Dying, it really can be frustrating...

So, you all see the photos of me that I post from time to time and let's be honest, even almost a year after being initially confirmed as a person who has cancer I still look pretty good if still somewhat rotund ....

If the doctors are to be believed I now only have 7 months left of the year they estimated that I have left to live, but again being honest I really don't even think about it except along the lines of, yeah, right.  No, I think I will last the seven months and like the Duracell bunny I'll just keep going on and on and on until one day suddenly the cancer will probably sit up and say, ' hey, this tit is giving me a run for my money so I think I'll up my game a bit and make him suffer!'

Well if that's the case then so be it, but until that date it can go and get stuffed and I will continue to grab onto life and enjoy it with Ishbel, the kids and the Grandkids  and with all you wonderful folk popping in from time to time to keep me company.

Since the day the surgeon suggested it wouldn't be a good idea to operate I have been resigned to the fact that my death is going to come a lot earlier than expected and there is no doubt that I did feel more than a tad down about that especially as the Grandkids, apart from one are at ages where it will hurt them the most, with the youngest Lacey Mae still too young to comprehend what would be happening and even when she missed me she would still be so young that she would soon get over it and forget me apart from the silly stories her mum, and sisters would relate to her to try and remind her of me.

Death is not something, we as a family dwell on too much apart from me using it as a means to an end ... 'what, you're kidding, I can't do that or go there, I'm dying, give me a break...', usually to be told to piss off by Jennifer with the added rejoinder, you're taking your time then......

And then I get the call from the GP 'a surgery from a new nurse inviting me in for my annual asthma check up. On learning that she is new I ask if she has checked my records, no, not really, she replies. Oh, right, says I, so you don't know I have terminal cancer and there is not much point in me coming in, is there.

To be honest and thinking about it later I felt like a complete shit putting her on the spot like that but again I have never really been a fan of that annual check up. My first question to the old nurse ( who wasn't old really) was usually, have you found a cure yet for asthma. No, she'd reply. Then why am I here then, I've got better things to do with my life than take time out to come here ONCE A YEAR ...... yeah I know what an arse hole,  I know, I know......

And then I have to attend the hospital every two months at the moment and these oncologists are busy folk, there seems to be a lot of cancer patients to see and I imagine that it wears them down.  But with the cancer, apart from attending Broomfields hospital, there was just something about that place that really got to me and my irritation did show through, but generally I have accepted my fate and just get on with it. I attend hospital, I sit there and feel sorry for some of the others who look close to deaths door and clearly with much further advanced cancer than me and I feel sorry for them BUT glad that it isn't me ...

Not once have we attended the hospital and been seen by the oncologist or registrar anywhere near to the time of our appointment.  Today was typical of that.  Our appointment was for 4.15 and as usual I turn up a good 50 minutes early, a) to get a parking space and b) in the hope that I might get in early! Not much chance of that, but I keep trying anyway. We were finally called to see the registrar at 5PM, 45 minutes after the scheduled time.

It's one of those things and as I said earlier, there seems to be an awful lot of folk with cancer to be seen and I've noticed that depending on how poorly or well the person looks like going in, depends on the time spent with the doctor.  I also imagine as well that where a person is having difficulty in dealing with their situation and maybe tearful , etc, I can't imagine the doctors rushing through the consultation and throwing them out of the consulting room. It's just the way it is.

So then there was this one guy there today.  He looked a good bit younger than me, which also may have accounted somewhat for his attitude, but he also looked about as bad as me and you know what I'm saying here... Not that bad, considering the diagnosis .... So, he had been in there when we arrived. I noticed him as there were plenty of chairs in the waiting room, which was it's usual busy self, but he was perched leaning against the window ledge, staring at the corridor and the consulting room doors.  Eventually one of the nurses spoke to him and the next thing we hear is him ranting at the nurse. 'I've been here for ages, all these others are coming in after me and they're being bloody taken in to see the doctor in front of me. I've only been given 6 months to bloody live and I've got better things to do with my bloody time than to stand here and be ignored ....'

And with that he turned and stormed out the door.

Now, I can and do understand his frustration. You can see from my own experiences above, that I too, along with every other cancer patient attending the clinic, have to sit for long periods and the first thing you do on turning up, you look at the board.  Today it said, 'waiting time for Dr Chan, 30 minutes' but mine was 45 minutes.  Is there not enough oncologists and registrars, clearly not.  Is that the fault of the doctors, probably not? Is it the fault of the nurses, most definitely not?

Obviously I don't know this chaps particular circumstances. And my attitude, again as you know, having been shot, stabbed, crippled, nearly drowned (3 times) and all that as an adult and then of course there was all the near misses I had as a kid, I really was reckless and nearly died on a couple of occasions between the ages of 6 and 12 as I didn't recognise the danger of situations I put myself into, I accepted, quite calmly the news that my days were finally numbered.  Having accepted it, I now just get on with living my life enjoying almost every minute of it and dragging myself out of bed to go to work every day, even when I really don't feel like it.

Will this state of mind continue as my condition begins to deteriorate, I would like to think so, but who can tell.  I just hope this chap comes to terms with his situation, for his sake and those close to him.  All the doctors and nurses who look after me, and him, at Basildon hospital really are there to help and assist and make life as comfortable for us as they are able to and through no fault of theirs, we, the cancer patients, will always outnumber the number of people who are giving every day of their lives to look after us to the best of their ability, training and calling.  They are not there, when we turn up, huddled behind a closed door, drawing our names from a hat, to see who is going to get seen. Some patients condition are much more progressed than others and some have conditions that are much more complicated.

Some of us, need to have the information given to us by the doctor repeated ad infinitum, and in simple terms that we can understand.  This isn't a visit to the GP that you know will only last 5 or 10 minutes and the sooner that poor chap comes to realise that, hopefully for him, he can get on with living his life and maybe, just maybe getting rid of his anger may slow the progress of his deterioration.

BTW: I didn't get to see pretty wee Olivia Chan my oncologist and ended up with tall handsome Ewan, her new registrar, which pleased Ishbel no end as apparently he was delicious ...... Sheesh and all I got was an increase in meds.  ah well, maybe  I'll get wee Olly next time .....

Mr Fats day at Broomfield

The reception at Broomfield 

Well, if I didn't tell you I attended the 'other' hospital last Friday, 24th,  with Ishbel to meet with the consultant surgeon Mr J, a couple of junior Doctors, one from Bangladesh and one from Italy (and as I write this with the news on there is a report that there is a 80% increase of death if you have surgery on a Thursday or Friday in the UK, nice to know! Is that because the staff are thinking about their weekend off?).

So, met with the consultant who again confirmed that yes I do have a cancerous tumour in my gullet but that the last scan, a PET, indicated that the tumour was localised. He then went on to explain that there would be three further tests, starting next week, an *ultrasound then June 6th for a Laparoscopy* and then finally a fitness test, on a bike machine on 10th June, to test my fitness for surgery.

Once all those tests were done they would then have a video conference with the team in Basildon who referred me to Broomfield! It was the left to the delightful upper GI Nurse Specialist J B to go through the tests in more detail explaining the procedures and issuing me with another library of literature on my condition, very competent and put us at ease. Although I did point out to her that as it didn't come in Kindle format I probably wouldn't read it, and as it turned out, that was a mistake that led to an argument with the doc with the knife, before he cut in to me ....... More on the later

We were then handed off to the two Junior Doctors and both Ishbel and I immediately thought "The Big Bang Theory" for no other reason than, like Leonard, Raj, Howard and Bernadette, the two doctors were perfectly formed little humans; tiny perfectly formed little people - and if I may say so without getting another smack from you know who - gorgeous wee things - a total distraction, for me at least.

The only thing is, I can't remember their names, sorry ladies. But it's your own fault for being so distracting..... The Italian was from Naples and the Bangladeshi one was from East London and had never been to Bangladesh! Me, I'm from Scotland and consider myself British but there you go, they were still great and put us at our ease.  They had a a battery of questions for me on my general health issues and the symptoms I had been experiencing and then a wee poke and a prod before sending me off for an ECG and a blood test so they could have my blood type, should I need a transfusion during / after surgery. And during this poking and prodding they told me I have a heart murmur too, bit not to worry about it, do I ever - not really, but suppose it is nice to know!

Of course, surgery will depend on whether I pass the fitness test.... Oh, and after giving me a good going over and taking swabs to test for MSRA   So, although all these clinics are operating and there were still patients waiting to be seen and it was now 4.45 pm we discovered that the blood test clinic closes at 4.45 on a Friday, way to go Broomfields Hospital, no wonder then that more patients die going in to surgery just ahead of the weekend if departments can't wait to get out the door for their off time, is it!

So it was back to the clinic and the two wee darlings fighting over who was going to draw blood, I suspect my flirting had taking its toll on them and the pin prick was going to be a reminder to behave, but no, they liked me and were gentle ...

Ishbel. looking good 

Atrium Information boards 

When we arrived earlier in the afternoon, The Boss came with me, and we did arrive much earlier than our scheduled appointment for 3 Pm we were struck with the look of the hospital, very modern and high tech entering into a high roofed glazed main reception area with a couple of giant statues and their fancy patient friendly booking in machines so that you didn't need to stand in a queue, not that there was a queue at the reception desks though, it looked impressive. I wasn't in the system for the self booking machines but was on the system at reception. We were then directed to the atrium where there was a coffee shop, a WH Smiths a Marks and Spencer's and a Costa coffee and all

around the atrium were screens where names of patients kept popping up with directions to where they had to go. We had a coffee and a sandwich while we waited and eventually my name popped up and we were directed to where we needed to go, all very high tech.

Then they let themselves down in the Upper GI clinic as they too had a screen on the wall giving the names of the consultants and I suppose patients names would pop up too, the only problem was that it was showing doctors names for the AM surgery and my doctors name was nowhere to be seen. You are just left to sit there with none of the nursing staff asking who you were or who you were to see until eventually one turns up and calls your name. Well, we all know I can be a bit of a tit and I can get irritated at the most innocuous of things that most others would just shrug off, including Ishbel, but for gawds sake, if you are going to use this technology and put it on the wall, at least make sure it is being kept up to date, or switch the F*****g thing off, it's not rocket science and when patients are sent round from the reception area, it doesn't take much for one of the many nursing staff to at least enquire who you are, look at a list and at the very least say, ' Ah yes! Mr Stronach, Mr J will see you in ...." I know that they can't say, " he will see you in 15 or 20 mins" but any communication is better than no communication at all....

Which then brings us to Wednesday. So I was booked in for a 7.30 am appointment and because I couldn't have a routine ECG on Friday because they close early too, leading into the weekend... I have to get one of them as well, I was told by the clinic on Friday that they normally pick you up about 2 hours before but at 6.40 Am still no sign of the transport. I phone the hospital switch board on the number on the card issued by the Upper GI clinic only to get a recorded message that the number has changed! Re-dial and explain the situation and that my appointment booking is for 7.30! Can't help with that other than to give me the number for patient transport, which I duly ring but get no response.

Then at 6.55 AM 'C' arrived to collect me and I told him that I had been trying to ring patient transport services, he told me that they do not man the lines until 7 AM and that the first collections are scheduled for 7 AM or as near to, WTF, are departments not talking to each other or is this just a case of total inefficiency within the NHS and associated services, who knows, but for me at least very irritating. Just before the transport did arrive I left a message on the Upper GI nurses answer phone explaining that transport hadn't arrived and that I would probably just go to work, I hate hanging about ...

So anyway we arrived just before 8 AM and I was taken to the day admissions ward.  The anaesthetist who had me on his list for surgery for a Laparoscopy- this is when it all started to go even more downhill after the irritating wait for the transport - and I explained  that I believed I was in for an endoscopic ultrasound and that the Laparoscopy was for next week, He said no, laparoscopy today and ultra sound tomorrow! I said no one procedure today and the next on the 6th, so confusion reigned and of course I was also getting my Laparoscopy confused with my Gastroscopy that I had had at Basildon back in April, well there are all *copys*, so easily done for an idiot like me, so he toddled off shaking his head not knowing whether I was being done or not ...

The Polish nurse, who I think was in charge came to see me after that and I must say she was delightful and helpful and her command and use of English was second to none, just a pity that M the male nurse from Spain wasn't the same as he had to have every thing repeated to him, when he would utter, Huh! every time you spoke to him and not just me, other staff had the same problem trying to communicate with him and at one point he answered the ward phone, gave the ward name  listened for a few moments, didn't say anything else, but after a few moments, put the call on hold without saying a thing, nipped into the ward office and asked one of the other nurses to take the call as he couldn't understand what was being said.  it's just an observation and I have made it elsewhere in these posts, but I have absolutely no problem with other nationalities coming to work in this country as long as they can speak and understand the language, but I find it incredible that you have an SRN who has such difficulty with the language working in an NHS hospital....

Then Mr H turned up to discuss the procedure, the Laparoscopy, and said he noted that there was some confusion and asked who I had seen in clinic and when.  I informed him that I hasd seen Mr J on Friday of last week and he responded, 'no you didn't!'

Apparently I hadn't seen Mr J as he and Mr H were in America last week! Well I know I am probably going a bit senile but I know who I saw, unless of course the clinic notes were wrong and the consultant I saw gave me the wrong name or there are two Mr J's, so of course this got my back up and I responded in an argumentative fashion that I knew who I saw and I knew what I was told... ending with, 'that the initail impression of the glamour and glitzy show of Broomfield was being let down by all the little niggly things under the surface and that I had been receiving much better care, treatment and response from Basildon Hospital'

At this Mr H sharply retorted that I seemed to be blaming him for me having cancer and that at least, unlike Basildon, we are not under investigation for killing patients, WTF! I was left speechless by this little outburst and couldn't believe what I had just heard.  He went on to point out that unfortunately for me, 'coming from Thurrock and others from Basildon and Southend who had cancer HAD to be referred to Broomfield, and as such, they dealt with over 2 million patients and did I want the procedure or not'

So rather than say what I immediately though, which was F*** You mate! I said off course.  Before he buggered of he did admit it wasn't last week he and Mr J had been to America but it had been the week before thereby implanting the thought in my mind do I really want his guy near me if he can't even remember what country he was in last week .....

The nice Polish lady came back to me then to take my blood pressure, and do the ECG, I suggested she might do well to wait a few moments ....... she smiled

After all of that , I was first up and still in surgery for just after 9 AM so all of the aforementioned while seeming like hours wasn't that long but I don't suppose it helped them or me towards a stress free day and I was back on the ward just before mid day.

I felt absolutely fine when they woke me up, was on a drip and didn't feel in any discomfort, although I have to say and it was probably the as an outcome of my argumentative nature and his outrageous comments about another hospital I was probably the day patient from hell for the remainder of my stay and just wanted to get out of there, even had the elderly chap patient in the next bed complaining about my loud tapping of my fingers waiting for the drip to be removed and released and that was complicated as M the SRN from Spain, when asked when I could be discharged and transport booked to take me home, said he had had a colleague book the transport and they would get me off the drip soon, that was around 1 PM, I eventually got out of there at 5 PM.....

Now I have to say that in defence of the hospital, that the clinic on Friday did give me notes an the procedures and that I was due in for a Laparoscopy but I didn't read the note and that the Endoscopic ultrasound was for the 6th, even although they seemed to think I was staying in overnight and having that on the Thursday, but Ishbel said  the same thing as me that we were sure that we were told the reverse order, so it was all my own fault for not reading the notes, but that does not make Mr H's comments any more excusable and just as a matter of note it would seem that I was not the only one complaining about the level of service this week as I noted in one of the local papers, that a mother was complaining about the treatment of her 14 year old son at the hands of Broomfield, so not as perfect as Mr H would like to think, but then none of as are, including me.

Finally, I suppose you are all asking the question, if you have hung on this long and if you haven't I don't  blame you, as to what the results were, well, a severely bruised tummy for one

and the results showed a 33cm long tumour but with no spread. So, Mr H who came back to see me in the afternoon tells me that that is fairly good news and that after the Endoscopic ultrasound and the CPEX test on the 10th I shall probably be referred to Southend Hospital for Chemotherapy and then back to Broomfield for surgery... So looks like I am going to be a TiT for a few more years

Back to normal I hope tomorrow with a Carrot and Coriander soup recipe and a Book review of Henry Wood Detective Agency by Brain D Meeks on Sunday or Monday

NHS an update - still no word from my MP

As you know I wrote to my MP last week asking her some questions about the booking system for NHS appointments.  I was going to say that I have not received a reply, but that is not strictly correct:

There was an auto reply to the email, which read as follows;

 HOUSE OF COMMONS
LONDON SW1A 0AA

Jackie Doyle-Price MP
Member of Parliament for Thurrock

Westminster Tel. 020 7219 7171
Constituency Tel. 01375 802029


Thank you for your email, which will be dealt with as soon as possible.

If you are a constituent living in Thurrock, please ensure that you have provided your full name and address. No emails will be answered unless a full address is provided. A telephone number would be appreciated but is not absolutely necessary.

Please note that there is a strict Parliamentary convention that MPs can only deal with matters raised by people from their own constituency.

I receive a large number of emails, letters and phone calls each day and I will try to reply as soon as possible. However, please note that all communications, including emails, are dealt with in the order they are received.

Thank you for taking the time to contact me.

Jackie Doyle-Price

To be honest this is probably more than I actually hoped for and as it has only been one week I am probably being an impatient patient.  So I will curb my usual frustrations and see if a more formal reply actually turns up.

In the meantime and in regard to hospital appointments I can report the following;

My ire was irked at the fact that my Doctor referred me to some outfit called Fortis who would then make the hospital appointment for me at the audiology department to have my hearing tested.  

Fortis eventually sent me a letter only after I called them. But during the course of that call I discovered that they were making an appointment for me in a hospital that, if you do not have your own transport, is difficult to get to from where I live.  So during the course of the call they agreed to make me another appointment at a hospital that is only a hop skip and a jump from my front door!

They then sent me two letters, the one for the original booking and one for the new booking!  Banks charge anything from £12.00 to £25.00 to send you a letter so how much does Fortis charge the NHS for sending them?  I also note from the leaflet that I was given that Fortis appears to be owned by a group of local like minded GP's.  So that means that they are getting their £1000k plus fee from the NHS for providing  the basic GP service but now they are also charging the NHS to send out letters to patients for appointments.  Well on the face of it ok but then you discover that you still have to receive a letter from the NHS appointment centre and the specialists clinic, confirming the appointment, so the whole system is being duplicated.  Now I ask you,  "Is It Me"?  "Am I being a particular dumbfuck here or is it them"? 

The Labour government took us into bankruptcy both Economically and Morally leaving a note for the ConDems as they exited stage left informing them there was no money left.

The Condems took this note literally and started slashing all internal UK departments spending while maintaining the Department for Overseas Developments budget for Aid and Assistance elsewhere, including £295 million per year to India.  India is, if you aren't already aware, a Nuclear Power and has a Space Programme. For shits sake even America is now saying that it [sadly] can't afford to maintain it's own space programme, yet we give India £295 million pounds a year!

I'm losing the plot here..... NHS appointment systems, well update.  Last week Ishbel got a phone call at home from Orsett Hospital to say that the audiology department might be able to give me an earlier appointment if I phoned them, that was on Thursday, so three letters and a phone call.  Anyway I forgot to do this on Friday and now I wish I had forgotten yesterday, because I made that call............. and this is how it went.

10. 50 AM called the number got an automated system which I later discovered is named, "The Oracle" Now I am seriously looking over my shoulder to see if Mr Smith from the Matrix is about to take over my body and by the end of the 'call' I was wishing he had.

Do you remember that scene in The Matrix with Neo and The Oracle in the kiddies play area and she says to him, "The bad news is there is now know way that you can know whether I am here to help you or not"?  well, I have got news for you if you are in the UK and have to phone an NHS number that employs this system;

SHE ISN'T FECKING THERE TO HELP YOU AT ALL

No, she is there to make your life miserable and frustrated, she is there to deflect you from the people who are still probably sitting there drinking coffee and saying to each other over their digestive biscuits,,

"I wonder how many sad frustrated dickhead patients we have managed to feck up today, when they thought they would get one of us and we gave them this system, anyone for another coffee or herbal tea"

Oracle says, " You have reached Basildon NHS trust (or words to that effect) please speak the name of the department you require or dial the extension number now". 

Now I am a sad bastard when I get a hospital appointment letter, I scan it in to my computer, wasting space I know, and stuff the original in my 'manbag' that I carry around with me - Ishbel doesn't like this but that's another story for later- 

So, I already have the letter on screen and I am busy looking for the extension number  THERE ISN'T ONE (check all the other letters I have later NONE OF THEM HAVE AN EXTENSION NUMBER - SO WHY ASK THE FECKING QUESTION!!!!!!!!!!!!

Me, I ask for,  "ENT"

Oracle, "I am putting you through to A and E unless you say cancel, you may also ask for the operator"

Me, "Cancel", then ask for "Ear Nose and Throat"

Oracle, "I am putting you through to elderly services department unless you say cancel, you may also ask for the operator " 

Me, trying to be clever as I become more and more senile and elderly by the fecking minute, "Cancel" then I ask for "Orsett Hospital Ear Nose and Throat Department"

Oracle, " I am putting you through to Orsett ward now unless you say cancel, you mat also ask for the operator"

The phone starts ringing and by this time it is 10.54 AM and the phone rings and rings and rings and rings and rings for two minutes and eventually is answered.

Female voice, "Hello, ENT emergency how can I help""

Me, "Uh, Oh, did you say ENT emergency"?

Female voice, " Yes, how can I help"?

Me, " Well I don't know if you can I phoned Basildon to get through to ENT Appointments, but your......"

Female voice, "Oh, you got the machine then...."

Me, "Yes, I have an appointment for ........

Female voice, "We don't do appointments, do you have wax in your ear"

I though she was being rude now, but I will give her the benefit of the doubt after all I am maybe going deaf (and clearly Fecking insane)

Me, "No, it was about an appointment and I asked for ENT appointments but it clearly is not impressed with my Scottish accent"

Female voice, "Well sorry, can't help you you will need to ring them"

Me, pleading in a whinny voice, "Oh can't you help me, can't you transfer me to the appointments department, please"

Female Voice then asks me who my appointment is with, I tell her and she informs me that she can put me through to Debbie the Consultants secretary, which she promptly does....

Long story short I  got through to Debbie and explained my tale of woe to her and asked if she could check and give me the earlier appointment that the phone call on Thursday offered!

She explained that she could not do that but she could transfer me to the "NEW APPOINTMENTS" centre.  I enquired if that was a "New" NHS appointment centre or a Fortis Appointment Centre and she said, "NHS"

So, anyway she tried to transfer me but the phone kept ringing, bless her she stayed on the line and then gave me THE EXTENSION NUMBER saying that it would probably be better if I phoned in the afternoon as they were normally quieter then! (That's probably because all we FECKING ELDERLY FOLKS are having our afternoon naps.

I thnaked Debbie for her help and hung up and do you know what I have not called the number, it was by then 11.14 AM. 

TWENTY FOUR MINUTES IS CLEARLY NOT A LONG TIME IN ANYONE'S LIFE, UNLESS OF COURSE YOU ARE STRAPPED TO A TABLE AND SOMEONE IS PULLING YOUR FINGER AND TOE NAILS OF WITH A PAIR OF PLIERS OR SINGEING YOUR BOLLOCKS WITH A HOT POKER AS THEY PREPARE TO SHOVE IT UP YOUR ARSE....

And that is what that 24 minutes felt like.  

Burt one thing I will mention and point out here, did you see that part of the conversation with Debbie from the NHS, here it is again;

She explained that she could not do that but she could transfer me to the "NEW APPOINTMENTS" centre.  I enquired if that was a "New" NHS appointment centre or a Fortis Appointment Centre and she said, "NHS"

So my original question to my MP stands, "Why are the NHS in this part of Essex paying a third party through the GP system, owned and operated by the GP's to organise NHS appointments while we still have a "NEW" appointments centre in the local NHS"?

We could get rid of one of them and give the money saved to bloody INDIA!!!!!!