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Thank you and our story... but we are not that far yet!


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The very best of luck.


DG, I am having to move home immediately due to breakdown of relationship with landlord, having had 3 leaks last week, 2 of which remain unfixed. I am currently packing the entire contents of the house single handedly whilst organising removals utilities etc etc etc. We are hoping to be out by Thursday/Friday. I was lucky to find a lovely brand new flat that my son and I are able to move into immediately. Hubby has taken care of us. I may be back on these boards in a few weeks if I'm lucky.


Please can you text or message me when there is news please on your Dad.


I will try to log on when I can to catch up on news but if I don't post, please forgive me everyone. Moving home is not what I needed right now but what doesn't beat you makes your stronger.


Much love to everyone, both sides of the divide. Stay strong everyone xx

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Thank you both and PW, I know where you are and I will let you know. I suspect after my round robin text that here will be the very next place I inform.


Moving is very stressful isn't it... let alone with the notice you have. However, I hope you will be happier, I have seen your stress on FB and I think a nice flat and a fresh start is just what the dr ordered. Hubby will be wherever you go, in your hearts and minds.


I have just been reading Ruth's thread and could not help but notice the comment about the promising stage 1 / 2 trial that was mentioned. All I am doing now is repeating in my head... please let that be dad's trial. As you know, dad is on a stage 1b trial after a referral from an oncologist on Harley Street that I think may be the same professor. The Prof dad went to is one of the forward thinking pioneers in this illness... but then again, there are many doctors on Harley Street.


On top of everything I have a job interview first thing Thursday morning with a 20 minute presentation on how to make audit less boring (I am paraphrasing of course!). So, that is going to be a barrel of laughs if we have bad results... a presentation on auditing by a swollen eyed downtrodden wreck. Dad's fatherly response was the same as the advice to himself... daughter... you just have to learn to b**l*cks on with it regardless!


My dad trotted in here tonight after getting off of the train from his scan this afternoon and he looked the absolute picture of health. All smiling and joking. He just seems to be getting stronger and healthier everyday and I hope it isn't fate about to kick me in the teeth. He was really genuinely happy - pre diagnosis happy. I am trying to shore myself up with thoughts that if things were about to turn sour that the trial would have some blood work indications and would be preparing him.


As for his birthday... we are going for dinner at the dogs with his siblings. Again, very strange because even 2 months ago he said he wouldn't be up for it in the evening as it was too cold and that was summer.


Someone is playing a very very cruel trick if tomorrows results are anything but positive.


In the meantime, regardless of what happens, I will take my dads advice and try and make him proud Thursday.


xxx

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Well that was an interesting 10 minutes. I was sitting here writing out my cards for the presentation tomorrow knowing that mum and dad had just got off the train and had began their walk to Harley Street . I thought I was in for a few hours of painful waiting and then an e-mail pops up on my work account and the title was:


'YOUR DAD DID WELL AGAIN, VERY VERY GOOD, WILL GIVE HIM A COPY TODAY'


And I open up the e-mail and I have been sent the report from the trial consultant.


So I phone my dad and now they are smiling all the way to the institute and the sun is shining as well.


Dad seem very relieved.. I think he had convinced himself it was going to be bad.


Now on to the birthday celebrations!

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That sounds brilliant news DG. I'm so pleased. Which trial is your dad on? Did you get the results from his tumour profiling too?

It's always good to hear positive news.

Ruth x

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I thought I would share this mornings text message from dad..


"Just walked to get the papers it was no effort at all, Can't believe how well I feel so soon after treatment. Got a good 6 hours undisturbed sleep last night almost unheard of for me."


For anyone reading this story and fighting chemo side effects... keep going, that is neuropathy put back firmly back in it's box. After fighting so many many fronts on this my dad is nearly side effect free.


xxx

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Hey Ruth,


I did not mean to ignore your questions.. I skimmed over them in the moment and now realise I have not responded. Dad is on the Yosemite trial at the Sarah Cannon institute. What is interesting is that they will offer him another trial after this one but all they do there is immunology now it seems and so it will be a very difficult decision to make - do we step away from the conventional therapy? My instinct is no but the instinct needs to be verified with some proper research. It would certainly exclude dad from Nanoknife if he goes on another trial and being in communication with the people in my network (and their outcomes), both on professional and personal level, I am certain Nanoknife is the way forwards. But actually, not mainly the nanoknife, it is getting the liver ablation that is essential. Those 'negligible' (trial speak) little shadings of mere millimetres is dads biggest risk factor right now and we must not allow the liver to be compromised and this is why ablation will occur before nano. I am in a rambling mood.. bear with me... I am in one of those moods again. Much of my evidence may be anecdotal but it is extensively anecdotal and I stand absolutely by what I say. I know that the PC Nurses and other professionals have a fine line to tread in what they say but I do not have that blockage for our fight and it needs people fighting this illness on many different fronts to make things happen. And whilst our PC nurses are the gentle politicians of this fight I am waving my bra around my head and demanding that my vote in the PC fight is absolutely counted. People may not always agree with my methods but far beyond what I write on this forum... my challenge is duly noted where it matters and most certainly in my dad's individual fight.


It is interesting how people respond to different tactics. We have a meeting with my dads NHS oncologist next week and I have sent a letter to him detailing the outcomes I expect from the meeting so that he has time to prepare. The main one being gemcap v folfirinox (because we are paying privately to bridge the NHS delays when dad comes of the trial) and the fact my dad wants some form of port as it is causing him issues at chemo time. The last time we requested something from this oncologist (a biopsy) he said no as he has to justify on the forms what is the benefit to the NHS. This really upset my dad but I know the process and I know he has a point within the confines of the system he has to work within. However, if the port is refused expect me to by a little feisty over this next week. Private treatment and NHS treatment are not, by law, mutually exclusive and I am starting to get a little irritated over the presumption it is. Our NHS consultant is a little too apathetic when it comes to out treatment choices and still wanting to engage with NHS.


So, I have written to him with a sort of agenda and this really works. Not only do I ask him to be considering our needs during the meeting I expressly request that the numbered items are addressed in his letter to my GP. This may seem mental to many people reading this but it is not.. it is professional and it should not be a chore. I cannot state to you all who choose our path to advocate and get EVERYTHING written down. Once you set these meeting on a purely clinical and professional level you can drive outcomes that would not have been available. Personal accountability of the medical professional is essential.


I am seeing many positive outcomes for PC beyond the statistics but we need to stay grounded in that. I am not seeing it for people 75+ and probably a little be earlier than that but do not want to specify a precise age. It is an individual disease with individual outcomes. Over the last few months I have gone from my dad being diagnosed to now knowing another 2 people in our personal lives with PC. What the hell.


As for profiling... there was not enough from Oxford biopsy (was a scrape not proper biopsy). We are in the process of booking in for this. If you have the finances then I suggest profiling is the way forwards, it is likely you will get sod all out of it but you may be lucky. I put the lottery on every Tues and Fri with a very remote chance of success. Your chances with PC can be up to 20% you will have a positive outcome... depending on your medical team and appetite. (PC nurses, please correct this if you can and if it is wrong).


What is interesting (to me in terms of dads case) is that I have called the HCA to get a quote for chemo to bridge the gap when dad is no longer eligible for the trial and the 6 weeks (Yes 6 weeks!) the NHS say it will take to get chemo (note that W&M, the NHS are crap on this and I truly believe they manipulate their statistics - demand failure). Anyway, we have been referred back to professor {xxx - edited -moderator} for this and that will be nice to get some advice from him before the NHS so we have hopefully a less defeatist professional view to take to the NHS.


Statistics. I cannot stand them. I had never heard of ambulatory care.. what the hell is that. Well here is my theory... rather than A and E with dad with the eye issue we was sent to this department. I am quite certain many had been sent from A and E. As part of the 'NHS experience' they even bought sandwiches for the whole waiting room because that is how long everyone had to wait. I wonder where we used to go before the 4 hour waiting times were brought in - a&e of course.


Stats are one source on info... but it is so hugely variable around PC, depending on where you start with it (and I emphasize that because there is a variation of PC where your path is predetermined to an outcome that cannot be influenced, whatever you do). I do not want to suggest that anyone's fight on this is diminished remotely because different people choose different paths. The crucial thing that matters it that it is the path that YOU and YOUR FAMILY decide is best (taking into account the medical advice and your own research). It is not the decision of someone who has met you for 10 minutes. x

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On a lighter note... I think I may have a good thing going to do this quiz night. random 10 questions would be appreciated to https://www.facebook.com/groups/495134694006085/permalink/551784058341148/?comment_id=552035548315999&notif_t=group_comment_follow&notif_id=1477216249679198


I have bitten off more than I can chew... I need some innovation!


If any one of you can send one round to me and I will deliver the event and post on here where you can come to do it if it takes your fancy. x

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Oh fab... I went out for dinner, had a couple of vino's and set the whole thing in motion in my parents village... venue booked etc but I am so so busy and after I had tea at home and came to my senses last night I thought... oh dear, what have I done! All in a good cause though so onwards and upwards! x

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Hey Mo, thanks for asking... I certainly have some catching up to do on here but I made a very firm(ish) decision not to engage in anything PC this week because this has been my lovely dad's celebration of his 64th birthday. Our next goal is obviously his 65th birthday but not only because he wants to live but because he feels slightly embittered he may never get his pension that he paid into his whole life. So, a silly goal but as good as any and also, once he has the cash I can then transfer it into new treatment options that should he become deceased it would be dead (excuse the pun) money anyway.


It has been an interesting couple of weeks. I alluded to the fact previously I now know 2 other people personally with PC and it is just so strange because I had never even heard of PC before dad was diagnosed. One person who was diagnosed is the father of a childhood friend from our village. What I find really strange is that I realise what a cancer virgin I was and how it has come across in this thread at times. They are going to see Professor XXX next week because my main thought in all of this still prevails... informed choices the whole way. There is no right and wrong choice in all of this.. there are just the choices of the patient and the only choice around that is the best informed one.


So, anyway, back to me and the other stuff. I am not very happy with the NHS (sorry to spoil the good vibes I was sending out there but I do not think this perspective will surprise any of you). I am so so grateful dad is in a trial and we have maintained the NHS appointments. I have time at the moment to smooth out the issues with them that would have been fraught and absolutely distressing if we had started with them. I know there are some great professionals within the NHS but I fear we are not among them. We did not see the usual oncologist this week. For all these meetings, a week beforehand, I send a special delivery letter to the oncologist detailing (in a very professional way) why we are attending the meeting and there were two points to this meeting (We would cancel otherwise and give up the appt to someone else and reschedule). So... Point 1, dad wants a port or PICC line as chemo is getting difficult. Point 2, dad will go for nano once off the trial and we need to again discuss next NHS treatment because there will be a 4-6 week lead in to get chemo from them and we will bridge this privately as nano should be done at same time.


Point 1 - they could put in PICC line but risks outweigh benefits. However that is dads (informed) choice. So, no PICC for now as dad has deemed the risk outweighs the benefit for him.


Point 2 - Treatments are changing and we need to be aligned with what the NHS will offer after we bridge the 4-6 week gap. I am not naive as to the limited resources of the NHS and the choices we have but Mr Oncologist has never heard of Irinotecan hydrochloride nanoliposomal injection which I believe will be licensed in UK in January for PC (6 month median survival as second line treatment). He was also not aware of GemCap for treatment for PC and then proceeded to tell us that dad is already on the main treatment the NHS would give him. So, I said abraxane is not available on the NHS for PC treatment in England. Response: yes it is Response: no it isn't. No harshness.. I treat these meetings on an extreme business meeting footing.


So, Mr new oncologist goes out of the meeting and comes back and says I think we need a case conference and so now we are waiting on a call to set up the meeting between usual (head) oncologist, the cancer dept manager (assume funding) and me and dad to see what they can do for us.


I cannot emphasise to people enough who are taking the path to fight this with everything they have the value of writing letters and making agendas for these meetings. I wish I could post the letter here. I am not rude and I am not emotional. I just write in advance and say thank you for the fact we are meeting and to save them time and make things more efficient I would like to tell them in advance what outcomes we are looking for. It may seem it did not work for this meeting (he had not read the letter but is was on the file), but it did. If I had not written that letter (copied to the GP) then we would have had a fudge of a meeting with limited outcomes. Now we have a fudge of a meeting but they still have to deliver the outcome or they look stupid and I have a record of ineptitude. I wanted to start this thread to show how to politely hold people to account for their decisions around our love ones. My dad has choices and he has rights and there is absolutely nothing wrong with shoring up these rights in this process.


I am quite sure the oncologist is probably a good oncologist.. I think the main man was busy and we got buffered to an oncologist that is not an expert in PC (I believe Axbraxane is available for other cancers). I can sort of understand that dad is not quite his patient and he wants to see people he is treating as quickly as possible (and the MK hospital does not meet their cancer targets - not looked at the figures but experience suggests otherwise regardless). Dad is being well cared for, of course they prioritise.


The point is though... my dad is important to me and putting this on a business footing has ensured we will get an outcome. There is no wriggle room on this. I may not get the outcome I want but I will get in writing why not so that they really have to think about it.


My dad had a wonderful birthday. We went to the dog races and had a posh meal at the top with its own balcony. I really enjoyed it but ever now and then I looked at him and thought.. will this be our last year celebrating your birthday. Well if we make January then there is a 25% chance that I will see his 68th. x

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Dearest DG,


I'm glad you've had a little rest from cancer talk, it can become overwhelming for those around us and make us lose our sense of perspective. I feel I am boring those around me stiff with cancer and death and have to make a conscious effort to talk about something else. I may make a list of top subjects!


Glad also that your Dad and the family had a good birthday. This disease does make you grateful for all the good days, which is no bad thing.


Much love,


M xxxx

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Nige had a PICC line for the majority of the two years he was being treated...no problems whatsoever...I got trained in maintaining it, it was so easy. If he does get the opportunity for folforinox after his trial he'll need one as you have the fluoracil (spelling?) part delivered by a pump for 46 hours.

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Thank you so much for that Veema. I did just think after I saw your post... well you will go on Folfirinox anyway and so I called dad and said... well you will go on Folfirinox anyway so it may be a go... one less hurdle to encounter at the same time as new chemo. He jumped at the reasoning and said 'he was thinking that anyway'. I now suspect (actually I know from his reaction) he really wants the PICC line regardless of the risk but was doing the old fashioned 'right thing' around dr advice (that we know is definitely not always the 'right thing'). He has agreed very readily that if I do not hear from the consultant regarding this conference that I will add the need for PICC line into the letter. I feel a little bit shocked to be honest that clearly his voice is not being heard in how he wants his treatment. He is old school and with me being as forthright as I am and the dr's being 'god' it is such a delicate balance and I hope the noise is not drowning out his voice. He talks hugely to my mum and I think mum and me need to do lunch!


Anyway, how are you doing lovely lady. I hope you are both okay. x

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Marmalade. I have been smiling for the last couple of hours thinking of topics we could talk about.. we are all in that same boat in being cancer bores and so answers on a 'postcard' under this thread!


British Bake Off would have been good but just finished. I am going to have a think. It is very consuming isn't it. Topics of conversation would be great, I just freeze at the moment. Like with dads dinner, I had limited tools and so stayed relatively quiet. I had a quite good conversation though over left handedness. Apparently we stir spoons opposite but everyone becomes wonky and puts their fork in the right hand when swirling spaghetti. That is the sort of talk I need. I know exactly where you are coming from with this. x

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