A forum for advanced pancreatic cancer issues

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Aussiemom
Posts: 10
Joined: Fri Oct 19, 2012 3:37 pm

Re: Where now ?

Postby Aussiemom » Mon Nov 19, 2012 3:30 pm

An update ....
Well things have really been in a turmoil here ?
Has anyone experienced Diabetic problems with advancing pancreatic cancer ?
The reason I ask ? The first episode , a couple of weeks ago, One evening about 8pm. Alan for no reason it seemed went into a coma? He had checked his blood around the usual 5pm time. All was fine? ( for him, that is , it often goes up and down ) but it wasn't low.
I had to call an ambulance and they brought him out of it. Took him to hospital. They kept him overnight.
Last week , much more drastic ? Alan took our dog for a short walk , and I mean short, just around the roads. She is old and doesn't go far now. He said he wanted to go , he felt fine?
I thought he was gone a long time and decided to go look for him.I found him face down in the road. Called an ambulance,they arrived. He was cut up about the head and face.
The hospital kept him overnight again .
Then I Heard the whole story ? That was th 2nd fall?
He had felt odd whilst walking , leant against a wall then fell down , a man saw him from an office. Took him inside , realized it was a diabetic problem , gave him some chocolate biscuits. Stubborn Alan wouldn't let him call me and said ' I will be fine ' . The man was concerned when he watched Alan start stumbling. He had to lock his office first and by that time Alan had disappeared. I met the man the next morning and he was so worried about him , but Alan was stubborn and ' didn't want to worry me ' !! If only he had called ?
My Question leading up to all this is ? Does the cancer affect the insulin? I lost a friend to cancer and she too had problems with the diabetes. She had cancer throughout her body , but it was the diabetes that took her into hospital.
With all our ' help ' now in place , we called the doctor at the Hospice and she saw us the next day. She immediately got in touch with the Diabetic nurse. She now calls every 3rd Day .
Things are not going well. The Macmillan nurse comes in on Wednesday. The pain is a lot better , but still hard to control .Alan has now been put on steroids, not sure what they are for ? We still have lots of help and I am so grateful for that. It is hard to believe that we were coping on our own.
I think with the weight loss and the non eating , it is throwing the insulin all over the place. .... life is a struggle for Al at the moment, but we will stay positive. He knows that I am a ' watchful ' eye over him ... I know , we fuss like Mother Hens , but I know he would do the same for me.
Thanks for listening.
Diane

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Where now ?

Postby DRAD3 » Mon Nov 19, 2012 8:01 pm

Oh Diane - this sounds so worrying for you and I can understand that you want to fuss over Alan and not want him out of your sight - I was the same! Sorry I can't help about the diabetes info - I do hope someone else can - or perhaps you could contact the support team?
Sending you love and strength
Deb
xx

yorkypaul
Posts: 136
Joined: Tue Sep 11, 2012 12:23 am

Re: Where now ?

Postby yorkypaul » Tue Nov 20, 2012 9:11 am

Hi Diane. Have been thinking about you and Alan during the night. I really hope there is more comfort for him and a little better news for you both today. Keep talking to your forum friends, for we understand totally what you are going through.
Love and hugs,
Paul x

susikus
Posts: 188
Joined: Wed Sep 05, 2012 11:01 am

Re: Where now ?

Postby susikus » Tue Nov 20, 2012 11:14 am

Hugs Diane, sounds like it has been a very worrying time for you. I am guessing that Alan was already diabetic, reading between the lines of what you said. PC can itself cause diabetes and if already diabetic can cause havoc with control. So all Alan's symptoms do 'fit' together. You both need some expert help with the diabetes - is the nurse a specialist nurse? To be honest I would not be at all worried about trying to keep his sugars down - he isn't going to get long term side effects - and far more worrying is the immediate prospect of going 'hypo' (too low). He may need a lot less insulin. I am not the right person to be giving you information or advice (tempting though that is as diabetes is what I specialise in) but I can tell you that you need some good quality help - ask for it, and keep asking till you get it. A lot of 'ordinary' doctors and nurses don't understand diabetes that well - I certainly didn't - so ask for specialist help. Good luck and keep us posted. Big hugs for you, love Sue, xxx

Aussiemom
Posts: 10
Joined: Fri Oct 19, 2012 3:37 pm

Re: Where now ?

Postby Aussiemom » Tue Nov 20, 2012 8:56 pm

Hello Ladies,
Me again, thank you for all your thoughtful and comforting words. I do have a little update? Firstly regarding Alan and diabetes. until he had his Whipples operation he wasn't a diabetic. He knew nothing about diabetes at all. Before he left the hospital he was told he was a diabetic . Not much information was given to him.
He saw a Diabetic Doctor who helped him a lot plus a Lady named Pat who worked with the Doctor at the Diabetic clinic.
Things went along on an even keel ,all through Kemo and radiation . He coped well. The diabetic nurse Pat called every week. As the time passed she seemed to think that Alan could cope alright and he had 6 monthly meetings with the Doctor.
Until all this happened , Alan said he didn't really take the diabetes seriously. He had his eyes and feet checked , but like everything else , went along with his daily insulin writing down every check. Oh yes , he had the odd hypo , but he always had Lucozade on hand and tablets. Never .... did anything like this happen.
We saw the Doctor at the Hospice , she said she would call someone to get in touch with Al . The phone rang , there was the friendly voice of his original nurse Pat again. She now calls three times a week.
I am convinced that with the weight loss Alan now has ,that is hasn't helped. He is not the same person was originally diagnosed. His body mass is a lot less. He doesn't want food , everything about his routine has changed.
Coping with the cancer has been hard , but this on top of it all seems to just make things 'pile up'.
I wont let him go outside the door if his blood sugars are low.
This has been such a shock, hard to take in.
Tomorrow the Macmillan nurse is coming in to visit. Alan has great faith in him,
the pain control is not as good as it could be I am sure of that but he is the person who can sort it out. The Morphine has been upped, but still the pain is there. I know it is hard for Al but he never complains.
He says he has problems swallowing now ,think that is all to do with the digestion. He knows the cancer has spread to the diaphragm area.( that is the best information we can get at the moment ) .
I am still very relieved that we got help and for sure now , I will not hesitate now to phone anyone we need.
To think we coped so long without hep at all ? It makes me wonder how many people are in the position that we were?
We still have no idea what is ahead ... rephrasing that, we do , but don't think about it. Alan is determined to be here next year. I don't want to even think about Christmas at the moment. I don't think he realizes how downhill he has gone in the last few weeks.
Sorry Ladies, I am rambling here ...didn't mean to.
I Still have Alan with me and that is the main thing. I am doing well I think? I walk the dog more now .. that is good for my health. Always ' one day at a time ' .

My Brother is still a trial? At least with his kidney dialysis he is out of the house for three days a week. He is so full of himself he isn't interested in Alan and how he is doing. I feel a bit like ' piggy in the middle ' * Grin * . I Have to keep my humor up! I have two patients on my hands ... but can only cope with one !!
Wish I had family, but I haven't so I am up for adoption !!
Thanks for listening Ladies. Glad to be able to vent a little !

Hugs
Diane

PCUK Nurse Dianne
Posts: 284
Joined: Tue Aug 14, 2012 3:29 pm

Re: Where now ?

Postby PCUK Nurse Dianne » Wed Nov 21, 2012 8:54 am

Goodmorning Diane,

Thank you for your posts, I will email you directly with some answers to your questions about diabetic ketoacidosis - this is a bit too long to put as a thread on the forum.

For any other users reading this thread the support line is available for you, both Jeni and myself are experienced nurses and our role is to support you with accurate and up to date information, please do not hesitate to contact us. If you phone or email us we aim to return your call/email within 24 hours, however you will usually find that we respond the same day, unless we happen to be at a PCUK event ie fundraising, awareness event.

support line: support@pancreaticcancer.org.uk
phone: 020 35357099

Best wishes,

Dianne
Support & Information nurse

Aussiemom
Posts: 10
Joined: Fri Oct 19, 2012 3:37 pm

Re: Where now ?

Postby Aussiemom » Mon Dec 17, 2012 6:02 pm

Hello Folks ,
Here is an update from me ,sad to say it is not good?
We are now in the hands of the Macmillan Nurse and a Doctor from the local hospice.
Alan is going downhill and it is hard to watch.
I am not going to complain as I do realize that I am one of many in this position
We have been asked all he relevant questions about resuscitating and where Alan wants to be in his last days.
I write these next few lines with trepidation , thinking that people will think bad of me?
Alan is going into the hospice where he will get 24/7 care and everything will be made comfortable for him. I have no nursing experience and am not good at coping with medical stuff. I have no family and no help , I would be so frightened that something would happen that I couldn't handle. We were offered nurse caring and a hospital bed brought into the house , yes that would be a great help , but if Alan passed at home , the house would never be the same ? My last memories of him would not be good ones and this for me would be so hard.
I guess everyone handles death in their own way , but Alan is in total agreement with my decision. The Hospice is close by , I can be there everyday.
I know that many people have hard decisions to make and I know this one is hard , but thinking ahead has helped us both.
I have no idea how long Alan has , he is getting weaker daily
I saw my GP this morning and the Macmillan nurse had been in for his meeting with the Doctors so he was totally aware of what is ahead. He is such a kind caring man and offered any help he could give . ' I know this doesn't help you , but I will be thinking of you both ' he kindly said as I left his office.
It does me good to write everything down in this forum . I just hope that others can read my words and find some help when needed.
I have met with the care team at the practice , we have even all been out for an evening for a Christmas dinner! Getting out for a couple of hours was great. A Neighbor looked in on Alan
When I will be writing my last words on this site I don't know, but to be sure it is quite close I fear.
This has been a long hard road to go , but we have to be thankful for all the Doctors and nurses who have given Alan three years that we never thought he would get.

Thanks for listening.

Hugs
Diane

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: Where now ?

Postby laura » Mon Dec 17, 2012 10:07 pm

hi there diane, so sorry to read your post, what a truly difficult time you have been having.
how lovely that you have your hospice close by, and that you have both been able to choose what you would like at the end.
you are so strong and brave, i think, the thought of having to talk to brian about this, should the need arrive, would be quite daunting.
i dont even have any plans in place for myself!! daft i guess.
i hope your beloved hubby is well cared for, out of pain and peaceful
love, hugs and strength, laura xxx

susikus
Posts: 188
Joined: Wed Sep 05, 2012 11:01 am

Re: Where now ?

Postby susikus » Tue Dec 18, 2012 6:19 pm

Please don't think that anyone will think badly of you Diane. No-one will. You and Alan must do what is right for you and you have made the best decision. Hospices are wonderful places and you will both feel more relaxed. If I may I would like to share a little of how I feel. I nursed my father at home three years ago and was very glad to do so. He died at home in his own bed, very peacefully, and I felt happy that we had done all we could for him. When Pete became ill our daughter said 'they won't take him anywhere will they?' and so Pete and I decided he would stay at home. But he was relatively well and we were not at the point of making decisions, though a hospital bed at home in our living room was mentioned. Then he became ill quite suddenly and we went into hospital. To an oncology ward. The feeling of relief when we got there was immediate and immense - we were in the right place and the staff were just lovely, made us both feel safe. In less than 24 hours Pete died - we look back now and say that he did everything in life quietly, calmly and efficiently, and he died in the same way! I have to say I am so glad now that he didn't die at home. I can remember all the happy times we had here. So feel good that you have made the right decision for you Diane! My thoughts are with you. I hope you have a peaceful Christmas together, lots of love, Sue, xxx

PCUK Nurse Jeni
Posts: 1063
Joined: Mon Jun 14, 2010 1:30 pm

Re: Where now ?

Postby PCUK Nurse Jeni » Wed Dec 19, 2012 9:50 am

Hi Diane,

Thank you for posting your update. Really agree with Sue - no one will think badly of you. Some of the things you mention like the house not being the same again, are very valid and real concerns, and it is good that you want to have happy memories of Alan in your home, and not a place where he was sick. It is so good that the hospice is nearby - as Sue said, these are amazing and peaceful places and they really do know how to look after those at the end of their lives. While Alan will be looked after physically and practically by the staff there, you will be able to invest in him emotionally by being there for him etc....This will make it easier knowing that you do not have to "worry" about the medical side.

I hope it is a really positive experience for Alan and also for you Diane.
Kind regards,

Jeni.