Thanks Maureen for responding, I am glad at least someone is out there,
Happy New Year.
I had my port in but it's not for the pain meds, it's for the chemo drugs. I haven't a lot of veins left they can use.

The pain from the port balanced out the pain from the neck dissection but the port pain went away.

There are three days left before I start chemo and I've taken up a lot of bad habits eating wise but those will fanish when I give it all up, sadly.

I am not in counseling of any kind, nor do I have a nurse. Is is really that horrible? Should I ask for this?

QueenKong, I'm in New Zealand but I don't think we do things all that differently here. When I was diagnosed with my third oral cancer, I just knew I needed psychological help. The specialist nurse at the hospital anticipated this and referred me to the Cancer Society which has visiting nurses to call on people in their homes. She came after surgery and before and during radiation and then a couple of times afterwards. She in turn referred me to a cancer psychologist in the city, also employed by the Cancer Society. I didn't need the nurse for long and all she did was talk to me but it helped me a lot to have someone to converse with who had seen a lot of people go through a similar process.

I can't explain exactly how the counselling by the psychologist helped but it was immensely helpful. We talked about relaxation and mindfulness exercises (most of which I've stopped doing). I suppose our responses to fear and pain are connected to other issues we have in our lives so talking to a trained person helps to tease out all the fears.

Hmmm, I didn't have chemo (have had it in the past) and I didn't find the radiation all that bad. I took every drug going to deal with the nausea, constipation and pain. Losing the sense of taste is horrible but funnily enough food becomes so uninteresting that you wonder why you ever wanted it so badly before. You don't really miss it. I was scared of losing too much weight and having to be hospitalized so kept up my intake using sheer will power. Now I love to eat again!!!

Staff at the oncology unit will take good care of you through the process. My RO said it was harsh treatment but they got people through it. They are with you every step of the way:)

I had a port as well. When you go for chemo or anything that the nurse will use your port, you can ask for numbing spray. Here if you dont ask they wont offer it. Its mainly used for children to numb the skin around the port area.

As far as your intake goes, every day you need to have a minimum of 2500 calories and 48-64 oz of water. I know it sounds like alot but it is the MINIMUM! If you can take more in, say 3000 or even 3500 calories it will only help you get thru this easier. Water is especially important when having chemo to flush the poison out of your system. Try to go heavy on the water the day prior, day of and the day after chemo. Most patients will receive extra fluids thru an IV on chemo days. If you begin to struggle with taking in enough water, ask the doc for a prescription for extra hydration (usually done in the chemo lab).

Best wishes!

Queen,

Looks like we both have about one more day until further treatments. I hope yours go smoothly and would love to hear of any specifics you use to get through them. I know for me not being much of a water drinker, I am going to have to suck that up and drink as much as I can. Everyone on here is so generous and helpful. ChristineB's posts have been full of vast information. Feel free to message me on here in any form and I look forward to hearing about your treatment and full recovery.

QueenKong I saw a series of counsellors, social workers, psychologists and a psychiatrist. All for different reasons, and with mixed success. The best ones are the ones who know what you're going through. The generic psychologist or GP only has a cursory knowledge of what its actually like. As Alpaca said much of what they can do for you is being relaxed and less anxious, because when all the crazy things are happening to your body it can be unsettling, scary at times, especially when you are in a painkiller induced fog.

As for needing a nurse, no, a caregiver yes. You will have very little energy for housework, preparing meals etc. I saw the nurses every day during treatment, and the best thing was to go to them with each new symptom as things changed, and they usually had an idea which made it easier.

As for bad habits with food, the only bad habit is not eating enough. Eat it all now, sugar, fat, salt, whatever you like. Because soon enough you won't want any of it. But listen to Christine on this, she learned the lesson before most of us. Most of us can afford to lose a few pounds and when the appetite goes and the weight drops off it is natural to think "I'll just drop to my ideal weight and start eating again". Its not that easy, and your body needs that nutrition to repair, especially later in the treatment and early into the recovery, when its hardest to eat.

Don't forget the water too. Get those kidneys working and get that poison out of you.

Chemo and rads are a tough road but its very doable. When you find yourself sitting on the floor of the shower at 2am crying, take some solace that you're not the first and that happier days are ahead. Post here whenever you like, there is usually someone online somewhere in the world who has been through exactly the same thing and is happy to help you.

Thanks for all the advice and support, I read every word of it. I am wondering if they are going to go ahead with the chemo and radiation with this bad cold have now.

I called again for an appointment with someone at the counseling center and they finally gave me an appointment for near the end of January. That seems so far away & I was hoping to get started sooner.

Hi, QueenKong
Try calling the counseling center on a regular basis to see if there has been a cancelation and if you can get in earlier. The NCCN Distress Management Guildlines are posted on this site at http://oralcancerfoundation.org/treatment/guidelines.php - you will need to scroll down a bit to see this. You're supposed to be getting this kind of help with your treatment. Maybe you could pick up a couple of key words from the guidelines and use them when asking for an earlier appointment.
Also - if you are in the northern hemisphere, it is a time of low light and cold. Whenever you can get natural light, do so - a short walk, sitting by the window, etc. I am convinced that walking our old dog (sadly passed) daily helped my husband get through treatment fairly good shape emotionally and physically. His treatment was in the winter also, and started 4 years ago. He is doing very well.
Best wishes,
Maria

QueenKong, I'm glad you have an appointment for counselling, even if it is down the track a bit.

And Maria, thank you for pointing out the Distress Guidelines. I wish I had found that earlier. Although it is US based, I'm sure it applies to other countries too. It's something I can discuss with my support group in Auckland.

Good luck Queen Kong.

Regards
Maureen

QueenKong - Only two things I might add to the excellent advice you've already been given:
1) Getting appointments moved closer. It really does help to keep asking (nicely of course) and if that doesn't work maybe you could have someone call for you and cry a little on the phone about how anxious you are and that you need an earlier appointment. They can move appointments around. After my son got an important appointment moved closer, and later when he was recovering and not in urgent need of a close appointment, the hospital would always call me to see if someone else could have his appointment and I always said yes and they gave us a later appointment.
2) Something Marie mentioned struck a note with me. Low light during winter months can lead to Seasonal Affective Disorder (SAD). If one doesn't get enough Sun, it can lead to low energy, and being tired. Recently, a blood test that I had showed a low level of Vitamin D, which improved greatly - after being given large does of extra Vitamin D plus getting out in the sun every day. Just something to think about or ask the doctor.

Today was a rough start. I spoke to the radiation appointment maker after waiting all those hours, I was there from 8am for chemo and didn't leave til after 6pm. He gave me better appointments so it's going to be easier. I want to be able to get my kid off to school and then go to treatments and be back before she gets off of school. That's not going to happen on chemo days though.

Anne-Marie - I take vit D but sometimes forget it. It's really smart to try and get more sunlight. I need to get out and walk more for sure, even in the cold weather. Tomorrow, I am going to start walking more.

Maria & Alpaca - I've started reading those guidelines. That's a great resource. I like the chart they have there, it's makes it easier to understand than a wall of text.

I posted more details in the other thread. I don't think I will sleep at all tonight.