[spectralisParticipant]

Oh, and have you noticed no one else seems bothered about our vulnerability?
Travelling in patient transport for three hours with four other patients while undergoing chemo.
Busy cancer clinics with no social distancing.
Social Services treating myeloma and chemotherapy like going through a bad dose of flu.
Your GP huffing and puffing over having to prescribe meds. Especially if they change dosage from time to time.
I could go on…

[spectralisParticipant]

It’s difficult to advise but my fear of infections has reduced as treatment has progressed. I have a particularly aggressive form of myeloma so I’m constantly in and out of treatment.
Before my stem cell transplant last November I had two cycles of DT-PACE after my first relapse and caught COVID while neutropenic in a single room.
Thankfully I just had a bit of a cough. After that I realised that there are no safe spaces. A friend could pop over and Infect me unknowingly. I still avoid really crowded places but I’ve lost so much and I’m not giving up a social life.
If I get an infection I’ll dial 999 and get to A&E with all my medical documentation including warning cards. I’m now a bit of an expert in my illness and will tell the A&E doctors that I need to be isolated. I’ll also contact my CNS and she’ll be on the case immediately. I’ve got a hospital bag packed just in case.
Forewarned is forearmed. I’m a realist. I may not have much longer and I’m not going quietly.
I never thought I’d admit this but the Duran Duran song, ‘Ordinary World’, really speaks to me. We’ve lost so much but we can still struggle for some semblance of normalcy.
I really hope you find your happy medium

[spectralisParticipant]

Thanks for all your replies. The plan was to start Lenalidomide 100 days post SCT but I developed two pulmonary embolisms a few weeks beforehand. So the Haematology Team decided to delay due to the risk of further blood clotting.
Subsequently I had two full body scans because I have non-secreting myeloma (doesn’t show up in blood tests) and a tendancy towards plasmacytomas in my soft tissue.
The MRI and PET scans showed that my tumours/lesions were healing well. But the PET scan showed a tiny, suspect area in my tibia. A CT biopsy a month later was unable to go ahead because the surgeon couldn’t find the suspect spot. It might possibly have been a cyst rather than myeloma but I doubt that knowing my luck.
Tomorrow I see the doctor and hope to find out what the plan is going forward.
I’m trying to find out as much as I can about my treatment options and I urge others to do the same. Don’t wait for your appointment if you have any concerns. Trust your own body and judgement regarding warning signs. Better to be safe than sorry.

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