Hi Tina thankyou thats reassuring to know after Revlimid Although to be fair the side-effects with Revlimid werent terrible just a real pain when combined with Dex . Watch this space ! love Bridgetx
Hi Nadine and welcome ,sorry I seem to have missed your original post. It sounds as if you and your mum are coping well with getting to grips with this myeloma lark. It struck me when you said you are being strong for your mum that perhaps she is doing exactly the same to protect you and this could be making it difficult to talk But try not to worry it will happen with time If your mum is reasonably fit and her doctors reccomend it then SCT is deinitely the way to go I had 18months partial remission and freedom from all the medication , more importantly it gave me the time to build my strength up As others have said its no walk in the park and you have to give your body time to recover, which can be so frustrating at times , but you soon realise your own limits I too have adult daughters and we dont talk about my treatment very often , as Eve says they have their lives and I really dont want their lives taken over by myeloma When I need help they are there for me though So please dont feel you are letting your mum down , she must be very proud of you and know she can call on you when necessary One day at a time is good advice too, eventually life does become more normal as you learn to live with myeloma and all that goes with it Good luck to your mum and you as well Dont forget there are lots of lovely people on here only too glad to help with advice or even just to listen best wishes Bridget
Hi Jean I wondered what happened to that post!! I was writing about how exhausted the radiotherapy has made me feel and then I dont know what happened!! But I can honestly say I have never felt so tired in my lifeLast year they told me tiredness could be a side-effect of the RT but I didnt feel any different It may be because I still have these lousy cold symptoms it is making it worse but it is so hard even to walk upstairs, in fact I couldnt manage to get dressed the other day( Lazy thing!!) The best news is I have had none of the terrible pain in my back , hurray!! I am being cautious though as the steroids are probably keeping it down , by next week I will be more certain it has worked Anyway thats my update Jean and I am sorry if my strange post worried you Hope you are well and enjoying some sunshine , its lovely here love Bridget x
Hi Mary and Theresa how lovely to hear from you. I am glad your holiday felt right and it must have been such a comfort for your mum that you were with her Both your parents must be very proud to have such lovely caring daughters, you are a credit to them Take care and please pass on my best wishes to your mum love Bridget xx
Hi Susannah wow you have certainly been kept busy!! I am glad to hear both Michael and your daughter are feeling better though but now is the time for you to look after yourself! Go and treat yourself to some pampering you deserve it! I will be starting Bendamuste in the next couple of weeks it was a choice between that and a course of heavy duty chemo( I have forgotten the name) but both the docs and myself agreed I am not physically strong enough to cope with the chemo and and any infections that might follow. So heres to a healthier and peaceful times for all of us love Bridget x
My word to follow that one is LAMINATED which leaves TED
Hi Paul not all doctors classify patients myeloma type to them so you will get various answers to your question When I was first diagnosed they were able to measure my paraprotein levels and therefore the level of myeloma in standard blood tests When this proved inaccurate after a couple of years, I relapsed with a large tumour and still had low paraproteins, they began to use the Serum Free Light Chain Test. This seemed to work well until my next relapse failed to show up either So now I am classified as a non-secretor , my myeloma activity can only be determined through mri scans and of course any changes in myself such as pain This is what alerted me to my latest relapse , confirmed by the mri scan My advice is to always be aware of yoyr body and dont ignore any pain that hangs around for a while Your doctors will be only too happy to check it out for your peace of mind Hope this helped a little love Bridget x
Hi Carol thank you for caring and I would never think you were a pest for asking ! So far so good no pain for the last few days but as I took extra Dex this could be masking it The radiographers always point out things get worse before they get better so I am being cautious for a while yet ! Still its looking very promising apart from a bit of a burn on my back which is easily treated with aqueous cream and a very small tattoo on my very large steroid belly!! Take care Carol love Bridget x
Hi Helen your answer made me laugh That would be just the thing to happen to me too !Or I would spend a whole day out before realising it was on back to front or upside down!! Just e-mail me your address and I will knit your hat , at least it will help keep warm As for body hair Wendy I didnt have to shave my legs for over a year the first time and second but steroids no longer seem to work that way unfortunately!! Mind you I was very surprised not to lose my eyelashes at all!! Keep on keeping on girls you are just a small step away from being able to put mm to the back of your minds for a very long time I hope so it really will be worth all the hassle love Bridget x
Hi Jo , Dai and Elizabeth thankyou for your kind words .Dai of course you can have a Bridget beanie but no contribution please this is my small gift to my online friends in just the same way you give us your beautiful words and music Its a joy to me to be able to make something people like and who better to make for than good friends .I have still got this wretched cold but I will begin by getting the right yarn just for you Dont forget to e-mail me your address though. Elizabeth of course I dont mind at all that you were able to pass the other hat on I hope it helps your friend a little. Off to get my clickety clicks ready now lots of love Bridget x
Hi Dai and may you be a happy bunny for a very long time to come love Bridget x
Hi Graham welcome Can I just say if you are young of heart and mind they laet you into the under 50 group , this is from me a 56 yr old who joined ! Seriously there may be relevant work or lifistyle issues better suited to the under 50sif so just let Scotty or Phil know your e-mail address This site is brilliant too , so many lovely people to support you whether you are a patient , carer , sibling or child Its not all gloom and doom either good news and even a healthy dose of silly humour all goes down well Take care and look forward to your post Bridget x
Hi Helen and Debs I love to hear how well you are both doing and you are so right it is day by day , sometimes hour by hour ! Helen it must make you feel much better now your mouth doesnt hurt so much, nothing makes me feel so wretched even a single cold sore !! I have lost my hair 3 times now and I knew from the outset I was too untidy for a wig ,instead I wear hats scarves and frequently nothing on my head As Debs says people are very kind and they dont stare anymore than they do when you wear hats or scarves! If you would like one of my knitted hats just e-mail me your address and any colour prefernces , cant do exact colours but will try Theres no charge by the way , sorry but havent beeb very with it lately otherwise I would have mentioned it sooner( my e-mail is bridget.rochfort@btinternet.com,( dont forget your postcode) Debs it might be a bit slow growing but just wait once it starts it will grow like wild-fire Almost there girls and it will be so worth it love Bridget xx
Hi Alex I am on my 7th cycle of Revlimid and exhaustion has been a constant throughout It seems to be a very common problem too!! All I can say really is go with the flow and when John feels he needs to rest then thats just what he needs to do It didnt take me long after being diagnosed to realise that there is no choice but to listen to my body and rest when I have to A few times when I pushed myself to the limit , mainly through frustration , I paid the price afterwards so lesson learnt!! I hope you get some answers regarding the anaemia soon , it must be very frustrating Take care and I hope John feels a bit better soon Bridget
Hi Gill I am glad Stephen has got a date at last ,it seems ages since you first mentioned his lump As for the full diary what social butterflies we are!! Thanks for the reminder about the flu jab I am hopeless at booking them so have now left myself notes around the house , like thats going to work!! Take care and good luck for the op Bridget x
