Friday, 7 October 2011

Benefits and Appointments.

Life has been pretty much carrying on as normal over the last few days, although I did go to my auntie’s funeral yesterday. That was sad, but it was nice to catch up with the cousins. We don’t see each other very often.
Ady offered to come with me, but I didn’t think that a funeral would be a nice day trip for him psychologically, under the circumstances... so he stayed at home.

We had phoned the benefits office daily to see if the decision makers had made their decision and on Wednesday, they told Ady that they were busy and had lots of people to get through . But we could always ask for a crisis loan. I looked into getting one, and the phone was constantly engaged, so I went online. What a nightmare!, they wanted to know my income, outgoings, down to the last penny, and a set of accounts, again and then, that would go to a decision maker, and they would let us know what they could lend us. That actually really annoyed me. I don’t have the energy for another form, more waiting, more calls, more begging and pleading.....taking weeks...
It also annoyed me that we had nothing in the bank. Money was going out to pay the bills, but there was nothing coming in to pay them with. We were at the top of the overdraft.
I thought to myself, not to worry, I will phone the bank and ask for the overdraft to be upped for a couple of months while things are being sorted. They do say, if you are having financial troubles then let them know and they will help, so I rang them, and the computer said “no”.
I then thought, bugger, perhaps I need to worry then, because this is getting a bit too serious and Ady is really not coping with this at all well. We have literally NO money...nothing.
I had enough petrol in my car to get to the funeral, and as my auntie was my mum’s sister, I really wanted to go, so I did.
 I had time to think about things during the day, and gave myself some head space to think about what to do next. I decided that as soon as I got home, I would be phoning the benefits office, and if they hadn’t sorted our money out, I was going to ask to speak to a manager and ask for our claim to be dealt with as urgent. This was making me and Ady ill and not helping in his recovery at all, in fact is was hindering it. I had my speech all worked out and I was not going to take no for an answer.
So, I rang them, and they said the claim had been dealt with and Ady has been put back in the support group. Money will be going in our account on Tuesday. They need some more info about me so they can possibly up our money, but atm he is getting £99.00 per week. This may not seem very much to you, but let me tell you, it is a much better than the nil we were getting !
I was SO relieved, and so was Ady. In fact, it was a bit like being constipated for a month, and then having a great big poo !!

Just have a think for a moment about what it must be like to one minute be living a normal life, no savings and no overdraft, just merrily living within your means. Then the next minute, you have cancer, you have an operation, you can’t work, you have no money, you need to pay the bills, feed your family and at the same time, fight for your can get a bit stressful and I take my hat off to Ady, I really do. That’s all I will say about that for now.

Now, we were told that Ady would have his catheter out on Tuesday and an appointment would come in the post, cos we need the bar code on the paper to get into the new all singing all dancing hospital. I probably don’t need to tell you that one hasn’t arrived, so I phoned the nurse and left a message. Off I went to do my dinner lady duty.
I came back home and a letter had arrived, which Ady had opened. He has decided to take that job on, much to my annoyance!
This was a letter from the oncology department. He has an appointment for 25th October with a radiotherapy  person.
Ady was furious that he knew nothing about radiotherapy and that as far as we were aware, we were waiting to see the surgeon to be told the histology on the prostate. We had been told all along that if the cancer is contained  and was removed by surgery, then no further treatment was needed. Did this letter mean that it wasn’t contained? Has it spread?

I was pretty shocked at the letter, and wasn’t sure who to ring, so I rang the uro nurse. She didn’t answer her phone, so I rang the surgeon’s secretary. She suggested that I rang the uro nurse again, but was pleased to say that she could see there was an appointment for catheter removal on Tuesday at 9.30...I spose that was one thing sorted!
I rang the uro nurse again and this time she answered. I asked what was going on and realising this was possibly going to be a long call, asked her to ring me back to save my mobile phone charges.
While we were waiting for her to ring, the catheter nurse rang to tell us that we had an appointment on Tuesday at 8.45 for catheter removal.....we have decided to turn up at 8.30 with a flask and packed lunch! We will hope for the best on Tuesday, whatever time the appointment is !

The uro nurse rang and said that we shouldn’t have received the letter about radiotherapy until after we had seen the surgeon and that someone was being a bit too efficient...well fuck me, that’s a first !
She told me Ady’s gleason stayed the same at 7 (3+4) but unfortunately his staging had gone up to stage 3 (locally advanced) as the edge of where he had cut, contains cancer cells (positive margins) indicating that some cells have been left behind.
She said that at the appointment with the oncologist, we will be offered the chance to go on a trial called Radicals.
They are wondering whether it is better to blast the prostate bed with radiotherapy or hormone therapy or both straight away, or whether it is better to leave it until there is a rise in his PSA and then blast it.
There could be a rise in PSA or it could stay at undetectable for months or years or forever.
Do you go for the wait and see approach, or do you get the weaponry out now and (perhaps unnecessarily) blast immediately?
If we wait and see, will things get worse and be more difficult to treat?

It is absolutely atrocious that this has happened the way it has. We should have been told this in the surgeons office, not by a letter hastily posted arranging an appointment for radiotherapy.
Its a bloody shambles and we are left to pick up the pieces, do research on the little we know and deal with the whole sorry bloody mess.

We are Emma, Ady, Charlotte and Stephanie and we live at

Prostateless Avenue,

1 comment:

  1. It is outrageous that the letter arrived before you'd seen the consultant.
    I don't envy the decision to be made, I hope you are guided by the consultant.

    10 years ago, a similar thing happened to my sister. She had a smear and then received an appointment for an oncologist. The shock of it gave her an epileptic fit, something she hadn't had for 8 years.

    It's a shame to see things haven't got any better in some areas of the NHS :(.