[myelsomaParticipant]

I was sent home on September 18 (Day 15), and have been strictly shielding at home for nearly 6 weeks now with my wife and a son. Does anyone have any experience of how long it will be until I can no longer be classed as “Extremely Vulnerable”, and therefore we can be more relaxed about contact with others in the family?

Is this simply a matter of measuring the neutrophils present? They had strongly recovered then fell away somewhat, and I read on one of these forums posts that someone’s neutrophils never recovered fully.

[mulberryParticipant]

I think this really is a discussion to have with your consultant or myeloma nurse because risks vary between patients, let alone regional Covid risks.
I am one whose neutrophils have never fully recovered after SCT but so far (18 months on) this has caused no ill effects, eg I’ve had no infections nor caught any viruses.
Jane

[myelsomaParticipant]

Thanks, Jane. They say 3 months at least. They must play safe, of course. It’s a matter of weighing the risks; it was hard enough without CV, but that now adds a significant extra dimension, as you say.

We are in uncharted waters for statisticians in the fields of Myeloma and other chemo-related illnesses: prospects of recovery from CV contracted n months after a course of treatment has finished. I don’t wish to be a statistic, so must be very careful. But it’s very frustrating, and very tough on the family having to take such stringent precautions.

[Anonymous]

Hi Myelsoma,

Its very confusing and frustrating in these days of the pandemic, to be sure. I reached day +100 yesterday but my consultant said to be very careful for at least 6 months and probably until a vaccine has been found. The hospital in London said that, even with a normal neutrophil count, it’s like having the immune system of three-month-old baby because the acquired immune system has to start maturing all over again.
Luckily my children are now grown up whereas after my first SCT they were all living at home. I went back to work as a teacher that time after 4 months because Covid wasn’t around. I think as Jane says, it’s a very individual decision and difficult when it impacts on others in the family, as you say.
I’m feeling very grateful that my transplant was able to take place during the summer when the Covid numbers were low and hoping for a remission that will see me beyond the pandemic so that it was worth playing the long game but if my boys were still little I don’t know how I would play it…
Meanwhile, we’ve invested in a waterproof gazebo with sand-bag weights and a patio heater and we chat to friends and family from inside the house and pass them hot drinks through the window!! I wonder if my nieces will have memories in years to come of the auntie with no hair who gave them hot chocolate when it was raining outside!
I hope whatever you decide that it works out well.
Rachel

[myelsomaParticipant]

Thank you, Rachel. That’s very helpful, especially the 6 months advice, and “…. even with a normal neutrophil count, it’s like having the immune system of three-month-old baby because the acquired immune system has to start maturing all over again.”

We have acquired a shelter in the garden too – looking for an appropriate, safe, heater for it … can you please let me know what sort you have? We don’t wish to set fire to the “events shelter” that isn’t all that high!

M

[Anonymous]

Hi Myelsoma,

I’m so glad that was helpful. Thank you 🙂

We bought an infra-red 2KW patio heater (new) from eBay. Sometimes they are called Quartz heaters too, I think. It was under £60 but when I looked just now, I found the model we bought is no longer available. My husband removed one of the poles to make it shorter and therefore more stable. I’m no expert on fire safety and I guess any kind of heater brings a risk with it but we don’t have young children and we have been very careful. It has been nice to be able to sit outside – or before lockdown, to talk to friends through the window who were sitting outside in the ‘warm.’

Good luck with searching for something that will suit you well.

Rachel

[Author]

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