As well as discussing the horrors of injections , pumps and erectile dysfunction, the uro nurse also talked to us about time frames and when Ady could expect to get back to work after radiotherapy.
We are seeing the oncologist again on 26th January where we will agree to start the radiotherapy. She doesn’t want to see Ady until then so he can just rest and recover from the two surgeries he has had, and we can see what his PSA is doing too.
It feels a bit odd, having seen loads of people pretty much weekly over the last few months, to not seeing anyone very much for the next three months...Ady feels a bit as if no one is looking after him at the moment and everything is at a standstill as it were.
Our Uro nurse said that when we see Dr B (our Oncologist) at the end of Jan , they would have to do a mapping scan to map the insides of Ady’s body. They would then have to do some tattoos to mark the area for radiation. I ‘think’ he has to have some other scans, but I can’t remember...perhaps not if his PSA remains undetectable.....
He also needs to see the trials people to go through all that that entails and sign all the paperwork. So it is possible that he won’t get started on the actual radiotherapy until March she said. So then you have all of March taken up with Radiotherapy and she said that it will take a few months to recover from that, what with shitting and pissing everywhere, possibly, as well as the feeling rough and the tiredness that goes with it.
She told us not to expect to go back to work until late July, August...flamin’ ‘eck ‘n’ noras!
So, we went off away from that with lots to think about and deal with. We had planned in our minds that we would talk to Mr M (the rhumet – rumitolog- rhumatol- oh bugger it, the arthritis man) to see what we have to do to get Ady off the Methotrexate. Do you just stop taking it? Or do you have to come off it slowly? I wonder if there is anything that can be taken in its place....or will his bones cripple permanently? *sigh* Anyway, we are seeing him on 8th December, so we can plan that ready for January...hopefully...
Later in the afternoon, the phone rang and it was the lady from the Radicals Trials. She sounded lovely and wanted to know how we had got on with reading the booklets they had sent us. “Very well” I said “And Ady is happy to go on the trial”. It’s only fair I think, because the only way they have got this far in treatments for prostate cancer and any other cancer is because of the people who have gone before us who have taken part in trials.
She seemed jolly excited about that and wanted us to come and see her to sign the paperwork so we could get cracking!
“Oh blimey” I said. “I think you might be being a bit eager here because we have been led to believe that Dr B (oncologist, lovely lady) wants Ady to rest and recover until the end of January. Then we are seeing her to say if he still wants treatment if he is still in the zero club and if he is not in the zero club, then to discuss a treatment plan. And also, we have the Methotrexate business to sort out, but don’t worry because Ady definitely wants radiation and will happily do your trial, hmm, I could have this all horribly wrong though....”.
“Oh, OK “ She said. “I will email Dr B then and check that that is what she wants and get back to you”
She rang back the next day to say that yes, Dr B did want Ady to wait until January and tra la la la , so she wanted to make an appointment for us to see her after Dr B, sooo, now we are seeing Dr B on 26th and Mrs Radicals lady on 30th.
She explained that because Ady and Dr B has a preference for Radiotherapy, he can’t do that arm of the trial, but there is another arm of the trial which is the hormone part. They are either no hormones and just radiation, or six months of hormones and radiation or two years of hormones and radiation. I have a sneaky suspicion that we can be randomised into 6 months or nothing and forget the 2 years bit, but I might be wrong.
So, if he has 6 months of hormones in addition to the radiotherapy, then he has to have 3 months of hormones before he can start the radiotherapy, and 3 months after, so in that case, I think we can cross 2012 off our calendar.
Funnily enough, since we have had the girls, it has been really difficult to go to any New Year celebrations and because of that, invites would be rare. This year, however, the year we are not particularly looking forward to and we have been invited to a party, but bugger it, we are going anyway, can’t turn down a good old knees up can you!
I decided that I ought to ring the benefits office again to see how they are getting on with our claim and also to ask for a form so we can have help with the interest on our mortgage as we have been claiming for three months now and thems the rules.
Can you bloody well believe it (you probably can by now actually); our claim is STILL with the decision makers and has been for over a month. OVER a BLOODY MONTH !!!
And because our claim has not been sorted, we are still on the National Insurance contributions based part and not the income related part where we should be. You can only claim for the mortgage interest payments if you are on the income related bit. So, not only have they STILL not sorted our payments out, they are stopping us from being able to get extra help we need!
The man I spoke to has emailed the decision makers to let them know this. You can bet your life that when I ring tomorrow wanting to speak to a manager to complain (something I REALLY don’t want to do to be honest which is why I haven’t so far), I will get a letter in the post that day saying they have sorted it!
They keep telling me not to worry as we will get the payments back dated, but that doesn’t help with the bills that need paying now though does it! Silly bloody lot!, never mind, eh J
Thank God for other peoples kindness, that’s all I can say. I hate to think were we would be without you all !!!
Ady decided to go to his cousins for the weekend to have a bit of a break so he left on Friday and came back on Monday. Poor sod had to take a whole extra bag especially for his piss pads and medications.
I got the girls to do their homework on the Friday as soon as they came home from school and my friends came round for dinner, which they brought with them, I just had to supply the salad. We cooked our food on the raclette and as I had fed the girls earlier, they did their own thing leaving us to have a lovely evening. Thanks Moo, Martha and Ness J
On the Saturday, we spent the evening stuffing sweets and drinking fizzy drink (don’t tell Ady!) and caught up with I’m a celeb from the night before, XFactor and then I’m a celeb again, with the open fire I had managed to light.
I can’t remember what we did on the Sunday, so I can’t tell you about it. Oh yes, we had a table meeting about Christmas presents and I got the girls to write down everything they wanted. I made it quite clear that I wasn’t getting everything on their list, but at least I could get them stuff that they actually wanted and would like.
My girls are so totally and utterly different and in my next blog, I will tell you what they have asked for as long as you don’t go thinking, naw, I will send them something off the list for a surprise, cos it is all sussed !!!
Oh yes, and my ankle is still swollen, not as much, but still swollen and painful two weeks on !
The bloody cat has just brought in a dead fish he has hooked out of Ady’s little pond and is sitting here chewing on its tail....naughty boy!
We are Emma, Ady, Charlotte and Stephanie and we live at