The Zero Club

Zero Club

There is SO much that has happened over the last few days, that I will separate everything into two blogs because this one needs a bloggette all of its own.

If you have been reading this all the way through, you will know that our lovely neighbour came last Thursday to take Ady’s blood for his post op PSA test. I then need to ring on Monday afternoon to get the results ready to take with us when we see the oncologist on Tuesday afternoon.

Well, our super, smashing, great, lovely wonderful GP got the results through on Friday afternoon. Instead of thinking to himself ‘hmm, they can find that out on Monday when they ring cos I am a busy man with lots of patients to deal with’, he took the trouble to ring Ady. He said “I thought I would let you have a nice relaxed weekend and let you know that your PSA results are back and that they have come in at under 0.1” Ady being Ady, rang me and told me what was said, and asked me if that was a good thing *rolls eyes and sighs*...blimey has he not learnt anything throughout this whole saga??

I told him that yes, it is a bloody good thing, and something I don’t think anyone has expected at all. It means that at the moment, the cancer is undetectable. I then told him off for not concentrating in lessons with consultants and when I am reading bits to him from my bible (Patrick Walsh’ guide to surviving prostate cancer, not the Lords bible...I’ve read that one before and he dies in the end....jus’ sayin’).

Anyway, Ady said his job is to be the patient with cancer and my job, as High Command, is to understand it all and organise everything. To be fair to him, he does listen really, but I think sometimes, it can be very overwhelming when you actually have the cancer doing its thing in your body and you are trying to understand it all, whereas I can emotionally remove myself from the situation while I am trying to understand it all. I think that that is the key when you are googling, reading and listening to information, to remove yourself emotionally so you can listen to ALL that is being said or written...the good and the bad....

I am not saying that I am detached emotionally from the whole thing...far from it...this is one hell of a nightmare ride, but I try and approach meetings with the medics with a more detached and business like mind, if you know what I mean. There is no point wailing all over the floor in desperation and panic, and taking nothing in apart from words like ‘cancer’, ‘it’s spread’, ‘stage 3b and ‘oncologist’...I like to have my folders, charts, lists and nonograms with me. A girl guide is always prepared!

So, when you join the Prostate Cancer Club, the main aim is to try and get your PSA count to an undetectable level or <0.1. Once you are there, you can then join the zero club. But be careful, cos you can get chucked out at any time!

Some people are in the Zero Club for years and some for a few months. Some never get to join the zero club at all. The non zero clubbers spend their lives battling to get their PSA as low as they can to keep the cancer at a contained level. I will talk more about that if we get chucked out of the club.

I really do hope that we stay in this club for years and years. Generally, men who have had surgery and the cancer is contained at stage 1 or 2, with no seminal vesicle involvement, extra capsular extension or positive margins, tend to enjoy life with the zero club brigade.

In Ady’s case, he had a high starting PSA, seminal vesicule involvement, positive margins and extra capsular extension. We are very well aware, that our affiliation to the zero club may be short lived as he is at high risk of recurrence. It also may not!

Have the remaining cancer cells been destroyed by the trauma of the surgery?

Can the remaining cancer cells survive without being fed by the prostate gland?

Have they matured enough to survive on their own?

Are there micromets hiding in his bones somewhere, not creating PSA yet and undetectable by scans?

Is the cancer lying dormant, ready to become active in years , months or weeks?

Or has all the cancer gone?

I have lots of questions for the Oncologist tomorrow when we discuss if radiation is the way forward, but for now, I saw this quote which I think is very apt.

“Be happy for this moment. This moment in your life” – Omar Khayyam

I KNEW It!

Do you remember my blog about my serious accident I had while on piss bag duty? You know, the one where I bloke all of my bones, with blood and guts everywhere?. The one where I got NO sympathy...none at all...none....?

Well, I knew I should have had SOME sympathy, because the other day, on my toe that was particularly painful, my toenail came off. Not just the end of it, but right from the cuticle! I KNEW I had hurt myself in a very serious and grave way but I have struggled on regardless...without sympathy or a limp.

The temperature seems to have dropped a bit lately, but thanks to Sue and Jennie, we are lovely and warm with our open fire. The heating only comes on when the temperature drops below 17 degrees so the rest of the house is not too freezing. It’s a bit like rugging horses. If you rug them too heavily or too early at the beginning of the winter months, then they will feel the cold more easily when the real winter gets here, so you have to pile more rugs on to keep them warm. Start with the heating down low, get used to it and when the really cold weather gets here, you don’t have to turn it up too much!

Yesterday, the postman arrived with a bubble wrapped envelope addressed to me. I thought to myself, hmmm, I haven’t ordered anything, how odd. I opened it, and inside, was a really lovely little guardian angel!

I love all things angelic, crystal, spiritualistic and homeopathic, so what a really lovely and thoughtful gift.! There was no note or clue as to who sent it to me. I would love to thank you in person, whoever you are, but you will have to let me know who you are so I can!

My angel is hanging in our dining room (the room mostly used) and is guarding our whole family J Thank you so very much !!

Now, I can’t let a blog pass by without mentioning piss, as this seems to be the hot topic of discussion in our house these days!

I noticed that the bathroom floor had been mopped the other day. I thought to myself,’ bimey, I must be losing the plot here, I don’t remember doing that!’

Ady then told me that he was sat on the loo earlier having a poo and wee. While he was doing his...erm....stuff, he looked down and thought to himself ‘where the bloody hell is my piss going?’ and then he realised that he had pissed all over the goddamn floor!

Ive told him that he has no control over that thing anymore, and he will have to aim better and concentrate on where it is pointing! He just laughs and says how unnatural it all is...too bloody right, I say.

Ady is OK when he is concentrating on his continence, but when he sneezes, he pisses himself and when he coughs he pisses himself, and when he laughs too much too.

The other day, Ady and I took the primary school kids for their first football and netball match. He found that he was concentrating so much on what the kids were doing, that he forgot to concentrate on himself, and realised that he was dribbling constantly!

It’s really good for Ady to get involved and coach the boys. He loves it and it builds his strength up and takes his mind off his cancer for a while. Even when they do lose 5-0 and my netball girls win 9-1 !!

I am very pleased to report, that it has only taken about a week (they told me two) for the council to write to us and award us council tax benefit for the full amount. In the letter, they even said that they were pleased to award it!

Full marks to Kent County Council for polite and helpful staff with efficient service! Perhaps the benefits people should take note, cos I haven’t heard back from them since I sent in my accounts the other week!

Our lovely neighbourly district nurse has been round this morning to take Ady’s blood for his first post op PSA test. The waiting isn’t too long, we will get the results on Monday afternoon, in time for the oncologist on Tuesday. Our fingers are firmly crossed that it comes back at 0.1 or under. That will mean his PSA is undetectable and no further treatment for the moment. If it comes back as detectable, well.....lets cross that bridge when we get to it.

Just one last thing before I go.

We have been so busy with piss and prostates, we have completely forgotten to worry about crap and colons!!

It is a year since Ady had colon cancer and today was his CT scan to check it hasn’t come back. In fact, it was this time last year, that we were rejoicing about Adys first poo and being allowed out of hospital!

We trundled back to the new all singing all dancing hospital. I know I have said that I will be by Ady’s side every step of the way, but it is bloody boring sitting there for two flaming hours, so I did sneak off to Costa Coffee down the corridor. I won’t be doing that again with those prices...I will take me a flask !!

I’m not sure how we get the results so I shall make enquiries.

He also has to have a vat of blood taken next week. One of them is a fasting one, so no food for 14 hours or something like that, I will have to see what the letter says, and also his DMARD for his arthritis, the one for his colon cancer and one for something else...Oh I am sure they have it all written down!

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

PissPadLane,

IKnewIWasInjured,

LastYearWasPooThisYearItsPiss,

GettingThere

TankeyTown.

Buggered Again

Over the weekend, I spent most of my time googling bits of the pathology report and reading Dr Patrick Walsh’s ‘Guide to Surviving Prostate Cancer’ book, which incidentally, has now turned into a bible.

I wrote down lots of questions and things I wanted clarifying to make sure I understood what I was reading.

Our appointment was at 12.40, so plenty of time to drop the girls at school, check on Betty and Brian (my elderly people I look after), go home, change clothes and have a coffee before setting off to the hospital.

Well, I was just on my way from Betty’s to Brian’s when Ady rang. Sarah, the uro nurse rang to ask if there was any chance that we could come in early, as in now, because Mr D (our surgeon) had to go somewhere else at lunch time. “No problem”, Ady happily said, “I will phone the wife and get her to come and bring me in”. So poor Brian got a very short visit today, but he was great and understood. He was also more than happy that I promised him fish and chips for lunch!

We got to the hospital (whoever designed the car park, needs sacking) and went straight in to see Mr D.

Mr D is a very nice man, very down to earth and tells it as it is. We very much like that cos we don’t like guessing games.

I can’t remember if I mentioned this after Ady’s surgery, but he complained of a very sore arse (as he has done over the months) and was barely able to sit....SIT, not shit *shakes head*

Well, Mr D said that his surgery was a challenge because of his previous colon surgery. The back of the prostate was stuck to the colon wall with lots of scar tissue and he had a bit of a time cutting it away. Mr D told Ady that his assistant had to spend all the time in surgery with his fingers up Ady’s arse trying to push against it, to make sure Mr D didn’t cut into the bowel!

“So you were buggered for hours Ady, and my assistant got cramp after 3 hours” (you need to read that in an Irish accent). Me and Ady rolled about on the floor laughing and at least that explained his sore arse problem.Christ, you can just imagine, poor Ady on the table, tilted upside down with some bloke standing there with his fingers up his arse and Ady’s legs in stirrups!

Mr D also showed the picture of the leak from the urethra and explained why he wanted the catheter in for another week and he went through the pathology report, explaining everything.

He has said not to worry about the seminal vesicle invasion or the extracapsular extension as it could be more invaded than it is, but the positive margin is of slight concern. Around the back of the prostate where he had trouble cutting, he couldn’t get a wide enough margin and so that is where the positive margin is.

The post op PSA test is supposed to be 6 weeks after surgery, to allow the body time to get rid of all the PSA in the blood. It should come back under 0.1 which is deemed undetectable.

Because we are seeing the Oncologist on 25^th October, he has suggested that we get the PSA test done a week early, ready for the Oncologist to see. Apparently it will save a lot of faffing around...That test will be 5 weeks after surgery and if it comes back at 0.1, then we are OK and no need for another test straight away, but if it comes back higher, then to test again a week later so we are on the 6 week marker.

Now, if the PSA is detectable, then there is no discussion and radiotherapy will be given, but if it is undetectable, then the oncologist will offer Ady to go on a trial called Radicals. He may not be eligible for the trial because it involves radiotherapy and because he has had colon surgery right where they will want to blast it, it may damage him when he doesn’t need it yet (you may want to google Radicals trials to understand what I am on about). He may of course, have to have radiotherapy if the PSA is detectable, in which case, he will have to chance his arse again.

I asked about stage 4 with mets and lymph nodes. He said that they don’t know if his lymphs are free of cancer and he could also have micromets in his back or somewhere that they don’t know about yet, and as we have found out, the MRI didn’t show the spread he had. It will be a rise in PSA that will indicate further growth.

Anyway, in all, Mr D was very pleased with the way surgery went under the circumstances, and now I think we are on a wait and see mission.

We then went and saw Sarah, our new uro nurse who is lovely and she is very pleased with the way Ady is peeing. He is managing to stay pretty dry, and telling people that it’s not normal living in a grow bag. He is absolutely determined to get continent again!

We have decided not to battle about incontinence pads and we will just buy our own.

On our way home, we dropped off at our doctor’s surgery to see if we could get a PSA test in for Thursday. I left Ady in the car and popped in to see the receptionists. I explained the situation and they said that they would have to create room. I then had a brainwave and suggested that perhaps the community nurses assistant, who happens to be my neighbour and takes the blood, might like to pop in on her rounds and take it at home. That was thought to be a great idea, so I rang her and she said yes. Then our lovely GP came along and said hello. He agreed about the blood and all is set. I have to blood bag thing with me ready. I do like our new surgery!

Lovely GP man was asking how Ady was getting on, and we were chatting about today with Mr D and the upcoming Onco appointment and generally how we all are, when he pointed to a leaflet asking for patient reps to have a meeting with the doctors to see how they can improve their services. He said “I know you probably have enough on your plate, but you might be interested in this”. I looked at it and said “Oh what a good idea, I could be up for that if it helps”

“Well, he said, it would be nice if you put your name down for it because we usually only get....erm......posh”....Before he could say anymore, I interrupted with ”Are you saying I’m common?”As I glared.

“Oh no!, I meant old people of that type and it would be nice to have someone young”

“Oh” I said “Well if you are calling me young, then count me in”

The receptionists were giggling away at what must have looked like the beginnings of a Catherine Tate moment.

I think our lovely GP might be getting my sense of humour, which I have been told is an acquired taste, because he laughed at me today, but the other week, my mention of selling Ady’s Viagra on the black market, went straight over his head!

That’s it for today, I think. The winter netball season has started and so I am off out tonight to pull a few ligaments...hopefully not my own though!

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

Prostateless Lane,

PisslessShire,

GettingBetterAndEasier,

Anxiety

PSA

Snorkels and Flippers.

The day finally arrived for Ady to have his catheter removed.

Charlotte asked me today “mummy, what is the name of dad’s piss bag? Because when people ask me how he is, I don’t know what it’s really called”..bless her. Ady piped up, and said “It doesn’t matter anymore, cos I haven’t got a piss bag, i’ve got a piss pad now”....flamin ‘eck lol.

Anyway, I got Brian up at the first sparrows fart, sorted the girls out for school, organised Ady and off we went. Dropped the girls off and went on to the hospital for 8.30, not knowing really what time we were supposed to be there.

We had our letter with the bar code, so we were able to zap ourselves in on the machine. We then took our seats, ready for the long haul wait. About 10 minutes later, Adys name went up on the screen telling him to go to zone two! Bloody hell, we thought, that was quick, and off we went. We sat down in zone 2 and then we were called to sub zone b or something, so a few more corridors later, we were at the catheter removal department.

Here we finally met Annie. Now, I need to say that earlier in my blog somewhere, I think I was a bit negative about her and thought she had a bit of a vacant, harassed and uncaring attitude. Well, I take all of my words back because she was lovely. She was good at her job, efficient, reassuring and caring.

She did ask me if I thought she was a bit off and vacant when we spoke on the phone about Ady’s scan thing being clear. I told her that I have to be honest since she has asked and yes, I did think she was a bit of a miserable old bag. ..well, she did ask......

Annie laughed and apologised. She explained that by the time we had got home from the scan and rung her to say it was all clear, the scan doctor had got another doctor to look at it, who wasn’t happy and they sent it to the surgeon who said there is a leak and to keep the catheter in for another week. Annie, had just got off the phone to the surgeon and answered the phone to me saying it was clear. She was very confused and wondered if she had got things muddled, which was why she was the way she was with me on the phone.

I do like a bit of upfrontness and honesty sometimes. It usually clears up misunderstandings that can happen, don’t you think? J

Annie explained what she was going to do and got a bottle ready in the toilet, with his name on to piddle in. He then had to take his bottoms off and put some net knickers on and a pad. We are not talking a small pad here, but a big bugger that goes all the way up the front and back!

Ady being typical Ady, squidged the pad in his new knickers so the whole thing was creased and wrinkled and half inside out. He stood there quite happy with himself and me and Annie just looked at eachother. “For goodness sake Ady, you’re not at the farmyard now!” Me and Annie straightened him up to look much more presentable and Ady just chuckled.

I told him how he can now know what it feels like to have a period and what us women go through each month.

Ady laid on the bed and while they were chatting, Annie removed the catheter. Ady said that he felt a slight burning sensation, but it wasn’t too bad (personally, I would have probably screamed).

We then had to go off and he had to drink 2 bottles of water and a coffee in the cafe before coming back for a piddle test.

Before we went for our drinks, Annie was looking through Ady’s notes. I asked her if the pathology report was in there. She said she wasn’t sure and I said what a shame it was cos I would love to have a copy and explained about the onco letter. She said she would have a look. I wasn’t very hopeful that I would get it.

We wandered off down the corridor, and as we were walking, Ady was saying (not very quietly) bloody hell, I can feel that I am pissing myself...christ, it just keeps coming out!!

“Do we need to buy flippers and a snorkel on the way home?” I said

“Ooh, I dunno Em, we might need something if this carries on!”

We got to the restaurant and sat down with a coffee. The nurse told Ady that when he is sitting or lying down, he will possibly be OK, but as soon as he gets up, he won’t be. She was absolutely correct, and Ady stopped piddling when he sat down.

We drank our drinks and wandered back to Annie. The moment he stood up, Ady announced in the restaurant that he was pissing himself again but it was OK because he was managing to hold it he thought. He wasn’t sure, cos everything was a bit wet down there, but he was doing his best. I said to him “Just hold that piss and let’s get you to a loo”. We went out of the restaurant, not really caring that we had probably put most people off their breakfast, sod it, we were having a crisis!

Ady managed to get back to Annie’s loo, whip his trousers, pad and net knickers down, and with piddle leaking everywhere, managed to get some in the bottle....on the floor, down his trousers, on his hands and on my hands....I don’t know why, but we found it all rather funny!

Annie scanned Ady’s  bladder and said he hadn’t emptied it enough and it was still half full, so he went and emptied it some more. While he was in the loo, she gave me the pathology report!

We were told by the other uro nurse that Ady was a stage 3 with a positive margin and nothing to worry about and that we would be seeing the onco to discuss Radicals trials. The actual report gives a slightly different story however. You might want google here, if you are interested, but here is what the main parts of the report said:

Gleason score: 3+4=7

Tumour size:22 x 18 (horizontal)

Surgical margins:

Urethral: clear

Circumferential: involved (3mm diameter) posteriorly and on the left.

Bladder neck: clear

Extracapsular tumour: present 4mm in diameter, 2mm depth left seminal vesicle.

No nodes taken.

Summary:

Invasive prostatic adenocarcinoma

Gleason score 7

Stage pT3b

Surgical margin: Positive

I gather that if the nodes are found to contain cancer cells, then he is a stage 4. There is no stage 5.

We have lots of questions for the surgeon and the oncologist. Even though we were not happy about getting the onco letter, it has given us time to digest this news and prepare questions. Something we wouldn’t have been able to do if we hadn’t got the letter, so every cloud ‘n’ all that!

Meanwhile, Ady is wandering around the house with his pad and tracky bottoms on, asking if his bum looks big in this. I have told him, that a fat arse, will look fat in anything. We all have to check with him before going to the loo because you can bet that as soon as you sit down, he will start shouting “ Loo...Loo, I need a piss, get out of the loo before I piss myself!”while he is banging on the door.

We have been warned that Ady has to be pissing himself in a serious way to qualify for free piss pads. I have warned them back, that I have the mobile number of the chief exec of the PCT and I am not afraid to use it lol

I won’t shout too loudly, but Ady managed a piss free night last night, even though he was wearing Boots pull-ups and I had put bin liners under the sheet. Hopefully, he will improve with each day and I won’t need to ring the PCT. Everything is a bloody battle in this game.!

The operation has made Ady’s willy as dead as a dodo and has visibly shortened in length. He says that wearing a pad is like being in a grow bag, and he says that you never know, with any luck,his willy might grow back to its original length. I tell him that his urethra is in the bin and it’s never gonna grow again.

Our cancer bus journey has turned into a roller coaster ride. Not just any old roller coaster, but one of those big bugger American ones!

Fooking Forms

I haven’t written lately because I found myself stuck to the ceiling since we opened the letter from the oncology department.

Ady, however, slipped into a pit of doom and gloom and the girls took the whole thing on board and just carried on as normal.

We have now picked ourselves up, dusted ourselves down and we are ready, as a family for the next battle!

When I was on the phone to the uro nurse about the onco appointment, I asked her why we had to wait 5 weeks to see the surgeon. She said “Oh well, that will be because we knew that Ady’s urethra had a leak and he needed it in for another week”. I told Ady that she had said this, and he replied that she was talking bollocks (his words) because we got the appointment for the surgeon on 26^th September and he had the cystogram on 29^th. So unless they have a crystal ball, they would have had no idea whether he had a leaky tube or not!

A few years ago, my stepmother (who talks constantly without coming up for air) was doing her usual talky bit and my dad was sitting there silently (he was a man of few words). Anyway, she was going on and on about something she felt needed saying and then my dad looked up from his newspaper and said “People who talk nonstop all day every day talk shit, and that’s a fact”. The room went silent for a moment and he went back to reading his paper. It bloody cracked me up !

The conversations Ady and I have with the uro nurse remind me of that time in my dad’s sitting room.

Saturday came, and so did the postman with a couple of letters. I have never much liked brown enveloped letters, and funnily, these days, I am beginning to hate them and get palpitations when I see the postman walking down the road with them in his hand for us.

The first letter was from Atos. These are the people, who when you claim ESA, need to check to see if you really ARE ill and can’t work. Bless them, they had included a 20 page form for me to fill out. They can make you see a doctor if they want or don’t believe you and he will assess if you are fit for work.

The form asked questions like, how far can you walk? The length of one double decker bus or two? And can you sit for more than an hour?..can you pick up a pencil?...that sort of stuff. I filled it out straight away, and I got to the question where they ask you to give dates of all your hospital appointments over the last three months and the next three months. Well, the flipping box was only about 2 inches big, so I wrote in it that there was not enough room. I then found and photocopied 19, yes, that’s not a mistake, nineteen, appointments that we have been to over the last 3 months and are going to over the next 3 months. So even if they deem him fit for work, which they had better bloody well not, they will probably think to themselves, the poor bugger doesn’t have time to work with all those appointments!

I got them all and folded them nicely and shoved them in the envelope...I made it fit and sellotaped it down. They will have to pay the extra postage if it is too thick to fit in the royal mail slotty thing. I am pissed off with all these bloody forms...I will be off work myself soon with writers cramp and RSI !

The next letter was from the benefits office. Although I had sent them our accounts which have been submitted to the tax office for the year April 2010 to March 2011, they now want an itemised breakdown of all my sole income and expenses for my business side of things....Oh dear bloody God alive! *sigh*

I don’t think that as long as I live, I will understand the relevance, between my income 18 months ago and what is happening now. I can only assume that they thought that that is the only thing I would be able to provide.

I spent the rest of the weekend being really pissed off about it, and pissed off that I will have to spend the day sitting at my computer, trying to work out how to do excel formulas and how to set it all out and ploughing through bloody spreadsheets with all our joint stuff in.

In the end, I decided that it would be much better to give them the last six months accounts of my sole earnings and expenses, which would give a much better picture of what is happening now, and I would give them either an estimate of the next six months or a set in six months time.

On Monday, I put on some nice clothes and my posh voice, and tottered off to the council offices...well, I don’t want them thinking I am a benefit scrounging chav do I !

I had filled out the form for council tax benefit. I sat with a nice lady who went through all my stuff I had brought. I had pretty much brought all they wanted, minus a couple of bank statements and Ady’s signature on the form so I was pretty pleased with myself....until the lady produced a self employed earnings form for me to take home and fill in. She also wanted a set of accounts for the last 12 months....Jeeeesus bloody noras. I smiled sweetly and took the form home.

I cancelled my work today, so that I could concentrate on getting some sort of closure on all these forms...once that is done, perhaps I might be able to concentrate on the real matter of my husband’s cancer and my children’s well being and keeping our family together and strong.

We are very lucky to have a friend call Gill, who is an accountant. I am crap with excel spreadsheets and formulas, and the very thought of having to produce a set of accounts, all properly worked out, has filled me with dread and anxiety.

Gill said that if we needed help with anything, then to just ask. So I did.

I had done all the income and expenses, but I hadn’t added them up or done the business percentage, or put them in any sort of order.

Gill happily agreed to help me out, so I emailed the document thing to her and rang to check she had got it. While we were on the phone chatting, she had done the whole lot, all added up, percentages done, with nice borders and everything, emailed it back, all ready to print....bitch. Don’t you just hate people like that!!

That would have taken me at least two days of bad moods, hair pulling and feet stomping, and it took her ten minutes! Thank you so much Gill, you have helped no end !!!

So, I have a set of accounts that have been sent off to the benefits people this afternoon, and the Atos form has been sent the other day, so now all I need to do is go back to the council tax people with the other set of accounts and the form they gave me (I am not sure why I have to fill the form out because all the info they are asking for is in the accounts, but hey, what’s another form between friends!) and then I think...I am done with forms......

Until of course when we apply for DLA (Disability Living Allowance), however, I think I will be asking Macmillan to help me with that one because I am worried I won’t be able to stop myself taking the piss when writing the answers because I have heard that that form is about 745275727572 pages long with repetitive questions.....hmmm, someone sensible will need to fill that one out!

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 life...it 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 25^th 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,

FinallyGotOurMoney,

WhatABloodyShambles,

DontKnowWhatToDo,

PissTown.

C'est La Vie

Last Saturday, Ady invited our friends round for the evening. We usually do this once every so often and we play cards or Tripoli and eat take aways, oh and drink plenty! This Saturday was no different and there were plenty of laughs and jokes about Ady’s bag situation, wind problems and the rest. It was really nice to see him doing real belly laughs towards the end of the evening when he demonstrated his wind problem, blaming it on the small bite of hot ‘n’ spicy chicken wings he had earlier!...toilet humour, that one!, but it was a brilliant relaxed evening as usual.

Ady didn’t drink that evening, in fact he doesn’t drink at all really, it would play havoc with his tubes!

On the Sunday morning, I got up early to get some jobs done before everyone else and I heard a thud upstairs. I assumed it was Charlotte because she can be quite heavy footed, so thought nothing of it.

Ady then came downstairs and said “Didn’t you hear me?”

“What?” I said,

 “Well Ive just fallen out of bed!”

“What did you do that for?” I asked. It turns out that he was having a dream about trying to punch someone, or grab them, he can’t remember. So we went to punch/grab them and did the physical movement in his sleep and promptly fell on the floor, landing on his night bag stand and breaking it!

So now the night bag is taped up with masking tape to hold it together. “Never mind” I said, “You only have a few days left of your bag, so we will have to make it last”.

When the letter came about removing the catheter on Tuesday, I can’t remember if I told you that I thought ‘great, in hospital by 8.30, catheter out and home by about 9.30. Well, the letter said that we have to stay there until about 1pm *yawn*. So, I spent most of Sunday trying to get people to cover my work on Tuesday. Brian (A man I look after) needed a shower that morning cos he was having his haircut and I needed my lunch duty covered at school. Lunch cover was no problem, but no one could cover Brian, so I planned that I would shower him at about 6.30 in the morning, pick the girls and Ady up at 7.30, no later, and they were to be ready and waiting with bags, lunches, dance stuff, p e stuff (which I would make sure is organised, they just need to remember to pick it up) for me on the pavement so we could drive straight off, drop the girls at school and go on to the hospital amongst the morning rush hour traffic to be there and parked for 8.30.

A bit of a squeeze, but doable if I get up about 5am.

On Monday morning,Ady  had a doctors appointment, so I was up and pottering about early, doing packed lunches and drinking coffee. Ady called me from the bedroom. I went upstairs to see what he wanted.

 He had left the night bag tap on open, and had  bloody well pissed all over the floor! It was everywhere. He even dipped the duvet in it!

The girls were in the middle of getting up and using the bathroom and Ady was standing there with piss bag in one hand and sopping towels in the other. Oh. Dear. God.

I cleaned it up as best I could and told Ady to sort his bags out and get dressed ready for me to pick him up after the school run and I would deal with the rest of the piss on the floor problem later because he can’t run around with mops and buckets in his condition and I didn’t have time there and then.

“Don’t worry” I said, “Its coming out tomorrow!”

We went off to the doctors and had a good chat with him about the goings ons and wotnots. Our GP was only too pleased to give Ady his prescribed Cialis.

 Ady chuckles that this is what the medics seem most concerned about! The bad news is Ady, that you have cancer, but fear not, the good news is, you can still have a shag....We picked up the tablets, all eight of them, and noticed that they expire in 2014.....”They should last you” I smiled.

Ady said “Do they not understand that I have had cancer twice resulting in 2 major surgeries within a year and that getting my leg over is not on the top of my list of priorities?”

We had a good chat about it and decided that for some men, it must be a ‘man’ thing. For Ady, he just wants rid of the cancer and is happy to be alive. Which reminds me, we mustn’t forget to worry about the forthcoming CT scan for the bowel cancer!

Ady worries that because he is concentrating on the prostate cancer, that the bowel cancer is going to sneak up and bite him on the arse when he least expects it.

I think, blimey, look at all that time we haven’t given the bowel cancer much thought, it just shows you how worrying achieves nothing....but sometimes, of course,  you just can’t help it.

Yesterday, I was cooking tea for us all, a roast as it happens, kindly bought by Mary when she did me a Tesco shop last week.

Ady was having a sleep, and the girls were on their way home from school. I was making the apple crumble, thinking to myself, wow, I am such a good cook, they are going to enjoy this dinner, when the phone rang. It was the uro nurse. Let’s call her  Sam ...

“Hi Emma It’s Sam from the hospital”

Oh hi Sam, how are you?”

I’m fine thanks.....erm...” small silence...

“Hmmm,are you phoning to cancel tomorrow?”

“Erm,......yes”

I laughed.

It turns out that the doctor who did the cystogram thingy last Thursday and said it was fine with no leaks, showed it to another doctor a few days later, who said it was not fine and there is a small leak. So they then spoke to our surgeon who said to keep the catheter in for another week and then take it out.

Ady is wandering around saying “This isn’t natural, having a bloody tube coming out of the end of your willy...just not normal at all”

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

Prostateless avenue

FrustrationLane,

PissInTheBagAndNotOnMyFloor

WishTheyWouldMakeTheirMindsUp

WhereAreTheGoddamnBenefits

Illegitimi non carborundum