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sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Newly Diagnosed

Postby sandraW » Sat Dec 17, 2016 12:26 pm

Hi Elaine,
We do all understand as we have been, or are going through just what you are going through now.
We always used to say it took us 24 - 48 hours to get over bad news, we used to retreat, lick our wounds then just continue, its all you can do.
My husband Trevor was lucky to get surgery, but 3 months later the cancer was back in his Liver he had 19 months from his op, and on the whole he had 19 good months.
His cancer was in the tail of his Pancreas originally, he had 19 rounds of chemo mainly Folfirinox he tolerated the chemo well, just suffering with tiredness.
We had 5 fabulous months chemo free in the summer of 2014 when we had 2 weeks in Gran Canaria, took our grandson to London and our granddaughters to Disneyland Paris, memories that we would not have had without treatment, I am sure.
Trevor's cancer was a particularly aggressive form and when he could no longer tolerate treatment he passed away reasonably quickly, he was lucky in the respect he didn't loose lots of weight and was only unwell for the last 6 weeks of his life deteriorating a bit more each day until the end.
If your husband is well enough to be offered treatment, which it sounds as though he is, it will depend on how he tolerates the treatment, as to his quality of life, but where there is life, there is always hope and some have and are continuing to live good quality lives whilst continuing with treatment. I hope it all goes well for you both, take care sandrax xx

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

Re: Newly Diagnosed

Postby Elaine123 » Mon Dec 19, 2016 3:54 pm

Hi everyone it has been a roller coaster day. First Pete got a call from the Hospital to say there had been a cancellation and instead of waiting he can see the consultant tomorrow on the outcome MDT. He was really upbeat about this and looking forward to the meeting. A short time after the specialist nurse called to say she had heard he was going tomorrow , she said that the consultant is a very straight talker and spares no details and that he would probably tell Pete he has 3-6 months left so if Pete doesn't want to hear any details he can ask not to be told them. Too late she had already said it and he was devastated as no one had actually came out and said that to him. Now he is questioning if it is worth going through chemo if he only has months left. Can anyone advise me on this meeting so we can be prepared for it. As I said it has been an up and down day for Pete , I couldn't believe the change that came over him.....a hopeless empty look. Hope everyone is doing good today and coping as best they can.

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

Re: Newly Diagnosed

Postby Veema » Mon Dec 19, 2016 8:18 pm

She shouldn't have said that.

Go to the meeting...you are now prepared for the worst case scenario and see what the consultant says. Our oncologist never gave us any timescales at all, it was only when I asked the hospice nurse right at the end did she give any indication and she was miles out anyway.

I think that once mets are discovered, then it's just palliative treatment to keep it at bay for as long as possible. There are many on this forum living a reasonably active life with liver mets...its not unheard of. Having said that, as soon as it spread to my husband's liver, it also spread to the lining of his abdomen and his liver stopped functioning properly and he developed a massive ascites (fluid in the peritoneal space), it was uncomfortable and caused the sepsis at the end.

Hopefully he'll be offered some chemo and that will give you some additional quality time.

Good luck

Vx

Marmalade

Re: Newly Diagnosed

Postby Marmalade » Mon Dec 19, 2016 8:59 pm

Hi Elaine,

What a very ill considered nurse! I am amazed she is in this job she is so crass.

No one can guess what the consultant is going to say because they haven't got the radiology report or the minutes of the MDT.

It is a distressing situation, and there is no easy way to tell someone this news. We don't know this consultant but he/she is not setting out to frighten or upset you or your husband, why would they? They do however have a duty to inform you of the extent of what they have found and what they can or will do next if you want to know... I suggest that if Pete really doesn't want to know you make it clear at the outset and let Pete say he is happy for them to tell you instead. I think someone needs to know if only so that you can explain to Pete once he has come to terms with the shock.

We all have to face the prognosis at some point and there are many on here who have wished that the doctors had been more open with them at the outset! The positives that we look to take away from the post biopsy consultation are that once you know the worst case scenario you can then talk about the possibilities. Sadly, it is usually the oncologist who has to address the issue of life expectancy because most people want to know how long they have got. They will tell you what you have read on here, there are many variables and no one can say for sure but the statistics for people with similar issues to Pete's are that they averagely live XXXX long.

One of the questions the consultant will be able to answer is Pete's is it worth having Chemo? Most think it is worth it because even though PC can't be cured currently, it can be managed in some cases, treatment trials are available for those who are fit enough, want to extend life and are willing to take a chance on a trial drug or procedure and, chemo can be designed to help manage pain and other symptoms and give better quality as well as quantity of life. It can be stopped at any point so there is very little to lose really. He will also know what is available privately if you ask. For those who want to go on there are options!

My husband decided not to have chemo as he was already very ill and he found trips to hospital distressing and exhausting, he was also 83 and had multiple other complex health issues. My thread "Our journey without chemo" is a diary of our story. It's not gory and may help allay some of his/your fears. Not having treatment is a perfectly valid option and is not in any way defeatist.

No two cases are the same but I think you can only tell him that listening to the consultant will not make his situation worse and may possibly make it a little better, or easier to bear. I think in the end Pete will want to know more about what can and can't be done and will want to make sure things are in order for you if he can, but like most chaps he will not want to keep talking about it! He can have some really useful meds to help with his mood whatever decision he makes and you and his GP should encourage him. He does not have to bear his burden without help.

Keep posting as there are those with huge experience of both scenarios on here and will be able to help and support you.

I wish you well and will be thinking of you and praying for you and your family

M xxxx

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

Re: Newly Diagnosed

Postby Elaine123 » Tue Dec 20, 2016 7:24 am

Thank you so much for replies...marmalade I have taken on board what you said and will now go into the meeting today knowing that what the outcome is will help us to understand and manage Petes future care. Thank you
Elaine
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Marmalade

Re: Newly Diagnosed

Postby Marmalade » Tue Dec 20, 2016 6:04 pm

Hi Elaine,

I hope things were not as bad as you were fearing today, that you are ok and that Pete found the consultation bearable.

M xx

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

Re: Newly Diagnosed

Postby Elaine123 » Wed Dec 21, 2016 8:36 am

Good morning Marmalade.

I didn't post last night as there was so much going on in my head that I decided to work through that and then get up today to start down the long twisty road again that has become our life.

My son Craig and I felt we gained a lot of info that we needed to know. From Pete's point of view it was a shambles and a harrowing experience. After the phone call from the specialist nurse yesterday he has retreated into his shell and is unable to get over the stark way she gave him the 3-6 months news. The upshot was by the time we got shown into the consultant he was wound up like a spring and launched right into " I don't want to hear about anything except if there is any treatment you can give me". I think the forceful way he came across took the oncologist by surprise and it then took him quite some time to get back on track.

He then went over the lead up of events up to where we are at today. He said Pete will be placed on a dual therapy of gemcitabine and abraxane and this will start early in the new year as there is still some jaundice in his body. He then went onto tell us that the aim of chemo is to give him extra time and give him a good quality of life to enjoy it. He then stressed that chemo can give him 3-6 months extra but the hope is they can shrink it or keep it stable which will give him longer. We then met the liaison nurse who we can contact at any time. There wasn't any scope to ask questions as Pete just wanted out of there as fast as was possible. He said that he is going to ask that if he gives permission then they can speak further to Craig and I.

The chemo depends on whether Pete's weight loss can be halted and expressed the importance of being in good physical shape to tolerate the treatment. I feel that if the nurse had not pre-empted the doctor giving him the news that it would have been less of a shock yesterday as the oncologist had an excellent manner the way he explained things. I just feel this is the second time that Pete has had to cope with news just being thrust on him without any thought to it.

The initial news was given to him by a Dr coming into his room at 8 am and saying you have pancreatic cancer and mets to your liver therefore it is inoperable. I will speak with you and your family at visiting time ( 2.30pm ). Pete then phoned me with the news and Craig and I went up straight away after an arduous journey in shock and disbelief. I just feel it is so cruel to give anyone that kind of news in such a callous manner.

I am sorry this is so long winded and thank you for listening as I am fully aware that you are working through your own loss and that everyone on here are fighting the same battle. Thank you.
Elaine
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Marmalade

Re: Newly Diagnosed

Postby Marmalade » Wed Dec 21, 2016 6:53 pm

Hi Elaine,

Well done all of you!

Be as long or short winded as you like. Louis was cross with the oncologist too, because he was late and Louis was ill and exhausted. My doctor daughter tells me they get all sorts of reactions and who knows, maybe he tempered his usual brisk manner because he could tell Pete was agitated. I'm so glad you felt you got something out of it.
I think Pete probably did too, he is just coming to terms with things in a different way and at his own speed.

I think it would be really helpful for you to get the GP to put you in touch with the local hospice or palliative care team so that they can give some support to Pete and provide a very experienced ear for him as well as some practical information for you and Craig.

Having said all that, there were times when Louis and I had to be straight with each other, mainly at the beginning, where you are now in fact. I had to tell him once that although I understood his shock, exhaustion, pain and fear it did not give him licence to take it out on me, that my life was not going to be a picnic either! It seemed to work.

I think Pete needs a bit of peace, good pain control and as much normality as possible for a few days. If he is not ready to talk about it then don't.

In the meantime, give yourself a little break too, be kind to yourself, make sure you see your friends and take some exercise, it's important to pace yourself, not take on more than you need to and let others take up the slack. It will be good training for them! You will find that things that were incredibly important at one point are now not important at all and can wait.

Much love to you both,

M xx

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

Re: Newly Diagnos

Postby Elaine123 » Fri Dec 23, 2016 12:06 am

T/C last night to say that the hospital will see Pete on Wed 28th Dec and will be given chemo on the 29th. He is over the moon because at the meeting the other day he was told that the soonest he could start chemo was early Jan 2017. Guess this is us beginning a new phase which may or may not be successful . Everything that happens with this illness seems to involve either a waiting game or uncertainty of the outcome of decisions that are made.
Elaine
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Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: Newly Diagnosed

Postby Justamo » Fri Dec 23, 2016 7:40 am

Morning Elaine, I typed a reply last night at about midnight and this morning it has vanished. It was about Pete gaining weight before his chemo. What worked for my Peter was cream, creons and cheese. Mascarpone ice cream, double cream in with pasta sauces, mashed potatoes, whipped cream with scones, full fat milk with milk powder in it, everything wrapped in pastry; you can really go to town on it. The lovely nurses on our helpline have a leaflet they will send you but it might not arrive in time with Christmas post, so Google 'gain weight for ideas.

I even resorted to Instant Whip - slips down easily and not heavy to eat. Creons help too. Little and often, and you can also get procal powders which I've heard can be added to food but we haven't used them.

Peter deals with his diagnosis by ignoring it. He is talking blithely about playing golf next Summer, and as far as he is concerned PC is an annoyance rather than a terminal illness. He can deal with it any way he likes if it works for him and he's happy.

I you all enjoy Christmas and have a peaceful time.
Love, Mo

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

Re: Newly Diagnosed

Postby Veema » Sat Dec 24, 2016 10:45 am

Right...if you need to get his weight up, you need to ask the GP for the following:

Procal powders...adds calories and protein to anything (except water and juice) without changing taste or texture. What Mo has said about cream and everything is great and will get the calories in and the weight up, but Nige couldn't tolerate the clagginess of rich, creamy stuff.

Scandishakes...a complete nutritional shake, which actually taste reasonable, rather than the fortisip things...add the procal to this and it's hugely calorific.

Have a look online for NIDO milk powder...it's a full fat milk powder that can be added to stuff, unlike marvel or supermarkets own brands which are made with skimmed milk...this is a good alternative if you can't get hold of the procal stuff off the doctor. Some tescos have it apparently, but I could never find it.

I think they should have given you a dietician if they think his weight is a problem...but if you do get a palliative care nurse, they should also be able to put you in contact with a dietician. The trouble lots of PC sufferers find is they actually don't feel like eating at all, which is so frustrating when you know you've got to get the weight up. In the mean time, just try and get him to eat the most unhealthiest food you can think of.

He's lucky that he's getting Abraxane as well as Gemcitibine, together, they have a good track record and there's every chance it will shrink the tumours and keep it at bay.

Good luck with the weight...we've all been there, we know the battle...and try and have a lovely christmas.

Vx

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

Re: Newly Diagnosed

Postby Elaine123 » Mon Dec 26, 2016 10:33 am

Merry Xmas everyone I hope you all had a lovely day as far as you possibly could given all our circumstances.
We knew our usual family Xmas was not possible this year but we went ahead and made all our usual preparations ..the Xmas table and the Xmas dinner and our usual present opening mayhem but it was difficult for everyone . Pete was quite unwell and had to go to bed before dinner I think it was a mixture of seeing the food and having to take part in what used to be the highlight of his year and all the uncertainty of the future.
I am just so happy it is all over and we can concentrate on the next stage of his battle. He has had a difficult week his appetite is practically non existent and he doesn't seem to able to drink as many fluids as he was previously taking. He also is very weak and just sleeps away most of the day. He has the oncology centre this wed and his chemo commences on Thursday but I am fearful he won't be fit enough to take the chemo. Thank you to everyone who has given me advice on how to build up his weight but he is not eating at all so unable to get the all important nourishment into him. He is just so sad looking and although the GP has given him anti depressants they won't kick in for a few weeks yet. He has been so anxious to start chemo and feel as though he is at last fighting back but with his recent weight loss we are just hoping against hope that he can be given it. The chemist has ordered the protein shots for him but due to the holidays we won't collect them until Wednesday. I am hoping them being just a small drink he will be able to take them..
Once again thank you to everyone on this forum and I have now worked my way through most of the comments and peoples records of their own personal journeys and you have all given me hope .
Elaine
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Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: Newly Diagnosed

Postby Justamo » Mon Dec 26, 2016 12:12 pm

Hello Elaine, sorry Christmas was a bit strained.

I did notice with my Peter that his taste changed almost as soon as he had his first symptoms.
Really odd things, like wanting me to buy HP sauce instead of tomato ketchup. He stopped using mustard. He suddenly went completely 'off' salad and raw veg of all kinds. His all time favourite for snacks, smoked mackerel pate, was suddenly shunned. He said lots of things tasted 'funny'. After 40-odd years of cooking for him I just didn't have a clue what to serve for dinner.

Up till a week or so ago his appetite was good but now it's waning again. Maybe when your Pete starts his chemo things will improve. Veema has lots of experience with diets and I would go with her advice if I were you. And if the antidepressants lift his mood a bit then he may feel a bit more like food.

Take care
Love Mo

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

Re: Newly Diagnosed

Postby Veema » Mon Dec 26, 2016 1:22 pm

Nige went off anything that had a vinegary taste, so ketchup, salad cream etc, but he liked rich meaty gravy tastes and ate a lot of liver, casseroles etc that had gravy because things were too dry for him otherwise. He also liked cereal, so lived on frosties, branflakes and things like that...but this was only whilst he had chemo, he ate ok when not having chemo. Think I mentioned on another thread about juicing...get yourself a nutriti ninja or something similar and juice things. Mango, pineapple, banana, spinach and kale is our favourite, with almond milk and a handful of nuts...you can also put a huge dollop of coconut oil (brilliant for alsorts) or peanut butter in there.

But, if he's not wanting to eat, there's not a lot you can do. Towards the end, I just let him do what he wanted and stopped forcing him, but Peter isn't at that stage yet and you need to impress on him that he isn't going to be able to fight this unless he keeps his nutrition up and gets his weight back up...that you understand he feels crap and not wanting to eat, but there's only so much you can do...if he doesn't want to fight it, that's OK and you'll support him...sometimes a few hard truths are what's needed to shock them into doing something. You can't force him to eat, he needs to see for himself that not eating is not going to get him anywhere...maybe them not giving him his chemo this time might be what he needs to get him to understand that.

Good luck with it...I understand the frustration...the supplements might help.

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

Re: Newly Diagnosed

Postby Elaine123 » Tue Dec 27, 2016 10:58 pm

Hi Veema thank you for your reply ....There has been quite a change in Pete today apart from still not eating he has been on the sofa all day just drifting in and out of sleep. He looks so different today , as if he has become frailer overnight....he said he's not in pain . There just seems to be a gradual change all day. He is looking forward to going for his blood tests tomorrow as he starts chemo Thursday and as I said before he cannot wait to get chemo as he said he will then feel as though he is fighting back. The liaison nurse starts back at work tomorrow so I will ring her first thing in the morning and explain the downward turn Pete has taken. I am just so worried tonight and feel quite shocked at everything changing over two days. Can anyone advise me if this evil disease can worsen so rapidly.
Elaine
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