Apprehensive about returning to work......

[Janlol]

Hi everyone

I have been off work since October due to 2 splenic infarcts and my recent diagnosis of JAK 2 positive MPN, most likely ET (consultant will not 100% confirm the ET!!).

I take daily aspirin and 500mg Hydroxyurea 4 times a week and am feeling generally quite well. I am due to return to my full time job at the end of January and wanted to ask advice regarding this. My employers have been brilliant (only in my new role for 4 weeks before this happened!) and have agreed to a phased return and will also be organising me to see the Occupational Therapist to see how they can accommodate things to help me. They have asked what kind of things I think they will be able to support me with whilst I am at work and if my doctor could add these to my fit note, but I really don't know what would help!

I already have a flex contract so can start work any time before 10am which I'm thinking may help with the tiredness but the flip side of that would also mean I finish later as I still need to work 37 hours throughout the week. My employers would allow me time off for hospital appointments but again this would be unpaid so does impact. They do allow managers to work from home so I don't know whether this would be an option if I really were struggling?

I would really appreciate any advice or suggestions you can offer which may make my life a little easier??

Thanks

Lorraine 😊

[Paul42]

Hi

I dont really have much in the way of advice other than to say I am in the same boat. I have been off since I finished for Christmas although I wasnt well in December.

I have had really bad fatigue, possibly post viral fatigue but not sure. My consultant would have signed me off again but I am keen to work as much as I can, so I have a phased return note from him.

I have arranged for a sit down with my line manager monday, I am going to ask if I can do some time in the office and some at home, but also maybe half hours for first couple of weeks.

I am salaried so my pay shouldnt be affected, but I am same as you have only been there since September.

I think the key thing is for them to understand that you may at any time have to go home if you feel unwell, they need to understand that. I am also surprised they dont allow you to visit your hospital unless its unpaid, this seems unfair.

For me I am the same also can work flexible hours, but I would rather start earlier and finish earlier as I get tired as the day goes on.

It is difficult to know how to proceed but I think them understanding is the key point. Sadly not everyone does , while I have been off because I have felt ok at times I logged on and did some work and have had people suggest to me that I am not really ill which doesnt help, not my line manager though it has to be said.

Hope it goes ok for you.

Paul

[Janlol in reply to Paul42]

Thanks Paul

I totally agree that maybe the first thing I need to do is try the best that I can to get them to understand what an MPN is and the effects of these.

Some of the questions my manager has asked for me to ask my GP/Haematologist are:-

What, if any, adjustments to role/workplace/hours are recommended for management to consider to promote sustained attendance at work/or a return to work?

Should a graduated return and current duties be considered by management and if so over what time period?

Does the doctor recommend that these be considered as permanent or temporary?

I feel as though these are such difficult questions to answer as we are all affected in different ways and also have good and bad days and up and down blood counts!

I'm not due to see my haematologist until after I return to work and am reluctant to try and get my GP to answer these questions as she has not been treating me and probably does not have enough information.

I hope your return to work goes well and it's reassuring that you seem to have the support from your line manager.

Best wishes,

Lorraine

[Paul42 in reply to Janlol]

Hi

I agree refer this to your Haematologist , you dont need to wait for your appointment to do this.

I agree regarding up and down days and i think that has to be factored into each answer.

I would certainly be stating they should be temporary with the timescale to be reviewed, we cant say how long it will take to be back upto speed.

I will be suggesting that some days I may be fine to do a full day and others not, if this is not acceptable to them I will suggest reduced hours to start with.

My Haematologist has been really good and has corresponded by email with me too.

Paul

[conno61]

I also have been off work since last October due to renal cancer. Happy to say my surgery and outcome looks good and I'm looking at returning to work in march. My job is not office based it's manual so I will be asking for a phased return and some adjustments if I find it necessary. Your employer has by law a legal requirement to make reasonable adjustments, although it sounds like you have a good employer. Sadly not everyone has these days. Good luck.

[looksouth]

Hi Lorraine

Wife of ET here...My ET works from home part of the week, and is glad to be able to do that. It was an easy transition, because I used to work from home, so things were pretty much set up.

If possible, why not start setting things up, so that you don't have to do it in a hurry. Apart from a physical workspace, what do you need? A place near that workspace where you can rest if necessary? A separate phone? Secure data storage and a way to share work securely with your office? A back-up internet connection or a faster connection than you have now? Fax or copier function in your printer? Do you need to figure out a local source of office supplies or reliable courier service?

Good luck with getting back to your workplace though, and hope you enjoy the social side!

[Janlol]

Thank you all for your kind replies and advice.

I emailed the questions to my haematologist who has been brilliant and has replied straight away with her recommendations. I will be forwarding these on to my employers and hopefully will be back working full time in the next few months.

Best wishes,

Lorraine 😊