Monday, 27 June 2011

Welcome to the wonderful world of Chemotherapy....

Please note this is a diary of LAST year, to help those who may need support, encouragement and a friendly person on the other end of the line, to help them through it. I am still here as I write this and hopeful for the future, more on this when we catch up with me.... (smile)

June 18th 2010
The journey to Lincoln County Hospital was tense, after the bombshell of my chance of survival yesterday (with the surgeon) I am still a bit in shock, but at least now we are doing something about it. There is hope, even if not much at this point.

My goodness finding a place to park was tough, but we got there in the end.  Into the Ingham Suit and gave details to reception, she got my file folder out ready ( I noticed it has grown a lot since the first thin volume was handed to the Dr, all those weeks ago). After a wait it was into see Dr Stokes, she went over my notes and explained the treatment I was being offered, which is called ECX. I had some general questions and then raised the possibility of having a second opinion on my cancer and treatment.  Boy it was tough to ask for this, I felt as if I was questioning their judgement. But after discussing it with other cancer professionals they assured me it was fine to ask for this, after all it was my life and I needed to know I was getting the best treatment to give me a chance to survive.  So if you want a second opinion then ask for it, the Dr's do not mind.

I was lucky in having a very good friend who helped arrange for my case to be reviewed by Professor David Cunningham Consultant Medical Oncologist at the Royal Marsden in London.  I put the request through my GP, as this is the route to go and after all my records were sent to his secretary (from Lincoln County Hospital) he reviewed my notes and replied to my Dr entirely concurring with the diagnosis and the chemotherapy regime, followed by surgery.  This did have the effect of making me feel I was getting the best treatment possible and removed any doubts I had.

I had to sign another Patient/Parental Agreement to the Administration of Chemotherapy. This was for preoperative chemotherapy ECX, Its purpose being "to downsize the tumour and reduce the risk of recurrence" I am all for that!!.
At this point you also get all sorts of leaflets and pamphlets to explain this and that, some with nice diagrams showing before and after, all very interesting.  I had already been on the Internet viewing everything there was to see about my cancer, from case reports, statistics (this can frighten you big time) to abstracts in medical journals. I had also looked up all the Dr's I was involved with, boy some of them are published all over the place, and again very interesting stuff.
So, you get a book, red on the outside called 'Your chemotherapy record' and you have to read it carefully and carry it with you at all times during your treatment.  I was now ready, treatment to start with an all-day session in the Ingham Ward on 7th July.
Well this is enough for this post, hope it's helpful, more later
Keep smiling; keep positive, you can beat this.... I know (so far at least - smile)

Monday, 20 June 2011

What the doctors said... this time last year

June 17th 2010 I saw Mr. J. P. Duffy, Consultant in Thoracic Surgery at Nottingham University Hospital.
It was a long trip there from Lincolnshire (near the coast) and thoughts were constantly buzzing around my head, what would he say, could I have surgery, when, what would it be like, what are my chances of survival?  all the usual things that a cancer sufferer thinks.

The appointment was for 3pm, but we didn't see him until 4:45, he was very busy.  At last we were shown into a room, and sat on a couple of chairs and in he came. It must be hard for him, he does this all the time and the survival rate for this cancer is not very good, so he has to be business-like, professional and to the point. After a quick examination, some questions and a brief chat he laid out the options on three sheets of yellow paper. My wife and I watched as he explained with diagrams. "These are the options, do nothing, fit a stent, chemotherapy, radiotherapy, surgery" He then circled surgery and explained that this is the best approach". There followed a list of the risks, again drawn on the yellow sheet. "5-10/100, 5 to 10 out of a hundred don't make it through the operation, 5-10/100, again 5 to 10 develop a leak, then there is bleeding, infection, pain in the wound and the possibility of a hoarse voice". I was doing ok with this but then he wrote 'Cure' and under this put 1 in 3. I looked at this and thought "well that's not so good". I then looked at my dear wife who had turned white and was almost falling off the chair. We looked at each other, cried a little and knew we had a fight on our hands. Again the reality hit me; this thing could easily kill me. I am an optimist and it would be easy for me to say I immediately felt sorry for the other 2, as I would survive, but it's not like that, it hits you hard, you are forced to face your mortality and all that means.  Here was the reality of cancer, the personal road you had to travel and where that was leading.  I am sure Mr Duffy was talking some more but I think my wife and I had stopped listening after the 1 in 3 bit. There were diagrams of the oesophagus, the stomach and dotted lines showing cuts here and here and the sites of possible leaks, but we were not there anymore. We were lying in our shattered dreams. Thinking of the children and wondering how the hell we were going to tell them, and our family and friends would come later, but for now we both felt our life as we knew it had ended.
Another yellow sheet was filled in with 1) chemotherapy, 2) repeat CT scan, 3) Oesophagogastrectomy + Laparoscopy 4) something I couldn't read but with a bit about the neck and a question mark.
Mr Duffy explained it all well and pulled no punches, and I think we did well too, for two people in a state of shock.  Forms were completed, 'Patient Agreement to investigation or treatment' and then we found ourselves outside again, sitting in the car.  The journey home was a blur, with ups and downs between despair and 'we can fight this'
We sat under the apple tree at the bottom of the garden and held hands, we cried, we hugged each other. At least now we knew what we faced, together.
One down one to go, The Clinical Oncologist tomorrow, can't wait.......

Monday, 13 June 2011

Next steps.... into the unknown

June 13th 2010
Well, now I know I have the dreaded 'big C' what next.  I am to see Mr Duffy the cancer Consultant in Thoracic Surgery on Thursday 17th June 2010 at 3:30. This is at Nottingham City Hospital. Then I am seeing Dr Stokes at Lincoln County Hospital, in the Oncology Clinic on Friday 18th June 2010 at 10:20.

I am sure after these visits I will know more about my treatment and my chances for survival.

June 13th 2011
Looking back and writing this entry produces mixed feelings.  I am so glad I am still here to write this, but so angry that there will be people out there who have this cancer and don't know it yet, they may have had symptoms like me, and are just brushing it off, saying they will get better. There may be Dr's who are prescribing drugs for indigestion, in all good faith, while the cancer grows and spreads. You, a loved one or family and friends may get this, and if you do, then time is so important in your chances for survival.  I was reading an article the other day in the National Press which highlighted the bad record in this country of diagnosing cancer.  We MUST change that and get people aware, in time to do something about it!!. Help me by passing this blog onto friends and family, and we WILL raise awareness

Friday, 10 June 2011

1 year ago today......

Well.... this time last year my wife and I went to the hospital to see the Dr and get 'the news' and as we expected, it was bad.  He confirmed that I had oesophageal cancer and that it was advanced.
Although I was ready for the news, as the endoscopy picture looked pretty bad, it was still a shock.  Thinking you might have cancer and finding out that you really do have cancer is awfull, your world comes to a stop, your plans and dreams go out the window, and you are forced to face your own mortality.  what do I do now? what about my wife and children, my family and friends? how and what do I tell them.  What is next for me?

The Dr was blunt and to the point, I suppose he thought this was the best approach, he even said, "well we all have to die of something, sometime"  I admired his people handling skills, it must have taken him years to get so good (smile).

Next step would be my case going before the MDT (Multidisciplinary Team), this group would review all the test results and come up with a plan for me, to give me the best chance of surviving. So it's back to waiting, but much to do on a personal level.  Now to tell family and friends, this is going to be so hard.......

Saturday, 4 June 2011

Down the throat... and waiting....

God having a tube shoved down your throat is no fun, but waiting for the result is even worse!!
After the Dr sent me to hospital to have an endoscopy, and after having this I was told the next 2 weeks would be the longest in my life, waiting for the result.  As it turned out it was 3 weeks before seeing the Dr again, and for me and my family this time was hell, as you can imagine.  It's like having a death sentence hanging over you.

Must mention here that I also went for a scan and this could have extended the waiting time even more but I phoned and pushed and eventualy got that done a bit quicker than if I had just accepted what was offered.  Every week you wait could mean the difference between life and death.

The thing here is if you have any symptoms, don't wait, don't let the system grind along, YOU have to push it and make it happen, as quick as you can.  This cancer is terrible, 87% of people who are diagnosed do not get offered surgery, so that's only 13% who have that chance.  The earlier you find out the better.  I know this.