I’ve just been diagnosed with Essential thrombocythemia (ET) and have been invited to a housewarming party on Sunday. I’m concerned obviously about infection but I also don’t want to lock myself away. Any help would be greatly appreciated. Lynn
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A really good question @LynnB and I think every day we have these dilemmas and it is weighing up with what you feel most comfortable with.
I take the number of guests, how well do I know them, is the housewarming inside or outside etc etc
I don’t envy your dilemma.
Take lots of care and please do let us know the outcome
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Hello there @LynnB, welcome to the forum. I’m so sorry to read of your diagnosis, how are you doing with the news? I was diagnosed last year with a closely related Myeloproliferative neoplasms (MPN) called Polycythaemia vera (PV) and our blood cancers have very similar risks and symptoms so I hope you don’t mind me offering my own anecdotes of living well with these Myeloproliferative neoplasms (MPN)?
Although I’m not a doctor, I have been super careful since diagnosis around others as the severity of infections is heightened when living with Myeloproliferative neoplasms (MPN). Irritating skin issues seem to be common with Myeloproliferative neoplasms (MPN). For example, I’ve had a few nicks and splinters that take ages to heal and I’m currently on week 2 of the remains of a tiny splinter in my finger healing s l o w l y!
The way my haematologist explained it to me is that due to the overproduction of blood cells inherent in Myeloproliferative neoplasms (MPN), simple infections that previously our bodies would have fought off easily can now take longer to recover from. More energy spent defending against infections means less energy overall when we’re already likely pretty fatigued from the blood disorders.
As for other sorts of infections, such as those caught in the air from others coughing/sneezing/breathing, I think if you’re feeling generally well and have the energy for socialising then as long as you take precautions like we would have during the pandemic then that’ll help minimise your risks. Keeping windows open and wearing a mask if it’s a cramped space has meant I somehow never caught COVID-19, so I still do that now and happily go to busy places like cinemas, concerts, bars and so on with my trusty mask.
Something that helped me feel less like I was being overcautious is that I’d rather go through the inconvenience of wearing a mask around others than potentially have a strong or serious reaction to an airborne virus from not being careful. You’ll likely come to recognise when fatigue or illness makes your immune system work harder to protect you against daily wear and tear and can learn to plan accordingly around your energy levels.
Sorry for the vagueness, perhaps your haematologist might be able to offer more definite advice. But based on my experience a year after diagnosis, do keep in mind how now is the time to protect yourself more since you’re a cancer survivor. I’m sure your loved ones would not want to put you at risk to socialise, so I wonder how they would respond if you told them of your need to be more careful?
Let us know how you get on, and I hope you enjoy the housewarming if you decide to go!
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Hi @LynnB.
It’s definitely a dilemma and you have to do what you feel comfortable with. Is your medical team able to give you any guidance?
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