Myeloma

Hello, my name is Jackie I am 62 married with a daughter two grandsons and my gorgeous chocolate Labrador Reggie. I was diagnosed with smouldering Myeloma 5 years ago, March 23rd 2020 I received a phone call from my Consultant to say that the Myeloma was now active and I needed to start treatment asap. Great a world Pandemic plus a national lo known and my disease decided to activate right then, so everything became a gazillion times harder in the space of a day. By that I mean I needed a tooth out before I could start treatment, it took 3 weeks of phone call being passed from A to B to C and then back to A again. Finally it took me threatening to go to the press to have one simple tooth removed, the dentists were lovely once every form known to man was crossed an I dotted.

Not a good start made worse by my lovely kind Consultant retiring and a series of Consultants keeping an eye on us. I trusted the previous Consultant I didn't mind some of the stand ins, unfortunately the person who became my new Consultant immediately concerned me when he couldn't answer a basic question and clearly hadn't read any of my note. I'm very lucky to have had wonderful support from the specialist nurses and the team of staff on the haematology unit. Five cycles of chemo and I was ready for a stem cell transplant, Covid stepped in and it was delayed by 3 months ( I'm in no way complaining about this as I feel very fortunate to have received treatment and blessed that chemo side effects were minimal.) I now have to confess that I am a retired nurse, I have chosen not to read or research anything about Myeloma, I would drive myself and every one around me mad. I have told anyone that will listen that I'm in denial and very happy to remain there, I comply 100% to any requests or advice, I ask direct questions about anything I need to know. This has worked for me until now......next week I'm going to have a stem cell transplant, denial at this time doesn't work. I'm a little anxious about the procedure or rather the side effects of being chemically nuked prior to the transplant. I'm aware that for a week or so it's going to be unpleasant to rotten, again I'm anxious but I trust the team looking after me. The thing that bothers me most is that I'm going to be 140ish miles from home and my lovely family, Covid means no visiting which is right and proper, it's too much for them to drive just to save to me through a window. So for now four sleeps away from admission I'm reminding myself that I'm doing this so that I can be with them longer and hopefully watch my grandsons grow up, my daughter blossom and my younger husband retire.

I guess I'm writing this here to make it real and to say thank you to the health professionals for looking after me while ducking and diving the impossible strains of the pandemic. I'm not fearful because I know what is going to happen and why, but sometimes I feel incredibly lonely Myeloma like most blood cancers is a silent assassin, no lumps or bumps or scars can be seen to be honest I look perfectly healthy, but the exhaustion is a killer and the fact that on the unit I go for treatment I am in the very small minority at the moment a club of one "me ". It is a smallish town and I sometimes feel that I'm doing this journey alone. That is the only negative so I'm very lucky.

Good luck and keep safe to all you lovely people on your own journeys with which ever cancer you have. With love Jackie