Bothered from Birmingham

Normally I try not to be a burden on the NHS.

We are so lucky to have them. All the people who work there do an amazing job under limited budgets and staff shortages (through no fault of their own).

But today, I'm worried. I'm second-guessing myself. Bloody News, stupid social media, damn you internet.

As you know I have Chronic Myeloid Leukaemia (CML). I will have had it for ten years in September. I am waiting for a big ten-year celebration...Shhh... don't tell me, I want it to be a surprise. 😁🍸🍰

Most of the time I don't blog about it any more as I have lowered my dosage to the bare minimum. This seems to be keeping the disease away, and reduced the fatigue, achy limbs, hair loss and weak nails, which are some of the lovely side effects of my drugs (chemo).

And when I say keep the disease at away, when I go for my three-monthly blood checks, my bloods say I am undetectable for CML. Yay!

Sadly, this doesn't mean it's gone, I tried stopping taking my drugs and within a few months, it was back again, so it looks like I am a lifer. Boo.

So, I am undetectable but I still have to have the flu jab as my immune system is compromised? Or could be if the CML flares up again, I'm not sure, that was never clear. Of course, I have seen a consultant every three months for the last ten years. Did I ask? Nope. I'm an idiot. 

And now we are here. Coronageddon...Joking, we will get through this, come on we have been through far worse; wars, Spanish Flu, Chemical and Nuclear warfare, Meteor hits (ask the dinosaurs about that one!), and we will get through this. But, on a personal note, I would like to know what I am supposed to do in my situation.

On the one hand, Bloodwise advise:

If you have blood cancer and have a weakened immune system, we now advise that you stay at home for the next 12 weeks. This is because the coronavirus can have more serious effects on people with a weakened immune system.
Those with a compromised immune system include people who:
  • currently have any type of blood cancer, whether they are having active treatment or not
  • have had chemotherapy in the last 3 months
  • have had a transplant in the last 6 months
  • are on immunosuppression medication after a transplant
If you’re not sure whether you have a compromised immune system, you should talk to your healthcare team as soon as possible to find out.

As I am not sure if I have a compromised immune system I tried calling my haematology oncology unit to speak to a consultant.
No answer, I let it ring for an hour.

Ultimately, If I have to self isolate, I'm not quite sure how this is achievable. My daughters go to school and college and my husband goes to work. When they are here,  do I hide in the bedroom? Where does my husband sleep? Do we create a pulley system for food and the tanks of coffee I drink each day?

I am sure I am not the only person who is maybe, supposed to be, self-isolating but has a family and a life.

Are we putting ourselves at real risk? I have no idea, I am not sure anyone does? But for now, until I am told differently I will continue to be my normal hermit-y self and stay at home as much as I can, but welcome my family with slightly fewer hugs than normal.

Good luck all.

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