Are you disabled by your cancer treatment?

Cancer patients' 'misery at work'
By Michael O'Connor, BBC News
quote:
Some cancer patients are facing unfair dismissal and discrimination at work, a BBC investigation has revealed. Some have even been sacked after being refused time off for treatment.

A new law which came into force at the end of last year has given much stronger protection at work to people with serious illnesses like cancer. But the Disability Rights Commission said 200 cancer patients had called its helpline this year complaining of problems at work. The commission said these cases are the tip of the iceberg and many more seriously-ill patients are still unaware of their rights.

Disability law - who is covered?

The Disability Discrimination Act, which came into force in December 2005, gives people with cancer and other serious diseases such as multiple sclerosis the right not to be treated unfairly at work because of their condition.

Under the new laws employers must make changes to people's working arrangements, such as time off for treatment or reduced working hours.

These changes - called 'reasonable adjustments' - should ensure cancer patients can return to work in some capacity. But many people say they have not been offered this option.
more ....
Patients quitting jobs after treatment for head and neck cancer

from SpiritIndia.com:
quote:

Head and Neck Cancer :: Patients quitting jobs after treatment for head and neck cancer

After treatment, 38.1 percent of patients with head and neck cancer who were employed at the time of cancer diagnosis reported discontinuing work because of their cancer and treatment, according to a report in the May issue of Archives of Otolaryngology—Head & Neck Surgery, one of the JAMA/Archives journals.


“Although most cancer survivors who are of working age who want to return to work are able to do so, cancer survivors experience significantly more work-related problems owing to missed work days than the general population, and the economic consequences for those who are disabled following cancer treatment are a substantial societal burden,” the authors note.

Those with head and neck cancer have the third highest rate of discontinuing employment because of their illness when compared to patients with other types of cancer.

Andrea E. Buckwalter, B.S., of the University of Iowa, Iowa City, and colleagues analyzed 666 patients with head and neck cancer who were treated from 1998 to 2004. The patients provided information about their employment status at the time of diagnosis and then at three, six, nine and 12 months after. Those who discontinued employment also rated the importance of five factors (eating, speech, appearance, pain or discomfort and fatigue) in their decision to stop working. The factors were scored on a five-point scale with five being the most important and one being the least important.

Of the 666 patients, 440 were men and 431 were younger than 65 years. Before treatment, 239 (35.9 percent) were employed, 337 (50.6 percent) were not employed and 23 (3.5 percent) were never employed. Of those who were employed at the time of cancer diagnosis, 91 (38.1 percent) [68 men and 23 women] discontinued work because of their cancer and treatment and 37 (40.7 percent) of those who had left their jobs returned to work within the first year. A higher percentage of patients who discontinued employment had advanced-stage disease (78 percent) and were treated with multimodality therapy such as surgery, radiation therapy and chemotherapy, (64 percent), compared with those who continued to work.

“Fatigue had the highest percentage (58.5 percent) of 4 or 5 ratings, followed by speech (51.2 percent), eating (45.1 percent), pain or discomfort (37.8 percent) and appearance (17.1 percent),” the authors write. Among those who returned to work, there were no significant differences in the ranking of factors, but there was a significantly higher number of patients who did not return to work who reported speech and eating as important factors in their decision to discontinue work. Women rated speech, appearance and pain as more important factors in quitting their jobs than men. Appearance was of relatively little importance for both men and women.

“This study demonstrates that fatigue is a parameter that will likely assume a greater importance in head and neck cancer outcome evaluation,” the authors conclude. “Identification of the patient-reported factors associated with the decision to discontinue employment is a first step in providing more useful information about employment to patients and identifying interventions to minimize the disability following treatment for head and neck cancer.”
I think that the survey should have gone beyond a year. It took longer than that for me to be able to stay awake long enough to get up in the morning, eat breakfast, shower, dress, put on my makeup, do my hair, without considering driving to work, working all day then driving home. The fatigue was crushing, and nobody prepared me for that.
I'm feeling much better now, and I have loads more energy, but it definitely took a year until I could even consider returning to work, and 18 months after the end of my treatment I can still see that I have quite a way to go before I return to my full level of fitness.
For me, i HAD to return to work for my own sanity. & i returned to work 4&half months after finnishing treatment. I was becoming very depressed & i think a bit agrophobic. I'd talk myself out of leaving the house at every oppertunity. I feel that going back to work ewhen i did helped no end with the fatigue and building my muscle stregnth. & although i get really exhausted by the end of the day emotionaly i feel great! It's really hard work keeping house, working full time, looking after the other half & pets ASWELL as trying to have to resemblance of a social life & see the family! But every week i notice i'm a little stronger physically. I can lift the 25kg sacks of food now, when i started back i couldn't manage the 2.5kg bags! My legs don't ache as much either.
I do find eating at work a big pain in the butt! Not being able to snack or have sandwiches for lunch. I usually have salad with lots of dressing. Ok, hands up sometimes the hassel of eating at work is more than its worth and sometimes i just get by on hot chocolate! Bad i know when i'm supposed to be putting the weight ON. Occasionaly i'll just have a cup-a-soup or something.
The nerve damage was limiting at first - i couldn't catch the animals cuz i didn't want to crush them (not knowing how hard my grip was) & not being able to write is a little debilitating.
But mainly, i don't know how people can AFFORD to stay off work! I'm 23 - i have a mortgage - i have my pets - & the DWA make you jump through hoops to get any kind of benefit! when my SSP ran out i went on to incapacity benefit. £70 a week! Didn't even come close to covering my mortgage! I had to rely on top ups from family so i'm having to pay them back. I got refused Dissability Living Allowance TWICE even though i had a letter written from my Macmillan nurse & oncologist. It's DISGRACEFUL that you pay your National Insurance & then have to scrape by & potentialy loose your home! Soapbox
Ok, enough ranting...
Michelle
you have done really well to do what you are doing work ,home ect

I dont know how dissabled you have to be in order to claim DLA its discracefull

how you never recieved it is behond disbelief

I suppose they proberly turn everyone down and hope they dont pursue it
look after yourself
Dave and Sue
After jaw removal, neck dissection and two futher remidal operations (last one nine weeks ago)I don't know how I am going to fare for work. Still have RT to face and so obviously don't know how that is going to affect me either. Have bad facial disfigurement,restricted movement in my neck, left arm will not lift more than half way, speech not good, very hard to make myself understood by telephone, walk with stick (nerve damage to foot when removing bone to replace jaw)cannot eat, am still peg fed and have a constant drool. I know this will disapear with RT, but at the moment could beat any perve in a dirty mac hands down! Then of course we all know about the fatigue we all try to overcome!
Benifits here in Ireland are slightly different from the UK. At the moment I receive E185.00 a week Illness benifit. I have applied twice for Invalidity Benifit where you get the added bonus of a bus pass (helpful when going for appointments and treatment)(I dont trust myself to drive safely yet)fuel allowance, phone allowance and a few other bits which add up to be very helpful) but have been refused twice. At the insistance of my local Social Welfare office I have applied yet again. Watch this space!
Mentally some days I feel if I am losing brain power altogether and sometimes wonder if I am going to end up cabbaged. It's great to visit here and find that I'm not the only one going through this and there are success storys and light at the end of the tunnel.
SusieR.
Susie, keep going you have had a lot to cope with. You MUST do your exercises for neck and arm. After my neck dissection I couldn't lift my arm at all and movement in my neck was very one dimensional. But I kept at my exercises and now can play tennis and golf.Still have stiffness in neck and left arm is much weaker but I still believe it will get even better! Neck is a problem again after having surgery on my scar. But that will soon recover.
Are you any good at puzzles? I didn't think I was but have become addicted! Keeps the brain going!
Good luck with the R/T. When does it start?
Anne
Of the 26 participants so far:
  • Only 12 or 27% are now unable to work or find a job
  • 12 or 46% have had to work less in the same or different job
  • 7 or 27% have continued to work as before


This would mean that 24 or 73% have experienced a drop in income and perhaps required financial assistance. Frowner
I returned to work 8 months after completing surgery, radiation and chemotherapy for a stage 4 neck cancer. I am now considering going back on disability as I find myself increasingly fatigued. My job demands travel and when I travel I eat very poorly. I lost 65 pounds during treatment and was at about 125 lbs at completion. I'm now at 141 but lose weight each time I travel. Also, I find that I am not as mentally sharp as I was prior to treatment although I feel that in time, I will be. All in all, it is about energy levels; however, constant sinus infections haven't helped the situation. I am 62 years old.
I returned four months after chemo and radio treatment finished in order to keep my job. I do manage sandwiches, providing the filling is moist and eat fillings like bean pate or seafood sticks and mashed avocado.

I try and keep my energy levels up by eating healthily and dancing at least once a week - rock and roll, jive, east coast swing, salsa, cha cha and quick step. I consider myself very lucky and am particularly grateful to all the dancers who drove me to chemo and radiotherapy sessions, Royal Marsden and St. Georges.

Luckily, I managed to crawl back to work just about the time I was going to be put on incapacity benefit. Laughter is the best medicine and looking for beauty everywhere - goldfinches on the bird feeder do it for me. Hope this is an inspiration for somebody!!

Chris

quote:
Originally posted by Chelle:
For me, i HAD to return to work for my own sanity. & i returned to work 4&half months after finnishing treatment. I was becoming very depressed & i think a bit agrophobic. I'd talk myself out of leaving the house at every oppertunity. I feel that going back to work ewhen i did helped no end with the fatigue and building my muscle stregnth. & although i get really exhausted by the end of the day emotionaly i feel great! It's really hard work keeping house, working full time, looking after the other half & pets ASWELL as trying to have to resemblance of a social life & see the family! But every week i notice i'm a little stronger physically. I can lift the 25kg sacks of food now, when i started back i couldn't manage the 2.5kg bags! My legs don't ache as much either.
I do find eating at work a big pain in the butt! Not being able to snack or have sandwiches for lunch. I usually have salad with lots of dressing. Ok, hands up sometimes the hassel of eating at work is more than its worth and sometimes i just get by on hot chocolate! Bad i know when i'm supposed to be putting the weight ON. Occasionaly i'll just have a cup-a-soup or something.
The nerve damage was limiting at first - i couldn't catch the animals cuz i didn't want to crush them (not knowing how hard my grip was) & not being able to write is a little debilitating.
But mainly, i don't know how people can AFFORD to stay off work! I'm 23 - i have a mortgage - i have my pets - & the DWA make you jump through hoops to get any kind of benefit! when my SSP ran out i went on to incapacity benefit. £70 a week! Didn't even come close to covering my mortgage! I had to rely on top ups from family so i'm having to pay them back. I got refused Dissability Living Allowance TWICE even though i had a letter written from my Macmillan nurse & oncologist. It's DISGRACEFUL that you pay your National Insurance & then have to scrape by & potentialy loose your home! Soapbox
Ok, enough ranting...
Hi,

I had 20 fractions of radiotherapy combined with 2 bouts of chemo in Nov 2007. I had a peg fitted prior to treatment - which helped me nutritionally when I needed it. I was back at work on a phased in capacity 3 months post treatment, full time by 4 months post surgery....so far so good. Cheers all ngary

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