Thanks for sharing your experiences . . .

[Justamo]

I have been a silent observer of this forum since July when I first had an inkling that my husband was unwell. He had complained of tiredness, but I didn't pay a great deal of attention - he is 84, plays a couple of rounds of golf every week and is a hard-working committee member at the golf club. Wouldn't you be tired too if you did all that at 84 ?

Then he had some discomfort in his abdomen which caused some 'tightness' around his chest, so having survived two heart attacks almost 50 years ago he reluctantly took himself off to the doctor. An ECG showed that his heart was OK, so the doc took a blood test and that's when the nightmare began. 'Very high liver enzymes' meant another blood test, and I think I knew then that we had a major problem on our hands. Peter doesn't acknowledge 'ILL' It's not a word in his vocabulary and the only time he sees his GP is on the golf course. I just had a feeling that it was something sinister, so started researching a bit and found this web site. Thank God. An ultrasound showed a 'blockage' so a CT scan was scheduled and Peter's GP tried to talk to him about possible outcomes of the investigations. "Don't you want to know what's wrong, Peter?". "Not particularly", said Peter and changed the subject.

So inbetween hospital appointments I have pored over this forum, got myself up to date on chemo possibilities, learned about various surgical options and when we saw the surgeon (who looked about 25) I knew about Whipples and was able to understand what the surgeon was saying. Peter was still in shock from being told he had an 'obstruction' which morphed into 'growth' then 'tumour' and finally 'cancer' all in one sentence. I was even prepared for the jaundice, but had to admit defeat and ask for help with the accompanying itching. And the help was instant, and kind and sympathetic. Thanks PC nurses, you are great.

So he's had a stent, we've got through the itching with three showers a day, one during the night, some magic powders (URSO ?) and about 15 cans of Magicool Plus for Itchy Skin spray. He has a surgery date for Thursday 15th of this month, and at last we have tackled the subject and talked about IT.

I am sorry to have been so wordy, but I find writing much easier than talking. In any case, neither of us has much in the way of family. I am sure that we are not going to go through something that one of you hasn't already experienced, shared, and for which you have received loads of sensible support from forum members. So thanks for being there, all of you. You have supported an Unregistered Guest for a month already and she's very grateful.

(Of course the moderators, being merciful people, may very well edit this down to a couple of sentences ! ! !)

Mo

[sandraW]

Hi Mo,

Welcome to the forum the place where no one wants to be, but where you will get lots of help and support, glad to hear we have been of some help to you already.

Peter sounds fabulous still playing golf and a committee member too, its great he has been offered surgery, its tough but he sounds tough too.

My husband was much the same, ignored it and hoped it would go away, but its not to be, I was just like you learnt as much as I could about as many things as I could, in fact Trevor's oncologist used to talk to me really just in case Trevor had switched off.

We had the jaundice but luckily no itching, but you sound as though you got that sorted.

Our nurses are fabulous aren't they, so knowledgeable and yet so approachable too.

I wish you both all the best for the surgery and a speedy recovery for Peter, and hopefully not too much stress for you, please let us know how he is and you take care, sandrax xx

[Justamo]

Thank you Sandra for your kind reply. I am trying so hard to keep it all together but inside everything is in turmoil. I'm having total meltdowns over stupid things and the poor cat has wet fur on his back from my tears. He doesn't seem to mind and it's good to have somebody to cuddle when everything looks so black at 4 in the morning. I'm aware that I may very well remember these days for the rest of my life and want to make them happy, not sad. Peter wanting TWO slices of toast with his morning tea is cause for celebration today so I'll forget the black night and concentrate on having a good day.

Yes, the nurses are amazing. Enjoy your day. Mo

[Proud Wife]

Hello Mo

A warm welcome to this forum. I'm so pleased that even as an unregistered guest you were able to get some support here.

I can totally relate to your meltdowns, I call them "moments". Things always seem worse than they already are, in the early hours and bless your cat for being a substitute kleenex!

Yes, memories are going to be so so important in the future so try to make the best of each day, as blinking hard as it is. Sharing my experience (lost hubby 3 months ago after a 14 month battle) there are 2 things that stand out for me:-

1) As hard as it is, try not to put pressure on Peter to eat. It goes against all of our natural instincts but I was told over and over again that it would do more harm than good.

2) I took plenty of photographs and a few videos of hubby during our 21 years of marriage. My son keeps reminding me how lucky we are to live in a digital age. I cannot tell you how comforting they are to me now. My only regret is wishing I had taken more. I do of course have more than enough but when you lose your loved one, enough is never enough.

Unless you say something against forum rules, the moderators would never edit a post if it was too long for example, as far as I am aware and I've done some pretty long ones I can tell you!

I hope that you will enjoy the same wonderful support and friendship I got from this amazing forum family.

Wishing Peter the very best of luck for his surgery. Please keep us posted on his progress.

Much love

PW xx

[Didge]

Welcome Mo. PW us right, the moderators would not reduce a post because of its length, so you post as much as you like! It's difficult to be in this,awful situation and it's sometimes helpful to focus on one bit at a time. At the moment if your hubby is operable, that is something very positive to aim for. sounds like he is very fit for his age which is very important. X

[Guest]

Hi Mo,

Welcome is the wrong word perhaps but you are certainly welcome to share with us and allow us to come with you on your journey. It can be awful some days but you will also see great love and joy too! There is no better advice than to enjoy what you have and embrace everything that gives you pleasure. When you want us (and sometimes when you don't) we will be here.

M xx

[Dandygal76]

Hi Mo

I am glad that you have found the forum supportive. I don't know what I would have done without this outlet and without the support that people have given me. Everyone's mantra on here does seem to be one day at a time and we try not to look too far into the abyss to enable us to have that quality time and live for today. It is amazing how simple things we never thought about become precious.. so many little things matter now. It does sound as though Peter is fit and that they are gearing up for the op. I hope you have successful results and that his recovery is comfortable and swift. x

[Veema]

I'm finding the forum such a relief at the moment...going through a tough time.

My husband had terrible itching whilst he was jaundiced...it is honestly (up until these past few weeks) the illest he has ever felt. As soon as he had the stent and the jaundice reduced, it got better.

Good luck with the surgery...it is tough, was the longest days of my life!

Vx

[Justamo]

A rather mediocre day; it's terribly windy and I am wondering how long the sheets will stay on the washing line. I don't have a tumble dryer, but might have to think seriously about getting one. In the winter I quite often take sheets and towels to the laundry, but that's £10 a time and is alright for 'emergencies', e.g. thick snow, but it won't do for routine use.

I have been reading quite a few posts. Some of them have reduced me to tears, and some of them could be our story. Peter and I are not like my parents were - they were practically joined at the hip and I think they only spent one day apart all the time they were married. Peter and I have always been very independent. I've travelled a lot:

"Can you get your own meals next week - the freezer is full ?"

"Sure, where are you going ?"

"Japan". Or China, or Jordan, or Canada or Israel . . . .

And he has always played golf to the exclusion of all else.

The strange thing now is that I can't bear to be apart from him and he is quite clingy too. I have suffered from chronic pain for the past 12 years (side effect from lots of radiotherapy for stage 3 cervical cancer) and last year I attended a Pain Management course. What a revelation - I've come off morphine and manage the pain with exercise and relaxation. Swimming has been my salvation. I don't really like swimming (so hard to keep your cigarette alight in the deep end) but the hydrotherapy pool in the physiotherapy department provided some relief so I joined a local leisure club. It's changed my life. I didn't realise quite how much until last week when I discovered that I was taking paracetamol on a rather regular basis - the pain had started in my back again and of course I've had no regular exercise for the past month or so what with hospital appointments and GP visits and flying about doing other bits and pieces. So I must fit in my daily dip and workout.

I do understand that more than ever now it's essential for me to be healthy and 100% fit. I just begrudge the time spent away from Peter. Especially if he's awake when I leave and wanting to talk. I'm only out for 2 hours, but it seems awful to leave him. I used to go to daily Mass as well, but that's had to go by the wayside for now, as have my various church duties. I do some design work and as the study is right next to Peter's bedroom I can continue with that because I can hear if he calls me, but it's all very solitary and in a strange way this forum is keeping me company.

He has to attend the hospital on Wednesday afternoon for pre-op formalities, and then he will be admitted on Thursday morning for surgery. I'm dreading it. I rang our lovely nurses on the helpline for advice, and it became apparent that if the surgeon didn't think he was a suitable candidate for surgery then he wouldn't have offered to do it. Why didn't I think of that by myself ? Have my brains turned into mush ? I can usually think rationally and objectively, but I think I am turning into a helicopter mother - one of these people who has to hover continually to make sure everything is alright. And if it's not alright there's precious little I can do about it anyway other than make another cup of tea and open or close the curtains.

What nonsense I talk. But thanks for listening folks.

And I stopped smoking after an aorto-bifemoral graft 2 years ago ! And I can't have a nice glass of wine because I'm scared that I might have to drive somewhere in a hurry. I'll put the kettle on. Again.

Love to all of you, Mo

[Dandygal76]

Have a big fat glass of wine my lovely, you paid your dues and ambulance is at your calling and a cab is never far away. You also must take some time for yourself and not feel guilty. We all get that clingy feeling and it is early days for you but normality of some sort will return.

I gave up smoking 3 years ago... I can assure you I have had moments of temptation since dad was diagnosed but when you think about it logically, it won't bloody help to smoke. It won't make things better and then you will be ducking out of hospital all the time and have that 'can't have a cigarette' stress to deal with on top.

I have everything crossed for you that the operation will be an absolute success. I know it is scary as I remember dad being geared up for it but so many of us would give our right arm to have such an opportunity for our loved ones. I hope he will be back on the golf course very soon and you can continue to live your lovely lives as it should be. x

[Ruthus]

Hello Justamo

Just a quick message to say welcome to the forum. I am sure you have already found the support here very helpful. This is your thread and space to type whatever you feel. It is therapeutic and the responses you will get will hopefully uplift and support you.

I am glad to hear your husband is eligible for surgery. That is very positive news considering only 20% at diagnosis are able to have surgery. I had surgery three months ago and have to say I consider myself recovered and active in terms of walking and functioning day to day. Of course everyone is different and I have fitness and youth on my side but I really hope your husband has successful surgery and his recovery go's to plan.

Be prepared for the first month to be difficult as even moving is an effort. I couldn't believe how sore my body was after surgery and I could literally not move for a few days. The thought of walking was hideous but slowly it got easier and easier. So although it is very difficult I am sure he will slowly recover and get his strength back. It will be normal to be alarmed and worried about his intitial weakness after surgery but trust me it does get better.

Wishing you lots of luck

love Ruth x

[Guest]

Justamo,

I think you are terrific! I used to fly a million miles a year on business so know what you mean. Louis was a lot older than me so we exchanged roles when he retired. You can be very close to someone when you are thousands of miles apart and lonely when you are in a room full of people, relationships are complex things. Don't worry about wanting to cling, why not? Have a good cling and a good cry if you like and laugh at some of the idiocies of this crazy process. I wish you good luck, patience and stamina for the journey. Keep writing and don't worry a jot about rambling and talking about laundry, it made me smile and not much has recently.

Much love M xx

[Justamo]

Ruth, that's exactly what I needed to hear right now. I might even read it out to Peter, although this forum is my secret at present. So glad to hear your progress is good; a bit of good news goes a very long way.

Dandygirl, thanks for permission to pour a nice big glass of something medium dry and cold. This morning I rushed off to the gym and did an hour's exercise in 30 minutes and was home within an hour, every bit if me was sore but it will get better as i get back into my routine. I will raise my glass to you tomorrow night (need to stock up at Lidl).

Marmalade, I read most of your posts and calculated that you were 25 years younger than Louis. I think you are 10 years younger than me. Take away the first number you thought of and you can work out Peter's age which is 15 years older than me. My cat (Boris) is 65 years younger than me. The Queen is 90. I am getting drunk at the very thought of the Château Doleplonk which Dandygirl has graciously suggested, no INSISTED I drink forthwith.

I am not really as facetious as this, it's mostly desperation, but thanks a million for the kind support I've been given over the past few days.

Love to all

Mo

[Dandygal76]

Oh how that made me laugh out loud... I look like a complete nutter in my own living room. Love the cat's name as well. x

[Veema]

Nige's surgery went really well. He was in theatre for about 13 hours, it was a really long, worrying day for me! He came out and totally bypassed intensive care...he spent a night on the post operative care unit and was back on the ward less that 24 hours after the op. Our hospital operate an intensive therapy thing, where they get you up and about as soon as practically possible and Nige was home just a week later. He made a remarkable recovery and we really thought we'd cracked it.

You do need to make sure he does nothing strenuous at all for the first couple of months. Nige is a menace and wouldn't sit still and so ended up with a massive hernia which is now causing problems.

Lots of luck, I'll be thinking of you.

Victoria x

[Justamo]

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]

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]

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]

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]

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]

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

Edited September 14, 2016 by Proud Wife

[Proud Wife]

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]

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]

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]

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.