Aplastic Anaemia/Unrelated donor Transplant/Returning to work

Iss

Hi all

I’m on day +238 after having an unrelated donor transplant in June 2017. I was diagnosed with severe Aplastic Anaemia in Dec 2016.

I am hopefully returning to work in March this year. I am naturally apprehensive about it, but would love to hear from those of you who have made the return, with any tips and advice you may have.

I’m a little concerned that my ‘poor brain’ won’t be up to concentrating for long. Also, how have you found the on-going fatigue when returning?

Thanks

Iss (Melissa)

nick63

Hi Melissa,

I am very much in the same boat as you, as I am retuning to work on 1st March after an absence of one year due to AML. I had my BMT in August 2017 so I am six months post transplant.

My boss has been very supportive over this period and I have kept in regular contact with updates on my treatment and recovery. I think keeping these lines of communication open helps a great deal in easing the transfer back to work and in negotiating the terms of my return. Like most people I am returning on a part time basis and we have set out a structure in terms of hours to be worked but on the proviso that even this may be subject to change as I am likely to get tired easily in the early days. I have also asked the company to let people know that my immune system won't be as strong as a "normal" person and therefore anyone with colds, flu, sickness etc should give me a wide berth.

i don't think anything will make this completely easy and I would be lying if I said I wasn't nervous and apprehensive. It kind of feels like I am starting a new job even though I have been in the company for nearly ten years. Will I still remember how to do my job? Will I be able to work the computer system? etc. It sounds silly but one of the things that makes me nervous is the prospect of being the centre of attention. For the past year my contact with the world has been limited to my medical team, close friends and family. Having to get reacquainted with colleagues who haven't seen me in over a year is quite nerve wracking.

One thing I have found very beneficial throughout my journey has been physical and mental exercise. I try and get out for daily walks and also keep my mind active by reading and playing scrabble and suduko. As I said, I have been doing this throughout but have been ramping up my levels of activity in an effort to be physically and mentally prepared for the demands of work. Another thing that's going to take some getting used to is getting of bed early in the morning. It's just so easy to have a lie in when you don't need to be anywhere.

Anyway, I have yet to prove if any of this will work so it's fingers crossed. We will have to post our experiences and ongoing progress after we return to work.

Good luck Melissa.

Best wishes,
Nick.

Dieseldrinker62

Hi Melissa, that’s a good question and one we all probably worry about.

I guess how quickly you settle back into work depends on the job you do, and whether you can ease yourself gradually into it rather than going back full bore. If you can it may be best to return part time or with lighter hours just to make sure you don’t overstretch yourself. Make sure your managers understand what you’ve been through and that you may need to odd occasion to have a longer break if need be.

I was off work completely for 11 months, but then due to GvHD I couldn’t go back to my normal job on construction sites, so I was able to do other things within the business and was also able to work from home for the best part of another 12 months. That was ideal because I was still on immuno suppressants due to the GvHD so being in an office full of people and all their bugs wouldn’t have been good for me.

Fatigue does reduce over time, and now I’ve been feeling ‘normal’ and able to do my normal job for over two years now, having had my transplant five years ago. If your recovery has been relatively smooth you may feel less tired, but as I’ve said I guess that depends on your job and how physical or stressful it is.

Chemo brain continues to affect me and I find myself struggling with my words and people’s names quite often. I think those around me have got used to it now and to be honest it doesn’t bother me.

The main thing I suggest is make sure those around you understand that you may get fatigued or have brain lapses. Also try not to overdo it and understand your limitations - listen to your body!

I’m sure if you’re returning to a previous job your colleagues will welcome you back and be incredibly supportive. They’ll be glad to have you back!

I hope this helps and all goes well. Please let us know how you get along.

All the best,

Steve

Billie_AnthonyNolan

Hi Melissa,

My name is Billie and I work in Patient Services at Anthony Nolan. Returning to work is something that transplant recipients do worry about and it can be a big step in recovery. We have partnered with an organisation called Working Towards Wellbeing that offers support, coaching and advice for people who wish to return to work after a serious illness or with chronic conditions that Anthony Nolan will pay for. You can read more about them in this blog we wrote:

https://blog.anthonynolan.org/2016/11/return-to-work-working-towards-wellbeing/

And if you'd like to like to access this free service please email patientinfo@anthonynolan.org and we can put you touch with them.

Best Wishes

Billie

Bernie

Hi Melissa I hope you are well. I totally understand your apprehension in returning to work. I went back to work in December, 10months after my transplant - it will be a year since my transplant on Thursday.
I started back on a phased return building up to full time over 4 weeks. I found the thought of going back really daunting as I'd been off for a total of 13 months. I was worried that I wouldn't be able to remember anything and whether I'd cope with the tiredness. It has been hard and tiring and my confidence was totally shaken. I find myself second guessing things I used to do without even having to think about them.Thankfully things are starting to come back to me. I've been lucky enough to be able to work from home so at least I don't have to travel each day and can avoid all the germs that get passed around a busy office. I'm shattered by about 9pm but it's early days yet. I have a lot of leave to take which I need to schedule in rather than push myself too much. My advice would be to negotiate a phased return with your employer over as long a period as you can. Use any accumulated leave to buffer your return too. Don't expect too much of yourself and as Steve says listen to your body.
Good luck
Bernie

Rachelj01

Hi Melissa

Congrats on returning to work! Like many of the previous respondees. I had a phased return to work which helped both physically and mentally.

One thing I did when I returned and recently when I joined a new company is share with my colleagues my experience. When people know what you have been through they do tend to be more accommodating (time off for bloods, vaccinations etc) and it's very important if people have colds etc. to be aware that you are move vulnerable. I was hesitant at first telling people in my new place of work as I didn't want to be seen as the 'cancer patient' (AML) but I have to say so everyone has been respectful and supportive.

I don't know your personal circumstances, recently I remarked to my cousin that I'm quite tired working full time and running a household. She persuaded me to employ a cleaner and that the expense I was concerned about was well worth it for my general well being. I employed a cleaner at the beginning of January and it really has helped so my message to you to ensure you have a support network to carry the load of chores / duties we all have to keep life ticking over on a day to day basis and ensure you get the rest you need as fatigue is an issue post transplant for many patients.

Good luck

Rachel

SueP

Hi Melissa,

I had my transplant at 59 so I didn't return to work. But my contribution to this discussion goes back years. I was initially diagnosed with non Hodgkin's lymphoma when I was 45 with a husband in a demanding job and two teenage girls. I was off work for 12 months receiving chemotherapy and when it was time to go back I started employing a cleaner even though I was only working three days a week. It was a good decision and she has been with me ever since. She has also been able to up the level of her support as required during my various relapses. Even today, four years after the transplant, I appreciate her help as I am now 63 and still a bit weak.

Don't be afraid to get any additional support you need.

Best wishes,
Sue