Hi

i just feel like I am the only woman I know who has this! I thought maybe try a forum must be someone out there knowing what I'm going through and to be able to talk to someone other than Consultants and Nurses which are great for the medical side but living with it as a single mum who is very scared and struggling they don't quite get.

This started in December 2018 I had a tiny lump on my clavicle.. I had lost 7 ish stone so was feeling bones, collarbones that had been well padded out. After having the gastric sleeve in 2017. I showed my mum she's like don't think it's near the breast keep  an eye in it. Then I worked as a housemaid in a Mansion and was struggling to work my way round my back felt like it was breaking in half ( it was!) I was in and out of doctors, hospital. I think they thought I was a junkie as morphine didn't touch the pain! I went to get my lump looked at, then fell very ill waiting on biopsy result and ended up in a&e over Easter 2019. They said I had overdosed on calcium very high levels very dangerous has it's own fancy word. I was on extra after having Gastric Sleeve but literally two tablets a day! So they blamed an over use of calcium! Was not sure why the pain was out of this world nothing touched it! Then I got the Doctor dropped in on my ward saying pretty sure 95% you have Multiple Myeloma,!?! What ?? A blood cancer wtf.. i was 43 years old white woman! Told it was a African, male, 60+ disease.. ok!! In white, woman and 43... but we are waiting on the results.. had a pain doctor see me put me on Gabapentin the best I had felt in months! Still in pain but less.. Got the diagnosis.,bang nurse specialists, consultants, pain doctors, physio's everyone talking at me, signing papers, giving phone numbers. I must say it didn't really go in. I had been in and out of hospital, pneumonia, sepsis.. then  fractured more back bones had more  X-ray/ ct scan/Mri. 6 or 7 in total fractured a sneeze broke two I remember, fell off toilet in hospital was another then the others just went, 2 in my neck and apparently too many to count in my ribs.. Then it gets better they collapse in my back.. More pain that nothing helped! Lost my mobility, ability to walk, get up to go to the toilet! Get dressed! I was living with my mum and daughter in her 2 bed bungalow in her dining room was now my hospital bed and daughter slept next to me on mattresses. For 8 months..10 years old my daughter was. Didn't see no physio for 6 weeks by that time i could get up walk with a Walker to the loo, get dressed by my mum or daughter! Anywhere was in a wheelchair! So they came helped me move my arms! Oh great doing brilliant 3 more times then said nothing more we can do! So walked with walker any small distances. Didn't go anywhere other than hospital for chemo. When I was diagnosed in May 2019 my 'light chains' were 4000+.. to show where I went to December 2020 I was at 27..... I had stopped having Iv chemo was tablet based for a good year. Then feb & March this year it's started to rise think last count was 100. They said it's stopped working need new treatment! Think the name Lenalidomide and Pomaidlide sorry late terrible speller, plus steriods- dexsothemene?! So back on IV said could be 7 hours as needs to go in slow as of possible bad reactions. Weekly for 8 weeks. Fortnightly for another amount of time then monthly! Till I don't know. I have  the top consultant calling me Wednesday to discuss, dates, times, pick lines... scared beyond my wits.. not ever had one scares me, But have only one arm for blood/canula that is not ruined so no chance they will be able to cannula me weekly! Any info on these things please. If anyone on this stage. It's after 2 or 3 different medications that you can only get funded for this.  So to say I'm scared, worried about having to go back in hospital a lot, new side effects new issues! When i still need to be a mum to my daughter who suffers with anxiety/depression she's seen and witnessed so much and I worry for her mental health. As COVID has knocked us all sideways!! I am having second jab Friday. Oxford vaccine I had side effects of that were not nice first time, but looks like new treatment will be beginning of May. So have a few weeks to get better. I have seemed to rambled but wanted to just get my story out there.. I am now classed as disabled from the back fractures collapsing I lost 6" in height. I was 5ft 8 - 5ft 2 devastated struggle being short, terrible mobility, and still fighting this Myeloma. I just want a break from this but then there are worse off than me then get angry with myself moaning, but mentally and physically I'm done, but I can't I have my daughter my world.. my mum I have to fight on. Sorry for rambling.. I don't like to read everyone's pain but is a slight relief to see/hear others it's just not me.  I'd love to hear from anyone. Di x