Dear Sarah if only I could do more than send you my love and a big hug I will be thinking of you.You and Gordon have been so strong together, I am sure your strength and positivity have kept him going as it will now Sarah Hang in there Sarah hopefully that slight improvement today will be an even bigger one tomorrow Love to you both Bridget x
Hi Sharon I am so pleased your consultant was more willing to listen to you. It sounds as if the other doctor was sticking rigidly to the trial protocols rather than adjusting doses for your benefit In my experience of trials the overiding factor is what is best for you as a patient and although the protocols are there there is room for changes when necessary. Try not to worry too much about your pp numbers , they can vary from day to day , but your doctors will look at your overall response to treatment. As for the sct try and put it aside for now and take each day as it comes Whilst the sct isnt exactly a picnic and there are some unpleasant side-effects you can get through it and hopefully be home within a few weeks! It will be worth it in the end and hopefully you will get what we all want complete remission or at the very least a very long period of partial remission without needing any treatment. I am glad you have such good support from your in-laws, mine were brilliant too , and I am sure you and your husband will both find a way to adjust to things and he will become more supportive and you will let him! Good luck and keep in touch love Bridget
Hi Jet good luck for this week I m sure you will be home in record time just hang in there !! Remember not to try and rush things too much , your body needs time to get over it so rest when you need to !! love Bridget x
Hi Dai like Sarah I am blooming well gobsmacked at the date you have been given for a minor procedure that could save your life!! Good luck tomorrow , give them what for! Well at least my local has got a good system for DVTs and when it was thought I had one the scan was immediate even though I was brought in late at night !!Mind you they fall short of gold standard on so many other things!! Great to hear you are feeling better and I hope your appetite continues to improve so you can enjoy the lovely meals Janet conjures up for you love Bridget x
Hi Gill so pleased Stephen is feeling better . I am sure he will soon get his appetite back now he is back home with you looking after him Please make sure you look after yourself too though !! Hows the puppy? I hope she has learnt to perform in the right place now!! love Bridget x
Hi Ivan sorry you have had to join our merry little band but you will find lots of help and support on here even if it is only to have a rant at myeloma and all it brings with it!! You are wise to take your partner in for your consultation , in the beginning there is so much that will be new to you, I often used to ask my husband what had been said regarding one thing or another The good news is it does get easier as your treatment gets underway and the initial shock wears off. I remember only too well feeling that life was going to be awful and full of life or death moments , dashing to hospital every five minutes !!The reality is nowhere near as dramatic thanks to the developments in treatment and all the new drugsplus careful monitoring , any changes are picked up early and treament can begin before any major damage is done As Eliz has said there is every chance you will fit and active for many yearsto come! Of course there are times when treatment can make you feel weak and lousy , the trick is to learn to listen to your body and if you are shattered then rest, there is rarely any chore that cant be put off for another day Good luck and remember there are lots of lovely people on here who are right with you best wishes Bridget
Hi Lara welcome to our site there are lots of people on here only too happy to offer you support and we have a range of experiences from patients to carers, those like your dad just starting treatment and people like me who were diagnosed some time ago , 5 years in my case. I havent been on thalidomide myselfbut I know from others that the best time to take it is very last thing at night Get your dad to tell the nurses about any side-effects , however small as there is usually a solution For nausea there are several drugs to help with it Feeling weak and tired is par for the course during the early days so really the best thing is to rest when your body tells you it needs it Any chores can wait for another day , resting is part of the healing process it doesnt last forever although fatigue is common for all of us you just get used to it Have you had a chat with your dads specialist nurse? He or she would be the best person for advice on how you can help your dad cope Best wishes to you and your dad please let us know how he is getting on Bridget
Dear Gina congratulations for your wedding, and you dont need lots of money to make it the best day of your lives — just each other and your families beside you !! I am appalled that those wretched doctors have allowed your lovely , lively mum to become so poorly when they shou;d have started treament ages ago Its no wonder you are angry , I agree with Jo a change of consultant at the very least As Dr Yong is in charge of the haemotology department perhaps speaking to her would get things moving . I have always found her very approachable and when there has been a problem she goes out of her way to put things right( I take it mum is still at UCH?) Hopefully there wont be any more delays and mum will start to pick up when her treatment kicks in . Please let us know how she gets on next week if you can Hang in there Gina with your support things will get better for not only your mum but you as well Love to you both Bridgetx
Hi Susannah I just want to add my vote for PICC lines they are great!! Quick to insert and as Tina has said painless Also they are completely covered so less risk of infection than with a Hickman. I have had 3 so far and none have given me any problems , so much easier than searching for veins in obscure places I hope the treatment goes well love Bridget x
Hi Min and Eve well still got the legs of a bull elephant !! I do drink lots and try and be as active as possible and I am remembering to elevate my legs when I sit down too .My Macmillan nurse did say that Ferusamide wasnt that good as a diuretic as it causes kidney problems at higher doses , she also said if the problem continued they would admit me for iv diuretics which are a lot more effective , so for now Iwill stick with 20 or 40 mgs !! Last week I had a lovely foot massage at the hospice , although it didnt have much effect on my ankles it felt good anyway .I have got the dose of my pain relief just about right now and that really awful pain has stayed away too So all in all I feel as if I am back to as normal as I can be !!Min I bet you are enjoying planning for your kitchen and despite my whingeing about the dust and mess Iam so pleased with mine Mind you I am a bit obsessive about washing -up not being left for long now, and polishing anything shiny !!Wonder how long that will last!! I hope the back massages give Peter some relief Min , even a short respite from pain can help to make life bearable. Eve I am so jealous I love wooden floors and I am trying to talk Jeff into replacing my old wardrobe for something more modern and less fussy , mind you I do know he will do some lovely draings buy the ingredients and possibly do the first part but then it could be several years before its finished ,so perhaps I will give up on that one!! Well ladies its still summer so hers hoping we can enjoy it without too many hospital trips ! Nearly forgot to mention if you are on DLA then you are entitled to take someone to the cinema with you free of charge , hows that for a bonus !! lots of love Bridget x
Dear SHARON I was in tears reading your post , how awful to have to put up withose side-effects and even worse nobody is listening to you . You are not being unreasonable to want some quality of life whilst on treatment especially as your family is so young . I think if I were in your shoes I would bluntly refuse to take any more Thalidomide , even if you have to go through all the side-effects again and the effect on your family There must be another drug they can try . I think the most worrying aspect is that neither your doctor or specialist nurse is listening to you and how awful life is for you at the moment Try and get an earlier appointment and lay it all out for them , Ithink sometimes we minimise how bad side-effects are (without realising that is what we are doing) for fear of being seen a wimp , which you most definitely are not! .I hope they take notice of your feelings this time but if not perhaps it may be time to question the suitability of this doctor and consider changing to another hospital , if that is a possibility Please post again and let us know how you are , there are so many people on here happy to support you even if it is just to have a rant , dont be too brave and bottle things up !! I hope life gets better for you very soon lots of love Bridget x
Hi Gill I dont know how I missed your post till today but I do hope they have got Stephens infection under control now. Hopefully he will be back home very soon Take care of yourself too Gill love Bridget x
Dear Sarah I hope they can get Gordon sorted out very soon . Fingers and toes crossed for you both lots of love Bridget x he will be using that blue badge before you know it !!xx
Hi Gill I couldnt agree more , on bad days it makes the world of difference to be able to park that little bit closer Whilst I understand how people get upset at misuseof blue badges I do get annoyed when they make judgements on how you lookSometimes I feel like brandishing an x-ray of my bones at them !! Blue Badgers ROCK!!!!
Hi Sarah poor Gordon not much of a break for either of you! Is the damage to his hip due to myeloma or is it steroid damage ? My right hip was destroyed by the huge doses of steroids but thhe hip replacement sorted it out and I have not had any problems with it The Blue badge is easy to apply for , its usually your local council, give them a call to send you a form . You will need 2 passport sized photos, I didnt have to pay anything either I hope Gordon gets home very soon Sarah . Its about time you both had a bit of good fortune fingers , toes and everything else crossed for you both lots of love Bridget x
