[brochoParticipant]

Hi tmc? as Helen said you are not burdening anyone we are all here for each other and most of us will need to let it out sometimes . I can understand a little of how you feel as since my diagnosis 5 and a half years ago I have been on every possible treatment since my sct All have failed to work for more than the shortest time and now I have no options left , unlike you I wont be eligible for a trial as I am a non-secretor and therefore useless for trial purposes as they would be unable to measure progress What I cant understand is them stopping or not sorting out your pain medication Has radiotherapy been suggested for pain relief? To have to live with constant pain is a miserable life , take 160mg Oxycontin slow release morphine twice a day and Severadoil or liquid Oxycontin for breakthrough pain Luckily my doctors always check my pain and sort it out regardless of trial protocols. I hope you get some positive news very soon waiting is so hard isnt it. Stay strong and come on here when you need to there are so many lovely people who understand what you are going through and would like to help love Bridget ps please tell us your name it feels rude to call you tmc

[brochoParticipant]

Hi Andy good luck for Tuesday hope you dont have too many side-effects love Bridget x

[brochoParticipant]

Hi Debs thankyou and please dont be sorry for not seeing the post I have seen your facebook posts and its great to see you are getting back in the swing of things and feeling beeter than a few months ago So I am glad that you havent got time to come on here You are doing amazingly with your ball preparations I am totally in awe as I wouldnt know where or how to begin to plan such a huge event! I just know it will be a huge success Stay well Debs lots of love Bridget x

[brochoParticipant]

Hi Zoe I am so sorry you and Dan are having to go through the nightmare that a diagnosis of myeloma brings especially as he is so young, I was 52 and still felt it was too young to have cancer It is a rollercoaster in the beginning because its all foreign even the words used sound strange but it will get easier I promise As Dans treatment gets going you will both get to know a lot more about his treatment and stuff in general If you feel everything is whizzing past you ask them to give you some time to make decisions a day or even a few hours wont hurt and it will help you feel more in control If Dan has a specialist nurse have a chat to him/her about your fears and any questions they are great and sometimes easier than doctors to talk to and they will be only to pleased to help.When I was diagnosed the scans and skeletal survey showed there was 90% bone damage throughout my body , although I have not had any tumours on my skull I have lots of craters, they call it pepper pot skull, which havent caused me any particular problems , so hopefully they will get rid of the tumours and he wont have any more problems Dan has the advantage of being young and probably fitter than someone older to help him beat this thing , try and keep that in mind. Do you have family or friends near you who can help? Sometimes just being able to sit and have a chat with someone can help a lot Take any offers of help that come your way to make life a bit easier too Ask if you can be referred to Macmillan for support too , they are brilliant and will able to give you good advice on claiming benefits if you need to and also Blue Badges for car parking if Dan finds getting around difficult For now Zoe try and take one day at a time , dont worry about what will happen down the line just yet you have so much on your plate so give yourself a break for now Hang in there Zoe it will get easier and we are all here for you when you need us , even if its just to get things off your chest( sometimes a good moan works wonders!!) Make sure you are looking after yourself too , get some rest and try and eat I know its hard when you are worried but you need to stay strong for both of you lots of love Bridget My e-mail is bridget.rochfort@btinternet.com if you ever want to ask me anything

[brochoParticipant]

Dear Nicola I am so sorry it seems so unfair that you are going to lose him to this rotten illness after swuch a short time. I hope you can get him home but if you cant he will have the most important people in his life with him and will know how how much he is loved Your dad will never leave you , he will always be in your heart , wherever you are love Bridget x

[brochoParticipant]

Hi Tina we are in a similiar position I also have a tumour on my spine which is very close to causing spinal compression Because I have already had radiotherapy on that site I was only able to have one dose this time . So back on Dex and hoping it keeps it at bay Hope the pain gets sorted soon, make sure they know how bad it is love Bridget x

[brochoParticipant]

Hi Andy sorry Velcade didnt do the trick hopefully DT Pace will . I had this a few years ago and its fine whilst you are having it but watch out when you get home it can knock you for six!! You will need to check your temperature regularly as it can set off an infection which needs very prompt treatment Fingers crossed it will be fine for you , I was unlucky and ended up with pneumonia and in hospital for almost a week Even if your temp is fine let them know if you get rigors ( shaking and feeling very cold ) as this is a sign of infection too Good luck love Bridget x

[brochoParticipant]

Hi Paul glad you got hold of someone at last and I hope it gets sorted quickly for you love Bridget x

[brochoParticipant]

Hi Nicola sorry to hear Velcade didnt work for your dad but as Keith said you never can tell Its very possible that Revlimid will work for him even though Velcade didnt Hang in there hopefully he will start to improve with a new treatment plan Dont forget we are here if you need us love Bridget x

[brochoParticipant]

Dear Mavis so sad to hear you need to start treatment but hopefully CDT will knock the little blighter back !! I remember feeling exhausted and very weak after the first 2 cycles One bit of advice dont force yourself to do things because you feel you should be able to do them , rest when your body tells you . I didnt lose my hair either One of the most annoying things was altered taste which can change from one day to the next so you might be better eating little and often , eat whatever you fancy Good luck Mavis we are all with you love Bridget x

[brochoParticipant]

Hi Paul some hospitals have Macmillan advice centres based there pop in and see them If not ask your specialist nurse to refer you to Macmillan for help with benefits Someone will come and see you at home and go through it all with you . I think your GP could also refer you . Let us know how you get on . You will get backdated payments too which is handy ,I think its backdated for 3 months Love Bridget

[brochoParticipant]

Hi Paul I am sure you arent the only one to delay filling in those forms. I was like it too at first My advice is to get a Macmillan benefits advisor to help check your entitlement and fill in the forms with you If Macmillan arent avaialable try the hospital social worker Good luck love Bridget x

[brochoParticipant]

Hi Keith thankyou for the info but I did get a laptop , no patience at all !! In the end I got a decent one in the sale at PC World It was advertised at £520 before the sale and reduced to £310 Whilst I dont believe their pre-sdale price was that high I have seen the same one for over £400 so am quite pleased It does everything I need it to and I can add to the memory if needed .I was going nuts without a laptop which is ironic as before mm I was a total technophobe and moaned like mad about having to write reports for work on a computer!! So myeloma has done me some good Hope you are staying well love Bridget

[brochoParticipant]

Hi Chris great to hear things are going well Congratulations for your wedding, at least you should have some sunshine , you are so right it really helps to have something good to look forward to. Good luck wth the insurance company the older I get the more I think they are a bunch of crooks!! Stay well and happy Bridget

[brochoParticipant]

Dear Jo I am sorry your dad lost his fight against this horrible illness No wonder you are all in shock but stay strong and together you will get through it Remember all the good times , your dad will always be with in your memories Bridget

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