Hi! Another newbie.

Hi Claire, welcome to the group. I had exactly the same diagnosis back in 2017, with the same treatment plan. The treatment is no walk in the park, but it is doable and many on here have done it, the treatment does give very high cure rates, this forum is full of living proof of that. It's good that you are having a RIG or a PEG, they are a lifesaver if eating becomes difficult, also it takes the worry of not eating away. You seem to be well prepared for this, which is a good thing, once your treatment starts try to take it all one day at a time. I can recommend Aloe vera gel for your neck after (not before) each RT session, it's very cooling and helps your skin cope better. We're all here to help you with any worries or questions just ask. Keep us updated as you go along.

Ray.

Thank you for your kind message!  I will deffo add aloe vera gel to my list :)

All the best,

Claire 

Hi Clare and a very warm welcome from me.  Eventually I had the same as you after a rather "interesting" journey to get to Chemo RT except mine was mainly on the RHS.

You seem well prepared and I suspect you will be fascinated by the LINAC and how it works whilst treating you if you like Sci-Fi!

If you have a PEG make sure you get taught how to manage it and feed with it really early on and ask for a pump and feed now rather than waiting until a crisis hits you at a weekend.  I had absolutely no issues with my PEG although others have had some pain and difficulty.  you should get the syringes etc issues with the PEG as it is part of the cleaning and feeding regime.

You will find that your taste and ability to swallow changes often unpredictably during and after treatment do be prepared to experiment.  Often and little is a good maxim.  Don't be afraid to use the PEG when you need to - hydration, meds and feed.  Calories are vital to recovery.  Most are recommended around 3000 per day.  Often much of those 3000 comes from special drinks like Fortisips, but your dietitian will encourage you to eat whatever works for you.  For months after treatment chocolate eclairs was my go-to food!  I still ignore faddy nutritional advice and eat what works for me with my doctors blessing.

Ray has suggested Aloe Vera and I will also add E45.  I used both and my neck did not blister.  Your radiotherapists will be your day to day POC and let them know exactly what is going on so they can help you - or get help - if needed.

I had Carboplatin rather than Cisplatin and managed the chemo quite well.  For me it was a short infusion but I think Cisplatin takes much longer so be prepared with books etc for a long session each week.  The RT is normally over in less than 15 minutes from start to finish.

I am glad you have a supportive family and work.  I found my dog stayed away from me during treatment - maybe she did not like the smell of the drugs I was on??  You may need to be talking to work about and extended period off sick whilst you recover. Fortunately I am retired but I think it would have been 4 - 6 months before I could have gone back to my old job.  The treatment takes it out of you and recovery is slow.

Keep asking the questions and stay with us as you progress.

Thanks very much Peter - really appreciate it.

I like the idea of the chocolate eclairs!

I will add E45 to my list.

All the best, Claire

The others have covered pretty much everything you need to be aware of... you seem to be well organised and upbeat which is brilliant...

It's a tough treatment but it's not going to last forever and has a 90+% cure rate.... might be a fair amount of pain...it will be well controlled by meds... take everything that's offered... don't suffer in silence.

Before starting CRT I ate all the things I liked, curries especially, as I knew my taste and appetite would disappear... which it duly did... also went on a nice country break with my wife.

Best of luck.

Hiya.  Thanks very much for this. 

Yes, I'm conscious that my taste will disappear and so I made sure I got some gingerbread from Sarah's Gingerbread shop in Grasmere, Lake District.  I've also bought myself a random battenberg!

And am squeezing in a couple of nights/trips away before it all begins in earnest.

All the best, Claire 

HI Claire, not the most fun club to join, but here you are, and getting through this is what we do. Oracle HNC also have a Facebook support group, and I would also recommend the Mouth Cancer Foundation Support Group. You can find the sign up info on the Mouth Cancer Foundation website. It is a private group, so anything shared on there doesn't go anywhere else, and we even have a weekly Zoom meeting every Monday evening for questions, answers and support generally. If you need any advice or questions answered, here is a good place to start, or on those support groups. You will find people are always happy of answer questions and offer support and advice. I wish you the very best of luck with everything Claire.

Hiya.  That's great, thanks very much for letting me know about those. 

It's amazing what things I know now and what things I'm thinking about that I wasn't even aware of just a couple of months ago!

All the best, Claire 

Hi Claire, sending you the biggest hugs! Thank you for sharing with us. Everyone on here is very warm, welcoming, and very helpful if you ever reach out with questions or just to share more of your story. I found this forum just a few weeks prior to starting my treatment, and I'm so grateful to have found it! I had the same treatment as you, bilateral RT, and chemotherapy, but, I had seven weeks of RT. The treatment is hard, but you can do it!  You'll be on the other side of this before you know it. 

I'm 47 years old and approaching 3 years this month since finishing my treatment. My next check-up is in a few weeks, and, I'm praying to receive good news for this next follow-up. This cancer has a high cure rate, and my oncology team treated me to cure. So far, so good!  I hope to hear more from you and how you are doing.  Please take care, sending you all the best!! ~Tara

Hi Tara, thank you so much for your lovely message. 

I hope you receive good news at your next check up.

All the best, Claire