So apparently my father has cancer now.

[Persephone Hazard]

My parents divorced when I was four, but there was never a custody battle or anything of the sort. They both handled it astonishingly well, at least so far as I was concerned, and I spent roughly 50/50 time with them each all my life. When I was sixteen, I went to live full-time with my father, whom I adored. My mother told me that it wouldn't be how I was imagining it; that when he was the one doing all the main bulk of the parenting we'd butt heads and fight just as much as she and I had. She was wrong. Even after that we never fought; not so much as once that I remember. I lived with him until I was twenty-two.

I'm a professional writer. I earn my living entirely by writing, but I've never managed to write anything that went even halfway to explain how I feel about my dad. We're both rather – eccentric, I suppose you'd say; nobody has ever been able to understand either of us even half as well as we understand each other. Everyone except me who gets to know him well finds him difficult to read, inscrutable, even infuriating – but I can always tell how he's feeling, what he's thinking, what his reaction to something means. All my life I've been trying to translate him for my mother, even for his own family. He never had another serious relationship and he has no other children so it was always just the two of us, and we doted on each other madly.

I could go on and on about how astonishing my dad is; how much he's a bona-fide genius (and he is; he has a photographic memory, has read many tens of thousands of books, and when he was last tested had a higher IQ than either Einstein or Stephen Hawking, which sounds like hyperbole but is actually literally true), how much I love him, how deeply he has always adored me, how essential I have always felt we are to each other. But none of that is the point, of course. The point is that I think he's dying.

On Friday, he got in touch to tell me that he was heading in to A&E because his gallstones had come back. I wasn't too worried: he's had them once before. It wasn't gallstones, though. He's still in hospital – I've spent almost all my time there this week – and it's not certain yet, but the doctors have all told us that pancreatic cancer is by far the most likely option. The last final conclusive test will of course be the biopsy and the results for that aren't back yet (they took it yesterday, so I suppose it will be after Christmas before we know for sure) but he's had everything else – blood, x-ray, ultrasound, CT (twice), an endoscopy, so many different things I've lost track – and it's all pointing very firmly at pancreatic cancer. If it is, his symptoms would suggest that it's almost certainly very advanced already.

I'm twenty-four, and he's fifty-six. My dad dying has always been the worst and scariest thing I could imagine – always, always, my whole life, the very worst thing of all – and obviously I knew it would happen eventually but I didn't think it would be now, not now. I'm barely into my mid twenties. He's only fifty-six. I can't stand the thought of him scared and in pain, of him not ever finishing his PhD or doing any of the many hundreds more astonishing things he wants to do. I can't stand to think of the hole he would leave in his local community, in the lives of all the very many people indeed who he has helped and had fun with and befriended. There isn't anyone in the world better than my dad. He is the most honest, intelligent, generous, compassionate person I have ever met. He can get on with anybody, and everybody likes him. He's a pillar of his local community in so many ways.

I know the numbers; the inescapable 3%. I don't want to write a novel that he's never going to read. I don't want to walk down an aisle without him at my side. I don't want to give birth to a baby who will never know him. None of those things are on the cards – well, neither of the last two, anyway – but I can't imagine how I'd want them *ever* if my dad is gone. I realise that I'm over-reacting, that we don't know for sure yet, that I'm counting my chickens and that some people survive and that maybe it's something else and maybe maybe maybe but I don't – I can't help it, I just want to prepare myself, I know that this is almost certainly very bad indeed and I cannot let it blindside me. My life has been on hold all week and I can't settle to anything or think about anything. I'm freelance, I work from home, and it's all turning into an awful shambles because all I want to do is try and *do* something. But there's nothing to do, of course. I've never felt so helpless, so impotent, so useless, in all my life.

My own little collection of diagnoses – all of which have been evident and problematic since I was a small child though they were only formally diagnosed much later – include borderline personality disorder and major depression. Thanks to a quirk of ridiculous timing I'm just coming to the end of being weaned off my meds so that they can put me on different and much stronger pills, meaning that I am currently unmedicated for the first time since I was seventeen. I can't imagine that this is helping, but something like this happening to my dad would have devastated and destroyed me even at my healthiest. So here I am, and I apologise for the length of this rather bleak introductory post, but I so much wanted to write it all down somewhere that it might be read by people who have been through something similar.

Edited January 15, 2014 by Persephone Hazard

[Persephone Hazard]

And actually I have a quick question while I'm here: now that he's had a stent put in, can anyone make a guess how long it might be before the jaundice starts to lessen? I'm a little worried that it's been two days and it hasn't yet.

[claralondon]

Dear Persephone (love your name)

I couldn't read and run and my heart aches for you, and your post below is so beautifully written.

To answer your quick question first, the stent should help lessen the jaundice quite quickly, I seem to recall my dad getting relief quite quickly. I also read that drinking lots of water helps with clearing the bilirubin but not sure if your darling dad is up to drinking lots if he's feeling very poorly right now.

I live overseas and am just about to run off to work but I promise you you're not alone and I will write back later. There's something in the way your write that reminds me much of the relationship I had with my dad too,and how I felt when he was diagnosed.

I'd be very very willing for the moderators on here to share my personal email if you wanted to talk directly at any time. I've just lived the last year watching my dad live with this disease and always got so much from this forum but couldn't post during his illness as he was extremely private but it would be wonderful if I felt I could put my experience to use to help another loving daughter get through this nightmare.

Lots of love and care

Clara

[J_T]

Persephone, welcome. That is a very moving first post and the love for your dad is very evident. My own daughter and sons felt the same about their dad, my husband Ray who sadly died in October.

The people on this forum will know exactly how you are feeling right now. The sorrow, the fear and most of all the feeling of helplessness and we will try and help you.

Once you get a confirmed diagnosis things will start to happen and you will feel a little better when things are starting to happen, something is being DONE at last!

People always around to advise and listen and two great specialist nurses in Dianne and Jeni can be contacted by phone or email during the week.

From memory I think my husband's bilirubins got to an acceptable level for chemotherapy after about a fortnight, but he was feeling much better before that.

Keep posting.

Julia x

[Persephone Hazard]

Thank you very much; it was lovely just to hear from people who know how it is. He's being released today and he actually feels pretty good, apart from all the stuff that comes along with the (now thankfully waning) jaundice, so I guess all there is to do now is wait for the results from the meeting or whatever it is. (Apparently there's a panel of doctors somewhere looking at all the results together and deciding on the last word for the diagnosis, and dad says we should hear back from them "any time between this afternoon and early January".)

I guess this is the waiting bit, then. He's actually feeling nearly back to normal - a bit battered and bruised from the ERCP and all the cannulas and injections and whathaveyou, but mostly okay. He's even planning on going into work tomorrow - and he still wants to go to the football on Saturday!

I have a friend who works at the Royal College of Oncologists who says that we're in a Trust with a very good reputation, so that sounds positive. There might even be some clinical trials or something, but of course I can't talk about that with dad till we've had the official diagnosis - he's being a total ostrich at the moment, which I can understand really.

[cestrian]

Hi Persephone

Welcome to the forum from which you will get loads of information and support.

In our family I am the Daddy and also the one suffering from PC. It will be the Multi Disciplinary Team studying your Dad's results to decide on diagnosis and treatment. I was given my diagnosis by my GP at the end of May with the comforting words that my PC was not operable and I probably had 4 months or so to live. Well here I am feeling remarkably well after participation in a clinical trial involving a MEK inhibitor and Gemcitabine chemo. I'm now off the trial but the chemo continues and my main tumour and most of the liver and lung lesions stabilised. There is just one little rogue in my right lung that has grown a little though is still quite small but causing a bit of fluid in the lung itself.

We all hope and pray for a favourable prognosis for your father even though the odds may be against it as PC is so notoriously difficult to diagnose until it has quite a hold, Good Luck anyway.

Love and Peace

Mike

[InfoForMum]

Persephone - great choice if it's a pseudonymn, fab if it's your given name - I find my self identifying deepy with you.

First and foremost something practical. I had the same question about resolution of Jaundice and the related itch after stenting. My specific thread on that is below. I hope there's some stuff in there that helps.

http://forum.pancreaticcancer.org.uk/viewtopic.php?f=25&t=1146

For me, that depth of unspoken understanding is split between my parents. I lost my dad 11 years ago to the aftermath of a different cancer and i've lived through finding my current partner and having 2 wonderful children without Dad getting to meet them. He was my rock, the insightful balanced opinion to weigh against my emotional extremes. The wrap around perspective for traumas and conundrums I hadn't had enough life to see clearly. He was hugs that make you feel protected in the way no-one else can. He was a 7 year old scab kneed boy in a 60 year old body making pop guns, burning grass with a magnifying glass and giving me, aged 7, a viciously sharp pen knife so I could learn to whittle, that my mother furiously confiscated before he secretly gave it back.

Like anything else that you fear this much, when broken down into a day at a time it is survivable and there will be a foundation to build from brick by brick. Strenghtened and made richly welcoming with the thread of that ongoing love and all the memories that run through the new walls. But that's for a different time, hopefully a long way down the road.

You've been careful to say you know it might turn out well, but I know it's impossible to not imagine losing him. So understandable. It takes a while to circle back from the overwhelming weight of all that could be to what needs to happen today, tomorrow, the next day. I'm also very, very aware of how mental wellbeing can impact your ability to put those feet one in front of the other so don't be alone with those thoughts. Do come and find us.

Now it's my mum at risk. Her story is fortunate in that she has a slim, slim chance of surgery, but in those first days/weeks after diagnosis when all was not clear it felt like a dealth sentence (how can it not with the first page of google results!). To summarise where she's at. She's 68, generally well, diagnosed mid August, tumor small (2.5 x 1.5 cm) and still local, but lots of vessel involvment putting surgery at the very edge of medical capability/willingness to do - 3 months Folfirinox chemo under her belt mainly stabiliising it, but no shrinkage, trying Nanoknife privately in new year perhaps to be followed by CRT and if still possible, surgery. Day to day it's still Mum and me, just how it's always been with a bit of cancery stuff in between. I know it will likely become a lot more over time, but right now, as far as she's concerned she' has a job to do - doing the right next thing to stay as well as possible - and can't be doing with sympathy or feelings of poor me. People are telling her she's amazing and resilient. I agree, but some of the time her fight takes the form of beligerant teenagerdom. I'm the one sitting across the table giving her "the look" when she starts being rude or shouty when stuff doesn't go her way! Cracks me up and a case of whatever helps.

Having said all that, the weight of this on all of us is always there. I had 10 weeks signed off work as I wasn't dealing with work as well as giving Mum what she needed and Mum has had a few very dark times. Stuff this forum and the specialist nurses have helped me with more than I can say.

I'm not going to talk about the depth of our relationship, partly because it would go on forever and partly because it's there implicitly and explicitly in my own Thread. Along with some of my own thoughts on the combination of dealing with this when one has a messy or unwell head.

Over and above that there's lots of detail about the diagnositic journey, choices about threatment and battles I have had with and for my Mum, just in case it helps.

http://forum.pancreaticcancer.org.uk/viewtopic.php?f=9&t=1137

If the wibbling on is no help ignore me. There are many many fantastic folk here who can offer a great weight of experience and wonderful support so I'll just close by saying take great care and don't be alone.

Sarah

XXX

[MSH]

Thought wibbling might be a dialect word so put it into google, and kind of wish I hadn't.

Who dreams up these things?

[InfoForMum]

:-S OMG - It's a familly word for going on a bit. Cue warning shot to sister and Mum to warn them off!

Thanks for the heads up Mark. Scuse me while I try and scrape the google results out of my short term memory.

Sorry Persephone and everyone else don't google if you're easily offended!

Sarah

[J_T]

well of course I just HAD to!

and

SPLUTTER!!!!

Hilaire! Cheered me that

Keep well everyone, Jx

[InfoForMum]

In my defence: From a normal online dictionary.

wibble [ˈwɪbəl]

vb (intr) Informal

2. (often followed by on) to speak or write in a vague or wordy manner

Sorry to hijack your thread Persephone, was mortified and felt I had to double check. First time I couldn't drag my eyes off the first search result!

[Persephone Hazard]

I'm sorry I didn't get back to you all sooner; I am incredibly grateful to have this thread and am finding the replies very comforting indeed. Well, that and vaguely hilarious!

There was a sort of waning period. This probably happens: he left hospital and then he felt better and then nothing else happened, and we both just sort of got on with it and didn't think about it too much. Yesterday, though, we finally heard back from the Multi-Disciplinary Team.

Yes, it's definitely pancreatic cancer (which we both knew anyway really). He's probably had it for at least five years, though it could have been longer than that. I keep being really weirded out by that fact: my brain keeps being like "when my string of peculiar boyfriends were sleeping on his sofa in all that strange drama back in 2011 he already had cancer", "that time he came to visit me in Edinburgh he already had cancer", "every time I worried about him because he was late home from the pub or limping or whatever he already had ACTUAL CANCER".

They say that it is inoperable, and they're going to start him on chemotherapy. I don't really know anything about chemotherapy. It's got something to do with...with killing off bits of your genes to try and halt the cell division, doesn't it? I shall have to go and look all of this up.

Nobody has yet said anything about either the fox-drug or the gem-drug (which is how I have come to think of them both after reading lots of the posts on these boards) and we don't yet have a prognosis or an idea of how long the chemo will take or anything. He's not even met with an actual oncologist yet.

I feel like everything is moving at an excruciatingly slow pace. The stories I've read on here seem to imply that it often goes rather more quickly than this. I do wish it would all just hurry up so that we're actually *doing* something.

[MSH]

Hi Persephone,

It does seem strange when people say the cancer has been there for years, and I've seen 20 years suggested before. Whether this is as cancer or some pre-cancerous lesion which to my mind seems more likely. My understanding is that generally several genetic faults need to accumulate before you get a full blown malignancy. People with for instance the BRACA gene are born with one so start with a greater susceptibility.

Can I suggest you find out why your father's tumour is inoperable. It will be because of vessel involvement or metastases, and if the former may change after chemotherapy(/radiotherapy). At 56 your father should start with Folfirinox which has much better stats than Gemcitabine, and before this he'll need a line in to administer the drug.

At the very least you should have a liaison nurse who will co-ordinate treatment and tell you the date of the oncology appointment.

Mark

[J_T]

I've also gone through then 'he probably had it then' scenarios, strange isn't it. I too had heard 20 years as a possibility.

Mark makes many good points re your father's treatment, I would certainly ask about Folfirinox.

Best wishes

Julia

[InfoForMum]

Persephone (being careful here to avoid any novel words) the best advice I can give is don't be afraid to call or email consultants directly, failing that their secretaries. Most are more than happy to respond and it keeps you on their radar. Also, if things are dragging and it's something you would consider anyway, look for someone to give you a second opinion about treatment. No reason why you can't have a second opinion first and that also keeps things moving and starts a dialog between different professionals about your Dad's situation.

Might also be worth knowing there are published NHS standards for how fast this should move for you Dad. No harm, if you're seeing delays, to make them aware you know that. Find info here. http://www.cancerresearchuk.org/cancer-help/about-cancer/cancer-questions/waiting-times-for-tests-and-treatment-after-cancer-diagnosis and to quote key bits:

"The Government have set waiting time targets in England and Wales for treating cancer patients. The current targets are;

*No more than 2 months wait between an urgent GP referral for suspected cancer and starting treatment

*Starting treatment no more than 31 days after the meeting at which you and your doctor agree the treatment plan

If patients have to wait longer, it should be because they choose to or because they need extra tests to fully diagnose their cancer. Many hospitals are meeting this target for most patients. You can check these cancer treatment performance figures for yourself on the Department of Health website. http://www.performance.doh.gov.uk/cancerwaits/"

I hope you have a fantastically supportive and responsive team that rallies round you both, but if you don't feel like that's the case you can chase. That's ok. If you want to be involved directly, what helped for my Mum was me having her explicit written permission to ask questions and get info on her behalf.

This may not seem approriate just now, it's just some things others told me that helped at various points navigating this rocky early path with my Mum.

Very best of wishes to both you and your Dad and hoping that things move a bit quicker soon.

Sarah

XXX

[Guest]

Sorry I am late replying to this. I had to reply, you so sound like myself. I too have borderline personality disorder. Me and my dad are also extremely close. We are very alike, so I guess we both know how to handle each other. My parents divorced when I was 5 and I always lived with my mum, when I hit 21, I spent most of my time with my dad, we did everything together. My dad has very recently been diagnosed and it has completely broken me. I share the same feelings as you, and my heart pulled reading your post. I wish I could say something to help, but I know nothing will. I am thinking about you and your dad, and if you want to contact me to talk, then please feel free.

I prayed and prayed that my dads cancer could be operable, but no such look. What breaks me the most is seeing his face, his sadness at what is to come. When he tells me he doesn't want to leave me, and that all he wants is "someone to save his life".

Will stop now. I sincerely send you my thoughts.

[PCUK Nurse Jeni]

Hi Persephonee/Hi Leila,

If you want to get in touch with one another, then let me know, at support@pancreaticcacner.org.uk and I can arrange to swop emails.

Please don't post personal information on the forums.

Many thanks,

Jeni, Support Team.

[Persephone Hazard]

So dad has been in and out of hospital ever since his diagnosis, pretty much; he kept on getting jaundiced again. He's now had four endoscopies, three ERCPs and two stents - and the jaundice just wouldn't go away properly - so there's been no chemo, no treatment. He was diagnosed before Christmas, but they've not been able to start treatment yet. He's lost a lot of weight and he's been at least very slightly jaundiced permanently for months and months.

On Sunday he collapsed in the street and had to be taken into hospital in an ambulance. He was in so much pain, and having trouble breathing; I rushed over there as soon as I heard, of course, and I'd never *seen* him so bad. They did a load of tests yesterday, and now we have a verdict: he has a couple of very bad pulmonary embolisms, huge blood clots in his lungs.

They can be fatal themselves, and they're hard to treat in people who already have cancer, and they prevent them lessening the jaundice which is getting worse again - which means they can't start chemo yet again.

This is just getting worse and worse.

[sandraW]

Sorry to hear about you Dad's problems, thinking of you sandrax

[Guest]

So very sorry to read this.

What is going to happen now? Can he go home?

xx

[InfoForMum]

How terrifying for you both, I hope they manage to stabilise your Dad so you have at least a little while to gather yourselves. So sorry persephone.

[Persephone Hazard]

They stabilised the embolisms, and then the jaundice came back, and then there was an infection, and then he went into septic shock...

Now it turns out that it has spread - to his lungs and to his liver. Today they said that no chemo is going to be possible. The cancer is untreatable. At the oncologist's best guess, he's got 2-6 months to live.

I feel like my world is caving in.

[Guest]

I am so sorry. You have both not had a break with this.

Just remember, it's just a guess.

How is your dad? Is he home? Is he coping?

xx

[Cathy]

I am so sorry to hear this too.

Is your Dad still in hospital?

Is the local palliative care team or Macmillan nurses involved?. They could help get a bed in a hospice or a hospital bed at home if that is what your Dad wanted and sort out meds for symptom control.

I hope you are getting good support yourself.

Take care

Cathy xx

[sandraW]

So sorry to hear about your Dad's problems, take care sandrax