Husband due to have surgery, rt & chemotherapy.

Hi Wifey 2805, welcome to the group. The first thing I will say is please don't look on Google, it is mostly nonsense and at best way out of date and will scare the life out of you. The chemo and the RT are the standard treatment, after surgery, it is normally over 6 weeks, RT every day, and chemo is usually, 1 each week or 2 over the 6 weeks. There's no getting away from the fact that the treatment is no walk in the park and comes with many side-effects (which he will be given medication for as he goes along) it is important to let his team know about his side-effects, so they can help. He may be offered a feeding tube, either a RIG or a PEG, I would strongly, advise him to have it if offered, they are a lifesaver if eating becomes difficult during and after treatment. It all sounds very daunting, I know, however the treatment is very effective and gives very high cure rates, many of us on here have had the same and are here to tell the tale.  We are all here to help, so any worries or questions you have, just ask, someone will always answer if they can. All the best to you both.

Regards Ray.

Hi Wifey2805 

Welcome from me too

Ray has covered the basics

The treatment is challenging but doable. It's a day at a time. I would work on being back at work part time at six months, maybe earlier if he can work from home, later if his job is physical.

I was 67 when I started treatment and I'm now only a few months away from my five years, living pretty well.

My husband took over the cooking, running the house and made sure I took my meds. I fed over night by pump via a nasogastric tube from week five for a few weeks so he set up the pump for me. Other than nagging me to take my meds on time and giving me hugs/ kick up the proverbial when appropriate I managed with no actual care.

I'll echo Ray's advice to not resist a stomach tube if offered. It will make life much easier to not have to fight to keep nourished. Proper nutrition makes recovery better and quicker.

Questions will come as and when so don't hesitate. There is always somebody here to help

Take pen and paper into consults or record them on your phone so that you don't forget things. If you don't understand something make sure it's explained to you till you do. Whenever you think of a question, write it down and take a list with you.

Your husbands CNS should be contactable between consultant appointments so make sure you have their number

Good luck

Thanks Ray.

Will the treatment affect movement of his neck?  He has a motorbike - his favourite hobby & he’s worried about getting the helmet on & movement after RT.

Does the surgery affect the voice? His second favourite hobby is singing.

Hes more worried about the long term affects of treatment.

Im more worried about the actual treatment and how ill he might become.  I spent most of the night reading posts & blogs on here which have given me lots of information.  A wonderful group!

Wifey2805 said:

Will the treatment affect movement of his neck?  He has a motorbike - his favourite hobby & he’s worried about getting the helmet on & movement after RT.

I can only speak for RT and the answer is no. 
These are all questions for his team once you know the extent of his surgery. For example if he is going to have a neck dissection which might well make a difference 

Dani,

Thanks for the great advice.

 I’ll have pen & paper at the ready for the pre op today.

His work is very physical. He’s an HGV mechanic & repairs bin wagons of all things. He’s hoping to have light duties during treatment- but I’m not certain he will be able to go anywhere near a germ infested bin truck for quite some time.?  And during treatment it doesn’t sound like he will be capable of anything other than concentrating on getting well.

Do I break this news to him or do I leave him in the dark about what’s ahead?  He really has no clue what’s ahead of him for the next 6 months.  

Will the CNS discuss his treatments with me? I thought that was just for the patient.?

Im also worried about myself- Dave has looked after me due to painful physical chronic illness as well as mental health problems….. I now need to somehow care for both of us.  I know I’ll do it, but how do I do it without exhaustion kicking in.

There’s just so much to consider.

Up until recently, I had been a biker, since I was old enough to have a bike, so I can see his worry, I 'd say after his treatment and recovery he will be fine to ride his bike, with no worries at all. As for voice I lost mine for a while, but it did come back, just as before.

Old Biker.

Thank you. That’s really reassuring.

Hi and welcome from me.  Sorry your here but there are plenty of people with experience to help you and your husband through all aspects of your journey together.

Your husband sounds a bit like me in terms of presentation.  It is almost 4 years to the day since I went to the GP with a lump in my neck.  My FNA biopsy was clear but they fortunately suggested removing the enlarged lymph node which proved to be SCC HPV+.  PET scan was inconclusive but indicated either tonsils, base of tongue or back of nasal passage.  I had my tonsils removed and biopsies of the tongue but nothing was found.  Later on I had all the right hand neck lymph nodes removed - again nothing.  It is not common, but neither unusual for the cancer primary to be unknown (CUP).  A year later they found a tiny tumour in my tongue, but it went a few weeks later.  They think my immune system is on steroids and dealing with the cancer naturally!

I did not have RT or chemo.  After all that surgery (I think I am up to 6 operations now) I find I can do most anything I want to.  I can take around 18 months to settle down to the new normal.  There are some limitations but nothing that stops me enjoying a great quality of life sailing and travelling.

As to tiredness, well I think that is par for the course.  At this stage stress is probably causing most of that, but during and after treatment it may get worse.  Tell him to listen to his body.  Push it to do exercise, but when it tells him he needs to rest, then take that rest.

Good luck and let us know how things progress.

Hi has others hsve said keep  iff dr google stick with us on here. It’s not totally unusual for head and neck cancers not ti present with a primary.You’ll know more after pet cr scan. I had 7 lymph nodes  affected snd my cancer was hidden in my tonsillar crypt. But here I am 5 years later happily living my life Treatments hard but I was 61 and u did uf. My blogs below it might help. Any questions just ask. 
yes he will feel tired even if he’s ignoring it it’s there at the back of your his mind all the time. Once treatment starts everything falls into place. After biopsy you will find out his HPV status. HPV positive tumours respond well to treatment it’s nothing to fear 
Hazel x

Hi Wifey2805, you're very welcome, but sorry you had to join us here.

If you press on the little armchair by my name you will be able to read my profile where I have documented my journey with SCC R base of tongue & lymph nodes. I didn't have surgery so I can't speak to that. 

In answer to your question re care (with your conditions) he is unlikely to be discharged from hospital with any tubes remaining that would require any care. During Chemo, Chemoradiation my husband acquired a recliner chair for me & set me up in the living room. He also acquired a shower chair & secured it. The only other input I required was some drivers to take me to treatment (6 wks) so the burden didn't fall on my husband everyday. And someone to pick up medication from pharmacy. I managed my own food tube and feeding and did up my own medication chart. 

Reading others experiences on the FB page Young Tongues it seems that the first days after surgery are rough & with a tracheostomy the patient isn't able to speak - so some sort of white board, blackboard or speech app is a good idea. 

Wishing you both all the very best

Tina