Hi Gail,

I am so sorry to hear about your husband. I presume that he is about the same age as you? The diagnosis of cancer hits most of us like a runaway train and time seems to really drag whilst we await the results of tests, and then wait for treatment to start.

Once treatment starts we gradually come to accept it and somehow or other we feel better because we are actually doing something to try and prevent it from taking over our lives. It is always a scary time waiting for surgery. Time tends to drag. Try to keep yourselves busy with more pleasant things to help take your mind off what is happening – I know, you just cannot put it to the back of your minds, but keeping busy might help to pass the time a little quicker.

A cancer diagnosis affects all the family. Have you told your children yet and how have they reacted?

Many people find it cathartic to write down how they feel and you will find that there is good support on this site. Do let us know how the surgery goes, and I trust that the scan won’t find any more metastases.

All this must be particularly difficult for you. You will find that you have to be the strong one, both for your husband and for the children.

I pray that God gives you the strength you need.

Kind regards,

Jolamine xx

Gail

sorry to hear your news about your husband .... you must both be all over the place at the moment, with a 1000 questions and a lot of unknown

i was diagnosed with the same on 12:35 on 28/04/2014..... but I am now doing well

like your hubby my lump was a secondary and after many tests no primary was found ... it quite common

i have given you a link to by blog ... it explains how I got here

its a long read but you might find it informative

if you have any questions please shout, there are many of us who have been through this cancer, although this is rare

gammaraygary.wordpress.com/.../

keep us up to date with how things are going

vatch

Hi there Gail

And so sorry you like many of us find yourself here - in the club no-one wants to join. We like you had our world turned upside down in december 2015 when having visited the GP with what seemed an inoquous swollen gland in my husbands neck percipitated referral to the fast track head and neck cancer service. After a fine needle biopsy SCC was confirmed - metastatic in his neck lymph nodes and we started our cancer journey. His primary was found in his tonsils which were removed and we then started on the road to treatment. 

i have to say that this bit is the worst - the waiting to find where the primary is,the waiting for the treatment plan ,the waiting to start treatment so hang in there. It can seem like an eternity and I know that I kept thinking "he's got cancer surely things should be happening quicker" but in hindsight the waiting gave us a little time to process the diagnosis and what was happening. As Vatch says this affects everyone in the family in different ways and I found myself needing to talk about what was happening but I know others dont find it that easy. 

Just to say if you need to talk to another wife who has been there - (my husband often says that he feels it was much harder for me because he had support from the medical team and he was so engrossed in trying to get through each day himself that i was often forgotten and was left holding everything together for him and the family) - then feel free to PM me and Im happy to chat.

Good luck with the surgery and  the treatment plan

wishing you and youre husband loads of luck and positive thoughts

Emma

Hi gail

just thought I would drop you a line to see how things are going

vatch

Hi Vatch, I'm sorry I haven't replied sooner but I had some problems whenever I tried to reply to those like you that were kind d enough to answer my post. 

My hubby is doing ok, he starts a 6 week course of chemoradiation on the 1st of June, it'll be tough but we'll get through it. His primary cancer site is right at the back of his tongue so he didn't need to have his tonsils out. He may need some surgery at the end of his treatment to mop up (the docs words) the lymph nodes. We've told our family and close friends what's going to happen and they've been really supportive. Our kids (20&17) took it quite bad when we told them, they thought their dad was going to die and we had to do a lot of reassuring this would not happen to their dad, 3 of their grandparents and a schoolfriend of our daughter have died due to cancer ski their reaction was understandable. I had read some of your blog and I suggested to my daughter that she read it too, which she is in the process of doing and it's really helped both her and me. We know the next few months are going to be some of the toughest we've faced as a family but we'll get through it as a family. I will keep in touch now that I've fixed the problem logging in. Thank you again for your kind words and your blog. Stay well.  

Gail

good to hear back from you and there is an element of satisfaction and greater understanding when you are given the plan

is your hubby having a feeding tube fitted (PEG)?

its a difficult six week programme not only on your hubby but you too...if you can getting other people to help with the daily lifts helps, I would take this option up

there is no easy advice regarding food, everyone starts off in the first week thinking "this is ok" then slight changes kick in, mainly lack of saliva and loss of taste.

i found warm Chinese green team helped a lot put to about week 5, it might taste horrible now, but when you have no taste, it don't matter

feel free to ask anything and let us know how he gets on

best wishes

vatch

Good morning, you've no idea how good it is to chat with someone who has been through what we're going going through. My hubby is quite adamant at the moment that there's "no way in hell" he's having a tube put inside him. Having looked into I think quite a few think like this but as treatment progresses they change their mind. I feel it would be better for him if he accepted that the PEG is also part of the treatment and an necessary evil on the road to recovery. If it was upto me he'd have it fitted sooner rather than later. It's good to know there are people like you out there that are kind enough to share their story and offer words of support and encouragement to folk like me.  

Hi Gail 

Like your husband mine was resistant to the PEG but is so glad he decided to have it prior to starting treatment. Even though Im a nurse I can say I wasnt prepared for how difficult the treatment would be and can honestly say the PEG was a life saver when he couldnt swallow anything as the treatment came to an end. Even if he has it inserted with the idea he wont use it you have the comfort of knowing you can use it to at least give him his pain medication when he needs it. If you want to chat about how the treatment progresses( mine had 5 cycles of chemo plus 30 fractions of VMAT radiotherapy over 6 weeks and then a neck dissection to remove lymph nodes) the please feel free to message me. Good luck and wishing you all the best.

Emma

Hi gail

whilst going through my treatment, I spoke to many on here who were going through or just about to finish

many opted for the peg, a few did not, but ended up with a feeding tube down the nose and I am aware of only one super human male that kept eating all the way through .... afterall his name on here is guzzle ... and he is now a dear friend

i am sure there are others that went through this with no tubes too

i also met a great friend going through the same as myself whilst in Addenbrookes ... he was a week in front of me and decided not to have a peg

a few weeks after my treatment had finished I meet him at one of our weekly meets .... he had had a feeding tube fitted down the nose

i can fully understand your husband not wanting a tube, it's an uncomfortable operation, but the soreness only lasts a few days.

i went in on a Monday night, had the tube fitted the following morning and then went down for my first Tomotherapy session letter that evening

I can honestly say that if it was not for that tube, that my health during treatment would have been a lot worse .... and I lost 3 stone with a tube

in all I was unable to eat from about the end of week four of treatment and I never ate anything for another 8 weeks or so

once you go into treatment the throat becomes too inflamed to insert a peg, if you do start to lose weight rapidly, and you can't eat, you could get hospitalised for spells and could even get a nose feeding tube fitted .... and from I hear, fitting a feeding tube through the nose and down an incredible sore throat, takes time and can be painful

with the chemo your immune system will be very low and you will be susceptible to infection, if you are having trouble eating and then start to loose too much weight .... it's going to be very hard and long road to recovery.

My blog gives the ups and downs of the peg .... I had my peg fitted on July the 8th and it did not come out until early December .... towards the end I hated the thing and just wanted it out ..... but it was a life saver and I will always love it and hate it in the same breath

take it from me, this is a really hard treatment to go through and I was fit man going into it ..... get all the help you can .... unless you are superman .... you might need it

happy to help however I can ..... 

keep us updated and all the best

vatch

Hi Emma, thank you so much for taking the time to reply to my post. I hope your husband is doing well and that you too are in good form. I think the treatment regime you endured is the same as Paul is going to start on 1/6/17. Can I ask if his chemo was given as an inpatient? An appointment for admission came in for Paul on the day he's to have his first dose of chemo but he's not too keen on having to stay in (even overnight) and when did he decide the PEG was needed, when you asked for it how long did he have to wait for the procedure, or is it better to have it before you need it?  Sorry for bombarding you with questions but I have so much going through my head at the minute and having the chance to communicate with someone who has navigated the rough road I'm on at the moment is a Godsend, if you don't mind I'd like to chat with you more over the next we while. I know there's light at the end of the tunnel, it just seems like such a long tunnel right now and I'm in the drivers seat taking care of everyone (hubby & 2 teenagers), we'll get there, it may take awhile and there may be a few bumps along the road but we will come out the other side. Thanks again. X