Treatment starts on Monday

Please do not feel so down, you must take things a day at a time as we all react differently, i don't know where you read all the negative feedback. You have to start thinking positive otherwise you will find it harder to cope, im surprised you have not taken your dietician's advice and declined a feeding tube as it could be something that would have helped you through the treatment. I dont know what the side effects of radiotherapy are for tonsil cancer as it was targeted on my lower jaw where my side effects were not that bad. I know I'm more of a positive person rather than being negative and i strongly believe that's how i got through my cancer journey a bit easier. I wish you all the best for Monday, you can do it, take care.

                                                                                Chris 

Hello Mark!

I dont exactly understand why tonsils cant be removed and have to be radiated, mine were long ago. Also why are you so scared of the peg. I have had mine for five years and I can assure you, as long as you have a good peg, the monarch one, you have nothing to be scared of. Most of the time you wont even 'know' it is there. As you have a 'forces' career you shouldnt be scared of a peg. You cant stop the side effects, all of us here are living with them, and we all try to have as few as possible. You know the alternative, which can be a lot worse, so you must accept this. I also agree that I was over radiated, the doctor says that she gives the same dose to everyone, and I say that cant be right people are not the same. There ought to be some way of giving a bit at a time and only giving the 'full' dose if really necessary. You have to get a 'grip' on yourself like everyone else here and if not it may affect the outcome of your treatment.

I am sure you will get over it, after thinking more about it, and I wish you all the best.

Hi Mark

I am sorry you are feeling so despondent. I had a different cancer to you and yes the radiotherapy can be challenging and I was also apprehensive about it, but I have now had radiotherapy at different times on both sides of my face and got through. Yes there are side effects but these can vary from person to person. The painkillers make it more manageable and relying on the experience of your health care team really makes a difference. Radiotherapy may sound antiquated but I know from my first experience in 2013 to my second in 2020 that there was a big difference. They targeted the area much more closely the second time and I did not get all the side effects that I got the first time.

You have to take one day at a time and count down the days and you will get through.

Please reconsider the feeding tube as I know it can be a real life saver from reading the experience of others. It takes the pressure of trying to eat off when your mouth can be very sore.

If you are feeling really down please consider going on an antidepressant as this will help you feel more able to cope with your situation. It is not weakness to seek help in this way and can make a big difference.

Talking to someone can also help. Macmillan has these resources. I had some very helpful info from the Macmillan nurses and I’m sure they have counselling resources also.

Best wishes for your treatment. It will be finished quickly and then you can start working towards your recovery.

Lyn

Unknown said:

There must be some who have got through this unscathed or with few side effects.

Yes me, lots on the forum who stayed to help others and countless others who leave their cancer behind to get on with life.

My RT was to both sides as my tumour was on the base of my tongue and the tongue is regarded as a midline organ. 

The only thing I notice is my saliva is not as it was but is perfectly adequate and my mouth feels dry where it actually isn't. 

Unknown said:

is there anything else I can do to slow down the burns 

I think to myself What if I drink ice water after treatment  or start using the rt mouth wash from day one.

Yes dive into the Caphosol and Gelclair as soon as you start. That does have a protective effect but the radiotherapy doesn't cause heat burns so icing will have no effect I'm afraid.  The other products like Difflam and Oxetecaine just numb the pain a little.

Unknown said:

I've decided against the feeding tube, I've failed at building myself up before  treatment as I don't like food or the process of eating so my dieticians menu was scrapped on day one.

If you have resisted the PEG you can always have a nasogastric tube placed. I did at the end of week three.If you don't keep your weight up they are pretty swift at getting you into hospital for your treatment otherwise.

Please tell me to mind my own business but you reference your time in the forces quite often. Is there any chance you have PTSD? If there is then maybe approach your GP for some temporary help to get you through treatment? Lots of people here have had short courses of antidepressants and sleeping tablets to get through. I don't know where you are treated but is there a Maggies Centre you can pop into for a little moral support?

Macmillan offer some free counselling through BUPA so check it out HERE

Last but not least. Chris is right. Take a day at a time and you will get through. Six weeks, and the weeks of acute recovery that follow, sounds like a lifetime but it passes and we heal and return to a normal we can cope with.

I wish you the very best in this 

Hi Mark. I remember clearly the feeling of wondering how I would get through my treatment given the bleakness of the description of the side effects. My cancer was described as "local advanced" with the primary being in one tonsil but had spread to the base of my tongue and and lymph nodes on one side of my neck. My radiotherapy was from both sides of the neck, though one side got a bit more than the other.

I personally found having a PEG tube very useful since my mouth became too painful to even drink water at the peak of my treatment. Everyone is different, so you won't necessarily experience this. I have a friend of a friend who went through the whole of their treatment without needing a PEG. In general if you're healthcare team recommend having one fitted then I would be tempted to do it myself. When I switched from trying to eat real food to using fortisips via my PEG, I was actually surprised at how much of a relief this was. As I lost my ability to taste food very early on in the treatment, I did not not appreciate how much of an emotional drain it was having on me trying to force myself to eat enough. Switching to the PEG made this mostly effortless, though I did used to feel quite bloated at times with all those fortisips sloshing around inside me before I got used to it.

As others have suggested, starting with the right mouthwashes early in the treatment is probably a good idea. I made heavy use of difflam (benzydamine). I've heard some people find gelclar good if you start it early in your treatment, though I don't have experience of that myself. I followed the guiadance of my healthcare team as thoroughly as I could. I didn't try to tough it out. If it hurt I told them. If they offered me new pain meds I took them. Having the right meds makes a big difference, or at least it did in my case. 

I won't lie, it was a pretty tough journey at times. Some days I felt mentally strong and up for it. But most days I felt fragile and broken. My philosophy was that it didn't really matter wheher I was feeling strong or broken. Each day happens whether I'm ready for it or not. The treatment progresses, the medical science keeps doing it's thing. One day at a time, time passess, and you come out the other side. I'm now two months post treatment and slowly continuing my reovery. Things are easy now in comparison to during the treatment. I wouldn't say I'm at the end of the tunnel, but I'm definitely standing in the first of the light. One day at a time.

Thank you everyone, 

I honestly thought id feel elated this coming weekend as the wait has been frustrating, but its the opposite, as suggested i need to man up and get on with it.

had my covid test today i just hope and pray its negative as i really want to get on with things now.

ill post from time to time if i can, maybe it will help others who are starting their treatment soon

Mark

Hi Mark i was radiated on both sides as well plus another lady on our what’s app group  also had cancer in both tonsils. She was 60 when diagnosed last October she’s come through treatment snd getting her life back so knuckle down  you can do it.  It’s not common h p v cancer in both tonsils but it’s not an unknown.

I was radiated both sides has I had several lymph nodes including one very close to spine so no op was possible. Ad for the burning Dani has covered that.  Used gelclair and caphosol. 
I too had n g tube fitted at end if week 3 I couldn’t eat so had no choice. Weigh loss is not allowed my trust would admit you if you list 10 % body weight and you don’t want that 

All l that I can say I am 100 % me with reduced saliva i am not 50 % of the person I was. I walk in the hills ride my bike travel abroad ( when COVID allows) eat pretty much everything I did before apart from a spicy curry. 
so get you big boy pants on and knuckle down once treat starts everything falls into place honestly.
you do need hydration but more importantly nutrition is vital to treatment snd recovery

Hazel xx 

:) big boy pants are ironed and ready, watched my grandson play football today, then had 1 pint to say goodbye to my old friend alcohol for the foreseeable future, I plan to hydrate and walk a few miles Saturday and Sunday then put a smile on and walk into oncology on Monday morning.

Thank you guys, 

Great news I walked in every day with my head head high humming Walk tall walk straight and look the world right in the eye. You’ll remember the song Good old Val Doonican 

Alcohol over rated anyways. Lol. 
h xx

Im sure your big boy pants will get you through the treatment , i remember having my last cigarette just before my operation in 2008 (although i was only on two a day ) also my last drink until i felt comfortable again to drink. You will find once Monday is out the way you will feel a lot better as its always a worry going into the unknown, so good luck for Monday Mark.

                                                       Chris