Hi all, i am wondering if anyone else has had problems with employers over operations etc. i tested positive over a year ago for brca2 and finally felt strong enough to try and prevent cancer (fingers crossed) i recently had ovaries out and setting date this month for mastectomy. the problem is although i feel comfortable in work saying what i am about to do regarding op’s my manager has been a nightmare she makes stupid comments which are in bad taste. i am due back next monday and really scared. she has now started making comments about hot flushes. i need them to be there and help me until my next op but it isnt happening and now i am the one crying at the thought of going back on mon. i tried to complain to her manager but was asked if maybe im being uptight? its a big office and well known company but i feel i am being a pain needing so much time off and being emotional in there all the time. i would appreciate any advice or stories of anything similar as im starting to think it’s me??? xx
this is awfull and you MUST speak to your HR/ personnel department about this… If its a well known company they really should know better … unless you think they would like to feature in ‘take a break’ or another of those magazines!!
It could be their way of coping with a stressful situation. Some people are no good being compassionate and kind, even thought they may feel concerned for you and use humour to get them through. I know exactly what you mean, though. I have a friend who keeps cracking unfunny jokes about “boobs” and other childish comments. I know she means no harm, but they are extremely irritating but because I like her, I let it go. Work is a different matter. You need to feel comfortable and if their “humour” is getting you down, you should let HR or occupational health know. They could then discreetly advise you manager not to tell stupid jokes at your expense without saying you asked for help. Also, you are probably feeling really sensitive at the moment and maybe under different circumstances, you could tolerate this situation. They need to know that now is not the right time and to leave you alone.
hi cathy i have spoken to occ health and they e-mailed her saying i find some office humour in bad taste but nothing changed and its constant. i do feel timing is key and any other time i would stand up for myself as i dont normally hold back if someone hurts me but the thought of having breasts removed and ovaries taken out has dented my confidence to say the least. it really is too much at times esp if their comments make other people laugh i feel i am a big joke for them. the list of things that has happened is endless and it just makes it difficult. im worrying about symptons of menopause which are severe and now feeling uptight that i have to deal with work too. i just feel like screaming not that it helps x
Hello again anon
As you may remember I have had risk reducing surgery and I found it difficult at work sometimes. I wanted to tell people enough so that they didnt think I was simply having a breast enlargement or cosmetic surgery, but I thought some people found it difficult to understand what and why I was having this op.
I work within a large setting, with mainly male colleagues and I found them to be more sensitive than most female colleagues. It is interesting your manager is female because some of the comments made by females at work have been amazingly insensitive.
I am due to go back to work tomorrow and I am partly looking forward to it but I will also be glad when the first day is over. I have been so nervous these last few days I have been a nightmare to live with.
I think you should go back to occ health and tell them their email has had no effect, or may have made things worse. Let them deal with it, you have enough to deal with at the moment. You could ask to see the company policy on bullying, that would give the signal to your manager you are not prepared to put up with this.
Hi Anon
I just want to add my support here - you are totally within your rights here not to have this “humour” thrown out at you. Possibly she is just very dim and thinks that she is being cheery and matey - but that is no excuse. I really think you need to consider speaking to your HR department and they should take this up on your behalf. The woman has not taken the suggestion from occupational healh - but she will take a direct order from HR. Occupational health are there to get people back to work, to create a safe environment, they aren’t empowered to act on bullying, sexism or behaviour that might well be contrary to the disability discrimantion act.
Anyway best of luck with this -
cathy
This is outragious!
Firstly I think you must create a good realtionship with your HR department and discuss with them in length your proceedures and feelings! You need someone to back you and help you at work. I think you should tell the people you work closely with exactly what you are going through and what you are having done. Otherwise lack of understanding causes ignorant comments. If they understand more they should treat you much better. If they don’t then HR should kick their arses! I tend to make light of stuff about myself but it makes people follow my lead and then they make light and it hurts me! You need to try and be assertive and explain how what they have said is hurtful to you and why it is. Give them an insight into the huge emotional stress this has put on you. They should hopefully then think twice!
Some people find it difficult to know what to say and think they are making it easier by laughing at the situation. They have no idea what a huge deal all this is!
My sister passed away age 35 of bc last year and my HR exec really suprised me as I always thought she looked very hard and unemotional but she broke down in tears and showed huge empathy. I then found I was brac1 last sept and that I would need preventative mastectomies before starting my family and must have my ovaries removed after that. I immediately went to HR and told her everything and was given the reassurance that I would be allowed all the time I needed off work and she would make sure that some pressure would be taken off me at work. I found this so helpful and have gone straight to HR with any concerns since then. I then got restructured at work before xmas which I was furiuos about as I loved my old team and felt like they were my friends but got moved into a huge open plan office in a team where I feel uncared about and literally invisible! My new boss kept likening my operation to her tummy tuck!!! They are all ok but I had my implant exchnge 2 weeks ago and they never wished me luck or anything but HR sent me flowers! I just know that I have the support from HR so I will go straight to them if I have problems. People can be such idiots sadly! I am dreading going back but have come to the conclusion that work is there to pay the bills and is so insignificant compared to all this and a healthy future. It’s just not worth it really! I will see how I get on when I go back!
Also I had full support before my mastectomy op but since then I have had alot of very stupid comments! There are 2 ladies who had breast implants in my large office and even blokes from my lovely old team have made comments like: “you’ve started a trend off there Kate, it’s like silicon valley!!” I let it go the first time as I know they are all blokes and jokers but after hearing it the third time took one to one side and said “actually what you are saying is upsetting me and do not even group me with the other 2 as they had implants by choice to make themselves look better whereas I had my breasts removed and reconstructed to prevent me dying from breast cancer!” Then I have had people say well at least they got it in time thinking I had cancer!
People can be so stupid! I also have now had 3 ladies saying that there friends are having the same as me done but when I ask more they mean they are having breast implants! It drives me nuts! From now on I am actually going to explain to them why what they have said is wrong and hurtful and then maybe they will think twice before being so stupid!
Do not suffer in silence!!! Go to HR as that’s why they are there and either you speak to people or HR can call a meeting! You need their support and do not need any additional stress right now.
You take care of yourself. The bit before the mastectomies is the worse bit! After you will feel better. I promise!!
Lots of love
Katie xxx
hi katie, thanks so much its helps to know its not just me. a lot of what u said is the same for myself i too am based in a large office and i also made light of things because that was my way of coping as had i spoke about it telling them how i really felt i would of cried constantly. i went off work 6weeks ago for ovary removal knowing mastectom is looming and totally stressed. i feel im returning on monday with mastectomy looming and more stressed as im menopausal. i hate feeling no-one understands but then it feels to big for me to understand too at times. when this came about last year i spoke to hr as they were threatning my job and a lady there said under no circumstances would i lose my job. i tried to speak to her b4 op but she has left the company and i spoke to her boss( a man) who said he is not prepared to confirm that i wont lose it as i need to much time off. i feel i have the weight of the world on my shoulders and am scared to go back next week to the jokes about stick on nipples. and i know my hot flushes will be laughed at now but i find it impossible to defend myself. something that annoys me as i never felt this way b4 xx
also if i told people who i worked for i know they would be shocked even more at how im being bullied and held over a barrel about my job as they are a huge very well known company. which makes it worse as they promote looking after people??? just not staff they also raise thousands every year for cancer which is amazing but cant treat me half decent x
anon1
You are not on your own!
I, too, am being ‘bullied’ - not at work but in a voluntary international organisation that raises funds for charities all over the world - especially cancer.
They raise money for charities but treat one of their own members disgracefully. I am fighting them but it is difficult fighting a big organisation.
I didn’t realise so many of us with bc had suffered so much bullying. Why do they do it and cause us so much stress?
Keep strong.
Christiane x
hi christiane,
i think its frightening i cant handle it at times the crazy thing is i have a longer service than my manager. im going to keep a log of comments and threats and when all i have been through op’s i will decide what to do next. i cant believe im scared to go to work xx
Hi Anon1
Do you know that with breast cancer you are covered by the Disability Discrimination Act? Can I advise that you give the helpline a ring and have a chat about your situation, I’m sure they’ll be able to give you some good advice. The calls are free, lines open Mon to Fri 9am to 5pm and Sat 9am - 2pm 0808 800 6000
Hope this helps.
Jo, Facilitator
That is so sickening! I
I still think you must tell people as calmly as possible when they make light of it that you are very stressed and find their comments hurtful! You may come accross to them as so strong and unphased that they are totally unaware of how you are feeling! Inform people properly so they can understand. You are obviously incredibly sensitive right now so may be making things out to be even worse than they are! I had 3 huge freak outs and shouted at people that are actually my friends as I kept having panick attacks!
Hang in there sod everyone else and take care of number1! Go to work, keep your head down, leave on time and clear your head until the next day! Your health is the most important thing right now. It was the most stressfull time of my life before my mastectomy op!
After all this if you feel very badly treated I would kmow your rights and sue them or go to the papers!
Just try and concentrate on you and don’t waste nervous energy on them! It may be better than you think on monday.
Huge hugs and wishing you all the best
Katie xx
Anon, you’re right to keep a record of incidents and things said. Jo is also spot on when she says you have rights under the DDA: you could write to HR to clarify your position. Is there a union in your workplace? You don’t have to be a member to ask for advice, although it might be a good idea to join.
It’s outrageous that some thug in a suit thinks he can tell you your job’s insecure because you need time off for health reasons. There IS support out there, so don’t face this alone.
Good luck with the ops. All the best,
L.
thanks so much for all the lovely comments. im going to take 1 day at a time and try and stay calm and positive. i keep reminding myself that im stronger than i give myself credit as im going through all this ( like many others) and i do still manage to cope with everyday stuff and i do still smile. so im going to enjoy my weekend and prepare myself for it xx
Hi,sorry to hear about your situation at work.I actually came home early from work crying yesterday because i was told i was obsessed and needed counseling and i should just try and forget about cancer!! I only had the op in January and thought i was coping really well.Hope things improve for you.Gill x
hi gill, its absolutely disgusting i dont know how people can act in this manner. if i wasnt going through this myself but someone else was even if i didnt understand their feelings i would still try and understand them and wouldnt dare make fun of them. but u know what maybe that says more about us than them and pity help them if anything like this happens to them. as if its not a stressful time as it is without people like them i feel though that if i cry they have won as it does feel like a battle. i dont think im being over sensitive im just fed up having a weekly meeting being told my absence is an issue. i even had a senior manager say even if i do get cancer the moment i decide im unfit for work they will question my job?? how insensitive xx
That is outragious that they make you fear your job will be gone when you have time off sick at weekly meetings! That is not being over sensitive at all! I would look through your induction handbook if you have one and see their policy on sick leave!
My friend was at a company and they kept extending her trial period and she returned back from her mast. op to be told her job was no longer there! She even saw e-mails interviewing for her job before she returned! She did manage to get a good payout and is glad she’s not there now!
That is completely unnaceptable the comment on cancer too! Do you really want to work for them after this? I really reckon they should get in deep trouble over this inhumane treatment!
Katie xx
Hi katie, no i dont want to work for them now or more so after this. dealing with this just now made me realise life is too short its not a dress rehearsal as we only get 1 chance at it. so when physically and mentally well again which i know 1 day i will be. i will move on at look back at this time and be grateful of what i have. i just fel sorry for myself at times thinking why all this as well as i feel my job should be the last thing im concerned about. xx
Hi ladies
Someone posted this on the other forum but I found some of it useful. Although it applies to people who have cancer or those who have had it I would say that us ladies with the gene faults are going through a similar grieving process and having difficulty to accept our new outlook on life! I certainly have! We are not over senstitive emotional wrecks! We have gone something so huge that it has completely changed our lives and our outlook for the future!! It was too long so I have had to chop bits out! Hope it helps xx
It was too long so I had to chop bits out!
"Once you have recuperated and convalesced, then you have the foundation and the energy to start doing those things that you want to do - and, perhaps, to stop doing those things that you don’t want to do. I remember the patient of a colleague of mine who, once she had completed her treatment for her breast cancer asked for help to '… sort out her job, her marriage and her cancer - and in that order… Perhaps one of the most critical of these concerns the phrase ‘Getting back to normal’. I will argue that, if taken too literally, it can be more of a hindrance than a help and may become a burden which impedes progress. My reason for taking this stand is based on the observation that once heard, the diagnosis of cancer can never be forgotten. Whatever your prognosis, whatever your hopes, whatever your personality, the second that you know that you have cancer your life changes irrevocably. For many people, their sense of security and safety is undermined, their hopes for the future compromised, their trust in their world denied. I will return to the process of dealing with that threat later on, but for now I simply want to acknowledge that to ‘get back to normal’ as if nothing has happened is an unlikely hope. But of course, within that phrase lie a number of other aspirations and messages. The whole process from diagnosis, through treatment to completion is entirely and utterly abnormal. For months your life is taken over by what must seem like an endless stream of clinic visits, of being prodded and poked, scanned and punctured, of waiting and watching, of hopes realised and hopes dashed. Your life has been taken over by others, run to someone else’s timetable. There is every reason for wanting to get back to some thing that is yours to control, yours to manage, back to something familiar. However, to try to do that when so much has changed is a difficult, if not impossible task. The trick is how to regain control and stability in a changed world. Rehabilitation, therefore, is a process of regaining and refreshing old skills, learning and refining new ones to enable you to live the sort of life you want. So what are the tasks that have to be completed in order to get through the process that I have outlined?
Living with uncertainty
This is one of the most difficult aspects of living with the aftermath of cancer. You will note that I have deliberately avoided using the phrase ‘coming to terms with’ uncertainty, because the reality is that this is something to be lived with and managed, not ‘come to terms with’. For those of us not living with this threat, this Sword of Damocles, truly understanding what it feels like is almost impossible. The nearest that I can get to it is to think about that phrase so often used lightly and as banter - ’ See you tomorrow unless I get run over by a bus.’ The difference between those living with the threat of cancer returning and those free from it is that you have seen the bus coming and don’t know whether it will stop in time. Until you can be given a 100% cast-iron, gold-plated, rock solid guarantee that your cancer is completely gone, never to return, then you will have that nagging worry gnawing away at you. Again, immediately after treatment finishes, these fears may be at their worst, compounded by the lack of trust in your body and the lack of confidence that you may be feeling. It makes sense that you would feel that way and the reality and power of your feelings need to be acknowledged by all around you, both lay and professional. As time goes on, you may well find that the terrors inspired by the uncertainty reduce and are sent to the back of your mind rather than residing in its forefront. However, it may not take much to restore them - clinic visits, milestones and anniversaries, high profile celebrities with cancer - can all serve as potent reminders of what you have been through and may bring everything flooding back with a vengeance. It would surprising if this were not the case. Your experiences cannot be expunged or erased from your memory banks - they can be made less accessible, less easily revisited, but there they will be. It would be impossible to simply ‘Put all that behind you and forget about it’ as some of you may have been exhorted to do. If only it were as easy as that. What is often helpful, to balance your understandable pessimistic and frightening thoughts, is to remind yourself of any helpful comments that your doctors and nurses have made. These are constructive alternatives that are not about naively ‘looking on the bright side’ but are real counters to equally real fears. This brings me on to the next task.
Dealing with the world
You won’t need me to tell you just how helpful a kindly word or supportive act can be. Likewise, you will need no reminders as how hurtful and insensitive can be other words and comments. I have already quoted one phrase which I would class as not only impossible but unhelpful and insensitive to boot - trying to ‘forget all about it and put it all behind you’. This, of course, is often just what the person saying it to you wants to do and it can make for significant difficulties in communication if you want to talk about your worries whilst they want to act as if nothing has happened. Although it is important to acknowledge other people’s fears and anxieties which often provoke overly optimistic or excessively reassuring statements, that doesn’t make them any easier to bear or tolerate. It is quite probable that you will already have developed a mask that you put on in some situations in order to hide some of your real feelings. Most people need to defend themselves against the unwittingly hurtful or the crudely insensitive remark. Many of you will have learned to smile sweetly as someone says brightly to you ‘My, you look really well’ when you actually feel terrible. There will be times you will need to keep this defence going because people will still say unhelpful things. Most people think that cancer is like other illnesses - once treatment is completed, the disease is cured and then you are ‘better’. As you know only too well, the situation with cancer is infinitely more complex than this simplistic analysis. As I said to you last time, you have a right to privacy (so you don’t have to tell people everything) and you have a right to tell people what is helpful and what is hurtful. This can be a very difficult task with some people who will take offence very easily, but for your own protection I think that it’s worth it - because, in the words of the advert, you are worth it.
Regaining mastery and control
This is the final task which builds on all those tasks that I have outlined before. It is the alternative to getting back to normal, a place which I said could not be rediscovered. You are in a new and sometimes frightening place where the old certainties and structures are gone and where you are having to look at the world afresh. This doesn’t mean that you have to change everything, it may mean that you change nothing. One way of thinking about this is to use yet another analogy. Most of us have a sort of life plan, more or less worked out. For some people this is a highly detailed route identifying what we will be doing and by when. For others of us it is a rather vague amble with the odd aspiration sketched in. But once you meet a life threat, somehow the map becomes less clear, sometimes even a blank. This is a terrifying experience - where do you go from here when you can’t see the future? For some people this is a chance to review and reshape their life. The realisation that life is too short gives an opportunity to decide what you want your life to be about. And there is nothing stopping you saying that you want it to be about what it was about before or it can be about wanting to stop doing what you did and become the world bungee-jumping champion. Everyone will find their own route and their own path and it is for people like me to provide support and help during that process.
I have not spoken much about mood yet and how this is linked up with all the other factors. There is, as you might imagine, a complex relationship between mood and all the issues that I have referred to. If you are feeling low you won’t find it easy to do things, your self-confidence will be low and your level of self-criticism high. If you are unable to do things this in turn will make you low, so you can easily get trapped in a downward spiralling vicious circle. But there are two sets of feelings that commonly arise at the time of treatment finishing which we need to talk about. The first of these is a sense of abandonment. This makes sense. After all, for many weeks - if not months - you will have been cared for by a large number of people, all of whom have your welfare and well-being at heart. You may have met other patients and relatives with whom you have been able to swap stories and get powerful support from someone who really understands. There has always been someone there to check out that little niggling pain or troublesome symptom. There has been a routine, a structure for you to trust in. Then all of a sudden, it goes. One of my patients described it like this:
‘I got the impression of being balanced on a plank somewhere high up and with nothing to grab hold of. I felt as if I were about to fall off into some abyss.’
Such feelings of aloneness and abandonment are not in any way a criticism of the people who have been caring for you. It is simply a reflection of the fact that they now have to focus on those who are starting out on the process that you have completed. The second set of feelings that some people experience is a sense of disappointment that they don’t feel more joy and happiness at the end of treatment, but rather a sense of let down, anticlimax almost. This can be in marked contrast to what they might have expected. How is it that expected happiness does not arise? There are a number of plausible explanations. One of these is that it hasn’t actually finished as you may still be experiencing the effects of treatment even though its delivery is complete. You may also be still visiting clinic for check-ups. And I have already referred to the uncertainty and sense of threat that may continue well beyond the actual end of treatment. There is also the fact that you may be completely de-energised - plain exhausted - which does not leave much spare capacity for unrestrained ecstasy. In addition, you will have been looking forward to the absence of something unpleasant rather than the eager anticipation of the arrival of something pleasant. So I am not surprised at patient’s surprise at their lack of elation as treatment finishes.
It isn’t all doom and gloom and there will be times when you wake up feeling better than you did the day before and this slow process will gradually change until one day you wake up feeling so well that you realise just how awful it has been. Remember that for months you may have been having to live one day at a time under the most difficult and challenging circumstances. You may well have been unable to enjoy those things you usually like - your sense of taste and smell may have been affected, your desire for food undermined by nausea, your ability to go out limited by your lack of energy. But now you are freed up from the routine of treatment, from the more immediate and restrictive side-effects of that treatment you can begin to move away into a different space. Again, I would emphasis the principle of one step at a time. It is important to build up gradually and by maximising your chances of success. Small, easily achievable targets and goals will be the building bricks of your success.
The reflective process may face you with choices about where to go from here. The exact path you choose (or the one that you have already chosen) is entirely a matter of personal choice and circumstance. Some of you will become stalwarts in the voluntary sector, helping others by running and managing support groups and becoming activists in cancer care and cancer politics - others will want to leave that part of their lives in a separate compartment and distance themselves for that experience. There may be constraints of what you can and cannot do, and that has to be built in. Running the London Marathon may not be everybody’s dream and it may even be a physical impossibility. But there are other aspirations and hopes that you will have fostered during your life. This may the time to review those and make some choices - some may remain dreams, some will be less important than before, some may take on a greater value, some will become a reality. They are yours and yours for the making. (top)"
Dr Peter Harvey
This is an edited version of a talk originally given by Dr Harvey at the
annual conference of the Cancer Self Help Groups.