Treatment

Hi Ash. We are all different in the way we react. 
You might find this thread useful 

https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum/f/diagnosis-and-treatment/287136/helpful-tips-for-those-about-to-start-treatment

I didn’t have chemo just RT

By the end of week three my mouth and throat was full of ulcers  and I was dependant on my Nasogastric tube for food and pain relief. 

Hi Ash. Like Dani by end of week 3 start of week 4 I was ng tube fed. My trust didn’t routinely fit pegs but I consented to a, n g ( nasal feeding tube)for 6 weeks it was my lifesaver it allowed me to make  a good recovery.  I had ulcers from treatment snd was in opiates for 3 months then dud a slow withdrawal. Trust you team keep off dr google ask us on here. 
Best wishes 

Hazel x

1. Morning, so sorry to hear your diagnosis,but stay here on this platform,always helpful. I am a wife who's husband got diagnosed with a form of throat cancer.Also he's now 7mths post treatment, he suffered with some cruel side effect. By week 3, he could barely speak,swallowing food was nearly impossible, he had a PEG fitted aswell, pretty much everything had to go through there,medication (tablets crushed up or liquid kind), special kind of food, we got subscribed Ensures.His radiotherapy caused severe burns around his neck, which we got special dressing and cream for. He suffered with a a thick mucus, a spitbowl was always close by,with no spit being produced,he had a very dry mouth, always very dehydrated and being very fatigued and tired, he slept for most of the days, as night time was difficult. He lost a lot of weight.He received two rounds of Cisplatin,which where long days, as these took about 8hrs.He didn't really had any problems with those.We knew from the beginning that treatment and recovery was to be cruel, but we persevered and we pulled through. So my advise would be, listen to your medical team,stay positive and strong. It's going to be tough but it's doable. With support of family you will get there. All my best wishes. Fellow wife Mel .

I had a PEG tube in place for around 6 months, it was a life saver, from about week 3 eating food became a no-no, PEG had to be used during the day at first then graduated to pump fed overnight. It took a while to get the feed rate perfected, feeding too quickly caused nausea and reflux, trial and error. PEG insertion site maintenance is essential, keep the site sterile, stick to a daily cleaning regime, I used sterile pads between the buffer and the skin to stop chafing, pads were supplied by the oncology ward, still had a couple of site infections which required treatment with antibiotics.

Side effects vary from patient to patient, sore mouth and throat, nausea and vomiting, constipation, feeling low, oral thrush, loss of taste and appetite, raw neck on outer etc.

Constipation: make sure you take plenty of Laxido

Pain: make sure you always have plenty of pain meds, any pain issues should be discussed promptly with oncology, do not suffer in silence.

Thanks everyone for the responses and honesty. I really dont know how I am gonna make it through this it just feels like my worst nightmare every part of it from being fed through a tube burns ulcers fatigue then the stress its going to put on my wife and kids I feel like there is no way out

You will get through it, not easy but the alternative is unthinkable, 90 percent plus cure rate for HPV16 plus cancers, things will improve when the treatment finishes and recovery starts, not immediately after, it takes time to settle down.

Keep posting, this forum is an excellent source of support and comfort, all have experience of the treatment and its effects on patients, family and carers.

Good morning, I can feel for you. When we first got our diagnosis we felt the same,from being scared to being angry and everything in-between.Eventual we became to terms with it and  once we had a treatment plan, we new were we were going. What ever you are feeling now it's understandable. But remember, this one has a high curable rate,trust in that. Hope you have support at home, I do not wish on anyone having to do it on there own. All the best. Mel x

Ash2da3590 said:

Thanks everyone for the responses and honesty. I really dont know how I am gonna make it through this it just feels like my worst nightmare every part of it from being fed through a tube burns ulcers fatigue then the stress its going to put on my wife and kids I feel like there is no way out

Stop and breathe. 
information overload. 
Not everything happens at once so you come to terms with what is happening day by day. Do as your team tells you, don’t be brave. You get through it day by day and the prize at the end is life and a good one. 
Yes it will be stressful for your Mrs but turn it round. How would you cope if it was her who was ill? The answer is yes you would. 
There are quite a few carers in this group? Maybe she would join in. Sharing with others in the same boat might help enormously. 
Don’t despair. You’ll do it. Just stay with us 

Hello Ash,

I had a PEG (actually a RIG) fitted before my 7 weeks of radiotherapy with two doses of chemotherapy in weeks 1 & 4. You’ll have speech therapist (who will monitor the ability to swallow) as well as nutritionists keeping an eye on you and offering helpful suggestions. I personally found the foul taste in my mouth from week 3 put me off eating I was fortunate to not experIence much pain and did not use pain meds apart from Pregabalin in week 3 for about 7 days only. My swallow remained intact throughout treatment but even water tasted vile. I was offered a pump and asked for neutral flavoured supplements as I found the fruit flavours unpleasant. I found faster delivery via pump worked for me and a dose of metoclopramide after taking a concentrate helped it pass through the stomach quickly. I was prone to mechanical vomiting so this was a huge help in keeping the nutrition down. I would also suggest if you do find yourself going down this path ask the nutritionist for soluble fibre to help with preventing constipation Laxido did not suit me. I’ve been extremely fortunate in that 3 weeks post end of treatment I found the foul taste had gone and as I could swallow gentle foods such as melons was able to start eating and within weeks I was able to stop taking concentrates via the PEG and eat solid foods again. 
I had home visits from the PEG nurses throughout treatment who taught how to care for the PEG and did the weekly advance and rotates until I felt confident to take this on for myself. Cleaning it was simple and the daily 360 rotation was easy even though the idea of it seemed unpleasant to start with: again the PEG nurses will help you with this. 
I know it seems bleak right now but the NHS gave me so much support and you have everyone on this forum willing to offer the benefits of their experiences too. 
Everyone’s experience is different, hopefully you might have an easier time of it than most.

Best wishes, Simon