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The rollercoaster continues...


Saturday was brilliant but Saturday night was not, and the days have been marked by more pain since. We've taken it very quietly. The jaundice came back and receded again. I've talked at length to our MacMillan nurse and our GP and we have an appointment with the consultant tomorrow.


Pete hates to be ill and is very stoical. So he tries to manage and is finding it very difficult to accept that he needs some help. We had a very honest talk last night about how he is and how it doesn't help. For example if he feels pain or nausea he sits still, doesn't say anything and shuts his eyes. Then I have to ask how he is feeling. We also talked about eating (or not). I hope that we will find a new way of being. We upped his MST again last night and I hope that helps too.


It has been 2 months and 2 days since the first day Pete said he didn't feel well enough to go to work. The decline in that time has been shocking. I cannot see that he has long left at that rate of decline. We talked about a life insurance policy that pays out if there is a diagnosis of terminal illness and death is expected within the year and Pete seemed genuinely surprised that he might not be here this time next year. I was shocked at that. But later we talked about the mirror and I discovered that Pete just never looks at himself in the mirror - so his self-image is out of date! I look at him all the time and see a dying man - plain as plain can be.


I rang up about the insurance and we now have a claim in progress - we will use that money to give to our girls for petrol, and to treat them and ourselves, and ultimately to pay for a good funeral.


I hate this disease!

Sue

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Sue - we have never met but every time I read your posts, I am struck by the similarities. Pete is so like my Gary in his attitude, things he says and does takes me back time and time again...memories of Gary saying and doing the exact same thing. I think I often annoyed him when I needed a reality check discussion. We sorted out all the practical things after his diagnosis, insurance policies, pensions etc but he did not want to discuss the progression of the disease or contemplate that it was progressing at all. He would often show me how to do certain things that he had always done because he wanted to be sure that I could manage without him but then he would be reluctant to talk about funeral arrangements. It was as if in his mind he separated being terminally ill with the fact that he was going to die. I don't think it was denial - more a need to be fighting and not giving up. He never complained and often sat in pain with his eyes closed, saying absolutely nothing - I am still not sure to this day what he endured in silence. I have never known such courage. He was like this until his last breath, Sue, he may well have known he was dying but he was still talking about what he would do when he felt a bit better! I struggled with it at the time because I had a great need to have that talk - the one where you say everything that is important but he wasn't on the same page as me and I think he was right in hindsight - we told each other we loved each other and that says it all really. Sorry to talk about me but I only do so in the hope that you recognise some of things I say and that it helps somehow. It is the most awful thing to watch your husband deteriorate but you, like I was, are quite aware of what is going on, ready for what is to come and will be with him every single step so he never feels alone. I do hope when you see the consultant, you can get some more information about where you are (Gary never wanted to know, so I had to guess or read between the lines). Ultimately you know Pete best and between the two of you, you will carry on doing wonderfully. Sending you lots of love, Sue, and thinking of you.

Deb

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We've been back to hospital today. Pete is more jaundiced, chemo has been cancelled for the next two weeks. Apparently the gemcitabine is excreted in bile so you cannot have it when the bile duct is blocked. He needs a stent inserting into the bile duct and that will happen one day next week. Another hospital stay, another anaesthetic but it's what we expected. The consultant did sweet-talk her way into getting him an ultrasound today - done in the ultrasound doctor's lunch-hour (and the u/s consultant) which saved another wait as they won't do the stent until the ultrasound has shown that is what it definitely is. The good thing about today's visit was sorting out lots of queries and medicine issues. Turns out Pete can stay on the anti-emetics that really work for him all the time - yippee!


Meanwhile Pete was quite clear this morning - "I don't want anyone asking how long I've got - I don't want to know". I said no-one would be able to answer accurately anyway but we have agreed we won't ask (tbh I never intended to ask!).


This journey (hackneyed expression!) we're on is full of twists and turns as well as ups and downs. Despite this feeling like it should feel like a setback I actually feel quite positive - maybe because it has confirmed all I'd worked out for myself and because it feels like we're doing the right things. On we go....

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Hi Sue - how are you today? I hope Pete is feeling OK. Gary had a stent into his bile duct and felt the benefit straight away, with the jaundice subsiding too. Have you heard whether that is definitely going ahead? Do hope you have both had a decent day and you continue to feel positive. You are both so strong and will be inspiring others to be the same, I am sure. Continuing to think of you and sending you all my positive vibes too!

lots of love

Deb

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Thanks Deb, I really do appreciate your support. Today Pete is very yellow and very tired. I remember an episode when I had obstructive jaundice (with gallstones) many moons ago and I felt very, very, could hardly put one foot in front of the other, weary. The moment the stone popped through it was like someone had flicked a switch and I felt immensely better, so heaven alone knows how it feels to have that and tumour! We haven't heard yet when the procedure is going to be - I tried ringing the specialist nurse a few times today but never any answer. I'll try again tomorrow because this isn't going to get any better till they do the ERCP. It's our 27th wedding anniversary tomorrow and we are aware that we want to go ring shopping but I really don't think Pete has the strength - rings will have to wait!

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Hi Sue. Happy anniversary to you and Pete! Hoping that the stent gets sorted quickly so that things can improve for him. I know what you mean about rings can wait! Yesterday (yep, we did it!) we used her mum's old ring and a borrowed one for me!! Have a good day Sue despite the problems. I hope you get some quality time in the midst of all this on this special day.

Thinking of you both. Hugs,

Paul

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Earlier today I wrote a long reply, didn't save it and my connection failed so I lost it all. I cannot write it all out again, suffice to say today has been a long and hard day with us thinking that Pete would be readmitted. At the end of the day he hasn't been and we hope to stay out of hospital until Monday when he has a gastroscopy, ERCP and stent booked at 1pm. We have to go in at 9am so that he can have more blood tests - as his are quite deranged at the moment.


The hardest part of all was this morning when Pete woke up and told me he wanted it all to be over, he can't carry on any more. We cried and a bit later I wished him happy anniversary and he hugged me and said sorry. A quiet weekend is what we're hoping for.


I know that the jaundice is making him feel dreadful and I do hope he improves as your husband did Deb. The registrar that I spoke to today did say that sometimes a stent cannot be fitted and then I don't know where we are. We will wait and see...

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Hi Sue - so sorry to hear how dreadful Pete feels - I can certainly remember a similar night that Gary and I shared when he had had enough. He often said that the experience of the jaundice was worse than anything he subsequently experienced and he feared its return more than anything else - just goes to show who awful it makes you feel so I can understand how desperately low Pete must be feeling. We had a similar weekend wait for Gary's stent fitting but he did feel better immediately and there was a steady improvement much to his relief. I am so sorry you haven't been able to get out and do your ring shopping - another thing we share. Gary had wanted to get me a ring for my birthday in the March after his diagnosis in the January but we didn't get round to it until the August! Don't rule it out - keep the faith. Think of you all the time and hoping that things improve. Always here for you.

love

Deb

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Gosh Deb, it really does feel like you have travelled this road before me, with all its twists and turns. Thank you so much for 'staying' here and travelling it all again with us newcomers, it is truly appreciated. By yesterday evening Pete did feel a bit better so he didn't feel quite so despondent when he woke this morning feeling much the same as he had yesterday. And so it was, as the day has worn on so he has felt better - we've been for a drive this afternoon, revisiting places we used to take the girls when they were little. Now we're having a quiet evening with Strictly and X-Factor! Dare I say it, it is quite nice to have no visitors and for the phone to be quiet :mrgreen:

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Sue I really feel for you both. You are such a great help and such a strong character on this forum, I hate to see you going through the wringer. I hope they get the stent sorted so that your dear Pete can get some more quality of life.

I, personally, can not bear to look too far ahead any more. I say to my WIFE (!) Andrea, "The future is this afternoon. Then the future is tomorrow morning." It's the only waty I can cope with it. It works for me. Give it a try.

Hugs to you both,

Paul

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Hi Sue - I agree with Paul, if this situation does anything it gives you a whole new perspective on time and really living in the moment. That said, it was always important to Gary to plan things for the (near) future, things he wanted to do - he needed sense of purpose, one that did not revolve around his battle with PC. He became down when PC dominated our daily lives - to not allow it was part of his feeling in control. Some days this can be harder than others, but do look as far ahead as you dare, it will keep the hope alive and that is so important, even if the things you hope for change along the way.

You are both doing amazingly, as are your other halves. Hoping all goes well for Pete tomorrow, Sue.

lots of love

Deb

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Oh yes! Living for today is what we are trying to do. Which today has meant going to the beach with the dogs, discovering lots of wind and getting the kite out. Result: one utterly exhausted Pete, fast asleep on the sofa. He really did too much but he wasn't not going to do it. We have to leave here early tomorrow so it will be early to bed methinks...

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A day well spent! Made me smile, picturing you on a windswept beach trying to tame a kite. Good to be exhausted from too much fun for a change eh?

Love to you both.

Deb

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What a day! At hospital for blood test at 9am, then told to go away till 1pm so came home, Pete went back to bed. Back at 1pm, kept waiting till 2pm, then said goodbye, come back at 4pm. 20 minutes later get a text asking me to go back. Confusion reigns over the clexane and why Pete is on it and when his last dose was. Explain. Transpires that the blood test done that morning omitted the most crucial bottle, the INR or clotting test (so was a complete waste of time!) and the test had to be redone and the result awaited.


By 4pm I was in tears. I was convinced they'd say time had run out and go home and suddenly they were saying quick, get changed, we're going in.


5.30pm the consultant came to see me and the stent had gone in and was draining well and by 6pm they were telling me I could take Pete home - still very tired and a bit woozy, but ok, and very relieved not to have to stay in.


We've come home, he's had a drink and gone straight to bed. I'll wake him later for his pills. I am so glad this day is done. I hope he will feel better soon and that we can get the chemo back on track. Almost certainly not this week - but should be able to restart next week (I think - I hope!)


I think I might need an early night mysef - I feel a bit like I've been through the wringer today. Night night

Sue

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:P hi susi so pleased all went ahead as planned, must be such a relief for both of you?

hope you both have a good nite's sleep, tomorrows another day, onwards and upwards eh!

wishing you both lots of luck, and positive news, continue taking care of each other, love laura xxxx


thanks for your concern deb, bri doing ok, but is tired? keep "looking" at him ! but you do, dont you?. i feel im on a roundabout, goin the wrong way , n want to get off, lol post properly soon, love and thinking of you all laura xx

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Hi Sue

So glad you actually got the stent done, but so frustrated for you for all the messing about first. I understand totally the frustration you must have felt. The NHS machine turns soooo slowly at times and often gets things messed up. When you are on the receiving end, it's terrible.

Thinking of you. Onwards and upwards.

Paul

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Thank you Paul, your thoughts are much appreciated. We have had an awful night, waking every hour it seems with every symptom under the sun relating to the gut - nausea, vomiting, pooing, diarrhoea and the worst of all - hiccups! Now finally Pete is peacefully asleep - hoorah! As you say Laura, onwards and upwards...

Sue

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PCUK Nurse Jeni

Hi Sue,


Sorry to hear of you and Pete's day at the hospital.


Was he previously on warfarin, or is this another forum poster?


If he has only been on clexane, then routine coag tests do not need to be done, although I appreciate that this was pre-stenting, so probably did need an up to date clotting.


However, for future reference, INR is only needed if on warfarin (I am sure being a nurse you know this). The reason why LMWH is used in oncology, is that warfarin interacts with almost every drug you can think of! The injections are much more reliable, and therefore, the coag/clotting does not need to be checked regularly.


Hope the day turns out better.


KR,


Jeni.

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Thanks Jeni. Pete was on warfarin 8 years ago after bilateral DVT and PE but hasn't been for about 7.5years now. I was told that everyone needs an INR within 24 hours of stenting. The oncology consultant had said he'd need one and gave us a form and we got it done that day (last wed) so I mentioned that and they said, no, no good, needs to be within 24hrs for ALL stenting patients. So we waited for the new result. As so often happens in big organisations the left hand does not know what the right hand is doing.


So far today we are having a good day - nice and quiet and restful - about to watch Downton Abbey (ah, bliss...)


Sue

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Hi Sue - so glad that the stent procedure went well and things have finally settled down. Sounds like you have both had a tough 48 hours. I would often be absolutely astounded at how chaotic hospital visits could be and I was so protective of Gary and wanted to start shouting "this is hard enough, he is dying here and you are wasting precious time, get your act together!!!!" - I would often be close to or in tears out of sheer frustration. So exhausting for you both. I do hope you enjoyed Downton (although this week's episode was traumatic so I hope that didn't knock you). Catch up on your rest and hopefully Pete will be feeling fitter and stronger very soon.

Lots of love

Deb

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Thank you, all you wonderful people. I think, maybe, just maybe things are looking up a little. Pete is definitely less yellow and yesterday evening seemed less tired than he has been for ages. Chemo is definitely cancelled again this week and we have to see the consultant again next week before he can restart. So we have a little breather.

Deb - your description of how you felt in hospital was exactly how I was feeling - sooo frustrating!

Love to you all

Sue

xxx

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Hi Sue

So glad to hear that Pete is feeling better. Jaundice is absolutely horrible and he will definitely feel better and better as the levels get lower and lower. I assume they are waiting for a magic number for the jaundice level to get to before they re-start chemo. Enjoy the breather - we are due a few nice days I believe so hopefully you will be able to get that kite out again?!

lots of love

Deb

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