Hi Kevin,
I work shift work (in Emergency Communications) so I think that may be the reason that the RO doesn't want me working. Also I will be having weekly Cisplatin and on those days I have to be at the hospital from 8.30 am and then have radiation at 4.30pm. I'm not sure how long the chemo takes but I'm assuming at least 6 hours. Also the MO said that the nausea etc may last for several days afterwards. I was suprised that I was given such a strong NO to working when we asked the question, because my employer was happy for me to adjust my hours during treatment. At the end of the day, though, I want to do everything I can to rid myself of this nightmare so I will do as I am advised. My employer is very supportive and I will not lose any pay as a result of this. I am very, very lucky in that regard.

Hi William,
I'm not sure what will happen as far as a feeding tube goes - the RO made a fleeting mention that it may be required but other than that I will have to wait and see how I respond to treatment. I've always had a healthy appetite and even with my previous surgeries had no problem eating and lost no weight. I know that this will be a very different experience but I'll take it as it comes - and do whatever I need to to get the best outcome!

Eileen,
I will definately follow up on the massage question next week. If there is a way to reduce the swelling I would love to do it!

Regards to All - Sue

I had my Chemo Port and Peg Tube in place before I started my treatments. The Peg tube was a life saver. It was a little hard to get use to but I only lost 22 pounds, I couldn't afford to lose much more. It was about 3 1/2 weeks into my radiation that I could barely swallow water let allow eat anything. Don't wait to long if you decide to get the Peg Tube because you will feel bad enough ( everyone is different ) with then having to deal with surgery for the Peg Tube. I remember being on here before and during my treatments looking for help, support and answers and now I can't believe I am here now during my remission trying to help and support others what a journey. Stay strong and get your rest. I will be thinking and praying for for you come June 17th. Take care !

Hi Tammy,

I'm really glad to hear that you are doing so well! I had my second radiation treatment today....only 28 to go. So far, so good. I spoke with a nurse yesterday and she said that because only the left side of my mouth and neck are being treated I may be able to get by without a PEG at all. She did say that a gastric tube was more likely than the PEG but I may get by without either. I'll just have to wait and see.

I have my first chemo tomorrow and a a bit nervous about that. Hopefully, because it is weekly I will not have the side-effects with neuropathy and hearing loss that many seem to have had. As you said everyone responds differently but I'll keep my fingers firmly crossed.

Wishing you continued good health!

Sue

Hi Sue,
Glad your first 2 radiation treatments went well.
How did you go yesterday with the chemo?
Wishing you all the very best over these next few difficult treatment weeks. If Melbourne was not so far from Sydney I would have liked to have visited.
Luv
Gabriele

Hi Gabe et al,

I had my first chemo today and I have to say I feel great. There was alot more to it than I expected lots of electolytes in the first bags of hydrating fluids and then steroids, anti-nausea meds, a diuretic and then the Cisplatin followed by more hydration. 6 hours on the drip in all, followed by Radiation. A long day but as I said I feel really well. A friend of mine, who is a nurse, seems to think that's due to the effect of the steroids. Anyway I'm making the most of my good mood and energy! So far no fatigue, nausea, sore mouth, throat and only some minor swelling. I have been given anti-nausea meds to take for the next two days, so hopefully that will keep any problems at bay. Only 5 more Chemos and 27 rads to go!
I hope you're well. Best Wishes.
Sue

Hi Sue,

I'm so happy to hear that you are handling everything so well. You're a real trooper and an inspiration.

Good luck and keep the good news coming.

Jerry

Just A Quick Update!

I have just finished my 2nd Cisplatin and 8th radiation treatment. Still holding my own and am still able to eat and drink normally. I have a few sore spots starting to appear in my mouth and throat but no problems with mucous or saliva, as yet. My skin seems to flare up after some treatments but so far it's not giving me as much grief as the neck dissection did. My range of movement is still really good and I'm sleeping okay and I'm not suffering any major fatigue. Four chemo's and 22 rad's to go! Can't wait till it's over!!

The worst part for me is the travel to and from the Hospital 5 days a week - about an hour each way. Anyway if that's my worst problem I think I'm doing okay.

I hope that everyone else who is going through treatments at the moment is also doing well.

Best Wishes

Sue,

Good luck in all your treatments! I'm glad your employer is so helpful during this time. Mine has been too thankfully. In Feb. my doctor gave me a note for work saying I would return in July. I laughed thinking I would be back by April or May at the latest.Well, now my goal is to return on July 19th - guess the doctor knew what he was talking about! I had lots of energy when treatments first started, by the end of them I went from the bed to the couch and back to bed(plus trips to bathroom to get sick).I now have more energy, starting to eat solid foods,gaining a LITTLE weight - better than losing,and in general feel pretty good most days. Peg tube comes out today - I'm nervous about that but can't wait until it's gone! Hang in there, it might get bad for awhile but it will get better. I know how you feel about the traveling - the hospital where I had surgeries and speech therapy is 3 1/2 hours away. Luckily I diidn't go that far for treatments though. You'll be in my thoughts and prayers.

Sue:
I worked through my 5th week of treatment and then one day just hit the WALL!! There were pros and cons to working and staying so active but your doctors know what's best for you so listen. You are doing AWESOME!! Keep the positive attitude and you will be amazed how quickly it will go by and you will be moving forward with your life! You also, Karen. Congrats on dropping that Tube, however I'm sure it became a love/hate relationship (Sort became attached to it, Huh--LOL). Anyway, great job to both!!
Sincerely,
Steve

Sue,

Lets hope you continue to do well in your treatment but if you need us, we're here.