Hi everyone, I’m 6 months past having a donor stem-cell transplant to cure Acute myeloid leukaemia (AML). And whilst it won’t happen tomorrow, I’m looking to understand how to decide when I am ready to go back to work in some capacity. So opinions and thoughts on your experiences would be appreciated please. Some info first.
I’m still shielding, weekly visits to post-transplant clinic. Things seem stable, and immune suppressant is getting to a low dose. Not sure when getting all my inoculations again will happen cause I imagine it depends on the patient’s recovery. For reasons I won’t divulge I’m not at a full neutropenic diet yet but slowly moving forward on introducing food items.
I work in IT, so remote-working is possible. And it would be part-time initially. Last time I spoke to my employer about it they were open to it. So that puts aside the waiting-for-inoculations-to-settle to be around more people day-to-day. And I don’t think it would be full-speed IT work initially. I’m doing some ‘geekery’ on my home computers to get me into the mind-frame of IT, starting to do some more tech reading etc soon.
Also aware that any benefits etc I am on will be affected, where I am based they will taper-down depending on how much back-to-work I am.
Been doing chores / walking a bit more to get energy levels tested (as controlled and paced as I can). Energy levels are getting better, and I may start driving again soon. I also realise there is a big point on being mentally ready. My mind has been through a lot.
This is not a rushing to get back thing. I just want to feel comfortable in setting some milestones that can be amended as needed.
Hi @Catwithahat great to hear from you again and you certainly seem to be doing all the right things in my mind, slow and steady wins the race.
Perhaps keep talking to your medical team for advice and keep your employer in the loop.
Yes, it is important to get all your inoculations which you will probably talk to your medical team again.
As for looking to a time to start working remotely again it seems you have a good plan to start initially part time.
You also mention the mental impact you have, yes, and also perhaps the effect medically, emotional. psychologically, physically and practically you might have had.
You also mention driving, I know I completely lost confidence just not driving in Covid times.
I hope other will be able to share their experiences for you.
The Blood Cancer UK support line is there for you on 0808 2080 888.
There is also some information on the Blood Cancer UK website on money and work Blood cancer: money and work | Blood Cancer UK
Be very kind to yourself you and your body have been through a lot and please do keep posting how you are doing
I have ALL and luckily went into remission following chemotherapy. I finished my cycles end of October and entered maintenance November. I have been phasing back to work (remotely) since January.
This has been good but also tiring in a way I didn’t quite anticipate. I have had to amend my plan and lengthen it. I am going back to 4 days a week by jun time but won’t be working Fridays as that keeps it clear for my chemo and any blood tests.
I have gone back as financially I needed to as my work were brilliant when I was in hospital they didn’t view maintenance in quite the same way.
Think long and hard about what is realistic as physically I was quite ok when I went back but mentally I have found it exhausting as my work like yours is quite technical.
Don’t go back until you feel ready if you are able to as once your back or going back it’s hard to undo that if you are struggling.
Oh @Tara take it steady as you say you have had to amend and lengthen your plan…
Yes, going back to work can be exhausting in so many different ways but probably medically, emotionally, psychologically, mentally, physically and practically can all be in the mix.
The financial implications were a huge aspect for me, but often not talked about on our forum, thanks for mentioning it.
Really look after yourself.
Thank you @Tara , I appreciate that insight. For me the day of the routine tests, I have to travel (short 40min flight to and back end of the day, taxi journeys…) and the next morning I am usually a bit exhausted. So to be kind to myself and fair to work I would have to allow for that.
Did your approach to work change in terms of your priorities? I usually was someone who’d go the extra mile, and at this point that seems a silly thing to start up again.
Yes my views have changed massively. I highly value my work/life balance…… in favour of life now rather than work.
Don’t get me wrong I love my job and it’s been amazing being back and being work me but I also value my own health and wellbeing more than anything.
I would recommend keeping one day back at least for a while (I’m doing at least a year of 4 days) to allow that time for hospital and you.
Going back to ‘normal’ is also really scary and can be a bit overwhelming sometimes, especially for me as iv spent so much time in isolation during my treatment I find groups of people can be a bit much.
I decided with my doctors I was ready to go back to work next week but to start slowly … 3 mornings per week for a couple of months and then reassess. All of it WFH of course and I won’t go back to my usual responsibilities but more on ad-hoc projects so we can really adjust the workload and timings if needed.