HAPPY NEW YEAR....

Happy New Year to all my lovely readers....been a tough year but I have learnt so much about me and the people around me...would I change anything? Absolutely would change the prognosis but the experiences and the people I have met along the way absolutely not.

So as I toast the New Year round at the Lingards with many of my friends I will say a toast to absent family and friends, to the many that are struggling with illness and to those that didn't make it....you are all my heroes...thanks!

God bless all.

Tony and Frances xx

On yer bike!

I have just been out for a spin and after a bit of a hiccup with the clutch not working (had to top up the fluid) - it went like a dream....

It was wet dark and foggy but I didn't want to get off and the seat is so comfortable on a bigger bike I could have stayed out a lot later had I not been aware that Fran would be worried!

I went to Matlock Bath and chatted with a bloke at 'the kiosk' who checked the brake fluid reservoir and told me my clutch problems were due to a lack of clutch fluid...off I rode to a little shop in Chesterfield, purchased some fluid and a little screwdriver set and fixed my bike!

Nice to do other stuff!

T xx

A great Christmas...

Christmas Eve got off to a bumpy start but once we all settled down everything just happened...

Charlotte and I prepared the vegetables and some stuffing for Christmas lunch, Fran went out and delivered cards and then I went and shopped for a couple of last minute presents. I stopped off at the Kenyons for a cuppa and met Henry (Mr Kenyon Snr) - what a warm household and not just because of the fire!

I called Fran at 5pm on the way home and asked if she fancied a drink...not something we had done for months and one of our last encounters at the Duke of Wellington ended with a leaky stoma down my leg so demons needed exorcising!  I picked up Fran and off we went...a nice pint of Stella, we also met Amanda and Sam our next door neighbours which was great too. We moved into our house in Aug 09 and had not even had the chance to say hello properly because of one thing or another...so a good opportunity.

Only the one pint on Christmas Eve but it was great to be out just for a while with my beautiful wife...

We put out the carrot, mince pie and glass of sherry and read 'Twas the night before Christmas' with all three of us reading a page at a time...

Spoke with Colm on a video call who is in Ireland on Skype...modern technology!

Bed at half past midnight and then the dreaded chemo side effects kicked in from 03:30 onwards....

Christmas Day - the birth of our lord, Hallelujah!

After breakfast of crumpets and tea we opened stockings and got ready to go to worship.

I stupidly rode my bike to the bandstand in the park for out Sunday service, it was so icy I was very lucky not to crash...It was a great albeit cold service and lovely to see our friends on Christmas morning to celebrate!

The Songhurst's opened a bottle of bucks fizz, and I jokingly pointed the cork at Fran then moved it out of her line of fire...the cork popped and instead of going straight up it did a perfect arch and bonked straight on Fran's head...now that was funny and we all laughed so hard!

Great lunch and watched 'Singing in the rain'. I have never seen it and thoroughly enjoyed it.

I received some great presents from Santa, most notably was a pink Ralph Lauren shirt, one I had liked and admired in a shop in Bakewell, very nice and very expensive...thanks Fran xx (also sorry I broke my mini remote controlled helicopter within 30 minutes crashing it into the ground - there must have been a design fault!)

Had an absolute great day and slept for 9 hrs straight, probably due to being up since 3am although the brandys probably helped....

Much Love to all.

Tony xx

Day 376 - Tuesday 21.12.10

Dear All,

Many thanks for the support over the past few weeks - I have been feeling a bit sorry for myself which is just not on!

It has felt like I have been at the wrong end of a very long dark tunnel and now I feel I am nearly out the other side.

I am still a bit fed-up with the quarantine situation as I am purposely staying away from gatherings as dont want to get a germ or infection...I have had so much grief in the past year with one thing or another so taking no chances.

I have managed to go out on my bike once last Wednesday - the acceleration is incredible, apparently the bike does 135+ mph and accelerates at 0-60 in under 3 secs...not ready for that yet!

So all good and glad to hear many of my friends doing so well and those that are struggling, please believe me when I say there are silver linings in everything.

If you haven't yet seen my quotes, please have a look at the links below...not a boast to say look at me just a sense of pride that I can make a difference even with the worst prognosis.

http://www.pals.nhs.uk/cmsContentView.aspx?ItemId=2140

http://scienceblog.cancerresearchuk.org/2010/11/30/our-online-forum-cancer-chat-has-relaunched/#more-3749

Also I asked my Onco a couple of questions and the answer was YES to both...

1. Do I need a flu Jab - YES

2. Can I have a couple of glasses of Red Wine over Christmas - YES

So you had all better watch out as I haven't had a drink in months...seriously though I wont probably have more than a glass but it is just nice to know I can!

One final positive note...with all that has gone on in just the past couple of months I am feeling better and stronger than I did this time last year...whilst I still have cancer in my body it is not the great big life sucking lump I had in my bowel that stopped me walking, sleeping and sitting down...every cloud ay!

Gods Blessings to you all.

T xxx

Is Chemo meant to be fun...surely not...

How can having chemo be fun, surely I must be going mad or maybe kindred spirits pull together...

I had a lady to my left having chemo for bowel cancer...she was lovely and her husband had us in stitches with his stories about dishpan hands and having to get the ironing done before 6pm as he wanted to watch tele. There was a lady next to her who was lovely and a lady next to her and actually opposite me who was there all day and looked stunning with a big smile and a head scarf.

We laughed and joked about me being a londoner and changing into a northerner...I now have my dinner at lunch time and tea at dinner time and leave out the word 'The' when saying sentances as in 'I am off down shops'

The chap with his wife next to me told me to check my pockets as I left as all the dodgy northerners would have had their hands in me pockets - that got the biggest laugh...

I had my 3rd of 6 of Irinotecan and have been told I will have Avastin in 3 weeks time on 7th Jan (there I go again leaving out 'The').

Feel like crap now but things ain't so bad... I used to feel bad like this regularly with a bloody hangover and that was self inflicted...

Much Love and Gods blessings

Tony xxx

Just Say Yes...

Hello Blog and all you readers...


I had my review with my lovely Oncologist and Macmillan nurse today - whilst not exactly wanting to be there we have already built up a healthy rapport and discuss the enormously heavy subject with sometimes a smile.


My side affects of Irinotecan have been numerous but not too bad and nothing I can't handle. 


I had some good, no actually great news...3 weeks ago I was told that my treatment plan would involve some pretty expensive drugs that would need an application for funding in order for me to have them. I had horrible thoughts of not getting the funding and having to do sponsored walks and maybe start to train for the London Marathon. Anyway - the application has been accepted and funding granted for Avastin, a fairly new wonder-drug that works to prevent and reduce tumour growth. It stops new blood vessels forming so starving the tumour of blood and preventing growth. It is know as a Biological Therapy and should work well alongside the chemotherapy drug Irinotecan (which works to stop cells dividing) - again not a cure but a method to slow things down and try and stop the cancer getting any worse.


The plan is for me to complete this course of Irinotecan (I have 4 more treatments lasting approx 9 weeks). The team will assess if my body needs a rest and either way will start a combined course of Irinotecan and Avastin. My theory is that with Prayer, EFT and my supplements I will ensure my body does not need a rest as whilst my body is resting and off-guard the little cancer cells are doing their work, so no rest for me!


I have reviewed the side affects and mixed with Irinotecan my cells are going to get rather confused so not looking forward to it.


For those that are going through similar or want to have a nose I have the links below:


Irinotecan
www.cancerhelp.org.uk/about-cancer/treatment/cancer-drugs/irinotecan


Avastin
www.cancerhelp.org.uk/about-cancer/treatment/cancer-drugs/avastin


Finally on a lighter note...I am famous...Please have a look on the link which takes you to an article about the relaunch of the Cancer Chat website...and little me is noted in it...


http://scienceblog.cancerresearchuk.org/2010/11/30/our-online-forum-cancer-chat-has-relaunched/#more-3749


Much Love to all,


Tony xxx

Clear the roads!

At last I have finally managed to pass my test...bike is to be delivered on Wednesday and its new home is prepared and ready for the new arrival.

Prayers really do work as I selfishly prayed for myself - I know enough about the way prayers work to know not to pray that I passed my test or that I win the lottery, that is not how prayers work. I prayed that I would be safe on the road and would be calm...and I was!

p.s. Doing okay and feeling not too bad at the moment - the tiredness, mouth ulcers and dia is the worst but it is becoming the new 'normal' - Not normal for some but normal for me so I am learning to live with it.

Evil Irene (Irinotecan) No.3 on Friday and looking forward to celebrating Christmas for all the right reasons!

Much Love

T xxx

What else is there?

Just so you know that my life doesn't revolve around cancer...it also revolves around snow...

Fran was supposed to be in Bakewell for Mon-Tue of this week and is still there, probably for the next day or so.

Poor Charlotte has been put to work as she is off school and I reckon sometimes she wished she was in class, especially when I sent her t' shops to get catfood, eggs and sausages (I don't eat sausages honest, they are not on my approved list - but they did taste good!)

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

Lets look on the positive side...

Results through...


Secondary liver tumour, two lymph node hotspots - one in my pelvic region and the other near to my main artery under my chest. 


Plan is for chemo, review meeting with my oncologist on Thursday after which surgery will be a potential option on the liver tumour...one step at a time.


I added in a previous log I was looking at two options...


Option 1) Single Liver Tumour no further spread 
or 
Option 2) Multiple spread, palliative care 


Actually it is somewhere in the middle.


Deliver me, out of my sadness
Deliver me, from all of the madness
Deliver me, courage to guide me
Deliver me, strength from inside me

All of my life I was in hiding
Wishing there was someone just like you
Now that you're here, now that I've found you
I know that you're the one to pull me through


Catch-up soon.


T x

Green Juice - How can it not do me good!?

Fun in the Songhurst household on a Sunday afternoon...

I am done with the self pitying moods for the moment....I thought I would share what I do to make me better...you can't just rely on the NHS or God (well actually you can). You have to take some responsibility for your own wellbeing - why does it take a life threatening illness to make us all feel this way?

Frozen Wheatgrass Supplies!

After months of buying frozen wheatgrass due to the fact I just could not seem to grow the stuff...

Lawn on the window sill

Fran took charge...and here are the results.

Me mowing the lawn...

I will still need to buy frozen wheatgrass as I cannot grow enough to sustain the volume I am taking.

For the moment I am flooding my body with the green stuff as my non-chemical chemotherapy!

Pure goodness

I have 6 fl oz a day, which equates to 6 little pots of frozen wheatgrass. The 3 trays make 2.5 fl ozs and is strong stuff!

The fresh stuff is so potent I am on half rations whilst my body gets used to it.

Just look at that green stuff - just the colour makes me feel better :-)

Mix it up!

I mix the *wheatgrass with half a bag of fresh spinach, 2 apples, a chunk of fresh ginger, a good slice of fresh lemon with 6 teaspoons of barleygrass powder, 6 teaspoons of lecithin and 3 tablespoons of E3 Live (super algae)** and a pint of water...

Nearly there

I split it into 3 juices for the day!

The containers go to work with me or sit in the fridge until I am ready...

All set for the fridge!

Why do I drink it? Because it makes me feel better than I have in years  and it has my 5 a day many times over in the fresh uncooked raw state...


Vegetables au naturale without being boiled, stir fried and no sauces... Tough going to start with for a couple of days but now it is part of my daily routine and Fran even has one a day...



p.s. If you want to actively do something to help me alongside the continual prayer and positive energy I am surrounded by, grow me 3 trays on your window sill...

I have the seeds you will need 6 seed trays and some organic compost
I germinate them and deliver them to you for planting
You put the 3 empty seed trays on top to keep them dark in a dark room for a couple of days
When the top trays are raised you take them off and pop them on newspaper on a sunny window sill
Water daily until they are 6-10 inches high where they will be harvested and juiced
The trays will be watered again until the same tray produces a second crop after which the whole process starts again

It is an amazing process and they actually look quite good on the window sill :-)

Much Love to all

Tony xxx




*Wheatgrass provides chlorophyll, amino acids, minerals, vitamins, and enzymes. Claims about the health benefits of wheatgrass range from providing supplemental nutrition to having unique curative properties.

**E3Live is an Aphanizomenon Flos Aquae, a freshwater edible species of blue green cyanophytas. Containing countless naturally occurring vitamins, minerals and nutrients, E3Live's unique liquid form also functions as an incredible energy enhancer.

• Increase energy, stamina and feelings of wellbeing.
• Maintain optimal brain function, mental clarity and creativity.
• Increase mental focus and concentration
• Cleanse and nourish the blood through the power of chlorophyll.
• Help normalise weight
• Support and balance immune system
• Help maintain intestinal regularity
• Reduce recovery time after athletic performance
• Promote the growth of stronger nails, smoother skin and silkier hair