Tonsil cancer. Anyone not had surgery as part of treatment?

Hi

Did you have the “odd” feeling too? Sometimes I worry something is wrong but he says he feels fine just odd! I’m dreading the next few weeks. I know things are going to happen and so does he. He says he wants to talk to others who are going through it as he can’t talk to me so I’ve pointed him here. Or even to talk to people at chemo, anyone who is going through it.  I know he is terrified. We both are. Thanks for your support guys. It’s helps so much. 
xxxx

Not really but then I didn’t have chemo. 
The RT delivers a low dose to the base of the brain. It’s unavoidable and that’s why we feel so tired. It’s reversible don’t worry, just takes time. I was a year before the fatigue left me alone. 

Hi Janene,

The response to treatment for this cancer really is unique. I know some say that two weeks after treatment finishes side effects improve, it didn't for me. It has taken a long time! As I type I'm sat outside work, my first day back (well couple of hours) and I've been off over a year. Be kind to yourself, your hubby needs to be kind too. Time certainly helps and has definitely improved things for me. I still use fortisip drinks to up my calories and still take regular pain relief. I felt I was failing because things didn't improve two weeks after treatment finished but I realise now I wasn't. No one can tell you exactly how you respond, but the advice on here is great. I have lymphoedema in my tongue and mouth and have recently been prescribed a medication for arthritis and it's helped me and I'm in less pain. I would definitely recommend salt water rinses several times a day, this also keeps the oral thrush at bay and helps with pain. I have a huge scar from treatment on my neck, I used moisturiser but it didn't stop it. Whatever hurdles you come across, there's always some help on here XXX lots of love to you both XXX 

I think for me anyway with my husband starting treatment next Monday.... we have decided to read people's views and comments but have in mind everyone's journey is very different. Oncology told us mhusband will probably go to week 2 or 3 then need 3 months off work. Whereas I read your experience which is massively different from their advice and appreciate yours and others are different and ts is based on loads such as age , health, threshold and tolerance and mind set and health factors thru treatment.  Its lovely you have gone back to work and hopefully this will help you alot with a w focus. I will update people of our journey starting in 7 days and I'm not looking forward to this but my husband is positive and that helps ! X keep smiling everyone it's a snippet of your life you will get back

P.s my husband is 52 no other health issues,  fit and uses the gym 2 times a week and walks our labradors for an hour daily so bear this in mind. His BMI is raised slightly but hey who's isn't  

Hi Janene

I found it was mostly protein based foods that tasted of metal.  I was quite thankful when I managed to get something down that didn't taste of anything as everything else either tasted vile or like chewing on a pocket full of coins.  It would be really good if he could experiment with small amounts of different foods to see which ones are acceptable, even if they taste of nothing. 

Try not to overthink things too much but take each day as it comes.  We don't all get the side effects to the same degree.

I can understand your husband feeling odd.  Pleased he's getting plenty of rest - a little gentle walk can help too. 

Don't hesitate to mention to his team if he's in pain or not coping with something.  There are all sorts of medications available to help and sometimes they might need tweaking.

All the best for this week.

Linda x

Hi Sammas

You're so right.  That's a great attitude to have going into treatment.  It's good to be aware of side effects but no one knows exactly how they'll respond which is why you need to take each day as it comes. 

Hope all goes well and look forward to reading your updates.

Linda x

Hi, I wasn’t offered surgery (other than the biopsy) as an option due to the advanced state of my cancer so went straight to chemoradiotherapy. As others have commented, this is though but doable. Experiences do vary. I coped without any opiates but the constant nausea floored me. I had a RIG tube fitted at the outset and became totally reliant on this for taking my fortisips.  I also had to change the chemo due to some neuropathy. Completed my treatment at the end of August and have now regained half of the 12 kg weight loss. Taste, dry mouth and lymphoedema still an issue and limits to what I can eat but feel so much better now. Good luck with treatment and trust your  MDT.

- John

He is in a good place then with his fitness levels.  He won't be doing quite so much and don't let him push too hard, but try to encourage him to continue to take the dogs out WITH YOU for short walks.  It will do him the world of good. 

As to the actual journey; you've summed it up, we're all different.  Just shout as you hit obstacles as someone will have been there before and can offer some advice.

1. Hi all, just wondered if anyone noticed this through having covid? Only I tested positive for covid and literally my tonsil and neck were swollen overnight! So originally just thought it was that. I know some of you have been pre covid but anyone in the same boat?