Hi,
I remember being in your situation last year and I hope I can reassure you by saying that the anxiety that you are experiencing now is far worse than the reality. I would recommend taking someone to the appt with you as it’s hard to take everything in. My consultant was very positive and talked about how treatable myeloma is nowadays. She then…[Read more]

Hi Rosie,

I’m so sorry for your loss. The picture is beautiful – he looks so well in it. Hope you and the children can keep strong and keep memories of special times alive. He lives on in your hearts and your memories. God bless you all.x

Well done Helen. I think that this also illustrates that we can’t blindly assume that Doctors are completely up to date with everything -nowadays, we can be better or equally informed.

I am so sorry Graham- sounds like a bloody nightmare which is the last thing that you need when you are in pain and therefore vulnerable. I’m afraid that it just shows that we can’t have blind faith in the medics but always have to question, query and even make suggestions- which is so wrong but necessary. Is it possible for someone to attend…[Read more]

I think that you thoroughly deserve the TV John! Glad to hear that the Velcade is working.x

Hello Noel,

I wish you well – fingers crossed for a positive outcome.

Hi Tony,

I haven’t had treatment since being diagnosed as smouldering a year ago. The skeletal x-ray didn’t show lytic lesions and I haven’t experienced any complications so I think this is why they haven’t gone down that route instead. My pp level was 20 when I was first diagnosed but my consultant indicated that the rise in the level indicates…[Read more]

Well, with my pp level at 23, I top both of you and am not receiving treatment!! Not that we’re competing… (Excuse me for being facetious but laughing has to be better than crying, right?

I know how you feel..Waiting is agonising but eventually you get used to waiting for results because you have to. I find that it helps to keep busy and fill your days up with activity- no matter how mundane. Bake bread, spring clean, go shopping .. This way, you have less time to think during the day and you’re pretty tired by the time that night…[Read more]

Thank you – much appreciated.

Thank you so much.

Hi,
I had a BMB last year. I played loud music in my IPOD, closed my eyes tight and absorbed myself in the music, singing like a lunatic. I found that this helped me to zone out. While singing to loud reggae musiC, I visualised myself lying on a warm Jamaican beach. I then apologised profusely to the registrar for my loud singing!!

Hi,
So sorry that you have joined our gang. I was diagnosed in October 2013 and still struggle to accept it. I’m smouldering too. There are many upbeat people on the site who help to keep your spirits up – I’m trying to become one of them!x

Hi Rebecca,

I think that we should all throw a party in twenty years time when we’re old and penniless so that we can celebrate poverty! Your optimism is infectious and I’m working hard to be upbeat so thank you. Today, at this present moment, I feel and look healthy. Tomorrow is way off in the future.We all have to distance ourselves from the…[Read more]

Hi Rebecca,
I am relieved to hear that your kidneys r not as bad as I thought. None of us really know what will take us at the end- could b myeloma and its impact or a bus could run us over!! Like you, I recognise that human connection is the most precious thing of all but my faith is a source of peace and comfort for me. I’m not one to throw it…[Read more]

Hi Rebecca, you’re so right – it’s about us taking control of our emotions so that we ‘choose’ to focus on the positive. I’m so sorry that your kidneys are not working- the thought of this saddens me.I guess we have to hold our fist up and shout ‘F.. You Myeloma! -I’m living my life despite your best attempts to wear me down.’ I probably…[Read more]

Hi Rebecca.

Thank you. Your post is inspirational.I have a head v heart thing going on. In my head, I know that I have this thing and seek information but in my heart, I want to run as far away as possible and wait for someone to wake me up from the nightmare -but everybody feels the same.

3 thoughts that calm me are – all humans are mortal so…[Read more]