Life after cancer

This group is for cancer survivors and people who have finished treatment. It is a space to discuss things like the physical and emotional after effects of cancer, returning to work, or trying to move on with your life.

Back to Work - Exhausted!

Sprog18
Posted by

Hi everyone

I was wondering how long it took you all to feel able to function at work in a 'normal' way??

I had a mastectomy in September and chemotherapy until the beginning of January.  I just finished my radiotherapy on Monday but still have the three weekly Herceptin injections.  I am self employed so worked a bit during the chemo until it got too hard and restarted a few weeks ago.

The trouble is I am exhausted after a couple of hours.  I work from home so I have to motivate myself but I really struggle.  I have project deadlines coming up and I am really behind.  How long did it take you to be able to function again and concentrate?  This is my issue really as I am working in finance and IT and I need to be really detail oriented.  These days I forget what I am doing halfway through!  

I also have lymphedema which tires me out when it gets bad.

I almost feel like I don't want to work anymore.  Even during the chemo I was motivated to do but now I think I would be quite happy just looking after my daughter and doing not a lot else!  But the projects I have are really interesting and I know I would regret not doing them.  I just want to do them properly not half heartedly.  Plus I need to earn money :)

Any tips for managing all this?  When did you restart work?  Was it tough or should I just give myself a kick in the behind??

Gill

slb8
Posted by

Hello Gill

I can relate to your experience of not being able to concentrate as this has been my experience as well.However  for yourself it seems really soon to be back at work and you might be expecting too much. Again I can relate as I am always questioning myself, and am  having to learn that I cannot do things as I once could. The impact of treatment can last for quite a period of time!  Indeed my oncologist looks at how are things a six months and then a year. 

At present you are very much still in recovery and one of the things I have learned is the need to reduce expectations of yourself. If you absolutely must work, what is the minimum you can do? You might have to think about how much you can take on, and do not judge your expectations from before treatment.

I quite like what someone told me at a Macmillan event there is BC- before cancer and AT- after treatment.  I am learning to accept that I will not be as I was before cancer, as I now have a new normal. Everyone is different in this respect.

In my case I had chemotherapy for 4 months, a short course of radiotherapy then two resection surgeries (liver and bowel) and then started a second lot of chemotherapy. All this took just over a year. I was completely exhausted for months after the second lot of chemotherapy and could not even contemplate going back to work.  I had a temporary stoma after my bowel surgery and I did not have the reversal until 6 months after the chemotherapy ended. I have lots of problems with my bowels so it took me a few months to even try to get back to work.  

I  started back at work in November, a year after my second chemotherapy. I am a university lecturer and need to read, am trying to write a paper and develop course materials, so like you need to be able to concentrate. While I am on a phased return, and working a lot from home, the foggy head and fatigue are really interfering with my ability to work and it is causing stress, which I am sure is compounding the issue. I did 4 hours of teaching this week, and it took me a day and a half to recover.

I also have to work with my polyneuropathy which effects my hands (typing) and feet and my continued bowel issues, but all these months on fatigue and what I call brain fog are the main issues.  I know i am not the worst case scenario post treatment but there are many who have had a better recovery.

Give yourself time!

Shelley

Shell

Kiwianna
Posted by

Hi,

poor thing, having to work versus being in paid sick leave is very tough, I am sorry.

in answer to how long it took for me to feel “normal”, I’d say about a year. I was shocked, to be honest. I kept flinging myself at life, at work, at targets etc, and couldn’t understand why I wasn’t successful. It was about a year (or a bit longer, maybe 14 months) before I realised one day I was fine, I was coping, I had come out of the fog.

i really resisted this slowness. It was not how I wanted to be and it didn’t reflect who I thought I was. Yes, I had cancer, now I intend to carry on as before. But I couldn’t. 

Im single, so had nobody encouraging me to take it easy, which might help? 

I’m now three years post-diagnosis. I’m still really surprised some people say I’m still in emotional recovery and should go easy on myself. I still don’t like the idea at all that cancer has stolen more of my years. It makes me cross!

Financially, if you have the energy, maybe consider tallying all your outgoings that could be argued .... council tax, etc. Some bills can be negotiated down if you’re seriously ill. It’s a small thing, a few quid off, rather than having the whole bill written off, but could buy you some more time.

Wishing you all the very best.

Rockfan
Posted by

Hi Gill

Wow you sound really motivated and you should be proud of yourself that you are trying to get back to work so full on and look after your daughter so soon after treatment.  My treatment finished in November 2018 and I didn't feel strong enough to work until the following April, approx 6 months.  I decided to concentrate on my two kids and saved my energy for time spent with them.  Although my prognosis was good I was still frightened at the whole thought of having had cancer and wanted to spend as much quality time with them as possible, making up for time lost while they were doing their A levels and GCSE's when I felt I couldn't support them as much as I wanted due to treatment. 

However I decided after six months to have a career change, although I loved my job it was a very stressful role in healthcare, and one which I didn't feel I could give 100% any longer.  This was a big decision to make at a time when I was still recovering physically and emotionally.  Being unable to concentrate and focus for a long period without getting tired was a big factor in my decision.   I did not know what I would do at this point, but hoped something would come up, inspire me and motivate me.

To help me recover I started swimming and from May last year I have swam just about everyday.  This has really helped with under arm lymphoedema which is no longer a problem for me.  I could only manage about 5 lengths to start and then had to rest afterwards before I could drive home and then rest again in the afternoon.   I now swim up to 80 lengths a day and no longer have to rest, but I still cannot believe how long it has taken to recover physically, it is literally like starting from ground zero. 

However my foggy head is only just clearing, 12 - 14 months after treatment ended.  Its like you want to be the person you were before, which for me was super organised working mum, which can be really frustrating when you can't. Now I realize I have to give myself time which includes sometimes being a little selfish and putting yourself first.  

We have had to do some serious budgeting over the last year however its been well worth it, having time for myself and my kids, they've been happy knowing I wouldn't be working too hard and have time to look after myself, so lessening their worry.  My daughter has gone off to Uni much happier and is doing well and my Son has settled down doing A levels.  For myself believe it or not I am going to be a swimming teacher,  I even have a job lined up, my course is in April, who would have thought, not me for sure.  Although I still have 'moments' of sadness and tears, which take me unawares, it can be song on the radio, thinking of my kids which triggers it.  I recover much more quickly now with a positive thought and a smile, cuddling the cat comes in handy too, I am finally looking forward to the future.

I suppose the main point I am trying to make is give yourself time, and focus on what is most important to you,  perhaps trying to adapt your job and look at budgeting for a year so you have time to rest and spend quality time with your daughter may be a way forward.  It's a long journey but if you go with the flow, start where your at and not where you want to be you never know what opportunities and changes may come your way.  

Hope this helps a little

Rockfan x

Sprog18
Posted by

Thank you all.  I feel much better knowing it is just normal.  

I am managing to work in spurts if I am careful to write everything down and take regular breaks.  Today was the longest I spent - around four and a half hours - and it was enough.  I think I can get this project done and then be more careful when I cost up other ones and give myself the time.

Rockfan - I am so glad to hear about your swimming.  I have always swum - I only stopped for the radiotherapy and I can't wait to start again.  I see the doctor Monday and if all is ok I can be back in the pool next week.  I will be building up slowly but it helps so much with the lymph.  I also went through a phase when I thought about being a swimming teacher but I live in France and it is much more complicated here.  I am sure you will love it.

Shelley - the effort it takes to concentrate is mindblowing for me. Luckily I can pace myself but still.  It is very frustrating.

I have not yet accepted the new normal.  I am sure that I will in time but I am still in the stage where I really don't know what the future holds and I feel like I want to make the best of now.  Spending time with my family, doing things I love and trying not to think too much about all that is happening.

I wish you all good luck with your future plans.

Gill

Galanthophile
Posted by

I just went back to work last week on reduced hours and even after 4 hours over 3 days I was shattered. I still don’t feel well and am awaiting another CT scan result 6 months after surgery. I don’t know how I am going to be able to work 9 hour days. My hours will increase an hour a week. The thought of feeling like this for at least another 6 months is daunting. Of course everyone at work thinks I’m ok 

Rockfan
Posted by

Hi Snowdrop 

Sorry to hear you are finding work so tough.  I don't know how long you had for recovery after treatment before returning to work but it sounds like you may have to go renegotiate your phased return, perhaps sticking to four hours for a while, then review, at least until after your CT scan  If you have a desk job you may not need so much time but if your job involves physical activity probably longer.  I learnt to accept where I was physically and emotionally, sometimes not being able to concentrate and think and work with that rather than try to push too hard and exhaust myself and get frustrated.  It is a long road to full recovery and I have found it is not linear, when I think I am ok I can hit another road block and feel as if I have not progressed.  But I remind myself I have and just chill that's all you can do.  I also think you heal on the outside and look 'ok (ish) quite quickly but it takes longer to heal on the inside both physically and emotionally, that's probably why your colleagues think your ok.  Perhaps you could talk to them so they understand, I know this may not be possible, if not I hope you can put yourself first and not worry about what they think when you have to take some time out.  

Hope this helps

Good Luck

Rockfan

Galanthophile
Posted by

Thanks for your concern. I’ve now (after 2 weeks) been allocated a new, young inexperienced male manager because he needs experience managing staff.. I will explain to him as well as I can what the effects of cancer are. I really think most people haven’t got a clue. When I said I couldn’t do long journeys he suggested I sleep in the car.. I had to explain that it is fatigue I am experiencing not sleepiness. It all depends on the outcome of the scan. If I’m off sick again I will go onto half pay but if that is what happens I will have to manage. Will see how it goes!

x

Thehighlander
Posted by

There is a good Macmillan Guide Book - Managing Cancer in the Workplace.

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela