I think we all seem to be settling into this cancer life. It’s as if, life before cancer was a completely different life. Something we will never get back. Now, there will always be cancer with all four of us, and when the cancer goes, Ady will probably go with it.
That can be a pretty sobering thought, and something that crosses all of our minds from time to time.
It did the other day, when we got the letter from the oncologist going over what we talked about at our appointment last week.
Seeing it all, written down in black and white, makes things all the more real.
What we didn’t realise, is that when Ady starts radiotherapy, he will have to stop taking the Methotrexate for his arthritis. I don’t know why, so I will be asking the bones man when we see him in December...nothing is ever easy or straightforward, it seems.*sigh*
The letter also went on about Ady’s co-morbid conditions and how she needed to take these into account when treating him.
After reading the letter, Ady went a bit doomy and gloomy saying how he was sure he would be the first of his brothers to die (he is the youngest of 5 brothers and one sister). He went off for a sleep, like he does when it all gets a bit much. He was more positive when he woke later.
I spoke to the girls today, to catch up with how they are feeling and what they are thinking.
Steph said that she does still worry about it all sometimes, but all the time Ady is at home and not in hospital, she is happy things are OK.
I have kept the girls school informed every step of the way, and I have to say, they have been absolutely BRILLIANT with both of the girls. When I was talking to Charlotte, she was laughing, saying that she could be throwing up green puke in a bucket in front of the teacher, saying she feels unwell and wants to go home, and the teachers would immediately say “How is your dad, it’s OK Charlotte, you can talk to us”...Charlotte would be saying “No, I am actually puking here..I am fine about my dad”, and the teacher would say “Yes, but you can always come to us to talk” They are brilliant and I know that they will help the girls if ever they asked. Charlotte finds the whole thing reassuring and amusing at the same time.
Now guess what....I rang the benefits office again last Friday, to see where the rest of our benefits have got to, bearing in mind that Ady’s sick note started on 14th August and I phoned in the claim about 3rd September , got some of it at the beginning of October and sent everything they asked for on 11th October, well..........wait for it............it is still with the decision makers. They have a back log doncha know. I was very nice to the girl on the end of the phone when she told me to ring back in a couple of weeks. She told me that she could sense that I was about to blow a gasket at her and completely understood. I give up.
We went to our soopadoopa GP the other day. He seems pretty happy with Ady, I think, and said that all his bloods seem OK, even the one for his bowel cancer. That’s a relief, and we will get confirmation of that when we see the arse people in a week or so. Hopefully, Ady will be a year bowel cancer free. Another four years of that and he will be in the cured of colon cancer group. He did say that Ady’s thyroid test was a bit dodgy and so he has put him up 25mg to 175mg daily. Perhaps that will explain why he feels so shattered all the time!
When I claimed Employment Support Allowance last year during the colon cancer saga, the benefits people went through everything else I could claim for, and sent me housing benefit, council tax benefits and Disability Living Allowance claim forms. They told me to fill them in and see how I got on. We were with our old GP at the time, and I spoke to him about the DLA form.
He insisted that DLA (Disability Living Allowance) was for people who couldn’t ever work again. I insisted that actually, there are three levels of DLA and that we should have been claiming since Ady was diagnosed with OCD and arthritis. I told him that you can work while claiming DLA. I was quite sure I was right, because I had just been told on the phone by the benefits person. (Mind you, they have told me a load of bollocks before) We ended up having a bit of an argument about it on the phone. He wanted the name and number of the person who told me this so he could speak to them, so I gave the silly bugger the 0845 number we all have to ring.
Needless to say, it completely put me off putting in a claim for DLA then.
I forgot about it all, but people are starting to tell me that we should be entitled to it. I have spoken to the Macmillan nurses, who are sending me a claim form and will help me fill it out. I also spoke to our lovely new GP who said that he will be happy to answer any questions they may have.
Having a nice, caring, understanding GP behind you, makes the world of difference!
Since I have been doing this blog, I can tell who has been reading it and who hasn’t when I see people. Very few people avoid us now and those who have been reading it, speak to us normally, chattering about the latest goings on. They know exactly what is going on without me having to explain everything, which is great. Those who haven’t read it, tend to treat us a bit more gently and tentatively ask how things are. I get the impression, sometimes, that they are scared of the answer, so I point them in the direction of my blog.
We have lost one or two friends along the way, but gained a whole load more. Some people who we thought would ‘be there’ for us, seem to have vanished, which at the time, was really disappointing, but now we don’t give a shit. There are others, who we really didn’t expect to step forward, who have, which is really lovely. It’s funny how things work out, and for us, our lives are far richer with the people we have in it now, than it was in the pre cancer days.
The phone rang the other day, which Ady answered, cos it’s usually for him these days. I was in the sitting room watching telly and Ady was chatting away in the dining room. After a while, he called through to me saying “Em, have I got three cancers?” “What?!?” I said, “Have I had three cancers?” He said.
“No darling, just the two” I said back. “Oh” He said, “Well so and so, has heard from so and so who heard from so and so that I have three!”
“Well, tell so and so, to tell so and so, to tell so and so, that it’s STAGE three, not three cancers” We had a bit of a chuckle about that and Ady said that he nearly got a panic on then!.
I have been hard at work, trying to get men to go to London for a prostate check. I wasn’t really getting very far, and was thinking to myself, “Hmm, I am going to have to find some building sites with men on” and then, my two brother in Laws, my brother and their friend, all said that they would go and do it, so well done, Andy, Chris, Michael and Dave !! Top men in my book !!!
There are a few other bits to say, I think I have said enough for now and will save it for my next blog.
We are Emma, Ady Charlotte and Stephanie and we live at:
<0.1 Zero Lane,
Just ignore this bit. I need to make a list for the next bloggy bit cos I know I will lose the bit of paper I have written it on, so it’s safer here....Funeral, wedding pictures and what a prat I am.