Return to work post treatment? what sort of timeframe was your experience?

[angieh]

Hello, I am just starting week 6 of my treatment for throat cancer (Cisplatin x 3, plus 35 radiation, total 7 weeks, P16 positive).  I know I have a tough few weeks ahead of me yet to come plus recovery. 

I would really value some information from those of you who have been through this as to how long it was until you were able to return to work in some capacity.

Thank you in advance for sharing that info with me.

Angela? 

[sch]

Hi Angieh,

Hopefully someone will be along soon who has been through a similar cancer and treatment.

Your surgeon should be able to give you some idea of how long you should take off. Have you asked her/him?

How are you going so a far?

When is your surgery scheduled for?

Best of luck!

S

[ShaundenBakker]

Hi Angela,

I returned to work after 5 months. Throat cancer chemo and radiation. Getting back to work was the best thing I could’ve done at the time to take my mind off the cancer thing, although still coping with the side effects was tough. You may be different. Hang in there.

Shaun

[angieh]

Hi Shaun,

thanks for your reply.

5 months does seem like a long time but I realise I am probably being over-ambitious. I have found myself improving a little each day once I got 8 days past last treatment. I am hoping that continues each day from this point onwards. 

I am very bored mentally and sick of tv.  I won't know if the treatment has been successful for at least 3 months, and could be longer of course, depending on the PET scan.  And I seriously don't want to spend the next 3 months leading up to the PET scan, just continually thinking about myself and cancer. It is not good for my mental health.

I am lucky in that my company will accommodate whatever I need, so I have the option to go back just part time hours and then increase slowly when I am ready for full time again.  It's all office work, teleconferences, desktop auditing type stuff and is not physically taxing at all.  I think the hardest physical part will be getting dressed each morning and taking bus to city (assuming the Covid lockdown ends and people return to working in offices again).

My current thoughts are returning at 20 hrs pw (5 hrs each day x 4 days) in another month or so.  I don't have to decide anything for another couple of weeks though. 

Did you go back to full time or part time? And is your job physical?  Can I also ask if you had the PEG tube and if so, how long it was before you could eat again? (I can't taste anything currently but it is really my mouth ulcers that prevent me from eating. All I can manage currently is oats with lots of milk in the morning. All other meals are via PEG.

thank you for any info you can provide,

Angela

[ShaundenBakker]

Angela,

I was 58 at the time my 30x5 mm oropharynx malignancy, base of tongue, was treated with chemo x7 and radio x35 (no operation) over the Xmas period of 2015/16 at Peter Mac in Melbourne. I was fed by nasal tube for approx 10-12 weeks during and after - all up.

My PET scans were on completion of treatments and again at 12 months on. Since then I've been on quarterly surveillance checks. No nausea or loss of hair during treatments, then at 30 months I lost pretty much most of my hair - total body. Below is my recovery snapshot from October last year after I finally made the decision to stop working;

• Alopecia – is in my case “the straw that broke the camels back.” Since its onset approx. March 2018, trying to work full time took on a whole new level, in that I tried coping with the daily total body feeling of sticky/ sensitive skin, feeling of puffiness from nose level to the top of my head (particularly eyes), light headedness and cold, leading me to give up work on the 21/8/2019.
• Burnt skin sensation – onset at the same time as the alopecia. Arms, shoulders and feet. Originally occurring each morning and subsiding say by 3-4 PM. Now seems to occur only when highly stressed/ anxious generally wearing off within an hour or two.
• Throat – lump/ obstruction still constantly present and taxing. Flemm, mucus, food causes me to try clearing often, mostly to no avail.
• Neuropathies – both feet and left hand. Constant feeling of numbness and cold
• Taste buds – may be approx. 70%. Causes loss of appetite to the point where I eat by the clock, not because I am hungry and enthusiastic
• Dry mouth – affecting appetite also. Choice of foods is an issue. Time needed to eat is a problem
• Teeth – 4 top major molars (2 each side) extracted prior to cancer treatments commencing. The plate provided is ill fitting causing discomfort when eating, also extra time is needed for chewing. Remaining teeth have decayed somewhat with some breaking also
• Lethargy - feeling tired most days
• Energy – low. Hard to get going
• Weight loss – lost approx 10kg over the 5-month period off work, which remains the same today. Lost strength overall particularly in the legs
• Mental state – apart from the fact that no oncologist will ever tell you the cancer won’t come back, add living with all of the above and trying to stay positive has been somewhat exhausting

Keep in mind this is just me, and your journey sounds like it will be far more upbeat. I must admit I probably am a "glass half empty" type. I thank God for my "glass half full" wife.

Sorry about the extended rant, hope you find this at least interesting.

BR, Shaun 

[angieh]

Hi Shaun,

your reply is extremely interesting and a timely reminder to me that there are many people who are far worse off than me. I thank you very much for sharing such personal details.  I can see why you needed long time off work to manage your health.

I am somewhat paranoid that I am not "sick enough" from the treatment and that maybe that means they didn't do the radiation correctly. I will confess that fear to doctor at next appointment.

I am most certainly a glass half full person, always have been.  My husband is a bit of a pessimist but not to the point of being a drag. My health (aside from cancer) was very good. Physically fit, regular walker and runner, ate very healthy foods, maintained healthy weight, no smoking, social wine drinker but only on weekends and not a big consumption.  On the negative, I definitely worked too many hours under significant stress.  Running was my form of meditation and stress release. I was very self sufficient and self motivated.

My job relies on my brain and communication. It is a high stress position but generally I cope very well with that and find my work to be very satisfying. It's all sedentary, office work and the most physically draining part of going back to work will be the effort required having to get dressed, put on makeup and catch bus to city.

I didn't even know Alopecia was possible side effect.  My hair is much thinner and I have lost it along the base of hairline, but I just need a good short hair cut and will be ok.

• I have muffled hearing but hoping that will fully pass or I guess I will have to learn to live with it.
• I have the constant phlegm in throat and the unsuccessful clearing of it.
• I have a lot of mouth ulceration that seems to be taking a long time to heal (and this is preventing me from being able to try more foods to swallow as only very bland food like oats can be tolerated currently)
• I have bad taste in mouth constantly (all that phlegm doesn't help)
• I eat oats very slowly each morning and yesterday managed to eat some 2 minute noodles at lunch time. I am going to try creamed rice next (home made). All other meals are supplements via the PEG.
• Radiation burns to neck are healing nicely (lot of red skin still but the broken skin has healed)
• Teeth are fine.
• I have nausea to the point of vomiting at night (weirdly always around the 7.30pm mark). The only remedy I can find it to ensure that all peg feeds are completed no later than 4pm each day. That way there is nothing to actually vomit up at 7.30pm. Dry heaves is all I could manage last night.
• Weight appears to be stabilising at 54kg. I started treatment at 57.5kg so this isn't too bad (I am a fairly small person and quite short at 161 cm), but I can't afford to lose any more.
• I am physically tired but not exhausted and I reckon I am getting slightly better each day.
• Mentally ok - but extremely bored with tv and my own company (the COVID restrictions have made this much worse because I have not been anywhere except hospital appointments for 9 weeks now. )