Hi Blood Cancer UK forum, we’re working on an exciting project which looks to shine a light on the everyday experiences of people affected by blood cancer.
We’re currently collecting examples of everyday experiences that no-one else might think about or consider being a part of having Blood Cancer. For example, families might have to do washing daily due to night sweats. It’s those seemingly small things that other people wouldn’t necessarily understand if they hadn’t lived it, but it isn’t small and it makes daily life more challenging for those going through it. Do any examples come to mind? Please do share them below, there’s no such thing as a silly answer!
Hi @LindsayBloodCancerUK I am glad that there is no such thing as a silly answer.
I think trying to explain my fatigue to people who have never experienced it.
My cause and effect can be immediate and everything suddenly is all too much or it can come on 24 hrs later.
A nap might help me.
Also, for me, getting fresh air and appropriate exercise can help alleviate my fatigue sometimes as opposed to me just being with my fatigue, thoughts and feelings.
One of my experience’s to date has been coming to terms with wearing a face mask when for example I go to the supermarket or when working (I am part time in (yes you guessed it) a supermarket!).
I felt quite silly wearing one again (after all covid was 2020 wasn’t it?!) and now still feel very self conscious and often catch people looking at me, and younger children staring.
Due to my wearing the mask it has prompted people to as why, and to be honest, initially it was difficult to speak about it - but with time it is becoming a little easier to explain and often results in the person (more often that n not a customer I’m serving in the supermarket) showing care and concern and that can only be a good thing.
Thank you for introducing this subject. One of the hardest things for me is lack of understanding from well-meaning family and friends. However hard I try to explain it, most people can’t get the concept of what it’s like to live with a long term chronic blood cancer. Comments like “but you’re looking really well” or “I hope you feel better” make me angry these days! As has been said before hidden conditions are hard to explain. It’s not appropriate to talk about feeling better when it’s a lifelong condition and not a simple infection that I will recover from. Raising awareness is so important and although my diagnosis was many years ago, receiving these comments doesn’t seem get any easier!
Difficult for people to really grasp the neutropenic aspect of some blood cancers during treatment
Same for what it really means to be navigating low platelets etc whilst waiting for blood counts to rise
daily washing (husband had terrible night sweats during chemo)
Increased cost of food / household bills for us - struggled to navigate leftovers in the way we did before, coupled with needing to clean more frequently, outsource jobs in the home etc
Difficult for people to grasp the speed and intensity of acute blood cancers - people think it follows the same path / timeframe as more traditionally thought of cancers
Time it takes to receive blood transfusions - inc the waiting, the ordering, the checks, the monitoring etc as well as the actual receiving of them.
navigating children and blood cancer is tricky. Our school nurse had us on speed dial to alert about infections. We had to make decisions on when to remove the kids from school to reduce risk… I never really thought thought about this before!
Ask for a badge saying clinically vulnerable and blood cancer uk do a badge which says stand back I’m shielding
Have you still got the plastic screens at checkouts
Hello
We’ve just gone through a major store refurbushment and whilst weve retained shields at the checkouts, we’ve had them removed from our kiosk (I often work on both). How do I get a “stand back I’m shielding” badge you refer to ?
You might want a couple of these
One for your WRAP and one to keep on you should you need assistance
Perhaps you would feel safer on a checkout as a reasonable adjustment