Hi Eve.
Im so pleased to hear that Slim is finally making progress…:-) You will have him home soon, and be able to get on with your life again.
I was in your place, some time ago and had not found this site at that time but I know I would have given my eye teeth to be able to hear something positive from others who had been thru the…[Read more]

Dear Susan I am so sad to hear Kevin has gone, my thoughts are with you and your family. I can fully understand his decision to have some control over this wretched illness and his bravery does not surprise me one bit . I am sure you have a lifetime of happy memories to get you through the hard times and it was a privelige to have known even a…[Read more]

Dear Tina I am so sad to hear Patrick has gone , your posts allowed us to know him a little and he must have been an amazing man The memories you have of your life together will get you through the dark days hang on to them Lots of love you Bridgetxx

Dear Tina,
I am so sorry to hear the dreadful news of Patricks passing. I know things will be very raw for you at this time and hope that the many happy memories you have of him both before and during this barsteward illness will comfort you at this awful time. My sympathies to you and your family.
You are in my thoughts
Love MIn

Hi Mavis thank you for your lovely kind words where would I be without you all !! I had a phone call today but the radiologists report of my mri wasnt ready Apparently they are going to discuss me in the team meeting on Monday though so fingers crossed Today I had to go to UCH to check out the swelling on my leg It wasnt a clot but they think it…[Read more]

Dear Lorraine of course you should offload sometimes and where better than here , we all understand what you are going through! As for the pains in your arms etc one of my problems with Rev has been the weekly cycle of absolute agony in my arms as well as everywhere else .I think in my case it is the Rev but whether it affects me more because I…[Read more]

Hi Marian I can see you have already been given lots of good advice and I cant add much except to say it will all make sense soon Far better they take their time getting all the right information to treat your dad so that his treatment will be just right for him and worth the wait Good luck to your dad and dont forget we are all here when you need…[Read more]

Hi Lorraine Just wanted to let you know, my husbands on Revlimid and has been for been for the last 18months, last August or there abouts he became so exhausted that he had a treatment holiday for 3 months, it did him the world of good and has tolerated it much better since,

Take care
Sue x

Hi Eve
How is Slim today? any good news to tell us. Forgot to tell you my man had lost 4and a half stone and shrunk by 4 inches since the beginning of this god dam n awful journey.
I lost a stone in weight and lost my mind with worry. I have put it back on but the minds lost in the wilderness if I could only remember why I climb the stairs…[Read more]

Hi Marian,
There is just so much to take in at these consultations and it does not help if the Dr doesn't make an effort to ensure you understand them. But don't worry there is lots of information on this site. Download the info guides and read what you can. Not much of it will make sense to you at this stage but as time goes on and he gets into…[Read more]

I am with you Dai, I often wish Peter had not been put thru the SCT part, as he was doing so well on the CDT.
To be made so ill, by the SCT with no guarantees of how long it will work if at all. (Particularly in my husbands case when he only got 5 months) I frequently wonder if he would have had a better outcome on a very low dose of of CDT…[Read more]

Dear Eve
Your slim problems sound so familiar I could be reading Peters record. He always looks well too when he is 'more ill'
I know your worried about blood clots on lungs but Peter got them when on velcade he had so many of them they could not count them. He was puffing like an old man running a marathon. So breathless that I was more…[Read more]

HiBridget
I know nothing about cystic fibrosis except a friend who has a very good friend who has had a transplant, he took her to London for a short break and it was the 1st time she had been that far away from her hospital. He said he was terrified for her. So I cant imagine how your life has been. But sounds as if your daughter lives life to…[Read more]

Hi Eve,
Cant imagine who you have offended, but don't worry I it was not me!
I hope things are improving for slim and you too of course. How is he and how are you coping. Its a long day at hospitals and very tiring for both patient and loved ones. I think you must be done in by now and praying slim gets home soon so you can have a 'rest' Keep…[Read more]

Hi Fi sorry you are in the position of needing to join us but welcome Myeloma is such an individual illness it would be nearly impossible to guess whats going on with your dad as it needs the whole range of results rather than just paraprotein There is an excellent helpline on this site where medically trained people will be able to give you…[Read more]

Hi Roz thankyou I do feel much more positive that was just one of those nights when the pain got too much and ended up in dark thoughts I am sure we all have those nights !! Mri today and hopefully have results by the end of the week Mind you the pain has been gone since I took my steroid dose so maybe it wont come back! I hope you have a good…[Read more]

Morning Eve away with the blubells sounds good to me !!Cant think of anywhere nicer in fact As for the offense dont worry we have all done it I am sure and it was probably a minor thing How was Slim last night? Are you able to get any rest? Try and take a little time to recharge your batteries away from the hospital its exhausting visiting anyone…[Read more]

Hi Jean nothing wrong with being a nutcase !! sorry poor humour sounds like counselling was really helpful for you Myeloma affects so many people not just the patient , my poor mum is not the same person since I got mm and she worries so much it affects her health too Snap I have an mri tomorrow too , I hate them !!Pain has disappeared since…[Read more]

Hi Min I know what you mean individually the side-effects sometimes seem not worth a mention but as a total they dont make for a happy life. Peter seems to have been very unlucky as far as his diarrhoea , that must be so depressing. I am at the point where the endless chemo in one form or another can get me down , in almost 5 years I have only…[Read more]