back at work and mixed up

Hi there, I'm Cat and I've recently gone back to work part-time after having surgery for borderline ovarian cancer last summer. There's still some uncertainty about my condition as there was something unclear on my last CT and the gynae thought I might have some fluid building up in my tummy. But my work are assuming I'm going to be ok and are increasing my hours gradually up to full-time. All the time I was off-sick, I was looking forward to going back to work and being 'normal' again. But now I'm back, I feel like I'm a totally different person. I feel like I look the same to my colleagues, but I feel totally different on the inside, like everything has changed, but I haven't caught up with it somehow! Sometimes at work I just want to sit and cry. Has anyone else felt strange or just mixed up when they've gone back to work?

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  • Hi Cat

    Thank you so much for your lovely comments on my concerns, U made me feel that there was some hope at the end of a very long tunnel! I hope now that I can do the same.

    While I was undergoing tratment this summer I also (just to add the cherry on top) got made redudant. I always told myself that I would myself until after christmas until I went looking for a new job, my chemo finished at the beginning of Nov and I felt that by Jan I would be ready to go back to work. Now Jan has come I'm terrified and to be honest, totally exhusted, trying to be 'normal' again is so much harder than I thought it would be and getting up and getting dressed in the morning are my big accomplishments of the day! I know what u mean when you still look the same but feel different on the inside-my friends and family keep telling me how well Im doing and that I really should start looking for a job, how can u tell someone that your working your hardest to be u again but that on the inside you are all over the place? Especially when people start putting on the pressure. Perhaps u could talk to work and explain that maybe u could do things a bit slower, that u just need a bit of time to adjust?

    Sorry if I have been going on for so long, but I just think u need need to give yourself some time, it has been a strain on your body, both physically and mentally and however much you want to be 'normal' yhis experience needs to become part of that 'normal.'

    Hope I havent rambled on too much!

    love Emily xx

  • Thanks so much for your message, Emily. Holding onto the idea that I will be a mum some day is the most important thing for me (it keeps me sane!) and I really think you can hold onto that too. There are always options!

    Re: going back to work, I think you are VERY wise to take your time (perhaps you feel like you can't do much else!) I also find that just doing the basic self-care stuff (get up, get dressed, etc.) feels like quite enough to be getting on with a lot of the time! Your family no doubt love you very much and want to support you, but perhaps do not fully appreciate the extent of the trauma you have been through. I am coming to realise that it is very difficult for many others to really get their heads around it (although I've been really surprised at times!) I am very lucky in that there is a Maggie's Caring Cancer Centre here in Dundee. They are actually just starting to run a group for people who are getting ready to go back to work. The course leaders are absolutely up-front about the fact that many people need a long time to adjust to what has happened, that it is totally normal, and that it's normal to feel very tired, and that it is absolutely crucial to take the time to process what has happened fully. (I don't know where it is you live but I know they have Maggie's centres in England in some areas too. The handy thing is that they also run groups for family members which can help families to understand and cope with their own adjustment to their relative's illness.) Anyway Emily I really hope that you continue to take the time you need, it sounds as if you are holding on to what you know is true for you, even if family are sometimes 'putting pressure on'. I hope you can get the support you need from Ovacome and the members here too. I found the MacMillan leaflets about coping after treatment quite helpful, too. If your family are finding it difficult to really empathise with your situation, reading these leaflets might help them get more insight.

    Here's to a 'new normal' (in our own time) for us both!

    Cat xxx

  • Emily, are you on any benefits? You might be entitled to Employment & Support Allowance, and if you don't have savings then council tax/housing benefit too. It does depend on your national insurance contributions though. It's been useful for me as I was self employed before this happened. ESA itself is not that much - £65 for the first 13 weeks and then about £95 a week after that. But it helps! After the first 13 weeks you go into the 'support' group or 'work' group. If you are having chemo or recovering from it you go into the support group automatically. Just had to say that as I'd hate for you to be running down your savings at this difficult time if you don't need to. I think it can even be backdated. Contact the benefits helpline direct through govdirect online, or talk to Citizens Advice or something.

    On a different note, I'm planning to take about 6 months 'off' (ie the whole summer!) after chemo ends and just live cheaply & enjoy the sunshine, visit friends and make the most of all the invitations to stay. Don't rush back too soon as your body has gone through a massive trauma with surgery & chemo and needs a long time to begin to get over it. Take all the time you need and claim benefits if you need them, they are for people like us.

    Cat, sorry have no advice to give as I'm not there yet, sorry I've hijacked your question! Part time sounds good, you still need time to recover from all the trauma and you need nice, healing things in your life like complementary therapies and time with friends. Could you renegotiate things to go back to a permanent part-time contract, maybe 4 days a week? I used to have Fridays off for a couple of years when I was tired of commuting and it was lovely to have a 3-day weekend to look forward to every weekend. It was even worth earning 1/5 less! And it would give you some space to consider your long-term future. And don't forget all the hormone stuff is still going on and making life more difficult! Rachel x

  • Hi Rachel,

    thanks for your message, no worries about hijacking the question, hijack away! I do like the sound of a 4 day week and a 3 day weekend...maybe that would give me the time I need to get a bit more sorted. I always fancied working a four day week before I got sick, and now I have a really good reason to. That sounds a great idea with your 6 months off - fantastic. Oh yes and you're too right about the hormonal stuff - just realised again today, the menopause will be affecting me too. Cat xx

  • Oh yes!

    I'm sorry you're feeling so strange, but it is totally understandable, and my experience was that going back to work became impossible for me.

    Recognise that the whole basis of your life has changed with your diagnosis and surgery, and further, you still have fears and questions.

    If your colleagues are anything like mine were, they will deal with their fear of what you have been through by playing it down and pretending things are the same. I found myself subject both to that, and to the unspoken expectation that I wasn't going to be around much longer, so parts of my work were changed and resuming became harder and harder. I was forced to take action for discrimination in the end, and have now left. It was a horrible experience on top of my surgery, chemo and fears of recurrence.

    Have a long, cool look at your options. Do you need to work? (I suspect so). If so be very clear with your employers and your Doctors how and in what ways you are struggling. Take the time you need to re-enter. If they are pushing you to go back too fast, slow them down. You are likely to be tearful and emotional. You are possibly dealing with an aggressive, surgery induced menopause too. Make sure all this is clear to your employers and take your time.

    Unfortunately, going back to work is yet another difficulty to be negotiated (unless you are very lucky).

    Very best wishes,

    Isadora

  • Isadora, many thanks for your wise words. What you wrote about 'the whole basis of your life has changed' really struck home. Somehow I was much clearer about that, and about how radically my life has changed, until I got back to work, and then old patterns and old expectations of self. Your comments have been most helpful - thank you so much.

    Yours, Catherine

  • I too have only recently got back to working full time. I finished my chemo in August and worked from home for a while then built up my hours. Yes I did feel different. It was sometimes quite distressing as if someone was going around impersonating me but no one noticed except me! I still cry probably every day.

    To be honest before I was ill my job meant so much to me, it was a really big thing in my life which I enjoyed very much. Now I can still enjoy the odd moment but it is not that important any more and I don't feel I am contributing to the same extent. I feel guilty as if I am letting the side down.

    One thing I did which definitely helped was I went to the Maggie's Centre and made an appointment with the psychologist. Where else can you get instant access to this kind of treatment in the UK totally free! We talked and she gave me a couple of tasks to do. For me it was about grieving for what I have lost. I won't make a list - I'd be here all day! It took a few weeks but once I got through that things did get a lot better.

    What is 'normal' anyway? When I am being positive I acknowledge that there is a new normal although I think we both deserve a little time to remember and miss the old one.

    Hang in there and keep in touch . Hope this helps. You are not alone.

  • Dear Linda,

    Thank you so much for your kind answer. It helped me very much. You have articulated (quite uncannily) much of how I also feel at work, and the strange mismatch between how I feel I appear to others (the same as always) and how I feel inside (completely different). The 'impersonation' feeling is extremely disconcerting, I know exactly how that feels!

    Like you, too, my job meant so much to me before my illness, and now it's as though my heart's not in it. That I think is confusing in itself. Like you, I've been to the Maggie's centre and I did get a few fantastic support sessions from the psychologist there before Xmas. I don't think I'd have coped at all without Maggie's, they've been wonderful. I've made arrangements though to see a counsellor now, I think like you there is grieving to be done and at the moment I think I really need someone to guide me through it a bit.

    Oh and on the subject of 'normal' - I've always felt a bit ambivalent about being 'normal' anyway! I don't really think 'normal' exists. We are all extraordinary!

    Cat xxx

  • Hi Catherine, I am going through exactly the same situation as you, to be honest with you it's a relief to me to see that I'm not alone feeling the way I do!!

    I constantly say I need to back to normal, just because I feel that's what I should be saying :-(

    I thought I could deal with everything, but I started seeing a counsellor last week who assured me that they way I'm feeling is TOTALLY NORMAL, considering what I've been through the past 9 months!

    There is light at the end of the tunnel, I suppose we just need to keep slowly going towards it and finding out our new normal

    Good Luck

    Linda x

  • Hi Linda,

    Many thanks for your comments! I'm so glad my question touched a chord with you and helped you feel you weren't the only one going through this. It's been tremendously comforting to me to read all the responses, as it can feel like a very lonely experience day by day.

    I'm so glad you've found seeing a counsellor such a help. I think counselling might be the way forward for me, too. As you said, being through a cancer diagnosis and treatment is such an earthquake of an experience, it's not surprising we're still feeling the 'after-shocks'!

    Let's keep going towards that light at the end of the tunnel!

    Cat xxx

  • Hi Linda - how are you feeling? Have you managed to get back to work? We live in the same area. Perhaps we could compare stories. I've had a massive fight to get back to work. Like so many of the ladies who've commented on this post my job meant so much to me - and when I did try to go back it had been given to someone else.

    For anyone considering going back to work I think it's worth having a try. When you're off for a long time work can seem daunting and you do lose confidence. By going back on a staged return it gives you time to find out whether that's what you really want to be doing for the rest of your life. It's also helpful if your contract allows you to accrue annual during the time you've been off work. Mine does, so I'll be on a full-time salary till September whilst using my backdated annual leave to give me a 3 or 4 day working week.

    Good luck! Annie

  • Hi Cat,

    Oh yes, I know how you feel. I finished my chemo in August, and started back at work in November, just two days a week, then after Christmas moved it up to a 5 day week. It still feels very difficult. My colleagues are very supportive, and probably expect less from me than I expect from myself - they remind me what a tough year I had last year!

    I think I used to be very much on the ball, very proactive & able. But now I feel like my head is full of cotton wool most of the time. I make stupid mistakes, miss the most obvious of tasks. I don't know whether it is still the after effects of the chemo (I still suffer some physical after effects with problems with my joints), or maybe it's to do with losing my ovaries, I don't know. I'm quite tired most of the time, and don't sleep as well as I used to so I don't suppose that helps. It is getting better though - slowly.

    We spend so much of our lives trying to live up to expectations - both our own & those of others. We push ourselves so hard. One of the most difficult things is probably cutting loose from that, being kind to ourselves, allowing ourselves time to heal. It's a really big change in how we look at life, I think. I don't think our society is particularly nurturing. But you only notice when you can't keep up.

    So I'm trying to take it easy, give myself the time I need. Be kind to yourself Cat. Ask work to slow things down. You'll get there is then end.

    love Gael x

  • so very true on a number of your observations.

    Joelle

  • Dear Gael,

    Many thanks for your kind words. I really feel the truth of what you say, and when I read what you said about the 'head full of cotton wool' feeling, I just had to laugh, as it's absolutely how I feel! I have the memory of a butterfly at the moment - my menopausal relatives have told me this is normal and passes eventually, and I am assuming it IS menopausal, but if not, I guess I'll get used to it at some point.

    I think you have hit the nail on the head about expectations - and it's perhaps my own expectations of myself which need most adjustment. As you say, it's a radical change in how you look at life. I was always someone who 'drove' myself (which was probably never particularly healthy anyway). Now I really feel the need for more compassion all round. I also wonder more about others who 'can't keep up'. I do hope that the experiences I've had will help me to be kinder to myself and others.

    Thank you again for your wise words,

    love Cat xx

  • Hi Girls

    Reading this post took me back to my own return to work in May 2010. I had surgery in July 2009 followed by six chemos (Stage IIC) and thought I would be ready for work and getting back to normal by February 2010. I wasn't. It took me until May to go back and even then it felt too soon.

    I experienced some discrimination, I still experience the embarrassment about cancer and in particular the fact I have had cancer, from my colleagues. My boss has made it clear that I have to take leave or make up the hours when I have my three month checks and never asks about them and since I renegotiated my contract in August 2010 has never had a follow up meeting with me to discuss my longer term recovery.

    However, on a positive note, it did get easier, it took some time to settle back in and catch up and for me to feel a degree of self confidence in performing my job. In August I reduced my hours to 15 a week (I only ever did 20) and I work Tuesday, Wednesday and Thursday. This gives me a long weekend every weekend and helped with the post chemo tiredness which at last is beginning to get better. I have three teenagers, a wonderful husband and dog to care for and this arrangement has given me a good work/life balance.

    My attitude to work has changed too. I now do my hours, put my on my coat and come home. I no longer worry about the work that is left not done on my desk. It will wait. My time is now my time I choose how to use it - my time is precious and I value it - whether it is spending an extra hour with a good friend, or finding time to support one of the kids with that difficult bit of homework, or just being able to prepare a family meal that is everyone's favourite - I'd rather be doing this than sitting at my desk, trying to keep up with a flow of work that doesn't end and I'll never be on top of.

    This is my new 'normal'. My old normal was lost in July 2009 when I was told I had cancer. I have grieved for my old normal - I still do - but I am finding my new normal has some real benefits, some good things and I am beginning to heal.

    It wasn't until I wrote this post and the words appeared on the screen I realised how far I had travelled and how far there still is to go - but a day at a time or week or a month is okay with me.

    ps at my last check in December, I was still NED, in remission and CA125 stable. That was a whole year since my final chemo - and what a year it was.

    Becky

  • Becky, what a wonderful, inspiring answer! How you manage to hold down a job, deal with 3 teenagers (wow!), keep house and make some time for yourself is amazing. And I'm so happy to hear your latest results. I'm halfway through chemo with IIB and have drawn strength from your comments, particularly the ones about time being precious and getting to grips with your new normal. Rachel x

  • Becky, thank you for your inspiring answer. When I was in the acute recovery stage after my surgery, I felt as though my whole attitude to life had really shifted, like I knew what was really important. It's inspiring for me to read how you now view work, as I think that's what I'm currently groping towards. I think you're absolutely right about spending that time with loved ones, family and friends. But at the moment I guess my old expectations of life and work are maybe putting up a bit of a last resistance! How wonderful to hear too that you're recovering so well.

    Thank you,

    Catherine

  • I recognise and support many of the commentso far. 14 years ago I was in exactly your position but was lucky enouigh to work for a company who wanted me to choose the hous I spent in the office and how much I wanted to work from home. I was back in a job I loved and the support of colleagues did help me rebuild my confidence. But even so, my priorities changed, the new me wanted time to do other things and to enjoy family and friends. 13 years later I went through the whole chemo, operation, chemo cycle again, which finished last Sept. This time the knock to my confidence was much worse, probably because we had recently moved area and I had given up most of my work. I thought I would never me again. But my GP and the clinical psycologist helped me recognise that I needed to give myself time and again I am enjoying every day, many new things, and have picked up on some of my work again. I am not the 'old me' and never will be but, as someone else said, i have already grieved for her. And I am enjooying the 'new me', new priorities, and the friends I have made locally who have supported me through the depressed times. Of course I recognise that not everyone is lucky enough to have the coices I had and have but I do think building up youir confidence is key. Keep going Cat, I am sure that you will find that you will find a 'life/work balance' (dreadful phrase) that is right for you. Will be thinking of you. Angela

  • thank you Angela! I do hope I find that balance.

    Catherine x

  • I have just been reading all the comments and it has brought me to tears. I have felt so alone. Thinking there is something wrong with me, that I can't put things behind me and move on. I was diagnosed with stage 4 in April 2010 and after extensive surgery and 6 lots of chemo finishing in August 2010 finally went back to work in December 2010, 3 mornings a week just doing mundane tasks. Then January 2011 I began 5 mornings each week which I have found quite tiring. I also have moments when I could just cry for no reason. It just overwhelms me. However, my manager has now told me that I cannot do this much longer and need to start phasing back to full time work. I have explained to her how I feel and requested reduced hours. I am a customer services rep and it has been made very clear to me that if I reduce my hours then my colleagues will have more pressure put on them to cover me when I'm not at work (emotional blackmail!). I did point out that I came under the disability discrimination act and a form for requested reduced hours miraculously appeared for me to complete, however I am not holding out much hope that it will be honoured. That aside, it is sooooooooooo good to know that the emotion and tiredness is not just me being weak.

    Chris

  • Hi Angela

    Thank you for posting this - a 13 year remission is so encouraging to those of us at the beginning of our journey. I hope that your latest surgery and treatments result in an equally long spell of good health.

    I think we should have a prize for the person who comes up with a phrase that says work/life balance - but in a less dreadful way!

    Becky

  • Dear Becky - I've only just read this thread having searched 'work' and 'disability discrimination' as that's what I've faced returning to work.

    Your experience is horrific. How can your boss tell you that you have to take annual leave or make up the hours when you have a check up. That is illegal. You are entitled to go to hospital. I don't know how you cope. You must surely think your boss is a monster.

    Your advice on working your hours and keeping the work/life balance is spot-on. I now do the same and I wouldn't have been pushed into this state of affairs had I been treated in accordance with employment and equality law.

    How are you finding keeping up work and all your home responsibilities. I don't have to worry about children but do have a dog. I find it very therapeutic having to walk him come rain or shine every morning before I go into work.

    It would be good to hear from you and to pool experiences, action plans for discriminatory employers.

    love annie x

  • Hi Cat

    I too have just returned to work after 10 months off - surgery & chemotherapy. Yes we may look the same but we are not certainly not on the inside. I know & understand exactly how you feel, I only wish I had the answers.

    Kind Regards

    Angie Wild

  • Hi Cat

    i found returning to work really hard- I was luck and able to work reduced hours, but got really tired and tearful. I was sent to our staff counselling service which was a huge help and helped me get a perspective on things. Ive certaily learnt to pace myself much better and have alos leart to say no whihc i was bad at doing before.

    Only you can look after yourself as only you know how you feel and what is right for you,

    I do hope you get on Ok

    Jo

  • Catherine, I know how you feel!! its like the whole world continues on as normal but you are not invited! I had stage 3C in 2007 (just after my 40th) had full hysterectomy and 6 cycles of Carboplatin and had 7 months off. The only thing that kept me sane was thinking of going back to work and becoming 'normal' again. My family (bless them lord) were a tower of strength and hope, but still tended to wrap me in cotton wool. Once back its like I was just out of sync with it all, had to re learn parts of it as my brain had a holiday.

    The only thing I can say is, keep trying and one day it just clicks. I had counselling for several months and that too helped me both at home and work. About to face more chemo as the pesky lil devil has comeback to play!!

    God bless

    Angela

  • Gosh I feel soooo sorry for you all having the chemo, I didn't realise just how many of you had to have it, I'm worrying myself to bits now as I had a borderline Tumour stage 1A the size of a rugby ball on my left ovary, was put in hope cancer hospital and had a brilliant oncologist who did a full hysterectomy and removed the omentum, i'm under him for the next five years, I wonder why i've been constantly in pain where the drain was put in on my right hand side 10 months on and i've been to my gp who sent me for a scan but nothing showed up, i mentioned this to the consultant on my monthly check up but he dismissed it too, maybe its adhesions I don't know but it terrifies me the thought of anything coming back.

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