Hi I am interested to learn others experiences with working whilst coping with blood cancer. It has been discussed previously in relation to returning to work after treatment, but what about more general issues, such as:
How open were you with colleagues about your blood cancer?
How did you inform colleagues and what was their reaction?
What worked and what did not?
This arose recently on the forum when discussing dealing with fatigue at work, and organising flexible working. previous postFatigue - what has helped you manage? (Facebook post)
So I am just interested to hear others experiences about the challenges we face at work. It is highly relevant personally as recently I have been working from home due to joint pain, a side effect of my treatment for CLL (ibrutinib). (see my recent post)
Regarding informing colleagues, I have told a few trusted people and of course line managers etc. But probably a lot of people do not know. Flexible working can be great, but there can be issues with colleagues who do not understand the challenges of blood cancer and, as discussed in the above post, ‘fatigue’ can be misunderstood.
So when I return I will circulate an email to explain why I have been working at home. It will also be a chance to ask them for donations for my running this year (to be fair my colleagues have been great with this). But from overhearing past comments, I know one or two probably believe there is nothing wrong with me or else I am exaggerating or making flimsy excuses for time off. (Fortunately I manage to look well most of the time, even when I do not feel it!)
So this is a really difficult problem and I know others have had issues as well.
Hi David, when I returned from the life shattering news I rang my manager and just said 'I won’t be into work today as I have Chronic Lymphocytic Leukaemia. He then told the department.
New territory, none of us knew how to be or what to say, some came straight up to me, some avoided me and everything in between. I could not explain what I did not understand myself, none of us could understand that if I had leukaemia why was I not being immediately treated and we would all be back to ‘normal’. I did not make the cause and effect link of my fatigue and that it could come on immediately or up to 48 hrs after I had overdone it with what emotionally, practically or physically personally does me in. The emotional side really did hit me, they were on high alert for a long time.
I find this such an interesting subject. I had two ops and radiotherapy three years ago. I, like you, have only told a number of people at work. I think this was right at the time, however, it comes with its downfalls.
Let me say first of all that work have been amazing throughout. I know this should be the case for everybody but know it isn’t and so I count myself very lucky! As time goes on I don’t think people’s understanding and empathy of the emotional aspect of living with blood cancer is as positive as it was at the beginning.
I think living with it has become much more ‘manageable‘. I manage my emotions better and have thought about work/life balance and made really positive steps. However, some days (and it could go on for a few or a couple of weeks) I have a bit of a struggle. I find sleeping incredibly difficult and that shows. For those that don’t know they wonder what’s wrong and for those that do they off course, offer an ear and advice but I feel it’s that ‘come on, you can’t carry on like this’ or ‘here we go again!’
Now, this could be me being completely paranoid and actually be what I’m thinking I should do. To be quite honest sometimes I’m not sure!
All I know is that it’s a difficult conversation to have, especially when you are good friends with work colleagues and your leadership team.!that makes it harder because you understand more the impact of you not being 100% on others. For those that don’t know I sometimes want want to shout at them to leave me alone because I’m having a bad day but that’s not their fault.
It’s obvious that me having bad days impacts me and those around me so I’m constantly looking for new strategies. I think sometimes just not gong to work would help - just for a day to gather my thoughts.
So, to summarise; work have been amazing and continue to be. Do I wish more people knew? As time goes on, yes. Do I still need to take care of myself a bit more emotionally? Yes! I’m determined it will get better but think people will
always find it really difficult to completely understand the impact of living with blood cancer.
I was at work when I was told over the phone I had CLL - it was actually SLL - after calling my husband I told my line manager and a couple of colleagues. It was 2 days before the Easter break and my deputy head -line manager- sent me straight home. Unfortunately one of my colleagues went round telling lots of other people. When I returned after Easter I ended up sending an email to explain as lots of stories had gone around. Having said all this work have been really supportive. I started treatment in December and was hoping to work in between chemo but due to low neutrophils and fatigue this has not been possible. I feel quite apprehensive about returning o ce treatment has finished in May.
Hi @SP7, @Nichola75 and @DavidAmbassador. I have been thinking about what you said @SP7 and I can understand you saying you feel quite apprehensive about returning to work once treatment has finished in May. I think I found a lack of confidence and that since diagnosis my emotions have and probably always will be a slight high alert. Having been brought up with the ‘stiff upper lip’ attitude I was always trying to prove myself and would find it very hard to ask for help. On a practical note I have found and noticed it from some others that after finishing treatment you might feel quite low emotionally, energy wise, practically and physically. I have this completely lay persons view that my body keeps going and keeps going through treatment then takes a long while to build itself back up, hence people needing to sometimes phase themselves back into work. I also think that when I returned to work people’s perception was that I was ‘cured’ and back to ‘normal’.
Hi @Nichola75. @SP7 and @DavidAmbassador Just going back to fatigue, I personally do not think that anyone who has not experienced it can understand what it is really like. My husband says he can see my eyes go and suddenly I can burst into tears or everything is just too much. It must be horrible to find sleep incredibly difficult, @Nichola75, I am lucky enough that you could prop me up against a wall and I can go out like a light. I come from a close knit family of night owls as well. Sometimes when I feel fatigued a short nap can help, other times a duvet dive or sometimes I need my fresh air, gentle exercise and interactions with good friends. I have got to know how I tick emotionally, physically and medically quite well since diagnosis and that does mean I manage my symptoms a lot better and sometimes weigh up if I want to do something that will probably fatigue me whether it is worth it or not. I think one of my dilemmas working as part of a team was if I am not functioning to 100% someone else is having to pick up the slack, any thoughts anyone ???
Hi @Nichola75@SP7@Erica@DavidAmbassador I had a six weeks off work after a week in a hospital where I had been misdiagnosed. I had a phased return (working in a GP practice) but everyone knew that I was struggling. When you have to ask a colleague to open a drawer so that you could file some notes, and you need someone to open the fire door in a restaurant after you have been to the ladies (the people I was with thought I had been gone a long time) you know you are in big trouble!
Well after a major operation (removing part of a lung and a repair to the heart pericardium), chemo, relapses, another op, hearing loss, SCT and RT I was no longer able to return to work. I had worked with an amazing team who really supported me, and I cried buckets when I sent in my resignation.
One suggestion might be to get some of the booklets from Bloodwise to leave in a common area for people to look at if they are interested, or perhaps don’t understand about fatigue (not being tired), or how your blood cancer affects you (why you have so many hospital appointments)
Hi everyone - just to quickly say thanks to you for the fantastic and really interesting reponses. Will reply to a few soon since so many interesting comments and obviosuly quite a few challenges people have with this, sepecial thanks to @AnnaMam who asked for this topic to be raised when we were chatting, I will also add a bit more about my own current work related experiences (the good, the bad and the ugly, all laid bare)
Wow @Erica. (I feel like I know you already! ) That took a lot of courage to tell your manager so soon after the diagnosis. I am amazed he (or she) then told the department, I would have been upset if my manager decided to do this (especially if it was without my permission). I took the entirely opposite course, I kept everything to myself. I thought it might adversely affect my career. Seems ironic now. Even when I started treatment. Looking back I think it was the correct decision at the time for me, as I had no symptoms for the first few years - but I probably took it too far to be fair. Even now, I only told a few people. Fortunately one of the people I chose to tell is a natural good listener, she is so empathatic and this has been a great comfort for the days when I am not feeling great. But I totally recognise some of the other stuff, the lack of understanding. I would say I am fortunate that on the whole the people I work with are relatively OK, but there is always one or two… ! I still have not worked out what is the best strategy for dealing with this, so I would only adivse anyone to go with their gut feel about what to tell - which I think is what you did
Such interesting comments @Nichola75 - like the other comments here, so much that I recognise. One thing is clear, it is almost impossible for something like this not to affect work, and yes such awkward conversation. Since I started my clinical trial I now have regular meetings with my line manager and it can be tough to explain this stuff to someone who does not understand blood cancer. So these are often awkward meetings. I also wonder if he is more concerned about me or the department! So when he says I am concerned about you cannot work out how sincere that is. And still pondering whether to tell everyone. Outside work a lot more people know -esp when I joined my local running club and people would ask me why I was running the marathon. Found it quite cathartic and also made me appreciate better why I am doing it!
Hi - I am also planning a phased return though I am actually working from home at the moment, so totally different from your circumstance - you have clearly been through the mill. I have to admit that picking up an infection has become more of a concern since I started the treatment, feel a bit more cautious even though it is hard to know if the risk is really greater now than before. take care
Awkward is definitely a good word to describe some conversations. I have also become much more open with people outside of work and actually it’s been great. I’m getting better at bringing it up casually in conversation which works for me. I think the concern is a bit of both. I know the headteacher at my school (also a really good friend) is 100% concerned about me but she also has a school to run and my absence has an impact! However, if she ever leaves I do wonder if I need something more formal in place - risk assessments, regular meetings etc. It’s something to think about! Like you said with the marathon - if you can bring it up in conversations like that then it’s great. More opportunities for conversations like this would be great wouldn’t it! I’ll have to start thinking of a way in.
Thank you David… and to everyone else, I will reply properly later in the week as I have a tough couple of days of work as we are very short staffed and very busy! So I won’t have much time til then
My boss came to see me in hospital when I’d started my chemo. I’d already told the management team where I work as soon as I was diagnosis and they asked if I wanted them to tell other people in the department. I’m a very open sort of person so I just said that it was fine to tell everyone and get it out in the open and avoid people speculating. I’m not sure word got through to everyone as there were some people who didn’t seem to know when I went back to work but I talked about it to anyone who raised the subject. As the weeks went by that number of people shrank dramatically and nobody ever raises the subject any more so I don’t tend to discuss it. In any case the Coronavirus seems to have taken over as the main topic of conversation!
Hi Franko, I think you describe what happened to you is what I describe as being seen as ‘Erica with Leukemia’ to just ‘Good old Erica’ again’. Yes, there always seems to be another prominent subject in the wings. How are you finding it is at work for you now, are you coping OK?
Work has mostly been normal. In the absence of any real problems you just get on with things. Of course everything has changed in the last week or so. Half my team is missing due to self-isolation. I’ve been keeping things going and being flexible in the face of crisis but as of yesterday’s announcement I like many others on this forum belong in the 12 week club…
Presumably now yes but we’re not getting a very good steer from the university who determined to keep support services over. There’s only a certain amount of work from home that can be done as we’re a face to face frontline team and students are still using us.
very interesting, I am about to tell the whole department . I get a few plugs in for Bloodwise as well Decided also to try and raise a bit for the hospital (as well as Bloodwise naturally) Wish I could do more to be honest
) That took a lot of courage to tell your manager so soon after the diagnosis. I am amazed he (or she) then told the department, I would have been upset if my manager decided to do this (especially if it was without my permission). I took the entirely opposite course, I kept everything to myself. I thought it might adversely affect my career. Seems ironic now. Even when I started treatment. Looking back I think it was the correct decision at the time for me, as I had no symptoms for the first few years - but I probably took it too far to be fair. Even now, I only told a few people. Fortunately one of the people I chose to tell is a natural good listener, she is so empathatic and this has been a great comfort for the days when I am not feeling great. But I totally recognise some of the other stuff, the lack of understanding. I would say I am fortunate that on the whole the people I work with are relatively OK, but there is always one or two… ! I still have not worked out what is the best strategy for dealing with this, so I would only adivse anyone to go with their gut feel about what to tell - which I think is what you did