Thanks for sharing your experiences . . .

[Dandygal76]

Mo, I dearly hope that Peter is truly happy in everything else he is doing even though he is switched off to the consultations. I am sure you know there is a known link between PC and depression. It sort of makes me smile for some reason.. how can they determine this link is correlated to the actual cancer cells when I would be bloody depressed if I was given the diagnosis! Anyway, just food for thought.

You can bore us all you like (although you don't).. this may be your safe place to talk cancer but can you imagine me without this forum to ground me. I have learned so much, not just in terms of treatments and approaches but how to mentally deal with this and make sure I see it is dads journey and not my own. I have been humbled by everyone on here.

I think in this lovely information age and with all of our experiences it does not really matter which consultant you get, only how much they listen and respond to what you want. There is limited choices... Furry Fox, Gemcitabine and perhaps if they are forward thinking then GemCap. If you are going for a middle ground between treatment and not then Gemcitabine seems to be the way to go and with the least side effects. I hope whatever you both choose that Peter is one of those who breezes through the chemo, if chemo is the choice you take.

We are here for you always, whatever choice is made just grab hold of it, run with it and never look back. All the choices around this are between the devil and the deep blue sea and hindsight does not work around any of this. x

[Justamo]

DG, thanks for that. I didn't know about the depression/PC link; interesting. I know that Peter isn't clinically depressed; he's browned off, fed up, p.s..d off, etc; for a day or two he was downright angry, then he felt too ill with jaundice to be angry, then he became kind of resigned to the symptoms, but on the whole he is completely detached from it. It helps that his pain is only intermittent and quite well controlled.

You and I and the rest of the forum might be on Planet PC; Peter is not. I heard him on the phone not long ago telling somebody he thought he had 'Prostatic Cancer'. (Two or three of his friends have been through prostate cancer). He appears to be totally uninterested in the subject; where you and I might research every single thing in sight Peter just grabs the remote and switches channels. Now he's telling friends that he's going to have chemo, but that he won't lose his hair.

Before he had his diagnosis from Mr Bogeyman I had printed most of the helpful pages on this website. Once he had been 'officially' diagnosed I tried to feed him the pages occasionally, but he just didn't want to know. The only person in this saga who has actually penetrated this wall of denial is Ms Consultant Anaesthetist; he listened to everything she said and took her advice.

It's not really fair of me to say he's in denial. He is facing up to it, but he sees no point in agonising over what might happen. He dreads hospital appointments because he hates hospitals. The only question he has asked me or his GP is, "Do you think I will be able to play golf next season ?" For a week or so he refused to look for some new shirts in a smaller size 'in case he didn't get the wear out of them' but on Saturday he came prancing home from the Golf Pro's Shop with a bulging carrier bag so he's got over that stage.

Cervical cancer did not figure as one of my life choices. Neither was the need for an aorto-bifemoral graft. I researched both conditions to the nth degree but Peter, true to form, didn't want to know the details. He's the same with his own condition. The Information Super Highway doesn't figure in Peter's world. I have sweated blood trying to teach him how to use his tablet. He can check the football scores, and sometimes watches the i-Player, but that's as far as it goes.

I am playing all this by ear and just reacting to whatever way he wants to play it. Once thing is for certain though - he's going to do it His Way. And maybe, just maybe, his way is better ? His life is not governed by PC - yet.

The really good thing about this forum is the variety of views, every one of them valid. I think I'm getting addicted to the need to tap out every single fear and worry. And equally, I want to know how everybody else is getting on.

Love, Mo

DG : I cannot believe that I checked out a website called SWEATOLOGY. An Ology ? It must be science ! I didn't know there were so many different kinds of sweat. But it was fascinating, and I might tootle down to the healthfood shop if the oncologist won't prescribe the tablets recommended by our PCUK Helpline.

[Dandygal76]

Mo... I fear I am worse. I cannot believe and would never had thought a year ago that I would be looking up sweat issues for someone I have never met and then having an argument with my other half for doing so! Hahahahaha!

You do it absolutely Peter's way and we are all here wishing him well and into the next golf season, whatever route he decides to take to get there. x

[Veema]

He probably won't lose his hair...Nige didn't have much to start with, but never lost any.

I think you've to go along with how they want to deal with it. I'm a need to know everything sort of gal...Nige didn't really want to know anything other than what he had to do to get better...he did everything they told him to. He was the same when Phoebe had her heart condition...he didn't want to know anything about it...talking about it was tempting fate, but when she had her surgery, I knew everything about it and I was ok...he absolutely went to pieces when he saw her in PICU after the surgery with tubes and wires coming from everywhere and a 7" cut down her little 3 year old chest. I think it is a trait of men in general...it's why many of them don't go to the doctors when they are ill...they think they are untouchable in a way.

However, that is an absolute nightmare for us womenfolk and it is lucky that we can come on here and vent, rant and gain more knowledge than we ever thought possible about things like sweat.

I'm off to research broken toes now as I've got a little toe twice the size of the other thanks to my mother's back door and the damn dog.

Vx

[Dandygal76]

Mo, I have thought about this some more (my son is watching a rubbish movie!) and it is interesting that he only responded to the anesthetist with what she said. I think your gut instinct is spot on... he is listening to the people that support where he wants to go on this. I know he did mention to you previously re having the op still but if he really wanted to take that route I feel he would have been a little louder. It is hard to tell though... what Veema said about men earlier is spot on. We should exterminate all of them (my view, not Veema's). x

[Justamo]

You know, girls, the reason we're all in this forum in the first place is because we want to Find Out Stuff, and we have all sensibly picked PCUK as our weapon of choice. No wonder we've got traits in common.

Simples.

V, I'm so sorry about the toe, sounds funny but actually very painful. Ask DG if she can find a website about it. There's bound to be one called thedogbrokemytoe.com. There's probably a website where you can sue the dog on a no win no fee basis too.

DG, your son wasn't watching an awful film like Rosemary's Baby was he ? Peter's been glued to it for hours.

Take care

Love, Mo

[Guest]

Hi Mo,

You just carry on doing what you do and being who you are, you are in the best place to judge what Peter wants and if you are not sure you can always ask…Louis knew his diagnosis and prognosis and that was enough for him, we just had the one day of putting things in order and dealing with how he wanted things to be, well less than a day, just an hour or so really and quite a bit of cuddling and crying but when it was over we agreed not to talk of cancer and hospitals and so on anymore but to get on with day to day life and ordinary things. He knew, he just didn't want to talk about it except choosing his music.

From what you say Peter is in much better general health than Louis was so perhaps he has more options. Louis was offered treatment but with the caveat that his heart problems and age would mean it could be rough going and would take 6 months minimum of a life expectancy of between 10 and 14 months. Louis felt that the odds were not enough to put himself through it. Peter is not Louis, he has his own views and I will be cheering for him and for you if he decides to have some treatment. I'm sure he will make his decision and you will both get on with whatever that is.

I can guess how you are feeling, another uncertainty when you were coming to terms with things, its always so, the next appointment, the next treatment, the next scan, the next results and so on, the merry old roller coaster. Meanwhile you continue to function, deal with the naughty patient (who we all love because he has spirit) and the cat and all the the other normal everyday things that go on around us.

I read Rosemary's Baby when I was a teenager and had nightmares for quite a long time, that's never happened with any other book including all the Stephen King stuff one reads when young. I will be sticking to something a little less lowering for a while.

Much love lovely lady, you and Peter are ever in my thoughts and prayers and I look forward, like everyone else to your wonderful way of posting. Toodle Pip xxxx

[WifeampMum]

Dear Mo

I hope you have a good appointment with the oncologist on Friday and that they prove to be a real asset in Peter's care team.

As Marmalade says, if Peter's health is reasonable he will hopefully have chemo options. I don't know if you've come across the ECOG performance score grades (there's a discussion about them in the 'Advanced cancer' forum) but there are 5 grades and which grade you are influences which treatment you're given.

ECOG PERFORMANCE STATUS GRADES:

0 Fully active, able to carry on all pre-disease performance without restriction

1 Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature, e.g., light house work, office work

2 Ambulatory and capable of all selfcare but unable to carry out any work activities; up and about more than 50% of waking hours

3 Capable of only limited selfcare; confined to bed or chair more than 50% of waking hours

4 Completely disabled; cannot carry on any selfcare; totally confined to bed or chair

And the following comes from the ASCO (American Society of Clinical Oncology) Clinical Practice Guideline for Metastatic Cancer

https://pilotguidelines.atlassian.net/wiki/plugins/servlet/mobile?contentId=4849666#content/view/68091910

I've copied it here it's relevant to above plus it covers other factors that will most likely influence the oncologist's recommendation. Unfortunately Abraxane isn't available through NHS England currently.

---------------------

FOLFIRINOX is recommended for patients who meet all of the following criteria:

* ECOG PS 0-1

* Favorable comorbidity profile

* Patient preference and support system for aggressive medical therapy

* Access to chemotherapy port and infusion pump management services.

Gemcitabine plus nab-paclitaxel (Abraxane) is recommended for patients who meet all of the following criteria:

* ECOG PS 0-1

* Relatively favorable comorbidity profile

* Patient preference

* Support system for relatively aggressive medical therapy.

Gemcitabine alone is recommended for patients who either have an ECOG PS 2 or have a co-morbidity profile precluding more aggressive regimens, and the wish to pursue cancerdirected therapy. The addition of either capecitabine or erlotinib (not available in U.K.) to gemcitabine may be offered in this setting.

Patients with an ECOG PS ≥ 3 or with poorly controlled comorbid conditions despite ongoing active medical care should be offered cancer-directed therapy only on a case by case basis. The major emphasis should be on optimizing supportive care measure.

-------------

[Justamo]

W & M, you're a star. Actually, you are all stars, but WM has read my mind and produced exactly the information that I was going to look for. I have jotted down a few random thoughts but the grading system is invaluable and will help me get matters straight in my own mind.

Top of Peter's list is the currently most distressing problem: night sweats. I have a much longer list. I'm not at all sure that he will cope with side effects of chemo very well, but some lucky people don't suffer as much as others, we'll have to wait and see. I want to know what stage he is at, Mr Bogeyman wasn't able to tell us. Abraxane is available here I am told but of course it may not be appropriate.

I'm trying to type this on the my stupid little tablet and it's changed Abraxane to Abraham. Twice. I'll finish now and try to get to the desktop PC later on.

Thank you, thank you, thank you everybody for the information, love and support.

Love Mo

[Guest]

Very helpful W&M, I wish I'd had it, outcome may have been the same but I would at least have felt informed. Bless you xx

[WifeampMum]

Mo and Marmalade - big cyber hugs to both of you! xx

[Justamo]

Bless you WM. Things are in suspense until Friday, but like Marmalade I feel better informed.

Yesterday was All Souls Day, and today is All Saints Day. I went to Mass and said a rosary for all of you on the forum.

Then I had a good long swim in a deserted pool. Lovely.

Still not got to the desktop PC so I'll spare you a saga tonight.

Love, Mo

[Justamo]

I've spent a large chunk of the night in A & E. Not with My Patient, it was just me and the most agonising stomach pains. A bit like gall stones, but my gall bladder and I parted company four years ago, two days after I got back from boogying around Japan and after an exciting drive to hospital with blue lights on.

Lovely doctor couldn't find anything specifically wrong, but did ask if I was always as pale (no), and was my temp always low (no). So I'm home again with dihydrocodeine and lansoprazole (Google called that landlords old). It still hurts like stink and i have a phone appointment with my GP at ten a.m.

I don't do sore stomachs, not one of my things. I can do you athlete's foot, or chronic pain syndrome, or headaches, but this is a whole new venture for me. Meantime My Patient is lowering his blood sugar by bringing me cups of tea and Boris is sharing his second best mouse with me. He's tucked it up in bed between us, anyway.

Now, if somebody would peel me a grape that would be lovely. It doesn't 'alf hurt, Mum.

Xx

[sandraW]

Hi Mo,

Sorry to hear you are not feeling well, but glad you are being looked after well, 2nd best mouse in deed you are honoured, it will do you good to have a bit of a rest, and I sincerely hope you feel much better soon. Lanzaprozol is a good drug helps me with my tummy a lot. Think google was interfering again at the end of your post as you signed off Mum lol, take care love sandrax xx

[PCUK Nurse Jeni]

Hi Mo,

So sorry also to hear that you have been unwell.

Wishing you a speedy recovery from all the nurses on here.

kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

[Veema]

Mo...make sure you look after yourself and get yourself better...you never know, it might just be a massive trump is needed!

Seriously though, I do hope you are feeling better soon, it's rotten feeling ill when you've got someone else to look after.

Huge virtual hug

Victoria x

[Guest]

Hi Mo,

Hope you are feeling a bit better. Lovely That Peter and Boris are looking after you even if it is a bit Heath Robinson. My doctor daughter collected up all the Lansoprazole we had and kept it as she says it it brilliant for tummy upsets and nights out on the town!

Much love,

M xx

[Justamo]

Just out of hospital after a couple of days - from Wednesday, immediately after GP appointment to now. Peter and Boris looked after each other OK and you absolutely won't believe what happened to me.

I will just catch up with other stuff, then I'll kick-start the desktop and start typing.

Seriously, you won't believe me. If I was a selfie person and I knew what a selfie was, I would have taken one as evidence.

Speak soon

Mo xx

[Justamo]

Right. Are you sitting comfortably ?

GP sent me to hospital, and I was admitted and sent to Triage Unit of Surgical Admissions Ward. A variety of small boys wearing scrubs and stethoscopes and aged approximately 16, 18 and 20 came and examined me, then I was pushed, protesting, to a small ward and invited to Get Into Bed Now. The 20-year old doctor came back and reeled off a list of tests to the smallest of the small boys who scribbled everything down, and I caught the word 'amylase'. I told Dr Kildare that I absolutely refused to have anything wrong with my pancreas, and he looked a little surprised, but then a porter arrived to take me for an ultrasound.

The ultrasound showed that my bile duct was dilated, so I was sent back to the ward to be starved for further tests. It was then that I spotted the name of My Surgeon on the card above my bed.

I'll give you three guesses. Yup. Mr Bogeyman, Mr Bogeyman, Mr Bogeyman.

The Great Man himself arrived shortly after accompanied by Dr Kildare and his other acolytes, and just at that moment Peter appeared in the doorway for visiting time. I thought for a moment that he was going to leg it, but he manned up and shook Mr Bogeyman's hand and sat down to enjoy the fun.

Mr Bogeyman said that he wanted to to an MRI scan to check for 'gravel' and in the event of finding some they could easily 'hook it out' by shoving a tube down my throat. By then I was too sore and tired and confused and worried about Peter looking after himself to argue further, so spent a miserable night watching Mr Bogeyman and his team admit an elderly lady for some unspecified surgery involving a colostomy which had blocked or was failing in some way. And ladies, it will come as no surprise to you to learn that the poor lady in question was 95, yes, ninety-five years old. They got the Heart Man out of bed, they got the Kidney & Liver Man out of bed and they got the Gas Man out of bed. I was quietly hoping that it would be Ms Consultant Anaesthetist so that I could watch her beat him up, but sadly it wasn't. People scurried about all night long, but at 7.30 this morning they decided not to go ahead.

I went for an MRI scan at 10.30. At least, I thought, I'll be able to have a cup of tea afterwards, but no, I was rationed to sips of water in case any further procedures were required. The pain had settled a bit by now and as I hadn't eaten since Tuesday I would have liked a little something, but no. Water was all I got. Mr Bogeyman and his little helpers were all in surgery and not expected back on the ward until early evening, so I've spent the day trying to read my Kindle against a background of bleeping drips, bleeping call buttons and watching a nurse hand out Creons to the lady in the next bed to take 'after meals'. Honestly. The poor lady was dark yellow (but fortunately not itchy) and told me solemnly that the Creons helped her to sleep.

At 5.30 this afternoon Mr Bogeyman appeared and told me that the MRI had not indicated any stones or gravel, and that whatever had caused the pain may well have passed through naturally, and that as my pain had eased I could go home.

My rucksack got packed PDQ, I threw trousers on over my pyjama bottoms, waved goodbye to my fellow patients, especially the 95 year old (who was now sitting up demanding her tea) and left.

So, back to the drawing board. Oncologist tomorrow. Peter has managed to look after himself quite well; there were some emergency meals in the freezer and he cooked some rice all by himself and has written down all his numbers in the notebook. His blood sugar looks OK and the cat isn't any thinner, so maybe I'm not as indispensable as I thought.

My darling cousin saw her surgeon. She has mets in her lymph nodes and her lungs. She said the surgeon was absolutely lovely, he's told her that surgery is not an option and is arranging a PET scan so that the team can draw up a treatment plan. Jo thinks that 'no treatment' is a reasonable option, but her partner wants to fight it, so they will have a look at the suggestions and decide then. As Peter can manage for a couple of days I will try to visit her for a couple of days next month, but it means some flights and car hire so will have to be carefully timed to take advantage of cheaper fares.

Boris is only just Speaking to me. He has indicated that he may well need counselling, or possibly a few prawns before he is on friendly terms again, so I need to stop typing NOW. You probably all went to sleep by the second paragraph anyway. Peter has popped out to see friends, and his friend who had skin cancer has just phoned to say that his results are good, and there is no spread.

Thank you for your nice messages. I read them when I got home from hospital and they made me feel all warm and glowy and huggy.

Must dash to talk to Boris. These Huffs can get out of hand if not tackled promptly enough.

Love, Mo

[Guest]

Dearest Mo,

You don't do things by halves do you? I hope you are feeling a little better and managing to get some rest, all this excitement is wearing.

Of course you are indispensable! Peter and Boris were worried about you and made a supreme effort not to get into any trouble. When someone else is doing things for them they just don't bother trying, that's all.

This Bogeyman thing has to stop. You don't have to see him even if you are admitted as an emergency, really you don't, just ask for someone else or a second opinion, or his registrar. It happens all the time.

My big concern is you. You have to recover and or find out what was wrong with you and make sure you are absolutely better, something unexplained that puts you in hospital needs watching and you need some TLC

So sorry about your cousin, I know Peter is well and she is holding her own but go as soon as you can if you feel you want to. One thing that is clear from this site it's that we all have to seize the moment and not put things off.

Much love to you and to Peter and Boris, M xxx

[Veema]

Flippin' 'eck Mo...what a day! I agree with Marmalade though...you absolutely can (and probably should) ask for someone else. If I ever come across Locum Oncologist who was not on the ball with Nige ever again I may have to be restrained.

Look after yourself and I hope you are feeling better soon.

Much love

Vx

[Justamo]

You know you're on Planet PC when a large, slightly frightening (at first glance) man offers to fill your husband up with toxic waste and you're grateful, even though you quite like your husband and weren't actually looking for a hit man for him.

Yesterday we went to see the oncologist and he told us exactly what we wanted to hear, and he put it so positively that we came out feeling happy and confident. He had a nice way with words : "I look at your date of birth and I think 'Oh dear' and then I see you with no lines on your forehead. 'Nurse, observe that he has no lines on his forehead.' "

Dr Feelgood is from Nigeria, got his degree in Dublin, is beautifully laid back and chilled out and smiley and kind. Not like Mr Bogeyman who is tense and bustling and important - a total opposite, and perhaps that's why we liked him. He wants another endoscopy to try to get a biopsy, said that he would get it fixed right away, and then chemo (just Gemcitibine) will start on 23rd November. I asked about Furryfox and he said that it was too aggressive for Peter, and that feeling good was more important than living an extra month. Just one cycle is currently pencilled in, with a clinic visit afterwards to see how things went and then he would plan the rest of the treatment.

I asked about the night sweats, and the possibility of some medication for it, but Dr Feelgood smiled beautifully (lovely teeth) and said sweats were part of the disease, Peter would have to put up with them, and that he didn't want to fill him up with more drugs which may have side effects of their own. That's EXACTLY what Peter wanted to hear (you can't even get him to take anything for a headache) so they were both very happy with each other and I no longer have the feeling that I have to monitor everything. The staff in the MacMillan Unit were lovely, we got offered tea and coffee all the time, and it was good to sit and relax and know that you're in the right place - at last.

We had some lunch, spent a bit of time looking for a suitably butch bag for Peter to carry his Diabetes Emergency Kit around (haven't we come a long way ?), got home and Peter celebrated by having a nice big hypo so the jelly babies got a bit of a bashing. All was well though, and he recognised what was happening and would have been capable of dealing with him himself if I hadn't been there to bossily take command of the situation.

We've had a quiet day today. I'm still a bit sore, and I don't need much of an excuse to let the washing fester in a corner so nothing much got done. We both feel a lot happier, Peter is asleep in the armchair, Boris is speaking again; he watched the fireworks from the windowsill and now that Strictly is over we're going to loll about and do nothing.

Hope you've all had a good day. Nobody's has posted since Thursday which makes me wonder if everybody is OK. Hope so.

Take care

Love, Mo

[Proud Wife]

My lovely funny Mo (funny ha ha not funny strange)

I am so sorry to hear you've been poorly and I was not around to offer a very large cuddly virtual shoulder. I hope you are soon back to full health. As if you've not been through enough as it is.

I am loving Dr Feelgood. He sounds just what Peter need. Excellent plan of action and I hope Peter copes well with Gemcitibane. Will chat more when normal service is resumed. It's at times like this that you wonder how we every coped in the days before the world wide web!

Love to you all, especially Boris. xxx

[Veema]

Good...

I am pleased that Peter has been offered treatment...as for folforinox, there was an older lady having it when Nige was and she was fine on it...I dont think it's an age thing. But anyway, gemcitibine is good.

I am also pleased you're feeling a bit better, I was getting a little bit worried when you hadn't posted (being the prolific poster that you normally are)...but you are, of course, allowed time off for good behaviour.

Take care

Vx

[Justamo]

Just booked flights and a hire car to go and see my lovely cousin at the other end of the country on 17th November, back home on 20th November. Peter's chemo starts on 23rd November, he is probably having another procedure before then, so I really hope my dates work out. You have to book so early to get a reasonable fare so I've just Gone For It. If I have to cancel then it just means I've lost money, and money is about the only thing in this world that you can replace. I'll just have to sell a few oil wells or something.

Peter's well and happy today, telling everybody how good he feels now that a plan is in place. I made him read the information sheets they gave us about his chemo. Not pleased with me, but he has to make an informed decision, not me, so he must do it himself. He claims he's read everything now - it only took him 5 minutes, and reading a bus ticket usually takes him half an hour, but I'll settle for that because it's the best we're going to get.

So Peter's doing sleeping in front of the telly, Boris is doing sleeping in the airing cupboard, and I'm doing the equivalent of painting the Forth Road Bridge. I'm tidying my study. Again.

Take care

Love Mo