Hi, I have been having chemo and radiation treatment for head/neck cancer. I had my final chemo yesterday and next week is my 7th and final week of radiation. Yay! Then I gather there is a 3 month wait for another scan to see if it worked...
Meantime, as I work an hour's drive in peak hour traffic to work, an 8 hour day at work and then another 1 hour drive home afterwards, and knowing how I am not the way I used to be before treatment, I am looking for realistic guidelines for when I can expect myself to be okay/ready to return to work in the ratrace. Currently I am allowed to work from home - doing admin/marketing type duties.
So I'm working from home now doing what hours I am able to manage... End of next week say 14 May is my last treatment.
Yes I'm in pain and drugged up and my diet is just liquid and I'm very tired and low energy - as one would expect nearing the end of this brutal treatment...
I know everyone is different and it depends on my healing/how I feel and if any other nasty side effects pop up between now and "then"... should I take say six weeks after treatment to recuperate and rebuild my energy to return to the grindstone? Is that fair and reasonable?
What are your thoughts/experiences/wisdom on this for me... I'll be needing to tell my employer even a rough date they can expect to see me again...
Hi Dee, first day in this blog, actually this is my first post replying to you when read your history, glad you are about to finish treatment. Mine will start next week can you imagine..full of concerns and honesty reading histories of other people like you goin through I know by now that what I can expect isn’t pretty at all. Won’t be easy for a 78 years old like me and I’ll have to hold to my good prognosis to help me out into this process and praying hard to have the strength, courage because I,m never been to tough for pain.
My diagnosis is right tonsil cancer HPV p16 positive and ent oncologist and radiation doctors all agree have a very good chance to be cured around 90% no lymph nodes involved and told me I am in border line stage 1-2 and 35 rounds of radiation is all I’ll have no chemo.
Would appreciate if you can comment back what kind of radiation you had.. was it photon or proton ? and what was your course of treatment, did you have surgery and chemo too ?
Wish the best and amazing you went through all this and kept working. Any piece of advice you can give me will be much appreciated Dee
Hi, offhand sitting here replying I don't know the type if radiation I'm being zapped with but I will ask them today at my treatment and let you know.
I had hpv cancer in left tonsil, so had a full tonsillectomy to be on the safe side. Alas is it had spread to my lymph nodes in neck so my treatment for that was the 3 chemo sessions spread out over the 7 week radiation course.
I had my last chemo session last week which was the worst of them all and made me the sickest... and the radiation is now burning my skin. Funnily enough I find just the pain patches I wear help with the pain and I don't need to gargle the "pink lady" as often as some - if ever. However, I am having trouble swallowing... anything... unless its as watery as water. I leave tackling other things until end of the day.
Like I bought one of those healthy type organic packet soups - think it was chicken, corn and chia. It also had carrot in it. But all tiny swallowable pieces and very soft - I chewed them all anyway to be on the safe side and the resultant mush went down. If its not mushed I can't eat it just now... I can't swallow it rather.
I have often been told by my oncology team that I am doing so much better than others on the same regime as myself and they are very impressed with me. I put this down to going to a naturopath / dietitican at the very start once I found out I had cancer even before my treatment started. This person looked at where my body was in terms of minerals and nutrients and health and where I should be and changed my diet and supplements and got me in probably the best health I have ever been in my life so even just 2 weeks later starting treatment, I was starting on a very healthy footing - much stronger than most who don't bother to do that and we believe that has made the difference.
It wasn't cheap but it was well worth it and I'd do it again. Also Reiki. I put off trying Reiki this whole time thinking it was a bit suss... then I gave in and tried it a couple of weeks ago for 2 weeks... jeez, if I know what I know now about the experience of Reiki, at the beginning when I started, I would have been having Reiki every week!
So get your diet/health sorted and look into some professional reiki sessions - even just once a week - here is the diff... after Reiki the pain is not as bad AND I could drink a glass of water! Normally if someone offered me a glass of water I'd balk - would take me forever to sip my way through and wouldn't feel comfortable doing it either but after my first Reiki session they made me drink a glass of water and low and belold I could swallow and drink the whole glass like a normal person! I was blown away!
After my last chemo session last week I had chemo brain and forgot my reiki session and really missed it... definitely booking in for this week!
I also have to give up some supplements and find them in powdered or liquid format or crush the tablets but not all tablets are allowed to be crushed so for those I just can't take them right now... I had a tablet stuck in my throat for what felt like a few hours on the weekend and wondered if I shoudl go to the hospital because I couldn't swallow anything with it sitting there and I was afraid I would choke but then I noticed some of the water/saliva I did manage to hit it with made it sizzle and dissolve - so that's how I ended up moving it... waiting for it to dissolve while stuck at the top of my throat...
I also splashed out and got a cleaning lady who comes in once a fortnight and does the basics for me so my house is clean... fatigue and tiredness are very real enemies.
As for working - I have been allowd to work from home during this... but working about half the hours I normally would. Too tired near the end to try and focus on putting in the equivalent of 8 hours a day! Couldn't do it anyway given time off for appointments/treatments etc. I'm up around the 4 hour/day mark now and if it were not for chemo after effects I can sometimes manage 5 hours/day - but not all in one sitting. I have been known to fall asleep at my laptop! So I put in time during the day when I can and keep a running timesheet for my employer. I might work half an hour at 2 oçlock in the morning and 2 hours at 11 o'clock at night and a few hours in the afternoon type thing...
I do not look forward to returning to work too soon given how I currently feel nor the fact I have an hour drive to get to to work and another hour drive home in peak hour traffic on top... keep praying for a lotto win.
I am 62. Told I look much younger - which goes against me because nobody offers a seat for me or offers to pick up heavy things etc. They think I'm young enough to do it myself. They were like that where I worked too until one day they found out how old I really was and then everyone changed and was nicer to me 🙂 Maybe I should have a t shirt printed ha ha.... Because I had to stand in the chemist the other day while this young family including the 2 young primary school kids sat in the only waiting chairs there and made the rest of us stand - although there was an older person than me also standing, plus me having just had chemo, and I would have loved to have said something... but one doesn't... just mentioning this so you know other age groups going through this...
I also went through this alone. My husband died of cancer 6 years ago. My only surviving child is living interstate completing her masters at Uni and I have not told her about this and won't until she visits me next month on a uni break holiday. I have no family except one estranged brother who I made the mistake of telling and he basically said he didn't want to know about it or me. Working out of town every day means I have few close friends locally but I picked one who I could rely on who I know will help me if I need it but because I am a stubbornly independent type, she's a bit annoyed I haven't called on her more often I think. I did let her take my dog for a walk yesterday though 🙂
I won't sugar coat this for you - I shouldn't imagine at 83 it will be an easy ride for you either but on the bright side at least you don't have to have chemo as well. Chemo is hell. My regime was sitting 5 hours in the chair at each chemo session... looking on the bright side I didn't lose my hair - I chose the cold cap option at the same time... and can quite understand why some women refuse it and would rather go bald... it freezes your scalp... it is very unpleasant to put it mildly. But I have my hair still so it was worth it.
I'll let you know what my radiation program was when I get home later...
Good luck with yours!
Hi Jesus, I had similar to you. I had a tumor on my left salivary gland in my neck. I had that removed in Feb and tomorrow I finish 33 radiotherapy treatments. The 1st 3 weeks were ok and I noticed when in for treatment that the people having chemo looked to be suffering a lot more than me. In saying that at 3 weeks my throat, inside of cheek and back of tongue blistered and ulcers came soon after. The morphine works quite well but makes you very drowsy. These last 2 weeks and now I have really had to keep on top of the pain meds to cope. I was lucky and didn't become as fatigued as I was warned. I really played the seriousness of it in the 1st 3 weeks and wasn't great at accepting help from friends and family. My advice is to be kind to yourself. Don't put pressure on yourself to get everything done that you usually do and let your friends do things for you. Talk to the nurses and doctor when you feel pain. Rinsing your mouth regularly is invaluable. It feels better too. I thought it would drag out but really, it has gone pretty fast. Be strong but be kind to yourself. I am happy to be a support for you. As much as family and friends try to understand it's not like anything I have been through before so to talk to someone who has been there is invaluable. Be brave. Good luck. Tarsh
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