Thankyou David this is so wonderfully funny its made my day! I shall pass it on to all the crumblies I know too love Bridget x
Hi Min so sorry for getting mixed up its what happens when I answer posts late at night when my poor old brain has gone to sleep. You will have a great time with your son let alone all the other stuff like sun etc! Great to hear you are feeling better and probably worth stiking with those little wonder tablets ! Min I think you are amazing with all you have gone through and finishing the kitchen too , I bet Peter would be so proud. Mind you I had to laugh about the saw even if I dont know one end of a chop saw from the other!! I would have lost a few fingers at least Have a wonderful holiday Min and I am hoping you will post some pics when you get back lots of love Bridget xx
Oh Dai sorry to hear S—s Law has struck again and you are feeling rotten too! I hate it if I have to go to hospital on a FAriday because the chances are very little will be done over the weekend and I end up stuck on a ward when I know home would be a much better place to get well Trouble is there are times when I have been proved wrong and developed pneumonia! I hope the scan rules pneumonia out and you get home very quickly Poor Janet must feel lousy too I hope she feels better soon as well love to you both Bridget x
Haha good one Min ! My reply is GIGGLER that is just like me!! Bridget x
Hi Peggy wow you had a lucky escape! It just shows we cant afford to ignore our symptoms for too long , which I am guilty of ! Hopefully you will never have to be in that position again though so take care and look after yourself love Bridget x
Hi Christine its good to hear from you and great to hear Velcade is doing a good job getting your dads pps down . I remember being very frustrated when on Velcade because I felt so awful for the first part of my week off and others have said the same As its worked so well has anyone suggested a lowerd dose? It might be possible to lower the dose without it being less effective , perhaps you could ring your dads nurse for a chat I do remember feeling so exhausted and tearful near the end of my first lot of treatment so try not to worry too much it is fairly common. If I remember right it doesnt take too long once you stop Velcade before you feel better . I know it must seem this part of your dads treatment is lasting for ever but he will soon be over the worst and he can then start to build his strength up Have they said what the next plan for treatment is? Hopefully they will give him a break before starting anything else. Hang in there Christine life will get better for all of you it just takes time to adjust and your dads weaker not only from the drugs but also the myeloma too It might take some time before your dads mobility improves the most important thing is for him to listen to his body and not overdo it , resting when he needs to even though it is frustrating .
Once dad finishes on Velcade you will find his appetite will improve too , have a chat with the nurse about ways to help him eat too Because the steroids mess up your taste it can be hard to enjoy food so dad is best having whatever he fancies , even if it is curry for breakfast!!Small portions are better and frequent snacks rather than a big meal are good too As I said keep going Christine the worst is almost over and once your dad has an sct hopefully he will get a really long remisssion where he wont need any treatment for a long time Please say hi to your mum and dad love Bridget x
Hi Mal and Bruce I hope Bruce isnt feeling too awful Happy anniversary , sorry its late didnt see your post . I am sure you will be able to celebrate in style once all this is behind you and life can be fun again love to you both Bridget x
Hi Deedee and welcome now that you have found this site and all the lovely people on here you need never feel you are alone in living with myeloma At first its so hard to come to terms with myeloma and everything it means , let alone all the medical terms and treatments but in a short while it will all start to make sense Just take it a day at a time and try not to worry too far ahead In time life with myeloma becomes normal as you find your own way to deal with it. I hope Mike gets over his infection quickly , oral thrush is quite common but easily treated He probably wont have much of an appetite for a while, my advice would be to give him smaller portions at meals on a small plate as it doesnt overwhelm you Deedee make sure you look after yourself too , in many ways you have the hardest job I think its easier being the patient most of the time . I shall look forward to your posts Best wishes Bridget
Hi Caz and welcometo club none of us wanted to join. I was diagnosed 5 years ago and I have had the full range of treatment so far! On being diagnosed I had to have spinal reconstruction as 3 vertebrae were destroyed This was followed by CDT and SCT , which gave me 18 months partial remissionWhen I relapsed with a new tumour on my spine I went on the Myeloma X Trial which was not a walk in the park unfortunately ! Since then I have been on Velcade which only worked for a few months before another tumour appeared Then it was Revlimid again it only worked for a short while before yet another tumour came along , this one was the most painful but thankfully radiotherapy has got rid of it . I am about to start Bendamustine next week and hopefully this will be effective for longer! The issue of keeping your appetite is fairly common and I find it difficult too but I have learnt to eat small amounts rather than a big meal and not to get too stressed over it Dex is the problem for me as soon as I start on it my taste is affected, on the other hand being on Dex for such a long time has meant a weight gain too Sorry but I cant think of any useful tips at present , I will come back when my little brain is working!! I am sure you will get lots of responses from others too . Take care and good luck Bridget
Thank you David what a touching video Some people are truly special whatever life has dealt them Eve I have worked in special needs schools and they are wonderfully joyous places wher it does your soul good to spend time with the children love Bridget x
Dear Min its lovely to hear you feeling a bit more like yourself Have a wonderful holiday with Tony and his family , the endless sunshine and shopping doesnt sound too bad either ! It is so hard for children to understand how someone they love is gonebut your grandson will find a way to come to terms with it and having you there will help him a lot . I am sure you already know but there are lots of lovely books to help children grieve , libraries or Amazon and Macmillan do excellent storybooks too . I did a lot of work with children who were grieving and what helps them most is being able to talk freely about the person they have lost , even writing letters helps them feel more in control ( sorry if you already knew all that) Have a great time and I cant wait to see some pics of Dubai even if I will be green with envy lots of love Bridget x
Hi Eve like you life has taught me things always get better in the end too ! I have always told my children to smile when they are feeling down It may start off being a false smile but just keep on and people around you smile too , eventually there is nothing false about it Hope you and Slim are having a good weekend love Bridget x
Hi Gina thank you so much for keeping us up to date on how mums keeping , she has been in my thoughts a lot lately and its good to hear she is back on treatment . I think getting out and about is a great idea for lifting your mums spirits , I know when the longer I am stuck indoors when poorly the worse I feel . Hopefully there are still a few sunshine days left to enjoy before the weather changes The very best thing for your mum is you though , its wonderful to hear how you take care of her and enjoy her company she must be so proud of you! Thanks for mentioning the flu jab I must remember to get ours done next week before I start on Bendamustine . Say hi to mum and keep smiling love Bridget x
Hi Mal and Bruce good to hear things are going well Bruce hopefully it wont be long before you are home again You both hve such a positive outlook on things I am sure it will help you get through the rough bits . Mal I hope you try and get some rest too its often much harder watching someone you love going through tough times and even just hospital visiting is exhausting So make sure you take a break now and again , that way you will be fighting fit when Bruce comes home love Bridget x
Hi Sue good to hear your day wasnt too bad even if it was tiring( it always is!) Interesting news about the new trials I will keep my eyes and ears open too Incidentally my consultant feels that not being able to measure paraproteins should not prevent us from taking part in trialsas I had been told before , they can only measure any activity with me through mri and bmb so I am relieved to hear that Have a good weekend love Bridgetx
