Cried my eyes out

Public Archive
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After 8 months off work during which I had WLE + axillary node sampling, chemo + rads, now on tamoxifen, I went back to work yesterday. There have been a lot of changes since I last worked, including the creation of a new post senior to mine which has meant that I have had to move offices. When I went in yesterday, my original furniture had been put in the new room, but looks out of place as it was meant for the larger room I previously occupied. Apart from the furniture, the room was bare, and I surprised myself by bursting in to floods of tears. I not usually a person who ‘does’ crying, but I couldn’t help it. This disease robs us of so much.

Just needed to vent that, thanks

Kinden
x

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Hi Kinden
I feel for you. I am the manager of my office and when I had 2 months off for mastectomy and recon I wont back to an office that i was supposed to have complete control of… only to find I was completely out of the loop on everything - its a horrid feeling - you feel like you have lost control of normality. I hope you start feeling better about the changes soon xx
Jenny

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Hi Kinden

Firstly, well done on returning to work, it will hopefully get easier from now on.
Secondly, change that has happened in your absence is inevitable (to a degree) and if it was also a complete surprise, you were not prepared for it.
Thirdly, crying your eyes out is nothing to be ashamed off and is usually very healthy for us and releases tension.

This disease does take things away from us but to a certain extent, only if we let it.

Hope you are doing ok and best wishes

Dawnflower

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Thank girls. Am feeling a bit better about the new order of things now, but am tired.

Jenny - how long did it take you to settle back in?

Hope everyoneis doing ok

Kinden
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Hi Kinden,
I am reading this with interest and concern as I am about to return to work at the end of Jan if all goes to plan, after 10 months of similar to you. I have not been to work since march 2008 and I have not been able to visit either so no contact except emails from a few. Feeling rather shakey about going back as a secondary teacher and I can’t cry in class even if I want to. Trying to think how I would overcome this. My tutor group will have me in tears on the first day for sure.
They have moved me to another room in my absence and told me I got the one without the view because I wasn’t there to speak up. Nice! I have been told since that it is a large room so I am pleased about that. Someone else has my room, classes, desk, has taken my swivel chair, my laptop and even my keys. feeling rather shaky about it all.
I hope your situation continues to improve rapidly and please keep me posted so I can prepare myself a bit better to cope
Love
Lily x

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Hi Lily

Thanks for your message. This whole thing is hideous. Doing only mornings is fine in terms of my level of tiredness, but not so great in terms of what work I can actually do. I am a lawyer. I did a brief Court appearance on Friday, which went well, and all the Court staff and other lawyers were marvellous, but the Judge didn’t make reference to me or welcome me back or anything, which would have been nice.

I think it’s hard going back to work because I don’t know how I feel about me yet. Am I a person with cancer, who has had cancer or what? All I know is that everything in my whole world is different since last April. It was quite lonely being back in my office as I’ve been at home with my husband and 2 small girls for such a long time. It was good to have the time to settle in at my own pace for the first week, but I’m sure people will start expecting proper work from me before too long. I must remember to say no sometimes!

Good Luck

Kinden
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Hie Kinden

I went back to work in July 2008 after being off work for 9 months where I had a mastectomy, chemo and rads. First month was really difficult felt so out of place and did not have the confidence to “be me again”, - but 6 months down the road I am back in the swing of things even moving jobs to take up a new job with even more challenges! Give yourself time, it does get better I promise you, I found I was the one who had to deal with my insecurities. I kept trying to prove to myself that I was the same person as before, it took me a while to accept what I had been through, and allow myself to cry for myself and move forward. My work colleagues were a bit apprehensive to talk about cancer around me, but often I would instigate conversations around cancer and it allowed all of us to have frank and open conversations about my experience. Obviously we are all individuals and some may not be ready to share their experience with other people, but find what you are comfortable with. Since I have been back at work I have had work friends who have had loved ones diagnosed with BC ask me how and what could they do for their loved one going through BC.

I find I more tolerant of so many things, and Yes I do worry about it coming back which is why these days I am more determined to live my life and appreciate all that is round me. I wish Breast Cancer had never happened to me BUT it did, and I know how lucky I am to have come out on the other side.

So Kinden, be kind to yourself, if you need to cry, scream to get you to that place in your head where you need to be - do it. Have you thought of counselling? Just to have a safe place where you can rant!!! Or better still on the BC forums!!

Good luck to you and it will get better

Hugs Heather

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Hi Heather

Thanks a lot for your comments, they have really helped me to feel better. I am finding it hard to find myself post-treatment, and part of that is finding where I now fit in at work. I hope you continue to go from strength to strength.

Kinden
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Hi Lily, your posting struck a chord as I too am a secondary teacher, and not allowed into work.

In my case, I am newly diagnosed (Nov), and been told I am not allowed back into work for many months and certainly not until at least a month after my radiotherapy (?May or June). I feel suspended. I want to work. I feel threatened that I must not be on the premises nor contact colleagues there (I don’t have their home numbers!) I can collect personal possessions with prior permission from boss, but like any visitor, must sign in and out. Occ Health doc said I was fit for work for a little while, as do GP and onc but boss won’t allow it. Strange, odd reaction. Boss has given written reasons including that I might upset colleagues and clients, and that he hasn;t had time to put support in place for those who might get upset. Wierd, odd. Discrimination? Who knows! I do know he wouldn’t dream of doing the same for a pregnant worker, yet all his objections could be levelled at them too (you can imagine what he’s said but I don’t feel safe detailing here).

My reaction: Getting letters from GP, onc, occ health and taking up a grievance with intention only at conciliation and want to propose wording changes to the standard letter I was sent, and to amend procedures to ones that meet managerial needs to protect workplace continuity and supply coverage, yet makes it more humane and less discriminatory for the recipient employee. I need to be able to return to effective work relationships, but as things currently stand that will not be possible for me (his communication and actions have made me feel ostracised). Also, have become the Union’s local association’s Equality officer for the area, and intend to use union’s training resources to equip myself to help others (and me) in this situation. Only slight problem is union says I can’t do training while I am on the sick! Boy, does fighting cancer make you strong to take on the world. I don;t want to fight to destroy my boss, just to right wrongs. It is a heightened sense of fighting for justice. So noone else has to face this experience. “Big want”, that one!

Lily, what were your feelings on your situation? I’d really love to learn from you, as no-one else seems to have experienced the being shut out of work stuff, only the bad experiences of being in at work. I was beginning to feel really alone in this one. Loads of friends say why bother to put energy into feeling anything except grateful. I feel stripped of the benefits of everything that goes with teaching. My tutor group have also moved to another classroom, but I keep my teaching classroom unless they havent told me something. Got a fab xmas card signed by all of them. I sent in individual cards and tin of chocs. Miss them all dreadfully. Look forward to hearing from you and others, especially teachers as it seems to be a particular thing with schools. As a union rep, if there is a pattern here, I would like to know to inform what I do next.

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Have had a bad day again today as this morning I saw consultant hearing man who told me that there is nothing that can be done to restore the hearing I have lost through chemo, so I am completely deaf now in my left ear, and have to report any changes to hearing in my right asap to try to safeguard my hearing in it, which is also worse than prior to chemo. It is horrid not hearing my children properly.

Went in to work after the appt to find that the person who has effectively been given my job whilst I’ve been away is up for an award, and cried my eyes out again. My eldest was 5 today and my mind wandered to whether I’ll see any more birthdays with her.

Isn’t crying supposed to make you feel better? I feel like there’s a lot more tears to come, but don’t want to burden anyone with them, so might go to staff welfare.

Kinden
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Hi Kinden,
I am so sorry about your hearing. You think when you get through the treatment, that you deserve a bit of a break. I am feeling guilty about moaning about my cough, seems insignificant now. I am not sure whether you would have annual checks or sooner, but be sure to get it done every year, just in case. Have you seen a specialist about it?
I am trying not to put too much pressure on mysefl as before now I would always look for ways to further my career but wondering whether I should be more relaxed from now on. Not easy to change though. I see no reason why you might not achieve an award yourself in the future. I think we should allow ourselves time just to get back to where we were, before thinking about trying to go higher.
Hope your sweetie had a wonderful birthday and you WERE there for it and hopefully for many many more to come.
Big hugs
Lily x

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Hi amandajane

I too work in a school (as a bursar) and a colleague (head of D & T) was also affected by BC two years ago. You are covered by DDA which says that a risk assessment should be undertaken before your return to work and that they should make reasonable adjustments for your return. The governors at my school were great (I completed my own RA which they signed) and understood that I needed to return to work for my sanity! I had a letter of support from my Onc and the Occupational Health Dept. supported me as long as I was sensible. BUT it’s slightly different being in the classroom. I have my own office and have little contact with the pupils (at the moment). I am working mornings and not attending any evening meetings etc. They have bent over backwards to accommodate me and I really appreciate it. My colleague however had a full year off sick. I couldn’t imagine being in front of a class of teenage boys on occasions. It’s one thing sitting in your own office working on spreadsheets, quite another in front of a class of hormonal youths! When I was first diagnosed and feeling poorly from chemo I went in on transition days, open days etc so that the staff felt comfortable with me. It’s early days for you, so wait and see.

When I returned to work (and I’m sure Kindensurprise can understand this), even though I was only absent for 2 months and dragged myself in during chemo, I felt as though I ‘didn’t fit’ anymore. My attitude had changed. I couldn’t be doing with all the politics and the squabbles. They didn’t matter any more. I’ve been back since September and I really can’t be bothered. I used to love my job. Working all the hours… but my priorities have changed. I no longer put work first. Now I want to ENJOY MYSELF!! I don’t want to spend any time on people who have shown me no feeling over the last few months. I want to do what I want to do and not go along wiith others. So for now my job suits my purpose (keeping me sane) but not for much longer - as soon as I’ve finished rads I am going to retire early (this summer) and I can’t wait… It’s my time to be selfish.

Mal

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Hi Kinden,

I also started back at work last week after a bilateral mastectomy and chemo. I’m now on Herceptin and Tamoxifen. I worked whenever I could during chemo but after I moved from FEC to Docetaxol I found I couldnt really cope with it anymore.

I can totally sympathise with you! I manage a small IT Consultancy and I was supposed to be getting eased back into things. My boss has been amazing and has said that I dont need to manage any projects or deal with the clients for a month or so. The only thing is he’s away on holiday at the moment so on my second day in I was already having to deal with clients and write up proposals and go to client meetings! And because I’ve not been in I had to get up to speed with things on the fly as I went! So much for getting eased in! On my second day I almost burst into tears and had to hold them in all day until I got home where I was a physical and emotional wreck!

It’s a tough time…half the time I dont even know if I want to be at work at all! And other times I want to get on with things and feel ‘normal’. Then throw in the fact that I have no eyebrows or eyelashes, and I hate my wig so I wear scarves. It’s not easy trying to look professional for work! Plus I am having hot flushes every 30 mins that bring on a full body sweat and a bright red face! So it’s all good fun!

I have to say though, I have had some good days since I have been back and it is getting easier all the time. Keep your chin up Kinden! Even when I have had a really bad day the next one has been a massive improvement. It’s just a hard time and it was always going to be…just attack it the way you have no doubt attacked your treatment. It’s another step and it will take time to get back on track…I think sometimes our expectations are too high about getting back to normal…we have to be patient.

Good luck with it!

Jen x

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Hi amandajane
I am a primary school teacher so understand your frustration. People kept telling me to enjoy being off work but for a number of months I often felt frustrated. During the early days of chemo, I was desperate to return to work if only for a day a week and although the school were supportive I was told by County that I should not work during chemo. In my case I decided not to work for various reasons, I ended up being quite sick on it and the gaps between my treatments were short so I could not think how to organise it. I also realised that it would affect my sick pay. I naively hoped that I could get full time sick pay but work part time.
Your boss certainly sounds unreasonable to say the least and his reasons for you not returning are insensitive. I can’t understand why, at the very least, you cannot go in and work with small groups of healthy children on your higher blood count days!
I imagine it is for insurance reasons as County did say I could go in informally if the head teacher agreed but that I would not be insured to teach.
It probably is not much consolation but I did gradually adapt to being off work and I now have more hobbies/interests than before cancer. I also feel that my life is more balanced and not all about work!
However, I agree that it is mad that when all the medical people are happy for you do a few days you can’t.
Good luck with it all.

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Thanks to all you teachers who have replied to my posting. I’m getting to the point where I am that busy with my post diagnosis life that I am rather wondering how I ever fitted in the time for going to work! Hope that reassures all that I am managing not being at school ok. However, I just remember very vividly the time before christmas during that first chemo cycle when 2 days in work, at christmas, would have made all the difference and how clumsy the letter was that I received from school. Think it was a standard letter supplied by County. Also am sure that it is the insurance system nationally that provides no incentive for schools to have sick teachers into work on odd days they are well. Just such a waste of talent that some light duties are not allowed as and when the teacher feels up to it. I could get so much done on department policies or our virtual learning environment or… actually what am I saying…! I’m just going to be sick quietly, and get on with the rest of my life! I see many of my students in the town, in the supermarket or similar, often as I’m out for the night, going for a drink or similar in my well weeks. As its a High School I teach at, in a very rural setting, I keep in touch with some students through bumping into them in this way. Some are children of my friends and so on. Sixth formers often in my local and year 9s in Sainsburys! They’ve been lovely.

Lily, I was diagnosed mid Nov. Having 3 FEC then 3 Taxotere before surgery and then rad. Hopefully may be able to have just a lumpectomy, but open to a mastectomy if thought better nearer the time. More worried about the extent of the lymph node removal as radiologist found only one node to examine and thought that looked suspicious. Biopsies came back neg but the onc thinks its likely to be a false neg. He would prefer full clearance, but I am concerned about risk of lymphoedema. I need full use of my arms as I have crazy lifestyle, being young and single and no children of my own. I have put a wadfull of cash to one side for the summer when I get the all clear (positive thinking or what!) to do 2 things. 1. big party with money behind bar to say thanks to all my friends and 2. pilots licence in 3 weeks, going out for hours everyday. We’ll see.

Lily, you mentioned about money. I’m almost certainly going to get into half pay situation around May, but Macmillan benefits advisor coming to help fill in DLA forms on friday and I am led to believe that this is not means tested and should bring my net pay up to about the same as on full time full pay. Here’s hoping as I don’t want to eat into my party cash (just joking)!

Ladies, what we all seem to have in common is the passion and desire to be in touch with work, supported by our colleagues, learning of the progress of our youngsters, and eased back in at a slower pace than many of us have managed. I will take heed of this and when the time comes will not rush back, perhaps just bear the summer holiday timing in mind too. Perhaps a few weeks before the holidays to ease me in, then the summer hols and then the autumn term start afresh.

Does it seem to others that in teaching, you have to be off sick or fully fit and functioning, and absolutely nothing else in between? There is simply no provision for being nearly well. Nationally, I would like to see us extend the workload agreement as follows. When a classroom teacher has been off sick to the extent of requiring a sicknote (namely 7 days+) there should be a halfday PPA before any classroom contact to enable the safe and effective handover and preparation for teaching. It is such a brick wall to face return to teaching at 8.45am when you have been genuinely sick the day before. When are we supposed to prepare for the 9am lesson, or those immediately following all day?!

I really don’t seem to have accepted that I am off sick do I?!! Please laugh at me, alongside me, as I am laughing. Its also nearly 2am and I am still on here…! Good night folks and thanks for reading and replying. Its good to have friends here, even if colleagues are not allowed to be in contact for some teachers (crazy world).

Kinden, I suffered tinnitus markedly with my first chemo cycle, but this has settled down for me now. However, I can’t imagine being told it might be permanent or worse. The only solice I can offer if that you have a 5 year old to hug, and after this, I will just never get the chance. Still hoping adoption may be possible, but as a single just over 40, would this be fair on any child? You won’t want my pity so instead have my love and caring. Sweet dreams people.

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I’m getting an award too! Yey, really pleased. It was for something I did before I was sick, but it is great to be recognised in this way.

Am beginning to feel a bit settled in. Have seen staff welfare and been offered further appointments but don’t think I need them at the moment. Won’t cancel yet as tomorrow may be another bad day.

Had a huge party for my daughters’ birthdays at the weekend - 41 kids aged 2-6!!! If i can survuve that, I can take on anything!

Thanks everyone for your support, hope all are feeling well today

Kinden
x

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Hi,
congratulations Kinden on the award and glad you are sounding more upbeat.
amandajane, yes I was told that they would rather I was at home off sick until i could go full time. it took me a while to let go of that invisible string with my classes but yes I really have got a better work/home balance now and hope to keep it. Went in today for a little quiet visit and the fire alarm went off so all1200 saw me in one go. What a hoot. I had a really lovely morning in school and managed to cope with all the hugs without getting emotional too. They are really letting me go back at a snail’s pace until after half term, so I am hoping it will go really well. On the Bc front, they only got one node with me too but it was the sentinel node. Did you have a SNb? The onc told me the pathologist don’t always look for any more if happy with the sentinel node. I still wonder though!
Hope everyone enjoys work
Lily x