The Letter

It is with regret, that I am forced to write this letter of complaint.

My husband Adrian was diagnosed with cancer in August 2010. He was given a sick note from his GP starting in September 2010 until March 27^th 2011. During this time, he had surgery to remove the tumour. As he had open surgery, his recovery took a few months and we therefore claimed ESA.

The staff I spoke to were very helpful and as we are both self employed and I had to take a cut in hours to care for him, we were advised that our claim should be an income related joint one. We did this over the phone. In March, though my husband was still clearly unwell, he felt so uncomfortable about claiming benefits, that he returned to work as he wanted to provide for his family. I was told that Adrian was entitled to the ‘back to work benefit’. The chap I spoke to told me that if we were entitled to it, then we would get a letter. I heard nothing more, so assumed we were not entitled. I since find out that actually, we were!

In June 2011, Adrian was diagnosed with another, different cancer. Completely unrelated to his colon cancer. He managed to keep working until 15^th August 2011 when he was forced to stop.

I phoned the benefits office on the 0845 number and was told that I could not do the claim on the phone again because our old claim was still on the computer system, but not to worry, we could do a ‘rapid reclaim’. It was explained to me that if you are claiming ESA within six months of your last claim, then you can do the ‘rapid reclaim’. The man I spoke to was sending me the forms.

The forms arrived in the post, and they were the usual ESA forms. I expected something like ‘Rapid Reclaim’ written on them .

I phoned the 0800 number to check I had the correct forms. I was told again that we could do a rapid reclaim and the reason we had the same form was because we are self employed. The lady suggested that I wrote ‘Rapid Reclaim’ on the front of the form, which if you have a look, I did. I even wrote in one of the boxes on the form asking if this was correct!

Adrian was admitted to hospital for surgery on September 14^th and we had heard nothing from the benefits office.

I phoned and asked how things were progressing. I was told that they had received the form and were dealing with it and to phone back in a couple of days. I did and was told the same thing, and then again.

I then phoned a lady one morning who was particularly rude, especially when she asked “Well why did he go back to work in March then”...I remember her exact words and tone. I explained that he didn’t have cancer then, but has since been diagnosed with another one which is why we are claiming again.

I rang later in the afternoon to see if I could get someone a little more helpful, which I did. She explained to me that I had not been given the correct information and that we were not on a rapid reclaim at all. She told me that we could only do that if we were claiming within 12 weeks of our last claim. The six months bit is for those who have been turned down for ESA, they can’t claim again for six months.

Can you imagine my dismay and frustration at being told that? Not only was I having to look after my husband and his incontinence, my two children, hold the family together and try and work myself, I had to deal with being given totally the wrong information and rude uncaring staff!

I was then sent a letter asking for a set of accounts of my trading for last year. Why? You already have that on your computer system! Even one of the staff I had spoken to thought it odd.

I thought I would be helpful and send an up to date, relevant set of accounts from the last six months. I even calculated the percentages of each expense for personal and business use and put the figures down for you.

I sent this on 11^th October. Why has it taken over six weeks for the decision makers to decide?

I have phoned the 0845 number every other day to try and get answers which no one seemed to know. All I had been told is that it is with the decision makers, but it’s OK Mrs ******, you can apply for a crisis loan.

Why, oh why, would I want a crisis loan to get myself and my family further into debt because of the slowness of staff? Being self employed, it would have to go to decision makers again. No thanks!

All I have been offered is for someone to call back within three hours every time I make a slight fuss and where does that get me? Absolutely nowhere!

Did you know, I have been getting call back weekly for the last eight weeks?

This has been going on for OVER THREE MONTHS!

Even though I have felt like screaming out my frustration down the phone to staff at times, I have remained calm and polite with EVERY call. It is a shame some of the staff cannot afford me the same courtesy.

I understand that they have to listen to peoples woes every day, and I understand that to some of them, it doesn’t matter if my husband has stubbed his toe nor has cancer. Well it does matter to me!

It has cost me a fortune in phone calls over the last three months.

The stress this has caused is huge. Adrian has suffered hugely and has become quite depressed over it. His recovery has been completely hampered because of the worry and anxiety this has caused him. He has been in tears over it...a grown man!!

Instead of my being able to look after him and the children, I have had to spend my time on the phone, battling away through misinformation and rudeness.

It has taken on average 30 minutes to get through on the phone each time, and each time, I am phoning an 0845 number!

Last Tuesday 21^st November, I phoned yet again after not even getting through the day before. I was promised yet another call back and this time, I asked to speak to a manager. Well, guess what, not only was my call back over 4 hours so I had to ring again to ask why I had not had a call back, when I did eventually get the long awaited call back, it wasn’t a manager. Did you not want to speak to me?

Luckily, the gentleman who rang was very polite and apologetic at the three month delay and my lack of call back.

I am told that the decision makers made their decision on 21^st November. Today is 29^th November, over a week later and it is STILL sitting on some ones desk waiting to be put into the computer. How long will that take?  Your failure to deal adequately with this claim has resulted in our being unable to claim our mortgage interest payments.  This is simply outrageous

I have been considering going to my local press with this whole debacle, but I will await your reply and course of action first.

Regardless of your reply, I will be writing to David Cameron and his associates to suggest that he stops making staff redundant and trains the staff he has left, on the finer points of the benefits system.

The system is supposed to be there as a safety net for those in need, and the one and only time we have needed it, it has failed us miserably, while those who are career claimants, appear to sail through the system with money and help being thrown at them from all directions.

I feel that as a hard working, self employed, married couple, bringing up our children in a secure environment, we are being actively discriminated against by the benefits office. My husband has two unrelated cancers. This is not a lifestyle choice for him – anything but.

 Therefore I am requesting your immediate response on the decision regarding our claim and secondly compensation for the delay in dealing with our claim, compensation for the expense I have incurred in phoning and writing to you, which a call every two or three days over the last three months and sometimes twice daily, I estimate is likely to be in excess of five hours, and compensation for the distress your maladministration has caused.

I await your immediate reply.

Yours Sincerely

Mrs Emma ******.

Cc. My MP

The Gloves Are Off.

This whole benefits saga is getting me very down so excuse me while I have a bloody good rant.

*big breath in*

Oh, actually, I can’t be bothered. I feel worn down by it all. I was tired of fighting them every step of the way and getting nowhere. Tired of phoning every other day to be put on hold endlessly and eventually speak to someone who doesn’t know what they are talking about half the time.

Tired of worry about the girls, Ady, money, work, the house and all the rest.

With everything going on, why should I have to battle with the benefits office. Its not our fault we are in this situation. We didn’t ask to be. We don’t want to be either.

You would have thought that the benefits system is there for those in need. It doesn’t seem to be for us. I have done everything they have asked of me and more, why can’t they sort it?

How do they expect us to live?

I tried to call the other day and ended up on hold for over half an hour. I ended hanging up.

I was so furious about it that I ended up shouting at the children and Ady and taking it all out on them. I immediately felt terrible about it as it isn’t their fault and it isn’t my fault. It is the situation  and pressure that the benefits office are putting us under.

This is more stressful than the cancer and what is to come with that..far more stressful actually.

I decided that the next day I would insist on speaking to a manager as this simply can’t continue.

I rang at 9am and got straight through. I spose all the dossers don’t get out of bed until lunch time. Silly me, I should have rung early sooner.

I was promised yet another call back within three hours and this time it would be from a manager. Three hours came and went, and no call. I was bloody furious so I rang again to ask where my call back had got to. I was them promised a call back within an hour.

Four hours later, I got my three hour call back, but it wasn’t the manager, what a surprise. The man, who was very nice and understanding, told me that the manager had asked him to call me to make things better. He told me that the decision makers had decided that we could have the benefits and that our claim was sitting on someone’s desk waiting to be put into the computer so it could tell us what we are entitled to.

He told me that we will be hearing very very soon and agreed with me that it is an appalling state of affairs.

Well, over a week later and still nothing.

I am hopping bloody mad...so hopping mad that I have written a letter to the manager of the benefits office and sent it today by recorded delivery. I have emailed my MP with a copy of the letter and a link to my blog to pass to Iain Duncan Smith, and I want to speak to David Cameron.

I have had bloody well enough now!

My letter is in my next blog.

More Attention!

I have been neglecting my blog lately because a few bits have been going on and what with that and general life mixed in, to be honest, I feel absolutely shattered and drained at the moment. I don’t mind telling you that I have not been sleeping well over the last week, but anyway, that’s to be expected, so let’s crack on.

Now, firstly, I made myself a lovely mug of coffee the other day.’ So what’, you might think. Well, as I sat down to enjoy it, I picked up my mobile phone to check for any missed texts or calls, as you do, and the bloody thing slipped out of my hand and right into my mug of coffee. Not just a little bit in, but RIGHT the way into my mug, covering the whole thing with coffee. So, after I said bugger damn and blast, I put it on the radiator cos I didn’t have any rice.

The poor little thing was completely dead which was a shame, cos I liked that phone.

Thanks to my lovely forum friends, I was able to get myself a new one for £39.99. Thank you J

But, of course, nothing is ever simple anymore. My car was in for a service and MOT that day and so Ady took me into town. I suggested that he dropped me off and drove around the block while I quickly got the phone, but he decided that he wanted to come to the shops with me. I hate and detest shopping, but Ady enjoys wandering around aimlessly looking in the windows..very strange. He was a bit put out when I made it quite clear that I was going to the phone shop ONLY and then straight home, but he came anyway.

We got into the shop and a lady came to help us. My old phone wasn’t on the wall thingy and I said that I wanted one the same and did they have any out the back. She went off to look and came back with two boxes. One was the same as my old phone and the other was a different one...erm, yeah, so we sat down and she set the phone up. The lady was a little bit, well, she kept making the odd mistake and saying that she was sure she was going a bit mad to which we politely laughed. She zapped the box with the zappy thing so I could pay for the phone and told me it was £29.99. I thought to myself, ‘well, I am not going to argue with you’ and gave her £30.00. We sat back down because I wanted to talk to her about Steph’s phone and she came back and started checking the boxes and asking to look at my receipt because she thought she had made a mistake and knew she was going mad.

She realised that she had zapped the wrong box, so ended up trying to refund what I had just paid, but the computer kept saying ‘no’, but 20 minutes later she managed it and I had to give her an extra £10.00 By the time she had buggered about with it all and tooing and froing, our parking ticked was about to expire, so we didn’t have time to discuss Steph’s phone and off we went.

Well, blow me down, we were walking back to the car and my phone rang. It was the lady from the phone shop asking me if I had the other phone she had brought for me to see in my bag. Bloody cheeky bint!

I shall go in to the shop in a few days and politely ask her if she found the phone she accused me of stealing....how bloody dare she! But I’ve built me a bridge and got over it now.

Now, three weeks on and my ankle still has some swelling and is still quite painful at times, but I have decided that I won’t be mentioning it anymore, because every time I do, Ady has to go one better!

Not content with having cancer, arthritis, underactive thyroid, diabetes and high blood pressure, last Saturday evening, Ady mentioned that he thought his tooth was a bit tingly and did I think his cheek was starting to swell. Well, I spose it was a little bit if you got the magnifying glass out, but nothing major.

Well, bloody hell, by Sunday morning, he looked as if I had smacked him across the face with a cricket bat in the night!

All of one side of his face was swollen, his eye was all puffy and he looked a right mess.

“I think it may be my tooth” he said

“Hmmm” I thought, “Is this a job for the dentist or the doctor” It was a bit of a conundrum but after I had tried to get hold of the dentist with no luck, and anyway, God alone knows where Dentaline is these days. It used to be in our town, but I think they have moved to Mongolia or somewhere similar in a money saving effort. We also agreed that antibiotics were needed and that perhaps the best person to prescribe these would be a GP under the circumstances.

So, I phoned the out of hours service whose office has been moved next door to Mongolia I suspect. They then got a GP to ring and speak to Ady, who then had to get the receptionist to ring back to give us an appointment. What a blooming faff, but we managed to get to the out of hours surgery for our appointment.

The GP we saw was really lovely and funnily, turned out to be a bowel cancer specialisty man, so we ended up having a good chat about bowel cancer and prostate cancer and different treatments and wotnot.

Ady said that his swelling wasn’t particularly painful but it was making him feel unwell and a bit sicky so the lovely GP man gave him two different lots of torpedo style antibiotics and some co codamol.

His face swelled more during the day, enough to make his eye nearly close. He usually takes Ibuprofen for his aches and pains, but this particular day, for some reason, decided not to take any and to just take the co codamol. That was fine, until he woke me up in the middle of the night in agony with his arms and wrists from arthritis pain *sigh*

Ady has decided that co codamol is crap and he is sticking with Ibuprofen from now on!

He woke up this morning with a whole load of gunk coming out of his eye “Oh look Em, I think the infection is coming out through my eye”....How bloody disgusting first thing in the morning just as I am waking up!

He went off to the dentist who told him that she thinks his crown has a fracture. She can’t do anything with him all the time the infection is there so he has to wait until 13^th December to have the tooth taken out. Blimey, I’d rather him than me, that’s for sure.

So there you have it. You would think that we would enjoy the lull before the storm, but no, yet again, Ady gets all the attention and I have to hobble along quietly with my ankle.

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

MyAnkleHurts

MyFaceIsSwelling

NotSwollenAsMyAnkle

MyFaceIsREALLYSwelling

BetterGetYouADoctorThen

*sigh*

R.I.P Mr Fish.

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 26^th 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 8^th 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 26^th and Mrs Radicals lady on 30^th.

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

NoProstateLane,

BePatientMrsTrialsLady,

WotStillNoBenefits!,

AdyyyyyyTheCatHasGotYourFish!,

IThoughtIWasMissingSome,

R.I.PMrFish

The Boy's Day Out.

I managed to talk three men into going to London to be on ITV’s This Morning to have their prostates checked. Considering men are completely useless at going to their GP to get their big toe checked, let alone their prostate, I was pretty chuffed with myself, and them!

The men were my brother Chris, my Brother in Law Andy and their friend, erm...he doesn’t really want to be identified, so let’s call him Dave.

Now, as I wasn’t there myself, I am telling you what they told me, so this could go anywhere....

They had to leave about 7ish to get to the South Bank for 8.30.

I sent Andy and Chris a text (I didn’t have Dave’s number) to say to have a great time. Andy sent one back saying that he was desperate for a shit, and Chris sent one back saying he hoped they didn’t mind that he hadn’t had a shit for a week. Chris had a skiing accident a few years ago and he doesn’t mind me telling you that he seems to have lost muscle contractions where his bowels are concerned and his peeing problems are masking any prostate problems he could have.

They got to the ITV place on the South Bank and signed themselves in at reception. They were told that they could have breakfast in the canteen, so off they went up in the lift with that lady who does the weather with her hair in a bob...I’ve forgotten her name, but anyway, her. They saw Bradley Walsh and Christina Blakeley in the canteen getting their breakfast too.

There were other ‘prostate men’ having breakfast and they all generally chatted and nervously giggled about it all.

They were put into groups which my brother seemed to have his name in all three, and off they all went. I am not sure what the whole group thing was about and from what I can gather, no one else seemed to know either, not even the organisers!

Chris said that the whole morning was a bit like laying a road while you were driving along it....

As they got outside, there was Dr Chris, Paul Ross (who was apparently a very nice bloke) and Jason Gardiner. My brother went up to them as they were standing there, shook Paul Ross’ hand and asked if they were here for the prostate check.

Paul Ross just laughed and Jason Gardiner seemed absolutely horrified...really put out... that Chris didn’t recognise who he was. Andy nudged Chris and said “Chris, that is Paul Ross, the Dancing on Ice bloke and the TV doctor...they are all famous”

“Oh well” Chris said, “Well how was I supposed to know that..never mind” and they went off and mixed with everyone else.

The programme went on air and they did a lot of standing around in the queue. Chris was standing next to Paul Ross, then Andy in disguise with his sunglasses and Movember moustache and Dave looking in completely the opposite direction as the camera came across...typical !

I thought Dr Chris was very disappointing when he said that Prostate cancer generally affects older men and what a slow growing disease it is. He clearly hadn’t done his homework, whereas Holly and Phil certainly had and asked the right questions.

I totally take my hat off to Paul Ross for having a DRE (Digital Rectal Examination) live on the show...as well as being a nice bloke in real life, he is a top man!

At the end of the prostate part of the show, one of the people organising the whole thing said to everyone that things didn’t quite go according to plan as no one actually had a DRE, but the Harley Street Urologist was happy to speak to anyone or check men if they wanted to. Or they were free to go.

Dave said that he had never seen the place clear so quickly as most of the men ran off!

The three men were standing there wondering what to do and talking about the fact that they had made the effort to go to London, they had clean pants on and that it would be a waste to just go home without even chatting to the urologist at least.

Dave and Andy turned to Chris to see what he wanted to do, and realised that he was already in there chatting the urologist!

Dave and Andy went off to find him and Dave decided that he would have his checked as he had prepared himself for it.

The Urologist agreed and pointed Dave in the direction of a three sided dome tent pitched on the South Bank! It had one of those green material screen things in front.

Poor Dave was HORRIFIED, but felt that he couldn’t back out now so went into the tent and dropped his trousers while the general public walked on by.

While he was lying on the bed, the wind started blowing, making the material in the green screen thing flap so passersby could see through and as he looked up, there was a big gap between the screen and the roof of the tent. He realised to his horror, that everyone in the canteen upstairs where they had been that morning, could all see RIGHT into the tent!

He had the DRE  and is actually very glad he did, because the urologist told him that his prostate is slightly enlarged, so he will having further investigations. The urologist also told him that it didn’t feel cancerous, but it is always good to get these things checked! Dave is in his forties.

Chris was in a rush to get to Ireland on business, so he didn’t stop for a DRE but I think he will be getting one done when he gets back to England.

Andy, felt that he had done his bit with his Movember moustache. He had a chat with the urologist and decided that he would pass on the DRE....wimp!

In all, the men said that they had a great day out. They met some brilliant people and had a good laugh.

Thank you Andy, Chris and Dave. Three bloody good blokes who took the morning off work, travelled to London with the thought of getting a finger up the bum, stood around all morning and came home. And all done in support of Ady. J

Devastating News.

We had our appointment to see the urology nurse yesterday. She is lovely and says it as it is.

Now, Ady and I thought we were going there to discuss how he is getting on in the piss department and sure enough, we had a great chat about it and she is very pleased that he is doing so well, still pissing himself a bit, but doing well nonetheless.

We had a good chat about the radiotherapy and the Radicals trial, which is a whole another blogs worth when I get a minute, cos I need to do a blog about the boys trip to London to go on ITV This Morning programme in between lying down in a darkened room with a flannel on my head, trying to come to terms with this latest saga!

Let me get to the point.

If you have been reading this blog all the way through, you will know that since his Radical Prostatectomy operation, Ady’s side effects have been erectile dysfunction amongst other things. My headaches had completely disappeared ...my cloud had a little silver lining.

Can you bloody well believe it, that bloody uro nurse has gone and told Ady that he has to do penile rehabilitation twice a week...bloody well TWICE !!!

So when I said that she was lovely at the beginning..well, I was joking! Just when I was happy with my sex life, she has to go and ruin it!

The woman who usually does the ‘sex clinic’, I spose that’s what you call it, I dunno, is retiring in December and our uro nurse is taking that job on, so she wants to see us when she is doing the clinic.

First of all, she wants him to carry on taking the Cialis tablets twice weekly....THATS bad enough, but she also wants him to inject the shaft of his penis twice a week (so we are up to four times a week  already!) with some stuff called Caverject.

Christ, can you imagine it, having to stick a needle in the side of your willy twice a week..*shudders*

Dear God, this is supposed to give him an instant erection lasting up to an hour...a bloody hour?!?! FFS! And if it goes on for more than an hour, then he has to get the frozen peas out...more than four hours and he needs to seek medical advice...oh Lord !!!

If he doesn’t fancy that idea, then he can have a pump..... a bloody pump FGS.

I assume he has to stick his willy in it and pump it up...i’m not sure.. and who said that romance was dead !!!

Can you imagine it, Ady running around the house with the pump in one hand and the injection in the other....Jesus, it just doesn’t bear thinking about does it!!!

Just when I thought everything was going SO well, I can now feel my headaches coming back to migranic proportions !!

Her excuse for these.. frankly, ridiculous ideas, is that if Ady doesn’t get blood flow to his willy, then the tube things that hold the blood to create an erection will sort of, become, erm, well cease up in a way and he wont be able to get a full erection again. Personally, I don’t see a problem with that at all.

My suggestion of putting a small band on the base of his willy, to stop the flow completely and treating it like a sheeps’ tail, got me left out of the rest of the conversation!..cheeky buggers. Although she did start mentioning self stimulation which made us chuckle a bit.

Ady has decided that he doesn’t really like the idea of injecting himself and will probably go with the pump.

I quickly reminded him of the time when I had just given birth to Charlotte (5 weeks early) and she didn’t have her suckling reflex yet, so we were expressing my milk to feed to her out of a pill pot. I was attached to an electric machine. Everyone was quiet in the ward, either sleeping or enjoying their babies or with visitors, when Ady walked in, saw me rigged up to this machine which was making a vacuum noise, he roared with laughter up and down the ward and yelled, “Bloody hell Em, you sound like a cow in a milking parlour...Christ, I could slap a sticker on your arse and send you up the market!”

So actually, I can’t wait until he gets his pump !!

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

DoYouThinkIHavePumpedItUpEnough?

GetThatThingAwayFromMe,

ItsCalledRehabilitationDarling,

FeckOrfIveGotAHeadache.

SheSaidSelfStimulation!

Speechless!

Well, I just don’t know where to start, I really don’t......

For those of you who don’t know, I am a member of a horse forum and have been for a few years. Thomas (my horse) died a couple of years ago, but I still belong to the forum as a lot of friendships have been formed there. I also have a Face Book page thingy set up with just forum people on it so I can keep in touch when we don’t post so much on the forum....it’s complicated  if you don’t know what I am talking about!

Anyway, there is a member called Carolyn. We have generally chatted over the years, either on the forum or by mobile phone, she is very nice and we get along well, although we had never met.

She sent me a text a couple of weeks ago saying that she had a plan forming and she would like to come and visit me.

She is well known on the forum for dishing out virtual hot choccie and sprinkles, so I just assumed that she wanted to pop down for the day and bring hot chocolate, sympathy and sprinkles as a gift.

Lesson No1. NEVER assume ANYTHING !

She was travelling nearly 200 miles to visit and we agreed that I would cook a roast dinner.

Now, I’m not embarrassed to admit, but I was hoping for some posh chocolate instead of the supermarkets own brand shite....

She was arriving at 11 am, so I had everything planned and all my cooking timings sorted.  Her car, no, sorry, ‘tank’ rolled up at 10 to 1 in the afternoon. I had told the girls to look out for her through the sitting room window. We had a good giggle watching her park, manoeuvring her tank backwards and forwards to get herself straight, completely oblivious to us watching her. She got out of the car, completely in a world of her own and all in slow motion, went to the other door and fiddled in the car again, while we were saying, “Is that Carolyn?” ..”Yes it must be her...she looks horsey”....”It can’t be her cos she is walking down the road”...well, the daft bat had gone down the road and across and was knocking on a completely different door!

We could still see her from the window, so I rang her. Still completely oblivious, she answered, eventually. By this time, the girls were wetting themselves with laughter, and all my earlier lecturing about best behaviour and good manners had completely gone out of the window!

She came in and gave the girls a carrier bag full of Marks & Sparks sweets....bless her, she must have walked through the shop and taken every bag of sweets off the shelves, and then gone to the bit where they sell those tubs of mini chocolate bites and cleared that as well and gave them to me for tea. And she brought Ady a tin of biscuits which he LOVES and is keeping to himself and also some hot chocolate!  Not cheap shite but M&S’ own no less !!

The girls were in their element and went into the sitting room to go through the packets and boxes and share them out.

I was about to turn the veg on and Carolyn told me to come in the dining room, stop talking  and sit down for a minute.

Everything was a bit of a muddle at the time, having just met and the girls with their sweets and lunch on the go, but I sat down anyway.

Carolyn handed me a card. It was a picture of an old fashioned black car with dark clouds above, but it was driving towards clear blue skies. Carolyn said she thought it reflected us coming out of the gloomy times and into the sunshine, which I thought was lovely and very thoughtful. Ady, however, said that it reminded him of a funeral car...miserable chuffer ! ( I will put a pic of the car up along with the other pictures I need to do).

She then handed me an envelope....I don’t know how to say this next bit....in it was over £1000.00 of cash, Sainsburys vouchers with permission to buy me some wine and fags, and Superdrug vouchers too. Well, thank God I was sitting down !!! WOW....just WOW....I really can’t put into words how grateful we are!!

I understand Carolyn has been on a bit of a mission doing a collection for us. THANKYOU THANKYOU THANKYOU, to all of you who contributed. You have no idea what this means for us !!

How you all managed to keep quiet about it, I will never know!

Christmas can happen again this year !

I had been telling the girls that Christmas would be very short this year (the same as I had told them last year), and presents would be just from aunties, uncles and friends who usually give to them. I was planning on just doing table presents at lunch time and hopefully a snowman at tea (a family tradition thing).

Ady and I had agreed to not get each other anything this year. If we had anything spare then we would spend in the January sales.

Your kindness has made Christmas happen for us. It will also allow us to pay the garage for Ady’s car repairs which we owe and get my car serviced and M O Td. It hasn’t had a service for three years and I need it to get Ady to the hospital every day for 4 weeks in the New Year.

The weight that has been lifted from my shoulders is huge. The financial burden of cancer is hardly ever spoken about because people don’t like to talk about their fiscal embarrassment.

Me, well, I’m not proud and I decided when doing this blog, that I would talk about every aspect and that includes the financial side....By the way, the benefits office STILL haven’t sorted our claim out....bloody shocking, it really is!

I didn’t post about my worries about what we were going to do about Christmas, because it is supposed to be a happy time for people, and who the hell wants to read about someone else’s doom and gloom...it just makes everyone feel horrible doesn’t it, so I didn’t see the point and there is enough doom and gloom in my blog at times.

I will post about it now, because you have all contributed to making our Christmas for us, so Thank you from the bottom of our hearts.

We are made up...we have logs from Sue, coal from Jennie, our Sainsburys voucher from the school mums and now money to see us through Christmas ! What more could we want!! We are a very very happy family, blessed with some bloody brilliant people in our lives.

Of course, Ady immediately said “Bloody fantastic, I can have some deluxe piss pads now”...I told him to bugger orf!!

And Steph can whistle for the Blackberry she keeps going on about !

We sat down to lunch. The veg was only just cooked cos I forgot to put them on during the shock of it all, but they were edible!

Then Steph started with a sneezing fit. She just sneezed and sneezed and sneezed. “Carolyn?” I said. “Has that fleece you are wearing been near horses at all?” “Well” she thought for a bit and said “It’s been in my car amongst general horse things, but not touching horses I don’t think”

To cut a long story short, she had to take the fleece off and put it in a carrier bag and I had to give Steph some piriton..she is SO allergic to horses that one !

We had crumble and custard which the girls said “No thanks” to so they could rush off and stuff their sweets, and me, Ady and Carolyn had a good natter before she went home.

It was really lovely to meet Carolyn finally, and just SO lovely of her to think of and organise a very welcome collection for us. Thank you Carolyn, so much. J I also understand that Jade and Dubs had some organisational input too, so thank you as well J

And thank you everyone for your contribution. Carolyn has told me that some people want to remain anonymous  and some people didn’t leave their names when donating, so bugger it all, I am going to have to be nice to everyone just in case now !!

Only joking guys !  but I really mean it when I say Thank you J

Oh yeah, and last week, I managed to wash one of Ady’s piss pads in with his washing...bloody globules of that gel stuff you get in nappies everywhere I tell you!

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

DeluxePissPadStreet,

SantaHasBeenAlready,

HappyHouse.

Still no Sympathy.

I had better catch up with the notes I made on my last blog, so I don’t forget.

Further back in the blog, is a picture of us all, taken at our friends Dave and Sue’s wedding where Ady was best man. The guy that took the picture was really nice and did them for free and emailed them to me especially. The photo guy went to see Dave and Sue, to give them their album. During conversation, he asked how Ady was. They were chatting away and Dave was saying about how he and Ady went to school together and have known each other for yonks. The camera guy was very shocked and said that he thought Ady was my dad and our children were his grand children!

We are not sure if I look extremely young, or Ady looks old and knackered.....I like to think that I look extremely young of course.

Ady has been feeling absolutely shattered lately and has been sleeping a lot during the day. He has been given extra Thyroxine for his underactive thyroid, which has improved his extreme need for immediate sleep. He came downstairs the other morning and told me about his dreams he has been having.

They are always about either his childhood or dead people.

His latest one was about his aunties, uncles and parents, who have all died in real life by the way. Anyway, they were all going on a holiday together, but Ady wasn’t allowed to go with them. He really didn’t want them to go, so spent his time rushing around trying to make it really difficult for them while they were getting the caravan ready. He was trying to break things and ruin the carpet and generally make life difficult. He was thinking of everything he could do to stop them from going. The relatives were insistent that they were going and couldn’t see what his problem was. In his dream, he was in a terrible state.

There was another one about cows in a field and they kept getting out. He was rushing around trying to put them all back in the correct field. Once he got the first lot in the field, the second lot would get out and it would go on and on all night....bloody hell, no wonder he is so knackered during the day with all that rushing around and angst !

He hates having all these dreams, especially of his dead relatives that seems so real. He finds the cow dream just silly!.

He woke in the night in the middle of the relatives dream and wanted to cuddle up, but then decided against it, just in case he pissed all over me.

We were all chatting the other day about general stuff, and up came the subject of funerals and music. Ady said that he would like the theme tune to Magnificent Seven as he is coming in to the crematorium, Mission Impossible as he is going down and a CD of Steph singing as we are all going out. Personally, I want everyone in fancy dress at mine and ‘Come on baby light my fire’ as I am going down, but each to their own.

Now, I am a bit worried that I may have given the impression that my children are little angels at all times. Well, I must tell you about the time when Steph had a fall from grace and I went completely mental in a bellowing kind of way. I can’t remember what she had done so wrong, but it was bellow worthy so it must have been serious...probably answering back or something teenageish. Anyway, I bellowed at her while she was down stairs, you know, the kind that all mothers do when they are losing the plot and going mental..hmm, perhaps it’s just me then, or you are in denial?

She then went upstairs when I had finished and left me thinking of all the other things she had done wrong recently. So off I went, marching upstairs. I stood at the top of the stairs bellowing towards her bedroom for a few minutes (probably asking her who she thought she was and does she speak to her teachers like that...that sort of thing). When I had finished, I turned around to stomp back downstairs, and there she was...in my room behind me !!

Well, I looked at her as if I knew she was there all along and stomped downstairs. I thought, buggerations, and now I look a right prat !

Steph reminded me about it the other day in the car and we had a jolly good laugh about it !

Quite a few people have been saying to me “Emma, don’t forget to look after yourself and have some ‘me’ time”. I was going to not play in the netball team I play for over the winter, so that I could be at home looking after everyone, but I decided that that would be my ‘me’ time people think I should have, and anyway, I love playing netball with the girls, besides, it’s only on a Monday evening.

We play in division two and I play goal attack. We are not a bad team as it happens. Well, last yesterday, I was merrily playing and enjoying my ‘me’ time. We were nearing the end of the game and we were winning by a few goals. The ball was being passed to me as I was running down the court with the goal defence hot on my heels. I jumped to catch the ball and as I came down, I landed on the goal defences foot and my ankle twisted right over...not a little bit, but RIGHT over and as it did, It felt as if there was a load of bubble wrap in my ankle that was popping. Christ that was agony!

So I lay in a heap on the floor muttering things like, bugger, bugger, shit, shit, Christ this hurts. It then dawned on me that it was my ankle JOINT...I don’t ‘do’ joints at all and the very thought of it made me feel very faint. The girls noticed I had gone white, so they laid me on my back and lifted my feet above my head.

Eventually, they got me off the court. I have never felt so much agony before and all I could think of was how I was going to work and look after Ady and the girls. I couldn’t even put my foot to the floor!

I managed to get home, and hobbled indoors. My foot was all swollen so I sat in the sitting room moaning and groaning about how painful it all was.

Ady went outside and made me a walking stick and a coffee, bless him.

This morning, I was in complete agony. My whole foot had locked into place and it was even more swollen!

Ady said “Bloody hell, High Command is down, how are we going to cope now?!”

He took me off to A&E and dropped me outside. I hopped to the reception bit while he parked the car.

Ady came in complaining that he had pulled a muscle in him bum as he was getting out of the car. I told him that it wasn’t about him today, it’s all about me and my foot! His reply to that was “Bollocks”. Bollocks as in what a load of rubbish type bollocks, not ‘Oh dear’ type bollocks.

Anyway, we saw a nurse and went off to x-ray.  I had about 3 pictures taken and was carted back to the nurse in my wheelchair. She had a look at them and said that they looked fine and no broken bones. “Are you sure?” I said “Oh yes” She said “You have sprained it and you need to keep it moving”

Can you believe it; she sent me home without any crutches, bandages, or plaster cast...nothing. Well, I am sure she has got the whole thing completely wrong and I am waiting for the call to say they have made a grave mistake, a doctor has had another look and it is very seriously broken. In fact, I am quite sure it is shattered into tiny pieces.

Needless to say, no sympathy has been forth coming, and of course Ady is in agony now because his pulled bum muscle seems to have trapped a nerve and the pain is travelling down his leg. Of course he is in MUCH more pain than me !

I have hobbled around so much, that I have now pulled the muscle in my left leg. But never mind, High Command is back up and running...well, hobbling actually.

We are off to see the piss nurse and the arse people next week. J

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

ProstatelessLane,

ShatteredBonesInMyFoot,

SciaticaStreet,

WillIEverGetSympathy,

ProbabyNot.

Settling into it.

I think we all seem to be settling into this cancer life. It’s as if, life before cancer was a completely different life. Something we will never get back. Now, there will always be cancer with all four of us, and when the cancer goes, Ady will probably go with it.

That can be a pretty sobering thought, and something that crosses all of our minds from time to time.

It did the other day, when we got the letter from the oncologist going over what we talked about at our appointment last week.

Seeing it all, written down in black and white, makes things all the more real.

What we didn’t realise, is that when Ady starts radiotherapy, he will have to stop taking the Methotrexate for his arthritis. I don’t know why, so I will be asking the bones man when we see him in December...nothing is ever easy or straightforward, it seems.*sigh*

The letter also went on about Ady’s co-morbid conditions and how she needed to take these into account when treating him.

After reading the letter, Ady went a bit doomy and gloomy saying how he was sure he would be the first of his brothers to die (he is the youngest of 5 brothers and one sister). He went off for a sleep, like he does when it all gets a bit much. He was more positive when he woke later.

I spoke to the girls today, to catch up with how they are feeling and what they are thinking.

Steph said that she does still worry about it all sometimes, but all the time Ady is at home and not in hospital, she is happy things are OK.

 I have kept the girls school informed every step of the way, and I have to say, they have been absolutely BRILLIANT with both of the girls. When I was talking to Charlotte, she was laughing, saying that she could be throwing up green puke in a bucket in front of the teacher, saying she feels unwell and wants to go home, and the teachers would immediately say “How is your dad, it’s OK Charlotte, you can talk to us”...Charlotte would be saying “No, I am actually puking here..I am fine about my dad”, and the teacher would say “Yes, but you can always come to us to talk” They are brilliant and I know that they will help the girls if ever they asked. Charlotte finds the whole thing reassuring and amusing at the same time.

Now guess what....I rang the benefits office again last Friday, to see where the rest of our benefits have got to, bearing in mind that Ady’s sick note started on 14^th August and I phoned in the claim about 3^rd September , got some of it at the beginning of October and sent everything they asked for on 11^th October, well..........wait for it............it is still with the decision makers. They have a back log doncha know. I was very nice to the girl on the end of the phone when she told me to ring back in a couple of weeks.  She told me that she could sense that I was about to blow a gasket at her and completely understood. I give up.

We went to our soopadoopa GP the other day. He seems pretty happy with Ady, I think, and said that all his bloods seem OK, even the one for his bowel cancer. That’s a relief, and we will get confirmation of that when we see the arse people in a week or so. Hopefully, Ady will be a year bowel cancer free. Another four years of that and he will be in the cured of colon cancer group. He did say that Ady’s thyroid test was a bit dodgy and so he has put him up 25mg to 175mg daily. Perhaps that will explain why he feels so shattered all the time!

When I claimed Employment Support Allowance last year during the colon cancer saga, the benefits people went through everything else I could claim for, and sent me housing benefit, council tax benefits and Disability Living Allowance claim forms. They told me to fill them in and see how I got on. We were with our old GP at the time, and I spoke to him about the DLA form.

He insisted that DLA (Disability Living Allowance) was for people who couldn’t ever work again. I insisted that actually, there are three levels of DLA and that we should have been claiming since Ady was diagnosed with OCD and arthritis. I told him that you can work while claiming DLA. I was quite sure I was right, because I had just been told on the phone by the benefits person. (Mind you, they have told me a load of bollocks before) We ended up having a bit of an argument about it on the phone. He wanted the name and number of the person who told me this so he could speak to them, so I gave the silly bugger the 0845 number we all have to ring.

Needless to say, it completely put me off putting in a claim for DLA then.

I forgot about it all, but people are starting to tell me that we should be entitled to it. I have spoken to the Macmillan nurses, who are sending me a claim form and will help me fill it out. I also spoke to our lovely new GP who said that he will be happy to answer any questions they may have.

Having a nice, caring, understanding GP behind you, makes the world of difference!

Since I have been doing this blog, I can tell who has been reading it and who hasn’t when I see people. Very few people avoid us now and those who have been reading it, speak to us normally, chattering about the latest goings on. They know exactly what is going on without me having to explain everything, which is great. Those who haven’t read it, tend to treat us a bit more gently and tentatively ask how things are. I get the impression, sometimes, that they are scared of the answer, so I point them in the direction of my blog.

We have lost one or two friends along the way, but gained a whole load more. Some people who we thought would ‘be there’ for us, seem to have vanished, which at the time, was really disappointing, but now we don’t give a shit. There are others, who we really didn’t expect to step forward, who have, which is really lovely. It’s funny how things work out, and for us, our lives are far richer with the people we have in it now, than it was in the pre cancer days.

The phone rang the other day, which Ady answered, cos it’s usually for him these days. I was in the sitting room watching telly and Ady was chatting away in the dining room. After a while, he called through to me saying “Em, have I got three cancers?” “What?!?” I said, “Have I had three cancers?” He said.

“No darling, just the two” I said back. “Oh” He said, “Well so and so, has heard from so and so who heard from so and so that I have three!”

“Well, tell so and so, to tell so and so, to tell so and so, that it’s STAGE three, not three cancers” We had a bit of a chuckle about that and Ady said that he nearly got a panic on then!.

I have been hard at work, trying to get men to go to London for a prostate check. I wasn’t really getting very far, and was thinking to myself, “Hmm, I am going to have to find some building sites with men on” and then, my two brother in Laws, my brother and their friend, all said that they would go and do it, so well done, Andy, Chris, Michael and Dave !! Top men in my book !!!

There are a few other bits to say, I think I have said enough for now and will save it for my next blog.

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

<0.1 Zero Lane,

PissingLess Street,

HopeWeStayThere,

KnackeredDom.

Just ignore this bit. I need to make a list for the next bloggy bit cos I know I will lose the bit of paper I have written it on, so it’s safer here....Funeral, wedding  pictures and what a prat I am.