Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Mask sorted

seeker1
Posted by

As far as I remember they do the canula almost straight away. Then you have to wait hours and hours till they bring the chemo, It doesnt take more than a few hours. Although they know you have to go later for radiation they dont make it  quicker. And also you sometimes have to see a doctor after the radiation. I believe most people have had a long long day and dont bother anymore 

RadioactiveRaz
Posted by

Hi Martin

thank you for kind words. We are all in this together so only too pleased to help any one out. 

The routine for chemotherapy if like me yiu are having 2 or 3 equates to a long days .

think I’ve told you mine but will put on for general info 

report to hospital 0830 ish

choose your chemo chair bloods will have been taken a few days before just to check your magnesium levels etc 

the cannula inserted full bag of saline plus steroids to go in took anything uo to 3 hours , frequent loo trips then lunch is delivered week one is ok food wise I had full 3 courses took I pad in sent hubby home got my book our then around d 1300 the chemo went in that gain took 2 hours or maybe a but longer more loo trips them more saline during the last saline it’s  a trio down to radiotherapy pushing the drip along as you go not make sire yiu go to loo before reporting to reception before radiotherapy. Word of warning on first session your mask may feel tight that’s due to all the saline .hubby had come back k by this time and helped me down to basement where radiotherapy is to basically carry all my paraphernalia. 

 Then back up to chemo ward by now it was around 6 pm most of other patients had gone as other cancers their chemo there quicker or more frequent.likewise take something for a snack as food onky at lunchtime.on day one it was  2000 and I was last to leave. Back for radiotherapy at 0830 although when we git home I had lamb stew and dumplings. If people are having 5/6 chemos obviously their treatment time will be less. 

On my 2 nd chemotherapy I could tell I was in mid treatment as in a word wasn’t exactly a walk in park food wise and also in a Way mood wise hubby stayed with me all day 

.hope this helps Hazel

RadioactiveRaz 

1576
Posted by

Hi Bluebird,

I'll backtrack a little to give you a fuller picture. My wife is 48 and before all this started was very fit which has helped a lot with all the treatment and her initial surgery.

She was diagnosed with an Adenocarcinoma in the floor of her mouth. That was removed along with 22 lymph nodes from the same side with a forearm free flap used to plug the hole in her mouth. She also had the rather gruesome mandibulotomy which I'm glad we didn't really know about until the night before, it was initially described as a small split in the lip. Operation took 9 hours in total. She was out 7 days after the operation!

We live in Southampton so have a fantastic hospital on our doorstep and have to say we have been looked after by some very clever people.

We then moved onto the oncology dept and met her consultant Dr Ram, he has been in the news very recently with the pioneering treatment of radiotherapy during head and neck surgery.

Treatment is 6 weeks of radiotherapy and once a week Cisplatin chemotherapy. Mask fitting was okay, here they use the solid plastic sheets not the mesh but it has eye and mouth holes cut in it. It now has various other holes in it that have been cut to relieve pressure. 4 weeks in and she just breezes in to treatment and back out again so I think you definitely get used to it as time progresses. One thing she does to help is to pick a subject (countries, airports, airlines etc) and work from A-Z thinking of answers.

Side effects, as everyone will tell you nothing for 2 weeks. Slowly her throat has become more sore and she also suffers from the thicker and excess saliva all of which she could cope with. I have never seen so many drugs in my life but they trow everything at you. Paracetamol, co-codamol and morphine for pain, aspirin to be used as a mouthwash, various things for oral thrush, anti sickness for the chemo which hasn't been a problem at all.

In Southampton hospital they will have most head and neck patients fitted with a nasal feeding tube at the beginning of week 3. This was the one thing she really didn't want to have and at our meeting with the dietician midway thru the 2nd week we decided we could delay it a week as she was still eating okay. That turned out to be a mistake as by the time we saw them a week later she had a massive ulcer on her tongue which made eating impossible plus the throat pain had kicked in a bit more which made swallowing difficult. It was a difficult week as trying to get the calories in via fortisips was difficult and of course it's so important to keep the mask tight. We also had a product called scandishake that you mix with 240ml of whole milk and it's a massive 580kcal. As it turns out using the tube and pump has made life easier and it will be coming out as soon as she can start eating which she will force herself to do asap.

So, from our perspective at the end of week 4 I don't think things are too bad. Hopefully my view of it all as not the patient will give you some form of ease that it is totally achievable and as countless other people have you will get to the other side quicker than you think even if it doesn't seem like it at the moment.

Cheers Jake

Beesuit
Posted by

I can’t agree more about pump feeding. 

When I was at my lowest I couldn’t be bothered with regular daily feeding so I had my food overnight by pump. It was a godsend.  Nasogastric tube for me too. 

Bluebird6
Posted by

Hi Jake

thank you for sharing that, it certainly sounds like your wife is being very resilient having gone through all of that.

Really interesting re the sudden arrival of the side effects and sudden need for alternative feeding methods. I’m really hoping we get through the first couple of weeks without too much effect. And thanks fir the shake tip, I’m going to write that one down.It’s helpful to know as neither of us are keen on my husband having the peg inserted, this is happening on Wednesday next week, but it sounds as if we may be grateful for it down the line. 

Great that you are in such a good hospital and have such a positive view in it all , I wish you all the best for the rest of the treatment and will keep a look out for your posts to see how things are going for your wife.

best Wishes 

Lesley 

RadioactiveRaz
Posted by

Hi Jake I am now 10 month post radiotherapy for tonsil cancer  with affected lymph nodes I too had nasal feeding tube fitted fitted week 3/4 and taken out week 3, post radiotherapy I had s total of 2 tubes fitted and it was a godsend   As hubby used to put herbal tea in it snd all my medicines to be honest it was s lifesaver as eating and drinking was hard. Even plain water hurt it wasn’t wet which sounds strange. 

I have a blog detailing my exteith links to others if you want to read 

www.radioactiveraz,wordpress.com

good luck 

Hazel 

RadioactiveRaz 

Bluebird6
Posted by

Thank you, it’s good to hear how important it is as it feels like a big step for him at the minute.

L

Bluebird6
Posted by

Thank you.

L

AnnaLJ
Posted by

I had my first chemo during the night on Tuesday/Wednesday ...as you say you are in hospital a while..I was on the drip for 16 hours in total..only 3 of those were the actual chemo drugs..the others fluids and anti sickness drugs and steroids...very sick the day after but Thursday Friday much improved to today where I’m brilliant...so the first weeks down..radio and chemotherapy...

Anna......