Blog 128 Tuesday 25th September 2012

I have had a letter confirming my lung operation at the Leicester Spire Hospital for next week. I also have to attend at the hospital this Thursday for a Pre-Op assessment. Secondary Bowel cancer has once again taken hold in my left lung.  My Surgeon, Mr Waller will be performing a Broncoscopy as well as opening up the original scars to remove the tumour .....happy days. Hey! this time next week it will all be over and hopefully drawing on the morphine!!!!

Reading all the hospital literature that has come through the post, I get DeJa Vu  yes !! I've definitely  been here before Monday 18th July 2011  I can distincly remember,  I went through the mind debate of whether to have an Epidural or not. I didn't, my anaethetist listened and come up with some other blocker. I may have to this time as it is my surgeon's preffered method of analgesia  

 

Blog 127 Thursday 20th September 2012

At 19.30 this evening the phone rang and a very welcome voice followed.... Mr Waller my Thoracic surgeon  Mr Waller apologised for phoning so late.............I wouldn't of cared if it was midnight!!!! He explained his view of the scans, and position of the tumour. Mr Waller explained, he would have to open me up again in the same area as before, (Blog 17 Friday 22nd July) but he would have to make the incisions larger in order to get to the area concerned. Well at least I now have a date and have something to aim at !! If it's anything like last time, Wendy will clear her diary, and work from her laptop in the hospital. The mum's at Hopes school will rally around and offer to look after Hope, Pick up and drop off etc. Appointments to be cancelled. Nobody likes going in for an operation but I'm sure that other cancer sufferers will agree, I just want this thing out of my body and 2nd October when my operation is scheduled, cannot come soon enough !! 

Blog 126 Wednesday 19th September 2012

Hey, suddenly got lots of visits from Brazil on the blog was it something I said ? "Ola Brazil"

Back on blog 117 16th July 2012 I blogged that I had received an NHS Letter "Out of the Blue" from Kettering Radiography department for a CT Scan on 25th July 2012 . This Scan was out of sync for my cancer surveillance. I queried the letter with my bowel cancer specialist nurse Mark Kingston of Kettering hospital  and was told it is a mistake. It should read 25th July2013, I should not turn up and to rip the letter up.

I wrote on blog 117 "Everything happens for a reason"   I did not go for the scan,  as It would have deprived someone else of an appointment,  I had a scan arranged by my oncologist privately......the scan that found the latest tumour. I have read this letter several times since,  the scan was for an abdominal scan only and would not have identified the tumour in my lung !! I have since queried the surveillance regime I am on .................apparently the NHS surveillance regime is correct.

Sorry to sound morose, but I'm certain that Kettering Radiography dept would not have seen me on the 25th July 2013 it would have been too late in my case.................the NHS has done wonderful things for me and my family in the past, but if you believe you have been wrongly diagnosed, as I was, or you believe you have been incorrectly categorised for your treatment, do not hesitate to question... question... question. I believe from my first incorrect diagnosis to this recent episode I may have extended my life expectancy by at least 10 years.

 

Blog 125 Tuesday 18th September 2012

Yesterday, I waited all day for the phone to ring for the results of my PET scan ........................and waited, it was a long day.............I phoned the thoracic nurse specialist that had been assigned to me ...............answer phone......I phoned my oncologist...............answer phone.......eventually around 4.30pm I decided to take "Jack" our Labrador out for a walk, I took my mobile just in case.............nobody phoned. Whilst I was out, my oncologist had phoned and left a message to call straight back. In our country we call that sods law  otherwise known as Murphy's law.

Good news the PET Scan only revealed the tumour in my lung and nothing else phew !! now we know what we are dealing with its a referral back to Mr Waller who performed my original chest operation. I have had a few questions about the latest tumour in my lung. Yes, it is still Bowel Cancer that has travelled to the lungs. I will be asking the obvious question on my next consultation, "How much more of my lung can be removed"? unlike the liver the lung does not regenerate. I have already had five tumours removed a year ago. The other day someone said to me "Its lucky its bowel cancer and not lung cancer that lung cancer is terrible"!!!  ........MMMmmmmmmmmmm

Wendy's Blog

It was a great relief to get that phone call from the oncologist yesterday, the whole weekend in the back of our minds hung the thought of what the PET scan would reveal. It is really difficult to stay positive, today on the way to Norfolk (I do a lot of driving in my job) I was saying things like....positive thoughts only, a half full glass and not a half empty glass.....release the anger!!!!

I must admit I did feel calmer, so now I just need to continue floating those thoughts through my mind a bit more often.

Blog 124 Saturday 15th September 2012

John is Radio Active

The Pet scan itself was no different from any other full body scan I have had, but the preparation was mind boggling!!

In a nutshell, I was injected with a low dose of Radio Active Glucose. Fludeoxyglucose (FDG) The theory is, that your internal organs such as brain, liver, kidneys, muscles etc all use glucose to function. Cancer cells also use glucose in high concentration. The PET scanner uses x-ray technology with the radio active glucose (tracer) to create a 3D picture of the inside of my body. The images will highlight any cancerous cells.

I was not allowed to do any form of strenuous exercise for 24 hours   (hooray!!!)   prior to scanning, this is  in order to keep the uptake of glucose in muscle to a minimum. I also had to fast for six hours prior. On arrival at the unit the obvious previous history questions and consent forms then a cannula in my left arm. This is where the similarities change. A Nuclear Medicine Technologist then attached a metal canister, to the cannula,  that systematically released small doses of the FDG whilst he also injected saline. I then had to totally rest for an hour. No talking, No walking. I am now Radio Active and must not come into close contact with pregnant woman or children in the next 6 hours. Although the first is not a problem I do have a ten year old daughter.

After an hour, I was escorted to a specific toilet with the above, " Radio Active" signs on the door and told to empty my bladder. I was then escorted back to the scanner, via a separate door and led into the machine.............................The scan will reveal the tumour already found, in my left lung the hope is that nothing else will be discovered .............once again we wait for the results. My Oncologist will then decide on what course of action, If its just the lung tumour its back to the Leicester Spire hospital and my surgeon Mr Waller.       

Blog 123 Thursday 13th September 2012

I have an emergency PET Scan tomorrow 14th September at GMT 15.50 I have been told to fast for 6 hours prior and arrive one hour before in order to receive a radio active injection, then lay back for an hour before the scan begins which should last about an hour phew!!!!!  My newly acquired tumour in my lung will soon be history!!!!!!!!!!!

A year ago today via blog 33, I wrote..................

"It has been two years, almost to the day, that a colonoscopy revealed my colon cancer in advanced stages. It has been four months to the day that a CT scan revealed polyp's on my lungs had changed in size and increased in number. Since then Ive been pushed, prodded, injected, anaesthetised, sedated, incised, clamped, stapled stitched and sewn. I have eleven incision scars across my torso, soon to be twelve. Ive attended Nine different medical establishments on two different continents for various procedures. I have seen more of my internal organs via video, photos and on surgeons VDU monitors than I have ever seen of my back, (for instance) ................but in all this time I have never felt ill.............. never felt as if I'm sick .........never felt unwell with the cancer, probably because I was lucky and caught it in time...............................".


I can now add to the above list a further two incisions soon to be five more and having been slowly poisoned with the toxic chemotherapy drugs, and to become "radio active" during my next PET Scan, I have been told I must not come into contact with children or pregnant woman for 6 hours after the PET Scan.

I have never felt unwell except with the chemotherapy.  With the latest Tumour now discovered, growing in my left lung. I am frustrated...................................... if I had left it to the NHS again, I would not have had a CT scan until July 2013, and this current tumour would probably have been my death sentence,  It is only because I have had the benefit of private health care that this latest tumour has been discovered so early, a CT scan ordered by the private health care Oncologist a full 10 months prior to the NHS Scan !

Sorry if I sound a bit tetchy today, but originally I had a mis - diagnosis by an NHS Doctor in Worthing of Irritable Bowel Syndrome all those years ago and it later took an Australian doctor to find my bowel cancer.

After this last episode I feel let down by the NHS thank goodness for private health care, even if it only prolongs my life by another  couple of years, it will be two more years with my family. Thank you to the family and friends for all the prayers the Lord is truly looking after me..................  

Blog 122 Monday 10th September 2012

Today, my Oncologist, gave me the devastating result of my recent CT Scan., a tumour has once again, invaded my left lung,  If you have read my blog previously, you may remember that in July 2011, I had an operation on both lungs to remove a total of 5 tumours. The operation was reported a success. A CT Scan was ordered after the conclusion of Chemotherapy in March of this year, and via blog 97, I reported that I had been given the "all clear".

The euphoria of "beating" cancer has been short lived. Now, I find myself being sent for a  PET Scan  (Positron Emission Tomography) possibly this Friday. A PET scan gives a higher resolution imaging and is used in conjunction with the CT for a much more detailed picture. (please click on the link for explanation) My lung surgeon Mr Waller of the Spire Hospital in Leicester, has been contacted by oncologist Craig MacMillan in preparation for surgery. I telephoned the Medical Insurance company "Simply Health" to keep them updated.....my sons, and my mother ...............and it all starts again.

I was foolish thinking that I could beat bowel cancer in such a short time. I was once told that the first five years are the longest. You are not officially a "Survivor" until after five years. I was confident that I had beaten the disease after the Chemotherapy, instead I took it on holiday to France with me..............................I am still fighting it and keeping upbeat and positive. Wendy is, as always very supportive, but I can see it is hurting her, especially after the news that I will not necessarily be offered Chemotherapy for a second time............as it didn't work, I wonder what else we have in the ...................arse-nal  !!!!!!! There is also lots of help for the loved ones of cancer patients MacMillan Cancer support I have been in contact with MacMillan when I was first diagnosed and they are very informative and helpful.


Wendy's Blog

The first time we found out that John had bowel cancer, I treated it the same way I treat life.....let us live it and get on with it. No mental anguish!! The second time it hit me really hard, I think it took me three weeks to once again face it head on, deal with it and get on with life. Today......I don't know? How do I support John, Hope and the boys....how do we cope? I know that this time it will take awhile but we will get over it and get on with life. I love my husband and my "kids" and I will do anything to protect them.........

Blog 121 Thursday 6th September 2012

Sad I know, but one of my favourite daily reads is the Mail On Line. You can check out what you want without being subject to the normal daily newspaper sensationalism.

Anyone who has read my blog before, will know that I sometimes refer to articles taken from the `Mail On Line' and today will be no different. Two articles has hit home with me, `He didn't need to die':  A wife's harrowing story after her husband was diagnosed with IBS and died of Bowel Cancer  and the second article Bowel Cancer soars by 120% among the under Thirties  an older article but goes to show Bowel Cancer is not only an older persons disease, and under thirties can be wrongly diagnosed due to their age.

Both of these articles caught my eye, firstly because I was diagnosed with IBS (Irritable Bowel Syndrome) and later found I had advanced stage Bowel Cancer.The symptoms are very similar and can easily be mistaken. Giles Cowley 41 the unfortunate person in the first article had a stressful job and lifestyle. Although I was 45 my Job was stressful and may not of been eating properly. My GP then diagnosed IBS without any further tests it was in fact the start of Bowel Cancer.

The second article caught my eye because,  as with the first article and IBS if you do not fit the profile of a person that is in the age group of persons likely to be effected by bowel cancer (Over 50) then your GP may diagnose wrongly. Our government still only screens for Bowel Cancer when you reach 60 in England

Who is eligible for screening?
If you are aged:

• 60-69 in England
• 60-74 in Wales
• 60-71 in Northern Ireland
• 50-74 in Scotland

By taking some simple steps to improve your diet and taking regular exercise can help reduce your risk of bowel cancer. So it is important to:

Diet & Exercise

• consider what you are eating
• eat plenty of fibre
• eat five portions of fruit and vegetables a day
• avoid processed meats and have no more than 500g of red meat per week
• keep active with regular exercise
• keep hydrated and avoid drinks containing caffeine
• know your alcohol limits and don't smoke
• know the symptoms of bowel cancer and act on them if you have any concerns
• take part in the Bowel Cancer Screening Programme in your area when you are invited. This involves completing a simple test which can help identify whether further investigation is necessary