal. it would have been so easy for me to pack it in without hubby pushing me – he needed me to be back to normal for his QOL also. You have to fight hard for your QOL and that might mean a change in work/life balance to accommodate it. The more you do the easier it is with MM – people say listen to your body and rest (well yes to a point) but your husband is young and should be strong as he hasn’t had any severe drugs as yet so you must go for it – I never limit myself because I have MM in fact I probably push myself harder to prove I can do it and am still “normal”. I also found reading and some “mindfulness” classes/techniques have helped enormously. MM is very much a mental and physical challenge and anything you can do to help the mind will help the body also. As a partner I know it is very difficult but don’t treat him with kid gloves – you are fighting for your “life” also – so be positive and challenging – the challenges can also be like treats. Please give it a try and Good luck
Rebecca
Rebecca, thankyou for what you have just written, I’m struggling at the minute with my asympotmatic diagnosis and coming up to my 50th birthday this September, since last Oct when my world turned upside down I have spent a lot of time feeling sorry for myself and more so feeling sorry for my family but this last month or two I have upped my exercises of walking more, taken up swimming again and I do feel better in mental self and the family say I’m mum and wife again…so I do think we have to try and push ourselves to keep a good quality of life.
Hugs Helen
Thanks Helen – I don’t like “preaching” exercise as am aware many have bone complications – I have kidney complications at around 30% but it doesn’t affect how I exercise/live my life – it is just a number and exercise helps. Unfortunately you will always have the sword of damaclese hanging over you and the key is to live well with this – much more of a mental thing when you are so young with young children. During chemo I practised mindfulness and now in remission I still need to live my life with it and like living with mindfulness. We all need to find mental strategies to live well with this. I read a lot and collected a lot of quotes which in various stages helped me – almost as a “mantra”. My favourites which I remind myself regularly of are “worrying does not empty tomorrow of its troubles; it empties today of its strength” and “Worry by its nature it generally about things we don’t have control over and thus a waste of energy and emotion” I try and live by “You can’t control what happens to you but you can control what happens in you” – which I believe sums up mindfulness. “BE miserable or motivate yourself. Whatever has to be done its always your choice”. Always look for strategies to help you that works for you – this is truly a marathon not a sprint. If you like music to exercise to try Gabriella Climi “ON A mission” it is fast paced, up beat and I used it in the gym, walking, on the way to hospital for treatment, when I felt despondent to lift me – it’s really appropriate the sample lyrics “I am a woman on a mission…nothing can stop me, I’m stronger than ever I’m gonna see this through… I am a woman on a mission Whatever it takes I will do what I gotta do..” We are all different but to me a prompt quote reading, motivational song etc was my armour to fight for our QOL – we cannot fight disease biology the real battle is to minimise how it affects our QOL. I am so pleased you have taken up exercise – I am always kind to myself now so do add in to your life regular “treats” for yourself – things you perhaps would not have done pre-diagnosis because you were too bogged down with housework/humdrum of daily living/putting your family needs first. I don’t mean expensive things just say regular catch ups with old friends, coffee, beauty treatment – whatever floats your boat – anything not routine and nice. It uplifts you and as the “heart” of the family everyone takes their cue from your moods etc so in order to minimise the impact on the family we have no option but to find strategies to minimise the impact on ourselves. it is doable but it takes a long time living with it, I feel, to do it well. Don’t waste time worrying about the future as it will come soon enough and you will deal with it then. My worst thing initially was to constantly worry about how my daughter/husband would cope without me – this is true self harm masochism and pointless as I won’t be here to see it anyway. This was so utterly painful for me I can not now think about it and.. why put myself through thinking about things like this? However, I have tried to steer my daughter to be more independent etc and will at some point gear my husband to some more independent social activities so in a sense it is like “turning a basket of worries into a basketful of wishes” (yes another quote!) – you can always turn anything negative into a positive and once you have turned it into a positive you can let it rest there and forget about it. I am not, however, doing this in a morbid way as I believe I have a long future but it is something that would be useful/beneficial to all so why not do it? – tyoe of thing. I hope you have a fab 50th – splash out and enjoy it – I was quite age conscious and didn’t do anything for my birthday and when I was diagnosed a few weeks before my 51st I totally regretted it and like to celebrate anything at all in life now – particularly birthdays – so enjoy this. Sorry for rambling on but I really think it is so important for us to develop effective coping strategies we can adopt as a way of living – to the point that they are not strategies but just how you now choose to think/live. Best wishes
Rebecca
Rebecca
Hi
just a quick post – hubby has been on dex and rev for a year now, back in remission, but staying on for maintenance and suppression purposes- (diagnosed 3 1/2 years ago).
he gets tireder each cycle – saves his energy for what he wants to do, so doesn’t do much excercise – particularly as he got a lot of bone damage.
Our doctor says it’s definitely the rev making him tired – that and the lack of sleep when he’s on the dex.
nothing is the same any more, but there are silver linings to each and every cloud, you just have to look a bit harder to find them. I told hubby he had a pass to do whatever he wanted – he decided he wanted to be home with the family full time – so that is what he does. he stopped work, and now looks after the house. it’s different, and not what we planned for, but it’s still a good life.
he’s 50 in october.
Itis difficult to live with the knowledge of your life threatened by this lousy form of cancer. i try to use and practise mindfulness Rebecca is correct andI thank her for her splendid posting.Does your husband take any anti depressant therapy? Id,I take Sertraline 100mg.daily and that helped me to stop being so anxious andvery reluctant to socialise, low in mood. I had been sitting ruminating about my past and all the mistakes I had made. Negativity was my middle name.Now I go out with my Primary school girl group approx.12 of us ,we have been friends for 65 years.Some travel35 miles to cometo Glasgow using their Free Bus Pas and we have lunch and an outing eachyear e.g.London to see a show etc. and The Tower of london remembrance Poppies and I felt so excited to be seated at the jersey Boys show,in October its the Races at Kelso in the Scottish Borders. I thought I would not see the Scottish Referendum and so upset that No did not win and the General Election was a great dis appoint ment to me 56SNPseats and the feeling of nobody representing me at westminster.
Hope I have not ranted on too much.Go for it.I only saw the posting today Regards Liz Moore
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