Persistent side effects 4 months after completion of tonsil cancer treatment

The treatment is harsh, some do get off relatively lightly with side effects and pain, but for most it is a long slog...takes about 6 months to a year to exit from the worst of the treatment side effects...they did mention the 6 week period but that is not the case for most...taste and appetite are reported missing for some time, fatigue and PTSD hit us out of the blue, sleep patterns are disrupted, dry mouth is an issue...lots of little issues...but things do eventually improve...we get to our new normal...life goes on...and it's not bad at all.

Thank you Michael, I hope you're doing well, I really appreciate your reassurance; you've been there and got through it which is great to hear. Although 6 months -1 year sounds like a long time, I'm 4 months post-treatment already; the last 2 weeks have felt particularly hard & I think getting the nasogastric tube has set me back a bit, its something new and uncomfortable to get used. I also had bowel cancer previously; I had stage 3 colorectal cancer in 2023, chemoradiotherapy and surgery with permanent colostomy formation but for that the surgery was the biggest obstacle to overcome, this time its very different; can't wait to get through it and get to my new normal. 

Marie (Boscobel)

Hi Marie

After the 12 week CT/PET scan my consultant told me that it would take 6-12 months to be back to some sort of normal, he was bang on...things slowly start to improve around the 5-6 month mark then accelerate, food starts to taste better appetite improves, we still get setbacks now and then but learn to deal with them...I had a PEG feeding tube for a few months ...bit of a pest but a life saver...dry mouth is an ongoing issue...part of our 'new normal' .

I had an anterior resection for the bowel/colorectal cancer, quite stressful, but the CRT treatment for head and neck cancer is a whole different ball game...

Keep posting... loads of great advice and support on this forum.

Good luck

Thank you so much for your support and sharing your experience Michael, its good   to hear that what I'm experiencing is normal and that things will get better. Also that my timeline and severity of side effects is comparable to everyone else who is in this situation, its very reassuring to know that, the whole thing can be overwhelming and I find, really quite isolating. 

Marie 

Hi Boscobel, although it probably doesn't seem like it you are still in the early days of your recovery. The treatment we have gives our body a real hammering which takes a lot of recovering from, it can take a good while to recover from it, and it often seems like one step forward and two back. It's good that you have now been fitted with a feeding tube, nutrition is very important for recovering, try to take things one day at a time, allow your body to heal itself which it will do, there is no set time for recovering some people take longer than others. Don't worry you will get there in the end. Keep your team updated on how you are, you can ask any questions on here someone will always answer if they can.

Ray.

Thank you so much for your post Ray, it is so reassuring to hear things will get better. I don't want anyone to have this experience but thank goodness there are those who have been through this before me willing to share and support. My diet had dwindled away to practically nothing before the tube was put in so that must have been contributing to me feeling terrible. The feed is playing havoc with my colostomy so I need to get that on an even keel especially as the nasogastric tube is to be exchanged for a PEG tube and I expect the feeding will last for a few months. I'll put one foot in front of another for another day and keeping looking forward. I'm so grateful for this forum.

Marie (Boscobel) 

Hi Boscobel,

Firstly, well done for getting through the treatment and hopefully this is you well and truly on the way to recovery.

One thing we do all have in common on here is that our treatment is absolutely brutal. However, the way we respond to it is very different, which is why forums such are these are often very comforting places to come for advice (especially compared to the likes of Dr Google").

2.5 weeks into treatment (I was 6 weeks radio, with chemo at weeks 1 and 5) I had started to convince myself that I was going to be one of the rare ones and sail through as hadn't really experienced any side effects up until that point. Come week 3 it was like hitting a brick wall and went downhill very quickly from there - ended up spending the whole of week 6 in hospital). 

If I thought the end of treatment would mean the end of side effects, I couldn't have been proven more wrong. It was a good few months before any kind of "normal" started to appear, but it did and I'm sure it will with you too.

I finished treatment in June 2024 but still had the feeding tube in until early 2025 as eating was still too difficult. Maybe I've been one of the luckier ones but - some "dry" food aside - I'd say my eating is more or less back to what it was prior to everything. If somebody had told me I'd be enjoying even a mild curry back then I'd have laughed (or cried) but was out again just this weekend there and devoured a very spicy Madras  as well as a few pints.

Still get very dry mouth, quite frequently, but have pretty much accepted now that it's just my new normal, but always just consider it a very small price to pay for still being here.

Actually had a good chuckle with the ENT team when I was in last week as I've put on just under 2 stone in weight since I was at my lowest post-treatment point in late 2024 - soon all those new clothes I bought are going to be too tight.

You will get through it, and as much as it doesn't feel like it, it is still early days. It can feel like a very long dark tunnel, but there is absolutely light at the end of it for you

Thank you Fifeflyer75, I've been really encouraged by the replies on the forum since I posted last night, when admittedly it was all getting on top of me. Thinking back to Nov 25 I coasted for the initial couple of weeks of treatment then, very similar to how you describe your experience, it hit me like a ton of bricks & I was hospitalised for sepsis just as the radiotherapy came to an end. I'm really taking heart from knowing that everyone feels the same i.e. that the recovery seems endless, but there is light at the end of this particularly unpleasant tunnel, I'm hanging on to that. Having always been someone who enjoys eating, cooking and baking, not being able to tolerate diet & losing my sense of taste came as a shock, I didn't think anything could blunt my appetite, but again, looking through the posts on the forum, it wont be forever albeit probably a bit altered when it does come back.

Marie   

Hi it’s still early days my oncologist said he was looking ti cure me but also said he would take a years out if ny life to give me many more. He did both. Nutrition and hydration is certainly the key to making a good recovery  . I had my ng tube fitted week 3  of treatment and that enabled me to make a decent recovery fingers x  x now you've for the ng tube you can ; get in track. I was still in morphine around z the 3 month mark and did a long slow withdrawal from it took around 5 weeks. I was maintaining  weight and sufficient calories week  and was  to be able to sip ensures orally and start introducing  soft foods. We all recovery at different pace there’s no right or wrong way. There’s only your  way. Good luck with scan results   I was eating 2000-2500 calories every day for around 15 months and drinking z2-3 litres of water then the weight came back so our went the cream cakes. 
nest wishes Hazelmx

Thank you for your reply Hazel, "Happily getting on with living always happy to help", is a terrific maxim. I understand that medical teams are reluctant to give specific times for recovery and duration of symptoms for many sound reasons and of course we do all differ in what we experience, its severity and for how long but over the past few days its been such a relief and very reassuring to hear from people who have actually gone through this experience & are happy to share their personal timelines, for the 1st time in ages I don't feel so discouraged and stuck; in fact, from what I've been told and read on posts from others who have been through this I'm pretty much on course and I am moving forward albeit slowly.

Marie (Boscobel)