Returning to work

primek

I went into work today to give them another certificate for a month off work.

I finished chemo 3 weeks ago and was expecting to be able to return this week but am struggling with the fatigue.  I have good days then have really bad days.

The trouble is I feel a bit unsupported. My Dr thinks it is all just about mental health so is sending me to a psychologist...despite an average result in mood measuring (and this was just after gene testing).  My boss even though is trying to act supportive I just feel isn't.  They just don't  get it. Chemo over so what's the issue?

I've  worked myself to breaking point in the past...and I will not do that again ever. But the guilt of looking after me is compounded  by my thoughts peope just think I am making it up. Well I am guessing this of course. Why don't  people get it? The problem is ...well..I am not dreadfully thin...in fact gained lots of weight on chemo...so don't  look sick. I wore makeup throughout treatment so always had a healthy glow. I guess it's like a hidden disability.

Talking about it just makes you sound like a whinger. I've  even posted fatigue links after chemo on facebook but it doesn't  seemed to have helped.

Anyone have any suggestions for improving fatigue and having others understand.

I am attempting  exercise at least every 2nd day. Hoping to get to daily soon.

Thanks
Kath

Deanne

Hi Kath,
Gee, 3 weeks is nothing in terms of recovering from chemo! It does take time (they say at least the time that you were undergoing treatment, although for me I think it took a bit longer!) and you are wise to stick to your instincts on this. I remember my surgeon saying that they usually give people 6 months off work but I was undergoing treatment for 7 so that was not enough for me.

It is a very individual thing and I think it helps to negotiate a part time return if you can. I am very interested to hear if anyone else has any ideas on how to help others realise what fatigue is really like. I found that like you say, if you look ok people just don't understand unless they have experienced it too.

Exercise and eating well are the two things that helped me to get over the fatigue the best. With the exercise I think it helped me to do it daily even if just for very short times at first (just a 20 minute walk, but every day). The main thing is to listen to your body and take things at your own pace. Try not to let the pressure from others get to you. Fatigue is a very valid side effect of treatment, even if others don't really get this. Hope someone has some brilliant suggestions about educating others! 

Deanne xxx

rowdy

I hear you people think that when you finish active treatment that you should be back to normal. I really struggled for a while feeling I had to tell people I was well when I was still struggling. The fatigue was hard to cope with, I tried to exercise but lacked motivation. I finally started to get back on track and then had to have surgery on my knee and back to doing very little as difficult to walk. I have gone back to my counsellor, and I keep putting one foot in front of the other and try  not to put pressure on myself.

InkPetal

primek said:

My Dr thinks it is all just about mental health ... They just don't  get it. Chemo over so what's the issue?

... the guilt of looking after me is compounded  by my thoughts people just think I am making it up.
...in fact gained lots of weight on chemo...so don't  look sick. I wore makeup throughout treatment so always had a healthy glow. I guess it's like a hidden disability.

All these points. I feel this post so much! "Yes! Exactly! I know!" through the whole thing.

People don't seem to understand that you never fully recover, from immune system to bone strength and little things that hang around and just become these permanent fixtures - like fatigue. I mean, some women spend years in pain after their mastectomies but it's like people have a switch in their brain that goes to labeling your condition as [cancer] or [healthy] but nothing in between. 

Honestly, "But you look so healthy" has been my second most hated thing to hear next to "You'll be fine". 

It wasn't a head cold, it was cancer treatment and it really is like people struggle to grasp it. Yeah, I've gone up just under 2 dress sizes myself despite doing all the exercise my body would allow and a calorie controlled diet. My GP and oncologist tell me it's really common thing to happen. I think people just haven't adjusted from the horror of up through the 90s when chemo reduced people to skeletal shadows of themselves. I feel like making up a card to hand people who just don't get it so I don't have to explain that it isn't 1999. This idea 'chemo is chemo' and the same for everyone (even though there are extremes of being virtually unaffected to having to put a complete pause on life as you knew it) really annoys me too.

Three weeks after is game! It took me that long to have only almost recovered from a round! I'm sitting here in the middle of week 3 after and struggling to walk because my feet are so swollen. My oncologist told me that after the last one it would take me at least 6 weeks to feel 80% normal. You did exactly the right thing for you. You recover. Eff'm.


I'm sorry I don't have any tips for fatigue management. There's a page on the website with some advice though.

• BCNA Website Fatigue page.

primek

Thankyou Inkpetal. Actually I read that page and have started to do a few things ...like pacing myself...and sitting down for things. ..like food prep for cooking. My Mum did this a lot with chronic arthritis and every time I do it now it makes ne think of her and how she lived with fatigue daily. ..but still coped....and how we didn't  really appreciate it either.

primek

My new line I decided today when people ask me is .... " I am as well as can be expected and making progress"  The responses have been quite different.

InkPetal

Ooh, I love that.

Melhay

Hi Kath, really sorry to hear you've experienced this type dismissive attitude & social stigma.

My Breast cancer treatments haven't included Chemo so I can't say I know what the fatigue is like.

As a Mum & carer of a teen with chronic mental health issues I've certainly encountered the dismissive attitude & social stigma you speak of though many times - both in the medical system & out in public. 

I soon realised that I couldn't change people's perceptions - only my reaction to them.

Sounds like since you wrote the post you're already moving forward with your new response, being proactive in pacing yourself & reflecting on how your Mum coped with her own fatigue - good for you xx

iserbrown

Hi Your instinct is spot on. This is about you for the long run. Fatigue is real and can be frustrating. Take time to slowly gather yourself. No magical cures that I have found except to say my acceptance of the fatigue rather than fighting it has helped. Taking a walk in the fresh air and soaking up the sun helps. I spend abt 15 mins in the arvo collecting the eggs and enjoying my garden. Destress time. 
Don't feel pressued abt work. 
You are the most important 
Take care sending you a virtual hug from Christine xx 

melclarity

Kath!!
Gosh I totally concur!!!! I finished in December and I work in Education so fortunately didnt go back to work til end of January so roughly 6 weeks and I only went back 3 days. We are now September and I can honestly say I am not coping with 3 days...my job is extremely demanding with Autistic Children and Im a single parent as well. I am lucky that Income protection looks after the 2 days Ive lost a week. But in all honesty!!! I want to stop have 6 months off.

NOBODY gets it, in fact I saw my Oncologist last week, he tells me my Bone Density is poor, I have osteoporosis in my spine thanks to treatment yippee!!! LOL I say Im not coping with work, he supports my reduced capacity but I said next year I want time off and he basically said I wasnt in treatment so couldnt do much. Ummmm??? NOBODY understands the side effects and how it takes a minimum of a year or more to recover from Chemo...

I too used to work myself into the ground with work and I do not anymore!! frustrated big time as I have surgery pending so as much as I want to stop and try and fully recover not sure where to from here. The support isnt there, so Ive worked out...just do what suits me and look after me above all of it. Nothing is more important anymore....certainly no job!!! 
Hugs Melinda xo

DoubleD

Hi

I felt so angry after reading your post. How ridiculous is your doctor?! I suggest finding a doctor who has some understanding of the effects of cancer treatment and some compassion.

I finished chemo exactly12 months ago. Had radiotherapy to chest and spine after that and still having 3 weekly Herceptin and pertuzumab. I started my return to work at the end of February and although things are much improved I am only working three 6 hour shifts a week instead of four 10 hour shifts which I worked pre-treatment. And I'm tired!!!!!

I recently spoke to my gorgeous oncologist about this and he says it's recognised that post-chemo tiredness can last up to 2 YEARS after completion of treatment so expecting you to be fine after 3 weeks is ludicrous. Research is currently being done to try to identify exactly why this happens and why it affects some people rather than others.

I am fortunate in having a great GP who supports me and has stopped me from being unrealistic. Most of my friends are doctors and none of them think I should be doing more than I am at present. I am trying and find it frustrating but I've realised that my body will just say no if I overdo work and it takes 10 days to get back to where I was.

I strongly advise you find a better doctor!

PS I am an Emergency Department doctor myself but my understanding of the effects of cancer treatments is from my personal experiences and those I have met on this journey

prudencerose

Hi. I too finished six months of chemo , three weeks ago. I'm not sure if I've caught a cold because I have a cough and feel like I used to as a kid when I would have asthma. I am also aching enough to take Panadol and sleep for part of most days; something I didn't do much of during chemo. ( Panadol that is; I slept a lot) My muscles feel so weak! It's not what I expected; I expected to be starting to feel normal by now! I start radiotherapy on Monday and am a little worried. 

primek

Received my heart scan results and it has dropped to 44%. Unfortunately received after this chemo cycle. So treatment with Herceptin stops for a while. So....Breathlessness and tiredness make even more sense now. I will be asking that they send a letter to my GP so they have all info.

Johnann

Hi everyone. I agree with everything that's been said. I finished chemo July last year and radio a year ago. Today I am exhausted and fatigue is still a big part of my life, not to mention lymphoedema. I'm still on a graduated return to work but because I don't look sick I'm overloaded with work. I too over did it pre cancer and don't want to fall back into that. Like you all, I'm conscientious but feel that goes against me. Im sorry I don't have any answers or tips. Keep on keeping on. Thinking of you all and sending healing and relaxing thoughts xxx

primek

@DoubleD. I did feel my Dr was being compassionate but as I have had a history of depression (after horrendous workplace bullying and ridiculous workloads. ..I now work elsewhere), I guess she is being cautious. It can be frustrating when you have genuine physical issues but it gets passed over as mental health issues. But being a Nurse  (and previously a Nurse Unit Manager ) I persist. I will discuss the fatigue with my oncologist ..who I would of had do my certificate but there was a 10 day gap I needed sorting. I'm  okay seeing a psychologist. .as it won't  hurt to discuss some family dynamics...but won't of course give me energy. I guess really she couldn't help with the other. That takes time I guess.

melclarity

Kath! Goodness well I think you have every reason to insist on more than a month off and with your latest heart scan results particularly! I actually found a component of income protection in one of my Supers, was a long process but I was approved and they now pay the 2 days I don't work up to 85% and will do until Jan 2018. 

Johnann - I agree, this week Im beyond fatigued and only worked 2 days. Im collapsing the minute I get home but having to get up and keep going being a single parent. I have no support and everyone thinks your long past treatment your OK and back to normal!!! 

I have a holiday pending next month, so will go and when I come back I'll have direction of surgery and then I want to stop working completely for a whole year if my income protection will cover it. I deserve it and I want to put me FIRST to hell with work after all these years and nearly killing myself....makes no difference. So everything is on my terms now. I want to recover and for me that would be a dream to not have to worry about work, concentrate on me, my health and kids. 

Hugs xoxoxo