Hi everyone

My husband has been diagnosed with cancer of the soft palate - one minute he had sore throat (2nd May,) and today he is having PEG tube fitted prior to start of radiotherapy and chemo next wednesday.

My question is, how do I cope, how can I help him, what do I say and what are the future months to bring?

I am so frightened - can anyone help us?

Zoe,

You can start by calming down and educating yourself and your husband as much as possible. Knowledge will be one of your most valuable weapons in the months to come and coming to this site is the best thing you could have done and you will quickly learn why.

Help us by telling us more about his type of cancer; what chemo he will receive and it's frequency; and what type and frequency of rad. The more information you share with us the better and once we have a better picture we can respond appropriately.

Welcome Zoe

We are sorry to hear your husband

Hi Zoe,

My husband was diagnosed mid May and radiation and chemo started yesterday. This forum (the information and the people) has been a blessing for me.

What I found is that my husband was so in shock over the diagnosis, he was of no use during the many, many pre-treatment oncology consultations. He was present, but wasn't really in the moment.

And, we had some anger issues to deal with in that he was mad at the cancer and the situation...and, sometimes at me. Fortunately, that part has gotten better, but from the docs and this forum, I understand that the medications, pain and frustration may impact his mood and I feel braced for that.

I made it through the first hurdle, which was getting him into treatment. I feel ready to help him through the rest of the hurdles because I am a faithful reader of this site. Although, like you, I was scared and unsure of my abilities in the beginning.

The information on here is overwhelming and sometimes scary, but it is informative. Try not to get lost in the scary stuff.

This is one hell of a cancer, focus on learning what you need to help your husband through this. Vent or share your fears here, because this is the place to do it.

When you are meeting with doctors' take notes...lots of them. Ask questions when you are confused. And, come here whenever things don't make sense.

There are some pretty smart people here and so much willingness among people to help each other out.

Through people here, I got a much better understanding of what to expect during the 7 weeks of treatment and beyond. Our doctors, to some extent, have sugar coated much of the information and I just wanted to know the best and worst of the treatment process so that I am well equipped to help my husband through this.

My husband had no symptoms other than a swollen lymph node. So, like your situation, the "C" word came as a shocker.

There was a point in time, I wondered if I could manage him, my kids and my business. But, I have broken it down into smaller segments...day by day.

Please keep us updated on how you and your husband are doing.

We'll keep you in our prayers,

Margaret

Hi Zoe

What Margaret said "When you are meeting with doctors' take notes...lots of them. Ask questions when you are confused."

We took a small tape recorder in with us so we could record what we were being told by both the doctors and the nurses. They tend to throw a lot of stuff at you and it was VERY helpful to be able to go back and review.

Don't be afraid of the PEG, it turned out to be one of the best things I did.

Kevin

One more article that you may want to see about the feeding tube

http://www.headneckmd.com/pages/Gastrostomy.html

Zoe
Here in the Uk one of the best places for help and information is Cancerbackup. The web site is good but the free help line is a godsend.
0808 800 1234. 9am to 8pm
Hope this helps.
But the main thing is one step at a time, and if you don't understand anything, please ask again till it all makes sense.
Please remember this forum is always here for you
Sunshine love and hugs..
Helen

Hi zoe

glad you found your way here and believe me this site is the best site there is on either side of the atlantic,so settle in and drain the many brains of all the information you need to help you on your journey which will be long and rocky

liz

Thanks everyone - picked hubby up at about six this evening - he is in agony, spasms he thinks is this normal???

Oh and by the way - don't know what stage but he will start 6 weeks radiotherapy with 1 day a week chemo and radiotherapy (not sure what type either) and will get weekends off (wow wee!)

and its on the back on the soft palate his uvula has gone but they think its early.

Zoe,

Find out what type of chemo and what tpye of radiation form his docs.

oh ok will they let me see them?

Zoe,
sure they will let you know, just ask. Do not ever be afraid to ask!! You do not want to assume things. The worst thing for most people is not knowing what is going on and why you will suffer from certain procedures. It helps a lot to know what is happening and that the reactions you will have to the treatments are normal and expected etc. Taking an active role helps you in battling this monster.

Markus

HI, Zoe, The thing that helped me the most during my husband's treatment was to understand what the tx. was going to be :ie-rad and chemo [what kind of chemo drugs is important] and read everything I could find on this site about those things. Even tho some of the information was frightening, it kept me from being caught totally unaware of what side effects to prepare for. This site helped to get me organized for my role as his caregiver and gave me lots of help in dealing with John's Doctors, nurses,etc. ONe caution- don't get too far ahead of yourself. Start with the potential effects of radiation and his kind of chemo and learn all you can. Get your time organized so that you can be with him whenever he needs you and get a support system in place to help you both cope with the ongoing "homefront" responsibilities. Start a really good record keeping notebook for all meds, Doc. appts, a chart for everything [calorie wise]he eats and drinks. Keep up with his weight on a weekly basis. The more you keep a good record of, the better you can communicate with his medical team. You will have alot to do, so stay strong and try to take care of yourself too. Amy in the Ozarks

Hello Zoe,
My husband and I were also hit with the "C" word in late February. Kyle had a lump on his tongue and ended up having surgery, lymph nodes removed and then chemo/radiation. I'm happy to say he's done with chemo and tomorrow is his last radiation treatment. It's been a crazy 4 months. You will get through it. The time has gone fast for me but I'm assuming not so fast for my husband. I flat out asked my husband what I could do to help him and his big request was to keep the kids away so he could have more quiet time. He's been very tired these past few weeks. So, I take my baby and toddler out for a few hours each day to give him more quiet time. He did not have a Peg Tube and has lost a lot of weight. EAting is very difficult for him. He's hardly eating or drinking much now. He was pretty much himself the first few weeks. Then his tongue got very sore, he's had two infections (yeast infections) in his mouth, his skin is red/raw in a few places, his hair on his face/lower part of the back of his head is gone and he is very, very tired. He's been sleeping most of his time away. No one mentions it but you do miss your spouse during all this. In my case he's just become a shadow that walks from the bedroom to the kitchen to try and eat/drink. I miss our talks, laughing, etc.. I know things will get better soon! Ask the Dr's anything you want and even ask for copies of reports and lab results. These belong to you and your husband and you have every right to keep them for your records. They are providing you a service that you are paying for. Did you ask what the Dr's hope to get out of his rad/chemo. Is it to shrink the tumor before they remove it? My husband was young so they went aggressive by removing and doing chemo/radiation. They wanted to really try and kill any lingering cancer cells. I pray they did and this is the last of the suffering Kyle has to go through. Good luck to you! Tamara

Zoe
i think both you and i know that in England we do not have as much access to our records and treatment plan as our cousins in the states.the reason seems to be that we DONT pay for our treatment directly unless we choose to be treated privately.Rad and Chemo plans and doses are decided by the treatment team, and we are just told what is going to happen.That doesnt mean you cant ask ,just that you wont have the information volunteered.
With the new freedom of information act you do of course have the right to see your medical records but i dont think too many people have availed them selves of this new law yet.

I was very lucky to have a complete copy of all Robs records sent to us by the General Dental Council who are taking his dentist before a disciplinary board in September.I found it very reassuring to read all the lab and scan results and confirm that his medical team had been 100% honest with us and not kept any information back re his diagnosis and prognosis.Unfortunately this is not always the case in the UK and your records could just as easily contain things you hadnt understood or just didnt know so i guess it all depends on what information you want and what you might prefer not to know.

Zoe,
My doc gave me leaflets about my chemo drugs, as well as explanations of side-effects and was completely upfront about my chances. I then was handed straight to a MacMillan nurse, who went through it all again and gave me a 'diary' where everything will be logged every week--scales for me to rate side effects, weight, cell counts etc will all be logged. As Helen suggested, Cancerbackup has loads of info and telephone support. I've been told I can ask, ask and keep on asking and even have 'out of hours' numbers to ring if I need them.
As Liz says, I think we feel more 'helpless' here as we don't pay directly for our services, so think we have no right to 'demand' answers--but the best docs seem to know what we want anyway--I feel lucky with the way things have been handled here--apart from the months long wait for initial consultation and \MRI scan!
Keep coming back and asking, as well as getting in touch with the Support Services which are available here in the UK,
Brenda