Newly diagnosed

Hi Alamo57and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about your Myeloma diagnosis.

I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed way back in 1999 with a very rare (also incurable) but treatable type of Lymphoma (Stage 4 in late 2013) so although my Blood Cancer ‘type’ is rather different I do appreciate the challenges of this journey well.

Let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not click on the main ‘Myeloma Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat where you will find one of team there to help you out. We also have our Ask an Expert section but do allow a few working days for a reply.

For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups, the one I attend does have a few folks with Myeloma in it so worth checking.

Always around to help more or just to chat.

Many thanks for your reply Highlander,

This was a bolt out of the blue for me as I am sure it is for all. It has still not sunk in and I am sure it will sooner or later.

This is now my third week since diagnosis, had a bone marrow biopsy 2 weeks ago, some of the results from that were back which confirmed the diagnoses. Waiting for scan still but treatment is planned to commence two weeks today or tomorrow. Not one for showing fear but have to be honest I am terrified not just of the disease but the treatment.

Had to call macmillan last week as I felt a sudden feeling of anxiety, fantastic lady I spoke to.

When I seen consultant this week he really put me at ease for the first time of the treatment. My friends, family and colleagues have been great. I have been into maggies and what fantastic people and place.

Again thankyou for welcome and wishing you well.

Alamo57

Good morning Alamo57 the first initial diagnosis starts off a storm between the ears but once you get to understand the condition and talk with others the storm will start to calm down.

I see you have put up a post about your employment and the risks to your health. This us one of the many hurdles that need to be negotiated on the journey - let’s see if you get some helpful reply’s.

I had the same noise between my ears over 24 years ago and this was before Google was available to help connect me with other people…… and do some reading up…… although Google now gives a 1000 answers and only a few are accurate.

My type of blood cancer is very rare with only 7 in a Million diagnosed every year in the UK and it took over 17 years before I actually meet someone with the same condition.

But I have navigated the journey (see my story through the link below) and even although I was 44 when first diagnosed I turned 67 last Nov and I am still living a great life

Again many thanks, work to me is everything which is why before I knew about all this I had asked my employer if he minded if I stay on another few years, he and our manager was delighted. Then on my 66th birthday got a message from haematology and the bubble burst.

I do understand about the work thing….. I had a great teaching job in further education and loved it but eventually the pressures and the working environment (infection risks) started to have an effect on me so I retired at 55….. little did I know that I would become basically a full time NHS patient for about 3 years…… in the end everything is about the greater good - our health and wellbeing.