Thought I would come on and catch up on & update my old "WN" & Mac buddies who aren't on FB. I come on and see that Kezzer is having problems with benefits, Guess what! so is Laurence, Well I guess all of the "WNowers" who came on around the same time will be going through the 3 year review.
Laurence got his higher level DLA with a DS1500 the first time around . For people who don't know what a DS1500 is, its a form your consultant/Mac nurse can fill in that says you are terminal and not expected to survive beyond 6 months.
Laurence has done so well and defied all expectations. so 3 years later we are up for review, Our Mac nurse Michelle said she would do another DS1500 again this time. Call me stupid but I felt it might be tempting fate. He's still terminal and its 3 years down the line anyone should realise he's not got any better. Not the DWP they need more information before they can make a decision. He took early retirement on grounds of ill health which meant we had at least some income and was better off than a lot of others. Now because he's survived 3 years he has to undergo a medical to see if he's still unfit to work.
All this comes in the same week we have just found out his tumours in his lungs and liver have progressed and more new ones have grown. Laurence has adenoid cystic carcinoma that is a very slow growing rare cancer but does not respond to chemo very well if at all. Chemo was offered last week but after going through all the pro's - shrinking the tumours very slightly balanced against the con's - fatigue, nausious etc, and the fact that he feels quite well at the moment except breathlessness and tiredness. It would appear more than likely that the possible side effects outway the benefits so he has said no.
If you saw Laurence walking around you wouldn't think there is much wrong with him. We have been told this by lots of people. To hear him speak you may think he's drunk or maybe had a stroke. We go on holiday and up to our "Tin Villa" in the Dales. We try very hard to have as normal a life as possible. BUT the reality of it is Laurence has terminal cancer. He has no tongue, we were told at diagnosis he would never be able to talk again, (preparation was underway before he came out of hospital to get him a speech board.) He can talk. Ok some people have trouble making out some of what he's saying and its not his voice from before his op but its speech.
He cannot eat or drink anything at all through his mouth as it goes into his lungs. He feeds through a tube ( PEG) that goes into his stomach. During the night he connects to a pump and it takes 8 hours for his food to be pumped through. He has to make sure he has over a litre of water a day syringed into his PEG to stop dehydration. He is not supposed to put anything else other than water down his tube. Does that stop Laurence? NO !!! He goes for a pint because it makes him feel normal.
He can't drive has he can't turn his head far enough to the side to feel safe, due to scar tissue around his face. But he also classes this as a bonus cos when we go out he doesn't have to take his turn driving so he can have a drink.
He can't get travel insurance now but we still go away. OK we have to go through security at the airport and have to be checked every time because we have to carry fluids in our hand luggage and his food pump incase luggage goes missing.
When you cough and mucous comes into your throat you use the muscle in the back of your throat and your tongue to clear it . Laurence can't and it blocks his airway he has to try and get enough air into his lungs to cough it out, many times his lips nose, cheeks and ears going blue before he succeeds, all I can do is put my hand on his shoulder and speak calmly to him to try and quell his panic.
Laurence try's to walk every day to keep his lungs functioning as best as possible but it tires him out, If the weather is cold he starts coughing and usually has one of his choking fits. This will probably go against him.
I agree the government needs to get the scroungers off benefit. Hell fire why should I work my ass off to keep someone like our bloody lazy niece who hasn't hardly worked a day in her 32 years of life on benefits. She needs a new carpet she gets it, school uniform for her 1 son she gets it and I pay for it through my taxes yet no one gave me anything when my 3 sons we're little. BUT they are penalising the people who should have it.
Laurence will be 60 in June up to him having to give up work in 2008 he's hardly ever had a day off work. He has paid tax & NI since he was 15. Its highly unlikely he will be around to claim his state pension and he can't have that earlier on grounds of ill health. I am taking early retirement from a well paid job so that we can spend some time together before he's too ill to do anything. Yes I have a pension but what I will receive a year is what I earn a month now before deductions. I was hoping to claim carers allowance which I could have been claiming these last 3 years but haven't done, this now seems in danger.
Oh Hell fire I've got on my high horse and really had a rant, sorry folks.
At present Laurence is still doing well and we are enjoying what time we have left. He is infact going to Prague for 4 days tomorrow with one of our sons who is taking him for a birthday treat. Don't know when I'll see em again as Prague has 800 pubs.
We then go to our beloved Tenerife at the end of April for a week, I retire at the end of May so lots of time spent at the "Tin Villa" which I am naming "Villa Estano" which is spanish for Tin Villa. Then hope to meet some of you at the Belfast Bash in June. So all in all we are Living Loving and having Lots of Laughter. The one thing the DWP cannot take from us is our spirit Shelley xxxx
