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Justamo
Posts: 465
Joined: Sun Sep 04, 2016 10:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Mon Sep 12, 2016 10:30 pm

Victoria, thanks for the advice about 'nothing strenuous'. Peter will judge washing up to be strenuous, but will no doubt consider swinging a golf club and lifting a heavy bag as therapeutic. I will wave your post under his nose and threaten him with a hernia if he gets ambitious.

It sounds as though you have been, are are still, going through the mill. I checked your early posts to see how old your guy was, and I should think he's 54 now. Peter is 84 but thinks he's 54. I imagine that after surgery he will feel 104.

Why am I so obsessed about ages this evening ? Ridiculous.

Thanks again for taking the time to help out a panicking newbie.
Love and God bless
Mo

Veema
Posts: 498
Joined: Mon Feb 02, 2015 5:35 pm

Re: Thanks for sharing your experiences . . .

Postby Veema » Tue Sep 13, 2016 9:00 am

Yes...he's 54...it's no age really is it? He's my second husband...we've been married just 11 years and have a 10 year old daughter...I'm 45...thought we'd grow old together.

I think it's brilliant that Peter has been offered surgery at 84, he must be fit as a fiddle apart from the obvious...you read all too often these days about older people not being offered surgery purely because they are older, I really hope it goes well for him.

Vx

Proud Wife
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: Thanks for sharing your experiences . . .

Postby Proud Wife » Tue Sep 13, 2016 12:44 pm

Oh V, I had no idea you were so young. I'm 53 and thought we would also grow old together. 11 years age difference between us and 2nd marriage too. I am so so grateful for the extra 10 years of marriage we had. My heart goes out to you, especially with a daughter so very young.

Hi Mo, Totally agree with V that Peter must be super fit and I totally agree, you are as old as you feel. Doesn't matter if you are obsessed with ages, laundry or what to make for dinner for that matter, you've just got to get through this no matter what. Remember we are all here to give as much support to you as we possibly can because we all know what it's like. Take care of yourself too lovely lady xx

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 10:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Wed Sep 14, 2016 9:30 pm

This nightmare has got even worse. This afternoon we went to hospital for pre-op and final bloods, and had a chat with the surgeon. He was very gung-ho and practically rolling his sleeves up ready, and then mentioned that the anaesthetist was going to have a chat with us as well.
A young woman in jeans and sweater, and towing a junior in her wake, briskly introduced herself and then delivered a mighty blow. Peter's blood was unsatisfactory. He was anaemic. His kidney function was unsatisfactory. His blood sugar was exceptionally high. His age was off the scale, and altogether he was an unacceptable patient. She warned us that if his breathing was the slightest bit compromised then she would have him on life-support faster than you could say knife. Or scalpel I suppose. I asked meekly if Peter was her father, would she proceed with the op. "No", she replied, "there's too much that can go wrong".
She summarised by saying that if there were no beds available in ITU tomorrow then the op would be cancelled. She told us to go home and have a serious conversation about whether or not Peter should have the op.
I cannot fault her honesty. She voiced all the concerns I was already harbouring about the Whipple's, but why didn't she and the surgeon discuss this a week or more ago ? All the information was available to them then. Actually is was less of a discussion and more of a diatribe against proceeding.
It has left us in turmoil. I drove us home, sobbing. Peter is confused, frightened and looking for direction. So we had a nice cuppa tea and tried to talk about it and failed. Then close friends called in and we told them about it, so our plan is to go to hospital at 8 tomorrow morning, find out if the operation has been cancelled or not (ITU beds) and then talk to the anaesthetist some more.
So I don't know what's happening. If we do nothing he will die. If we go with the op he might die. Clearly, this is Peter's decision, but in accordance with his policy of blanking out anything that he doesn't want to hear he is looking to me for guidance. And right now I couldn't guide us out of a paper bag without help. I wish we had one of those big noisy families that fight all the time but always turn up in a crisis and make ham sandwiches and put the kettle on and get it all sorted, but all we've got is a cat. I do have a stepson but he hasn't been a lot of help to his Dad so far and is very needy himself, so no point in asking him.
I'll update you tomorrow on what has happened. I thought these sudden reverses and twists and turns only happened in TV soaps. You couldn't make it up, could you ?
Mo

Veema
Posts: 498
Joined: Mon Feb 02, 2015 5:35 pm

Re: Thanks for sharing your experiences . . .

Postby Veema » Wed Sep 14, 2016 10:11 pm

Oh no....!!!

What a dilemma. It is a huge op, like I said in an earlier post, Nige was in theatre for about 13 hours...granted some if that is preparation but it's still a long time under anaesthetic.

Good luck with the decision.

Vx

Proud Wife
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: Thanks for sharing your experiences . . .

Postby Proud Wife » Wed Sep 14, 2016 10:40 pm

Hi Mo

I'm so sorry you don't have family to bounce off. It's just what you need at times like this. I don't want to tell you what to do, it's not my business but playing surrogate daughter for 5 mins, if you were my mum asking me what to do, I'd probably say don't put him through such a heavy operation. You must read marmalade's story. Her husband Louis was pretty much the same age as Peter. He chose the no treatment option. That might give you some inspiration.

Apart from the risks of the op, what is peters quality of life likely to be post op -v- quality of life if he doesn't? Yes I totally understand what will happen if he doesn't have the op but have you thought about what you could do with however much time is remaining Rather than he spend an unknown quantity of time in ITU? My hubby made the most of every day even when he struggled to get out of his chair and we had good times for which I'm so so grateful.

You and Peter must make that decision yourself and I so hope I've not upset you by this post, please believe me when I say I have only the best intentions. Peter"s your husband so of course you will do anything to keep him with you for as long as possible but at what cost if clutching at straws? My hubby died suddenly and I'm grateful he did. Yes he had metastatic disease and had to endure chemo etc but he didn't suffer much, compared to others and for that I'm relieved. With metastic disease you can but hope for time. But every day hubby would say to me quality over quantity.

I hope this all comes across in the way it's intended. I have tried to read between the lines and if I'm out of order by saying this, please forgive me, I'm only trying to help you see the woods for the trees if there's no-one else you can turn to.

Wishing you strength and courage. You will both be in my prayers tonight xxx
Last edited by Proud Wife on Wed Sep 14, 2016 11:04 pm, edited 2 times in total.

Proud Wife
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: Thanks for sharing your experiences . . .

Postby Proud Wife » Wed Sep 14, 2016 10:44 pm

And I agree, it's shocking that the surgeon didn't discuss this with the anaesthetist before offering the op. You wouldn't have such a dilemma if that have of happened x

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Thanks for sharing your experiences . . .

Postby Ruthus » Wed Sep 14, 2016 11:28 pm

Hi Mo

What a horrid day for you both. It's awful to psychologically build yourself up for surgery to find out the day before it may not happen. I am surprised the multidisciplinary team have not all got together to discuss your husbands case. (This may have happened and maybe I've wrongly assumed it hasn't taken place). That way you get each individual's opinion on their area of expertise and you may find the surgeon think one way but the Oncologist has a different view, but all the experts discuss from their own angle of expertise weigh up the pro's and cons for each individual patient and reach a mutual shared agreement to best course of action for each patient.

It maybe worth asking if your husbands case was discussed in a multidisciplinary team meeting and what the general consensus was with regards to treatment. A decision to undertake surgery is not taken lightly as its recognized as being major surgery with significant recovery. If the surgeon thinks they have a good chance of removing the cancer and gaining negative margins and general fitness/health is good I would think surgery would be advisable. Have these issues been discussed with you? However as its recently been discovered that there are concerns about your husbands general health It might be worth asking for a second opinion from another surgeon or discussion between the whole team in order to weigh up potential outcomes, pros/cons and cost benefit analysis. When the expert views are fed back to you both you will hopefully feel you can make a decision based on more information.

Of course this has to be your decisions but I think you need to feel armed with all the knowledge and information from the whole team in order to be able to make a well informed decision that is right for your husband rather than being lead by just a couple of health professionals opinions.

I am wishing you both all the luck for tomorrow.

Ruth x

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 10:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Thu Sep 15, 2016 5:35 am

Proud Wife,Ruth and V, you all talk so much sense. I did indeed read, and was influenced by, Marmalade's account of Louis' illness.
There doesn't seem to have been any joined up thinking amongst the people who are able to sit in judgement on Peter's fate. We haven't even seen an oncologist. My feeling is that I love him too much to see him go through surgery, but clearly, without surgery he will die. His quality of life right now is not good. Just how much better will it be after surgery - if at all.
I believe that there is an MDT lurking around somewhere because the GP referred to them. This has to be Peter's decision but each day he is getting a little sicker. Tonight I have heard him getting up for a pee at hourly intervals, and his thirst seems unquenchable so it seems that his diabetes is deteriorating rapidly. It was only mild type 2 and no medication when all this started.
It's 05.30. God alone knows what the situation will be in three hour's time.
I'll let you know what happens later.
Love, Mo

sandraW
Posts: 1032
Joined: Thu Oct 31, 2013 5:38 pm

Re: Thanks for sharing your experiences . . .

Postby sandraW » Thu Sep 15, 2016 9:48 am

Mo, its a terrible dilemma for you, I still remember the day Trevor went for his operation, its just over 3 years ago now, they frightened the life out of us with the statistics, we too had a major blip as hey found Trevor had an irregular heartbeat, they knew actually but didn't do anything, until 10pm the night before his op getting someone to come over from the other hospital to do all the necessary scans at 11pm, when we saw the anaesthetist the next morning he told us all the things that could happen then said "but I'm not really worried and you will be fine", which he was sailed through the operation, BUT the disease came back, well it was still in there but no one could see it.
I feel for Peter what a decision, he will not want to give up for your sake, but its a lot to put himself through too. Just to let you know I am thinking of you both, and hoping for the best, please take care love sandrax xx
PS are they not treating his blood sugar? he will feel lousy if his readings are high.

Dandygal76
Posts: 746
Joined: Sat Mar 12, 2016 9:49 am

Re: Thanks for sharing your experiences . . .

Postby Dandygal76 » Thu Sep 15, 2016 11:42 am

Hi Mo, what a nightmare the day before to go through all of this. I cannot recall but are you a specialist centre for pancreatic cancer? It is highly recommended by every Pancreatic Cancer Website that you are overseen at one of these centres.

It is a very tough decision and there are no rights and wrong. You and Peter know his personality, whether he is dogmatic enough and how fit he has been on a day to day to basis. As with everything around this cancer you are behind the devil and the deep blue sea and a lot of it is taking a punt in the direction your instincts tell you and hope for the best. I know that is an awful answer but it is the only answer sometimes with this awful diesease.

If you feel you have time I would get a second opinion or definitely get to a centre. As regards his anemia and blood sugar I would also be pushing for that to be brought under control. There is a lot of supportive things they can do to assist with this and I agree with Sandra... a lot of his feeling ill could surround that rather than the cancer. Also, his age is not off the scale and he should be looked at as an individual and obviously part of that is looking at his age and fitness but by saying he is 'off the scale' suggests he is being measured against a standard age that is acceptable by the doctor rather than by his own strength and fitness. I am sure it is Age Concern that lobby against this and it may be worth a call to them for advice or exactly what age the consider 'is off the scale'. It does feel a little bit like the anesthetist has walked in all last minute and that is certainly worth some polite challenge.

I also agree with PW with her assessment that quality over quantity for some patients but if Peter wants to fight back then that is the answer. I say the same about my dad, as long as he wants to fight I will find every means at my disposable to keep those choices open. The anesthetist may say that if it was her father she would not do it but we are all individuals and shaped by our experiences and it would not be her decision, he may have another view to his daughter. She doesn't know you, her father could be frail and elderly.

I think what I am trying to say is that there are many different considerations and all you can do is listen to all the advice (including the anesthetist) and yourselves and then trust your instincts.

I am afraid these twists and turns are all part of PC and I doubt this will be your first hurdle!

This all could a mute point by now with Peter in the op.

I wish you all the best, whatever the decision.

DG

PCUK Nurse Dianne
Posts: 271
Joined: Tue Aug 14, 2012 3:29 pm

Re: Thanks for sharing your experiences . . .

Postby PCUK Nurse Dianne » Thu Sep 15, 2016 12:56 pm

Dear Mo,

Thinking of you today on what is a very difficult day. I do apologise that I have only just caught up with your thread and the dilemma you must be facing. I appreciate that at this time of the day you will have had some input and/or made some decisions.

Mo please feel free to be in touch so we can chat through things with you. If you are at the hospital during the day, you know you can be in contact by email.

Dianne
Pancreatic Cancer Specialist Nurse
Pancreatic Cancer UK Support Team

Marmalade

Re: Thanks for sharing your experiences . . .

Postby Marmalade » Thu Sep 15, 2016 1:23 pm

Hi Mo,

I don't know if you are even reading this today and my heart breaking reading about your terrible shock. My daughter is a consultant anaesthetist and works in a University hospital which is a regional centre for major trauma and cancer. I am truly sorry that your experience with anaesthetist has been so devastating but unbeknown to most people anaesthetists are a) highly qualified doctors in their own right and b) the people responsible for keeping the patient alive during surgery. They are not always on the multidisciplinary teams and may not have seen Peters notes until very recently.

I see things slightly differently to others I admit, but I do think that some disciplines, oncology, and surgeons in particular present an unrealistic view of treatments and outcomes for this cancer. I know why they do it, because the evidence says that if patients have a positive attitude they do better, but to give people false hope is not a good thing as some poor devil has to burst the bubble at some point and deal with what feels like a betrayal.

If Peter feels he wants to fight this awful disease and believes that the time gained is worth the trauma then he should be helped to do so by all possible means and you must back him 100%. He should not however agree to treatment because of the distress of those around him, and if he decides on quality over quantity, then he should be helped to have the very best time he can have, hospital free, pain free and with the people he loves and should not feel he has failed in any way.

I know that Peter will make the right decision for him and that you will be there for him. I send you every ounce of love and every good wish I have left. M xx
Last edited by Marmalade on Thu Sep 15, 2016 6:04 pm, edited 2 times in total.

sandraW
Posts: 1032
Joined: Thu Oct 31, 2013 5:38 pm

Re: Thanks for sharing your experiences . . .

Postby sandraW » Thu Sep 15, 2016 5:16 pm

Thanks Marmalade, yes I think we do forget all that the anesthetist is responsible for and tend to think they just stick the needle in and watch that black thing go up and down while we are asleep, I suffer with high blood pressure and went to the hospital with an injury to my leg, it left a massive blood blister, they thought I was at risk of blood poisoning so needed surgery that day, when they took my blood pressure it was off the scale not helped by Trevor being in tears, he was undergoing chemo at the time, at me being ill.
The anesthetist was lovely told Trevor very nicely to go home, sent me across to the main hospital for an ECG and told me to relax and think peaceful thoughts, it did finally came down enough for me to have the operation. He explained that is was so high he just was not able to give me anesthetic as it would have been too dangerous, there is no good having a fabulous surgeon do his job if the patient is not going to make it due to other issues.
I suppose that is why we go for the pr-op assessment, to have things finalised, but it was very late in the day to have that thrown at them when you have worked yourselves up to have such a massive surgery. just wishing for the best out come for them sandrax xx

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 10:38 pm

Re: Thanks for sharing your experiences . . .

Postby Justamo » Thu Sep 15, 2016 10:30 pm

I see that my last post was at 0530 this morning. It feels like a lifetime ago.

We reported to the admission ward at 0745 this morning, and Peter changed into a stripey frock and some stockings and a blanket, because his temperature was quite low. Blood pressure, more bloods, and general fuss and at 0800 the Anesthetist appeared towing a rather reluctant surgeon with her. She asked us if we had come to a decision, and then said that as there wasn't an ICU bed available she wasn't prepared to proceed with the op, so no matter what we had decided it wasn't going to happen today. She also gave us to understand that if Peter's operation was a horse, she wouldn't back it. Then she said she'd leave us for a Little Chat with the surgeon, and whisked off. Actually, I'm going to start a fan club for her, but more of that later.

Mr XXX sat down rather nervously and asked how Peter felt. Then he began to talk. All the 'little risks' of a fortnight ago now appeared to be major risks. The 'little problems' were now described as life threatening. Far from being up for it and gung-ho he was very subdued, and when I mentioned infections and hernias (Thanks, Victoria) he muttered an admission that of course, everything carried a risk . . . . In short, Mr XXX couldn't wait to get his important little arse out of the ward and I got the distinct feeling that Mr XXX's arse had been quite thoroughly kicked by Ms Consultant Anesthetist.

So we had a cup of tea, and the lovely nurses brought a plate of hot toast and butter for Peter, and by the time Mr XXX came creeping back in back in we were feeling a bit more level-headed. Peter said that the only reason he wanted to go ahead with surgery was because he didn't want to spend one more day feeling as ill as he did. Mr XXX immediately offered to rectify some immediate problems: his special NHS X-Ray eyes told him that Peter's stent may have blocked, and he could fit a metal one within a week and that would be much more effective and get rid of the lingering jaundice. Peter's unacceptable blood sugar of 29.7 could be dealt with by a Specialist Nurse RIGHT NOW, and he would arrange that STRAIGHT AWAY. We could have Creons. (I have been asking for Creons for the past three weeks). We could see the Dietician IMMEDIATELY. He would order a bag of iron to be infused STAT and that would temporarily alleviate the anaemia. He would arrange for the rain to stop and the sun to come out. You get the idea . . . . Then he slithered out of the door and I hope I never see him again because I want to punch him. Hard.

So they set up a drip of what looked like Coq au Vin sauce, and the Nurse Specialist arrived with a trolley bag full of insulin goodies for us, and she taught us how to do insulin injections and use a blood sugar monitor. We played Casualty for a while, and then an enormously fat lady appeared with a badge on her huge bosom saying 'Dietician' and she gave us lots of little leaflets and books and - wait for it - a prescription for Creons. I've got to feed Peter on carbs, and carbs, and fat, and carbs and Creons until he gains some weight. Fortunately I had a shopping bag in my handbag and we crammed it full with all the leaflets and books and needles and test thingies and insulin pens.

It was 13.30 by now, and the nurses gave us some sandwiches and ice cream, and the Nurse Specialist popped back to make sure we were OK. They really wanted Peter to stay in for the night, but he was desperate to go home, and they agreed. So he changed out of his striped frock and stockings, packed his pyjamas and teddy and slippers into his little case and we went off home. I had to go back to collect the Creons, because the Hospital Pharmacy hadn't delivered them to the ward, but I was able to get Peter settled, in front of the telly and contented just to be home again.

We had a minor crisis this evening when we couldn't get the blood sugar monitor to work, and we dripped blood all over the cat, and the oven timer went off (the oven was full of carbs), and the phone rang, but we managed eventually. We've got another Nurse Specialist coming to the house tomorrow morning, and it happens to be somebody that Peter plays golf with, so I hope they stop talking for long enough for this chap to show us what we did wrong with the monitor thingy.

The heroine of the piece is Ms Consultant Anesthetist. She told the truth, the whole truth, etc. She voiced every one of my concerns and dealt with them all in a factual and totally professional manner. She spent over an hour with us yesterday, and it was possibly the most important hour either of us will have during this spell. Every single issue was explained to us, unvarnished, and every tiny detail became clear. "The surgeon cuts you up", she said. "I keep you alive afterwards".

I just couldn't wait to get back home, relax in front of my PC instead of the silly little tablet with its stupid keyboard, and catch up with you all. I can't talk like this to anybody else, the cat is a good listener but he's inclined to go to sleep before I've finished.

So I've got my darling Peter home, I can make him comfortable for now, his various symptoms will be dealt with as well as possible, and he can relax in peace and dignity and not struggle to recover from surgery on top of everything else. Marmalade is a role model: her concern for her beloved Louis mirrors mine for Peter. I just hope I can make him as happy as she did Louis.

As so many of you have said, "One day at a time".

I'm really tired, I'm probably talking nonsense, and I want to go to sleep. But I had to dump all these feelings on somebody, and get it out of my system.

Thank you all so much for your support. I hope I will be able to offer the same to you once I have settled down a bit.

Love, Mo.
Last edited by Justamo on Thu Sep 15, 2016 10:49 pm, edited 1 time in total.