My hubby has finally been told he has MM not prostate/mets to bone after 15 months so wrong treatment all thst time!
To say I am angry, frustrated, annoyed by the Consultant in Urology is an understatement.
All along I kept saying that he was not getting any better with the treatment it wasn't until I wrote to PALS that things started to happen.
Everything I said was right - why do they not listen - there is no joined up thinking. He didn't see oncology until they found a cord compression after not reporting on an MRI 3 months after it was taken.
Oncology listened but this was after my communication to PALS.
Seems they have changed their protocols now so hopefully no one else goes through this.
My question now is what impact the delay has on my hubby.
I'm guessing that it would have had a better outcome if the treatment had started when only 3 bones were involved not 10 different bones - he never ever had a positive prosyrate cancer biopsy - the Urologist lost my respect for not listening when I questioned things.
My hubby can hardly walk, sleeps and rests a lot, eats little, has lost muscle tone due to injections he had for prostate cancer, they has said they are 99.9% sure he doesn't have prostate cancer and hopefully he has had his last injection now.
Its a wonder he doesn't glow in the dark with all the xrays,, CT, MRI and drugs he has had!
I am hoping his current chemo helps but I' not sure the time span they have given him is realistic considering everything.
Just getting ready for Chemo now!
Hi London Lass and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about your husband’s diagnosis and the challenges you have been dealing with.
I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but for some context I was diagnosed way back in 1999 at 43 with a very rare, incurable but treatable type of CTCL - NHL Low-grade non-Hodgkin lymphoma ……. eventually reaching Stage 4a in late 2013 when a second, also rare type of aggressive PTCL - NOS NHL was then presenting so although my blood cancer ‘type’ is different I do appreciate the challenges of this journey rather well although I have no answer for your question about what impact the delay has had on my hubby.
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.
You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
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.
