My husband was diagnosed last October and was receiving treatment up until a month ago. His levels had levelled off and it was felt that a break in his treatment was in order. Since then he seems to be worse. He sleeps most of the time,can hardly walk and is becoming more and more depressed. I am at my wits end and don’t know what to do for the best. Is this normal? Has anyone else experienced this? What can I do?
Hi, Sorry to hear about your dilemma- what are his current levels and what chemo combo was he on? If velcade, which I had, you only have it for max 8 months anyway and the bulk of the reduction is in the first 1 -3 cycles. It suggests your husband is stable and perhaps reached a plateau with that treatment – a break suggests he is possibly now at low level of MM which would be good. It can take a while for the chemo to come out of your system and to feel relatively “normal” again but my guess is you probably had this shock, life changing, diagnosis in October and was straight into treatment..hospital rounds etc, trying to stay positive and putting a brave face on it, waiting for treatment to end and life to resume as normal – light at the end of the tunnel etc – and then….the treatment stops, with no miraculous cure, a deep realisation of how this has changed your life, grieving for your old life, positivity wanes, what next questions?, what are you now working towards? what’s the point – is this how your life is going to be from now on? In reality you have come through a life changing trauma but it doesn’t end there and so I think it is natural to feel lost, tired, helpless, hopeless – battle fatigued. I am sure it is easy to stay in this state unless you are helped out of it. I would suggest you both need to start making goals to look forward to/achieve and really look at how you are going to manage your lives with this MM intrusion. I believe this is disease is a real mind **** so I would suggest for you both to look at future coping strategies/activities to take your mind off it and to inspire new dreams/passions. Now is the time to evaluate how you want to spend your time – is there anything he really wanted to do that you can work towards now? new interests/hobbies. When I was down I always treated myself with good activities – even a catch up coffee with friends..anything and everything that floats your boat. This means both of you – you have both been given a raw deal to bear so you need to gee one another up with future plans, desires etc. You will be entitled to counselling, courses such as mindfulness (living in the moment) start trying new relaxing things to see what will help you both to cope as you move forward as this is not going away – it may fade in time to the background of your mind but for a long while it is always at the forefront. Life can resume as near normal in time but in many ways it is a different life and with different goals – if you have been smart enough to re-evaluate what you want in life and decide to change your life pattern to incorporate your real dreams/hopes. You say your husband is sleeping a lot and whilst chemo is tiring this aspect may also be a symptom of depression and perhaps a little help from the Drs may ease him out of this mood. One thing I would say, from my experience, is do not treat him with kid gloves sometimes a dose of tough love is the best thing you can do. Let’s not forget your life has equally been changed so you must fight hard now for the life you want to live – you must be positive here and suggest the way forward and open up discussions about how to get the best out of life. It’s not easy but you can do it and go back to a lovely life again you just have to find the right path to take you there and talking about both your hopes and fears and regrets in life may help you on the first few steps. Best wishes,
Rebecca, thank you so much for taking time to reply to my post. I appreciate every word, all of which makes sense. It is so easy to get bogged down with emotion that sometimes the obvious is totally obscured. Setting goals seems a good way to focus and hopefully will put everything else into perspective. I am sure a bit of ‘tough love’ will also help. If nothing else you have given me an energy boost to move ever forward. All my thanks again.
Thank you, We have all been there and experienced just about every mood/emotion going. I have had MM near 4yrs (8 months chemo then a Stem cell transplant). I have no bone damage so am not hindered from exercising but what will get you through this is managing to control your mindset – you are both 100% in charge of your emotions/reactions – only “you” can make yourself cry or laugh as it’s your mind and your choice. So you have to look at things differently to stay positive. I feel good mental practises is the key to living well with this. I have tried many different things to help me.. mindfulness, yoga…exercise is now my preferred route but when it all began and I read a lot of books etc I started collecting motivational/life quotes which I used to use as my “mantra” at various points/differing moods to bring me back to what was important to me. I will leave you with some for food for thought:-
– Life is not a matter of holding good cards, but of playing poor cards well.
– Worry does not empty tomorrow of its troubles, it empties today of its strength.
– Be miserable or motivate yourself. Whatever has to be done, it’s always your choice.
– Don’t worry about the things you cannot control, just be stronger when they come along.
– The minute you think of giving up, think of the reason why you held on for so long.
– Life shrinks or expands in proportion to ones courage.
I have a book of them now and don’t refer to them but when I relapse I know my book will be out again and it will help refocus my now undisciplined mind. You will find your own coping strategies – the key is to explore them sooner rather than later. Good luck.
Good luck, Rebecca
Morning, I too am sorry to hear life is a bit rough for your husband and therefore you at the moment. I agree with what Rebecca says. After my treatment 8 years ago I felt very tired indeed, I would fall asleep anywhere any time, even the Hard Rock Cafe in London! I was unaware that my mood was low, my husband mentioned it to my Macmillan nurse who over a few weeks talked to me about taking a low dose of anti-depressant. Initially I was very much against more medication but once she explained that the chemical tank in my brain was empty and couldn’t be topped up without assistance it made sense to take it. I didn’t need to take it for too long(9months), it gave me the ability to see things more clearly, to realise I could take control of my life and very slowly start living again. Small things like a wee walk round the garden, a drive in the car with a stop for coffee (and cake), a visit to friends all led to doing bigger and better things for us both.
Wishing you and your husband all the best.
Rebecca speaks a lot of sense, people seem to concentrate so much on the inflicted to the detriment of the carer but the role of the carer is as important as the medics. Rebecca and Cashong’s point about tough love is important, my wife gave me s..t some days and at the time I hated her for it but thank her now. It is not easy when your future seems to be in tatters but it is not the end of the world. Your husband will be tired and sleeping is part of MM, I still need a kip now in the afternoon, but he needs to be given tasks to do, don’t do everything for him. During my SCT (in Germany) the nurses made me change my bedding every day, they brought in fresh everyday and no matter how weak or nauseus I felt, I had to do it. It’s all about being active, getting back self worth and purpose to lead a normal life.
After my initial diagnosis, I came out of hospital still suffering the after affects of Pneumonia, PAD chemo and diarrhea when my wife made me walk in the forest, 1st day 3km, next day 6km and the next 10km. It hurt but I think fitness is the key to recovery and positive mental attitude. Life will never be the same but it doesn’t mean your husband has to lock himself away and wallow in self pity. Introduce some structure to the day, e.g when you expect him to get up, small jobs to be done and time for the all important snooze. Has he any friends that can take him out for the afternoon? If he says he doesn’t want to go then make him. You also need the same for your own health, if you’re not there then he’ll have to do things for himself. I’m not talking seperation, just an afternoon or so away. It’s a really nasty mentally as well as physically draining illness for both the patient and the carer but a positive attitude will lead to a more positive life, after all if ex-forces amputees can walk to the Southpole then a little walk in the park for an MM sufferer should be nothing.
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