7:23 in a hospital bed, a few days past diagnosis

Hi GroguLove and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about 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 Non Hodgkin’s Lymphoma (Stage 4 in late 2013) so although my Blood Cancer ‘type’ is rather different I do appreciate the challenges of living with an incurable blood cancer.

Over my years my running total of seeing 7.23am in a hospital bed is at 130…… being an inpatient can be challenging as there are so many dynamics happening and your experiences with various parts of our stretched NHS system is unfortunately not that unusual…,.. the main things are just double check what meds you are getting. I always asked the nurse team to tell me as I knew exactly what I should be getting….. and yes there has been a few occasions where I had to highlight issues……. the second thing is just keep remembering that you will get our and this is temporary.

There are a few active members at the moment so let’s look for them to pick up on your post. Do 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 00where 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.

Hi Grogulove,

so sorry to hear of your situation, I have MM which was diagnosed in June this year, I so far consider myself to be a lucky one as apart from one small lesion on my spine was caught in time before anymore damage. I had went through 4 months on a RADAR Trial which regretfully failed me and now on DVD treatment, again I have been lucky with the drugs apart from the first course not working for me with very minor issues although the steroids are something else, have been up since 3am after two 40mg doses of the bad boys yesterday and wednesday.

Had an issue getting a blood transfusion last week and ended up with three bags on Wednesday as an outpatient between the blood and chemo i was in the macmillan suite for 7 hours.

I feel the same with the brave thing, always tried to protect and look after my family and feel pretty useless but if you have an understanding family it is a great feeling. Positivity comes through time and you may find it helpful to reach out to Macmillan/Bupa for some councelling which I have used and since my trial failure have sought more help from my local Maggies Centre which because of the closeness to my hospital is great for popping in for a tea and blether with fellow cancer sufferers and the staff who are brilliant. They will also look after family and friends to provide everyone with the support your family shall require.

Never be afraid to ask any questions on here, Maggies or Myeloma UK, there is no stupid questions and occassionally i find a good rant does me the world of good.

I hope my words have helped a tiny bit, it is a horrible disease but together we can fight it.

Wishing you and your family well.

Alamo

Hi  GroguLove,    it  sounds a bit of a    balls up,     have you been having the   course of  DVTD       ?         you will certainly not be a nuisance to any of the staff,  i am sure,      Steroids  as you know work very fast,  but can make you  a little, let me  say   verbal   i did to me,     and my wife called me potty mouth   more than  once !     Depression  in our state ( i am also  MM  like Alamo )   since June,   with lesion on my hip,  and pain,         are they also giving you  other meds to take at home?      i was taking     some   range of  Aclivor,     Apaxiban,  blood thinners,  and  others for  preventive care,   cold sores,   anti biotic etc,          at home i am sure you will    try and get your mental health back  and  please accept the  help   given to you,    us Males    who tend to want to be the " providers"  for our families   suffer  when we feel  we can no longer do the things    we took for granted,      once the treatment plan as an out patient  kicks in,  i think  in the cycles you will see the   future   is good,    i am on the verge of SCT  for   2024  after 4 cycles,    of treatment,    Words are not enough i know but    others  are here to   to listen,  to help,      you are never Alone    Kevin  ( Vespa ) 

Thank you for your replies. I am in a bit of a better place mentally now, was in hospital till the 13th of December and at last am home.  I'm all signed up for a medical trial in Cardiff, which sounds very promising, and that all kicks off properly half way into January. What I can't get my head around is how I was walking about with a broken vertebrae, not only that, they said both my shoulders are fractured too :/  I've been told the lesions are throughout and yet there I was just going about my life with no idea. This cancer is scary.  As for mention of being a potty mouth? Yes! 100% yes. I turned so sweary and aggressive after having the steroids!!!  Thankfully no one took offence, I did the very British thing and warned people of my bad language should they want me to move and it causes pain.  Right now all I am on is pregabalin, prednisone, tramadol, and the occasional oramorph, not to mention the pills for my other conditions.  I still feel lost in all of this, but I have been assured I'll find my way as appointments kick in.  Really appreciate your responses, here is to healthier days and hope for the future.

Glad you are getting the help you need now. Not had the language but have been pretty grumpy and regretfully it is only my good lady that sees it as I am not around many people these days.

Wishing you well with your trial.

Try and have a good christmas and new year.

Stephen