Richard here from Yorkshire, just joined and saying Hi !!
My diagnosis - Base of tongue cancer, stage 4, prognosis is curable with 7 weeks of daily radio and chemo , starting in a couple of weeks.
Any advice to make the road smoother will be very welcomed
Thanks all and hope your weekend go well !!
Hi Richard. Welcome. I’m Dani and I’m a base of tongue cancer survivor a whisker away from my five years.
Advice ? Take a feeding tube if you’re offered one. Don’t fight the treatment by trying to be brave. A few weeks are going to be pretty awful. Take your pain killers by rote. Keep your head together, this treatment is going to cure you.
Recovery is a marathon not a sprint and you aren’t going to be anywhere near your new normal till six months.
My consultant said the treatment would be a real challenge, The cancer would take a year out of my life but I would hopefully be cured. It was it did and I am.
That’s it in a nutshell
Along the way you’ll have many questions so stay with us. We’ve got your back.
Base of tongue cancer. Out of radiotherapy January 2019
Blog about my cancer.
Hi Richard welcome to the group. The treatment you are having, is more or less what most of us on here have had, it's not a walk in the park, but it does give high rates of cure. While I was having my treatment, my wife used to apply Aloe Vera gel to my neck, after each RT (only after not before) it works quite well. If you are offered a feeding tube, I would advise you to have it, they have been a lifesaver for many of us on here. Keep your team up to date on any side affects you are having; they will give you something for them. Any worries or questions, just ask away on here. We are all here to help if we can.
Hi Richard welcome to the club none of us one wanted to join. I’m a Yorkshire lass treated Leeds cancer centre 5 years ago. Stick with us follow Danis advise re tubes etc. here to help ask any questions.
Treatments brutal but if I csn do it anyone can.
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 5 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
Glad you found your way onto this site from another Yorkshire Lass currently in treatment at Weston Park Sheffield,
Best advice I was given Stay off Google ! its not helpful wrapped me up lin knots , As everyone has said take a feeding tube its currently my lifeline as Im struggling to swallow anything. No question is a daft one ! These wonderful people have been through it worn the t shirt and now living their lives but still support all of us who sadly have like Hazel said Joined the club nobody wanted to be in!
Get on top of ypur pain relief Im trying it at the moment and good luck take one day at a time ( cross it off my big calendar)
All the best Debbie
Sorry to hear your news , I had a PIG fitted( also PEG ,RiG or Nasal Tube) every trust has there own way of inserting a tube into your stomach .
My best advice would be where possible have it fitted with a min 1 week preferably 2 weeks before you start treatment as it gives uour body 2 weeks to recover .
I was given a sedative and throat spray to numb the area .Not a pleasant procedure I wont lie but a lifesaver for me( and many others) Was painful after op ( make sure they have strong painkillers for first 2-3 days) eased off by day 7 now its my little feeding friend .Buscopan helped me first few days ss advised by Hazel and Dani helped with trapped air and cramping .
The hospital give you your feeds fortisips/frusben Nutricia they are all different flavours full of liquid protein calories and supplements you need .Ive just moved onto a pump which I hook up too and have been given a little rucksack to wear so I can feed slowly through out the day .Some people feed via pump overnight or just hold a big syringe and let it drip into their tube.Everyone is different , its what works for you.
Im now using it for fluids /food and medication as swallowing too painful .
Peg nurse checks it every week Im on week 4 all good so far Not painful at all.
Hope this helps any other question's just ssk someone on this fabulous site will answer x
Good luck with your treatment
Wow, thank you All so much for the inspiring, welcoming and supporting replies ... Some superb advice there which I will grab with both hands and run with !!!
It's so good to see so much positivity from everyone, and will certainly keep involved and in touch on here , nothing better than being part of a genuine friendly and supportive community all pulling one another
Thanks again, and apologies for not replying individually on this occasion but it goes out to you all with the same force of gratitude and meaning
Thanks again for welcoming me onboard - another pair of hands on Deck !!
Speak soon and all enjoy the weekend. X
Prmary on Right Tonsil and 3 lymph nodes in neck then moved to base of tongue with activity in left Consultant said not to worry treatment the same 7 weeks Radiotherapy 2 or 3 chemos hoping its only two
If you want to see more just click on my pic it will take you through to my profile x
Hi Richard, sorry to hear you’re joining our group, but hope you find the advice and support useful. I agree with everyone’s comments about having a PEG fitted, you won’t be able to eat much as the treatment progresses, so you’ll rely on the Ensure drinks which you may be able to drink or have the option to put through a PEG. I found it helpful to cross each appointment off on the list I was given, seeing the end in sight was a positive. I hope you’re not too far from the hospital, going there five days a week can get a bit much. Make sure someone takes you. I found that, although I felt ok-ish to drive, the mask pressed so hard on my eyes that I had blurred vision for a while after it was taken off. Will you be given a parking permit?
My tongue and mouth became very ulcerated and sore, so ask for pain relieving spray if this happens to you. I had the strongest possible one but it needed to be sprayed onto a cotton bud first then applied to the ulcers. Do your swallowing exercises, as much as you can, I don’t think I did enough and my swallow isn’t as good as it could be now. My chemo radiotherapy was almost 10 years ago now, so there have probably been changes in things like mouthwashes, and gels and creams to help with the burn. Take everything you’re offered. Do you know about The Swallows charity for head & neck cancer patients and caregivers? Worth a look, and they’re able to send you products to try. As other people have said, the treatment is brutal, you know you have to get through it though, so you just get some inner strength and do it. I wish you the very best of luck on your journey, keep in touch.