How has your boss/colleagues reacted to your diagnosis? Do you have any advice to share with others?
I could not explain to my boss/colleagues what I did not understand myself. They had never had anyone with cancer in the department before and I think we all thought the way forward was treatment and then I would be better. I was always the strong, reliable one, I had not had a day off sick in the 15yrs I had worked there. They suddenly realised I ran my department effectively and efficiently and they did not really know what I did. They took away all the proactive things I did and I was left with a reactive desk job, it really hurt me. I think my advice would be to keep talking to each other and the leaflet for employers and the Bloodwise website would have really helped.
Thank you for that feedback Erica, its a real shame your employer reacted the way that they did. Watch & wait is a complex place to be in after a cancer diagnosis, and isn’t what most people expect to happen when they or someone they know are told they have blood cancer - and to then have the remit and role of your job change must have been so frustrating!
Here is the link to the Bloodwise factsheet for employers around ‘watch & wait’ if others would find it useful. https://bloodwise.org.uk/sites/default/files/documents/watch_and_wait_employers_fact_sheet_0.pdf
I’m sorry you did not have any support at your previous employer. The Online Forum Community would love the input from members about work related issues.
I have had both the worst and best experience with employers since my diagnosis. When I was suddenly diagnosed with AML, rushed into hospital and then didn’t return to work for months I found out that they had advertised and given my job away while I had been having treatment. Yes they are not allowed to do this, but they did and they got away with it. Its a long story so I won’t go into it now but I have learnt a lot and am happy to share my knowledge if anyone asks. I would say to make yourself aware of your rights as early as you can, I didn’t as I trusted them, and document everything, make sure conversations are recorded or witnessed and put yourself first. The law doesn’t go far enough in some situations as there are timescales you need to be aware of. Sadly I was busy fighting leukaemia so missed them.
However my currently employer are great, very supportive and I am very happy and pleased I was able to carry on the job I love
thank sounds so awful they advertised and gave your job away while you were taking care of yourself. Did you speak to lawyer regarding this if its illegal? It sounds like they put you in a bit of a sticky situation.
Hi, Josh, @Annamam seems to have had an awful experience with her previous employer. For me if I was going through treatment, recuperating, dealing with side effects or just feeling unwell or fatigued that would be all I could cope with. I have heard so many of us saying that they do not deal with stress as well now, everything is just too much effort, I just curl up in a ball under my duvet with a hot water bottle and a mug of hot chocolate and often just burst into tears ……… and before diagnosis I was the capable, practical sorter out of all problems.
Yes Joshua it was especially on top of everything else I was dealing with! Yes I did get legal advice and through my home insurance was able to challenge it but simply the law does not cover people like me who are ill in hospital for such a long time as I needed to put my complaint in within a certain time frame which I missed because I was very very ill rather than thinking about my employment situation, plus I didn’t consider that they would act so disgracefully. As I say the law didn’t help and knowing your rights doesn’t help. They lied about certain things and it was my word against theirs and because my lawyers were being paid by my insurance they weren’t prepared to carry on the case. It makes me so angry when I see all these ‘know your rights’ etc posts from charities because it does not warn patients of what they need to do… ie the timescales and this is something I have heard happening a lot. I could go into more detail but won’t at this point. I am happy to answer any questions and share what I have learnt on this
Erica, you are not the only one, sometimes I cope and sometimes I don’t. I think a blood cancer diagnosis strips you of your life confidence. Also those around me who were so used to relying on me haven’t found it easy not to rely on me any more. I found myself getting angry at them for thinking I could still be the strong go to person after what I had been through and was still dealing with.
I am finding though that every now and then I can be the old me just not as often
Oh Anna, it could have been me writing your reply. Thanks for articulating it so well and take lots of care.
you bring up an excellent point about peoples rights. I think at some point in the future, there could be a topic thread about workers rights while people are ill and sign post information to different areas.
Things have changed since I fell ill 10 1/2 yrs ago.
But it was a strange time as the law changed after I ran out of sick pay from my employer. Having been told one thing, in the blink of an eye, it all changed.
I was told 6 months before that my employer only paid pension through ill health I’d you were terminal, & then 6 months later they were sat in my lounge telling me they were now going to pay me my pension through ill health. Then asked if I had any questions. To which I enquired if they knew something I didn’t? Wondering if they’d had a letter from someone telling them of a prognosis that I was unaware of. That person couldn’t get out fast enough.
Thank you so much for sharing your experience with your employer during your diagnosis and treatment. This sounds like a really confusing situation for you, would you mind telling us how this got resolved and was there anything you learned along the way that might be helpful for others facing something similar?
I so felt for you as I read the problems you had with your employer, and just as you are at your weakest, health and emotional wise. When I was in your situation which was also 10 1/2 years ago, I was not dealing with what emotionally or physically stressed me well ( I still don’t). I had no idea of my rights, I had never been in that situation before and trusted my employer’s HR to know and for them to do the right thing as I had been a loyal employee for 20 years. In the end I was technically made redundant, a sort of win win situation, as working full time had become too much for me and my employer needed to make departmental cuts. After my diagnosis I found all the proactive fun parts of my job were taken away from me. I had been so proud of and had loved my job and been dedicated to it for all those years, but I never missed it after I left. Keep posting as I really related to this post.
I was pensioned off through ill health, on a probation period of 18 months. I then had to have a health assessment & the pension was set in place permanently.
I do know that originally I was told I’d have to meet with the school governors to discuss going down the ‘Capabilities’ route. Which felt like I was having a job that I did extremely professionally when well & thoroughly enjoyed, taken away from me for a second time. They would have found me incapable of fulfilling the role so I assume I would have been ‘let go’.
I was much happier to be pensioned off as I definitely couldn’t have carried on in that role, I didn’t have the energy! It didn’t feel,like I’d been discarded.
Interestingly, they replaced me with 3 people!
I really feel for you all with your negative work experiences. Mine were dreadful. The extent of their understanding has been to say the fateful ‘don’t worry’. I’m still there. However, my outlook has changed now and I don’t engage with people there like I used to. I know it’s because they didn’t know whar to do but they expected me to give them the answers when I was struggling to get through each day as it was. Reasonable adjustments have been made but only because i pushed for them. It’s an odd feeling to have worked with some of them for nearly 20years but feel more distant from them than if they were strangers on the bus.
Hi, unfortunately I had very similar work experiences to you and actually reading your post brought it all back to me and I got a yukky feeling in my stomach. I had also been at that job for at least 15 yrs then and I had never had a day off sick. It was a very isolating, lonely place to be although I worked with within a small department. I could not explain what I did not understand myself. I now know myself much better and I know I do not deal with what personally stresses me well and my fatigue can come on immediately or up to 48 hrs after I have overdone it either emotionally and physically. After 5 yrs I was made redundant, a win-win situation. So sad as I had really been proud of my job and I had really loved it. Thanks for posting and keep sharing how it is for you.
Do those of you who have experienced work & employers not being supportive have any tips or suggestions for those facing this challenge currently? Was there anything that helped you? Anything you know now you wish you had known then?
I am very sorry to hear of your experiences, given we spend so much of our lives at work and often feel a strong sense of purpose and identity through our jobs, I can only imagine how hard it is for you. Thank you for sharing them us.
Hi Dawn and @MissP143, I think, and hindsight is a wonderful thing, that honest communication on both sides is key. I think my company and I were both floundering with heightened emotions due to me being in shock on my side. In my department I had always been the healthy, reliable and, although I say it myself, I ran my mini department efficiently, so I had been left alone, We were all fearful of the unknown future so they held meetings without me being involved and took all the best pro active parts of my role away. We really should have all communicated the best way forward and said our needs. We would all have benefited from the Bloodwise booklet about telling your employer.
Hi @Corfu80, was the I’ll health retirement route a difficult one? I am a special needs teacher and have already adjusted my working hours. I had constant infections from the end of September and had more time off in four months than I had in the previous 4 years despite already having Lupus. In January I dropped working Wednesdays and I have my non contact time at home on a Thursday and Friday afternoon. Despite these changes I was still finding it difficult some weeks before the Easter break.