Wednesday, 26 October 2011

Shock and Awe.

Yesterday, we went to see our oncologist, Dr B.
 Being the judgemental person that I am, her surname gave me the impression of someone who was going to be a miserable old bag, and probably a bit curt. There are occasions, although very rare of course, when I am wrong. Yesterday was certainly one of those occasions!
She was really really lovely....REALLY lovely.
We were told by the uro nurse, when I rang her to ask why we had an appointment with the oncologist before we had even seen the surgeon for the results a few blogs ago, and she told us that we would be seeing her to talk about being offered entrance into trials called Radicals and it would be up to us if we wanted to bother or not. She said that our surgeon didn’t agree with this particular trial because some people get over treated, however, our surgeon didn’t give us that impression at all when we saw him....anyway, I can feel myself building up into a rant and in all fairness to her, I spose I did put her into a bit of a sticky situation.......actually , no, bollocks to that, I didn’t, we should never have got the onco appointment before the surgeons appointment!

Anyway, our friend Gill (the brainy cow who is good with excel sheets), looked after the girls for the afternoon while we went off to Maidstone hospital.
We set off at 3, in good time for the appointment at 4. The drive only takes about 40 minutes or there abouts. Well, bloody well blow me down!. We drove through town to get onto the Pembury road, and the entire place was chocca. I turned around in the middle of the road to go a different way, and that road was closed with road works....bollocks...
Not to worry, I thought, we will shoot through the industrial estate and go that way. We went back through town to get to the industrial estate, and there were bloody cars everywhere! It seemed that everyone had the same idea....fuck it.
Luckily, from my care in the community days, I knew all the back roads, and so we shot off to Southborough and I decided we could go through Tonbridge and out to Maidstone that way. By the time we had got to Southborough and were sitting in traffic lights and road works there, it was half past three.
I HATE, HATE, HATE being late. And yesterday, I HATED people driving slowly, people letting learner drivers out so they can pootle, road works, red lights and people who don’t put their foot down the moment the lights turn green...instead, the light goes green so then they put their car into gear and pull away slowly.......yesterday, it got right on my tit name it, it happened!
Ady rang through to the hospital to say we were late and they said that they would let Dr B know.

We managed to arrive at 4.15.
We went to reception in oncology to say we had made it. They recognised who we were and we had a bit of a chat about the traffic and wotnot. They were both young ladies probably around their twenties, maybe early thirties. We had been sent forms to fill in..things like emergency phone numbers and next of kin. Even though I am a form filling pro, I forgot to get Ady to sign and date the form.
He signed it and asked what the date was. One of the girls replied “It’s 25th today...oh goody, it’s Christmas in two months!”
“Oh good,” Ady said. “I can get my nuts out”
I stared at him with raised eyebrows and said “Well, your nuts are hardly going to be much use now, are they”
The receptionists started laughing and I think I might have said it a bit too loudly because I heard a few sniggers behind me in the waiting room.
We all had a good chuckle..well actually, the receptionists were crying with laughter and we went to take our seats.
I was a bit worried that we would be rushing straight into the appointment before we had time to gather ourselves and clear our heads of all the drivers today that were purposely trying to piss us off.
Luckily, we sat for about 20 minutes before we were called.

Dr B is just simply lovely. We spent a good half an hour with her. She was truthful and honest, let us (well, me, actually) speak and ask questions and we went through everything. She was warm, friendly and couldn’t ask for a nicer oncologist!
At the beginning, she didn’t mention Radicals at all. She went through Ady’s history. For ease, I handed her his repeat prescription which she made notes of. She then went though the pathology report explaining everything.
I asked about the chances of recurrence and that I understood them to about 50/50 within ten years.
Dr B said that he has quite a few odds stacked against him...starting with the seminal vesicule invasion, positive margins and extra capsular extension...she also looked at some other notes she had and said that although Ady is in the zero club now, his chances of staying there over the next three years without further treatment are pretty slim.

She has offered Ady adjuvant radiotherapy. As he is in the zero club, it is his choice if he has it. He can always wait until his PSA rises and then have salvage radiotherapy.
I asked her what she recommends that we do and what she thinks we should do....what was her gut feeling, given the pathology etc and she said that she wants to give adjuvant radiotherapy.

She has said that she wants Ady to spend time recovering from the two surgeries he has had over the last year, and that he is to remember that they were both major surgeries and this will take time. She wants him to get his continence back as much as possible and to see her again at the end of January. He is pleased that he is being given permission to take time off work because he feels very guilty about not working*rolls eyes*
It might be, that come January, he may still be in the zero club, and might think hmmm, I am feeling OK and I want to wait until it rises. In which case, we can refuse radiotherapy.

She also said that there is a possibility that he may have a mini micro met lurking in his bones somewhere that is completely undetectable and will only become detectable when it starts growing and creating PSA....hopefully, that scenario will either not happen, or be many years down the road!
Ady and I both agreed that Dr B is the expert, and she knows what she is talking about. We had good chats about new drugs, chemo, hormone therapy and the Americans. We talked about the whole journey to come.
At the moment, without doubt, Ady is going to have adjuvant radiotherapy. Salvage radiotherapy sounds a bit desperate to me and we want Ady to have the best chance of survival he can get.
So this cancer is going to get some shock and awe treatment and we will be one step ahead of it. If we go for salvage, then it will be like playing catch up all the time.

We asked about the concern about the colon surgery and radiation to that area. She said that his rectum area might lose its elasticity. It will mean that when he has a poo sitting in the departure lounge, he won’t be able to keep the doors closed for very long, and there might even occasionally be a stampede and he will shit his pants, and then again it might be all OK. It wasn’t something that was making her not want to give radiotherapy.
We also asked about the Radicals trials and she said that absolutely, we could go on that. Trials or not, she wants him to be blasted. There are two arms of the trials she would want him would be radiotherapy alone and the other would be radiotherapy and hormone therapy for six months. He would be randomised into one of those. She is sending us all the gumph to read about it so we can decide if we want to be part of a trial. My feeling is that we will.

Normally, I think you have a PSA test every 3 months....fuck that! I asked if we could have ours in with his DMARD test every 6 weeks. She agreed, but only for the first year, and then we have to go to 3 monthly....she is bloody nice, our Dr B.

Oh yes, and before I go, I got a letter from my MP about the Medway and Maidstone hospital saga on 14th October.
He got a reply from the NHS Kent and Medway trust. The letter was dated 29th September.
It started with; Dear Greg, Thank you for your email on 17th August with an urgent enquiry relating to the proposed location of Ady’s surgery.......Every time I read it, It reminds me of something out of a comedy sketch !

Oh well, onwards and upwards, eh J


  1. Reading this latest blog it reminds me of how au fait you eventually become with the cancer terms.
    From those first terrifying days of not knowing much, you end up like you conversing knowledgeably about treatments.
    For what it's worth I think you have chosen the right path, and of course you can always say no later. Onwards and upwards, it's been a tough mountain to climb but you are so much nearer the top now.

  2. I remember the early days of utter horror and confusion very well. It is thanks to forums and our ladies group that I have learnt so much more than I ever thought I would. This is such a complicated cancer and I think that by learning as much as you can about it, you are winning half the battle.
    LOL, even Charlotte and I were discussing PSA velocity this morning !!!

  3. Did you see The Times yesterday? They had a middle pull out section on prostrate cancer.
    I'm sure you've read all you can and more but when I saw it I thought of you and wondered if you'd seen it.

  4. I've just read this whole blog after seeing the toe saga on HHO.
    Emma, you and your family are an inspiration! I have my fingers and toes crossed for you all.
    My mum had cancer and I know what it can be like and how hard to just keep ploding on each day. Well done!
    I hope this doesn't come across as patronising as that isn't how it's meant. I just wanted to let you know my admiration!xx

  5. Thank you HuntingB :)
    No, you don't come across as patronising at all. :)
    I love doing my blog, it keeps me sane :D xx