Broke Down

stevenl said:

2 a days
Hey Scam,

I think that most here in America get 1 treatment per day. I don't remember, but tell me again, where do you live? So also tell me if you would, what was 2 treatments like per day? I mean we don't know what the difference in strength of treatment may be but I am just curious. If I thought for one minute that I could handle 2 per day, I would do it, just to get this over with. I am only getting 33
treatments and have completed 16. And it's strange that after missing most of this weeks treatment I know what everybody means by, you continue to cook. Mild as it may be I can feel my condition worsen.
No it is not bad yet but I can feel the change.

Best to ya Scambuster,
Steve

Scambuster said:

Post Rads Recovery Expectations.
Hi Hal and gang nearing the end of Rads.

Glad to hear you are almost there Hal. Just be aware that you may continue to feel like S____ for a while once your Rads stop. I was so relieved when I finished only to go home from hospital 3 days later to find I actually got worse. I was readmitted 10 days later in bad shape.

The fact that I had great expectations must have contributed somewhat to the severe deflation and depression I suffered. Hopefully you will start to improve quickly but many of us went through a 'J' Curve post treatment. Keep a check on your mental state and if you feel like you're heading into a tail spin, let your doctors know. I wasn't sleeping, couldn't eat, puking, pain, nausea, hot flashes, cold flashes, and had a terrible feeling I was losing the fight. When I was readmitted, I was treat for depression and they put me on some meds which turned me around within a couple of days and I haven't looked back since. Point is if this does happen, it's easily treatable. i also believe the solid 9+ hours of sleep the meds did for me helped a lot in my recovery as sleep is essential for healing.

Measure your recovery by the week not the day and try to get into a routine or normalcy i.e. go out for a walk, sit in a cafe, read a book a few hours a day and start rebuilding the battered body. I am just over 5 months out now and feeling great though I did struggle for quite a while in the early months. I hope you don't need this advice but I reckon if someone had told me the above I would have had more peace of mind.

All the best
Scambuster

Scambuster said:

Twice a Day routine.
Hi Guys,

As said I got it twice a day with a minimum 6 hour gap. I had the IMRT machine. Sessions lasted about 20 minutes and I recall i used to count about 18-or 20 locations from the whirring and grunting of the Machine, but I rarely kept count as I would zone out.

Comparing my condition with say Steve's, i was in bad shape going into week 3. I did have some complications as I got a PEG at that time and a free dose of Hospital Pneumonia. I was hospitalized around the end of week 3 and stayed in till the end so about 4+ weeks.

At times they had to wheelchair me to and from my room down to the rads clinic. I was not a well boy. Family flew up from Australia and friends came by thinking I was checking out ... permanently. That may be the effects of twice a day sessions although a few others on my schedule managed to go home after each session and didn't need the PEG. They were also pretty sick but not as bad as me. I was holed up in a hotel during the week and only went home for the weekend for the first 3 weeks till I had a bad melt down with pain and vomiting. When you puke and aren't sure you lost your pain killers, it's dangerous to retake them in case you OD. On that occasion I did lose them and the pain almost sent me into shock. I was admitted and shot up with the magical Pethadene.

On the Chemo - I was getting Erbitux but it was only once a week and took about 90 minutes. Apart from a bad face peel, I don't recall bad effects from Erbitux though it is hard to know what is causing what between Rads and Chemo.

Steve to answer you question, I live in China but had treatment in HK. It only takes about 1.5 maybe 2 hours to get from my home in China to the Hospital but that time included going through 2 lots of immigration either way and then ferries or trains and buses and/ or taxis so it wasn't a relaxing commute by any stretch.

Cheers
Scambuster

POSTSCRIPT on RECOVERY (Take it or leave it)

As said above, I was in pretty bad shape during and after treatment, lost 44+ lbs was totally reliant on the PEG. I was open to just about anything if it could help me. I did consult with Naturopaths before, during and after treatments. I believe the nutritional supplements, vitamins and diet have helped enormously in my recovery. I was also given Homeopathics to help the healing and stop the continued burning, and also helped my during the first part with emotions after diagnosis.

I even had friends call up from France, New Zealand and Australia who put me in contact with 'Burn Witches'. These are people who have a gift where they can assist burn victims when contacted very soon after an event. They are not 'charlatans' or freaks, just nice normal people who have a bizzare gift. No idea how it works or how much it helped but as I said, i was desperate and open to anything. I have seen results year ago and they do have this ability.

I also believe the meds i was given after I finished treatment, to treat what turned out to be depression (& anxiety) have helped as I started to get a solid 8-10 hours sleep a night. During the ordeal, i hardly slept in 2 and 1/2 months as I had 1. the shock of diagosis, 2) surgery a week later where I got filled up for 10 days with Morphine and all the other Pain meds, 3) got released and same day my wife gave us a new baby boy, and 4) I also had my 'load dose' of Erbitux that week and then 5) started Rads a week later. It was a real Party ... NOT.

Anyway the message here is that all of you in recovery need the right nutrition to give your body what it needs to heal and rebuild itself, and you also need good sleep. I hear many of you hitting the coffee and other items (junk food) that are not conducive to healing, and wonder if that is slowing recovery ?? I don't know, but I have subscribed as best I can to whole and raw foods, as outlined in "The Cancer Diet'. I do stray as I am no saint but over all I have a very healthy diet. The supplements I take were prescribed to assist healing, immune building, anti-oxidants, essential vitamins and minerals and dietary assistance ie Co-Enzymes.

I am happy to say I feel great now with the only real bummer being the lack of Saliva. Anyway I hope this little blast may be food for thought for my fellow survivors. Keep up the fight.

Fire34 said:

2 a day
Stev
I am from the Chicago area. I had two a day for a total of 49 treatments. Missed one due to Thanskgiving. The two a days for me didnt start to get bad until about theend of the 2nd beginnig of the 3rd week. That was when the mucous & throat started closing off making it hard to swallow. I was inpatient during those weeks of radiation though, not having to travel.
Good Luck Steve Best Wishes
Dave

Scambuster said:

Telepathic Kent !
HI Kent and thanks for your kind response.

Every time I have seen your posts I have wanted to asked how your gums were fairing as I remember months back hearing of your struggle. I fortunately have had no issues there at all. I keep a rigorous teeth cleaning regime and use GC Gel at night (Calcium Replacement), use Biotine Toothpaste and mouth rinse, so hopefully my teeth will see me through.

How are things going now with the gums ?? Any improvement ?

I have mentioned many time here about L Glutamine and it's strong healing properties. Not sure if you've given that a try. It was initially given to me to help the Mucosa heal and I also discovered it neutralized the burning post treatment.

Kent, I was amazed to hear you had suffered as a burn victim and at a young age (not that any age is good for suffering). You obviously got through that and have shown that you are a fighter. It is difficult to try and rationalize why some of us get more curve balls than others. Sometime there just is no clear answer. Some of our friends here have and are suffering much worse than I did and I certainly thank my lucky stars that I came through this last ordeal. To all those in the midst, just try and believe that you will get through and be able to look back on this as a bad memory.

Stay well and keep getting better Kent. Now I want to hear soon that your PEG is coming out !!

Cheers
Scambuster