I was diagnosed with Essential thrombocythemia (ET) in April after many years of vague, yet annoying health symptoms. I’m Jak-2 positive and my platelets are around the 600 mark (not terribly high, but high enough)
I have been aspirin and have also had 2 Besremi injections so far.
My issue at the moment is coping with work. I am a nurse, nearly 63, and work 4 days a week. The tiredness is pretty awful, I feel lightheaded and I have suffered nausea and diarrhoea since starting my treatment. My employer is very understanding but I don’t feel I can keep taking odd days off sick. Is this something that others have had to deal with? Any advice is gratefully received
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Hi @HelRol
Sorry you are feeling unwell
I work in community mental health and have a different diagnosis (Chronic lymphocytic leukaemia (CLL)) but feel your frustration and struggle.I too work x 4 days as the fatigue is just unbearable sometimes. I have found I need to take my day off mid week as I just can’t work 4 days consecutively . This has helped me not have to take too many odd days off as I get the break and day to rest I need
I appreciate this isn’t always suitable for everyone but my employer has been great at reasonable adjustments to try and help ( NHS)
I hope you find something workable for you, let me know how you get on
Take care
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Popping along to say hello. Whilst I’m not the patient (my husband is), we found that being transparent and honest (as much as possible) with his employer really helped.
Are you part of a Union or is there a team within work that might be able to help you navigate some of these questions? I know that there are a lot of resources for supporting people at work and financially to understand their rights, options for flexible working and reasonable accommodations. Hopefully one of the blood cancer team might be able to sign post this if you need it.
Worth also mentioning that we found Maggies, the charity particularly helpful and patient at talking through some of the considerations and support available.
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Hello @HelRol
Sorry to read that you’re struggling with work. I can imagine four days is tiring enough then adding in Essential thrombocythemia (ET) and treatment can increase your fatigue to the next level.
I wondered if you had seen our Money and Work website pages. There is some helpful information on Reasonable Adjustments as @DottieB and @Toadmum have suggested: Work pages you may find it helpful to read through, so you know your work rights if you are going to approach HR where you work or just to know other possible considerations.
Interestingly there is another thread where a few people mention Besremi causing increased fatigue, (I’ve seen you have commented there) so I am wondering if this is a newly known side effect of this treatment, rather than just the Essential thrombocythemia (ET) and working.
In case you are not aware, (as you are quite recently diagnosed) Besremi has only started to be used in the UK for the last 10 months or so. It’s being temporarily used to replace a drug that has a world-wide shortage- Pegasus (interferon), and so when there are stocks of Pegasus again there will likely be the option to swap back.
Do mention your fatigue levels to your Haematologist, let them know it’s affecting your work too. It might be helpful to fill in an Myeloproliferative neoplasms (MPN)10 chart to take along, if you don’t already do this. It is a good tool for monitoring your symptoms and sharing with your team: MPN10 Tracker so they can see what is the most troublesome and the level at it’s worst for you.
Hopefully others will also make suggestions for your work-life balance too.
Please keep us posted on how you’re getting on.
Take care.
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