Lastest updates...

Dear All,

Sorry I have not updated my blog etc for a while, I was finding it quite tough to put thoughts into words and have only realised today that it was due to the positive and humorous messages that I had previously posted...my story was turning into a good luck story and then it just wasn't that positive and humorous any more!

In the past people on the cancer chat room have referred worried people to my story and it has helped people to realise there is a way to get through this, I wanted that to be longer than 9 months and continue helping people and if it came back I would just deal with it but that was in the future - now it is in the present and there was no getting away from the 'terminal' tag.

However, It has taken me about a month to realise the positive messages I have been given...

I have had several experiences over the past couple of weeks that have helped me find those positives:

1) I had a second opinion that I searched out at the London Oncology Clinic in Harley Street, all they needed was a referral letter from my oncologist with the latest scans etc, which was freely and efficient despatched - for a princely sum I wanted the consultant to tell me my current Oncology care team had missed something, after all that is why we have second opinions. Unfortunately he confirmed the treatment I was on was as it should be with the prognosis correct...however he did tell me this was not all that could be done...there were other drugs available that would not be a cure but would slow things down if not stop the progress on a temporary basis.

a)The potential to use Oxaliplatin and Raltitrexed rather than a Fluoropyrimidine (I am allergic to that) is a real possibility.

b) Funding should be applied for the next step for Cetuximab and Avastin at a cost of approx £40K per year!

c) If the above two work well at slowing things down sufficiently, localised therapy could be attempted such as selective internal radiation therapy (SIRT) where they inject radioactive beads into the liver tumour - unfortunately they still haven't got a similar treatment yet for the para aortic lymph node or the multiple hotspots in my pelvis.

2) I had another second opinion where Fran and I travelled to the University College Hospital (UCH) in London to see a top Oncology Professor - I had in my arsenal the previous second opinion but didn't plan to share it first as wanted to see what this chap had to say...

He examined me checked my body over for abnormal swellings and concluded almost word for word the second opinion 1). He did say that If I had any further questions I could call him any time and as this was on the NHS that pleased me alot!

3) I went to a healing evening at my one of the local circuit churches - it wasn't just for me as there are all forms of suffering present - I had my amazing main minister and one of the amazing local minsters pray with me and they layed their hands on me whilst they prayed...I went in with my head bowed and left with my head held high... I have the medical world looking after me and the higher spiritual world of my God and Jesus Christ our Lord with me...Whether you believe or not it is supporting me in whatever happens next!

4) I had my second review with my Oncologist on Thursday who had the letter from the private consultation and agreed with the complete package - she explained that they would have been going down this route eventually and we both agreed that if they threw everything at the cancer in one go all the ammo in their arsenal would be used up too quickly and that just wouldn't do as I plan to be around for a while yet. She is to apply for the funding now for the two newer drugs as that takes time and said they also had the potential to apply in two counties as I am under both Chesterfield and Sheffield Hospitals...She was also very interested to hear what the chap said at the UCH and should be receiving his report pretty soon to confirm what was said.

5) Fran as my EFT therapist and we have uncovered some deep routed issues that hopefully will remove any anger and negativity that may be contributors to my current situation - we combine EFT with Prayer and again I believe in this and it is giving me comfort at this part of my journey so if you don't agree with this then tough!

So a plan is available - I am going to be here for a while yet as long as I continue to respond to the drugs, so far so good the 2nd cycle of Irinotecan has only given me the worst hangover ever, has made me extremely tired, given me Dia and my hair is dropping out - as long as the three week cycle continues to plan i.e. 2 weeks of cells not dividing and 1 week repairing before the next cycle then all will be well until they scan me again in 2 months time after 4 more cycles.

So things are positive and now I know my plan and that death is not imminent (although as with everyone it is inevitable) I feel a little more settled that I can continue to project a positive message. However I have been told by more than one person that I have to slow down significantly and save most of my time for me...

Much Love to all - I learnt at the service that you don't have to be sad as this is part of my journey so I am going to try my best to cheer up a bit and get on with the next chapter.

Tony

p.s. I also passed my Mod 1 last Tuesday and have my Mod 2 to get sorted then I can ride my big bike!

RIP Ray

RIP Ray and thoughts with Audrey - I didn't know him that well but he touched my heart. He was a man of 79years that looked like a man 10+ years younger that played the best old man (Zacharia) in the church play so well, I will remember him for the smile he managed last Saturday in the hospice before finally passing away on Sunday.

My story comes second today...

Evil Irene and Dom Perignon!

Hi Gang,

Back from WPH and now off to bed to crash..

The Day Case unit where the chemo is administered is on the 1st floor and so is the chapel so as we were a bit early we popped in to have a chat with the Big Man upstairs...I think I might 'get there early' and make this part of my regime as it settled me.

First set of Evil Irene - Irinotecan, under me belt. What an experience...The staff are fantastic and I was well looked after.

Due to my poor battered veins they wrapped my arms in a heated blanket to warm my veins up...the cannula went in first time.

First there was the water flush, then an injection into the bag of Domperidone (anti-sickness) closely followed by a steroid injection. The Irinotecan was then hooked up and I had an Atropine (to reduce some of the immediate side effects) injection in my arm...I was warned that it would hurt a bit and after telling the nurse that I was used to injections and would be okay she said again that it would hurt...she was right!

I hadn't eaten all day as was a bit nervous and was warned that I would get bad stomach, gripe type pains due to the chemo...also if my vision was blurry I was to call and they would give me another Atropine injection...I did have to have another injection and immediately felt better...also the nurse brought me a cheese sandwich and a bit of cake.

There was an amazing and surprising feeling of happiness in the room, there are three suites but they are all in the same large room.. I had to tell two ladies behind me to behave as they were having way too much fun, laughing and sniggering...great to see and not at all what I expected...as WPH is a cancer hospital the whole ethos is around cancer but instead of bringing the mood down it lifts it up...

H, the Macmillan nurse came and had a chat when Fran went off to make my appointments and made me cry with her care and kind words...she was genuinely sorry for doing so but I needed that chat - she went to the ward to get my supplies and I left at 5.30pm for Fran to drive me home...we thought it best she drove as I was eating, drinking, moving and talking in slow motion so probably for the best.

And just so's you know that it is not all doom and gloom I got Fran to take a snap - Fun and Happy Tony with a little electric blanket to keep me comfy!

Anyways I am off to bed...night, night x

Tony

Once more unto the breach, dear friends, once more.. Day 329

Hello,

Things are cool - all sorted for later today...been to see minister Lyn for a prayer and blessing this evening with Fran - we discussed a lot of things and I have confidence that neither God or Minister Lyn will be leaving me any time soon! Spoke with Dr Kate this evening and all is okay in my world at the moment...

Went to Third-Space Wednesday night which was an amazing and moving experience, the whole group prayed for me and I was annointed on my hands and forehead with oil after which they all laid their hands on me...there were tears - we always joke that I like being the centre of attention (me, me, me) however just at that moment I wished I wasn't the centre of attention. Harry (or Harold as I call him) was the sweetest young lad and brought me a big box of tissues. Christ / Religion may not be everyones cup of tea but I love a great big mug of it!

Got my referral sorted for a second opinion and building my plan for the next few months - I am a project manager after all...once I have it sorted I will log the details on here but if any of you can suggest anything then shout out loud...it will not be set in stone as the goalposts with cancer will be forever changing...

Just the little things mean so much, but not so little...like growing wheatgrass for me, ringing to wish me luck, a text saying 'love you dad', someone's rainy day fund that I was told doesn't have to be for their rainy day, mum and dad still looking out for me, RRD (If you get a chance to work here - don't turn it down!), the cancer chat army that are more than cyber friends, texts from my brothers and sisters, the old Feltham crew still standing strong, prayers with friends, prayers with strangers, emails from all quarters...

Random photos - I have not had a bad life SO FAR and on Wednesday night at Third-space I mentioned a team game we played in Bangalore when I was working back in 2006... Just a great time and some great friends:

The Human Puzzle!

Nearly there...obviously needed me to take charge!

Just the one...

Just the one...honest!

Through these fields of destruction
Baptisms of fire
I've witnessed your suffering
As the battles raged higher
And though they hurt me so bad
In the fear and alarm
You did not desert me
My brothers in arms

Once more unto the breach, dear friends, once more...

Much Love

T

Life is so unfair...

All,

Latest update...from my last Thursday meeting in Sheffield

My PET scan showed two further areas that are inoperable...

Liver secondary, inoperable lymph node near main artery in my chest, morbid lymph node in my pelvis which means the benefits to carry out surgery is outweighed by the potential outcome of the surgery. 

The terms inoperable, prolonging life and palliative care were duly noted...therefore I am to start a course of Irinotecan chemotherapy on Friday 05Nov at Weston Park - Sheffield, every three weeks, not sure for how long and maybe it was mentioned but my head stopped hearing things after the first few sentences.


I spoke with me mum whilst walking round B&Q after the prognosis, as a 46 year old boy, your mum still is your mum, if you know what I mean....We went for dinner at Mahmoods in Sheffield and to top off the day got a parking ticket as I didn't read the sign properly, dropped Nick off at the station and then we went round to share the news and had a group hug with Wend and Steve and then went home and drank lots of JD and coke, Just because I could!


Texts from my sisters...what must they be thinking?


Colm came round on Saturday (he lives in Petts Wood, Kent, jumped on a train to Matlock, stayed for just over an hour then went back, just to see us and give us a hug). Had a cuppa with Chris and Colin and some good solid prayer!


The Sunday Third-Space service in Hall Leys Park was strange to start with as I couldn't look at anyone in the eyes...strange because I usually like to hug everyone and just found myself looking at the ground - Colin and Michelle were leading the service and I heard them mention my name. They had one of those lanterns that you light and launch into the sky...we all held it and let it go into the clouds...moving and tearful but somehow I snapped out of staring at the floor (maybe it was because it was about me, me, me and me!)


Spoke with Richard my boss yesterday, Helen and JV - don't want to tell anyone else face 2 face!


Going to visit Minister Lyn on Thursday - If anyone has ever seen the Rocky films he always goes to see his minister the night before a fight for a blessing so why should I be any different.


Soup made in the freezer, ice cubes of juice to be made in the next couple of days and then I will be prepared...


"Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you." - Deuteronomy 31:6


Much Love

Tony xx