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Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: Newly Diagnosed

Postby Justamo » Wed Dec 28, 2016 12:03 am

Hi Elaine. Sorry Pete is not eating, it sounds as though he's quite weak. You will have heard people on this forum talking about roller-coasters. PC patients seem to go from good to bad and back again in 24 hours.

Might be wise to encourage Pete to try to eat because if he's really weak then his blood might not be good enough for the chemo to go ahead, and that would be quite a blow for him. See if you can get him to take a Scandishake with Procal in it as Veema suggested.

On Christmas Day Peter told me he was losing his appetite. Today he ate everything in sight and finished the day off ten minutes ago with a huge lump of Stilton cheese with biscuits. His appetite vanishes and then returns with a vengeance - I'm either freezing uneaten meals or rushing off to Tesco to get something he 'fancies'.

I do hope he feels a bit better tomorrow.

Love, Mo

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Newly Diagnosed

Postby Proud Wife » Wed Dec 28, 2016 1:47 am

I hate to disagree with my friends on here but I was told in no uncertain terms not to force hubby to eat or make a big deal about food. It's not that Pete doesn't want to eat, the nature of this beast probsy means he can't eat. To force food on him could make him worse. My hubby became almost skeletal on diagnosis and before chemotherapy but as soon as he was put on steroids and anti sickness medication....metaclopramide from memory, he regained his appetite and eventually 4 stone. I'm so very sorry you are having a tough time at the moment. If you can get Pete to sip on the high cal protein shots regularly that might help, they are very calorific.

No-one can predict how this disease is going to turn, and that is so hard. Try not to overthink things because it will drive you bonkers. You also need to take good care of yourself because it will take its toll. Just remember we are all here for you and understand what you are going through. I'm typing blind on a phone that's not showing me the text I'm writing so I hope this all makes sense.?!!

My lovely Mo, please do join us over on facebook. We have lovely conversations about such random things. It helps escape reality for a very short while.

Elaine sorry to hijack your thread, I am away and it's hard to post anything longer than about 10 words but I hope you find Pete brighter tomorrow. It can happen, you'd be surprised at the twists and turns.

Can I take this opportunity to wish every single person on here a better 2017 than 2016. Somehow it doesn't seem right to wish one another a happy healthy new year when we are all members of the club no-one wants to join.

Much love and prayers for peaceful times ahead xx

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Newly Diagnosed

Postby Veema » Wed Dec 28, 2016 9:12 am

We were told exactly the opposite...that he needed nutrition of some sort, hence the shakes etc. It was only the last 2 weeks where we stopped trying to get him to eat...even then, Nige tried forcing stuff down because he thought he'd get better enough for more chemo.

Elaine, it absolutely can go downhill so quick, but he could also just be having an off couple of days...could have a cold brewing or something else...it also feels so much worse when we can't get in touch with anyone for reassurance with it being the holidays. Try to keep positive...have everything crossed that bloods are okay today for chemo to start tomorrow.

Vx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Newly Diagnosed

Postby Dandygal76 » Wed Dec 28, 2016 11:08 am

Oh Elaine... hopefully the chemo will help as once started it can ease the cancer symptoms but if your read my thread you will also see that dad went to hell and back on Abraxane and so you must come back with any symptoms because I swear my dad had every one of them and we came through the other side to a good quality of life on it. I do get what you say about 'fighting back' mentality.. it is brutally cruel how long PC sufferers are made to wait for treatment when they want the chance to fight back.

I will also go inbetween on the advice re eating. Just find high calorie foods that pack a punch and even a teaspoon will make a difference. I was amazed what my dad survived on but don't waste a spoonful if you can get high calories food... nuts, eggs etc are all good (and drizzle everything wth olive oil). The most important thing though is water and once he knows that by taking the water he will dilute the chemo, flush it out and feel better it gives him a good aim to drink it.. getting water intake will be very helpful around the chemo otherwise the chemo is just sitting there and making him poorly if he does not drink.

Dad only once had a chemo break and he was in an awful state so hopefully you will be surprised today and he has had chemo.

Let us know how you get on and I am sending you both cyber hugs and thinking of you. With the new year brings new hope. x

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Thu Dec 29, 2016 7:05 am

Thank you all so much for your very welcome advice and support I was extremely worried when I wrote the post and again you helped to allay my fears. Yesterday went well and they are starting Petes chemo today. This gave him a real pick me up to the extent that he is taking the shots. He was so tired by the time we had made the round trip to the hospital that when we came home he got straight out my sons car and by the time we got into the house after him he was flat out on the sofa still with his beanie hat and coat and boots on and sound asleep. We just put a throw over him and left him to sleep for three hours. He is always cold just now so the heat did not affect him . They are going to include an anti sickness drug and a steroid with the chemo as you had told me so fingers crossed they should make a difference.
The only one complaint we had yesterday was that the nurse at the clinic repeatedly made a point of telling us that the chemo would only give him a short time and that this cancer is life limiting ....we know that and the more she said it the more agitated Pete was getting , if she continues in that vein at the next clinic I will have to ask to speak to her about it....I am not usually confrontational but I feel that Pete is trying hard to be positive and seems to be overcoming his fears a bit more and doesn't need reminding of what's ahead. Am I wrong ? Or am I just over reacting.?
Roll on today's chemo as he is so eager to start it is giving him hope which up til now he has not had and as I'm sure you will agree the mind is a wonderful thing that can move mountains so we want to encourage that hope.
I am prattling on now but after fearing we were losing Pete last night today the roller coaster is on the up again. I cannot thank you all enough for your support in the midst of your own battle with life right now. Take care
Elaine
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Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Newly Diagnosed

Postby Didge » Thu Dec 29, 2016 9:51 am

Dear Elaine, no you are not over reacting and I would have a word with this nurse or someone in charge before it happens again and not wait! At our hospital it was the other way round. It was a cancer hospital and they said "we take it one day at a time here". Take good news when it comes and don't look too far into the future. Hope all goes well today x

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Newly Diagnosed

Postby Dandygal76 » Thu Dec 29, 2016 10:06 am

I ditto Didge. I always tell people not to look into the abyss - one day at a time is the best mantra. The trial dad is on are always positive towards the future and that really helps him and I would not have someone ramming negatives down their throat. They know the score already and that it is life limiting for nearly everyone and they need the opportunity to process this information in their own way, whether that is fighting back or coming to terms with alternatives. I would also have a quiet word - it does not have to be confrontational to ask her to stop. x

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Newly Diagnosed

Postby Veema » Thu Dec 29, 2016 11:30 am

I agree...she needs to stop saying things like this. You're not stupid, you know the score...she doesn't have to keep going on about it.

Good luck today,

Vx

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

Re: Newly Diagnosed

Postby Ruthus » Thu Dec 29, 2016 1:31 pm

Dear Elaine
I am furious the specialist nurse has repeatedly informed your husband about his life expectancy with or without chemo. She really does sound insensitive and I think individuals should be asked if they want this information before it is given. I know when I was diagnosed in November 2015 my own googling gave me the prognosis of 6-12 months. Unbelievably one of my work colleagues had just been diagnosed with stage 4 PC a couple of months before and he was given 3 months. This was in August 2015. He responded well to Folfirinox and is now on a different chemo. He is still here and working!!

When my Oncologist asked if I wanted a prognosis I said no because I knew what he would tell me. Yes I know statistics are based on science and outcomes but there are a wide range of variables. Each of us are individuals and absolutely no one, not even the most experienced Consultants can tell us how long we have left. I also personally believe that the statistics are now out of date. It takes a good few years for clinical trials to be run and yield their results. Folfirinox and abraxane have only been used more commonly over the past 5 years and I don't think these statistics have been accounted for. (I could be wrong!). I am now 14 months post diagnosis. It's not easy but most of the time I'm living my life to the fullest I can.

Personally I would say I found it psychologically much more difficult after I was first diagnosed. The shock and fear of facing such a terrible diagnosis. I cried regularly for the first few months. However with a combination of medication, support and acceptance I've reached a "new normal"! Life is very different but I still walk and cycle which I'm grateful for.

I hope this gives you and your husband some hope and positivity. Love Ruth xx

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Fri Dec 30, 2016 6:04 pm

Thank you Ruth for your positive reply ...Pete got his first chemo yesterday and was totally shattered all night although he didn't have any adverse effects. He is again wiped out today but he has taken two coffees and one of the Procal shots , so that is a start. I also had a word with our clinical specialist nurse about how Pete reacted to that phone call and she agreed it was totally wrong also the life limiting lecture we got at the clinic. She agreed that from now on there would be more consideration given.
Like you I think most of these statistics they throw out to people are way out of date and do not reflect any progress made in the past five years.
Thank you for sharing your own fight with us and I am delighted you now are living a " new normal " what a brilliant way of putting it. You are so right also that those first months are just a blur of shock stress and really difficult thoughts going round your head.
Like you I think Pete will be able to move past that eventually and find his new normal. He GP has given him an antidepressant which once it takes effect will lift his mood. I wish you all the best for the new year. Take care
Elaine
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Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Newly Diagnosed

Postby Proud Wife » Sat Dec 31, 2016 1:51 pm

I totally agree with your final paragraph Elaine and once the anti sickness and steroids work their magic, hopefully you will be seeing a much better Pete. Remember to take care of yourself too please xx

Marmalade

Re: Newly Diagnosed

Postby Marmalade » Sat Dec 31, 2016 9:18 pm

Dear Elaine,

So sorry you and Pete have had a bit of rough time but its lovely that you have found some support on here and that you have found the confidence to address the crass communications of the medical staff. Sadly many either choose to ignore the diagnosis or it is never explained to them properly so busy bodies like this think they are best equipped to reinforce the grim details. This forum is littered with this sort of incident and there is really no excuse for it.

On to better things. Pete has started his chemo which is no picnic but further than you thought a few weeks back, he has his antidepressants which do really help, he will cope a little better and you will feel better because he does. Yes, normal keeps moving but we adapt and we gradually leave behind the dross and things that don't really matter and use our energy having the very best time we can.

I wish you both a restful weekend, try not to worry about next week or next year, none of us know what it will hold. Chin up, live for today, crack open the champagne and dance tip you drop or whatever pleases you both. What pleases me is a DVD of the Victorian Garden and a cup of red bush tea but each to their own as long as you enjoy it.

Always in my thoughts,

M xx

Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: Newly Diagnosed

Postby Justamo » Sun Jan 01, 2017 12:29 am

Elaine, you sound like a different person in your last post. So positive and together. Planet PC does that to us; it makes a calm rational person turn into a gibbering wreck, but it all changes again in 24 hours. My policy is to enjoy the 'up' times and deal with the bad times as best I can.

And Marmalade dear, much as I hate to lower the tone, I would rather have a large G & T (2 bits of lemon and no ice) with my DVD if that's OK.

Take care
Love Mo

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Wed Jan 04, 2017 4:27 pm

I haven't been on over the past week as it was a busy time , the kids being off work on holiday spent a good bit of their time here which was lovely but tiring. We were at the clinic today to have Petes bloods taken and see the doctor. They said his chemo can go ahead tomorrow. I am surprised as he has really went down this week and has practically slept twenty out of twenty fours every day since his chemo and with not eating he is skeletal now and he just looks so frail and weak. It is so horrible to watch this loving energetic man reduced to how he is by this horrendous disease and all in the space of six weeks. Is there any of you can give me advice as to whether you can come back up again after being so weak and frail. I cannot imagine there is any road back from this or that the chemo can overcome this setback. Thank you all so much for just being here .
Elaine
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Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Wed Jan 04, 2017 4:53 pm

Just as I pressed to submit the post the phone rang and it was the hospital to say that Petes chemo is cancelled tomorrow as his bloods are low. I asked for an explanation but don't really understand it could this be because he is not eating ? To be honest I think the trip to the hospital tomorrow would have totally floored him. Is this a bad sign or does it happen quite frequently to people. I am sorry to ask so many questions but just feel totally useless today and do not want to jump to conclusions based on worry when I really don't know much about the ups and downs of chemo yet.
Elaine
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