What were your experiences? What helped you? Was there anything you found a surprise?
Perhaps you had a great return to work following treatment, and your employer was supportive and understanding? It may help others to hear these stories.
Going back to work the day after my diagnosis I was in shock, fearful and anxious, I felt in a bubble and I did not understand what my diagnosis meant. This was in 2003 and I realise everything has moved on so much since then, probably apart from all our thoughts and feelings. Everyone at work probably felt as I did and also how would it impact on them and work. I was watching some of them avoiding me, some watching me, some asking me questions and some acting as if nothing had happened. I could not explain to them what I did not understand myself. I had not had a day off sick in the 15 yrs I had worked there. I think we were all thinking if I was not receiving treatment had I really got blood cancer? I felt they wanted proof of my medical appointments that others were not asked for. It took a while for me to realise that my fatigue might not kick in till 24-48hrs after the event. I saw the fun proactive parts of my job taken away from me and I was left with the deskbound reactive roles. I ended up working, running a house and sleeping for the next 5 yrs till I was given redundancy which was a win-win situation, but sad as I proud of and loved my old job.
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Going to work the next day must have been a very strange feeling Erica, especially trying to understand it yourself at the same time. It’s a shame some of your colleagues were avoiding you or acting as if nothing had happened - had you told them, or did you ask your boss to? What would have helped work to support you to carry on in your role as before, do you think?
Hi Dawn
When I got back home after my diagnosis I rang my manager at work and said ‘I have Chronic Lymphocytic Leukaemia and I won’t be into work today, please tell the department’ so I now think I blurted it out as I had been told. Not the best way but my coping mechanism.
What would have helped me carry on my role as before would have been a leaflet like the Bloodwise one on information for your employer and my employer and I talking to each other and discussing each other’s needs. I could have explained why I was not having treatment and the concept of ‘watch and wait’ ……when I understood it. I could have held more meetings at my office as opposed to having to travel in the rush hour where I got quite feint. Sitting down to give presentations. When I understood my fatigue I could have explained that sometimes my fatigue set in 24-48hrs after the event. I could have explained why certain things stressed me out and others did not. I could have said that I felt upset that proof of my medical appointments whilst nobody else’s where. I could have said I had not had a day off sick in the 15yrs I had worked there so I felt I should be trusted not to take advantage of the system. You can tell I would have hated to put more work onto my peers and I am a great one for keeping things inside and holding a resentment. So communication is the key and a how can we make this work attitude.
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Hello @Erica,
You recommended that the best way to have a easy transition into work after diagnosis is to keep communicating.
@Erica did you have any colleagues in your area that were supportive if you needed anything?
Hi Josh (I hope I can al you that), I did not know anyone with any type of cancer or that there were any type of support groups at the time. However I did have a friend at work, although I do not think I really opened up to her or that she would have known how to respond, I just got on with it and buried my thoughts and feelings inside as per usual at the time.
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I’m sorry to hear about your experience. What recommendations would you offer employers on how to support someone who was in your same situation?
I think employers are in a very difficult situation because they are there to run a business, get results and make money (depending on the situation). They have also got to think about the department as a whole, financial pressures and putting an extra strain on challenged peers. They do have responsibilities under the Disability Discrimination laws, their own policies and procedures and a probably a responsible, caring role. They will also be in shock and the whole workforce will be affected in individual ways depending on their circumstances. Some might worry about having to take over the employees workload. I would hope employers would ask the employee how they are and how they are feeling physically and emotionally and what they foresee their needs might be. The communications should be ongoing as the employees needs might be everchanging. The employee will probably need time off work for medical appointments and might well be scared about loosing their role or job and their financial situation. I didn’t realise that my fatigue sometimes set in 24-48 hrs after I had overdone it emotionally or physically. Treatment plans might need to be talked though, what fatigue is and the watch and wait concept etc. Bloodwise leaflets are now very helpful. I was getting very feint at the time and travelling in the rush hour was a problem for me. I also found standing and giving presentations a problem but a simple solution was I could easily give presentations sitting down. So everyone keep talking.
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You posted in the stem cell transplant topic about going back to work. I was wondering if you’d like to share some tips or advice about going back to work after your treatment?
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I returned to work in May just 10 months after my allo (mud) stem cell transplant. I was no longer taking immunosuppressants and I’d just completed my re vaccinations (baby jabs) so I felt safe to return.
Naturally, I was very apprehensive about returning to work. I’d been off for almost 18 months but I was doing well physically and mentally. I felt I was ready to regain some ‘normality ‘ so to speak.
My employer and I agreed on a phased return over 12 weeks but to only do what I felt I could manage. I’d given them booklets from both Bloodwise and Anthony Nolan to read before hand to explain my condition and the effects of the transplant.
I have extra breaks if needed and I have a chair so I can sit down if I’m tiring.
I managed just 2 hours the first week and then built it up very slowly at my own pace. I’m now working 16 hours a week over 4 mornings and it’s enough for now.
The most difficult thing is the risk of picking up infections following recovery as the immune system is still very weak. I’m a Post mistress so I work directly with the public. Luckily, my office isn’t open plan but I do wear gloves to handle money. I use hand gel and thoroughly wipe all the surfaces with antibacterial wipes before I start work. There’s also an air purifier in the office.
I did find during the first few weeks that it was difficult for me to remember things and I really had to concentrate. I didn’t know if it was ‘chemo brain ‘ but I’m definitely better now.
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I think you’ve done brilliantly, going back to work so quickly though I can fully understand why. I wasn’t able to as my employer didn’t keep my job open. So I focused my energies on other things. It is lovely to hear that employers can do the right thing and be supportive.
I am sure all of your regular customers were really pleased to see you back!
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I did not have a good experience with the employer I was with at the time.
I would advise anyone to be on their guard, never have conversations about work without a witness, keep detailed notes etc. And check the law because it does not always go far enough to cover you, as I found out to my cost. My job was advertised while I was still having treatment but at that point I was too ill to do anything about it, by law you have to register your complaint within three months of an incident. This wasn’t possible for me as me and my family was focused on my survival as I was gravely ill at this point!
When I tried to go back to work they kept fobbing me off, lied and told me they had no hours for me in the role I was qualified for. Just like that, yes I had a permanent contract stating my job role and yes they broke the law but when other partners within the company lied to back the practice manager up I was stuck between a rock and a hard place. This is just a brief summary of what I had to go through to try to fight for my so called rights.
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Wow, I think you have done so sensibly and well communicating with your employer and staging your return to work. The issues around work and just life around picking up infections are just never ending, especially with such a compromised immune system. Please keep letting us know your experiences with work, I think it will help so many people, take care.
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I thought I would share this with everyone.
We have a fantastic opportunity for anyone affected by blood cancer who is either struggling to manage their current working life or is looking to get back into employment whilst living with or after blood cancer. We are working in partnership with charity recruitment company Eden Brown, and are looking to host a workshop looking to support people with things like:
-CV writing if you have had a significant amount of time off for treatment,
-Interview techniques, including answering potentially difficult questions around your health status
-Reasonable suggestions to your current or prospective employees about things that would improve your day to day working life.
The workshop will be held in London on 29th November between 12pm and 2pm. Contact support@bloodwise.org.uk if you are interested in getting involved.
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Thanks Bloodwise for organising this opportunity to help people affected by blood cancer in the workplace.
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Hi everyone,
Since diagnosis I’ve managed to work as much as possible still - when I first started having chemo I was working all week, even going to work before chemo if I had time! And working the next day (I had it on thurs, so was back at work on Fridays) and then working through my poorly week (crazy I know)
I was trying to carry on as normal as much as possible as was worried about sick pay etc and had started a new role, however since I reached half way with treatment I started working week on - week off, to give myself time to recover from chemo
I’ve now finished treatment and feel like I need a good chunk of time off, maybe 4 week (but I wouldn’t want to do that to work lol) so probs 3, just to get my head round what on Earth has been going on and what I’ve just been through at 21.
No one at work has said anything but I feel like I’ve built a rod for my own back my carrying on to work and that now chemo is over everyone will expect me back to normal? When only now are the mental effects starting to hit me, I don’t want to do week on - week off, I just need and want some time off and then would like to start going back probably doing 3 days a week.
But I feel bad for doing this? I feel embarrassed in a way and I’m not sure why, I also feel like I’m letting people down, which my counsellor has said I’m the one that’s had the cancer and i’m the one that needs the break which is v true !!
But I can’t help having the worst anxiety at the thought of going back to work but also at the thought of saying well sorry but I’m getting another sick note to over ride the week on-off one as I’m actually quite traumatised and need some time to recover
I know they should understand, in general any workplace should but more so because I work in a psychiatric hospital
But still having major anxiety - stuck between a rock and a hard place !! My brain is saying just go back but I know I’m not ready physically and mentally, and I only finished chemo on May 30th!!
Sorry this is very long x
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Hi Hannah, I really felt for you reading your post. Especially as you are only 21, with your future and career in front of you. I so relate to everything you say so eloquently (I am 69yrs old and was diagnosed with CLL at 53 yrs old). I went through the same fears, dilemmas, thoughts and feelings as you and yes, I made a rod for my own back too. That yukky feeling has come straight back to my stomach. I was not aware that I needed emotional help as yes, I was traumatised too, but it was not talked about or accepted in those days. I firmly agree in a delayed action in me. When I was diagnosed my body froze and I went into practical mode just to get through the first few weeks/months and then the emotional side kicked in. I had always been proud to be seen as the strong, reliable one that had not had a day off sick for nearly 30 years (and 15 years in the job I held). Just think what you and your body have coped with practically I think it is normal for your feelings of trauma to kick in now. Also don’t forget about fatigue, you will probably have read a lot of posts about it on this community forum. I expect your batteries are pretty depleted right now. I really understand your financial concerns and the fact you are trying to prove your worth in your job, but perhaps, and hopefully, a good employer will respect your current needs, even though I understand the very common perception ( by people who have not had a similar condition) that when a course of treatment is completed that we are ‘cured’ and ‘back to normal’. Please let us know how you are doing and feeling.
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Dear Hannah, first of all well done on completing your treatment, you should feel very proud of how you have coped with your diagnosis at such a young age. As far as work is concerned it’s my feeling that you need to go with your instincts about what is right for you at this time, your work colleagues opinions are a side issue and it’s a matter between you and occupational health department at work. It’s not selfish to put yourself first as your mental health is just as important as your physical recovery. I’m 55 so have more life experience to draw on and am able to be be a bit more dispassionate about things and have no problem putting my needs first. So try to resist the temptation to be a people pleaser and do what’s right for you.
Best wishes
Alfie
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Hannah you sound incredibly strong and determined, and you’ve done amazingly to continue working during treatment, you have coped brilliantly. However, please don’t feel obliged to keep ploughing on when your body and mind especially are telling you you need some time to slow down and take stock. While I hope your work would be kind and supportive, I appreciate it’s not a given, but it sounds like for the long term you’ll be a better employee if you can take some time off. Do you have holiday you can take? Or can you speak to your GP/haematologist about signing you off for some time? You are the most important person in this scenario (sorry work!) and I really hope you can find a way to balance it all out. Do you have good support around you? Have you ever been able to access any counselling or emotional support? Take it gentle, and remember our support services are here if you want to talk anything through.
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Hi Hannah,
I am pleased you have felt able to open up and write this post here, everything you have said we can all understand here.
Gosh working while having treatment, that must be very tough and also shows just how determined you are… but that does not mean that you should feel bad about reaching a point where you just need some breathing space, time to reflect on what has happened and time to think about yourself… one thing you need to be is selfish at times. And I am one of those people who finds it hard too but believe me you need to think of yourself. I found that when I finished treatment my mental battle began and has been extremely tough.
Macmillan have lots of information about work and cancer, you are protected by law and they have to support you legally, though I am aware this does not always happen (my own experience was not good at all). You are now protected by the disability law as cancer comes under that and they can’t discriminate. There is information for you and your employer. I worked in a GP surgery and they were abysmal with me so don’t assume, be prepared with all the facts. From my experience if/when you do speak to your employer make sure you make notes and have a witness (I didn’t and paid the price)
Diagnosis is very traumatising and four years on I am still very much affected, as well as struggling physically, that’s why I only work part time. I do understand that you feel bad and that you are letting people down but also try to remember that people take time off who haven’t been through what you have without a second thought. Treatment and chemotherapy is accumulative so builds up in the body meaning that you become worse over time,becoming more and more tired, fatigued and the side effects become worse. The thing is and I come up against this issue all the time, unless you have been through it people don’t get it. It is very frustrating but I have learnt to stand up for myself because no one else will. Having a break is about preparing yourself in the long term rather than struggling on and ending up not coping at all…
Hope this helps and feel free to ask if anything else I can help with
take care
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