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Hi all.

It's been sometime since I came on the forum. Life and work have been so busy, among a few other things.

CML diagnosis 6 year ago. Bosutinib daily 400mg.

I just wanted to throw out a couple of things. First thing is current issue with bloods and feeling unwell. Over the past few weeks I have felt quite lightheaded, foggy, and lethargic. Best way to describe it is like I have stood up too fast, but I feel like this most of the day. I had bloods at my GP last week and my hemoglobin was on the lower end of normal. The bloods standing out were...

Results
Haemoglobin 123 g/l (normal range 130 -180)
Heamatocrit 0.369 l/l (normal range 0.400-0.540)
Red Cell Count 4.27 x10 (normal range 4.50-6.50)

My CRP is up 9 mg/l (normal <5)

My GP said I could be allergic to something seasonal, but I have never felt like this before and have lost a bit weight and appetite is way down.

I am at clinic on Thursday, and just wondered if anyone had any further questions I could raise, as my GP may be right, but I wondered if this was maybe a deficiency or prolonged TKI usage perhaps. Been on Bosutinib 400mg daily for 3 year now. Any thoughts welcome?

Secondly, I work 4 days per week following diagnosis 6 year ago. I suffer from tiredness, spasms, aches, which has been documented on here over the past 6 year. I have been pushing on to get to the 5 days my employer would ideally want, but have found it hard. My new manager is now asking me to work 5 days, or give a good reason why not it would seem.

I just wondered if anyone has found it tough to work full time without any adjustments? If they have found it to be tougher over time?

Again any thoughts welcome?

Thanks guys.

Hello,

Sorry to hear you haven't been feeling well. I don't expect that anaemia at those levels is enough to explain your signs however your GP would be the best person to ask. I wanted to let you know that I also feel like that every now and then for days at a time. I never know if it is due to nilotinib or perhaps a compromised immune system picking up more viruses. 

I have seen posts in the past regarding employment law and searching for those may give you some reassurance. I work less than I did prior to my diagnosis. I'm 39 and was diagnosed 2.5 years ago. I reduced my work to the equivalent of 2.5 days per week and I work from home more. Some people experience more side effects than others and I've decided that there isn't a better option for me than accepting that, working around it and making the most of the good days/weeks/months. 

I hope things improve. CML is a good reason to work 4 days instead of 5 and I believe employment law will support you if necessary.

 

Hi just a thought on the work thing - the Equality Act 2010 requires your employer to make reasonable adjustment to your work to help you deal with your cancer diagnosis. It may be worth gently reminding your new boss about that. It is the same requirement that was in the Disability Discrimination Act, now rolled in with all the other "isms", in a single piece of legislation. 

Thanks for getting back. I do agree that is would seem the spectrum of effects on each individual via disease and treatment is broad, it makes trying to wonder what is normal or a trend, hard.

I have found peoples responses hard to predict, on the whole I have had fantastic support from colleagues, who without them, I wouldn't be where I am, but then I have a minority who seem to think "ok it has been a while now since you were diagnosed, what's happening, you look well?".

Regarding the GP, I am hoping the specialist nurse and clinic can shine some light upon feeling faint and losing weight in the coming weeks. I have to say this is probably the first time I have felt like this on all treatment over time. I have been quite stressed about work maybe that's a factor.

Thanks Alistair, regarding employment law, I appreciate both your responses, I was taken on with the employer knowing my situation, but on 37 hour contract, now they want me to get back to 37 hours, that's understandable, just wish a discussion had of taken place with me directly, as opposed to being told via a 3rd person. It is also being discussed what I can/can't do and what will work for me and won't, again without any discussion.

Thanks again, any other responses appreciated.