Newly diagnosed husband

gailywaily 62 said:

Thank you Dani your blog was one of the first ones I read on here. So much help and Inspiration. I am definitely going to hold on the first paragraph of your reply.

I’m so pleased it has helped a little. 
I’m nearly at my five year anniversary. There is a good life to be had. We will all help you both find that. 

Hi. I’m 21 months post treatment for tonsil & lymph node hpv 16+
I had a bilateral tonsillectomy & part of tongue removed. Then a PEG fitted before starting 6 weeks of treatment. This consisted of 6x chemo (every Monday) plus 30x radio every weekday. By week 3 I could no longer swallow anything apart from sips of water. I used a small pump & my PEG to feed overnight from week 3. Overall I lost about a stone & a half. I had deliberately put half a stone on prior to treatment. During treatment I progressed from paracetamol, then added in codeine , then morphine. Recovery took many months. When the consultants talk in terms of a couple of weeks or so - don’t believe them. My husband looked after me, drove me to & from hospital, coped with our dogs & teenagers. He continued to work from home at the same time. I had 9 months off work (teacher) & went back at about 6 months post. Definitely go away on holiday. I use ‘insurewith’. 
Macmillan offer counselling should your husband need it at any point. I had 6 free sessions during recovery & it was a massive help. 
If he is offered  a feeding tube then tell him to have it. Mine saved my life. 
Stick with this forum. We are all here to help. 

Hi

I had diagnosis of base of tongue tonsil due to HPV virus . A lump suddenly appeared on the left side of my neck after ultra sound biopsy and PET scan they found the primary.

I had robotic surgery and did not need radio or chemotherapy after the operation. I also had a neck dissection and lymph nodes removed.

That wasn’t as scary as I thought it would be, and I can hardly see the scar now 

Joining this support group was the best thing I ever did, I was terrified, but the help and support I received got me through the operation and recovery. Just entering my third year and things have really improved.

I can now eat normally, taste is improving, neck feels okay.

I can’t advise if a feeding tube is needed as I didn’t have one, luckily I was able to manage with liquids and soft food. There are some good people on here who can give you advise

Im now back to competing in triathlons and marathons .

It was less scary having this forum to turn to 

Thank you for your reply. I relay lots of the replys to my hubby as he can cope with that. Definitely will go ahead with feeding  tube if it's offered. ️

Thanks Debbie great to hear about different treatment options and experiences. Definitely helps to ease our worries. I will.posr again as soon as we see the consultant x

Hi Hazel

Advising insurance company 

After chemo and radiotherapy recovery we were organising a break to the Canaries (my wife had certainly earned it for putting up with my moans) the policy we had in place with Makesure refused to cover me. (AF appeared during chemo) as did a good few others.... finally got a years cover from PayingTooMuch.com at reasonable price.

Things are not made easy for us.

Peter 

Hi Peter. I use staysure at the moment they cover me for an extra payment if one trip  60 days and 2nd trip 100 days ( we can’t stay that long due to Brexit we stay around 70 days in 2 nd trip ) my cancer always been covered. We are on our  own place snd I know if I needed I would or could get home  in hours if need be. The insurance is there as I was a travel agent and wouldn’t travel personally without it we do have  valid GH1C cards. 
Even now at  over 5  years I have to declare plus  for next 2 years I’ve seen the consultant even though no thing  untoward has happened over the previous 5 years. It’s the price we have to pay to travel sadly. 
We have a yearly policy due for renewal next month so watch this space. 

Hazel x

Hi Gailywaily, I would just echo the comments already made by others which will, hopefully, provide some reassurance to your husband. Once he has had his appointment and treatment regime defined you will have a better understanding of what to expect and how you will be able to support him as his treatment progresses.

 It will be tough but doable and in the meantime enjoy your holiday.

- John

Hello Gailywaily, glad you found this group. The waiting is the worst I think - once treatment starts you know where you are and just get through it. I had similar cancer, treated with 6 weeks chemo & radiation, no surgery. It was tough but I'm all clear now. My partner was an absolute star throughout. Definitely go on holiday and treat yourselves before treatment starts. I had an annual policy with Staysure, had to pay a bit extra after diagnosis.

Wishing you both well

Catriona

Hi Rachel,

I noticed on your post you are at the same stage as me post treatment and have had same amount of treatment aswell.Can I ask you are you still taking painkillers every day ? My nurse has suggested today that I cut back on the oramorph by 10mls per day and keep with 80mls liquid paracetamol ? I have left tonsil c with local advancement and one lymph node involved.Hope you don't mind me asking.

Thanks,

Turi