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Life with bowel cancer


Back to work...

Hi everyone,
I haven't written on here for a while but have been taking a look at where people are at. So, now it's my turn and I'd really like some advice.

I am in a good physical place after 18 months of on going trauma. My details are in the 'young people with cancer' section link here for a bit of background

Following my reversal in September 11 and a rather awful infection I recovered pretty well once out of hospital and found I was able to function surprisingly well. I am very grateful for this and know that this isn't always the case (especially given complete large bowel removal).

My current issue is that I went back to work in January, building up days each week and gradually introducing work back into my life. I work in public health for the NHS and they have been brilliant about supporting me through my time off sick and in this re-introduction. The issue is that I just don't have what it takes to do the job anymore. Whilst I am apparently doing a good job (as fedback by my manager) I feel like a completely different person and just don't have it in me to work this much any more.

There is a physical issue - it's very hard to use the toilets in the office without lots of people hearing or waiting to use it. But to be honest, this I could get over this if I didn't have SO much noise in my head telling me it's wrong and I don't want to be there. The irony is that I do actually like my job, some (definitely not all!) of the people I work with and the prospects within it. But I just don't feel ready for it all yet, and wonder if I ever will. I have basically spent the last 3 weeks crying and agonising about what to do. I have been very honest with my manager about this who has been incredibly supportive, but the more this goes on the more official my reactions will become and will be monitored and assessed etc.. which all just feels like it's all spiralling out of control

I have some of my own business ideas and some consultant prospects which I'd like to have more time to look at which a options I would love to take if i wasn't working. Work have now agreed to me working 3 days a week or flexi time but it still doesn't feel like that's what I actually want. Maybe I just want to leave to have this one thing off my shoulders...

I suppose I'd like to find out what others think about this, if you've had similar back to work experiences and what you might do in this situation...in all honesty I have no idea why this is bothering me SO much (I got through cancer for f* sake!!!) and I really want to have the stories I read about feeling more grateful and happy that i have my life and I got through this awful time, but I just feel stuck in this stupid work decision and can't get past it. I know i'm 'lucky' (I've never liked that word but can't think of a better one right now) to have a job, to be able to make a choice, to be well enough to even think about working...but I'm just not convinced of it myself.

I wonder what you might think about this....

As a note - I have had many conversations with my friends, family and psychologist about these issues and a number have pointed out how spaghetti like my head is...I thought that was quite a good analogy for what it feel like at the moment...

Thank you! :x::x:


Dear Emily

I wondered on reading your post whether my story would help. I was diagnosed with an anterior sigmoid adenocarcinoma in February and had a bowel resection two weeks ago today. My story is not about the cancer but about the journey I went on beginning in 2005. I was unwell with dizziness and some sensory changes which meant that I walked as if I was drunk and fell over a lot. Joe public are an incredibly intolerant (particularly in London) lot. To cut a long story short I was diagnosed with relapsing and remitting MS - my world fell apart for a while. I was working as the manager of a team of hearing therapists in a specialist hospital a job that I tried to return to after 6 months off sick. I too was supported by both my wonderful colleagues and occupational health in my attempt to return to normality. I failed for a number of reasons fatigue, lack of concentration but mainly because I had a feeling that I could no longer do the job I loved as well as I used to. The MS robbed me of the ability to be as empathic and tolerant of others, I knew I had to concentrate on learning to live with the diagnosis and my symptoms.

So I applied for early retirement on medical grounds which I was, thankfully granted I was 50 years old and suddenly I was no longer working full time. I continued to teach undergraduate audiology students one day a week from diagnosis onwards, until I retired completely in 2010. I now fill my time studying for a degree in the Arts and Humanities a, along treasured ambition and am content.

I tell you this story Emily because I understand what you are going through. It took me along time to accept that I needed to make some changes and in a sense become selfish-to put myself first. You have undergone a lifechanging experience that has inevitably made you question what you do and why you do it which I believe is natural when one's mortality is threatened.

I suspect Emily that you know in your heart of hearts what is going to be right for you, instinct is a powerful emotion trust it. I hope this helps in some way and wish you all the best in the future.


emilyhodge: Thanks Suze! Just put the link in so hope that helps.

I'm just running out to work (!!!) but look forward to reading your response properly when I'm back later xx

Breaking out of my own narrative to say ....
Have just read your story, thanks for putting in the link .. now I see you are the young woman who lost her first child to this disease .... I cannot think why you would be surprised that your thoughts and emotions are like spaghetti ... just THAT alone is big enough to reduce any woman to a quivering jelly.

I cannot be the only one in touch with you to see this, but just to add my voice .. after dealing with the cancer it would surely be quite normal for your grief about your unborn child to overwhem you now ... and on that footing alone I would counsel taking your time and not feeling any need to rush any decisions ...

I have heard it said to bereaved people that they should wait at least a year after a loss to make big, life-changing decisions, so it makes even more sense not to rush when you are dealing with not only the bereavement but the whole cancer roller-coaster too. Take your time



Dunno if you need any more of my story, being 20 years older than you surely makes a difference, but "long story short": I think giving up work altogether is very hard, it is another sort of bereavement in some ways .. and I miss my job still, even though there is no way I could do it any more ...

If you are going to go it alone in the consultancy thing, then make sure you do strong research and get good advice about it .. I know ppl who have tried this, the ones who succeeded stayed in a job for paying the bills etc while they set up the frameworks etc they need for going it alone!

Also, if you are prone to depression, losing the structure and friendly social contacts that work provides is a big deal. You might find it hard to believe in yourself if the consultancy doesn't take wings immediately, and that can be very sapping and sad (this happened to one of my best friends who is realy brilliant at all sorts of things, but not very bolshy in her self-belief .. I think testoterone tablets would have helped her, you know to be like blokes who are not really very good at much but can sell ice to eskimos!)

SO, plenty to think about .. look forward to chatting some more about this :x::x::x::x::x:


Hi Em,

I’m not so sure about the spaghetti comment, but your thoughts seem to suggest that there seem to be more paths and maybe options in your life now?

Our respective experiences with cancer are life changing, physically, mentally, or in most cases I would suggest both

Work used to be a big part of my life. I like you now work part time. I’m fortunate that most of that is from home. I find work even part time a big challenge as my ability to concentrate for any period has all but gone. I now need to write a lot more down which in itself is tiring but is my only hope in retaining knowledge. Part time although great in some ways also puts you outwith the regular office environment of your colleagues. I always feel slightly the outsider as I haven’t physically been there for the full working week. Emails are great but not the same as being able to talk face to face with someone.

And then there is my attitude to work which is still positive but I know I no longer have that 101% commitment, my life has become more important and to be honest it probably always should have been that way around. I also had many months off sick. For most of us in our working lives we just get a couple of weeks off at a time to have a holiday, we barely unwind before being back at the desk. But I had the time to stop and think about my life and my work. An obvious statement covering most of the working population but if it wasn’t for the money I would like to be doing something else!

I’ve decided that hopes of getting another job are less than zero. I can imagine the first line of my ‘honest’ C.V. : Mid fifties male, had cancer, just had heart surgery. Often feels very tired and lacks concentration. Suffers from neuropathy in finger tips so often drops small items. Needs frequent access to a comfortable toilet where he often seems to spend an extraordinary length of time. Farts a lot and is often not pleasant to be near for that reason. Has difficulty making early morning starts (my bowels need several hours of a morning to empty) Would be prepared to work part time but less if possible. Would need time off work for what might seem like weekly GP and hospital appointments, and so it goes on. Would I employ me, probably not (think I’ll lift this for a new thread!) :)

I have thought about self employment. I do often have energy outside of the 9-5, Monday to Friday window but what would I do? Not a lot comes to mind, at least not of a lucrative nature. Well meaning friends have suggested photography but that was a diversion therapy for when I was really unwell and besides every person and their dog has a digital camera these days. Could I teach music? I’ve not played any instrument post getting the neuropathy so it might be tricky. On thinking about self employment previous experience suggests that starting your own business requires endless energy, time, and commitment. I’m just not that person anymore

Testing beds or toilet pans, now, there’s a thought but I’m guessing that there are limited openings for these jobs

What I have achieved is learning how to survive. Always had hope that ‘things’ would get better and I would survive and so far I have

Just like Suze my wife and I survive (happily) on a much lower income, with my wife giving up some of her work when I became ill so we now both work part time

As for what I would do in your shoes Em... I’ve obviously not thought about it as much as yourself, but knowing what I do I would stay with your current employer for the time being. They offer you support and a degree of security that you might not find elsewhere. Starting your own business is a great idea, but first I would see if I could hack full time work. You would have the cushion of going back to part time hours or even taking more sick leave if you can’t. Meanwhile though, work on your ideas for a business. If you continue part time you might even be able to do some distance learning courses that would be of use?

There is also your financial situation to think about, if you are comfortable with p/t hours do you really need to work more? It’s still early days post your operations and more time off through only working p/t might make full/fuller recovery easier

As for the toilet at work, see if there is another one that might be more suitable as suggested. It does no harm to take a short break every hour anyway to walk away from your desk. I’m not sure as to what hours you do but would changing them in anyway help you? Your current situation makes life uncomfortable not impossible. I know my colleagues got used to me dashing off to the loo and hopefully think nothing of it now. I ‘ve managed to help my self a little through diet and medication

Not sure if all this will add to your tangle of thoughts but let us know how you get on!



I liek Chools' CV --

and like chools says, the work-place you are in gives you a lot of support, which you would miss if you went solo, and you would not get sick pay, and if you gto pregnant ... maternity leave too ...


not easy ...


I would just like to add that my line manager was and is incredibly supportive, but sick pay equalled 6 weeks full pay, then 6 weeks half pay, and then onto benefits. So, I was worried about my cancer and about money
But, when I was in my thirties I was ambitious and full of energy, and it's the time many people want to work hard, so I can understand that is also part of your dilemma Em :-\ whereas I now feel I'm now coasting work wise but can afford to do so


Wow this thread was just started this morning and already a huge response to it. I have found the juxtaposition of work and cancer also to be an odd one.....i am just about to contact HR to arrange my retirement at age 49! ...literally like now so i will do this and then come back to the thread!


Wowsers....thank you SO much! Really, thank you...I didn't expect such a response but i suppose I have been collating all thoughts around the issue so I can pick my own knowing SOMEONE thinks it's right (jk!)

I agree completely that I need to not make drastic decisions - there is an element of wanting to just change so many things so I feel different but of course wherever I go and whatever I do I take myself with me! I think it's been punctuated by just having had an amazing holiday where I really did get time to think, relax, genuinely be happy for more than just a few hours and realise I want life to be more like that. I'm not expecting a life of holidays or treats all the time or even to be happy ALL the time, but I want to get to a point where I don't feel so up and down at the drop of a hat, vulnerable and lack resilience. I'd like to think of it more positively - that I even went back to work and have given it a go for example.

I think it's a hard thing younger-ish people do go through. I've accumulated a few cancer friends who are around my age (none with bowel cancer) and we all seem to feel these issues are quite prominent as it's when we're meant to be the most energetic, achieving, happy in our lives. But I still think it's an issue clearly people of ANY age find hard - whether young, gaining your career or retired, you still have to make hugely important decisions.

SO - today, I realised that I'm feeling just too ropey about making a full decision about work - if I make a decision to leave completely I want it to be with a good feeling and in a good way, not in the way I'm feeling currently. I have the option to go part-time and there's options to adjust and change roles if it gets to that point.

Your advice on consultancy/self-employment are completely correct. I hope it didn't come across like I was saying that's the easy option as I know it's not, it's just different and something I feel now more personally motivated by following my experiences. I really, genuinely, feel like I'm going to be a GREAT entrepeneur one day which makes it all the more exciting!!

But for the moment, I've decided I'm still not actually very well and have been signed off sick for a bit - possibly a month, possibly more, with full support from my manager, occ health and husband - and let's face it, he's the one that cares the most out of all of them.

I'm aware this may just be delaying the inevitable, or just confuse me more when the sick leave ends but I already feel like a huge weight has lifted and I have just bought myself some time to think about it if I want to, or not think about it at all.

I hope I'm privileged enough to look back on this time in a few years and think 'what a palava you made about work' as I KNOW this will work out somehow...it's just when you're in it it's so hard to see how it turns out.

Thank you so much for your prompt and thoughtful responses so far!!! xxxxx

Chools - amazing CV!!!!!!
Suze - thank you for being there before I even left the house this morning!


Hazel, how did yesterday go? :x:


A bit frantic as my scanner decided not to work but at the 11th hour i got my neighbour to scan a couple of things i had to sign including my notice, final day 30th April but likely they won't insist on me working out my notice....the deed is done!!!


Hi Em,

I'm sure I've spoken to you before, but can't remember! I think that anyone who has gone through cancer, especially big ops, chemo, etc and you have been through more than most emotionally, will tell you they are not the person they were pre diagnosis. How can we be? We now know we are not immortal and know what we will probably die of, perhaps we even have an approximate time scale. We have had to listen to clinicians talking to us as if we are just another statistic, a number, not a real person, sometimes it makes you feel like this person with cancer that is you 'isn't you'. Our heads are all over the place, relatives, friends, neighbours pussy foot around us, people dive for cover in the supermarket if they see you because they just don't know what to say, or can't get that 'cancer' word out of their mouth let alone 'BOWEL cancer'

So you are a changed person, both physically and emotionally, you are not the person who applied for the job or who was sitting in the chair on your last day of work, so it's not suprising that you don't feel right in the job, you possibly don't even 'gel' with the people you used to. You are free from having to 'conform', cancer brings this, I have a freedom, that I've never had before, I no longer care what people think of me, what they see is what they get, if they don't like it, TOUGH! I can now speak my mind, don't get me wrong, I'm not rude or insensitive to people, I just don't care anymore if I don't fit into their nice neat lives, I have my own life to live and it's not going to be nearly as long as I'd always assumed it would be (the women in my family are known to celebrate their centenary and beyond) so I pack as much as I can into each day and won't waste time doing things I no longer get pleasure from. I gave up work for a year when my husband had been seriously ill 4 years ago, and intended finding a new job when I'd recharged my batteries, that never happened, the reason I'd felt so tired was exacerbated by my brewing bowel cancer, so now I don't have a paid job.... who would employ a 59 year old stage 4 advanced bowel cancer patient, with perpetual hospital appts and treatments? But I do work, sometimes every day of the week, I have 2 permanent voluntary jobs and I do as much awareness work for my hospital, Beating Bowel Cancer and anyone else who will have me. I know do completely different work from that that I have ever done before and I love it, I have confidence that eluded me for 59 years and job satisfaction that I rarely got before. I'm not saying do voluntary work, you are young enough to find employment in a different sphere, or follow your consultancy dreams, but do what you want, be selfish, you won't have the chance again!

Best wishes, Alison

Alex Kuczera

Let me start with the words..."It does get easier".....It will be 12 months tomorrow since my reversal and I went back to work some 6 weeks later and even managed to travel to Rhodes in-between for a wedding...which was quite a challenge. Good days for me now probably equate to 6 in 7 now, which constitutes normal Bowel activities, however i do still experience bad days and when these are when I am at work it dose at times stress me out. Having to go several times a day for me can be embarrassing and yes if I have had an accident can cause issues, but they are manageable. Recently I got hold of a Radar key as their are a number of disabled toilets in the building with key access. This for me has made life easier and provides more privacy. Going back to work can be a challenge and for me my main focus is building on strength when its been a busy day and get plenty of rest. An additional challenge is my short term memory which has ben shattered a little since Chemo. My workaround is plenty of paper to jot notes down.

After what you have been through physical scars heal quickly, but its the hidden emotional ones that will take time......and I am sure which ever path you decide to take you will be fine......


Hi Alex,

Glad to hear that you are back at work and things are beginning to get back to 'normal', although 'normal' now takes on a whole different meaning!

Yes radar keys are a blessing and I keep mine in a purse at all times! I also keep a change of clothes in my car, perhaps you could do this at work? There is also a card you can get, I think from Convatec to show that you can't wait in a queue or need to use a loo in a small shop. These may be obtained from the ConvaTec help line. Call them on freephone 0800 282254

Hope things continue to improve Alex.

Best wishes, Alison .


Hi there,

Since I started this thread I thought it might be useful to update you on my 'back to work' status! I'm very pleased to say that I have a new job which i'm loving and feel totally energised by.

January to May were the oddest months ever. Having been through such a traumatic time, you would have thought life following it all would be calm and easy in comparison. But as we all know, it's really just the beginning. And the first major hurdle was my return back to my old job. Having realised very quickly that it wasn't for me, I was feeling such despair about wanting to just be normal again but knowing I couldn't be, and wanting to work and be busy but not in this old way.

So, I took some time out, went and did some Dolphin Therapy (wahh! amazing!), took my anger out on a shooting range in America and came back feeling much calmer and clearer about what I wanted to do. I can now honestly say that I feel my renewed energy was what got me the new job. I have said on a number of occasions since starting it that it was just the change I needed and I haven't been as happy in a very long time.

I have found being positive following my experiences very hard. I haven't felt that 'life is amazing now because coming so close to not having it has given me perspective' type of feeling. And perhaps my British sensibility prevents me from shouting from the roof tops and saying 'WE'RE AMAZING' (Not so in America, but that's one for another thread!) BUT i think it's really important to show people on this site that life does change after bowel cancer. It doesn't always get better, or stays better if it does, but at least we can be honest about when things are good for a bit, or even for a while.

Thanks :x::x::x:


Well done frankie


Hi Frankie,

So true! Everything you say resonates with me. The dolphin therapy sounds wonderful, it has just gone on my *must do* list and as for the rifle shooting......... Lol!

I'm intruigued as to what your jobs were/are and so glad you've found one that makes you feel good.

May it continue for a long time!

Alison :x::x:


hi Frankie,

i am an old timer by comparison, at 63, i have had cancer to my knowledge for a year now , and had combined chemo and radio therapy over new year period and an operation in May and go next week to chat with the onco man about another 6 months chemo.

i worked till i was mid 40s as an employed person and then went self employed as a consultant in ITC and mamanagement. i did that for about 15 years flat out and then part time with some property development part time as well. the last few years i have just focused on the property and ended up doing ITC stuff for friends for free!!

lola suze chools and hazel have all made good points so i am just going to focus on aspects of doing consultancy work.

well i have to say the key thing for me over the years doing consultancy was the huge change in social life, going in to organizations helping them be more productive etc, well the boss might want it but the staff dont, certainly the middle management dont and so you are the enemy. so depending on what consultancy you do, it can be a lonely life and somewhat thankless. so the social life is a big thing. i jumped straight into it, so the first couple of years was very tough financially, second hand office kit etc , everything, old car etc etc. you have to make all your own arrangement, savings, pension arrangements, etc etc. also holidays are a mixed blessing, take a holiday or work? not sure when next contract might come along, keep working and have a break at end of current contract, but that ends up mid winter. i always wanted to work the winter and have a gap in the summer, it never happened !!

i have ended up keeping all my old friends in contact with me and each other, including folks abroad , arranging reunions etc. several from UNI days and also many from my 14 years in industry for one organisation, where i had a lot of really good friends and a great social life.

i have reached a point now that work doesn't concern me any more, i am quite philosophical and try to just focus on me and mine and improving a little each day and doing some useful things each day. at the same time i feel i have underachieved work wise and now have less opportunity to do anything about it. a bit silly at my age, but there we go , the old work ethic goes deep, especially for 2nd generation immigrant ( Irish )

i have such a big to do list that i cant shift it. i would like to take up sketching again , something i haven't done for over 20 years and also do some more music. i am slowly thinking about what i could do in a years time to earn some part time money (other than property as physically i will slow down), but not come up with any definite ideas yet.
one way or another i wont retire in the classical sense , i shall carry on doing stuff while my body and mind let me.

not sure if this is f any use but just another shared story and feelings and a different input.



wikey - at the risk of hijacking this thread, I think you are amazing, and hope you don't beat yourself up to much about pointless feelings of under-achievement, you know, saints do not live in palaces ... there is more than one way to achieve in this world, and material stuff is certainly over-rated in our society ..

reading your work-life summary here it stands out that you are a real people person, and I think you are the sort of guy who must be able to combine great people-skills with your other talents ... I bet lots of ppl have benefited from being able to work with you

I certainly warmed to you when we met -- even though you obviously know a lot about all sorts of things you wear that expertise very lightly, you pay attention to whoever you are with and really seem to listen and communicate in a delightful way ...

I really love that in someone.

I salute you and wish you a long and happy retirement



hi Suze,

thanks for the lovely comments ,

you have made my eyes water !!

enough said



I notice that i was in the middle of arranging retirement earlier in this thread. The deed was done and i have been retired for two months now.....how do i feel? there is a certain sense of not being a professional anymore and i liked being a good worker, however this has been supplemented by health in the workplace work for bbc and being on the forum to a degree. It is important i think to feel of use well it is for me, as for the work i am happy not to have to go in everyday and have tim ein my home i really cherish that. A friend who i worked with has diversified for a little while and i am paying him to sortout my garden and house which has been well worth the money. I can feel the tension easing as the house and garden start to look better and feel tidier. Not working does to a degree affect your feeling of worth and i think that is the biggest change for me, but ultimately i am enjoying the time and have no regrets about going for it. I understand your feelings about acheivement Mike but suze is spot on with her analysis!!
Frankie so glad to hear that things have worked out in terms of your employment and certainly interesting to read about your american adventures, hope to hear more.