1 + 1 = 1

From today I have decided to post from my other blog where you will find all my updates relating to my term with CANCER [I will have the occassional moan on there too!]

If you have stumbled across this Blog and wish to read more about living with cancer then please visit my other site where I have decided to put all postings on the one blog for ease of use and postings.

The other Blog is ‘Old Enough To Moan’

One over, another arranged for next week.

Yesterday’s EUS for me was quite a breeze, thanks to the team and staff ant the University hospital, especially the professional who carried out the procedure who, as promised, did not allow me to feel a thing.
All we need do now is wait the results as we are told to expect to wait the usual 8-10 days.

My next appointment for an Endoscopic-Retrograde-Cholangio- Pancreatography [ERCP] is booked for Tuesday [21 October] of next week. This will be carried out under X-rays to see any dies injected into the area during the procedure. The main purpose is to insert the ‘stent’ tube to enable me to rid the Jaundice in order to get strong enough for forthcoming operations.

Some poor sod did not fare as well as me yesterday as he fainted at the sight of the needle as it was placed into the back of his wrist [the trick is to look away] and then have a ‘panic’ or crash type team attend him as his situation went from bad to worse. All witnessed by those of us waiting, primarily me, to go into the operations room. I did think that they don’t get too many of those in a day so I it increased my chances of having an easy time of it.

Monday 13 October 2008 – Even closer

We attended the Consultant Surgeon appointment today and have come away with much more of an idea where we are at than we have had during recent visits to hospital.

They are still none the wiser yet if it is a cyst or a tumour causing the blockage and tomorrow’s EUS should be able to tell, I may still need more CT scans after that.
Whether it is a cyst or a tumour then either way I am looking at no less than major surgery. If it is a cyst it is much larger than normal and will need to be removed, which is not easy but it can be operated on successfully without any loss of quality in life.

If it is a tumour an operation will also be probable but other factors will determine treatment and operations.

The Consultant believes we are looking at more of a ‘probable’ than ‘possible’ chance that it is a tumour. Naturally I want to discuss this will family first so please do not allow any of this to become general knowledge at this time.

In order that I able to cope with major surgery I have to be a lot fitter than I am and my body needs to be functioning properly, which it is not due to the blockage. They are therefore looking at getting me into surgery for another procedure to open up the tube from my liver to the pancreas by the insertion of a ‘stent’, which is a straw like tube that will allow the stomach to function, the jaundice to subside and therefore permitting me to a eat and put on weight again.
This operation could be as soon as this Thursday!
If not then the week after.

I have now lost 4 ½ stone since June, which is concerning them most. In addition to this the pains, when walking, are out of the ordinary and need to be assessed, in the meantime I have been taken off the pain killer Tramadol and put on Morphine.

Friday 10 October 2008 - Another step closer

Unexpectedly we are another step closer to knowing as this morning I received a phone call from the Consultant Surgeons Secretary requesting I attend an appointment with the Consultant, Dr Khan, this coming Monday at 13.00. So it would appear that things are as bad as we were expecting and it is only a question of prognosis as we believe the diagnosis has been made without telling us as much.

Thursday 08 October 2008 – Home visit

Today was going to be a waiting day, firstly for the post, then for a home visit and at any time and less expectantly a call from the hospital.
The postman came and went and we had nothing from the hospital but as promised we did receive visitors from work for the first official home visit. Within minutes of the HR officer and office manager sitting down they had promised to extend my period of sick pay for a further month or at least until we know for certain what we are facing.
The meeting panned out quite well and my partner appeared a little more relaxed knowing that we can also expect counselling should it be required through work.
The home visit came to a natural conclusion after one hour and coffee and cakes.

It was with some relief knowing that my partner Zoe was not feeling so alone in all this turmoil and that support was at hand. So we were not expecting what happened just 45 minutes later when I received a phone call from the hospital to tell me of an appointment that was being made for me at the University hospital in Coventry.

I am now waiting for an appointment to come through within a week for an Endoscopic Ultrasound Scan [EUS]. We have searched the internet and these relatively new machines are used primarily by oncology departments and hospitals. The EUS acts as an ultrasound scanner would and is able to view surrounding organs, presumably for damage, as well as being able to take biopsies.

Once again we are left expecting and fearing the worse but we are one more step closer knowing for sure.

Tuesday 07 October 2008 – CT Scan follow up, company Dr appointmet

We had spent the weekend worrying about the outcome of the CT scan and were expecting the worse, the only thing we were not sure of was just how bad the ‘worse’ was going to be. It was a very emotional morning on Monday when we dropped our 3 ½ year old off at her Grandma’s whilst we went to the hospital for the CT result.
When we were finally called into the consultant’s room we were told there was a blockage, which we already knew, however they could now pin-point it to being in the Pancreas, which is part of the duodenum. They could not, or were reluctant, at this point to commit to it being of a cancerous nature. My case will now be referred and assessed by the duodenum team this coming Wednesday, but we have to told to still expect the worse and anything less than a tumour would be a bonus!
So in reality we are no farther forward in knowing what it is that has caused the Jaundice, whether or not it is related to all the on-going problems I have been having over the last year or to what extent the treatment will eventually take?

We also had an appointment with the Company Doctor who once again was very supportive at our time of need and has arranged for my manager and a member of the HR team to make a home visit, the first since I have been off work in almost twelve months. My sick pay is due to finish toward the end of this month and soon, depending on the nature my current illness, we will be left with no decision other than to rely on the state to provide for us. We are hoping that until we know what the is causing the blockage is then the company my consider extending my sick pay a little longer so we can make the right decisions financially to assist us through this period.

Paul Newman

One week ago today Paul Newman finally lost his fight against cancer, Sunday 28 September 2008. He was a remarkable man who not only gave us much joy in his films but also gave much in time and money to charity.
If I live to 83 I promise to do more than do currently over the next 34 years to help those less fortunate than myself.

Thursday 02 October 2008 – CT Scan and follow up

Yesterday I had the CT scan and it was worse than I remembered it, especially with the introduction of the sipping of an aniseed flavoured drink for 2 hours prior to the procedure! This was then followed by a full cup and a half of the stuff before going on the bed for the scan itself. I had also forgot how horrible the injection was that pumps chemicals, iodine I believe, into your system that makes you feel hot and want to go to the toilet so much that you end up clenching your bum cheeks together in case of accidents!

I was told the waiting time for results would be between two to three weeks however this morning when we came back from town we picked up a telephone answer machine message telling me I have an appointment fixed for this coming Monday with reference to the scan results! We can only surmise as to what they have found but I guess the only question is how bad is it?

Appointment secured

Yesterday, to try and get things moving along in my favour, I phoned the Xray department at the hospital and asked about the progress on my CT scan appointment. Unfortunately their idea of an Urgent scan was somewhat different to that of my consultant, GP and me. I was promised that I would be given the next available cancellation which meant I did not have to wait for a two to three week appointment. True to their word I received a call today and I am now booked in to be seen on Wednesday of next week.

In the meantime the itching is getting worse, despite the Colestyramine and the pains in my stomach and back make it almost unbearable to walk any distance.

Monday 22 September 2008 – Colonoscopy results

The good news is that the Colonoscopy investigations and biopsies found nothing and therefore my stomach is clear of anything too serious. On the down side they are non the wiser what has been causing me the troubles with my back and stomach and even more worrying is the urgency now being given to the Jaundice. It would appear that there is a strong chance the obstruction maybe related to a tumour. It may also be nothing more than a Gallstone but I have to wait now for a CT scan to being the next round of investigations.

I have been prescribed Colestyramine to help alleviate the itching [one of the symptoms of Jaundice] as my back and chest look like a battlefield from all the night time scratching.

If things get any worse the specialist has told me to go straight to A&E and get myself booked in, that is quite disconcerting.

Friday 19 September 2008 – Jaundice

Today is my birthday and yesterday I discovered I have Obstructive Jaundice, which means a there is an obstruction (blockage) in the bile duct and the bilirubin (chemical in the blood) cannot leave the liver. This type of jaundice is usually caused by a gallstone, or a tumour or cyst in the bile duct or pancreas.
My GP has given me a handwritten letter to take the hospital on Monday where I am due to meet the specialist following my Colonoscopy six weeks ago.

Tuesday 13 May 2008 – Oncology outpatients appointment

Today I spent longer than I would’ve liked at hospital waiting to be seen by a consultant. I had been waiting considerably longer than the woman and her daughter in the next cubicle, but still they complained after ten minutes. More of those two in a moment* but for now the good part I have been given the OK for another three months. I do not get overly worried about these checks-ups anymore as the pains in my back and the impending Pain Clinic appointment for tomorrow are occupying most of my thoughts at the moment. I am hoping they can remedy my on going back pains.
The head pains from my last entry have disappeared since reducing my intake of the Pregabalin.

*And so, back to the women in the next cubicle.
The mother, who was ill, and her daughter who moaned after 10mins of not being seen, were in the next cubicle to me as we waited to be seen by a consultant. When a consultant did check the mothers scans he then left the room, probably to consult another colleague, and when he returned he attempted to explain that there was scar tissue on the mothers chest and other checks needed to be carried out, at which point they complained again about not having the checks done locally to where they live [they live within a 20 mile radius of the hospital the checks were to be done at!].Then they mother tried to explain that she had no idea why she should have scaring of the lungs despite being asthmatic and a chain smoker!! The silly wheezy woman did not realise that they don’t do CT scans and then recommend MRIs on a fekkin whim! The consultant told them the xray and CT scan results were a 'bit wishy-washy' and needed investigating! They did not have the necessary brains cells between them to realise what was NOT being said!It’s an oncology department for heavens

Thursday 27 March 2008 – Pained, but hoping to bowl

I am not too sure if it is a symptom of seeing my GP on a regular basis that makes me aware of his inconsistency, but I have begun to wonder if I should not ask for a second opinion on the pains I am currently experiencing. My GP appears very thorough and my company Doctor has concurred that he must follow this line of course for pain management. I am also under the consultant at the oncology department at the ROH, however, this is not the same unit that carried out the operation on my lung which is apparently the cause of my discomfort now.

My GP today, following a phone call with him, has decided to increase my tablets by one day for a week, and then two the second week and finally to three in the third week, making a total of 600mg of Pregabalin. He has also said once again that he may refer me to a pain clinic but now he is also saying that perhaps he should contact my consultant(s) to discuss my condition.

My GP is away on holiday now for two weeks so I will give these tablets one last chance to work their magic or else I shall have to hold my GP to his latest idea of consultation followed by pain clinic.

If I am truly honest with myself and everyone else I am really fed up with having to live with all the pain right now and I really do not believe that anyone understands just how bad they are at times.

I have not quite reached an all time low but I did reach for the whisky bottle to assist the painkillers this evening, and I do not drink! I will not be going down that road as I know where it can lead but one drop in my tea seemed to work for a while..

The next time I visit my GP I need to stay focused and get him to take a more proactive approach to get these pains under control.

It is the start of the crown green bowling season soon and I really had hoped to be ready for it, I will just have to take more painkillers and enjoy it as much as I can. I have decided to play on a smaller green this year and have joined a different club to the one I was with last year.

Monday 17 March 2008 – Company GP Visit

I saw the Company Doctor today and it was not as bad as I had expected, not that I knew what to expect. She went over my medical history beginning with the Primary cancer I had in 1992 to the Secondary in 2006 and the resultant pains I am now experiencing as post Op.
She is quite happy for my own GP to work his way through the various courses of medication until one is found that will enable me to function without too much discomfort. It still may come down to visiting a pain clinic but all avenues of medication have to be tried first.
I am still on Pregabalin with a view to increasing its dosage next week provided the side effects do not get any worse between now and then.

The recommendation of the Company Doctor is that she sends a report to my manager requesting that for now he looks into my being able to work a few hours a week at home until I am recovered enough to return to work on a programme of phased working hours.

I do not have a problem with this proposal as I am now able to spend longer spells at the laptop and I have even begun to drive our car again provided I am not experiencing any dizziness.

Thursday 13 March 2008 – Pending visit to company GP

I am due to see the company GP on Monday 17 March, next week, I have no idea what format that will take or what sort of an outcome is expected from it. I suspect they will want to see me return to work as soon as possible. I shall be taking as much paper work with me as I can just in case the company GPs stance is strongly in favour of my return to work whilst not fully fit.

If forgot to mention in my last entry how my GP has made a couple of errors in the report he has sent into my place of work.
The first refers to me still being ‘under the care of the chest (Cardiothoracic Unit) at the University Hospital’ where I had my operation. I have told him on more than one occasion that this is not the case as I was referred back to the Oncology outpatients at the specialist Orthopaedic hospital.
The other is concerning the screening I receive at the oncology outpatients I attend where he states ‘The Consultant teams perform regular liver ultrasounds and CT scans to monitor for any further spread of his underlying malignancy’, again this is not true. My Doctor assures me he has read this somewhere but could not find the reference for it when I asked to see it. As a result I phoned the oncology and asked where my GP may have picked up this information from and they were quite adamant, but still pleasant, about the fact that this is something they would never normally, if ever, do. After 16 years of attending the out-patients department I have to conclude that this is true as I only ever receive chest xrays.

I have noticed of late that my Doctor does not always listen to what I have told him and as a result he does not always log things onto his computer as he should.

I have now begun to write down any symptoms I have during my latest course of tablets and I will continue to print them off for him to read during future visits.