Hi JJinks

T2N1M0 Tonsil cancer HPV16+ 

Certainly a harrowing experience for patients and carers 

I finished chemoradio June 2023, it can be quite harsh but not all suffer badly... some people will get less side effects than others.

Treatment outcomes are good, circa 90% cure rate for HPV16+

Was your partner offered a PEG feeding tube?

Peter 

Hi and welcome from me.  I often think the loved ones of patients suffer worse than the actual patient.  Their suffering is different, but just as real.  Take time to look after yourself so you can look after your partner.

There is no getting away from it that the treatment is brutal.  BUT the cure rate is very high and the quality of life post recovery is generally very good.  Expect to take a year out of your lives to gain many more great years together.

Once you have a treatment plan in full swing things will become easier as you have a routine to follow.  Your team at the hospital will be fantastic.  If you have a Maggie's or a Macmillan centre at the hospital go and make friends with them.  They are there as much to support you as they are your partner.  My wife found great comfort from Maggie's whilst I was in treatment.

Try to take this time to prepare for the next 6 months.  Doing that will help fill the time and slow your mind down and focus you both on the essentials.  If you need advice please shout out as sometimes the search function does not always provide the right information.

Stay with us and we will all help you both through this.

Hi JJinks

This is a difficult time for you and your partner but you are not alone and this forum will be a real support for you both.

I have found that it has been so helpful being able to talk to people who have been in a similar situation and I have had such good advice and support.

As Peter has said do make sure you look after yourself as well so you can best give your partner the support he needs.

My husband was given the advice not to over help me and go into full carer mode but to ask me if I needed help in any given situation. He was a tower of strength to me and had to take over so much of what I normally would do around the house. I was able to drive myself to most of my radiotherapy sessions but needed help in the latter stages of treatment.

It is not an easy gig but you will both get through it by supporting each other. I know I was a bit up and down with my moods for a while feeling angry, anxious, stressed, depressed so I'm afraid the poor partner has to contend with that but it does pass. 

I am now fully recovered and back to enjoying my life and you will both get there too.

Sending best wishes to you both.

Lyn

Hi welcome from me. I’m 6 years post treatment there will be light at end of dark tunnel takes time to get there. Best advise my husband can give you is make some time for you if only coffee with a friend or doing something outside. It’s an intense period and the patient also needs a little down time as well. 
any questions just ask 

Hazel xx

Hi JJinks,

I’m in a similar position as your partner. Had radical parotidectomy and neck resection in June, and awaiting radiotherapy in August.  I have spoken to a few people who have gone through the same treatment, some eventually had difficulty in swallowing and dry mouth etc, but some had no particular problem. Depending on the type and stage of cancer the radiotherapy seems to give very good results. I suppose the support we may need is to make sure we get help if we suffer side effects, and keep the goal of cure/ remission in mind. 

As others have said, take time to look after yourself as a carer, given the stress you have to face, and think of that better future hopefully not far away. My wife says meditation has helped her, and it helped me too.

Wishing you all the best.

Jacques

No he wasn’t , and just hope he doesn’t loose too much weight …

thanks for ur reply Peter and wishing u well x

Thanks Jacques , your story sounds very similar .. my partner is awaiting radiotherapy at Bath hospital August 26 - 4 Oct 

whereabout r u and your wife ? 
wishing you well x

jenny 

Hi Jenny,

We are in Sunderland,  but my radiotherapy will be in Newcastle. I was scheduled to start on 19th August, but they now think some cancer may have reached my ear canal. They  are re- planning my treatment to target the ear canal too, so I expect to start in about two weeks.

The nurse tells me they check with you every week to see if you have any side effects/ pain and advise how best to manage them. Each patient reacts differently, but they say the first two weeks are OK, then you may start to feel any side effects gradually getting worse. 

Hope your partner is one of the lucky ones that escape the worst side effects!

Let us know how it goes. 

Good luck,

Jacques.

Yes I will keep In touch and let u know how Andy my partners treatment goes .   He had a tooth out last week wit’s four stitches and even the jaw bone was drilled into to get the tooth extracted.  This  set him back again just as he was recovering from the big surgery July 18th.  He’s suffered so much ongoing pain it’s worn us both down …  

However today he feels less pain and turning a corner .. 

Hi Jenny,

I had the same operation 3 weeks before your partner and I still have to sleep on raised pillows, though the oedema is getting less marked.  I found the paracetamol full dose was mostly adequate for the pain, but your partner shouldn’t hesitate to ask for something stronger than what he is on  if he is still suffering. Anti-inflammatory drugs can help with the swelling and can have a longer pain relief action, which I find helps at night.

I used to wake up every 2 hours with dry mouth symptoms, despite Oralieve mouth gel. The nurse told me that sleeping with your mouth open makes it worse, so I taped mine almost closed with micropore 3M tape, and that did help!

I also wasn’t getting to sleep easily, morbid thoughts etc., so asked the GP for sleeping tablets and that helped too.

I think the lesson is not to suffer in silence, but ask for help early on.  The radiology nurses are particularly experienced I’m told.