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Dorset44
Posts: 4
Joined: Mon Sep 13, 2010 1:56 pm

Where now ?

Postby Dorset44 » Thu Oct 11, 2012 11:50 am

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

Re: Where now ?

Postby susikus » Thu Oct 11, 2012 3:57 pm

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

Re: Where now ?

Postby DRAD3 » Thu Oct 11, 2012 7:57 pm

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
Posts: 4
Joined: Mon Sep 13, 2010 1:56 pm

Re: Where now ?

Postby Dorset44 » Fri Oct 12, 2012 6:10 pm

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

Re: Where now ?

Postby susikus » Fri Oct 12, 2012 7:59 pm

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

Re: Where now ?

Postby DRAD3 » Fri Oct 12, 2012 9:21 pm

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

Re: Where now ?

Postby susikus » Thu Oct 18, 2012 8:34 am

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

Re: Where now ?

Postby Aussiemom » Sat Oct 20, 2012 10:56 am

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
Posts: 9
Joined: Mon Sep 17, 2012 2:42 pm

Re: Where now ?

Postby ucyocho » Sat Oct 20, 2012 12:45 pm

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

Re: Where now ?

Postby susikus » Sat Oct 20, 2012 5:55 pm

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

Re: Where now ?

Postby DRAD3 » Sun Oct 21, 2012 2:12 pm

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

Re: Where now ?

Postby Aussiemom » Wed Nov 07, 2012 7:42 pm

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

Re: Where now ?

Postby DRAD3 » Wed Nov 07, 2012 8:47 pm

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

Re: Where now ?

Postby susikus » Thu Nov 08, 2012 9:43 am

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
Posts: 1087
Joined: Mon Jun 14, 2010 1:30 pm

Re: Where now ?

Postby PCUK Nurse Jeni » Mon Nov 12, 2012 3:41 pm

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.