Where now ?

[Dorset44]

Hello Friends ,

Where to start ?

My Husband is one of the lucky ones ? Ha had a Whipples op three years ago. Was doing so well , sailed through chemo and Radiation . Went into remission . Sadly for only about 8 months. Chemo started again . This time it didn't work. The scan showed that the cancer was still returning. The Oncologist said nothing more can be done for him . My reply to that was ' What do we do just give up ', how long are we talking, he said ' Good Question ' End of the year ' ! It was like being hit with a hammer. He is now back with his GP , who I don't think show any compassion at all . He has given him pain killers that don't work!

Some days are better than others , he goes into these ' shaking episodes,very cold ' goes to bed with a heated blanket ? What they are all about we don't know ?

Tomorrow he goes into hospital to have cancer cells removed from his Bladder. We always knew they were there and usually with the scan they blasted them away , but this time it was too much so they have to keep him in overnight.

I don't understand ? How can one Doctor give up on him and yet the other one keep trying to help him?.

My family is tiny to say the least. ? I Have one Brother , who lives in the same house and he is on Kidney dialysis , has a bad heart ... and I can't cope with both of them.

I have a great GP who is keeping a good eye on me. But at times everything just seems to be too much.

Thanks for listening

Diane

[susikus]

Oh Diane, this is such a hard road to travel isn't it? Your husband has done incredibly well to have kept going as long as he has. Would I be right in thinking that you have different GPs? It sounds that way in your post, and if his GP isn't helping him then it would be entirely reasonable to swap GPs. There is no reason that he needs to be in pain - if the painkillers aren't working then he needs stronger painkillers or higher doses. And for the road that you are now on a good GP is worth their weight in gold.

Have you a specialist nurse? A MacMillan or Marie Curie nurse? District Nurses? All of these nurses are people who can help. Your GP surgery can put you in touch. Keep posting and sharing what is happening - I find it so helpful to know that I am not alone in the journey I must travel - I hope you do too

with love

Sue

[DRAD3]

Hi Diane - so very sorry to hear about your husband and how things have turned for you both. I would agree with Sue - now is the time to get assertive with your GP and get him to make sure your husband's pain is under control. You also need to be pushing for some support from whatever community nursing is available in your area (for me and my husband, it was palliative care nurses and district nurses working for the local hospice at home service) - these teams are absolutely invaluable in terms of practical help, emotional support and can help you get the right medication prescribed by the GP (some prescribe themselves which is quicker). I appreciate that you are still receiving treatment through the hospital but these services at home will really help you, especially as you also have your brother to care for. Ask for help, Diane - it is there, as are we (not sure how helpful we can be without a magic wand, but we understand and care).

Sending you love and strength.

Deb

x

[Dorset44]

Thanks Deb and Sue for taking your time to reply to me?

My hubby is in the hospital as I write this? Hopefully he will soon be awake and we can talk. You know men can be so stubborn ? We have been married 43 years and he has always been the same. I have tried so hard to get him to see my GP. His answer to that one is ' mine has always done well by me', I must admit at the start , he took one look at Alan when he had turned yellow and got him into the hospital really fast. When the oncologist gave up on Alan we both went to see Alan's GP ? He is so ' matter of fact ' . When I said I had signed up with the surgery as my Husband's carer he asked ' WHY ' ... I said , I not only have my Husband to care about , I have a Brother who is on Kidney dialysis and has other illnesses , I can't cope with both. He just said ' Oh I didn't know that '!

I guess I am in the middle? I try to stay strong , but it does get hard.

At the start of the diagnosis there were nurses coming to the home , then it seemed everyone decided he was doing ok , so dumped him , that's how it seems to us. We feel as if we have just been left to our own devices. I joined a carer's group and next week I have a Lady coming to see me to make sure that Alan is getting everything he is supposed to, so fingers are crossed that we get some answers. She works for the NHS so should know the ropes !

We don't have any nurses ,only me! Hopefully we will get some help when I see the Lady from the Carer's group , she was a nurse for many years so I am sure she will have some ' clout ' !

I am not going to ramble on and take up everyone's time , I will keep you updated if we can find help.

Thank you for listening , it is good to ' let things out '.

Hugs

Diane

[susikus]

The nurses who were coming could come again if they knew they were needed I expect. And your husband's GP could listen to you, or perhaps you might write him a letter? Good luck and do let us know how you get on.

Hugs to you too, Sue

[DRAD3]

Hi Diane

Firstly just wanted to say never apologise for taking up anyone's time on the forum. This is your space to get everything out, vent every emotion, every fear, every hope - there will always be someone very happy to listen and offer support - I certainly would not have coped with my husband's battle with this cruel disease without PCUK and this forum and I understand how valuable coming on here can be, if only just to get those thoughts out of your head, rather than let them go round and round, driving you crazy. In this difficult and uncertain time, be sure of one thing - you can always find a friend here.

Many of the forum family will agree with me when I say that another thing that is certain is that to get the care and attention your husband deserves you will probably need to find your assertive self and begin to not worry too much about being a nuisance - chase, chase, chase everything you feel you need for your husband and for yourself. I think too many of us worry about that but now is the time to be extremely selfish and look after no.1. I hope the lady from the carer's group can offer you some help - that certainly is a good start.

Do let us know how you get on. Sending you and your husband love and strength.

Deb

x

[susikus]

Diane, how are you now? I hope that you have found some help and some answers. Please do come back and let us know how you are getting on. I've been thinking about you.

love

Sue

xxx

[Aussiemom]

Hello Ladies ,

This is me , I Had to re register, I kept getting that I was unknown !!!! But it really is me ? Aussiemom? That is because we have an Australian Shepherd Furbaby , we brought from Canada when we came back to the UK 5 years ago !! Ok explantations over ....

A lot has happened ? You told me to push and I DID !! ( well with a lot of help )

Backtracking a bit. Tuesday evening I Had to call an out of hours doctor. Alan was in awful pain , the like I Have not seen before. A Doctor came but couldn't help him, said he needed at least Morphine and they are not allowed to carry that in hospital cars. He checked his stomach , it was very swollen, he said he could feel the cancer. The pain was moving upwards and hiccups were becoming an issue , they wouldn't stop. The sickness kept coming , throwing up everything was black ( sorry too much information ) . The Doctor told us to ask ' OUR TEAM ' to organize some Palliative care ? To which I replied, ' WHAT team, we are on our own ' !! He said I must go to Alan's Doctor the next day and tell him that help is needed. I said , ' The Doctor wont see us , he is not easy to talk to ' . However .... the next morning I called the surgery early and asked for an appointment only to be told by the receptionist . ' I am sorry I have nothing' .... I butted right in ( you ladies told me to be strong ) and said 'My Husband needs help, he has to see his Doctor today , I told her that a Doctor had been called out '.... with that she asked ' Will 10.30am be alright ' !! It worked and I was assertive !! Sorry to be writing so much , this is long !!

We arrived at the surgery , the doctor came out to meet us ????!!!! He proceeded to tell us , that he had been in touch with a MacMillian nurse and he would be coming to our home that day ' ! Word had traveled?

He said ' the time has come to control the pain , prescribed Morphine , anti sickness pills ( Alan has a hard time keeping Morphine down). He was the nicest I have ever seen him ? Talk about eating humble pie ? Then ... everything failed ?

The Macmillian nurse didn't show , no word or anything.

Moving along. I had joined an NHS Carer's group and the next day , the Lady who runs it, Kathy was coming in at 9am for a chat.? Unbeknown to me she was in charge of the carer's at the surgery where Alan's Doctor is ? She was horrified to know we had no help. I was a registered carer with them. 'I will go and see them on my way home' !

Well .... what happened next was unreal ? Within 30 minutes of her leaving , The nurse from MacMillian called ,said he would be with us within the hour , The head of the carers called from the Surgery , Alan's Doctor Called and said he was going to come and see Alan. it was like someone had fired a bullet?

Since then .... everyone has rallied around , the District Nurse was here yesterday to take blood etc. The Nurse From MacMIllian was brilliant , sorted out all medications , prescribed more and is coming here again on Tuesday.

Meanwhile ..... Kathy called and asked ' if anything had happened '? I asked ' WHAT DID YOU DO '? Apparently she had a talk with the Lady who is in charge of the surgery carers and asked ' Why is there be no help for these people, what are we going to do about it? The reply she got was , ' we had slipped through the net' .

Kathy sorted everything ! It was a sheer coincidence that we had arranged a meeting fro her to come and see us. But .... boy did she help. I am so grateful to her.

There that is my long long tale , but I am so relieved , I now have a list of phone numbers for everything that I can want ! All it took was the right person ?

Thanks for listening ,

Hugs,

Diane

[ucyocho]

God the way that our poor relatives are dealt with is unbelievable. People should be falling over themselves to help.

They seem quite happy to just hand a death sentence and walk away it makes me so angry and so very sad.

There are a few good people and I am glad you have found them. it will help you to know that you are doing all you can. This will be my biggest regret that there was no fight for anything as it all happenned so swiftly.

Stay in the fight.X

[susikus]

Oh! Welcome back Diane and well, well done you! I am pleased that you are finally getting the support and help that you need. It pays to be assertive, persistent and dogged! How is Alan feeling now? I hope his pain and sickness are better controlled and that he is feeling a lot more comfortable. Hugs to you and well, well done, love Sue xxx

[DRAD3]

Oh Diane - I am literally punching the air with delight - YOU GO GIRL! What a fantastic job you have done. It shouldn't have come to that, but sadly, sometimes it does and so glad that you fought. I do hope that all of this has meant that Alan is feeling more comfortable and that he will continue to get the care he needs and deserves. Do keep us posted, won't you? We will be thinking of you both and sending you our love.

Deb

x

[Aussiemom]

Hello again ,

Thank you for all your replies .. we are now in the position of good help?

Our MacMillian Nurse asked us to see a Doctor at the local Hospice . Today , was a huge step forward? We saw the Doctor , who sat with us for over an hour. She was lovely, Hubby sat drinking the cup of tea we were offered as soon as we stepped in the door.I felt so different? Someone was answering our questions. Alan was given a through check over. The cancer is spreading into his diaphragm area? He gets constant hiccups , feels like he has indigestion all the time. The Doctor has given Alan some new pills to try and curb this a little. She was so good. The Morphine has been increased, we have total help now, the hospice can be called 24/7 there is always someone to help us. The MacMillian nurse is coming to the home again in a week. They (the Doctor and the nurse ) are now in contact with the GP and the line of communication is good. to think a few weeks ago , we had nothing?

Last Tuesday night was scary , Alan went into a diabetic coma,an ambulance took him to Hospital, kept him overnight . A Doctor from the hospital has since called , a diabetic nurse is coming to see Alan. There are still many questions. Alan gets the shakes , and goes very cold. This comes on very fast . We hope that we can soon get some answers to this problem? Is it cancer or diabetic related . We don't know. Alan seems to be getting much weaker , sleeping a lot and losing his fighting spirit.

Alan always jokes and says I am a ' hard carer '!!! ? I could sit down and cry for him but that doesn't help him or me.I am always positive and refuse to let him seem me down.

Together we have to walk the path wherever it takes us. The good days we savour , and cope with the rough ones. BUT .... at least we have help now , to which , I am so grateful for and I know Alan is too.

The oncologist gave him until the end of the year ... Alan is determined to prove him wrong .

Thanks for listening and letting me ramble.

Diane

[DRAD3]

Hi Diane - lovely to hear from you and great to hear how much help and support you are now getting. What a wonderful attitude you have in the face of it all - you are obviously an extremely strong person and have Alan's best interest at the heart of everything you do.

I hope Alan continues to get lots of support - feeling you are not alone and always having someone at the end of the phone makes such a difference doesn't it? Do let us know how things go and I hope the question about what caused the coma/shakes (how frightening for you both) is answered soon.

Sending you lots of love and continued strength.

Deb

x

[susikus]

Diane you are doing so very well. Well done you! Make the most of every minute that you can. None of us know the future. You and Alan have good spirit. Living in the moment is really very important isn't it? We're all here for you, lots of love, Sue, xxx

[PCUK Nurse Jeni]

Hi Diane,

Great to hear that Alan and you now have more help to see you through, and thanks for posting about this, as it may very well help someone in the future.

Something you said in one of your posts about Alan getting the shakes and going cold - have you checked his temperature when he is having these? It could be a sign of a high temperature. This could indicate an infection, especially if he has a stent in.

Hope this is useful for you,

Kind regards,

Jeni.

[Aussiemom]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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.