Poem on finding out you have cancer

I wrote this when I found out I had cancer, it is a window into my world at this time. I share it now so you can understand the feelings that we go through, those of us unfortunate enough to hear those dreadful words, "yes, you have cancer".

Past tree lined streets and moonlight ways I drive, still as the night while all the world scrolls past in a dream, like a film, with me in the centre

I do not want to arrive, for then I have to talk, to explain, and then will come the tears, the fears and all that follows. I want to stay in the car for ever, just driving from the doctors to my home and back again, never arriving

I pass the familiar streets, turn familiar corners and hurry home as I’ve done a thousand times before, I don’t want to arrive, to shut the engine down and sit in silence

This time I wish I could drive for ever more, from the doctors to my home, this time I do not want to arrive. To see the lighted windows, feel the warm wind as I walk up the path; hear the chattering of my children, the sudden laughter, and the dog barking as she knows I am home. The cat will rub against my leg; my wife will hug me with a smile, and look deep into my eyes to search for truth which I do not want to give her.

What's been happening!

Hi all
 A bit of a late post, but been through a difficult time over the last 3 months.
I was doing well up until August and then developed severe pains in my arms and shoulders, also my neck. This went on for a few weeks, got worse and so a visit to the Dr was made.  I had blood tests which were ok then an Xray on my shoulder to see if it was a 'frozen shoulder' but that was deemed ok too. It carried on and then I saw my Consultant who requested a bone scan.  You can imagine how this feels, I was doing well and now it looked like 'something' was coming back or happening.

I had been mentoring a fellow sufferer through June and July who unfortunately died at the end of August. He didn't make it. As so often happens with this cancer it won, but I must stress that survival rates are not as bad as painted in the press recently, you may have seen these articles.  I think they were very misleading, especially the statements about drinking and overweight contributing.  I know many people who have this cancer and most of them NEVER smoked and are NOT overweight.
Still it has been a personal worry. My results came back and were clear which was a huge relief. I honestly was begining to think that it may be bone cancer. I had many sleepless nights.

So here I am now, been through the mill a bit, worried a bit more, but tried to keep it from my family and friends (they have been through enough)
I still have the pains, but am learning to live with them. My fantastic Macmillan nurse Caroline says it is probably 'old age', and I hope she is right.

This time last year, today, I had my operation. My brother Keith phoned me to tell me that one year ago today Sara my wife phoned at 8:30am to say I had just gone into surgery. She phoned again at 3:00pm to say I was still in, then she phoned at 6:30pm to say I was out, in intensive care and had smiled at her (I think it was wind!)

So here we are a year later and so so gratefull to all the NHS people who looked after me and made this possible. The chemo worked, it shrunk the tumour, the operation was had and now it was recovery time. I will continue the Blog now from this point on, with a view to helping those who go through it.
Please remember that if you or anyone you know has symptoms of reflux, difficulty in swallowing, etc or something not right in your throat, get it CHECKED out, and if you are not happy and it continues, DO NOT LEAVE IT and hope it gets better, keep on until you KNOW what it is, it may save your life!
much love and health to you all
Bryan

What's been happening

Hi all
Sorry for the delay in updating my post, I have been having a bit of bother lately, due to possible strangulated hernia in operation wound site, followed by a severe infection. Ho hum ain't life great!!
Hernia turned out to not be strangulated, what a relief, hate those strangulated bits and bobs, gets in the way of living (smile) Infection cleared up now after a spell of antibiotics, so back on a reasonable level keel again.
For those who asked, my knee is really crap (excuse language) hurts all the time, the joint goes out every day, sometimes I can walk and sometimes I can't, but I am really good at sitting and watching the world go by. Only real problem is lack of sleep as it wakes me up a lot. BUT the good news is that if I keep on getting better then there is light at the end of the tunnel and I may be able to have the knee replacement next year Woot woot!
I looked at my diary for last year and will post this soon, but wanted to get something on here as I bet you all thought I had gone away (smile)

Chemotherapy July 12th - August 3rd 2010 and some tips...

Weight loss
Well what a 2 weeks that has been! started at 16st 13lbs (237lbs) and down to 15st 11lbs (221lbs) a loss of 1st 2lbs(16lbs)

Eating

Can only manage very small amounts as can't swallow, and need to supplement with energy drinks, hence the weight loss as not getting much food inside me

Taking Chemotherapy drugs
still having to dissolve in warm water as can't swallow tablets and each session takes about an hour to get the stuff down. I keep trying to be quicker but am sick, so have to sip slowly and force it down, but at least it works.

Side effects of Chemotherapy
When I came home from the first 'all day session' on the 7th July and started taking the drugs I felt sick, but the tablets they give you for the first 5 days help stop this happening, however one of the effects I had was lack of sleep and agitation. I would sleep for a bit but then get very agitated and restless, getting up in the night and coughing up phlegm, back to bed for a few hours and then up again.  I would go down to the bottom of the garden and cough and cough, getting up phlegm and trying not to be sick. We are surrounded by fields so I was not too concerned at the neighbours hearing me, although the cows in the field came over to see how I was and lend their support. The night can be peaceful and calming when you are ill and after a bad session I would sit under the stars and get my strength back, and think about the future and what was coming up for me.  I must admit that at times I cried, I know this may sound like self-pity, but honest it was really hard to remain positive. No matter how much support you get from family and friends (and boy I had a lot of support) the bottom line is that you face this alone. It is you who go through it, you who are sick, you who face the future, no matter what it will be. And it is you who has to come to terms with your own mortality.
On hearing this news I became very practical, men tend to do this.  I made sure my will was up-to-date. Bought a funeral plan, and listed all the jobs I needed to do in case I didn't make it.

Back to the side effects, I developed sores and redness around the groin area, treated with Sudacreme. Developed tinnitus with loud ringing in my ears and dizziness, felt very unsteady.
Got a runny nose and took temperature regularly, this is the one to watch, because your immune system is very weak, as a result of the chemotherapy,  you can get blood poisoning very easily.  Any infection, rise in temperature is very serious and you need to go straight to hospital.  I kept an eye and was alright, this time.
I developed incredible constipation, just could not go, this was a result of the chemo. I had a word with my chemo nurse Caroline Marshall. who suggested a laxative from the doctor, also through this time had to stop taking the chemo about half way through as started being sick and just could not keep it down, this happened a few times, but eased off after a few days and I got back to 'normal'.
Got very tired and had to lie down in the afternoon, I couldn't keep  my eyes open and needed a couple of hours before I could get going again, this was the same all through chemo for me, very, very fatigued.
I developed pains in my chest, a little on the 16th July, more by the 23rd, it was coming and going. On the 24th I phoned the hospital as pains bad, they told me to come into A&E straight away. This was at 10:35 at night. Arrived in Lincoln County and was shown to an area away from others, as still very susceptible to infection. You carry your red book with you at all times, and this lets them know you are on chemotherapy. They did tests, blood pressure, blood tests and I saw the Doctor at 3am. She said heart ok, but need to keep an eye on it. One of the side effects of the chemo can give heart attacks, so you have to watch it.
24th of July was also memorable as my hair started to fall out (18th day on chemo). It came out in clumps, from different places, mostly the side and back of my head at this point.
I went for blood tests at Louth hospital on the 26th in preparation for my next 'all day session' at Lincoln. Appointment with the Chemo Doctor in Lincoln on the 27th July to check how I was doing and have a look at my blood levels. This is to see how the chemo is affecting you and whether you can go for the next session. My levels from the Louth visit were low so they took them again and they were ok, so back into Lincoln on 28th July to start my second 3 week cycle. Got home at 6:45 had tomato soup and first chemo, again dissolved, was ok but got very sensitive legs and itchy especially from the knee down and especially the right leg. Very tired but eventually got to sleep.
Result the same as the last session, very tired, hard to take chemo, couldn't eat very well, constipation, dizzy, tinnitus and feeling sick all the time, especially the first 5 days.
Have developed a pain in right arm, an inner vein has collapsed as a result of the chemo being pumped in all day and is very sore. Have to keep an eye on it.
The dietician has been in touch to review what I am eating and help me balance my diet.
That's all for now, I'm tired (smile)
Bryan

Still taking the medicine... an update

July 28th 2011 12:00
Just to let you know that I will be doing a post next week looking back over the first 3 week chemotherapy cycle. I thought this would be better than a day-to-day tale, as that could get repetitive and boring!
A lot happened over the first 3 weeks, many changes and side effects, so I hope it will be useful to those who are on the same journey, and those who may care for them... see you next week.

Just to clarify.... when and why this diary was written

Hi all

I must make sure that you all know when this diary was written, so you don't think I am going through this now in 2011

I started keeping a diary on 7th July 2010, I did this to help me cope with what was happening and to be able to look back and learn. I was facing 3 cycles of chemotherapy, (called ECX). A day in hospital then 3 weeks at home taking tablets, then repeating this another 2 times.  After this was surgery, if all had gone well. To be followed by more chemotherapy.

So here in July 2011, after the chemotherapy and surgery last year (and more chemo in January 2011) I decided to try and help others who may get this, and those who will care for them. The statistics for survival of this cancer are not very good (87% never even get the chance of surgery - they are diagnosed too late) and I am trying to raise awareness of this disease so that others may not get it.  I also want to help those who may have it, to understand it better, the possible side effects they may encounter and to help give them and those who care for them hope.  I also want to educate Doctors and other health professionals as to what we, as patients go through.  this may help them understand and serve us better.  Most of the ones I have come across have been fantastic, but, in the words of my Doctor, "Bryan you are an expert patient, who knows better than anyone who hasn't been through this, what it means".

So, there you are, this was last year, and I write it now in 2011, with the hope it helps. 
I am still recovering as we speak, have some health issues and obviously hope I will make a full recovery, but I have no rose tinted glasses as regards this killer. It's one day at a time and live each day as if it's your last.  Thank you for reading this and the marvellous feedback I am getting, from this site and my posts on Facebook, Twitter and recently the Macmillan cancer support website.
As this blog develops I will endeavour to share all my experience and tips to help others. Any suggestions or comments are welcome, and if you just want to chat, that is ok to.
Be positive, its how we live our lives that count, everyone can make a difference, it just takes doing it.
Bryan

Chemotherapy the first 5 days..

July 13th 2011
Well looking back is interesting; it's like another person back there, but oh so real. Chemotherapy can be different for each person and each type of cancer, so please read this post with that in mind.  My journey may not be another's.

July 7th 2010
After coming home and starting the tablets things started to happen fast, first there were the headaches, itchy legs lack of sleep and then phlegm, lots of phlegm.
On the 7th I recorded getting home, feeling exhausted and couldn't sleep after taking the tablets, bed at 10pm up at 12 midnight, very restless, got back to bed at 2am and slept a little until 7am and then got up.
8th July
I had an energy drink at 9am for breakfast and took the anti-sickness pills (1 large and 2 small). Had a hot drink to loosen the phlegm before I could eat and take my chemo tablets. Dissolved 2 tablets in warm water and had custard to help them down, sipping slowly to ensure they go down without being sick, started 9:40 finished 10:20. The day passed by feeling very tired and unwell, but my family and friends cheered me up and I am so lucky to have them on my side. In the evening I started again, took some thin soup at 7pm and started on the sickness pills, and was sick, oh well, just couldn't get them down, lots of phlegm and realised I haven't had much water all day, feel very dehydrated. I had to force my gullet open with gulps of water till it cleared, then tried the chemo tablets, again dissolved in warm water, managed to get them down with lots of hiccups, and trying all the time to keep it down. Finished about 8pm and kept it all down, another day over.
9th July
Up at 2am sick again and coughed up a lot of phlegm, but feel better after and slept again. Had some hot tea before the morning routine and stated the pills at 9:55 and finished at 10:30 a good session!
Each day I am also taking reflux tablets (Omeprazole) and these help reduce acid. Today I had homemade chicken soup (strained of course) but oh so good, then my wife Sara made me a glass of carrot and apple juice, don't ask me why these two but it seemed to really do me good and became a staple part of my diet. You have to trust your feelings for food while going through this as your body does let you know what it needs and doesn't like, trust this, it takes a while to tune in, but it is worth it.
10th July
I slept better last night, and I needed it. Off we go again, hot drink, get the phlegm up, have an energy drink (these are prescribed by the Doctor) and start the tablet routine. 9:15 to 10:00 all went well. Had a milk shake for lunch, with a banana in it, as I am short of potassium, then more home made soup, but difficult to swallow and with the phlegm took a while to get some of it down, then sicked it all up again, oh well.
Food for me has become energy drinks, thin soup and custard, what a choice, but the main thing is getting the tablets down and allowing them to do their work, so it's a case of digging in and getting on with it. It's funny everything is, hard to get up (phlegm) hard to get down (food and tablets) and then hard to keep down (everything), but as long as the tablets stay down I'm doing good.
11th July
Last night was not good, up at 1am phlegm and sick and then again at 3am.
Took Omeprazole at 8:25 and then the sick pills and an energy drink, stated chemo at 9:50 and finished at 11. Lunch was apple and carrot juice, (1 cup) followed at 2:30 by some spinach and broccoli strained soup, (1 cup). I got very tired and rested from 3 to 4:45.
Off we go again at 7pm with sick pills, energy drink followed by the chemo tablets which I finished at 8:40. God the taste is awful and I have taken to sucking pineapple ice cubes to help with this and the dry mouth, which has started.
This is a bit delicate but I should mention that I have not been able to go to the toilet (number 2's) for 4 days now, this is one of the side effects from the drugs and needs to be managed well, or problems can occur, more of that later. I will mention all that happens to me in this blog and will not leave anything out, as those who go through this and those that support them need to know what can happen and how best to get through it, sometimes this will not be pleasant reading, so skip those bits if they offend you.
12th July
Took the normal pills and energy drink at 8am and then started the chemo which lasted from 9:40 to 11:10, throat still nearly closed up and very hard to get this stuff down, it's sip, sip, sip, wait a bit and then sip again.  If only those Doctors and nurses could see me, when they talk to you it's "you just take these tablets, so many in the morning and then these ones at night. LITTLE DO THEY KNOW! Maybe they do know and it's just me but God this is hard to do. It tastes vile and wants to come straight back up again.
Spinach and broccoli soup again for lunch. A tip on the soup, Sara (my lovely wife) makes it into frozen cubes for me and then I can have it when I want it, either 3 cubes, or if feeling greedy 6! Just put in cup and microwave till hot, lovely. This evening I had a small amount of quorn and potato, mashed up fine, I managed to get it down and wrote; there is hope - I hope!. Started energy drink and chemo at 7:30 and finished at 8:45, another day gone.
So now I am into a routine, of tablets, thin foods, fighting to get phlegm up and keep all the other stuff down, and not be sick all the time, still no toilet, still very tired and some side effects starting to kick in. But me and the chemo, (or 'the chemo and I' for the purists) are on our journey, with a purpose, and that is to beat this bastard!!

All day Chemotherapy - the start of it

July 7th 2011 - NOW
Sitting here writing this on 7th July 2011 brings back so many memories of what happened a year ago.  I can only write so much and have to leave out a lot, but I hope this gives you, dear reader, a taste of what it is like for those who go through this.  I will tell the tale of those who supported me on this journey later. The wonderfull family and friends who helped me through this. But for now lets go back one year to the start of my chemotherapy journey

July 7th 2010 THEN
Well what a day that was....
In the Ingham ward at 9am, the journey there was full of anxiety, fear and then resignation, but hope was there as well, At least I was doing something now to fight back. After 4 months of no solid food, sipping thin soup and strained porridge, gagging on energy drinks and wondering if I would ever eat a solid meal again, now began the fight.  I was told that the chemo would probably shrink the tumour, this would enable the operation to take place and maybe I would be able to eat again.  Now that is hope!
Into the hospital reception and after a short wait I was shown into the suite were the drugs are administered.  I felt like I had joined a club.  There were other people there, some waiting and some already connected up. Machines constantly beeped and nurses went about their duties quietly and cheerfully. I was shown to a chair and a nurse confirmed my details, then a warm pad was placed on my right hand, this helps raise the veins for the needle.  The drugs arrived and 2 nursed checked them off and ensured they were for me.  Everything was in order and the dreaded cannular was fitted into a vein on the top of my left hand.  It was not too bad, I had had worse in the past.  The first bag of fluid was hung from the stand and connected, this was a saline solution to flush my kidneys and hydrate me before the strong stuff, this took 2 hours.  Next was a bright red fluid, that I was warned would come out the other end as red as it went in, so not to worry. After 30 minutes another large bag of fluid arrived, covered over with a brown bag, "to keep the light out" as it is sensitive, this one took another 2 hours.  Sitting there watching these drugs go into me was strange, I again had time to reflect on my journey so far and what the future might bring. All around me were men and women, some with hair, some without, most smiled at me, some you could see were well on the way in their own journey and some like me looked nervous and scared. There was little noise except the constant beeps from the machines, the nurses taking people off and putting new people on, as we all moved through the process.  Machines would act up and demand attention and the nurses would fix, readjust and get them going again.  We all sat there watching the drugs drip into us judging how long till finished and either the next bag came or we could go home.  A lovely lady came and offered me a sandwich, "do you have any soup" I asked, " I can't eat a sandwich", she smiled, "yes got some tomato soup would that do"?  "yes please", "would you like a piece of bread and butter with it"?  "no thank you I can't eat bread and butter",  She looked at me, a little pity on her face. "Oh I see, well I'll get the soup".  It was nice.
Sometime later the sensitive drug ran out to be replaced by another, more robust (that didn't need covering up, and off we went again for another 2 hours.  Finally with another drug hooked up, to replace fluids and boost potasium levels, and another 2 hours, it was over. I was given various boxes of tablets, this for sickness, that for sickness and another, I suppose for good luck.  And last but not least the main course, the chemotherapy drugs I would take every morning and night for the next three weeks. "Just swallow them with some water, two in the morning and three at night, always the larger dose at night". I left at 5pm.

So that night I tried to take the tablets but they would not go down, they were too large, there was no room in my gullet for them.  The only thing I could do was dissolve them in water and sip until they were gone.  They tasted foul and that first night it took me an hour to get it all down.  As I lay in my bed awake at 2am with a headache, itchy legs, feeling sick and restless as anything I thought, "well at least I've started the treatment, one day at a time, one day at a time", and I drifted off to sleep.....

Chemo in hair out....

Diary 6th July 2010

Well this time last year I was preparing for the start of my ECX Chemotherapy, one year ago tomorrow in fact.  I was told that my hair would fall out, fact, so...... I visited my friendly barber Keith and asked him to cut it all off. "What" he said, "all of it". Yes I said and explained I had cancer and was about to lose it anyway.  He was really nice and took a small patch off and said, "are you sure" looking in the mirror I could see what it would look like, "yes go ahead, all off, but save a bit for my wife. He smiled produced a small plastic bag and discreetly put some in and handed it to me , then it was cut cut cut, and soon all gone.  Who was this bald man I saw before me, and what would the family reaction be.  Oh well, only one way to find out.  Home again and I walked right in and watched my wife's face, she smiled and said, "It suits you", running her hand over my head.  The children were ok and they said it suited me too.  I don't know why I didn't do it sooner (smile).
So to bed that night and lying awake wondering what tomorrow would bring. I was being picked up between 7:30 and 8:00 by the wondeful volunteer drivers and due to be in the Ingham ward for 9am.  I was to be on a drip all day feeding the stuff in and finishing about 5:00, so it was going to be a long tiring day..... time to sleep.

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)
Bryan

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.......

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

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.......

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.

My Oesophageal cancer - the way it started

Thought I would tell you my tale, how it started. Some 6 years ago I nearly choked, some food 'went down the wrong way' or so I thought. I was alone in my car in a car park at Seascale in Cumbria, The Lake District, it was winter and I was alone, I had just finished work and as it was winter it was dark, raining and a horrible night.  I fought for breath and really thought I might die there all alone.  My throat had tightened and I could hardly breath, each breath was a labour.... in.... out.... in... out, one at a time. Gradually it passed and after about five minutes I could breath almost normally again.  In my hotel room I phoned my wife and told her what had happened, but said I was ok now and not to worry.  Maybe I was eating too fast or the food went down the wrong way.  A few months later it happened again, while eating chinese food and I put this down to maybe an allergy to something in the meal.  You look around for a reason when this sort of thing happens, you clutch at any solution, and say 'yes, that must be it'.
This went on for a while, on and off over a couple of years. I went to the Doctors about it, but it was put down to indigestion, a reaction to something, but not worthy of further investigation, at this time. I was prescribed tablets to reduce acid and that sort of thing and carried on with my life.Time went by, it happened again on and off and then after a particulary bad 'reaction' the Doctor refered me to an allergy specialist, who listened to my story and decided it was probably my vocal chords reacting(going into spasm) to the vinagar in the food, he thought this had triggered the restriction in my throat and that made it difficult to breath.  I had no tests, and no follow up. That seemed to be the end of that avenue and so I got on with my life, until it happened again.
I learned to avoid foods that 'appeared' to make me react, I then started to drink after each meal "to help the food go down ok". Boy was it slow and insiduous, the difficulty, then drinks to help swallow, then avoidance of some foods and the gradual changing of my diet, to eat easier and easier food.  The final straw came just over a year ago when I ate something I thought would be ok, but it didn't go down and the customary drink didn't help either, In fact I choked, couldn't swallow, was sick, couldn't breath for a while and generaly thought, this was it!  My wife took me to hospital, quicker than calling an ambulance, and after a worrying time and reasurance that "I was ok now" the Hospital Doctor advised me to see my own GP, the next day. And so it started....

I post this to help those who may go through a similar experience and welcome feedback and discussion, I will help others who find themselves saying... "this is happening to me what do I do"!

It starts

This time last year I knew something was wrong, I could not swallow properly and after some tests for allergies and an emergency visit to hospital (as I thought I was choking) my Dr refered me for 'tests' at Lincoln Hospital. This was to be the start of the fight of my life, my family going through hell and back, and amazing support from friends, family and the marvellous staff in the NHS.  I share this with you to help those who find themselves in the same position, are scared and wondering what the future will bring.

As I speak April 14th 2011 I am in remision and hopefull for the future, but this is the journey to now......

My first post!

This is my first blog, so go easy with me. I hope to bring you a world of experience and thoughts on art and life, as I have seen it.

I would like to share my experiences with you in Art and Life and my journey through Cancer and I hope this helps you in your journey.