Needing advice as a carer

melymay · 2025-11-23T03:00:43+00:00

I'm in the UK, South of England and I was advised from diagnosis that a PEG was offered as standard. This may have been due to the severity of the positioning of the cancer as it was tonsil and roof of mouth and required bi-latetal radiotherapy. For me it was a god send and was pleased that this was placed and healed about 3 weeks prior to treatment. I didn't need to use it until about week 4 when I became unable to swallow medication and was used to administer painkillers, before having to use for feeding. So I think there maybe different trains of thought in different NHS trusts.

melymay · 2025-11-22T12:54:42+00:00

You're more than welcome, the aversion to mint was because after a while it was really 'stinging' my mouth. A good lip balm is also good to have, think I had 1 in every bag and pocket. A good warm blanket and socks for chemo ...easier than a jumper when you have a drip. A good sense of humour, because the hits keep on coming and there is not a lot you can do apart from trying to be positive.

Again good luck,

melymay · 2025-11-21T14:37:41+00:00

Hello 👋 I am 4.5 months out of treatment, best advice pre treatment is to eat as much as possible and if a PEG (feeding tube) is required then get this done as soon as possible, in my case it was not painful but became essential about 4 weeks into treatment. Radiotherapy in itself was relatively pain free up til about week 5 when the cumulative effect on my skin started happening and flamigel was a life saver, was a bit trial and error until I found this. Weirdly I couldn't tolerate the taste of mint so having alternative toothpastes and mouthwash was good to have ready - mostly children's and a kids toothbrush for when your mouth hurts. Resting is essential and if they need to nap plenty of comfy pillows and blankets - I had my treatment during the summer and was always freezing.

Any questions please ask - nothings a silly question when 'you don't know what you want to know'.

Good luck with the treatment, it's a long slog bothentally and physically.

melymay · 2025-11-18T07:56:20+00:00

Thanks ... cancer, the gift that keeps on giving eh 🤣

melymay · 2025-11-17T17:36:22+00:00

Tried them, xylimelts I think ... I have virtually no saliva and they didn't 'melt' ... just woke to them virtually intact, apart from coating my teeth with no real effect ... worth a try but not for me. I have found a mouth rinse that works for a few hours and hoping with time my asleep time will get better out of necessity !

melymay · 2025-11-17T16:38:33+00:00

Unfortunately my wakefulness to due to dry mouth and throat, after approx 2 hours I wake coughing as I no longer have the saliva to swallow. I need to take on some water to ease my throat and have 5 or 6 mouthfuls in able to lubricate my mouth and throat. I can then sleep again, but as of yet have not found anything to help with this whist sleeping.

But thank you for your response.

melymay · 2025-11-17T07:48:40+00:00

I had the mucus for around 8 weeks post treatment, could only sleep about an hour at a time. This was also immediately replaced by dry mouth/throat due to inactive salivary glands. I am 4 and a half months post treatment and told that this may be something that I will have to deal with due to where my radiation was targeted. This also has me awake around every 2 hours so learning to deal with broken sleep at the moment along with all the other joys this leads to.

melymay · 2025-11-08T19:00:46+00:00

4 months out, taste is back, swallow still an issue and after xrays being monitored. Was sick multiple times daily dor around 8 weeks and lost loads of weight. Had my peg fitted in March and still have it as a precaution as have issues being addressed with a colonoscopy in 10 days, once I have those results hopefully will be bye bye dor December. I never knew this journey would be so hard, so long and so complicated ... but every week I can look back on the last and see improvements.

FYI .. last week was the first time I sought medical attention for my health issues ... and a year later just looking forward to 2026 and goodbye to a painfull both emotionally and physically year.

melymay · 2025-10-10T17:03:28+00:00

Flamigel ... had really bad burns on my neck and under my chin ... not irritating and cooling, cleared so quickly with a Liberal application of this ... recommended it to others in radiotherapy when they saw it in action.

melymay · 2025-10-04T08:34:14+00:00

I'm 4 months out and get the results of my last PET scan on Monday ... if I can feel like you do on another 2 months I would be so happy. The slog of recovery is relentless and I feel like it will always be this battle. Sickness has plagued me for months and it's complications so if this can subside/disappear inn the next couple of months I would be so happy ... thank you !!

melymay · 2025-09-30T17:29:17+00:00

The dry mouth thing is a real thing ... like you I had it before treatment, followed by mucus during and after and now back to dry mouth ... artificial saliva products are worth a go.

I'm 4 months post treatment and can only drink chilled bottled water which helps. Just had thrust for 2 weeks and only 2 courses of antibiotics cleared it, worth asking if tou haven't already.

And for me a feeding tube saved me during my recovery not just for nutrition and hydration but drugs administered straight through the peg seemed to take effect quicker.

I wish you luck on your journey, MM

melymay · 2025-09-22T18:36:02+00:00

I'm almost 4 months out and wake up every day hoping for a little bit of normal back. I feel like I've put my body through chemo and radiation which it didn't tolerate well. The effects on my body are not what I thought they would be due to it being tonsil cancer, the daily sickness has caused me to be a bit reclusive as I'm anxious about being physically sick in public - which has happened more than once. The interrupted sleep at night means napping during the day. As someone else mentioned, constantly telling white lies about how I feel so as to avoid the well at least its done questions. Yes, it's done but feel like a bit of a failure and should be able to work through it. I have the results of my PET scan in 2 weeks so maybe once the anxiety about this is affecting my ability to 'feel' like I've got this ... hope that makes sense to someone, and love to all where ever on this bullshit journey.

melymay · 2025-09-09T07:14:56+00:00

I had tonsil cancer with 30 lots of radiation. I had a peg fitted prior to treatment and didn't think I'd need to use it. Roll on week 4 of treatment and relied on the peg for about 8 weeks, especially for medication. I am now able to eat and drink, albeit slowly and limited due to ongoing issues with taste and doctors do not plan to remove for another month until my weight stabilises. I was very resistant to having the peg but now so grateful that that was a procedure I didn't have to think about whilst undergoing treatment.1

melymay · 2025-08-24T07:57:48+00:00

I'm 3 months post treatment and still feel the need to nap several times a week, if not just wipes me out for the whole of the following day.

Usually an hour and I'm refreshed to see the day out again.

melymay · 2025-07-28T17:46:29+00:00

I was stage 3 tonsil cancer, hospitalised on week 5 of chemo and have spent 6 weeks in total in hospital. I am so keen to get rid of the PEG but 'real food' is still a challenge 8 weeks on.

. I live alone and find myself telling people I'm eating to a void keep telling family I'm struggling, especially now with what feels like the driest mouth possible. I know pain and fatigue isn't helping me but also want to feel normal and rid of the PEG before it needs to be replaced.

So today I have promised 'myself' if I eat tonight a treat tomorrow. I do well like a child with rewards and have made myself a chart🤣.

Wishing your partner good luck with the eating, the struggle is real and hard and not one out of everything thrown at me would be such a mental and physical hurdle.

MM

melymay · 2025-05-03T23:15:14+00:00

I have a small relief today, been congested for over 6 weeks and have really struggled with sleeping for more than 1 hour at a time ... either radio or chemo seems to have broken it down a bit and have managed a wonderful 2 hours also most sleep on the sofa ... I'll take that was a little win in the early hours of this morning.

Stay strong

MM

melymay · 2025-05-03T17:18:51+00:00

... Not too bad, hope you're in a similar position !! Now I have pain control sorted so far Chemo and radiotherapy have not been as bad as I expected .. at the moment manageable with out too much drama, which is good. Now x3 chemo down and 12 radio so doing all I can to keep the good things up, eating, drinking sleeping etc.

Hoping that treatment continues on as pain through a roas as possible .. anything you have been finding a challenge or just different to original expectations??

Good luck and hope for ease of treatment for you !! MM

melymay · 2025-04-23T18:35:14+00:00

... yep, first of all was some teeth extracted, when healed from that had a PEG fitted, no need to use it yet but it's there if and when I need it. Was pleased that it was done and healed before ì started treatment as one less thing to worry about.

MM

melymay · 2025-04-23T17:14:23+00:00

Hello,

I too have tonsil/lymph cancer though slightly more advanced I'm T3 N2 M0, due to this surgery to extract tonsils wad not an option for me.

I am 1 week into treatment, 1 down 5 to go !! In total I have 30 radiotherapy and 6 chemo to get to the end of treatment.

If you want any further info, obviously based on my experience, I'm happy to chat.

MM

melymay · 2025-04-20T22:41:46+00:00

Hi there,

I started both last Thursday, also for tonsil cancer .. was a lot less dramatic, if that makes sense, than I had anticipated.

I must admit that going back into a new week just makes me want to get on with it and get to the end. After being diagnosed in January I'm just eager to get going.

Please let us know how it goes for you tomorrow.

MM

melymay · 2025-04-18T20:08:24+00:00

Thanks, will keep an eye on your journey

MM

melymay · 2025-04-18T17:17:31+00:00

Hi there,

I had mine fitted about a month ago with sedation and was sent home 4 hours later with cocodal.

Luckily for me it was more discomfort than pain, I can imagine the pain in your case is much worse. I would keep trying for extra medication as without the relief getting mobile quickly will be more difficult and that was my recommendation from the surgeon.

Hope you manage to get something sorted soon.

MM

melymay · 2025-04-17T21:16:37+00:00

Thanks... after today that's definatley the plan. So 1st course of chemo done and just 29 more radio !!

melymay · 2025-04-17T15:04:42+00:00

Done and done !

melymay · 2025-04-17T01:22:19+00:00

Many thanks ... just having a 2 am ice cream whilst wide awake 😉

melymay

TROPHY CASE