I was dx 9 months ago have had 3 operations with the final mx in February 2010. I am now 4 months into recovery after some complications with pain and mobility problems because of M.E. I am getting stronger but awaiting radiotherapy. A month ago I was told I wasn’t strong enough to endure the implication of rads and have benefitted from being away from the hospital for a month. Now they have decided that rads’ physical effects would outweigh the benefits for me with severe M.E. symptoms after 3 ops. I am trying to adjust to the decision and know with 3 monthly check ups I am in good hands but the discussion included ‘survival rates’. I can’t quite believe how I’m reacting to this. All the way through I haven’t really recognised that I had cancer. I told myself that I just had to have all the treatments and side effects to get rid of the ‘health problem’ which has now been achieved. I should be pleased I know but I feel very down.
Now I have to contact my ‘clients’ in London and start all those professional conversations… I informed them at the start of the year that I would be back in June. I told them to find someone else as I was going to be off for so long but they all stated that they would wait. I felt very honoured by their faith in me. Now however, active treatment is over and there is no radiotherapy to halt work any further, but I am so weary! I’ve started back with local clients as my brain still functions ok but the thought of travelling two hours up and two hours back from London as well as six hours of contact is making me feel very anxious!
I think I would be in bed the whole day afterwards recovering!
Am I work shy?
It is the guilt of not letting my clients down after they have waited so long… In my new state I really want to give up the London work and despite the pay I now have a different set of expectations for my life. Money is not that important anymore…
However, these clients have become my friends and while I was awaiting rads I knew I had a reason to delay my return to work. Now I have to make decisions.
I realise I must look after myself but I do have responsibilities to my clients too. We do not live in isolation.
I probably shouldn’t have gone on like this on a public forum but my mind is so muddled that I’m now hiding from decision making…
As I work in education if I don’t go back in June I would have to return in September with the new term. I’m not on a contract. It is all quite friendly…
I was off for 9mths too whilst i had surgery, chemo and rads. I went back to work 2 days a week almost 3mths ago. Previously i had been full time so this is very part time for me.
I have no intention of ever increasing me hours again! We live hand to mouth but to me there is more to life than work.
Do what makes you happy.
Be kind to yourself and take your time. Life has changed and maybe your work will have to change too,.
Hi Welsh Girl,
On top of your ME, you have gone through so much over the 9 months!
It was only a month ago, when you were told you wasn’t strong enough to endure the implications of rads!, so surely that would indicate you need a little more time! If you have benefited being away from the hospital for a month, then another month or two, will make you feel so much better!!
Unlike you l had recognised l had cancer, and it frightened the life out of me! so perhaps you have been pushing yourself a bit too much, accept the fact you have gone through a very harrowing time, and chill out for a month or two.
If your clients in London have waited this long for you, l am sure if you explained you needed another 4/8weeks, they would support your views! after all it is for their benefit too, you will be on your toes by then, and do all the right things!!!
And it sounds a good idea to have started with your local clients, keeps your mind busy, but hopefully not too taxing! with no long journeys!
No you are not work shy! just being sensible, l think you know the answer yourself, just that guilt trip we all get when we think we are letting people down that have supported us.
I think we would all look back now, and re-evaluate our lives, what was once important to us, is no longer, the important thing is without doubt out health, and while money is a must, if you can manage with a bit less…
And, you go on for as long as you like, that is what we are all here for…to help each other sort our worries out
Lots of Hugs
Sandra xxx
I’d like you to be a bit kinder to yourself - no we don’t operate in isolation but to do your best work you need to “want to” - and you need to be fully engaged. Life has changed for you and you don’t need anyone’s approval for that - follow your heart!
I know I am hard on myself but without a supportive family structure it is difficult. My family have always denied I have M.E. they think I am LAZY and don’t try hard enough…
So now after the active treatment they think I am not trying hard enough to get better and should be swinging off the chandeliers or something equally difficult! Some of them have not even been in touch since my mx!
So I avoid any moaning/mentioning about my current situation with them but I am so exhausted all the time even though I am making progress. I am scared of their judgement of me and I always have been.
Thank you to Sandra, Lynn and Evie for your thoughts and kind words. I am trying to be what other people want me to be. I don’t have the courage to defend myself and my actions. It’s always such a fight with my sister to get my point over. It always feels like a conflict.
Oh dear, now I’m getting upset.
I just wish I could feel your support more physically.
The isolation and the loneliness is just a killer and affects all my progress/recovery.
Now, instead of being strong I’m just back to being a jelly again.
You say you have responsibilities towards your clients. I would say that your responsibilities should be to yourself. What if you kept on going, commuting to London, then found yourself to be really ill or deeply depressed and unable to work. What would your clients do then? I don’t know what you do, but I would think than no-one is indispensable workwise. I commute two hours each way to work and it is absolutely gruelling. I am so unbelievably tired at the end of the day that it is ridiculous and I havent been through anything like the amount of treatment you have been through. My reason for dragging myself to work has been purely a financial one, but now I have made radical changes and I can cut back my work. I still intend to commute one day a week, but have found work locally for the other days as I hate the commute so much. Like you , I have pangs of guilt because I will be letting down people, but that is just too bad and if I died they would have to find a replacement for me, so why not now?
You are not work shy. You are just getting your priorities right. Work is only a part of life and when you have had a close call with cancer, work becomes less important. From reading your posting, I think you already know what the right decision for you should be and sometimes writing it down helps to make more sense.
Oh Welsh girl
Lots of hugs sent your way!
Yes family, you either love them or hate them!! well not quite, but you know what l mean!
Everyone has their problems, no family is as happy as they seem, there is always a little undercurrent!
I am so sorry you haven’t got the family support you so deserve! we all, no matter, who, what, or why, deserve support while we are going through this terrible nightmare.
I am sure your tiredness is also down to your ME, so give yourself time.
It is very sad that you are scared of their judgement! why would your family judge you? like us all you need and deserve care, love and understanding. What we are going through is truly horrendous, and no one, whether family or friends should judge someone in their hour of need.
We all crumble in our hour of need, one day when you feel stronger l hope you will have the courage to defend yourself, and your actions, and hopefully they will understand your feelings.
But until you feel strong enough to do that, be kind to yourself, if your sister is not as supportive as she should be, then perhaps keep a bit of distance from her until you feel stronger and can cope with the conflicts.
I am sure you have some good friends, perhaps lean on them a ‘little’ rather than family, as they say, you can choose your friends but your family…you are well and truly stuck with them!!!
Do you go to any drop in centres? any clubs you can join, you sound as if you need a ‘new start’
When you say isolation, do you mean from friends and family, or just how you feel? yes lonelines can be a killer, that is why l was wondering if you could join any clubs, anywhere that you can meet people. What about voluntary work, they are always crying out for help, charity shops! hospitals! if you feel up to it! doesn’t have to be every day, just once a week.
On a good day, we feel as though we are getting through this, but on a bad day it seems like the world is falling in on us!
As for being a ‘jelly’ well l think we all have wobbly days, l had mine on Monday!! tomorrow will be a better day for you.
Look through the local papers, libraries, see what is on and pick yourself up and go in search of new horizons!! what about a course at a local college? there must be something that you have wanted to do, but not got round to it! perhaps now is the time to look after you!!
Lots and Lots of Hugs
Sandra xxx
I am concerned with my cancer related issues and I do feel the loneliness of not having anyone to share my worries with at home. Obviously they get bigger and more confusing when they just run around your head for hours and days. I now have reconnected with my old life and am pretty busy and motivated to do more at home/garden but when a storming worry comes into my head I do find the isolation difficult to think through…
So, tonight I was honest for once and shared this with the forum.
I hoped by writing it down it would enable greater clarity.
However, it has put me in touch with more deep rooted family issues that have been around for decades.
I must sound like a complete headcase exposing my ‘dirty linen’ in public. I maybe should have exposed less.
Regarding my decision about work, I thank you all for your thoughtfulness. I think I am clearer about what to do now.
I probably always knew what was best but the loneliness does make you doubt your own instincts. I needed support tonight and I received it from all of you. Thank you for that comfort.
I feel I am not alone.
Hi Welsh girl,
You were just having one of those days that we all have, it is always that much bigger, or harder to cope with when we have no one to share with, as they say…a trouble shared…
As for family, it isn’t a matter of ‘dirty linen’ it is a matter of sometimes we can cope and sometimes we cant!so it is good to express yourself. And it sounds by doing so you have realised what needs to be done, with regards to work. so well done you!
Lots of Hugs
Sandra xxx
I’ve just read your thread here and I agree with the others that you should follow your heart or your gut feeling on this and stop worrying about what others may or may not think.
I have a supportive family, but I feel the need to protect them from how I really feel so I don’t talk to them about it. The only person I really confide in (apart from the ladies here) is my GP who has been wonderful to me and has protected me from being sucked back into work too much too soon. I wish you could go and see him because he would help you make the right decision. I think you are expecting too much and you need to take more time for yourself to come to terms with what has happened to you over the last few months and work out what you really want to do long term… September is not that far off and you may feel completely different by then. Once you do go back to work, it will be very difficult to control how much you do as you inevitably get involved in whatever needs doing - and there is always something.
hi i had bc in aug 2007 the month stands out well. i was very lucky that the company i workedfor were very understanding so once my treatment had finished they mad my job discription easier and fitted it around me.
i have now been made redundant and going for a new job on monday i have explained to the new employer about my left arm as i had all my lymph nodes removed so can not do heavy lifting, pushing pulling.
the job is 8 hour days but with no breaks you eat and drink on the move. my concern is i am on tomoxefin with its side effects and i do still get very tired and this job is on your feet all day.
i asked one of the doctors in my surgery and he was no help when i asked what he thought about the jobs i had applied for he said he did not know. sorry to waffle but my arm does ache and can also feel puffy and i suppose i am nervous about it getting it worse.
Hi,
my personal experience was that after diagnosis,surgery,chemotherapy and radiotherapy I went back to work 2 weeks after radiotherapy finished and even though I was sensible and started back on a phased return after 16 months of gradually getting more and more tired I eventually had a breakdown and couldnt cope with anything. So be kind to yourself and dont push yourself to much. The effects of all the treatment take more out of you than you sometimes realise. 15 months after finishing work I am now starting to feel better but I recognise that I do not have the energy I had before diagnosis and I do not have the energy I expected to have at 60 and I have curtailed some of my expectations and if I need a “quiet” day I now take it.
Your decision has to be taken by yourself but my thoughts are with you as you take it.
(((((margaret)))))
AMBER…if your arm is swollen and heavy feeling get yourself referred to a lymphodema clinic as it sounds as though you have developed it in your arm. You can be given a compression sleeve to help while you are working.
Hi Amber,
Not sure what kind of firm you will be working for, but l thought it was against the law to work for more than 5 or 6 hours without a break?
I think you need to check on this, and ask them why they do not give breaks on such long hours! also is this 5 days a week, or a couple of days? working while you are eating and drinking is not acceptable!
Either way l think you are pushing yourself. l agree with Margaret, you need to speak to the lymphodema clinic, perhaps they could guide you as to work, what about the breast care nurses, they might also be able to help.
Be kind to yourself, and find a job where you get a proper break, unless you really need this job!
Hugs
Sandra xxx
As far as I understand it you should be legally entitled to a break if you work more than 4 hours. I think it’s 15 mins after 4 hours, & 20 mins during the shift if you work 6. I certainly wouldn’t expect to work 8 hours without it being split in half by a break. In my case I work 8 hours with a paid break of 15 mins in the morning & afternoon & an unpaid lunch break of half an hour (used to be an hour but I have chosen to start half an hour later in the mornings).
I’m sure there are ladies on the forum who are qualified to tell you for sure what your rights are - however I can understand that if everyone else working there is accepting the conditions, you won’t be popular with the bosses if you make waves as soon as you start. Unless you are absolutely desperate, I would say don’t touch this job with a bargepole. Let the people who are there already fight for their own rights, or not, without you. I know it’s hard without a wage, but you’ve been offered this job, so nothing to say you won’t be offered another.
Best of luck with it all anyway
xxx
hi thankyou sandra and divvy 1 i have been up since 3 this morning getting in a right state over the job and i decided it is just not worth the hassle so i am not going to go for it.
they told me when i went for the interview that if i wanted a half hour lunch hour i would have to go in a half hour earlier, i have spoken to one of the women who there and she said that you can go to the loo and make a cuppa but you just carry on with your work noone stops. so thanks again for you advice it is nice to have someone to just bounce things off of x
The rules about break time is that you must have at least a 20 minute break if your working day is more than 6 hours, so an eight hour day must have some break in it. One of the best sources of information for work related issues is ACAS - I’ve posted the link here - you’ll find what you asking under “working hours”
Just to let you all know that I eventually decided to give notice to all my London clients with a very formal type letter rather than a warm friendly one and most of them replied very kindly. So that helped my guilt no end!
A couple have not replied at all and I am sad about that.
So this week I started back proper with my local work which only amounts to some part time employment and took the rest of the week preparing my art work for sale at the local market. Tried not to get too stressed and managed living/eating/sleep quite well so it was a massive shock when last night I suddenly got very ill with a virus!!!
Can’t believe it!!!
One week of part-time work and I’m laid up in bed aching in every muscle possible, not able to swallow or speak!!!
My immune system is obviously not as strong as I thought and the stress did raise its ugly head.
You just can’t win can you?
Do I drag myself into work tomorrow or call in sick!!???!!!
Best wishes to you all from a very silent Welsh girl xx
Hi Welsh girl,
Oh dear poor you! that is the trouble with what we have been through, although we probably feel a little stronger, obviously it has taken it out of us. so slow down and be kind to yourself. you probably became contaminated by someone that got too close to you!!
You will have to wear a face mask, keep all those germs at bay.
Pleased you decided to give all your London clients up, there will always be someone that will not reply, not matter what you do you cant please them all! so just please yourself!
Take care and rest those aching muscles
Hugs
Sandra xxx
We are all different and I feel that you should do what you feel you can. If you don’t feel up to it then don’t do it as it could set you back months. The Physical and emotional side effects of Breast Cancer are huge and its not about being weak or workshy. Be kind to yourself and do what you can when you can.
I have returned to work as it helps me signifiantly and stops me dwelling on this nasty disease. However it is tiring and I work from home mostly. When I go into the office I drive in (missing the rush hour) and have a dedicated parking space, I usually leave by 2.30pm (again to miss traffic). I can then have a bit of a doze at home.
However for me the stimulation of the job and interaction with my colleagues far outways the down side and I feel a hundred times better than before I returned. xx
Oh dear WelshGirl, I hope you feel a bit better soon! We’re still susceptible to colds and viruses, just like we used to be, so despite having time off for treatment we still need time off for the odd extra thing too!!
I am glad you have decided to jack in the London clients - from what you said, it was clearly what you needed to do. They will be able to find someone else, and you need to be happy in what you do everyday (and how much of it). I imagine you would have got fed up with all that travel sooner or later anyway, BC or not!
Take care of yourself and I hope your voice returns soon!
Flora xx