I thought long and hard before writing this post as there seems to be such a lot of, people on the boards at the moment who are suffering unbearable pain and sadness as a result of this lawless disease.My heart goes out to so many like Karen and Margaret and Jordan and Bren to name but a few, all so brave and so determined to come out of their nightmares with hope for the future.
Yesterday i got a frantic phone call from Robins brother Paul.He has been unable to see Robin since i left as he wont answer the door or return his calls, so he went in search of him last night and bumped into him in the village.

He was heartbroken at what he saw.Robin has huge oedema to both sides of his face and has lost another 14 lbs in weight,on top of that he has a fistula that is oozing pus over the site where his secondary tumour was excised.He told Paul he was fine and walked away.
I rang my sister in law in Portugal and she told me that when he went for his second month check up post tx on June 7th they found a large cyst in his mouth right by the secondary cancer site,which would explain the jaw pain he was suffering before i left.
He had it excised in the clinic under local anaesthetic and was put on a course of strong antibiotics.That was 2 weeks ago and he seems to be no better.In fact the fistula on his jaw is bigger than ever.He is in terrible pain and not sleeping at all.
I couldnt believe that she hadnt let me know about the cyst,but she seemed unaware of how ill he is.

I have since discovered that apart from her, he told no one who is within spitting distance of him about this development and even went so far as to lie to them saying his check up went fine.
I tried to ring him last night but he wouldnt answer the phone although the day before he had sent me a two word text.
It said Happy Anniversary ( it was our twelfth).

Today he text me and asked if i had called last night and when i said yes he said if i was at home he would call me.I was in the car going to meet my daughter and grandaughters so i told him i was out and he didnt reply and i havent heard anything since.


I have a few questions i need help with.Is this the result of what he has done to himself by drinking alcohol during his treatment and since?Is it possibly a recurrence of the cancer?Should i go back?and most of all Why is he doing this?

I tried to ring our doctor this morning but he is on holiday but i do think that somene who is treating him shoud know he is drinking Should i write and tell them.

God i am in turmoil.I am so angry with him and at the same time so very scared for him. His sister says he wants to die and i yelled at her we cant let that happen he is only 44 why would he want to do that? but the one thing i cant do is make him want to live.I was successful in getting him to agree to treatment and i think he hates me for that so how do i get him to fight for his life?

How can any one who had such a good prognosis let themselves succumb so easily?

I am at a loss and as i have said before ashamed to the depth of my soul in the face of so many losing the fight despite their very best efforts to live

Although the alcohol is a bad idea, I doubt that it would have this dramatic of an effect so soon. Many of us has serious infections and issues post Tx, especially because of a destroyed immune system. Just hanging out in public places is detrimental to your health and opportunistic infections, thrush, etc. are common issues.

The only suggestion I can think of is a family intervention with a professional such as a psychologist, minister or some other third party trained in such interventions. Something has to trigger his desire to live and fight this or the battle will be lost I am sad to say.

Being angry at the situation is certainly justified but try not to be angry at him. It won't solve anything and may actually work against the change that you wish him to make.

dear liz, i am crying with you right now. i don't know the answer to any of your questions. there seems to be something so especially awful in this cancer's attack. i am at an early stage in ca of the tongue. sometimes i feel like giving up becauase i dont want to go through what may lay ahead. i have one son working and in college from whom i have kept all but the most elementary details of my disease. he has been sober from drug and alcolhol addiction for over two years and i dont want to lay any stress on him. i have an adult daughter whom i adopted at age five. she has mental disability adn lives at home...but there are a lot of decisions to be made about her future that somehow i cant seem to make. the only thing that i am clear about in your letter is that giving up your life will not help robin. please dont be ashamed. your letter is so full of the very essence of a deep deep love. i will pray for you...and robin. mary ann

YOU have nothing to be ashamed about! He has made his choice and must live with the consequences. You are a wonderful and caring person. Linda

Liz,

Thank you for taking the time to give us an update on Robin. I think about you and your situation often. I'm sorry the news isn't better.

You are always on the front line of support to everyone here. You have been an amazing help to me. And, you have done everything possible for Robin.

If the exact post you listed above were from anyone else...let's say me...you'd be so supportive and so comforting and so helpful. You'd never let me, or anyone else, feel ashamed or bad. So, please don't feel that way.

I wish you'd read your post objectively and put another name to the signature...and, then think about the amazing advice you would offer. I have read many of your posts and you are one amazing advice giver.

As far as going back to him, what does your gut instinct tell you to do?

Please keep posting...this is big stuff you are going through and you shouldn't have to go through it alone.

Love and Hugs and Prayers,

Liz,
I do not agree with one poster who states that Robin made his choices and now must suffer the consequences. No one suffering the effects of cancer treatment is in a good frame of mind to make any type of decisions and none should be punished if they make poor decisions.

With that said, I think you need to go to your husband. He must be very scared and lonely and he certainly needs someone to guide him. No one is saying that will be an easy thing to do, but that is the road of the caregiver. What he is doing is horribly difficult too, yet he has to do it. Him calling you and wanting to talk shows that he hasn't given up, in my opinion. He is far to young for that and I think it's just plain fear that is at the root of his issues. He needs someone to make him feel safe again. I'm pretty sure that someone is you!

I wish I could help you in someway but there are just to many miles between us. Can you refresh my memory as to why the two of you are living apart right now?

Liz, just take a deep breath and know that you will make the right decisions because you love your husband.

Minnie

Oh Liz,
You caregivers have the ROUGHEST time, I'm sure of that from reading other posts--if WE feel helpless, how much you all feel???
Just a few 'thoughts' to mull on from a 'veteran relationship failee'
Was your relationship hunky-dory BEFORE cancer?
You are one very caring lady--hence your fear, guilt, and all the other things you've done both for Robin, I'm sure also for the kids, and for all of us on here.

My personal opinion right now is that YOU need some counselling just for you, then consider couple counselling. Get in touch with your Macmillan nurse to be referred to leeds for yourself, and also to get someone to call on Rob.
You may be his wife, you may love him to bits, this IS a wicked disease, but it's an old saying that a person HAS TO WANT TO CHANGE--no other person can do it for them. I tried for my husband and he died a lonely old man--I'd done my utter best for 12 years, but in the end there was nothing I could have done--and believe me I'd tried.

You have your loving kids---lean on them a bit for you right now and take time to heal yourself before contemplating returning 'to the fray'
Have you tried writing to him--might get 'channels open' with less 'heat', blame and guilt and might ge him to think about his feelings and actually document them.
And if you ever want to come up to the van for a weekend/day/midweek, you can come and draw breath in a field!!
Will email you my mobile,
Take care of yourself Liz,
Brenda

Liz,

Just my 2 non medical cents...I'm afraid he doesn't want anyone to know how bad he is because he doesn't want to stop his drinking and smoking and I really believe he's willing to die for his addictions.

I do however agree that he did show a weak moment when he wanted to talk to you BUT I don't know if that was just to make you feel sorry for him or he was reaching out for help.

He just seems so addicted to his routine that I'm afraid he's not in control of his senses. I hope you will find a way to get him to listen to reason but don't beat yourself up if you can't. I think a lot of caregivers would have already given up by now with what you've been through.

Remember, you are not superwoman and miracles are hard to come by.

just a short note to say robin phoned me this morning and we talked for about 20 mins.It was surreal because he acted like nothing had happened ,but i got a lot of news about how he is and i will write later about that.I am at my daughters for a few days so it will keep me busy.David you hit the nail on the head i think but thanks to you all ,you mean a great deal to me

love liz

Liz, it sounds like you are in a very tough and serious situation. I second Gary and David's advice. Being a caregiver to a person with cancer is a different ballgame than trying to save someone from alcoholism and addiction. One you can be helpful, the other is completely up to the individual. Our only responsibility to those with the disease of addiction is to be available when they come for help. No he probably isn't in his right mind either due to fear, depression, or drink. Here's the thing, he has to address the first issue and that is sobering up to make rational decisions. If not his efforts at cancer treatment will probably be futile. No matter what anyone thinks this is the cold hard truth. The desire to fight has to come from within, and is boosted by those who love and care. If we choose to not fight it is our choice and no one should feel guilty.
We can't live for others, if we could there are many here that would've done that. This case is bitterly sad because of the difficult fights we have all read about lately. But, the bottom line is it's his choice. If you pray, pray real hard for him, and be there if he asks for help. If he calls for a ride to the hospital, take him. That is clearly where his next stop needs to be. They can treat both of his ailments safely then maybe he can find treatments for them and get on with his life. Good luck to you. Lee