[davebazParticipant]

I am a 78 yr old patient diagnosed, approx 18 months ago, with IgG light chain myeloma with rib cage osteolytic lesions and a suspected small pulmonary embolism.I am currently ‘in remission’ after 8 cycles treatment with Velcade, dexamethazone and cyclophosphamide. Last August, after stopping all treatment, except zoledronic acid, I developed a continuous dry cough, acute breathing difficulties and a mild temperature. This was months before anyone thought of Coronavirus. I was admitted as an inpatient during which I was administered passive oxygen and i.v. antibiotics. The condition resolved and I was discharged after 7 days. I recently received the official NHS letter (via my GP) stating that I am considered at very high risk of severe illness should I contract the Coronavirus and that I should impose strict sheilding. I take ‘severe illness’ to mean severe pulmonary distress requiring respiratory ventilation and with a high probability of a terminal outcome. Recent statements in the media by senior medical authorities have suggested that active ventilation (machines) will be reserved for patients who are likely to benefit the most ( younger, fit and with no significant disease) and are most likely to survive the viral infection. I cannot see that a patient with my history would qualify. I am beginning to think that should I contract COVID-19, I will probably wish to decline hospitalisation and be treated at home with simple palliative/terminal care and hopefully have some final contact with my family. I would welcome comments from any other myeloma patient facing a similar dilema.

[paulpixParticipant]

Hi Dave,

I do not have the same dilema as I am younger and with no heart problems, I just wanted to reach out and just say that I completely understand your decision, and that in some circumstances you may be safer at home anyway but please bear in mind that contracting COVID-19 is not necessarily the end, there are many surviving the disease (of course not all with your background). I just want you to keep some positivity if you can, the same strength that has got you through Myeloma will stand you in good shape now, and please remember you are not alone.

I hope you don’t take this message as interfering or in the wrong way, I just didn’t want your message to be overlooked on here and for you to be at home not being heard in the noise.

If you don’t mind please accept this as a “virtual” handshake from me sending you best wishes and please keep us updated with how you are doing

Have you received the follow up letter asking you to register online?

All the best

Paul

[Author]

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