And The Decision Is...

Well, that has been a tough 24 hours and all we did was think and talk.

We didn’t get to bed until three in the morning as neither of us could sleep, so we sat up drinking tea and coffee talking about all the pros and cons of having radiotherapy and not having it.

The final decision had to be Adys. He is the one with the cancer and he is the one who has to go through the treatment or not. All I could do was talk through the options and go around in circles with him.

Ady really felt very much on his own with it all. He is simply not one to make decisions at all. Normally, I make the decisions and he agrees with them. It’s much easier that way I find !

We went through all the different scenarios and weighed up all the benefits and negatives. We talked about the children, the cancer and general life. We also talked about what Ady has been through and how it has affected him, and us as a family.

What Ady really wanted, was someone to tell him the best way to go. He was all ready to go for radiotherapy, but the oncologist threw a right old spanner in the works by sitting on the fence yesterday.

After a whole great big long night, Ady came to the decision to go for radiotherapy and he wanted me to ring the oncologist in the morning to speak to her about it because we both felt that she had gone off the idea of giving it to him.

Ady then went to bed and slept well.

This morning, I rang the oncologist’s secretary. Can you bleeding well believe it, she was on bloody holiday until Monday, but not to worry, the message said, leave a message and someone else will deal with it.

I left a message asking for the oncologist to ring me, if possible, today, but I understood if it wasn’t until Monday.

We were both hoping that we wouldn’t have to wait all weekend to talk to her, we wanted to get it sorted, and in a way, have her approval of what Ady wanted to do.

Ady was still happy to do radiotherapy, but had a nagging thing in the back of his mind that the oncologist was not so happy.

All day, I waited for her to call, and at 5.20, she did. Phew!

Our oncologist is lovely, and I overheard someone else in the waiting room the other day saying that she is the top gal, so that’s good then.

I explained to her that we felt she had really changed her tune about treatments and before Christmas, she said that the increased percentage of bowel problems would not stop her from wanting to do adjuvant radiotherapy, yet this time, she seemed to think it is a problem.

She said that it still would not stop her, but she was sitting on the fence because she wanted Ady to decide because there are pros and cons for each way.

I told her that he wanted radiotherapy, and she said absolutely not a problem.

We had a good chat about adjuvant versus salvage and his chances of survival and recurrence.

We talked about his pathology report and the risk factors that came with it.

Dr B booked us in straight away while we were on the phone. We then started talking about hormone therapy and the Radicals trials.

During our conversation, I mentioned that Ady feels that he would really kick himself if he had a PSA rise later on and he hadn’t fought it with everything he could in the early days.

We were going to see the Radicals trial people on Monday to get randomised into the hormone therapy part, but Dr B said that actually, she will treat Ady with the standard treatment and give him six months of hormones and 4 weeks of radiotherapy.

This will be off the trial and she has cancelled Mondays appointment. She feels that there is a chance that he has micromets in his bones so a few hormones won’t hurt.

She has faxed our lovely GP to get a prescription of Casodex to take every day and another tablet to take once a week to stop him growing boobs! Oh, dear,God!

We will start hormone therapy on 1^st February and radiotherapy in about a months time.

I asked her if she thought we were over reacting, and she said absolutely not.

Ady might as well have treatment now, while he is young enough and strong enough to give everything a jolly good bashing before the cancer has a chance to regroup. Hopefully, this treatment will see the end of it for a very long time!

Ady and I spent a lot of time hoping someone would give us a ‘yes do it’ or a ‘no, dont’, and then my friend Caroline said  “There are too many unknowns to make a rational, informed decision. Therefore, it’s got to be a gut one that only Ady can make”

Those words made everything so much easier and confirmed that we are doing the right thing. It is Ady’s gut feeling that has made his decision, and he will have my full support.

It was a toss up between his arse or his life really. His arse has taken a good pounding in recent months, so another pounding wont make much difference. You only get one life.

Its bloody hard, trying to make the right decision and do what is best. After all,  if people were really capable of making the right decisions all the time without guidance, then Amelia Lily would have won the XFactor. We all make mistakes, but in this instance, Ady and I both think we are making absolutely the right choice.

The road we will travel over the next six months or so, is going to be a bloody hard one, there is no doubt about that, but I am sure that we will do it with humour, tears, friends, jokes and courage.

Lucky or Unlucky Dip?

Where do I start...Oh what a conundrum!

This blooming cancer lark is a right old nightmare.

When we went to see the oncologist before Christmas, she was keen for Ady to have adjuvant radiotherapy, regardless of what his PSA was doing.

She wanted him to go away and recover from surgery and do his best to regain his continence and erectile function and then come back with a view to starting radiotherapy. She also said that Ady might come back in January with a zero PSA, feeling well and decide that he doesn’t want radiotherapy and would rather wait and see until his PSA rises and then have salvage radiotherapy, but in her view, he is at a very high risk of recurrence  and she felt that he should have radiotherapy.

So, we have been preparing ourselves for Radiotherapy. The oncologist thinks he should have it, so he will have it. Great. Sorted.

She said that he can enter the trial called radicals where they are trying to see if it is better to give prostate cancer patients adjuvant therapy or salvage therapy. There are lots of different ‘arms’ to this particular trial. One of them is the radiotherapy arm where you are randomised into a computer, and it tells you if you are to have radiotherapy or go on active surveillance (wait and see). She said that if he gets the wait and see option, then she will pull him out and give him radiotherapy off the trial.

If he likes, he can enter the hormone arm of the trial, where they randomise you into either no hormones, 6 months of hormones or 2 years of hormones, regardless of the radiotherapy she wants him to have.

So, it is now the end of January and we went to see her today, thinking that we were going to get the dates for the radiotherapy.

I shall get down to the nitty gritty, cos it is confusing and long winded.

Basically, she is pleased that his PSA is still Zero and pleased that his continence has improved. She is also delighted that his erectile function is improving too. So much so that she is now undecided if he should go ahead with the radiotherapy because of the down sides.

We had a good chat about it all and she has left it up to Ady to decide what he wants to do. This is a man who can’t decide what colour top to put on in the mornings! Oh dear God!

Here are the facts and figures we have to think about....

His PSA is still zero. That’s a good thing. Has the surgery worked and is he ‘cured’?

Ady has a 70% chance of the cancer returning if we ‘wait and see’.So a 30% chance it wont.

Men deemed at high risk of recurrence are those with one of the following; extra capsular extension, positive margins, seminal vesicle invasion and a high starting PSA. Ady has all of those.

Because of Ady’s previous bowel surgery, there is a 20% chance that he will become permanently incontinent because of the radiotherapy. Should we think that that means there is an 80% chance he wont?..Men who have not had bowel surgery have a 10% chance...

Ady will have to stop his Methotrexate (arthritis medication) for the 4 weeks of radiotherapy. How will that effect him?...he can have a steroid injection to cover him if he wants.

Any erectile function he has gained, will be lost forever with radiotherapy.

There is a 30% chance the cancer wont come back.

He will be incontinent of urine during and a little while after radiotherapy.

What if we go for radiotherapy, end up with all the side effects and he didn’t need it?

What if we don’t go for radiotherapy and his PSA rises, so then we wish we had gone for the radiotherapy, so we have salvage radiotherapy, only to find that it has spread to his bones?

Would adjuvant therapy have stopped the spread?

What if it has already spread and adjuvant radiotherapy is a waste of time?

So in a nutshell, she wants him to have radiotherapy now cos he is a high risk patient, but she doesn’t want him to have it because of the risk to his bowels and erectile function, oh, and the arthritis meds.

Ady has been left with the choice of what to do now.

At the moment, we are seeing the trials people on Monday and we can ring the oncologist when we like.

So many question and no bloody answers, so please put yours on a postcard !

Allsorts.

Blimey, there are never enough hours in the day is there.

Only five minutes ago, the oncologist appointment was next year, and now all of a sudden, its next week!!...that’s a bit of a scarey thought actually.

My friend from Iain Duncan Smith’s office rang me at the New Year; too see how things were going. She told me that I can appeal the compensation amount for the utter shambles, but firstly, I can’t be bothered and secondly, it was never about the compensation, we just wanted things sorted so we could claim for what we were entitled to.

Oooh, this brings me nicely onto the DLA claim (oh and I mustn’t forget to mention the mortgage too). You know I told you that I have filled out the war and peace novel claim form back in December and that I was doubtful that we would get anything,,,,well I was right.

They have turned us down for the lot. I can appeal their decision *yawn sigh* and at first, I thought nah, I just can’t be bothered, everything has been such a bloody battle, I am tired of it.

But I am one of those people who hate injustice, and hate it when people haven’t listened to me or not  read the form properly and so have got completely the wrong end of the stick. They were telling me that Ady can do things when I know he can’t. That pisses me off, so I am in the middle of writing my appeal letter. Lets see how that goes eh.

On a brighter side, the mortgage claim, which I was dreading, actually turned out to be the easiest thing to do. Within a week or so, it was all sorted!

They only wrote to me once, asking me to clarify the amount of our mortgage with a yes or no answer. The thought of having to go through the 0845 number, or composing a letter, filled me with dread, so I thought to myself “Hmmm, I know, I will see if my new BFF (best friend forever) from Iain D S office will pass a message as she must surely have a hotline number to these people” Well, thank blooming God, she was more than happy to!

So job done, and we get £100. a month towards our mortgage. That’s better than a poke in the eye with a sharp stick!

Just a minute, I’ve just got to get my list of things I want to talk about and cross them off as I go.....

Right,well, I spose I had better talk about Ady..

Poor sod had his steroid injection for all his aches and pains from the bones man (I can’t spell rheumatologist, so we call him the bones man). That lasted all of about 3 to four weeks, and the pain has come back worse than ever.

Ady says that he doesn’t want another one, cos although it eases the pain, it doesn’t do it for long and it messes with his diabeties,and also when it wears off, it is agony!

He has been a bloody nightmare over Christmas with his teeth. Because he had to have two pulled out, he has been waiting for his new plate to be made. What with fitting and wotnot, it has taken a good few weeks. So he has been using his old plate with not so many teeth on it. He has looked a right old gappy mess and especially because the front one kept snapping off, and no, it was nothing to do with my cooking, and so he spent every other day super gluing it back on! Thank God the new plate has arrived and he can put the glue away!

You remember that windy weather we had?, well, the silly sod decided to check the roof to the chicken house was OK, because Ady being Ady, decided that it might not be. I’m not too sure what exactly happened cos I was out at work at the time but he tells me he fell arse over bollocks and landed on a log. I will put a picture of his bruise at the end.

Charlotte took a picture cos I am useless with cameras and have been taking pictures without the card in the slot thing and I don’t know how to get the pictures from the camera onto the card. That is why I have been promising pictures and then not doing them!

So anyway, I am wondering if I should speak to our GP and get his Thyroxine dose lowered, or just do it anyway. That way, he will spend all day asleep and keeping himself out of trouble!

The next thing that worries me is that I had flu at 2.45 last Tuesday. It was gone by 7pm the next day. You can bet your fat cellulite ridden arse (thanks Dubs) that he will get pneumonia any minute now!

What a flipping shame,but I think my netball days might be finally over.

My ankle still isn’t right, and in fact, I think I have buggered up the other foot while compensating for my ankle.

Ady, the cheeky git said “Well, it will never get better with all that weight it has to carry”. This was a couple of weeks ago that I was moaning, and I haven’t spoken to him since. In fact, I even laughed when he showed me his bruise.

I can’t wear high heels at all now. Well, I never could apparently. I have been told that I walk like Dick Emery when I wear them, so perhaps it’s a good thing that I can’t.

Next week, we have the oncologists appointment. Oh blimey noras. It’s getting a bit scary now and Ady is not sleeping well at all!

But at least we will know what is going on and when radiotherapy will start.

The week after, we see the trials people to see if they are going to turn him into a menopausal woman and give him hormone therapy. God help us all.

At least we are still in the zero club J

The New Year

Well thank goodness. That’s Christmas and New Year out of the way for another twelve months!

I could sit here and merrily type about what a hideous year we had, and go on about all the crap that has been thrown our way and wallow in a pit of self pity and doom and gloom but that would be a bit false, because we don’t feel like that particularly...well, we have our moments, but tbh, not very often at all.

Personally, I like to think of life as one big learning curve. I think we are meant to learn lots of things on this earthly life, to prepare us for the next one in spirit....hmm, actually, I wont go on about that cos I might get carried away....some people think I should have been ages ago....carried away, that is...

Anyway, I have learnt lots about people and life over the last year.

I remember a while back,I wrote about our thoughts about cancer as a family, and I wrote about how it irritated and upset me when people ignored us. I really thought that it was mainly because they didn’t care, and couldn’t be bothered to use up emotional energy, but now, I realise that it really is because they just don’t know what to say.

If I think about it deep enough, in a way, I actually feel sorry for them, because they haven’t learnt enough in their life to know how  to deal with that sort of situation. So now, if I find someone ignoring me, I  run through in my brain the last conversation I had with them to check I hadn’t pissed them off unknowingly and if I am confident that I haven’t, then I go and talk to them. They are usually pretty relieved and we have nice chats about it all. Hopefully, they will then feel more at ease when they come across the next person affected by cancer.

Very few ignore us these days though I have to say, apart from those who dislike us or really don’t give a shit. Cancer generally doesn’t change people’s like or dislike of someone...you either like someone or you don’t. Simple.

Throughout the year, we have made some amazing friends. People who we have never met have really humbled us by the kindness they have shown. Friends who we didn’t think would be ‘there’ for us, have been in a massive way, and people who we thought we would be able to rely on, haven’t really been. I don’t think we have actually lost any friends, but we have made loads!

Families are no different in their behaviour actually. Ady and I come from large families. Ady has five brothers and a sister and I have six sisters and two brothers. Some of them, we don’t  hear from, from one month to the next (but I am sure they are ‘there’ for us before any family member is reading this thinking ‘ God, does she mean me?!?!’) and some of them are in contact all the time.

I spose it’s what makes the world go around and it would be very boring if we are all the same!

Everybody has their own lives to be getting on with, and their own woes to deal with. Talking of woes, that has reminded me. Another thing I have learnt is that a lot of people will talk about their problems, and then immediately feel bad, or embarrassed and say something like “Oh,I know it’s nothing compared to what you are going through”. Well, the way I see it, is that everyone has their own lives to live, and with that come its own set of problems, and they have to deal with those problems. Just because someone appears to have worse problems than yourself, doesn’t mean your problems are insignificant. All our coping mechanisms are different too.

Some people can’t cope with getting out of bed in the mornings and some people can’t cope with normal day to day activities. Some people wouldn’t be able to cope with cancer in the family, or a diagnosis themselves.

For me personally, I really struggled to cope with the whole benefits saga, much more so than the cancer. Other people would have found that a breeze. Or perhaps the whole benefits thing has sidetracked the cancer problems and the reality of it....time will tell I spose.

One thing I have never really been good at, is reading people face to face. I am not one for guessing games. I am one for saying it as it is and I find it most strange when people say one thing but mean another...what the bloody hell is that all about?

Or when people don’t quite give you the whole story...for gawds sake just say what you mean!

This last year has taught me to read people better, but of course now my problem is, that usually, if I don’t think they are saying what they mean, then I have to ask people outright what it is exactly, that they do mean. I usually tell people that their body language is disagreeing with their voice...

I think that people are also beginning to understand me and our family. They are getting our sense of humour and aren’t quite so horrified when we come out with outrageous things. I hope that for some people, it is teaching them not to be so judgmental and to accept that people deal with things differently. There is no right or wrong way. The right way is the way that is best for you and your family.

I have also learnt that Ady is much stronger that I have ever given him credit for. Yes, he has his doom and gloom days, of course he does, but I think a lot of people would have collapsed in a heap with two cancer diagnoses.

I don’t want to be too nice about him, cos that’s a bit gushy, but when I look back at what that man has been through over the last 12/18 months, I am a bit humbled to be honest.

There is no way I would put up with having someone shoving a bloody long tube up and around my colon, snipping bits off, and then having an operation to chop some of my colon out, millions of blood tests, then more tubes shoved up my arse, along with fingers up it, then bits snipped from my prostate (if  I had one), then my prostate chopped out and left with pissing problems, erection problems, unable to father any more children, and then sitting, waiting for the next set of treatments and wondering if I am going to sail through it, piss myself some more, shit myself or both. PLUS, he has to have a Brazilian for both surgeries!

Bless Ady, he has put up with all of that and more, very stoically. I haven’t even mentioned all of his other ailments or how the world tumbles down around you at the mere mention of cancer!

And then I think about our girls. Ady and I are so very proud of them both. The way they handle the whole situation is just so....I can’t think of a word, but you know what I mean. Mature, is the closest I can get to.

They are the most thoughtful, polite, well mannered girls. Dont get me wrong, they are right little shits at times, but there is this unselfishness about them.

Because of the range of emotions they have felt over the last year or so, they have really learnt empathy and how to see the other side of things. They are no pushovers either and will stand up for what they think is right.

Without my realising, the girls have been watching me battle with hospitals and governments and getting there in the end, and they have seen Ady getting on with it as best he can, and I think they have picked up that whatever happens, you just battle on, and it will be OK in the end.

Those girls have a much more adult approach to things than some adults. I don’t think their childhood has been robbed though, they have just had it a bit tougher than some children and instead of being hard done by about it, they are learning from it and will go out into the world much better, and well adjusted adults.

Our girls fill both me and Ady with such pride.

Right, that’s it for the moment. I will do another blog soon, but at the moment, I am so behind with my washing and ironing, I am being forced to wear my nicer posh clothes cos I have run out of everything else and people keep asking me if I am going out anywhere nice, or they will say “Oh where have you been, you look smart”..cheeky buggers!