[brochoParticipant]

Hi Dai your tour sounds wonderful if a little exhausting maybe , pace yourself But how lucky to be able to race your ancestors I am so jealous coming from anglo -irish- french- stock makes it tough to find mine Hope you both have a lovely trip and leave all thoughts of mm at home love Bridget x

[brochoParticipant]

Hi Dai your garden sounds lovely ,more power to Janet clever lady. I used to love pottering around after work just watering and dead-heading, cleadred my head from the horrors of work , they are such healing places in all sortts of ways arent they? Good luck for your ct on Thursday I will cross fingers toes that it shows a big fat zero love Bridget x

[brochoParticipant]

Hi Eve yes I know I will love it when its done the council are doing it so its not high spec but it will do me just fine and all tiled and decorated is a big weight off my mind . I think the cleaning firm is a great idea , your time is taken up with hospitals so you should definitely treat yourself , I might do the same !! My daughters think life is too short to spend cleaning too , the youngest ( who has cystic fibrosis) hasnt got the energy a lot of the time but she is also a slob by nature!! Heres to more sunshine tomorrow makes all the difference when you have been ill to do something nice like the beach love to you both Bridget x

[brochoParticipant]

Hi Marian thnk you for letting us know how you got on As you say the worst is over now, it does take time for it to sink in but as your family see how your dad gets his treatment and copes with it things become less dramatic and urgent Life does become normal again , slightly different but you find a way to live with myeloma I ts brilliant tha you are clued up on things I am sure that will be a great help to your dad. My advice to him is listen to your body and dont try and do everything just because you used to Depending which drugs he is on , steroids especially his sense of taste might alter which is really annoying but as long as he eats even if it is a bit bizarre to crave ice lollies in December like I did!!Great news about his bone scan at least he wont have to deal with a lot of pain There are several people on here with kidney damage, Jo and Mins husban Peter who I am sure will be able to give you good advice Good luck to your dad and dont forget we are here if you need us for advice or to let off steam !!Make sure you get plenty of time doing nice things too love Bridget x

[brochoParticipant]

Hi Min like Peter I am now over 3 inches shorter than I used to be my remission lasted 18 months , which is not a very long one but neither is a very short one . It is an interesting thought though I have not seen anything to suggest spinal damage might affect remission time Hopefully you will get lots of answers which give an overall picture love Bridget x

[brochoParticipant]

Hi Carol welcome to our happy little band , I am sure you will get lots of replies. Bone pain is very common and doesnt necessarily go after an sct . Your consutant doesnt sound very helpful perhaps if you had a chat with the specialist nurse and rxplained how difficult it makes life being in constant pain . I have extensive bone damage and the first question my doctor asks at clinic is how my pain is . I have been on slow release morphine tablets since 2007 and recently changed to Oxycodene . I hope you get some relief soon its awful they have not been very helpful so far but no-one should have to live with constant pain . Let us know how you get on Best wishes Bridget

[brochoParticipant]

Hi Dai I think you are very disciplined really , they say we all have a book in us but very few people actually do write one !! I love your outline and I am looking forward to reading it Happy writing!! love Bridget x

[brochoParticipant]

Hi Angelina blimey you must both have been exhausted come the morning!! It must be scary to see your husband like that . I think it must be due to the meds, as you said he takes a lot of medication and who knows how they interact with each other. I do have very vivid dreams , sometimes it can seem ages when I wake up working out what is real . I very occasionally get the twitchy legs , although I think the last time was several months ago, which sometimes wake me , I suppose the doctors dont see it as a problem if it is fairly common but if it is bothering you perhaps you need to be a bit pushy with them about looking at his meds and how well they work together Hope you can get it sorted soon love Bridget x

[brochoParticipant]

Dear Min I had to read your post twice as it didnt seem possible that this wretched myeloma could kick you in the teeth like that Thank goodness though they were able to pick it up fairly quickly and come up with a strong plan to knock it right back. I feel for Peter , the thought of having to go through all that must be hard to contemplateThe big thing you have in his favour though is that Peter is a fighter and also he has you to fight it with him, together you will get him through it Hopefully after all that Peter will get a decent time in remissionand you can do all the things you want to lots of love Bridget x

[brochoParticipant]

H i Alistair I am also under Dr Yongs team at UCH London and they are excellent Not only is Dr Yong good but the whole team are and they have regular meetings to discuss treatment plans , bringing in other professionals when needed , for example an orthopaedic surgeon to suggest a way to ease my back pain The hospital itself is very new and spotlessNext spring a brand new cancer centre is opening , all treatments ,scans, x-rays etc all under one roof It will also have a PET scanner , which will be the first in a uk nhs hospital Good luck with whatever you decide Bridget

[brochoParticipant]

Hi Kathleen thankyou always helps to know how other people get on with drugs . I am going to start mine tomorrow when I dont need to drive just in case the first one makes me drowsy ! love Bridget x

[brochoParticipant]

Hi Da thankyou so much it was a privelige to be able to read your work . It certainly got me hooked and I will be first in the queue to read the finished version. How do you discipline yourself to wrte or do you just write when the mood is upon you? love Bridget x

[brochoParticipant]

Hi Jo thankyou I know what you mean about dreading the changes in our GP systems I dont think they will be able to cope either Did you get a newsletter about the new cancer centre at UCH? It looks brilliant , especially having scan , x-ray and pharmacy all in the same building as treatment ! I cant wait for it to open love Bridget x

[brochoParticipant]

Hi Roberta lovely to hear you are feeling well and back at work. I can understand how those selfish family members have made you feel but I agree with the others let them go !You and your husband have earned the right to enjoy life now after having been through so much recently Put your energy into what you want to do not what you feel obliged to !! Never apologise for letting off steam on here we all do from time to time and we are all only to glad to be here for you love Bridget x

[brochoParticipant]

Dear Min I can only imagine how you must both be feeling , this bloody illness keeps throwing up new challenges. Jos point was a good one they may well go back to something that worked well before If not perhaps they will try Pomaldomide ( not sure on the spelling ) , the drug that Gaye is on at the moment You and Peter have come up against so much recently Min and got through it with your determination and sheer guts so hang in there you can do it again ! Hope you can get some rest tonight ,tomorrow is another day and perhaps you can get some answers lots of love to you both Bridget x

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