Hi Kay I agree with whats already been said , you need to be kinder to your body !! Your determination is incredible but you have been through the most challenging treament and your body does need time to recover If you push yourself too hard now you could delay you recovery rather than speed it up so please listen to your body and rest when you need to It wont take as long as you think before you are fighting fit again love Bridget x
HI Gina its so good to hear from you although I think we would all have understood if you felt unable to post again. You and your family are doing brilliantly as you have all the way through your mums battle with myeloma The memories will get easier with time and there will be more smiles than tears just hang in there. I thought of your mum last week when I was at the clinic. Whilst waiting for my turn in clinic I bumped into the lady who had her Velcade at the same time as your mum Dont know if you ever met Christine , very large girl who is unable to walk and relies on her wheelchair and carers I think its her size rather than myeloma that restricts her mobility She used to love chatting with your mum Happy Eater Gina love Bridget x
Hi Eve and Dai thought I would join your conversation about morphine! Like you Dai I have been on it constantly for 5 years now The dose has increased from the early days as my pain has increased I have always worried about being so reliant on it but Iknow I cannot manage without it . I take 165mg of slow release Oxycontin twice a day, no need for any breakthrough doses unless its a really bad day Every so often I reduce the dose to see if I could manage with less , which never works. So now I have finally accepted its a necessary evil and I am not going to worry about taking it My doctor pointed out last week that what seemed a high dose to me was not that high and I am not a walking zombie He basically told me to stop fretting about it so just for once I will do what I am told !! love Bridget x
Hi Sarah I am so pleased to hear Henry has done so well You must be relieved he got through it so quickly The hard bit is having patience now and learning to rest when your body tells you to Hope Henry gets a verry long remission love Bridget x
Hi Neeli as I read your post I found myself getting angrier by the minute There are several people who have had to wait over a year as has already been said gps are unlikely to see a case of myeloma Thankfully M.M.U.K is working very hard to make gps and other professionals aware of myeloma. I also had to wait over a year for diagnosis , many many visits to doctors and crawling to hospital for pain relief When eventually I was diagnosed I had lost 3 vertebrae and was at immediate risk of paralysis Before any cancer treatment could begin I had to have back reconstruction surgery to put plates and rods to support my spine I also had over 90% bone damagethroughout and waqs very poorly. The first thing they will loookat is pain relief for your dad which will make a world of difference After some initial tests such as a bone marrow biopsy possibly a 24 hour urine test to check his kidneys. Dont be alarmed if it seems to take a while to get results the info they get will give them a complete picture of your dads needs When athey have all the info they will have a team meeting to produce a plan for treatment He will also have a specialist nurse who is often easier to get hold of than the consultant and they will be more than happy to talk with you as well . I think I had better stop as I am rambling a bit , old age !! Please rant away on here as much as you like we all do !! Ask as many questions as you want someone will know The nurses on the info line are great too very knowledgeable Keep in touch and please pass my good wishes to your dad love Bridget x
Hi Dai I am not at all surprised that you and Janet have such a lovely kind ,caring daughter as your compassion and giving nature shine off theses pages You must be so proud . I have never had lofty materialistic ambitions for my children , I raised them to be good people and I am also very proud of their care for others If they had made a forune and it was what they wanted I would be happy for them but its certainly not high on my list of priorities Good luck with fundraiser I am sure you will raise lots of lovely dosh !! loce Bridget x
WooHoo Well done Slim thats the way to do it !! Worth being shattered for . Like you we have quite a journey to the hospital . as you say its cost as well as time so the team at UCH always try and schedule as many tests in one day as they can Although you get home exhausted at least you havent got to face it all again the next day. Well not too long to wait till the next part now I am sure it will go smoothly too , if anyone deserves some good luck its Slim Love to you both Bridget x
Hi David it always makes my day to read a post like yours. Heres to many more posts like it and hopefully they might give you a longer time between clinic appointments Go and enjoy yourselves lots of love Bridget x
Gill you certainly arent the only one !! We all have our way of handling things . I know that if Jeff ever said that I would freak out , yet its ok for me to say it !! love Bridfget x
Hi Paul well we all need to claim what we are entitled to these days, I am still looking for the letter with the name of the scheme on it though!! So pleased you got sorted at least thats one less worry for you and Rachel Scotland sounds good have a great time and post some pics to make us jealous love to you both Bridget x
Hi Kirsty a big welcome to you although this site must be the last place you thought you would need. I am glad you found it though as it will help you get your head around being diagnosed with myeloma Try not to look elsewhere on the internet as a lot of the info is out of date and some of it is just plain scaremongering You must still feel as if it is all happening to someone else I am sure but as Helen said denial is normal we have all been there As your treatment begins , if you need any, it begins to make a bit more sense Although you must be worried about the future try not to look too far ahead though just take it slowly whilst you gather the information you need Have you got a specialist nurse? Try and have a chat with them , sometimes doctors however good arent too hot on explaining things The specialist nurse will be only too happy to put your mind at rest Have you a family or friends to support you, I hope so , dont try and be strong and do it alone we all need support to get us through Well I have waffled on long enough sorry but I am so glad you posted Dont forget to come on here if anything is bothering you , there will always be someone to answer you Take care Kirsty and one day at a time love Bridget x
Hi Dai funnily enough I have been thinking the same thing lately I really miss the chatty lighthearted moments on here This board is brilliant for finding out facts re mm and even more so for support but its so nice to be amongst like minded people and relax too. I probably have been a bit quiet lately si I will get back to normal I think love Bridget x
Hi Eve the media furore is what prompted me to be concerned I find it very disturbing that people can be misled by a few emotive headlines without looking at the facts Hopefully common sense will prevail before things get any worse love to you and Slim Bridget x
Dear Jean I am so sorry your brother has gone From your description he sounds like a lovely man Hang on to a lifetimes memories Jean he will always be a part of you . I hope Alex is able to celebrate her birthday too I hope you can take some comfort that you were able to be with him Jean . lots of love Bridget x
Dear Gill what a bugger!! I really hope it turns out to a minor blip ! Gill having been at the point Stephen is on more than one occasion my advice is dont panic yet ! Stephens doctors will be actively looking for the best possible trerment for him There is radiotherapy as one possible option , longer term there is Bendamustine which although it didnt work for me has been very successful for lots of people. Fingers and toes crossed for you both aqnd hopefully you will be in France before you know it Love to you both Bridget x