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Time and Making Plans


Arthur0601
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Hi, I have been reading through this forum with great sadness at all that people are going through.

I'm from the UK but not actually living there, so I hope it is still okay to post here.

 

Our situation is that my friend, S and myself are both ex-pats. He is 65 years old, is a widower and has no children. We've been friends for a long time and I have been his `person` throughout his journey with this disease. 

He was diagnosed in August 2020, when a routine health check for work showed a CA19-9 of 8,000.

He had some rounds of chemo to reduce the CA19-9 so he could have a Whipple. The first chemo, florinofox wasn't` very effective for him, so he was switched to Gemcitibene, which was brutal on him but did reduce the CA19-9 to  about 1,000.

In February this year he had the Whipple and had no apparent problems from it and was out of the hospital in a couple of weeks.

we felt very positive at this time.

He had a relatively healthy period for a few months then started to experience a variety of issues, up and down fever, feelings of bloatedness, chronic fatigue. He is taking an oral chemo drug. 

He also has pre-existing diabetes. Fast forward to October he developed jaundice and cholongitis. Back in the hospital, they replaced a tube they had inserted during the surgery. Meanwhile his blood sugar was off the charts, back into the hospital to stabilize that, and then on December 17th a CT revealed he has a new tumor in his pancreas and the cancer has spread to his liver.

He is continuing with the oral chemo in the hope it will slow thing down, but obviously no further surgery is possible- nor does he want any.

His last CA19-9 was 440,000- but the oncologist told us it is impacted by the high blood sugar and the jaundice, so we don't really have a clear reading, so we don't know if the chemo is working or not. It worries me that if it isn't, and we won't find out until Jan 10th, we aren't actively doing anything to stop/slow the spread.

 

Now he is very uncomfortable much of the time, he feels pain after eating, he has changed food, tried to see what causes the pain etc. He can hardly sleep because sitting up is less painful than lying down, so he dozes in a chair a lot, obviously the diagnosis and the lack of sleep cause him to feel really down. We don't know if these issues are from the cancer? The chemo? or `just` post-surgical issues from having his digestive tract reorganized? Would anyone have any ideas from what I have written here? Or had/witnessed the same ?

 

So, we sort of know where we are ( I think). We have lost mutual friends to this disease. 

We asked the oncologist about time, how much does he have? But the oncologist was rather vague, he said maybe 6 months, and `the median survival rate is 8-11 months`. I think the oncologist just doesn't know, does he? Reading this forum it looks like no one knows really, and I have been so shocked to read posts here and see how quickly things can deteriorate. Obviously there are things S would like to do while he still can- except because of COVID he can't do them- ( Sorry, I don't think I am making very much sense now) .

 

If/when necessary I can take an absence from work and care for him full time in his house ( my children are all grown and independent) but in the meantime he wants us to plan his funeral. I want to be optimistic for him, I want to be able to talk like he will get the `8-11` months, but also be realistic and speak the truth with him, but on some level I am afraid that accepting the reality and not being super upbeat and optimistic all the time will crush any hope he has of getting the longer time frame.

 

If you read all of this, thank you, apologies that it is a little incoherent in places.

I am not really sure what I am asking here, maybe I just need to get it out.

 

I have the deepest respect for everyone going through this themselves or with a loved one, and appreciate everyone's willingness to so openly share what are truly painful thoughts and feelings.

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Arthur I'm sorry to hear of your friend. He has had a lot of treatment and no wonder he is so down. You caring for him too must be so frightening for you. I can understand how you feel how scared to watch him so distressed. The Whipple is a huge op where all the organs are shuffled around. I remember my brother still wearing a drain on his side, from the Whipple for many weeks, even being discharged to come home .A nurse attended him at home. I hope there is a local nurse attending your friend ? To check on how he is going on? How you are both coping. The Dr fixed home visits up. I claimed pip I think its called a type of medical allowance benefit and that paid to hire him a lady carer to attend his home, just to give my brother a fresh face to talk to. She was from an experienced carers company. He enjoyed her chat. She helped with housework and did a bit food prep for him. It was 4 hrs a week but any change of face and help was better than none. 

 

My bro had such a long scar to deal with post whipple and most of the time total felt bloatedness with endless trapped wind. We used a blender to blend up foods and liquids. Esp strawberries blue berries and almond milks for him. Endless searches for protein powders added (dietician can help there ) Also i blended fresh veg made into soups. You didn't mention Creon which is usually taken 2-4 tablets every meal? This was advised for my brother. He helped the bloated tummy. He had some good days and very tired days. As you read the site experiences be sure there are people here who know what you are experiencing. I tried to keep my brothers spirits high. We did talk of his limitation of time on this awful cancer. I cherished our time we had. It is important to let yr friend talk. I did let him unleash on me, but also raised topics to share of our good memories and shared in laughs. It is important to look beyond that awful disease, to talk of that tomorrow. To remember that man rather than that damn disease. I know Covid interrupted my brother's chemo appointments, but at the time in reality  he was delighted it was cancelled. One part of that treatment he was always distressed about even before heading out the door. He eventually some 5 months on got an invite for chemo to re-start but chose to cancel chemo, having quality of even a limited time was better for him he told me, than a lengthy bedridden time. if more time was given to him he wanted peace and the time just spent doing what he could do, than ongoing chemo which exhausted him. He was tired of the treatment plan. 

We took drives out in my car. Often in his dressing gown and slippers  I drove him around his old haunts, his favourite beaches and it took away, (just for a brief time, both our fears). On one second last drs consultation December 2021 - he didn't wish to know "how long" he had. I will say he was fine and able, throughout Dec Jan and Feb ( for another 3 months), his condition didn't deteriorate very much until his actual last week of life- in March. Then it came very quickly for him. With Marie Curie staff and me. He was comfortable. Not in any pain. The staff so very experienced.

Value this precious time. 

Write out your fears or needs on here as so many will see and hopefully reply to you. Everyone needs help with this. 

My bro had 15 months post Whipple. Covid lockdown was an awful time with no pals to visit for my bro or his children and grandchildren. You both maybe need pals and family to help you cope with this. 

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Thank you Skippy, so very much for taking the time to share so much with me. I am sorry for the loss of your brother and I hope you are doing as `okay` as can be expected.

 

My friend and I spoke the other day and started the talk about end of life care and his funeral and other such painful but necessary topics. It was actually `okay` and we will and must go much deeper but we started anyway.

 

I don't know what `Creon` is really, of course I googled it but I have no idea if he is taking it or not, we are not in the UK so any meds will not have the same name anyway, so I have asked him to give me a list of all the meds taking, I actually had one before but a lot changed when he was discharged from the hospital before Xmas. I need to catch up.

 

He has made a list of his top priorities for things to do and people to see. Unfortunately because of COVID going back to the US , may not be possible ( I am British, he is American), but we have started gathering people for dinners and lunches etc while they are still possible.

 

After the holiday ( the New Year holiday here extends to Jan 4th) I need to call various funeral homes and make appointments for consultations to set everything up in advance.

 

I need to go to his city office and make arrangements for home nurses for IF it becomes necessary, I don't want to have to deal with all the bureaucracy in the middle of a medical crisis ( obviously ).

- honestly...is it an IF or is it a WHEN? 

 

That did help to write those things down, thanks for the advice! I know I will be adding to that over the coming weeks.

 

He is tired and down and in some pain still making it difficult to sleep, but he IS able to move about and get out of the house a bit. 

 

Thanks again for letting me talk.

Best wishes to everyone.

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