T4 non HPV head and neck cancer

Hi Debbie. Welcome to the Community

Deb11 said:

Is it normal to have these problems 17 weeks into recovery? 

Yes especially with the advanced stage and having to have large doses of chemotherapy plus a larger target for the RT.

Slowly slowly does it. I know it's frustrating but the body can heal only at its own pace. All you can do is make sure he gets as much good healthy food inside him as possible. Eating mushy food at 17 weeks after his ordeal is pretty remarkable. Hold onto the fact that all oropharyngeal cancer responds well to treatment and fingers crossed the results are good.

How are you feeling/ Are you managing to get out for a bit of me time; a bit of time when you can relax outside home and breathe some fresh air with a friend? I hope so.

All the best for the 19th.

Thankyou so much for your quick reply, it’s very much appreciated. Yes everything is crossed for the 19th.

me … well … I’m hanging in there. My husband unfortunately is very much like yourself (I’ve started reading your blog) and is a glass half full chap, at the moment I think it’s fair to say, the glass is almost empty.

His constant worrying is wearing us both down, which is why I reached out on here to read other peoples journeys and try and put some perspective on his recovery progress. I’m going to suggest he joins himself, I think it would really help him. 

Thanks once again. 

Deb11 said:

My husband unfortunately is very much like yourself (I’ve started reading your blog) and is a glass half full chap, at the moment I think it’s fair to say, the glass is almost empty.

Oh give him a hug from me. I have always made plans in my head for the worst case scenario but it's never ever happened. it's my nature but through all the rubbish of treatment (which is bad enough) what really brought me down was the waiting and uncertainty of it all. I kept it to myself. Don't worry about him. He may be running on empty but he will get there. By Christmas time he will be much more like his old self. Tell him from me that I know the glass half empty thing is self defence. 

Try not to let it get you down. Let him be miserable, he'll get over it. My husband is the polar opposite and he didn't let me play the cancer card for long. He looked after me while I was in treatment then gave me a good kick up the bum. I am forever grateful that he didn't let me stew in misery.

Hi Deb 

First of all well done to him that he managed to get through treatment ️and also to you for supporting him through this x

I was also diagnosed T4 right tonsil base of tongue plus activity in left tonsil and many lymph nodes(HPV+) . Had 2/3 overnight chemos plus 7 weeks high dose radiotherapy.I was very ill and spent nearly 5 weeks as inpatient had 3infections like your husband.

He sounds like he’s doing amazing ! I was months before I could even sip water ….. and still on a soft diet ( due to damage from radiotherapy. I still have only rancid taste so the fact he can taste  and mucous is better are all really great for his recovery .

Keep up with the oral care ,exercises from his Speech therapist and moisturise neck/chin area. Does he have any signs of a lymphodema ( swelling in lower face  chin neckcommon after treatment if so let team know asap and start manual drainage massage ( we can send /show him how to do it while he waits to see lymph Practioner).

The waiting is horrific but we are crossing our fingers for you both and sending our best hopes for the 19th x

Debbie 

PS I’m now 17mths post successful treatment for you both

Hi Debbie, thank you so much for taking the time to respond. They warn you that the treatment is brutal and although you think you’re prepared, in reality you really don’t have a clue do you.

Yes he has got lymphoedema and he has been sent some exercises to do which he has started.

He also has neuropathy which was extremely painful but has improved, we bought some implants for his shoes which have helped and now it’s just some numbness.

We struggle to keep the thrush at bay but we know the signs now so get on top of it before it can really take a hold, he’s got much better with his oral hygiene.

He’s also managing to maintain his weight which is a real achievement given we had to stop the Nutricia drinks early on as they contain so much sugar and really wasn’t helping the thrush fight. He did lose about 3 stone whilst he was in hospital but he was a big guy to start with, so actually trying to be positive when I can …. It’s done him a bit of a favour. Not that I would recommend this as a diet method to anybody. 

You sound like you’ve done amazingly well. 

Everything is crossed for the 19th

X

I’m too empathic for my own good … lol. At this rate he’ll outlive me.

Only joking, I’m trying to keep my sense of humour throughout all this.

I won’t let him stew and I will try to step away a bit for my own sanity !

PS … am I right in thinking you live in Wales. I seem to remember you mentioning Morristons  in your blog …. 

Yes in in Ceredigion near the coast. It made travel to treatment difficult but I got there and we live in beautiful surroundings 

Well what a coincidence, we live near Cardigan and yes the trips to Singleton, further but easier to park and Morriston (nightmare parking wise) took its toll.

Who is your oncologist?