Hi,
I have been diagnosed with throat cancer with a tumour at the back of the tongue and a swollen lymph nodes on one side.The treatment is combined radio theraphy (daily) + chemo weely for up to 2 months. As the Brighton hospital does not offer the IMRT I have asked to be referred to Royal Marsden in Sutton, The treatment starts mid Dec (so no Turkey at Christmas!! )
I would really appreciate if another memeber who has received the same treatment could give me some insite to side effects, ability to drive (daily to Sutton from Brighton), saliva, sleeping,eating any solids etc etc. I am very apprehensive about this treatment and the effect it will have on my 8 year old daughter. Although I have asked all the questions I could think of and received the answers there is no substitute for feedback from fellow patients!!

I will be really grateful for any feedback
Many thanks
Loni

Hello!

Welcome to the club no one wants to join.....

I can answer a few of your questions but not all. I only had rads for my tonsil cancer so I don't know how the combo of chemo and rads will affect you. I had IMRT and was able to drive myself to and from the appointments every day. I have no idea how far Brighton is from Sutton - 1 to 1-1/2 hours each way? My drive was only about 10 - 15 minutes or so. The longest part of the whole process (drive and appointment) was waiting for my car at the hospital's valet parking!

You may be able to enjoy Christmas dinner after all. I didn't have any difficulty until the third week when my taste buds were affected, my mouth was dry and I developed mouth sores and later, thrush. I spent the majority of my time sleeping (up to 15 hours a day at the end of treatment) but managed to get out every day, usually having lunch after my appointment, shopping or sitting in the sun drinking iced tea and reading. I was able to eat every day but needed a lot of liquids to wash it all down.

I did have chemo when I had breast cancer. It surprises me that so few on this message board mention chemo difficulties; it's tough stuff. I didn't have nausea (great pills for everything) but I felt 'sick' with chemo, not so with rads. Rads and chemo were not concurrent so it extended the treatment time by a few months. With chemo I took an anti-nausea pill and a 'happy' pill before treatment so I did need a driver on those days. Chemo was every three weeks for six treatments so I didn't have to depend upon others too often.

It has been 1-1/2 years since my last rads and I'm fine now. Took a while to get my taste buds and saliva back to normal. It's odd - this was a relatively short time ago yet I can't exactly remember how it was. I remember thinking that this would never end, that progress was far too slow, and the next thing I knew I wasn't thinking about cancer 24/7 and could go days without thinking about it at all. I had an ENT appointment last week and was pronounced cancer free again. With an outcome like that, It's all worth the discomfort.

There are all sorts of questions and answers on this message board. The Medications, Treatments, Procedures forum is a wealth of practical info while you're going through treatment (skin products, oral hygiene products, shaving tips, etc.).

Best of luck to you!

Mimi

Hi Loni

I've read a lot of good posts about Royal Marsden from other members on the site.

My treatment was exclusively surgery, so I'm not able to give you any insight on what to expect concerning side effects, et c., but lots of the folks here have been on the same road you're starting down.

As for your daughter, be as frank and honest with her as she can handle. My niece was 4 when my adventure started, and my sister (her mom) must have explained the situation to her well because when Kara saw me after my surgery--tubes, holes and all--she was cautious but curious. You might even want to have her talk to a nurse and ask any questions you can't handle.

The best news I can give you, Loni, is that you're not alone in this.

Julia

Hello Loni
Sorry to hear of your situation, but welcome.
My husband had both chemo and r/t over a period of 7 weeks and although he would have been OK to drive for the first couple of weeks there is no way he could've maintained that. We had about an hour's drive to the hospital.
Although Trevor didn't have IMRT (so I can't comment on thoses effects, which I think are more user friendly!), he was so zonked out by the treatment, like Mimi he just slept the days away.
Reading through the various posts on the forum will give you a good understanding of what to expect and how to deal with issues as they arise and if you stay tuned with any questions or problems and your progress, you will get unmatched support from the members on this board that will help to lighten your load and make your journey a little easier to travel.
Julia's advise re your daughter makes a whole lot of sense.
Take care, be kind to yourself and accept any offers of help that are going. Do you have support? You'll need it.
Thinking of you from the bottom of the world
Deborah

Thanks ever so much for your helpful feedback. I shall be back soon and let you know how I'm getting on & if you don't mind ask few more questions!! It's 2.30 am here and I have to take my little girl swimming at 9am. At least I shall be able to have few hours sleep thaks to you. I feel better knowing what to expect rather then trying to pretend everything is going to be OK or at the end of the scale I'm not going to be able to put up with it and jump off a cliff!!

Thanks again and will be in touch soon

LONI

Hi Loni, I think I'm in a minority but I rode my motorbike to my RT every day for 42 treatments and ate and put weight on for the first month. I was managing 4000+ calories a day of normal food and hardly saw my dietician.
It's not always good but it's not always bad either. Hang in there. Hagg.

Dear Loni,

One more thing! I've recently recognized that I tend to be blasé about some stuff, like this cancer thingey (see what I mean?), as if it hasn't affected me and that life simply goes on. Life does, but not with the ease that I often portray. I dealt with tonsil cancer a little more easily than I did with the earlier breast cancer diagnosis; because I'd been through cancer before and lived to tell the tale - what could be worse? Well, oral cancer can be. You have to muster up all that courage that your fifty-seven years of life have instilled in you and prepare for a battle. If, like me, you emerge from a lesser battle, perhaps you're a lucky one, just gearing up for the next one. Who knows? This is tough but you can do it. That's what you need to know.

Writing this (it's only 1000PM here; 600AM in Brighton) I remembered a vid clip that was inspirational to me early on. It's geared toward women with breast cancer but the message is for all cancer patients and their carers. A bit corny? Yes! Although I've seen it a bazillion times, the part where the woman is having a scan always brings tears to my eyes - the fear factor. Makes no sense however; scans are totally painless and I'm not claustrophobic. Go figure.

The Survivor Movie

Loni! Don't forget the carers! Having been both carer and patient, they're equally painful. Your delightful little eight-year-old will be a carer, whether you and she realize it or not. Be kind. Read the recent posts by cookey, Deborah51 and Bell.

Buena Suerte, mi amigo. You have no idea of the friends you've made.

Mimi

Good grief! What's on TV tonight? "The Secret World of Cat Ladies!" I'm presently down to none. Sigh.

Hey Loni
Brighton (where i lived until age 7) and
Sutton(where i lived until the age of 17)is one hell of a drive, even when you are well.The traffic during the day is horrendous,what about the train?I think macmillan cancer services may have advice about help with travelling costs.I can't see you being able to do that journey myself, particularly if you have chemo and get nauseous after treatment.You may also need to check the small print of your motor insurance policy because there might be a problem with cover if you are receiving certain drug treatment.
You should be able to get your questions answered at the Marsden Loni as you will see advice leaflets and services at the hospital covering most subjects.Another word of advice is to get a pre paid prescription certificate as pharmacy costs can be huge.Also check any life insurance policy you may have as some carry a critical illness policy that will pay you a sum of money to help with costs and loss of earnings incurred through cancer.

Everyone reacts differently to treatment and what happens to one person wont necessarily happen to another ,so its a question of see how you go,and alter your plans accordingly.

good luck

Hello Loni

You are in good hands at the Royal Marsden.

quote:

Cancer patients are able to apply for their exemption certificates for their free prescriptions from 1st April 2009. All cancer patients undergoing treatment for cancer, the effects of cancer or the effects of cancer treatment are now encouraged to apply for exemption certificates from their GP surgery or oncology clinics.

Exemption certificates last for 5 years (but can be reapplied for) and cover all prescriptions not just those relating to cancer - they must be countersigned by their GP, hospital doctor or service doctor.

For more information please visit the Department of Health website, www.dh.gov.uk/helpwithhealthcosts or call 0845 610 1112.

More information on financial assistance at Financial Help for Cancer Patients (U.K.)

Best wishes

Vinod

Hi Loni
I can only offer support and stress the importance of positive thinking. Buy a diary for 2010 and INK in a dinner date on 31st December, I am having dinner with Johnny Depp! I hope he turns up!