Hi Dai you are so right the lack of information to people who could be eligible for benefits is a disgrace Especially when there are politically engineered media campaigns to shop benefit cheats, the latest being anyone claiming DLA It makes my blood boil that they think we are all so gullible and stupid and could be conned by these manipulations of statistics Not only that but it is becoming dangerous too Last week I read an article by a woman who needed to use a wheelchair She had no obvious disability and having used a disabled parking bay was set upon by a group of people who accused her of being a cheat ! She was dragged from her chair by the hair , spat upon This woman is now frightened to leave her house unless someone is with her and as a result has lost her independance What a sad indictment of our society in the 21st century !! Sorry rant over love to you and Janet Bridget x
Hi Tom sorry didnt see your post this morning, mind I dont see much in the morning I am a bit like a zombie before 10 am !! Thats the trouble with Thalidomide it totally knocks me out at night and I am useless when I first wake up!! You wouldnt believe the times I have dozed off with a cuppa in my hand If I shut my eyes my grandson usually shouts Nan you are going to spill your coffee!! Haha nothing like an 11 year old keeping watch over me , bless him This sunshine certainly makes me more cheerful though and its easier to put up with a bit of pain if the sky is blue too Hope you are having a good weekend Are you on babysitting duty this weekend ? My grandson is here tonight so we have had a lovely evening watching BGT and in between he gives me action replays of his latest goals He hasnt twigged yet that I know absolutely nothing about football Haha been bluffing for years and it seems to have worked ! Love to you and Elaine Bridget x
Hi Carol sorry to hear you are having pain trouble it can really get you down cant it Still great news that the mri ruled out anything nasty though Hopefully this spell of warm weather will help a little If nothing else the sun makes us all feel a bit more cheerful Keep smiling your lovely smile love Bridget x
Thanks Dai it never hurts to be reminded how important it is to eat healthily love Bridget x
Hi Tom and welcome to the best support group you could wish for Good luck on your walk I look forward to hearing how you get on Bridget
Dear Michelle I am so sorry you have lost your husband far too soon to this lousy illness . It must be a comfort to know all the people who loved him were with him at the end The days ahead will be hard for all of you but together you will get through it Hang on to those lovely memories of your life together . Although Phil is not here physically he was your soul mate and will always be in your heart Look after yourself and please keep in touch if you feel able to Love Bridget x
Hi Dai the lovely Dex a necessary evil we love to hate!! I have had the mouth tingling too , not too troublesome though just a minor annoyance . I also have trouble passing water at times which I found puzzling but I think you have hit the nail on the head it is likely to be Dex I just hadnt thought of it before Both these side-effects are just a little annoying but I have never mentioned it in clinic , perhaps I will next time to see if the docs are aware of them . Eva you must have been terrified that sounds absolutely awful The benefits of Dex are what makes me put up with it though as several times it has reduced tumours considerably so I suppose I will carry on taking and have a quiet grumble from time to time ! love Bridget x
Hi Nicole I am so sorry you didnt have longer with your dad but take some comfort that he is no longer in pain . He was with the people he loved and that must have meant a lot to him .He will always be with you try and remember all the good times to get you through As Helen said live your life well that will be the best tribute to your dad Stay strong and keep in touch love Bridget x
Hi Dai I am so pleased for you It is such a boost when test results are good and as you said now you know Rev and Dex are getting on with the business of getting the beast back in its lair!! I hope it gets rid of your shoulder pain quickly , no wonder you were feeling down pain like that is so unrelenting Heres to the future Dai its looking good love Bridget x
Hi David hope you start to feel better very soon love Bridget x
Hi Janet no wonder you are devastated five years is a long time to be in remission As Nettie said though there are so many new treatments available now and more in the pipeline which look promising Remember your doctors can suggest a treatment but the choice is yours! If you really dont want to go through an sct again they will suggest other treatments for you I was adamant about not having a second sct as the first was pretty bad but when I was on the Myeloma X Trial I wasnt chosen for an sct and I was very disappointed!! I know I am contrary but I would have had the sct as it offers the chance of a long time free from heavy duty drugs Chat to your specialist nurse who will know more about various treatments that could be used Good luck and let us know how you get on Bridget
Hi Dai I second that the world is definitely a nicer place for all of us if the sun shines!! Like you I dont miss alcohol To be honest I only drank on rare occasions , mainly because it acted like poison and caused 2 day hangovers from hell !! No problem when I was young and out all the time but my consumption dropped when I had children and it just wasnt wirth feeling rubbish The advantage of getting older is not having to keep up with everyone eles I am quite happy to say no thanks and enjoy myself in my own quiet way Thers a new study out that showed despite illness and decling health we are all happier as we get older, cheered me up no end !! love Bridget x
Hi Tom I am not too bad thanks You are so right about the warmer weather nothing makes me more miserable than being cold!! A little sunshine makes everyone happier , even getting served in a shop is nicer cos the staff smile back at you on a sunny day!! Unfortunately wine is a no-go for me , I havent had a drink since I was diagnosed 5 years ago , I darent with the high doses of morphine I would be under the table in 5 minutes flat!! So I think you should drink my share Tom it seems only fair!! Haha love to you and Elaine Bridget x
Hi Helen I know what you mean about facebook I dont think I could handle tweeting just cant get my head around it somehow!! I hope you shake off the pneumonia very soon it makes you feel wretched doesnt it Like you I was never ill till myeloma reared its ugly head but I have had pneumonia twice in the last few years I suppose chemo is as much to blame as mm though The risk of pneumonia is one of the reasons I cant have high dose chemo like melphalan Initially my bloods seemed fine but the levels were always low after my sct so I think thats when it changed The doctors finally admitted I was a non- secretor a couple of years ago after trying to use the free light chain blood testwhich wasnt much help In a way I am lucky as my relapses have all been with tumours rather than organ failure so not too much damage done once they realise. I havent heard the term oligo before though, you learn something new every day!! Are your doctors good at listening to how you feel as well as test results? Mine are great as they ask if there is any new pain or symptoms so if test results are iffy they begin investigating straight away I am the sort of patient who likes to be involved rather than just told what to do ( thanks to having a daughter with cystic fibrosis — pushiest mums ever!!) Poor George is likely to need root canal work done at some point in the future but the hospital doesnt actuall do follow up treatment you have to go to your own dentistAs long as we can stop it getting infected though anything else can be done at a much later date Which area of nursing did you work in Helen ? I am sure you must miss work , I do even after 5 years, I worked in Child Protection and I used to get so angry that myeloma stole my work from me Unfortunately my clients werent always pleased to see me , not like when a lovely nurse visits, so you need a certain level of fitness to keep safe being able to run like hell helps ! Haha love Bridget x
Hi Helen this week has certainly been better than last !! I am coming to terms with the situationbut at the same time there are some questions I need to ask my doctors about possible treatments. I was thinking tonight that it would actually be easier , in some ways, if I were less aware about mm and the implications of various treatments , we they do say ignorance is bliss!! After all the heavy duty treatment over the last 4 years I know my body cant tolerate the toxic treatments which would sort out this mm once and for all , I have known that buying some time was my best hope for a long time now so the news wasnt a total surprise( still didnt like hearing it though!!) I have complete faith in the docs at UCH though so I am sure if there is something suitable for me they will find it For now I will just carry on as normal the pain isnt too bad and I am just hoping the radiotherapy has sorted out the spinal tumourWhilst I wont be taking up bungee jumping I will get on with things as it does your head in when you are afraid to do anything for fear of being paralysed This might make you smile –it was like an epsode of casualty here earlier! I opened the door to find my eleven year old grandson with a face covered in blood crying and his mum was crying even more He had fallen and knocked 2 teeth out but clever boy knew to pick the tooth up and take it home Off to A and E we went , one upset boy and one daughter liable to pass out at the sight of blood!! What fun ! After 5 hours his tooth was back in and held by wires and he was much happier, the doctor was brilliant with him As we were talking to the doctor my lovely daughter was a funny shade of green and got the doctor worried till Tamzin told her it was because she hadnt eaten ! I wanted to giggle but I dont know how a child of mine can be such a wimp They think I am hard as nails I just hope she realises that sympathy doesnt always help kids deal with stuff like that and not having eaten for a few hours is not life threatening! Sorry Helen that was a bit of a ramble must be cracking up! Hope things are good for you love Bridget x
