New to the forum

HivSandyD57e4d8 I'm sorry about your husbands diagnosis. If you scroll through the different forums and join the one for throat cancer you will be able to speak to people going through the same who would be able to answer your questions. There are also forums for family etc for support. Sending hugs. Xx

Hi SandyD57e4d8 and a warm welcome to the Macmillan Community but so sorry to hear about your husband’s diagnosis.

The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend you look to join and post in our…….

Head and neck cancer

……. support group.

This group is a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same support journey.

Gosh I empathize!  I was diagnosed with throat cancer (hypopharynx squamous cell carcinoma HSCC) in Nov 2024 and started combined chemo and radiation therapies at the end of Dec 2024.  The treatment was very, very challenging and the side effects became progressively worse as time went on persisting and peaking well after actual treatment ended.  It is a tough time for everyone involved, the patient, carers and family.  Unfortunately, as far as I know, you just have to push on through and you will get through it.   A few notes from my personal experience that may or may not help.

1.

I was given OxyContin and warned it could/would cause constipation.  For quite a few weeks I continued to poo almost normally (or so I thought) but what I did not know was that there was a mass of unexpelled faecal matter quietly building up inside me.  Eventually going to the toilet became excruciatingly painful and then I could not poo at all.  I ended up as an emergency admission into hospital for an enema but once my bowels were cleared I felt so much better.  For weeks this slow motion, insidious constipation had been affecting my mood, ability eat, drink, everything.  I did not realise how much the constipation had been affecting me until after the enema.  So the message I want to pass on (forgive the pun) is do not neglect bowel movements.  Take Movicol three times a day religiously even if you think you are going OK.  Make sure to ask yourself if everything going in is coming out on time, be pre-emptive and proactive.  That constipation episode affected me negatively in so many ways.  It was horrible.  Keep those bowels moving!

2.

Do everything you can to avoid losing weight.

This is going to be a struggle.  Face it.  I got to a point where I could not, would not, eat and lost well over 20kg in a very short space of time.  As any clinician will tell you, your ability to maintain weight is a positive indicator of clinical outcomes.  This is both a psychological and physical battle.  There was pain associated with eating, swallowing; get help.  There are psychological factors.  I think I really got to understand how people with eating disorders feel.  The thought of food repulsed me; I didn’t want to eat.  It was a real psychological battle to get myself back to wanting to eat.  Be prepared, this thing is not only going to mess with your body, but also your head.  For me eating got progressively harder, took longer and eventually beacme too hard.  First I could not taste food, then it tated bad, then everything tasted disgusting.  It was a very difficult time.  You just have to persevere.  Eventually is gets better.

3.

Doggy bags. Not sick bags.

Oh thank goodness for the humble doggy bag!  Not the Ameican kind you take food home in; the kind you find hung up in the park for people to use to pick up after their dogs.  Here in Australia I found the ones that you could buy at the supermarket had a horrible smell (not nice when you have to stick your face into it 100 times a day).  The best ones are provide free by the council and are a better, more descreet and free alternative to sick bags.  We found a plastic container of the right size and lined the container with a doggy bag and I kept it by my bed / chair to hawk into.  I would then tie it up and chuck it in the bin.  I kept them in my pocket so that if I was outside I could (as discreetly as possible) quickly get one out and hawk tua into it.  Tip: I have not suffered any accidents but double bagging may be appropriate if you are not sure of the integrity of your bags.  I double bagged for weeks before I was confident enough in the council’s product.  J

4.

A quiet place.

This may not be possible depending on your personal circumstances but if it is possible, it can help a lot.

Creating a quiet space away from others and preferably near to a toilet and sink can make a world of difference.  In our case my wife moved into the spare bedroom; I stayed in the master bedroom with the en-suite; we put a reclining chair in “my” room as I spent weeks not being able to sleep lying down (well actually weeks barely sleeping at all).  Apart from anything else, this is a practical solution.   I was constantly up and down at night, coughing and spitting; unable to sleep for more than an hour at a time; constantly having to rinse my mouth out, nebulize, go to the toilet, pace around.  Not only would it have been almost impossible for anyone else in the same room to get any sleep, it would also have been dangerous as I would have been stumbling over someone else in the dark.  I suggest you do whatever you can do to make a ‘recovery space’ for the patient.  They will need it as will the carers too.

On a related note the combined chemo and radiation treatments I had resulted in a wide range of side effects, some of which challenged  my self esteem and my carers tolerance for yeucky, icky grossness.  The mucusitis is one aspect, the constant hawking, coughing, spitting and so on is enough to challenge anyone but it is not the only thing.  There may be periods of incontinence, vomiting and other hard-to-face side effects so having a private space for the patient to deal with these things is a huge help.  Have you read Fungus the Bogeyman?  Embrace your inner Fungus, the coughing, the dripping nose ……. It will be you for a while, recovery is a long and winding road.

5.

Can’t talk…. Get a tablet.  There probably will be times when you cannot talk.  Sometimes I just lost my voice; sometimes a sore throat prevented me from talking.  In any case I have been through several bouts of not being able to talk.  My preferred solution is a simple re-writable tablet that I paid AUD$15.00 for but of course you could use any tablet with a stylus.  I like these because they are cheap, tough and I don’t have to ‘worry’ about damaging or losing it.  There are also text to speech aps for phones and many other solutions so whatever works for you.  Just be prepared, losing your voice or not being able to speak because of pain or other factors is something that is probably going to happen.  There are ways around it. 

Something I found frustrating was that people close to me often wanted to talk for me, but did not say what I wanted to say!  Try and be understanding and patient.  I learned to put my hand in the air like a school child and shake my head before I used sign language to slow things down and get my tablet out.

6.

Practice swallowing, exercise your mouth.  I wish I had seen an instructional video (recently found by my lovely wife) before I started treatment.  In the end I developed my own exercises without really knowing what I was doing but after seeing this realised now how much more and better I could have be doing. 

7.

Rinse, repeat.  Ad infinitum.

Oral care is critically important and you will of course have to develop your own routine, but here is mine:

On waking.

Do not try and open mouth.  Head to the bathroom and rinse mouth with warm water bi-carb solution.  (one teaspoonful of bicarbonate of soda throroughly disolved in one cup of water, but find your optimum solution).   Gently ease a few drops into the mouth first; swill around and spit out.  As the mucus softens open your mouth more and sluice more. Do this for 4 or 5 rinses before gargling with the same solution.  Finish with a rinse of warm water and wait.  You are soon probably soon going to cough up some fairly significant phegm and mucous.

Rinse mouth with bicarb solution as often as possible.  4, 6, 10 times a day…. It does not matter.  Always after food or drink!

Brush teeth at least twice a day (after breakfast and before bed).  My toothbrushing method:

Start by rinsing with bi-carb solution.

Next I use a little Xylocaine Viscous (prescription only) with Oral 7 mouth mouthwash and swill it around my mouth and gargle.  This numbs my mouth temporarily and enables me to clean my teeth despite my sore gums etc.

Use an Oraswab (with bicarb) to swab and clean gums (inside outside), under tongue, roof of mouth.

Brush teeth with Oral 7 toothpaste.

Floss

Use an interdental brush to get in beteen tooth spaces etc.

Rinse with bicarb solution.

Rinse and gargle with Oral 7 mouthwash, use Oral 7 mouth spray.

Phew!  Thank goodness that is over for another day.

8.

Time becomes warped.

When I was going through chemo and radiation therapy time just warped into one continuous stream of unpleasant and discomfiting experiences.  Even now, seven months after I started treatment (and I am fully mobile, with a good general quality of life) time is warped by my need to feed.  I cannot eat solids (again!) so am on supplement drinks…. I need 7 a day…. It can take me up to an hour ot drink one…… do the math……it takes me over 30 mins to brush my teeth….. another 30 mins in the morning to getmy mouth working…..basic self care is a full time job.

9.

QV Cream.  Slather it on and on and on and on.

Especially during radiation therapy (being careful to follow the instructions about when not to of course).  But apart from when use is embargoed, apply liberally and as frequently as possible.  Twice a day during rad?  Not enough.  Three timese?  Not enough.

10.

Hydrate mate!

However much you think you are hydrating, sip a bit more.  Despite drinking as much water as I could I was still considered clinically dehydrated.  Where the water goes, nobody knows.  Just drink a little more and be happy.

11.

Give it a rest.

My afternoon naps were essential during treatment and I still need them.  You will be tired, get rest when you can.  It probably will not be at night.

12.

Walk it off.  Exercise as much as you can.

As anyone who knows will tell you, exercise is vitally important.  You will probably have many days like me when it is impossible so whenever you can, exercise in any way you can.  Walking is good (at least 3 or 4 K per day) but also needs to be suplemented with other exercises.  I use and Bullworker.

13.

Care for your carers and yourself.

I don’t pretend to have done this particularly well but it important to understand the theory as well as the practice.  Whatever you are going through, your carer and family are also experiencing vicariously.  Sometimes they will not understand you and it all breaks down.  Sometimes your OxyContin muddled, constipated, mucus laden mind will lead you astray.  Reflect, rewind, reset and move on.  Respect the situation you are in and how ill you are; how hard the treatment is and be grateful and say thanks for everything and everyone you have around you.

Phew…. That was longer than I expected and I still have not scratched the surface of what I want to say.

Thank you so much for responding and for sharing all the tips and advice. They are all really helpful. We are just heading into week 4 and so those tips are really good to know. I hope that you are starting to feel stronger and on the road to recovery.