Hi Nicola it must be a reief for you that your dad has managed to go to the loo Hopefully as the build up clears his depression will ease Its hard to imagine how awful constipation can make you feel , my bowels stopped working for several weeks before I was diagnosed although I was lucky not to have a painful blockage With you by his side I am sure your dad will get through this horrible time and begin to see that although his life will change there are still a lot of good times ahead. I had to give up a job I loved too but I realised there are so many other things worth being here for , family being the main one. Fingers crossed it wont take long before his physical well being improves and he can see the good things he can still enjoy even going down the pub to see his mates although roller skating might be risky ! Please pass on my best wishes to your dad Make sure you look after yourself too and have a break sometimes.I think your dad must be very proud to have such a caring daughter and together you can get through this love Bridget
Hi David how right you are when you say it puts things in perspective people are just amazing in giving to others when no-one would blame them for concentrating on themselves. A huge loss not only to her family but to so many others love Bridget x
Hi May I am glad you got up courage to post I am sure you will find it easier to cope with support on here. As I am sure you have realised myeloma is a very individual illness and we all react differently to the treatments so its hard to compare one person with another . Try not to get too down that the treatments your mum has had so far havent worked , there are so many combinations and drugs they can try till they get the right one for your mum. Paraprotein levels of about 20 are high but not drastically so , I had about 98% myeloma when I was diagnosed. Its great that your mum is getting on with life , having a positive frame opf mind helps with any illness Try not to get too down May you are a long way off having to prepare goodbyes , take it one day at a time and enjoy spending time with your mum Best wishes to you and your mum Bridget
Great news Eve you must both be on cloud nine!! Poor Slim has been through so much it must such a relief Get travelling and enjoy all the things you have been dreaming of love Bridget x
Hi Nicola so sorry your dad is having such an awful time, it must be so hard for you Its little wonder he is feeling down after having been through so much so try not to take it too much to heart when he talks of dying The doctors wouldnt put him through chemo if they didnt think he had a fighting chance. Did he have radiotherapy recently? That could be the reason he is having bowel and bladder problems but it should get better fairly soon if that is the reason Unfortunately a lot of the drugs we take can cause constipation , sometimes I have to take 3 different laxatives to keep things moving I hope they can sort out the cause of his infections very soon and he can start to feel better but in the meantime talk to his specialist nurse again so that you know exactly which direction they are taking with his treatment . I am sorry I cant offer any useful advice about your dads treatment but as Mavis said dont give up a lot of us have been really low and managed to bounce back again Please post when you need to , its a huge burden for you to carry and there is always someone here who can understand Hang in there and best wishes to your dad Bridget x
Hi Min and Stuart it is reassuring to know there are people to help at our hospitals Those forms are such a nightmare I break out in a sweat even though my job entailed helping others fill out benefit forms , just cant do my own On the radio today there was a discussion on the proposed reforms to disability benefits , made me so angry there was steam coming out of my ears!! They are suggesting that even patients having chemo should be fit to work , no talk of individual needs or circumstances Grr bring on the revolution Apart from that moan wishing you both a happy new year and hopefully things will get easier for you Min love Bridget x
Hi Kay so sorry to hear your sct results are disappointing , I dont have any personal experience that would help but I am sending all the positive vibes I can your way Are you on Zometa or Parmidronate? One of these may help your bone pain which a lot of us have and those pains may not mean anything more sinister is happening just a rather unpleasant aspect of mm . I had pn after Velcade and if I remember right it took about 3 months before it went once I had stopped having Velcade It was a gradual process so fingers crossed yours will start to ease up soon. Good luck with your scan and clinic appointment I really hope you get some good news Love Bridget x
Hi Heather welcome to our merry band ! Good to hear your treatment has gone well so far and I remember that lost feeling after my sct 4 years ago It does get better though but remember you have been through a huge physical trauma as well as having to cope with the news you have myeloma. I was diagnosed 5 years ago after a year of agonising back pain which turned out to be 3 destroyed vertebrae and extensive bone damage everywhere else , they were amazed I was able to walk A spinal reconstruction meant it was safe to let me out of the wheelchair and I had my sct 6 months later Try and take each day as it comes and life will begin to be more normal if different I suppose you would be able to have a staged return to work if thats what you decide which would give you some time to adjust In my case it was not possible to return to work as I worked in family support and child protection , a lot of outreach work, and my compromised mobility made it unsafe as not everyone was pleased to see me !!The other aspect which made it difficult was the high level of pain killing drugs which can make me more tired Chemo brain played its part too , my memory is now dreadful!!Perhaps a chat with your manager or HR would put your mind at ease I hope the NHS looks after its staff in situations like yours!! As others have said travel and enjoy life again but remember to listen to your body and not overdo things especially this early Good luck and please let us know how you get on Sorry if this post is a bit waffly! Bridget
Hi Mari I am glad you had a good christmas. Dex is such a strange drug and it amazes me how differently we all react to it . I did get lots of bloating and water retention too and now always take ferusimide The other unfortunate side-effect for me is excessive wind , very embarassing ! I think the lethargy is something you are stuck with due to Velcade , I know that for me both Velcade and Revlimid made me very lethargic and tired. I hope the side-effects dont get any worse for Steve ,ost importantly it does the job of getting mm under control Heres hoping 2012 brings a very long remission ! lots of love to you both Bridget xx
Hi Dai sorry I missed your birthday post but good to hear you enjoyed yourself , I wouldnt expect any less of you! Sorry cant help with the pn problem although mine did go away after a few months of stopping Velcade and I remember thinking it was taking forever too I really enjoyed christmas and having 2 daughters ,grandson and dog to stay but they all went home tonight and it is heaven to stretch out on the sofa watching tv in peace It is official I am a couch potato! love to you and Janet and happy new year Bridget x
Dear Michelle I can only imagine the pain you are going through as Min said this bl–dy awful illness! Dont give up yet I was on Velcade and Revlimid neither one worked but my doctors have put me on Bendamustine and Thalidomide I am not on a trial but apparently these drugs can be applied for under special circumstances Ask your husbands doctors about it , although those two drugs may not be right for him there are others such as Polpomanide ( not sure of spelling) Take each day as it comes , talk to each other about the things that matter. I hope that something comes up very soon that will give you hope love to you both Bridget x
Hi Chris welcome Although it has been 5 years since I was diagnosed I can remember feeling very confused , angry , sad and at other times flippant and off- hand about it, I imagine a lot of people would also recognise your description too so you are not alone. Believe it or not things will get easier as you get your head around the treatment and all the medical terminology it becomes less confusing Your doctor sounds as if he has a very positive approach to your treatment which always helps ,yes there is no cure as yet but there have been so many new drugs in a short space of time it is becoming a manageable illness Some have achieved complete remission after a stem cell transplant too , there are a few on this site who will no doubt answer your post Bone marrow biopsies are awful , didnt they offer you sedation? I have had more than a dozen but only one without sedation , never again! I would definitely ask if I were you no point suffering .How are you getting on with your pain management now ? I had radiotherapy for awful back pain due to a new tumour few months ago and it worked brilliantly. I take very high doses of Oxycontin mainly because the bone damage is very extensive in my case and my spine was reconstructed with metal rods and plates after losing 3 vertebrae before being diagnosed. Hang in there your life has changed but you will get some normality back and hopefully a very long remission after your treatment Good luck and best wishes Bridget
Hi Jean I am so glad you had a good time it sounds wonderful especially having all the family together . I am sure Frank thinks its worth a few extra hours sleep .I couldnt open the photo but I will try again later Wishing you all a healthy happy new year love Bridget x
Hi Linda welcome to the group Nowhere will you find more support and first hand experience of myeloma from such a fantastic bunch of people! I am glad your husband isnt having too many problems with his chemo Although everything seems very confusing at first it does get better You will find that hospitals , treatment and everything that goes with it become part of your normality rather than a huge dramatic event in a fairly short space of time Dont be too hard on yourself if you sometimes need a good cry , we all do sometimes, there is always someone on here to help ease the burden for those times Wishing you both all the best for the coming year Bridget
Hi Shirley so glad you had a lovely christmas and your lovely family spoiled you , you deserve it. We had a wonderful time too Two of my daughters and the eldest grandson stayed on christmas eve as usual so it was a bit crammed here Unfortunately George was so excited this year he didnt sleep all night so neither did anyone else as we were waiting to fill his stocking haha ! Christmas evening was very quiet though they were all in bed by nine , good job they made up for it at the big family shindig on Boxing Day Heres to a very happy and healthy new year for everyone lots of love Bridget x
