Thanks Tina,
That's rather reassuring on all counts.
last time, they weren't very good at passing on messages in either direction. This time, I'll pester them to see if it has been done.
Even though I couldn't speak, at least i was able to send her texts once I was alert enough.

As another aside, I was wondering if there are any physical manifestations of lymph involvement.
I've had what feels like a trapped nerve in my shoulder which has made it very uncomfortable to ride my bike all summer due to the pain shooting down my arm.
Is this likely to be completely unrelated, or has anyone else experienced the same and it has proved to be linked?
I've assumed it's unlinked and, as the pain is not sufficiently severe, I haven't reported it to medics.

HI again... well a neck dissection will cause a few issues... what tina said is true there is minimal pain as the nerve damage causes numbness. Hopefully they will get you in for this very soon. The sooner it is done the soon you can start treatment - and with poorly differentiated cancer i would think that maybe they will recommend it.

That said - because they cut your muscle in your neck you will need physical therapy for your neck, shoulder and arm, if you follow through with the exercises you will regain good use again. (if you have a bilateral dissection, then you will have to work on both arms) If you have radiation after the dissection it causes things to tighten up. SO you will need to stretch.

You will also have lymphedema (swelling in your face and neck region. Once treatment is all over and you've had a clear scan and a few check ups, you can try lymphatic massage. Since the lymph moves throughout your body, you don't want to be spreading it until you know you are clean.

You shouldn't be in the hospital too long. since this is a second surgery and the least extensive. So I would tell your wife to stay home, and if you can bring an ipad and or a computer or cell phone and email or text her frequently. ;o)

maybe that will help. I would also maybe print off some of the messages from here to help her realize she's not on her own. best of luck and tell them to get their butts moving on the dissection.

;o)

Gilb, I disagree. Let your Wife come with you.
Kris didn't want me to come initially. But remember, what happens to you happens to your wife too. It really does. Don't exclude her, that is extremely painful. She will worry more and honestly you will appreciate having her there to support and advocate for you.
To get through this you must be a team. Work together and support each other.
With respect to Cheryl and Tina, they are both the patient and not the Caregivers. Maybe that's why I see this so differently from them both.
In the beginning I often told Kris, " what happens to you , happens to me" .
I get how your Von is feeling.
If she would like to talk to me she can PM me, I am always here.
Tammy

Thanks Cheryl & Tammy,
As regards visiting, I really don't want her making that train journey. I'll have a word with the MacMillan Nurses and see if they have somewhere close to the hospital where she could stay.
The description of the effects of a neck dissection is a bit scary.
I always wanted to retire at 55, so I could have a good retirement - I'd heard too many stories of people working to 65 or 70, and dropping dead soon afterwards.
To that end, we have loads of holidays booked:
At the moment we're supposed to be in the Lake District for 4 weeks - we may get up there for a few days after these scans.
Then we have a 4 week cruise booked for the end of November, another one for February, and another one for next November.
We were also planning a 2-month US Road Trip for Aug 2015.
I'm thinking that, at the very least, we'll probably have to cancel our November cruise.
I'm wondering whether I should make the final payment on the February one at the end of October, and I'm even wondering if I'll be fit to do a long drive at the end of 2015 if my shoulders aren't going to be working.
Any ideas?

The neck dissection while sounding daunting actually isn't that bad. At least I didn't find it to be that way. I mean you look horrific for a week or so (depending on how they stitch you up - mine used hidden stitches, some have been given staples etc... you will have a few drains in for a day or two and then a dressing for a few more days. My surgery was 14 hours as they grafted my tongue and removed nodes. I was in the hospital for 10 days went home and ten days later I went to mexico for a week. Came back and got my pathology report, then a little less than three weeks later I was in radiation.

So if everything goes okay with your path, and they say no more treatment required that nov. trip could happen. If they say they want you to do further treatment, then chances are it is a 5 -6 week wait for healing then into treatment. That's a reasonable time line.

Now I said let your wife stay home, only because it would be a hardship for her traveling. Don't make her stay home - unless she wants too. If she is insistent in coming then that's okay as long as you can find a place for her to stay. Unless there are complications you will not be in for long 3-5 days? You will be a bit swollen, and definitely numb from the surgery, but you will be okay. You will likely have weakness in your arm on the operative side but you can start physio on that right away and to be honest, I was functional - able to dress and shower, etc.... good luck

Thanks Cheryl,
It's really good to have a proper idea of what to expect.
Although it's quite a lengthy process, it seems, as you say, not too horrendous.
I'm impressed that you coped so well, given the added complication of the tongue graft.

We've found a solution to the visiting problem:
It would have taken 3 hours and cost 30GBP each way on the train via London but we've discovered that, by taking 2 buses each way, she can be there in 2 hours, and it won't cost anything with her Senior bus pass.
Visiting is allowed from 2-8pm, but she would have to leave at 5pm for the last bus, and wouldn't be able to do it at weekends, but she is happy with that, and very relieved.

I rang my Macmillan Nurses contact yesterday, and got a better description of my treatment program, which was good.
Then I had a call from the hospital - I can have my MRI scan today - they've had a cancellation. I'll still have to go back for my CT scan, but c'est la vie.
As I understand it, the MRI scan is of the head and neck where they're most likely to find something and the CT scan is of the chest and abdomen where it's less likely, so I guess this is the most important one to have done quickly.
The nurse said that, unless they find enlarged lymph nodes today, they won't need to do a neck dissection. Does that sound right?
Do they ever open up the neck and have a physical look, or remove nodes from the upper levels and test them just as a precaution when a cancer is known to be aggressive?

I'm so thankful to have found OCF and all you wonderful people. You're such an inspiration

HUGS

P.S. It must have taken a dozen attempts to make this post before I finally discoved it didn't like the 'pound' sign.

Usually they will do a PET scan to look for lymph node involvement (this measures the sugars that are given off by cancer cells replicating). The MRI looks at the structures that are in the area being scanned. The CT is often combined with the PET, so that may be how they are doing it.

Each doctor is different on the plan, but my PET came back positive, so they did the neck dissection, removed and tested a bunch of nodes, but all were negative for cancer. Because there is nerve and muscle damage (it takes a good long while to get that back), it's not usually something they will do to investigate, unless there's an indication of need.

Glad you worked out a system with your wife. It's always easier for a loved one to see how we are doing - it's much easier to lie by email or text, and she would likely have felt that you were downplaying how you were doing to protect her.

Hmmm,
Thanks for that nugget of information Tina.
As far as I recall, no-one has mentioned a PET-CT scan to me before, but I've just looked it up, and they do have such a scanner sat in a mobile unit outside my hospital, so I'll have a word with my nurse to see if they have one planned and, if not, why not.

Pet / ct are actually widely done in the states - Toronto not, so I think it depends on where you live. And MRI is quite definitive as well. Likely if they find no nodes they probably won't cut unless you ask them to and even then probably not. My dr. Is cautious after many years of treating this cancer. The minute he saw me he told me I'm removing the tumor and 40 nodes. Even though the ct showed no involvement. I showed him the node that had popped up before surgery the day of surgery - he said - doesn't matter it's coming out. if they do send you home and say no surgery just keep an eye on your neck for any unusual lumps, rashes etc... And go for a monthy follow up. best of luck on the scans

Hi again,
I had my MRI scan of the neck on Thursday, and my CT scan of the chest and abdomen is arranged for Tuesday. I think, if they both show negative, I'll ask for a PET/CT scan of the neck just to confirm there's no early activity that the MRI scan missed.

I was wondering; it's now 18 days since my laser surgery.
Is there anyone on here who had laser surgery close to the tip of the tongue, where the lateral nerve was severed as part of the margin, who can tell me whether or when I can expect the numbness of the tongue to go away, and be able to speak properly?