Tarceva, a diary

Finally got Tarceva in him at 21.30, hoping for early night (plumber coming 09.00), Tom has always come to bed just after me, a man thing checking doors etc, (I already checked doors etc, I dozed off for a moment then heard a crash, my Tom had another fall, blood everywhere, forehead nose, bleeding, a nasty gash under his eye, wanted to take him to a & e, he wont go, I stopped bleeding, he looks a mess.

Just had a battle royal to get him to lie down on sofa, begged him to sleep, no chance, got him into bed 23.29, I’m so tired, but cannot rest, look what happens when my back is turned. All the “kids” have offered to help!, an hour here and there, 5 of them, 27 – 48 years, three youngest don’t drive which don’t help, took his dressing gown upstairs, he tried to get out of bed, I "ordered” him to stay put!

01.03

Just tried to sneek into bed, he awoke immediately, wanting to wee, grabbed a “portable” urinal used for second time today, never used them before! He tried to go downstairs, I actually yelled at him to get back into bed, 23 years and barely a cross word, ye gods it was easier with teenagers. The next two hours went down hill, full phycho mode.

By 03.00 called Brother in law Danny for help, Tom shoved me in anger, he has never been like this with me, I was frightened, Tom was making no sense at all, we tried to get him in the car to take him to hospital, he was having none of it.

Danny called for an ambulance which arrived quite quickly, eventually they got him to A & E, we followed in car. The Triage nurse was lovely, but still had to wait till 06.30 to see Doctor, who recommended a brain scan & steri strip for the cut under his eye, which by now looked like he had been in a prize fight. I had to deal with the most unhelpful & bad attitude nurse regarding his meds, so Dan gone back with the boxes & morning meds, because of her attitude and because a previous stay at BRI left my Tom in agony for six hours because they could not get meds from the pharmacy, etc, would not have been a problem at Oncology dept. I nearly brought Tom home, he was ready to come too, but Dan made us see the light. So here I am home alone

Love Jessie

Update,

Tom spent a few days in hospital, it turns out that besides the meds I gave him he had been helping himself as well, built up toxic levels of Oxycodone.Now meds locked in cash box. Tom still doing daft things, like putting on washing, but not emptying the previous load, blue undies now. and losing things, have now had to lock all keys away, and he's lost his phone, its in the house somewhere!

Now have a Hospice nurse, she visited on 14th Dec suggested change of meds, started on 15th Dec,

Wed 16th Dec

Tom woke me at 02.30 he wanted my company, another long night.

Drove to coal yard, they know us well, I gave Tom cash to pay for coal, he used his card and lost the cash, it turned up eventually, the coalman phoned me to say he didn't think Tom was very well, ya think.

Thurs 17th

00.50 he disappeared from bed, I found him making sandwiches for an Irishman at the gate, (he cant get out there)

he spent the rest of night & day pulling stuff out of drawers & cupboards, while I followed putting stuff back. I do wish he would sleep, so I can, a very helpful relative (first visit for months) suggested that he was having enough sleep, so he has picked up on that as an excuse not to go to bed

Fri 18th Dec

First night out in over a year, daughter in law birthday, Tom managed a few hours, but he kept "resting his chin on his chest", so he looked very odd, he kept this chin thing up all weekend, I tried to get him to hold his head upright, he ended up looking like Rigby from rising damp, I called Oncology for advice, as I was worried the tumour was affecting his spine, they asked me to bring him in, but Tom refused to go.

Mon 21st Dec

Its like a fog has lifted, he is upright mostly, and we are actually having an adult conversation, he's not staggering or falling, and he is coherant.

Tues 22nd Dec

Hospice Nurse visited, she could not believe the change, he is still coherant and not hallucinating, I had first full night sleep in an age, he slept as well.

Thurs 24th Dec

Oncology, the Tarceva has stopped the tumour growing, so prescribed more, the only side affect is the rash, so the best news in ages, Dr very pleased that Tom is more like his old self.

Christmas day

Well he made it, we had a lovely day, at youngest daughter's for dinner.

Boxing day

Spoke to soon about side affects, diarreah, and plenty of it, everywhere, poor love he is so embarressed, glad I have outdoor hose, no not for him, the clothes mats towels.

not something he ate, he had what we had and we were all fine.So glad my other daughter stayed for Christmas

29th Dec traveled to Hamphire to see Tom's sisters, Tom felt able to travel, (3 hous each way) we were only there two hours and he wanted to come home.he lost concept of time, and thought he was there longer.

New year, Tom is so much more settled, I hope it continues,

Peaceful new year to you all

Hugs

Jessie