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Hi I have read lots of posts on here and most fill me with hope, there is so much positivity and support. I was diagnosed with MM in May 2013 and after undergoing treatment had my stem cell transplant in February. I have just gone back to work this week on a phased return. I dealt with the diagnosis, treatment and transplant and was amazed at how I coped, however now I seem to have hit a wall and the strength I had seems to have disappeared. Have others felt this way? I am all of a sudden terrified of MM returning, constantly worrying about this and what the potential outcome would be. I have tried to turn my thinking around and live in the moment but am not doing that very well.
I feel anxious and quite low and would love to hear from others who may have gone through this and hear how they coped xx
Hi Pauline, I know exactly how you feel had my SCT at Xmas and am monitored 2 monthly but got my results today and was told I would be seen in September sometime – my light chains are in ratio but trending upwards and I find this bit is far worse than the before SCT bit. I guess for a year my focus was purely on getting to SCT stage (had problems getting there due to kidney damage) and I think I viewed it as the “end” of it for a long time and never really thought beyond that point. In reality you are striving for a goal in SCT but after SCT and the monitoring I just feel like I’m helplessly waiting/watching it creeping back and not even chemo yet to feel as tho you are doing anything positive in fighting it. I know I should be relishing being off treatment, normal quality of life and all but now I feel that that is the “norm” now like pre diagnosis and gives me little comfort. My mind set should be enjoy each day like its my last etc but mentally I feel like a deflated balloon and yet it is so much better now than when I was on treatment why am I not constantly doing a merry jig? I was always very positive throughout treatment and strove hard to retain a normal QOL. I guess now it’s like being a sitting duck when before I felt I was battling away – although in reality you only battle for your normal QOL rather than your disease biology. It definitely needs a different mind set for this part of the game and I know I will have to sort this bit out also. I was told that after transplant people generally benefitted from counselling and could become quite depressed but as I never felt this at diagnosis/treatment phase why would I consider it now? It’s very strange. Sorry I’m not being any use to you but hope someone with some good ideas write in – other than give yourself a kick up the bum and be grateful! tho’ this too doesn’t really do it for me now! Suggestions please…
Good luck, Rebecca
Rebecca thanks for your response it is so comforting to know I am not alone. I know exactly what you mean and you have managed to capture so much of what goes through my own mind. I have been trying to muddle through and keep how I have been feeling to myself because I feel my family have been through so much with me that I dont want to worry them and to be honest beat myself up about not doing a merry jig every day !! I only ever get my paraprotein level at the hospital so am not sure what light chains are? If yours are trending upwards what does that indicate?
I have contacted the myeloma support group and am going to go along to their next meeting and have had support from Maggies too. I just was not prepared for this low and anxious state because like you I dealt with everything head on and was so positive. However you have helped me because I realise I am not alone and like you say perhaps others who have been here and worked through can give us some good ideas?
thanks
Pauline
Hi, I don’t know if you will find a support group “comforting” because you are likely to be surrounded by much older people – they say 70 is the average age to get it? Whilst we are all in the same boat and all want to live just as much I feel I cannot really relate to the people in the waiting room – I have a young daughter not settled in life etc and think I would cope better in another 20 years time when I know she is ok/independent so a support group wouldn’t help me as we are on different paths of the same journey but I do hope you get something out of it. I am also wary of people “leaving” a support group as it affects me a lot when people who have posted on here leave.
Rebecca
Hi Pauline, forgot to answer your questions in your post – some people have MM that is measured by paraproteins – generally heavy chain MM and some have light chain MM – often without the paraprotein indicator (like myself) so is measured by the “light chains”. I am within range for the LC’s and within ratio which means it is normal/remission but is trending to near top side of normal. This would not normally be a worry but the light chains damaged my kidneys and I only need a little rise and my kidney function goes down – was 30 then 28 now 25 and light chains still in normal range! My white cells and neutrophils have taken a big hit as well but don’t know why.I worry more about my kidneys finishing me off than the MM but having said that my kidneys altho so rubbish don’t seem to adversely affect me doing anything I go to the gym, play tennis etc and don’t have any tiredness so if I live “in the moment” life should be hunky-dory – in fact just comeback from 2hrs of tennis after work! Mood is lifting a little now guess it’s the bloods/results that bring it all to the forefront of the mind. I never tell my family about how I really feel because I feel we all share the burden and don’t feel I/they benefit from sharing any misery further. In fact, I never told anyone (except hubby and 2 friends) about my cancer until I went in for harvesting for the SCt and realised I couldn’t explain it/SCT away as the usual “kidney problem” excuse! I have never felt the need to be supported and I never regretted the decision because it enabled me to lead a “cancer” free life for a year unlike when my parents and sister was told ( all other family are still in the dark)and then it always seemed to be in the forefront of everyones thoughts/conversation etc which I hate – I hate giving cancer “air time” the only time I do is on here – a habit I feel I should break also.
Hi Pauline, since you started this post I have thought about it a lot because I was in a bit of a quanderry about it myself but I think I’ve cracked it now. when I was on treatment I was highly disciplined in my mindset and blocking out any negativity, highly focused – exercised a lot even when very tired and I think this got me through it, was very kind to myself and had a little treat each day (very selfish!) be it coffee with a friend etc. After transplant I was highly focused in getting my fitness back – done – went back to work and I think the problem is I have tried to resume life pre-diagnosis rather than post transplant and therefor. have got lax with my mental exercises Since you posted I have gone back to my disciplined approach re mindset and exercise and feel great. I joined the gym again and forgot a song that I played relentlessly throughout my treatment period/in the car to treatment/ when I felt down/gym – get the jist? Anyway played it and ran and ran and felt so strong again I forgot how good exercise and the power of music is. It’s Gabriella Cilmi “ON a Mission” and is very fast, powerful, lyrically great…
I am a woman on a mission whoa
Nothing can stop me, I’m stronger than ever
I’m gunna see this through
I am a woman on a mission whoa
Whatever it takes I will do what I gotta do
etc. I have gone back to exercise with a vengeance – which I love – playing my music and banishing any negativity. So I think whatever made you feel so strong during treatment you have to resurrect/continue and enjoy it that bit more without treatment dragging you down. I have even gone back to being slightly more self focused on the little treats as well! This is not a sprint but a marathon so we can never stop maintaining our fitness/focus. I do hope you download this song, blast it in the car, on a jog, walking etc I had forgotten how much I had relied on it. so I guess you need to use what tools you created to get this far and continue with them. Good Luck Rebecca
Wow. This is so me right now. Struggling with concentration, bored all the time and feeling depressed a lot.
im planning a new hobby brewing and trying to get into that, need to drop a few kilos which hopefully will help my mood and going to start swimming.
I got told in clinic that Im mildly depressed so going to take their advice I think and seek help .
so glad I read this, thank you
Post traumatic stress syndrome is often a by product of what we have been through. Some find counselling helped. My move back to Australia and endless sunshine and surf have helped me deal with the depression I was struggling with after transplant in London.
Carol
Thanks Carol can see how that helps lol. Just back from Jamaica and currently obsessed with booking my next trip…
Probably to Aus to see my extended family and the barrier reef hopefully.
Hi Pauline,
I was diagnosed at the same time as you, congratulations for starting back at work, I have yet to achieve that, you should be very proud. Yes it can be daunting can’t it, thinking that MM will return, you are not alone with this. As you say though, the key is to take one day at a time, try to live as healthily and as positively as you can each day and avoid stress. I find meditation really helps with this.
There is an amazing bunch of people on this site, people that have been dealt a poor hand but keep moving forward. Hope you had a great holiday Anthony and your holiday to Aus is awesome, we all need something to look forward to, I think we deserve it.
‘You can believe the diagnosis but you do not have to believe the prognosis’
Take care all,
Matt
mattkbo.
Hi all
I was diagnosed last year in July, had chemo from August onwards and had my transplant in Feb 2015. My focus was always on the next part of the procedure, such as the next chemo session. Once chemo was finished, the focus was on the SCT and then during this, it was all about returning to work, which I did at the beginning of April (quite early I understand.) Now that I am back to work, I feel like the rest of you. I don’t seem to have the excitement or the focus. So what now? The only thing I can think of is to set a new objective so I don’t keep thinking of when MM might come back. I’ve had objectives all the way through but my last objective was getting back to work. I guess as with all objectives, once achieved, you have to set new ones so that is what I am going to do. Problem is, I can’t think what they might be as yet!
Thinking cap on.
Hi Bernard, glad to hear you are doing so well – a very quick return to work – I could have gone back but chose to have 6 months off to focus on me/life/fitness as, let’s face it, we have been through a lot. I think it’s important now to not slip back to work focus etc and to consciously look at what you want out of life and a plan on how to get there for you and your family. Now 17 months on drug free I feel I am as normal as anyone and time is not more limited – I Know this is not the case but when your are well etc it is easy to …not waste time but… lets say not utilise your time as best you can to make you/family as happy as can be. My outlook has changed a lot in that I try and do things I/family want to do rather than muddle through life (like it was pre MM) but again, it’s a different mindset and needs mentally flexing to stay focussed. I hope your objectives are your/families personal goals in life. It is a difficult balance when young – you don’t want to blow all your money doing what you want to the detriment of future financial security but I have found you don’t need to blow all your money to be happier. When diagnosed I tried to compile a bucket list as an objective but found I appeared to lack imagination as all I really want is to do things with the family and we have – not my list but more theirs but sharing in their happiness is I guess my objective – doing something together.I do, however, treat myself much more with “my time/hobbies” and reduced my work hours. The check ups do get easier as time passes and I now tend to gauge myself on how well I feel. I have even stopped asking for prints and analysing everything like I did for the first year – quite a breakthrough and my dr keeps asking me to go on 3 monthly checks (currently on 2 months) and I keep saying I’m not ready to do that yet but have told him I will consider it soon! Enjoy this time – don’t waste it – aim high and stay focussed. Without sounding weird I have found hiking in the countryside a great calming influence and every now and again I like to walk on the coast and see the sea. It always appears uplifting on many ways. Now’s the time for “whatever floats your boat”.
Rebecca
I always feel better once I have been on this forum,it helps to know that I am not alone in how I feel.So much of what has been said rings so true.I was diagnosed in 2014 and had sct same year and my pp levels are very low but are on the up,i had very good result immediately after sct,complete remission till may this year.I was of a very positive mindset throughout and immediately after sct but when I was told pp levels up that’s when I got into a downward spiral and am struggling to find my way out of at the moment,some days a better than others and I know I need to get back to being positive but its hard.Any suggestions would be greatfully appreciated
Wow was strangely comforting reading your’e post i am in the exact same place had sct in march doing ok on maintenance lenalidomide and bcak every 4 weeks for zometa.
Feel a fraud because everyone is more buzzing than me . One thing you said is so true while on chemo something positive is happening and its worth it,your’e building up to sct, but after sct consultant every 8 weeks i do feel like i’m waiting for return which makes mee feel guilty,i dont want it back at least not for several years i’ve got wife and 2 kids who are my world.
But it is a very strange place you can find yourself in after sct feeling useless .. at least i know its not just me, good luck and god bless with your’e fight x
hi robbojnn – good days are now getting more but still have odd days,i have next consultant appointment end of august and hoping pp levels haven’t gone up again,not on maintainance so I guess that’s a good thing maybe!! I know this time I will be asking lots of more questions that I have before so that I can get the facts or figures straight in my head and have a complete understanding of what its means I think this will help.Way I see it I aint giving up,the power of positive thinking is strong and as long as I can get general stress levels down,i think I am going to be good for a long time yet.I have a wonderful husband and a 19yr old daughter(stressing me at moment!! don’t they all !) and I have plans,so stay strong,think positive and we can all beat this ,good luck and god bless to you to x
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