Christmas Day....

The day started at 08.30 with stockings being opened...main presents wait until after dinner and Queen's speech.

Then at 09.30 we met up with the Third-Space crowd in the bandstand in Matlock Park for the usual Christmas Service. All had a piece planned but Fran decided to leave hers as she could see I was starting to struggle.

It was two notes for all to ponder...not necessarily there at the bandstand but anywhere the mood took us. I found the question about 'What would we think if everyone were celebrating our birthday in such a huge way?' rather amusing as I personally would see that the majority were not celebrating as I would like them to. I then thought of what Jesus would think about the way we as Christians and Atheists celebrate his birthday...would he be mad at the way it is celebrated..probably not mad, but I bet he would be a little dissapointed at the way much is made of whether or not a great Christmas is had by what presents are received!

The other one is, what would we be doing with our lives if Jesus had not been born...for one there would be no Christmas and we would not be called Christians...how many of us would believe in God as he still exists whether Jesus did or not. This one will take me a little more time to ponder...

Wendy's item was simple but made the biggest impact I thought...she had a shepherds crook, parcel labels and pens...we were to write as many names as we needed to of people who we wanted to bring before God at their time of need. Looking at those labels as they flickered in the wind was very thought provoking...

I did say to Wend that I expected my name to be mentioned at least 6 times on the labels and whilst I knew my name was there it doesn't need a label to show me how hard my family, friends in Matlock and friends globally are praying and thinking of me. I often see people in town that I know from one of the 10+ churches in our circuit, they stop me to tell me that they prayed for me that week. There are too many people to thank personally but you all know who you are and how much it means to me...I really do believe in miracles and whilst I seem to be struggling that little bit more this year than last I know there is still many chances for me and Christmases to be experienced.

Since being told that I have inoperable cancer I have been a little more reckless than usual with my driving...often pulling to a stop at Matlock train station with a hand-brake turn...to Charlotte's embarrassment. I am pleased to say that Fran has brought me a stunt driving experience for Christmas. I would never drive in a way that would be dangerous to anyone else but experiencing driving on two wheels and spinning the car round doing a proper hand-brake turn is a dream come true...I will let you know how that goes...I have to book soon as either surgery or chemo will slow me down in Jan-Feb next year.

Anyways...I slept from 10.30 til about 2pm when Fran called me for dinner...It wasn't the usual size, stacked up but a pretty picture of perfect portions...she knew I wouldn't be up to the big roasts of old so it was perfect!

Spoke with Catherine and the grandaughters and look forward to seeing them all next week. Just had a cuddle from Charlotte and she has made me a nice hot cuppa which I am drinking before trying to get some sleep after sleeping most of today :-)

My thoughts are with so many out there but special mentions have to go with Carole, Lisa and Deb...will speak with you all next Christmas!

Much Love

Tony xxxx

Cold Turkey at Christmas! (2)

Not so simple as I thought - Trying to stop 160mg+ of Morphine per day is not an easy task....yesterday I was climbing the walls, sweating and very, very tired. I even had to leave Fran in Church in the middle of the first prayer of which I offer sincere apologies to our local minister David.

In the afternoon I was due to meet our great friends for a Carol concert in one of our local pubs....I was so looking forward to it but spent the time in bed trying to sleep off this horrible feeling. More apologies for not turning up.

I have tried taking 60mg a day but still feel pretty rough. I missed a call from Dr P this morning so will give him a call tomorrow. I am sure he will give me his usual brand of sensible advice to get me sorted.

God Bless all,

Tony xxxx

Cold Turkey at Christmas!

I am going through something I never thought I would....

Three weeks ago I stopped my Amitriptyline (75mg per day) and went on to a less sleep inducing Nortriptyline (25mg per day). I was told that I was able to increase the dosage by 25mg upto the 75mg if the pain got too much.  The expected burst of pain didn't materialise so my logic thought maybe I didn't need the 25mg of Nortriptyline either so I dropped that from my daily regime.

I then got to thinking that if I could do without the Nortriptyline what about the Zomorph and Oramorph?

As the Oramorph was only for breakthrough pain and as a boost if I was driving (even down to the shops) this was ceased last week.

As for the Zomorph (Morphine) I was taking 80mg twice a day so last week I reduced it to 60mg twice a day. Amazingly the pain didn't occur so I left it until yesterday morning and stopped taking the Morphine completely.

It was whilst sitting in the bath last week that I spoke with Fran and an original theory by the palliative care doctor started to make sense. What if the pain wasn't solely down to the ulcer and general swolleness of the scar tissue in my colon. It seemed likely that it was wholly down to the chemo and biological warfare. Mr S the surgeon noted that whatever the swelling was in my colon was, it had reduced!

So tonight after not much sleep last night I believe I am going through withdrawal symptoms...not quite the cold turkey of a hardened morphine addict however the constantly runny nose, the agitated arms and legs and the inability to concentrate seems likely to be due to the lack of morphine!

There is no pain in my bottom which has blighted my life for the best part of the last year and at times has terrified the family due to my screaming and crying in seriously unbearable pain...and in a day or two the mild withdrawal symptoms would have subsided!

Much Love

Tony xxxx

Todays appointment with Mr S

The day started well with a calming prayer in the examination room whilst I waited for Mr S.

However when I heard Mr S asking his nurse to get the KY Jelly I knew it wasn't going to be a fun appointment!

Anyway - not so bad as after the internal examination Mr S concluded that the lump had reduced in size. I also discussed my requirement to chuck pain killers down my throat had reduced quite a bit since I started my chemo rest which concludes that the chemo was a central cause of the pain on my ulcer.

I no longer take the Amitriptyline and have reduce my morphine tablets by 25% and will be looking to take back some more control over the next few days. As you can imagine you cant stop reasonably high morphine doses in a single day otherwise withdrawal symptoms would occur.

Even if the pain is being eliminated and hopefully attributed to the chemo and bio treatment the ulcer and fistula are still there to be dealt with, however I am hoping the treatment may not be so drastic.

As there could be a suspected reoccurence of the original bowel cancer I am to have a detailed MRI and a CT scan.

So, sort of good news, personally I don't like not being off chemo so long but quality of life is far better for the moment so maybe a consideration for the future....we'll see!

Much Love to all, but a special mention to TonyB who lost his battle a short while ago.

An additional special mention to Carole (Dizzie), Lisa (Loopy), Deb (Kentmum) and Tanya who are all experiencing their own struggles and remain with humour!

Tony xxx

Next appointment...

Not long ago received an appointment letter from Mr S's clinic. I am to see him next Thursday 15th December for an initial meeting where we will review details.

I am sure the surgery to remove the ulcer and part of my large intestine alongside fitting me for a stoma wont be before Christmas as assume it is too late to slot me in. Although if it is, Fran and I have discussed and I will accept the date and get it over with!

Kind Regards to all, will keep you up to speed after Thurs.

Tony xx

Update - 05th December 2011

Hello All,

I had a review with my Oncologist today after my CT scan a couple of weeks ago. I have also had a break from chemo after 16 Irinotecan and 13 Avastin, it was having a real effect on me and hurt me so much in my leg bones and muscles that I was having trouble walking. I am pleased to say after a 6 week break I am feeling so much better.

The results of my CT scan showed that all the cancer impacted areas were stable - therefore the lymph glands in chest and pelvis and the tumour in my liver are all doing okay...Not being shrunk or disappearing however they are not growing either and that is not bad for a year (since last Oct 2010). They have noted several spots in my chest of about 1mm each however they are not sure these are significant so will just continue to keep an eye out.

The intense pain that I have been feeling in my backside is well under control with morphine etc - the pain is caused by an ulcer situated on the join where the original tumour site was. The whole area is not looking good and could potentially hide cancer cell activity. My surgical care team decided that the best course of action would be to operate and remove a reasonable section of my colon, thus clearing the ulcer and all other rubbish. This would also remove the need for so much morphine although a downside is that I would need a permanent colostomy/stoma - I considered this option long and hard and as I am taking a break from chemo it seems the right thing to do (I cannot have surgery whilst on Avastin as this would stop the healing process and blood clotting)

It has also been discovered that I have what is known as a fistula between my colon and my bladder - pretty gross, this is where the body decides to build its own link between organs, that link is not necessarily good and is a direct result of the chemo - the surgery should help to clear this up also.

I will let you know when the surgery is, hopefully soon and I will make sure I don't spend 7 weeks in hospital this time!

Much Love to all,

Tony xxxx