Starting a long long journey

Hi All,

Just wanted to add my bit about Folforinox. My lovely husband Paul has just had cycle 6 0f 12. He has had surgery, and it is normally not given post op,. as I understand it is considered too hard to tolerate. However as he has some tumour they didn't manage to get out, and it had spread to his lymph glands, his oncologist has gone for it, and actually after every cycle he has more better days. So for those who are just starting on it, it might not be as bad as you think.

Today is his 50th birthday, which has unfortunately coincided with day 5, which tends to be his worse day, but we shall just have to celebrate at the end of the week instead. They did offer to delay the chemo until after his big day, but we just wanted to push on. Paul is determined this thing won't defeat him and that there will be lots more birthdays! I have read him some of your posts David, and your positivity sums up how he feels,

Nikki

Hi Nikki

Day 5 was Jonathan's worst day too. He tried experimenting with steroids whcih helped with the dip but then had side effects as well (hey ho).

But a HUGE Happy Birthday to Paul on the big 5 - 0! I hope that you manage to have a lovely celebration.

Cathy xx

Thanks Cathy,

We had planned to celebrate it on a beach somewhere, but your goals change, and we are just happy he is not celebrating from a hospital bed!

Nikki

HI Nicki

Happy 50th to Paul from me (it was mine in April) and coincedentaly it is also my day 5 day ! I have to say it is one of the darker ones in the cycle. I have just got off the phone to my other half Sam who has reminded me that day 5 is "Chemo Brain Mush day" tomorrow however you will face a new challenge ! physically you are not as strong as later on in te cycle but mentally I am to say the very least " distracted" Too many what if's too many vaiables but then "WALLOP" you get a post from you guys (thanks Nicki and Mike) and it brings you home with your virtual family and you realise that Sam the font of all things positive is absolutely right.

I plan to finish work a bit early get home to my family and enjoy as best as I can being with them !

Thanks as ever for the focus guys !

onwards and forwards it's nearly the 30th ! and day 6 will most certailnly be better than day 5 !

David

My goodness David,

You are at work on the dreaded day 5, you are a super trouper. What a firm brain you must have had to start with to be able to work through the mush now!

Paul has spent the day in bed, and something strange possessed me to buy him a loud bell for a jokey birthday present (that might be disappearing before the next cycle).

Tomorrow will be day 6 and a little better, and by day 7, anything is possible!

Take care,

Nikki

Wow you guys are amazing! Yep, day 5 yesterday for Mum and knackered/no taste, but overall positive. She astounds me as do you all. The brain mush is mainly a source of amusement for us right now as she's not mixed anything serious up. Telling the dog she was going to get his bone from the doctors was about as bad as it's got (although I understand body snatching is frowned upon these days if you get caught).

David - Love your good vibes. Good to hear those mets are getting punished and the main man has stopped in his tracks. I have a fun mental image of you getting mr tumor by his danglies and squeezing until the knifeman cuts em off. Bit too much visceral imagery?

Great to hear there's such a pro-active and creative team supporting you and to Nikki and everyone else I'm with you on the stats - sod em - had practice ignoring means, medians and modes when dealing with the perennial critique of working parents (depends on the child, childcare and parents!). Same principle for this in spades (depends on the cancer, treatment and MOST of of all the person and their support network).

BTW Nikki, my hubby is also Paul and was 50 in July, but the worst he has to face is some arthritis. Not so heartless as to give him 'think yourself lucky' lectures as everyone lives life according to their current benchmarks for what a real challenge looks like. All the benchmarks you amazing folk are dealing with are pretty extreme and yet you adjust. The inherent strength of folk never fails to floor me. Keep on keeping on and hugs to you David for being such a comfortingly positive gent.

Sarah

XX

Hi Sarah and thanks for the words of encouragement, I have never before been called a "comfortingly positive gent !" even the "gent" bit is a little alien.

My other half Sam is busy working on a website to publish our story so far and she has described me as as "David the unfathomably stubborn bloke" I guess that is where my positivity lies.

I want to publish what we are going through to others, I saw today that the 5 year survival rate has gone up to 5% which is great but come on 5% is no way near enough! The more awareness we can get out in the public domain the better for all of us! Sorry to ramble but it is day six of the cycle and so I am in "one man mission mode" I feel so strongly that we, patients, carers, friends and family and everybody touched by this wretched desease are recognised by the people who create CENTRAL FUNDING FOR REASEARCH AND ADVANCEMENT OF TREATMENT FOR THIS STRAIN OF CANCER!!

Ok off my soap box now and back to reality, like Mike said one day this bloody thing may make it's mark but not without a damned good fight from an awful lot of people !

Nikki I hope Paul's day 6 is also good and tell him from me he is free to jump on his soap box as well.

Good luck to all

David

That better be a big soapbox y'all!!

Nikki - you made me laugh with your idea of buying a big bell. You'll look like this by the end of day 1 >>

Love you all you positive people

xxxx

Ahh well David, can just go on your behaviour so far. Feel free to blot your copy book and share some misdeeds and I'll revise the adjectives as needed

As far as soap boxes go I've just had my own big rant on my thread about how people in the catchment for rural specialist centres are often short changed/lacking in alternatives. However, have just proved effort can pay off a bit.

You might have noticed on my thread I got very arsey about lack of district nurses who could/would handle IV lines in our area. Off the back of an email campaign by me, Mum's local MP has pushed the PCT commissioner for district nursing in our area to launch an IV care trial that should help Mum. Initially a subset of folk will have IV line insertion and line care made possible at home, then they will review extending it. Going to help more than just the PC community and shorten hospital stays.

Not going to take the foot off the gas, but thought you wouldn't mind me blowing my own trumpet.

Sarah

XXX

Hi, just been reading through he last couple of days on this thread, and just wanted to add a couple of bits!

Nikki, have you hidden the bell yet!! happy belated birthday x

It is so definitely about living with this cancer, we are so determined to enjoy every moment we have and live life to the max & chris is determined not to be miserable otherwise he may aswell go now , his words not mine!!!

And as so many of you said, we aren't going down without fighting tooth and nail!

Bee x

Hello all

Day one of furry fox cycle six today , still in the hospital as I type. The exciting news for us since my last post is that the mid term ct scan has showed a marked improvement on the liver mets by up to 15% and the main event in the pancreas is stable.

Seemingly furry fox is kicking the demons backside so I sit in the chemo suite with a big smile on my face ! A meeting with my amazing oncologist led to both of us suggesting a bash at nano knife surgery which when combined with chemo has shown some rathe positive results. As I am stage I V inoperable I was delighted when we could use the word surgery !

Without delay I went in to London to have a consultation with the very affable professor {name removed - moderator} who is the driving force behind nano knife in the UK . I was over the moon when he confirmed that I was suitable for treatment. So off we go ! My company health insurance is unlikely to cover the full costs as it is such a new procedure so I will end up topping up for each session OUCH !!!don't people realise that Yorkshire men have feelings as well?.

So this week is looking crazy in a good way! Monday is chemo day! Tuesday and Wednesday 5fu. Pump days. Disconnected at 11 am on Wednesday and straight into nano knife surgery at15:00 on the same day. Amazing !

All in all it's all happened so fast and in such a positive way, I am ever hopeful that the nano knife will make me operable one day and all will be well in the world but we really never know with this dreadful disease !!

It will hurt the savings but what the hell you can't take it with you and we see it as a bloody good chance to move forward so yes even the stubborn Yorkshire man has been convince to open his wallet (watch for the man traps and the moths)

More info as soon as I have had the surgery

Good luck to all of the forum friends.

David

Wow David! That is really fantastic news. Best of luck with the surgery, sod the money!

Keep us up to date on how its going. Way to go Prof [name removed - moderator]!

Julia x

Fantastic news!!!!

All the very best of luck. Looking forward to hearing how you get on

Cathy xx

Great news David and having lived in Yorkshire I can understand the pain you are going through! One of my neighbours in York described himself as "A Scot stripped of his sense of generosity" so like yourself in no way stripped of his sense of humour.

Obviously NICE have not approved this on the NHS but it really should be provided free of charge one it is more proven.

All the very best with this latest treatment.

Love and Peace

Mike

Hey David,

So glad to hear your news. This old furry fox is tough but good stuff isn't it? You can read on my post Paul has had good news as well. The nano knife combined with chemo seems to make perfect sense to us. Hope all goes well,

Nikki

ps. Hi Bee. Yes, Paul still has the bell, and I still haven't hit him with it, amazing!

Fantastic news David, good luck in all your various treatments this week but of course especially the Nanoknife.

Steve

X

Brilliant news!! wishing you the best results possible .

EmmaR x

Good luck and keep us posted!

Bee x

Hi David am so pleased your recent scan showed such positive results .. onwards and upwards and much love your way

Hugz

Marie

xx

Hello to all

Just a quick update regarding the Nanoknife surgery I had on the 13th of this month. The procedure was amazing, from start to finish the team at the hospital were first class including a long conversation with a very amusing anaethiatist!

I was day three into my 6th cycle of furyfox (folfirinox) which meant I was still on the pump for the 5FU. I was disconnected at 11am from that and taken down to theatre at 3pm.

No dramas and I was under the influence of the G/A very quickly apparently (probably due to the sleepless nights running up to the procedure)

I was calmly awoken from my slumber a couple of hours later and was informed that it had been a succesful procedure and all was well.I felt as high as a kite for the remainder of the day and night with nurses checking my vitals every couple of hours. I can not speak highly enough of the care and treatment afforded by these angels, they do an amazing job and with a smiley face which makes a hige difference.

The following day I had a few abdominal pains and a very early morning visit (6:30Am) from the Prof who carried out the procedure. He was happy with the result he saw on the CT scan and is now considering how to attack the liver mets. (He performed the procedure on the big kahoona in the pancreas)

He informed me that now he had penetrated the tumour and given it a good dose of 3000 volts it would absorb the chemo quite quickly, swell up and start to give me a couple of pains here and there. He prescribed some pretty hefty pain killers just in case.

I have a call booked with the great man this week to discuss follow up treatments (which may or may not include SERT/Nanoknife) Let's see the outcome of the conversation and I will post later the details of our cunning plan

I was discharged from the hospital about 11am the following day and started to feel a little "battered"

Since then I have had a good week of pain and feeling bloody awful, not helped by our daughter bringing home a nasty virus from playgroup which I caught within about ermm 30 seconds !!

I have felt generally weak and quite low in terms of energy and whilst the pain has been manageble it grinds you down over time. That said the positive attitude remains and I continue to fight the good fight !

I had a blood test this week Monday and the reason for my sluggishnes was clear, both plateletts and Neutrophils were so low theye were nearly off the scale ! I have a neulasta injection this evening so hopefully I will rally round in readiness for cycle 7 this Thursday (or Monday if the bloods are still poor)

All in all it's been a tough couple of weeks following the procedure but here I am living and breathing (and fighting) 12 days later. We will not see the true benefit of the good work of nanoknife until the next scan (about 4 weeks time) but all in all I do not regret having it done but would say "be prepared" to feel bloody awful afterwards whatever the marketing blurb says. It is all manageble but buyer beware! It gives your immune system a right Royal work out !

sorry for the ramble and if anyone has any questions (Sarah?) just let me know and I will do my best to answer from experience.

Please all, never give up fighting and pushing forward boundaries, nanoknife is a relatively procedure, I researched the hell out of it before deciding to go ahead and I am glad I did. We need to use everything in the armoury to fight this dreadful disease and if we do not try out the Neo technologies then we will never move forward. I feel I have done my bit to contribute to the statistics if nothing else!

Good look to you all

David

Hi David,

We were wondering how you had got on, sorry to hear you have been feeling rubbish! Paul's oncologist has suggested nanoknife at the end of his chemo to blast the last bit of tumour he has left, so glad to hear that you feel it was worth while. Paul having folfirinox post surgery is also not a normal path, but yep, pushing boundaries is the only way to give this blessed thing a kicking. Really hope the scan results are good, and hope Sam is coping ok too!

Take care,

Nikki

Thanks Nikki

Good luck to Paul and Nanoknife, it seems to make sense which ever way you look at it, be it mid or end of chemo treatment it will do it's job I am sure.

Sam has been amazing, she has morphed into superwoman juggling the dogs, the horses and our daughter as well as looking after a very bored person ! she is the true unsung hero in this journey ! I am back work after a 10 day break as I can no longer stomach daytime TV! Homes under the hammer !!! you should be ashamed of yourself!!

Post op hasn't ben the easiest of times but compared with what most of us have to put up with on a daily basis it is a relative walk in the park!

David

David, Homes Under the Hammer is the best, in our dreams we of off to an auction and starting our property empire when this is all sorted. Does Sam peel a nectarine for you? Paul feels this is my ultimate act of devotion!

Nikki

Hi Nikki

Hmm I think you have just shown your guilty pleasure ! homes under the hammer and 1980's episodes of Minder are enough to scare anyone back to work.

As for peeling anything (including spuds) Sam insists that whilst I can I will and I have to say this does keep me motivated, Jam on toast at anytime day or night served with a sweet cup of tea is her dedication to the cause. That and kicking me up the ar*se if I get a bit mopey!

Take care and keep on peeling lady

David

Homes under the hammer indeed!

Jonathan watches that every morning - he loves it!!

Sorry to hear you have felt so rough David after the treatment but thank you for such an informative post which others considering the treatment will find really informative in what to expect.

Well done on getting back to work so quickly as well, clearly you must be improving, even if motivated by daytime tv!!

Keep on keeping on (and keeping us updated)

Cathy xx