Return to work - physical hardship

Sabran65

Hello all,

This is my first time writing here and I am feeling overwhelmed and desperate for some consolation.

I don’t know who to turn to because the ‘Non cancer ‘ family and friends around me don’t really understand what am currently going through, although they always show their love and support.

My first week back at work and I worked for only two day.  Both times I struggled, my body developed immense pain and the lethargy ‘smashed’ me the next day after working. It took me a couple of days to improve upon which i then worked another day. And again, I am feeling achy, tired like I have been hit by a bus.  

I don’t know who to talk to and I am hoping that maybe someone else has experienced this.  

I believe that the commute to work and the fact that I am carrying a packpack (which is a little heavy) with my laptop etc?

Hope you can bring some light to my situation.

Love and hugs
Sabrina 

kmakm

Hi Sabrina. I think that what you are experiencing is not unusual. I have not had the opportunity to return to paid employ but I have a household of seven (and two dogs), and once active treatment was over (though for me I would argue that Letrozole is still active treatment) I had to return to work in the house. The bottom line is, I cannot currently do all that I was doing before.

For example on Sunday we all got up early to go out for a Father's Day breakfast for my husband. When we got home everyone sat down but I stood, worked out what I was going to cook for the family's Father's Day dinner for my dad. Then I made the shopping list, shopped, spent the afternoon and early evening preparing the meal (for eleven). This included making a special dessert with my youngest because the day was also her deceased mother's birthday. By the end of the day I was sore from top to toe and comprehensively exhausted. I took a Targin for the high pain levels in my legs and hands, and slept, waking six times that night. The next day I exercised, had a magnesium flakes bath and had to leave everyone to fend for themselves for dinner because I could barely get off the sofa. I didn't feel recovered to my 'new (crappy) normal' until Thursday. It's hard for me to accept these limitations at only 53 but I don't have a choice. I am weakened, but alive. That's the deal with BC treatment.

Our bodies go through a LOT when we have cancer, especially if that includes chemotherapy. It takes years to recover, if ever, and this can be lengthened by adverse reactions to the AI/Tamoxifen if you have to take those.

Broadly, the population understands lumpectomy/mastectomy/chemo/radiation therapy but beyond that, you're understood to be cured and back to 'normal'. I didn't know about peripheral neuropathy before I had BC, or about how chemo destroys your muscles, or the insane array of difficult side effects endocrine therapies can give you. I didn't know that some breast cancers can return years later.

Some people report very accommodating and understanding workplaces for the return to work period. This often seems to depend on if the boss has had close experience of cancer or not.

People just don't get it, not the least ourselves when we first try the resumption of 'normal' life!

@Sister may be able to shed some light on your experience of the workplace after treatment.

So, be kind to yourself. Don't demand or expect too much of yourself too soon. Learn how to pace yourself and read the warning signs that your body gives you. Time. It all takes time.

Biggest of hugs, K xox

Afraser

I didn’t have this problem, didn’t take leave really, but as @kmakm says, it’s all too common. If you can take one day a week at first that may help. You may also be quite anxious about return and this can easily add to your fatigue. Some counselling about how to best husband your energies may be useful if you can find a good counsellor. Even without fatigue or pain, some good ‘not family’ advice can be very useful as you negotiate whatever your new normal may be. Best wishes. ’ 

iserbrown

Don't be too hard on yourself!  It's an adjustment both physically and emotionally.  For me it was the fatigue that I had to learn to roll with

https://www.cancervic.org.au/living-with-cancer/common-side-effects/fatigue

Take care and be kind to yourself 

primek

I was incredibly impacted by chemotherapy and it was 8 weeks before I returned to work. I went back at half time...but only 4 hours per day. I needed to come home and sleep for an hour after. It took me 6 months to get back to full time work.
After chemo I started letrozole. I had pain in my ankles, knees and feet. I needed panadol osteo to cope regularly and started fish oil. Around 6 months I was able to stop tbe panadol but kept on with fish oil.
I used to try and fit in short 10 minute brisk walks a few times a day to help regain my fitness. 
I was still on herceptin when I returned.
I did have a compromised cardiac function for a while which contributed to the tiredness. 

Are you on any medications still?  What treatment abd surgery did you have and when did it finish? Are you managing pain with pain meds. How's your sleep pattern?

Lots of things could be impacting.

Sister

I work in a school, finished chemo & rads towards the end of Term 3, then went back in Term 4.  In hindsight, way too early for me.  Exhaustion to crying levels and work was all I could manage.  After work and weekends were all about recuperating for the following week.  It has gradually gotten better but I still get damn tired and it's been almost a year.  Although I have a very supportive workplace and my family are great, I don't think anyone on the outside really understands the levels of fatigue.  And sometimes it's not just tiredness but the need to lay down and get the pressure off my legs which often ache so badly at the end of the day.  So, try to be as kind to yourself as you can and remember that it's all baby steps.

Zoffiel

It can be very hard. I worked through my first cancer treatment in 2006 and had a reasonably easy time. Cancer treatment number 2 was a different thing altogether. 
I'm just over 2 years out from 'active' treatment but still prone to fits of extreme fatigue. It's getting better, but it's almost like dealing with a monster hangover. Terribly tired, everything hurts  and I'm inclined to try to 'fix' it by gorging on inappropriate food and attempting to nap in the car before driving home.
The 'everyone is different' mantra is all well and good but not terribly helpful. Mt best advice is to try to get some exercise and do things that bring a smile to your dial, if only for a few minutes a day. Were told that exercise is good, which I believe is true, even though it feels like a counter intuitive thing when all you want to do is lie on the couch and moan with exhaustion. People who haven't experienced this don't get it. Hang in there and keep plodding. Mxx

Flaneuse

@Sabran65 Nobody in the "non-cancer" world understands, no matter how much they try. It's frustrating, but even the most well-meaning can offend with what they think are helpful comments, such as "you're getting back to being completely the old you" or "back to normal". I used to become annoyed, but now I try to just push it aside and accept that it's impossible for anyone to understand if they've not been here themselves.
The Cancer Council offers telephone counselling, 131120 and I found the nurse counsellor I had very good. Some of my need for counselling related to how my adult children were dealing with my situation.
I was fortunate in that, diagnosed at 74, I didn't have to work - though I felt bereft because my supe-active lifestyle was interrupted. I had surgery, chemo, radiation, four months on Letrozole then stopped it, then second (revision) surgery to remove reconstruction, a month ago. 21 months on from diagnosis, I have to acknowledge I'm not as robust as I was. I still need a nap most afternoons and sometimes those "naps" last two hours or more.
Is there any way you could use a wheelie-bag instead of backpack to transport your laptop and stuff?
Everything @kmakm has said, and the other ladies, too.
Don't expect too much of yourself. You have a lot to go through yet. Be kind to yourself in preparation for all that.
Big hug.

Sabran65

Thank you all for your responses  . I am scheduled to see my GP on Monday and I have also decided to work from home on Monday.  i thought that I was ready for work as my pain had reduced and I have been participating in group exercises with a Physiotherapist. I was feeling stronger and my mind clearer. 

I feel soo unwell now that it reminds me of how I felt soon after I completed my chemo.   I would like to try a wheely suitcase to carry my laptop and avoid using a back pack and I think that I might even use a small handbag to replace my regular handbag.

Love & hugs

Annie C

@Sabran65

I was once a backpack user, however my "wheely" bag is the best bag I have bought. It is big enough to hold a variety of items but small enough to go in the overhead lockers on a plane and doubles as an almost stylish handbag.

Whenever I have to fly to Perth for scans / treatment it holds my medications, a complete change of clothes
( I don't trust airlines and baggage) and all my other "essentials" (tablet, phone, book, wallet, purse).

It is great to put shopping in on the way back to the accomodation from appointments and is easy to lift or carry.

I sound like an advert for the bag stores!

Michele B

@Sabran65,
I totally get it. I was fortunate enough to escape chemo but had lumpectomy,  33 rounds of radio, 4 yearsof tamoxifen and now on anastrozole. 

I worked as much as i could through treatment, taking days off when i was exhausted, then returned full time to primary teaching. 

Even almost 5 years out, there are some days i am just so god damned tired, i  could just cry!! I honestly don't think anyone understand just that to the bone exhaustion that we feel.

Over the past couple of years, i have received some fabulous support from here that has helped. I try to cook as much as i can on aweekend in preparation for week ahead. Try to fit in a walk whenever i can. I find a lunchtime walk with a colleague is best when i can. It energises me to get thru the afternoon, and then i dont feel guilty when I am too tired to exwrcise after work.

Take good care of ypurself and try to prioritise some time for yourself. 
Best wishes, Michele xx

arpie

@Sabran65 - the ladies have pretty well covered it all, I reckon - and they are right - be kind to yourself.  You can't be expected to maintain the same routine & level of work as before your treatment.  It will take time & you need to gradually get back into it.

Whereabouts are you?  (Town/City?)  Our members may be able to point you towards some local facilities that may assist you.  You can add it to your 'profile' too.

Also - have a look at the Otis Foundation Website - they have access to many 'Holiday Homes' that people only use for a few weeks of the year - and the owners have kindly made their Holiday House available to Breast Cancer patients for a 'holiday' at no fee (other than getting there & providing your own food.)  Everything else is covered - bedding, towels - everything.

Victoria have 10 locations, NSW 9, Qld 6, Sth Australia 4, NT 1, WA 2 and I believe Tasmania has 1 coming available soon.

https://www.otisfoundation.org.au/directory

I had a break in the Snowy Mountains in April - and it was just wonderful!  It sounds like you may well benefit from a break away!  You can take family members or friends with you - I took my brother & sister in law.  They loved it too.

All the best - I hope you can find a happy 'medium' - working from home sounds a terrific option!!  Yes - we may 'think' we are ready to face the world after our active treatment finishes - but it really isn't 'that easy'.  Take care xx

Vangirl

I took 9 months off last year while I had chemo, radio and surgery. I was raring to return to work (full time, no other option) in January but was absolutely exhausted the first few weeks back. It's gradually improving but slowly. I have to use time outside of work for just rest, rest and more rest.