New here tonsil cancer

Hi! Feel free to ask me anything, no matter how insignificant it may seem. My illness was certainly managed by the medication; they gave me an anti-nausea drug before I left the chemotherapy suite, which I believe is standard procedure. Honestly, I only felt sick a few times and never actually vomited. I was determined not to have a feeding tube, and the dietitian was very supportive of this, even though I think she knew I would eventually need one.

Two weeks into radiotherapy, I realised I did need it, and to be honest, it was a relief. I had a nasogastric (NG) tube inserted that day. It was a straightforward process that took only a few minutes; it felt a bit strange, but it was manageable. They taught me how to use it over a few days at the clinic, and then a nurse visited me at home to review it. The tube was fitted on July 1, 2024, and remained in place until December 18, 2024. I only ever had one, and it was never an issue. It made it so much easier to take water and medication, especially since I suffered from significant constipation at first, and the NG tube was a lifesaver. 

I experienced mouth ulcers on and off, but they were minimal, to be honest. Yes, my radiotherapy was scheduled from Monday to Friday, with weekends off. My chemotherapy started on the same day as my first radiotherapy session and was planned to be administered every two weeks, but I only received the first two treatments. My advice would be to get the feeding tube as soon as you need it and to listen to the dietitians. Prepare for constipation and take action immediately.

Xx

How long was your radiotherapy treatment? Im not sure if im right in thinking that everyone seems to get at least a 6 week course at 5 days a week ? 

Hi  Thank you Geraint I really appreciate your reply ! I live in Wales but not sure id be up to climbing a mountain now let alone durning treatment well done ! So did you find the chemo harder than the radiotherapy? Im learning everyone's journey is different but most people are saying that the chemo is the worst . You have come so far and it really helps to read how people have battled through as im so afraid that i'm not strong enough mentally to do so ...ive never really been ill through my life ..ive an underactive thyriod and thats about it before this . Im trying to take 1 day at a time . I have so much to be grateful for in the fact that the doctors have said this has been caught relatively early compared to when they usually see it but I suppose its human nature to be scared of the unknown. 

Hi  Thank you so much for sharing with me it is so appreciated.  Did you have any surgery to remove anything ? Ive had the tonsillectomy but my doctors are saying that they feel the best option for me would be radiotherapy and chemotherapy not surgery to remove as the outcome of that is quite harsh to deal with and that they believe they can treat without. I have a meeting with my MDT on Wednesday.  When they did the tonsillectomy they are pretty confident it is contained to my tonsil and neck but will have that confirmed on Wednesday im assuming.  But they couldn't see anything that worried them . How long was your treatment from start to finish ? As in the radiotherapy and chemo ? Could you work at anytime? Ive kind of got it into my head thst I will be in constant pain for at least 6-8weeks ! 

Hi there Fudge, welcome to the group but really sorry you've had to join us. 

I live in Wales, can I ask where your treatment is taking place ? 

Cwtchs Debbie xxx

Hi Debbie , atm ive been between the Grange Hospital and the Royal Gwent Hospital.  Im assuming that my treatment will take place at Velindre Cardiif . I will find out on Wednesday.  There is also a new Velindre unit at Neville Hall Hospital so possibly there to ?  Xx

You are very welcome.

Yes I drove over from Leeds (3 hours) and we went up Moel Siabod and drove home, bonkers, a few days before my last chem. I did wonder if it was the steroids. However, we went for a short walk everyday which really helped me keep calm. But we will all have different ways.

I found the radiotherapy much harder.  I had 5 sessions of chemo and then at the end of each session I had a bottle with a pump that fed me more chemo over the coming week. I  had a 6th dose during radio which apparently makes the radio more effective. I was supposed to have a 7th but my bloods were shot. The problem I had with chemo and some time after was constipation, not pleasant I did have to have a stay in hospital for that. However, the chemo was just a fog for the most part and I was never sick.

The radio was the problem. It caused me to have lots of ulcers and that caused a lot of pain. I was using  morphine, Ibuprofen, and some other pain killers, aspirin mouthwash and saline wash. Then a nebuliser to help with mucus build up.  All the pain and disturbance in the mouth, throat means eating is very hard, I had everything liquidised. I was offered a tube but thought I could do it without and got lucky. I know many people opt for a feeding tube and made be right to do so as  Miclee  (above) says . A phrase I heard all the time is , "we are all different."

One day at a time is how to do it. You will be strong enough I am absolutely sure. I did find talking to the MM counsellor helped me. It's a funny (not funny) situation I did what I was told and everyone just did what they had to to me and around me. People say they have fought cancer or that you are brave, strong etc but in fact I found I did nothing really but what I was told to do.  You and your family will come through it; it's not about being strong or fighting cancer IMHO. The team, if Wales is the same, of NHS people were wonderful. I had a pre/ during treatment team and then an after care team. Oh, and take notes or better get someone to take notes and ask lots of questions of your medical team. One report we saw about me from the consultant said, Mr Evans and his wife ask a lot of questions." And, so we did. If we had not I'd have been on palliative care for stage 4 and might not be here now.

It sounds like you have been caught early and if it is HPV virus caused I understand results are very good. 

Best wishes

Geraint

Yes mine is HPV ...you have hit the nail on the head where you say about not being brave and just did what you were told ! Thats excatly how i feel atm ! People are saying to me ( all of who have been amazing ) you're brave Wendy I couldn't do it ..but tbh I don't actually think ive done anything other than been swept along by doctors / hospital appointments.  I have an absolute phobia of needles and must of had close to 30 the last 3 weeks for something or another but still feel I will always have that phobia. Im also defenitly a person who needs a plan ( A,B & C) ive also felt the need to a little in control in both my personal and professional life ( not a control freak lol but needs to know what's going on ) and ive not felt in anyway in control this last 3 weeks . Your point about taking  notes is a good one ..I am keeping a folder with all my appointment letters etc in there but I think i will also buy a good notebook thank you ! I will defenitly ask questions ! And the wonderful thing ive already realised about this group is i can ask anything ...I have a feeling you are all going to be an absolute godsend to me over the next few months and I am already so grateful that I joined ! Thank you 

No problem. Unfortunately needles get to be the norm for a while. 

Hi, I didn't undergo surgery. I had the option and was fully prepared for it. The main tumor was located at the base of my tongue, and the surgery was to be performed by a robotic system at Leeds General Infirmary, which is just a few miles from St. James's Hospital, where the oncology unit is. When I spoke with the oncology team, they advised against delaying treatment with surgery, as I would need radiotherapy regardless, although I might be able to avoid chemotherapy. I decided to pursue the radiotherapy and chemotherapy route because I didn't want to delay my treatment, even though I thought that if I had surgery, the cancer would be gone. However, that wasn't entirely accurate, as it was also in my lymph nodes, which could have been removed. To be honest, it was quite overwhelming. My treatment lasted a total of six weeks since chemotherapy was administered alongside radiotherapy every two weeks, but ultimately, I only managed to complete two chemotherapy sessions. Xx