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We saw the oncologist again and all is set for first chemo on Friday. We learnt today that the pancreatic tumour is 5cm in diameter. He is going to start clexane injections daily to prevent blood clots (he has a history of DVT and PE after a major car accident 8 years ago) and also iron tablets as his Haemoglobin level is falling steadily. I also learnt that his CA19-9 reading is 233 so I was just googling it. Not sure what to make of that. Discussed his 'performance status' and the consultant indicated that she does think he is only just fit enough for chemo - she also said that only 1 in 5 patients will get a good response from it. All felt a bit downbeat, though I daresay realistic. We go for our training session tomorrow.

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hello there sue, so sorry that today didnt bring the best of news for you both, its regretful sometimes that we are given "the statistics" cos its hard to focus on the small number of successes, youve got to try and remain as positive as you can, believe me i know its hard,

we too were given those stats, and here we are 2yrs and 7 months down the road.

i truly, truly hope pete is also going to be one of the lucky ones, no reason why he shouldnt be, is there?

chin up love, one foot in front of the other, n keep going.

thinking of you both, take care, be brave, love laura xxx

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It is hard isn't it? We are reasonably OK with it all I think. The stats don't look good but we could get lucky and Pete could do really well as Bri has done. Friends of mine are all convinced that starting chemo on my birthday is a sign of good things to come. I do hope so. Because we have been through the 'unable to eat' and vomiting scenarios (and seem to be out the other side) life does already feel better and I am very hopeful that the chemo will shrink the tumour, even if only a little bit. To be able to coontinue as we are would be just fine by me! One day at a time - one thing this disease does teach you is that you just cannot predict the future. Onwards and upwards...

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Hi Sue

Do not be distracted to much by the stats - my husband's cancer marker was 12,000 at one point - did not have a clue what that meant at the time and we certainly did not see anything different (it seemed to be business as usual) so we continued on just concentrating on what needed to be done each day and keeping him as healthy as possible. After my husband's first bout of chemo, the tumour had shrunk so keep that in mind, Sue, and keep positive. They have to tell you the negative as well as the positive because you have to have informed consent to treatment but keep your mind on the positives and take each day as it comes. Everything crossed for you. Lots of love

Deb

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PCUK Nurse Dianne

Hi Sue,


I hope the chemotherapy session went well today for both Pete and yourself, and that you may have met some other people who will befriend you and help you through the process. We hear of many people who build up great friendships through meetings in Oncology, as Laura said it is often a very positive and friendly place to be.


I note your comment on the Ca19-9, and this is so variable with everyone, to be honest it does not matter how high the result is. This tumour marker will be monitored during the chemotherapy, with the aim that it will begin to decrease as the chemotherapy process goes on. You have every right to be positive, no two patients are alike. We have some great stories (in Real Life Stories -http://www.pancreaticcancer.org.uk/information-and-support/real-life-stories) of people who have made great recoveries and have gone on to maintain as normal as possible life with some returning to work, working in the community, and some taking part in marathon's and other sporting events even after they have been told of their own poor prognosis.


Hope this is helpful, and thinking of you on your birthday. Happy birthday.


Best wishes,


Dianne

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Well I had a lovely birthday, thank you for all your good wishes. Lovely cards and presents and a trip to town to look at eternity rings (not bought anything yet, just looked). Chemo went really well although the unit is really busy and always runs late apparently - only a 1.5hour wait yesterday! Week after next Pete has an appointment for a PICC line and we can use it to take the blood for blood tests :P


We have chemo and consultant appointments booked until next January. The nurse was delightful and we had to fill in a loooong questionnaire - by the time we'd finished discussing it the chemo was done - it all seemed very quick.


By comparison the night last night was verrrryyy loooong. Pete was in pain, nauseous, retching. I gave him oramorph and extra anti-emetics and finally, finally after about 5am he went to sleep. He'd had a lot of pain the night before too so it might not all have been the chemo. A quiet day is called for today methinks...

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Our weekend has been full of ups and downs. When the pain, nausea and tiredness hits it is absolute, nothing else can happen. As Jools said our best time was early afternoon yesterday - we even managed to leave the house for an hour - but the evening was awful again and we dosed Pete up and he went to sleep and is still asleep now. I've had a bad night - hardly slept at all - worrying about Pete and our daughters and what lies ahead and feeling very alone. On the surface I am coping admirably - inside I am like jelly, wobbling all over the place. Am going to ring the MacMillan nurse now.

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Thank you Nicola, I phoned the MacMillan nurse and she came to visit for quite a long time this afternoon and was very helpful. She said Pete's symptoms after the last chemo were unacceptable and gave me a plan to prevent it next time. Also realised I could have called someone over the weekend - because I'm a nurse I tend to soldier on - and next weekend she is organising for someone to call me to find out how things are. So that feels better, now I'd like some sleep tonight.....

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Hi Sue - so glad the chemo went well, despite the wait (although that was good in my experience!) Your window of feeling good is exactly as I remember with my husband. Mornings were extremely slow - he rarely felt ready to start the day before Noon, then we always did whatever we needed or wanted to do after lunch and once tea was eaten, the discomfort and tiredness would set back in and the evenings and nights were the worst. It did seem to follow this pattern and we soon settled into a new routine which was good in so far as it was easier to spot the abnormal or new things we needed to mention or to react to. I can remember my own tiredness and I have said before I think that it reminded me of when I had my baby daughter and how you seem to just run on pure adrenaline - I don't know how I did it, looking back, but I did. You are doing great - I hope that the pain is managed soon and that Pete finds the right combination of meds to keep any side effects to a minimum. So glad the Macmillan nurse is on hand to advise you and give you some support - as always we are here for you too as a place to let out all of those worries - we can't take them away, but we can offer understanding and a shoulder. Take care Sue.

love

Deb

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Hi Sue. I do hope that Pete has a better night tonight. My fiance had a rough night on Saturday (when I arrived) but had a much better one last night - slept through with hardly any vomiting. I drove back this afternoon only to find that she is vomiting again straight after eating. District nurse coming Wednesday now and Macmillan ringing her tomorrow. It's a real rollercoater isn't it? Still 10 days till the oncologist appointment for us. Pete has a real rock with you by his side. Stay strong (easy to say, I know) I am sending you my thoughts and prayers.

Paul

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Thank you Deb and Paul, your words are much appreciated. It is so comforting to know that others have experienced or are experiencing what we are living with right now. Yesterday was a better day, symptom-wise, all round and we both slept all last night.


Sadly I had to take one of our cats to the vet - he asked if we wanted her put to sleep (no not yet, investigate first and see how things go, awaiting test results today).


We are learning a new pattern and I think I will try to do 'jobs' in the morning and leave the afternoon to spend some good time with Pete. Just little things mean so much - he hadn't been well enough to watch Downton Abbey on Sunday when it was broadcast for example - so we recorded it and yesterday at lunchtime we sat and watched it together, holding hands. That felt so good. I hope today we will be well enough to meet with old friends - who also are coping with cancer and chemo - this depends on all four of us feeling up to it tho' so it can be tricky! And tomorrow my sister - who I have not seen for nearly 2 years - is coming to visit :P


Off to walk the dogs now - they are my constant companions and furry lovable friends - 2 large and bouncy labradoodles. Love to you all, Sue

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Hi Sue

So lovely to hear you both had a good day and a good sleep - Thank goodness for Downton eh - I think we all relate to the characters - strength in the face of adversity. Made me smile to think of you and Pete enjoying watching it in your afternoons together - simple things that suddenly become everything.

So sorry to hear about your cat - I broke down when I discovered one of our guinea pigs had passed away a few weeks ago - another loss that just tipped me over (easily done!) I hope the vet can help her, Sue. Our little furry friends do give us such comfort don't they? Enjoy your visit from your sister - how wonderful to see her again after so long.

Take care Sue.

Much love

Deb

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Thanks Deb, turns out the cat is thyrotoxic and the options are pills, surgery or put to sleep. I am collecting pills this morning and we will try to get them in but, knowing her, it will be difficult and I think we will opt for surgery. Being put to sleep is out of the question for us when there is so much else we can do. She is 15 btw.


Pete had his best day post chemo - even cooked supper! And we have spoken to chemo nurse and GP and have a plan in place to try to prevent the same awfulness happening again this week. But last night Pete said even if it was as bad he would cope better for knowing it would improve by this much in a few days - ie the thought of the good would get him through the bad. Fingers crossed it won't be as bad...

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Oh Sue, I just had the most wonderful memory come to my mind when you talked about Pete preparing the tea. I can remember the very same thing, a few days post chemo, coming home and finding Gary in the kitchen preparing a curry (his speciality) - as I walked in, my heart swelled with happiness. He felt really well and had the same attitude as Pete - I can cope with the rubbish days as long as I know I will get a few good ones and by God, I will make the most of those. Wonderful picture in my mind - good memories. So pleased for you both - like I said before, small things do become everything.

Fingers crossed for your little (old) lady - do hope the pills work and she is having her better days too.

Hope you are taking care of yourself, Sue.

lots of love

Deb

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Thanks Deb. The ups and downs continue. Pills are getting into cat via a cunning and tiny cat treat and philadelphia cheese sandwich! I think we will opt for the op and arrange it next week. Pete had a more tired day yesterday and is jaundiced. I suspected it earlier this week - thought his skin looked a little more sallow, then wed pm I noticed the whites of his eyes were a bit yellow and yesterday he said his urine was dark orange. I mentioned my suspicion to the GP on Tuesday (I have to say I have a lovely GP, who rings me twice a week to find out how Pete is and how I am and wants to know if there are any changes). His bilirubin levels at last Thursday's blood test were at the upper limit of normal so she wasn't worried - it will be interesting to see what yesterday's result is. We go for chemo this afternoon and we certainly won't put it off for jaundice. New plan with new pills this afternoon, hopefully we will have a better time than last week...

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Hi Sue. I hope all goes well with the chemo this afternoon and that next week is better for you both. Well done for getting the meds into you cat! I always struggle with that one - unlike the dogs who will just scoff anything without thinking about it!I am so glad that you have a good GP. It can make all the difference if the wheel is to turn smoothly.

Sending love and best wishes to you both. You are a wonderful rock for Pete.

Hugs,

Paul

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Hi Sue

How did it go today? How is the jaundice - I assume they will check levels and perhaps want to check out if there is a blockage and/or do liver function test? Do keep us posted while we keep everything crossed for you both.

love

Deb

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Well, dare I say it? So far so good! We have continued the 4 times a day maxalon as usual and added in 2 ondansetron an hour before chemo began and another just now. So far no nausea at all (tho' it is early days yet!). Pete looks less jaundiced today than he did yesterday. I took the blood yesterday and the bilirubin levels are up to 50something (was 20 last week) so the dr had already signed the chart for him to have a reduced dose of chemo - 1400mg instead of 1800mg (this may also be helping with the reduced side-effects).


We have a consultant appt next wednesday so the nurse asked me to do a blood test on tuesday so that they could see whether it was improving or worsening. Pete did have increased pain this morning and a sort of feeling of dread - I really think he was dreading the chemo and trying not to let on. This time last week he was already retching, tonight he's happily watching mastermind (and he's eaten). Fingers crossed we have a good night because I must admit I felt a bit sick myself last night. One day at a time, I keep telling myself that. Thanks for asking Deb - you are a star to be still here, encouraging us and helping us, thank you.

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Hi Sue. So glad to hear that Pete is feeling better than last time. Please make sure that you are looking after yourself too.It's all too easy to skimp on things for ourselves while we worry about our loved one. I know, I'm guilty of it most of the time myself.

Tell Pete I hope he enjoys Mastermind! I'm usually lucky if I get a couple of questions right in the whole programme! Hope tomorrow is an even better day for you and that you have a good night.

Hugs,

Paul

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Thank you Paul, and I am happy to report that we have both slept all night - no nausea, no vomiting and pain is well controlled with usual tablets. Hoorah! I have MacMillan weekend service calling today and am going to be delighted to tell them we don't need them! It feels lovely to be able to tell you a bit of good news and we must savour each good day. It feels so much better because we expected it to be worse if you see what I mean! One day at a time.....

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Hi Sue

So glad that Pete's jaundice looks better and that you have had another good day. It is understandable this feeling of dread - Gary was the same and, like Pete, kept it to himself but, like you two, we were together for 27 years - words not needed! I guess you feel the same - I had constant nausea the whole time - worry, but what can you do, not worry? - easier said than done! You are both doing brilliantly - keep positive.

Deb

xxx

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