Hello I am just starting my journey and any advice will be appreciated

Hi Bill 

sounds like you coming out the other end, I wish you well.

thank you for your advice, yes I was hoping the feeding tube settles down and to be honest I think I probably did to much yesterday getting on and off the scanning table when they moulded my radiotherapy mask.

thank you

Thank you for your supportive message.

I am very lucky I have a army of family and friends behind me.

take care 

I did wonder!! Yes it was me, thanks so much for helping me pass the time that day. Glad you found this but sorry you had to.

One tip, apparently, when you are going through treatment you give the nurse your parking ticket and get it for £1. Doesn't make us feel better but makes your wallet healthier 

Thank you for your reply and advice.

sounds like you are coming to the end of your treatment, I wish you well on your forward journey 

Thank you for your reply and I will read your blog.

best wishes going forward 

Hi Cal, welcome to the community. I think we may live in the same town (going by your user name!) but I had my treatment for base of tongue cancer at Nottingham City. Both NHS trusts have been excellent at keeping services going throughout the pandemic and it looks like all the preparation for your treatment has gone pretty smoothly. It’s also good that your cancer is HPV positive as I’m sure you know. I finished my treatment in November and like you I had a stomach rig which was a bit painful at first but once it settled down it was an absolute godsend and I couldn’t have managed without it. I  was scanned 12 weeks after my treatment ended and given the best possible prognosis of a 90% + chance that the cancer has gone. The treatment was hard but it was definitely worth it. It affects everyone differently but it’s more than likely that at least one of us on here will have experienced whatever side effects you experience so don’t hesitate to ask. No real advice at this stage, just wanted to say eyup

Hi Cal

I’m coming up 18 months since finishing my treatment for HPV+ tonsil cancer. On the plus side as you’ve no doubt been told it does respond well to treatment. If they’ve told you the treatment is rough they’re not kidding. I had to get through it without the gastric peg but the one thing I would say is no matter how hard it gets to eat, keep trying as a few weeks not using your mouth and throat to get even tiny amounts down can take months to re-learn afterwards. The whole of your team are there to support you, make use of them it really will help. 

All the best, Kevin

Hi CAL, and welcome to the Community. First thing to say is that the guys on here are all experts because they have all lived through it and have experienced the challenges presented by the treatment. I would therefore echo what others have said and suggest you post on here any questions you may have.

I am now 3 years post chemo-radiotherapy (I also had a selective neck dissection post therapy). HPV P16 Positive; Pharyngeal primary; two secondaries in lymph nodes.

Everybody’s cancer is a bit different and everyone’s treatment is a bit different, so you may not experience all the same side-effects as me and have some I didn’t. So I can only offer some practical tips based upon my own experience. In no particular order:

1 If you are offered Diprobase or similar to keep your neck moisturised during RT, I found it helped to start using it from the outset. Don’t wait for skin irritation to start!

2 Start to keep a dedicated record (some sort of diary or notebook), to keep track of all the things you need to do: medications, PEG maintenance, calorie intake, appointments etc. It’s very hard to remember everything, especially when your brain starts to get a bit foggy!

3 After using (or flushing) your PEG, don’t forget to close the tap before letting the tube drop. I sprayed the bathroom with stomach fluid more than once!

4 Do try to keep your weight up as best you can, otherwise your mask may not fit. I found that milk shakes made with double cream were helpful. Anything with high calorific value that you can get down your tube.

5 I found that one of the biggest challenges as radiotherapy progresses was gunk in the throat. Hard to get up and hard to get down and you may feel like you are choking. Advice from the team is readily available for this, but when it was particularly bad, I found it helpful to sit with my head over a bowl of boiling water with some drops in it of oil of balsam (or similar) and a tea-towel over my head; steam treatment if you like.

6 Don’t be a hero! If pain is a problem, ask your team for stronger meds! You are absolutely entitled to get through this as pain free as possible

7 Constipation can be a significant problem, so don’t forget to use whatever laxative treatment they prescribe once you are into significant amounts of morphine. However, when your food intake is pretty much all liquid there won’t be much to shift and the laxatives can take you to the other extreme (I had to wear disposable nappies at night time for a while!).

Just a few thoughts as they came into my head. Just to say, you will get through this and prognosis is good. Please bear in mind, however, that recovery is a long and slow process; a marathon not a sprint. You may never be completely “back to normal”, but you might find that you appreciate life more! I know I do.

Trev

Hi Trev

Thank you for taking the time for your valuable experience, good to hear you are 3 years down the road.

Thank you again these tips have been helpful

Take care 

Hi Kevin 

Thank you for your message, great to hear you are 18 months down the road, congratulations. 

Everyone’s advice has been helpful and i am focused for what lies ahead, the good news is they have brought the start of my treatment forward a week so I start this coming Wednesday

Thank you again