Finding it so hard to recall better times

[boa]

Hi Linda, I hope your appointment with the Matron goes well. I think you will feel much better when you have explained what is troubling you. Catherine

[Linda G]

Hi Didge, how are you. I'm glad your dream was a comfort, mine was too. I had another one a couple of nights after that when I felt he was lying in bed beside me and I felt the weight of his arm over me. It seemed as if he was right there beside me. I have had no more since but hope I do. The football team is Sunderland AFC!!!! hanging on by our fingernails at the minute. Stewart would have been delighted with the 3- 0 win yesterday. I just hope we manage to stay up.

xxxxx

Linda G

[Linda G]

Hi Catherine, how are you? Thanks. I hope it helps. I just feel there are some simple things that could improve the care of someone else in Stewart's position. It made him so unhappy when he was fighting so hard. Some of the care was lacking, to say the least. It made a very difficult situation so much harder than it needed to be. It broke both of our hearts and spirits. Fortunately the wonderful hospice staff were able to restore some calm and dignity.The hospital could learn a lot from hospice staff.

Take Care

Linda G

XXX

[Linda G]

PW, better than Man U ..... Sunderland AFC. Supported them man and boy. I don't know many men who are not crazy about football (or any other sport for that matter). I so hope they manage to stay up, good win yesterday though. Glad to hear you are both okay-ish. I know exactly what you mean. Sometimes how you feel changes from one five minutes to the next doesn't it. I totally feel for you both. My memories of your situation are still very fresh and it take nothing much to evoke them. Hope hubby enjoys his food.

xxxx

[Guest]

Hi Linda,

Sorry to read yet someone else didn't have the care they deserved. Be strong when you go, hold yourself together untill you get home. She will obviously try to defend the said people. I really hope Stewart's lack of care didn't cause too much pain for him ( sorry, didn't know how to word that, but sure you know what I mean ).

What was sad for me was my Dad always had faith and trust in the medical profession. Which he should have done, we all should have that, but it just isn't around anymore. Towards the end, Dad said to me " why don't people care anymore ".

good luck Linda. Will be thinking of you, and Stewart will be with you keeping you strong.

Leila xx

[Linda G]

Hi Fifi, I just had a look on the website. There are some beautiful things. I love the star rings. It's not something I thought about before but I am certainly thinking about it now. Thanks

Linda G

XXX

[Linda G]

Hi again, it caused considerable emotional distress , which is probably worse. Like your Dad Stewart had faith in the medical and nursing staff, but he was let down at the end when he needed the most care and support. I know thing have changed massively in the NHS. I was a registered nurse years ago and "caring" was an integral part of nursing. I went on to be a midwife for 35 years and I would like to think I maintained that caring throughout my career.

I will let you know how I get on.

xxx

[Guest]

Yes, those star rings are very beautiful.

He presents them very respectfully as well. He will also send back the ashes he doesn't use. I wouldn't recommend anyone that I thought was disrespectful in any way. it's too important.

Leila xx

[Guest]

I really am sorry Linda. I don't know how people get jobs, it isn't just a standard job, you have to have care. Without care you shouldn't do it.

You read people's threads on here, Pete's for example, I think he feels he shouldn't be bothering with them, and to wait for them to contact him. I also strongly believe that patients should not be chasing, that someone else should do it for them. My Dad would have been more distraught if he had the conversations I did with people. Sometimes I had to really sob, and plead with people. We had a month wait for an appointment with the Gastrointerologist, I called the secretary and said Dad had stage 4 pamcreatic cancer, and he just didn't have a month to wait, he got an appointment 2 days later.

They need to acknowledge what they did you and Stewart and they need to make sure it doesn't happen to anyone else ever again.

Leila xx

[Guest]

How did you get on Linda?

Leila xx

[Linda G]

Hi Leila,

It was difficult but I managed to get all my points across.

I knew the matron from when I worked there and she also knew Stewart. There was a clerical lady there taking notes (with my agreement), and both the matron and this clerical lady had both lost their fathers to PC!!!!! How weird was that? So I felt they were well able to understand my issues.

I had made some notes and I explained everything to them. They agreed with everything I said - they were shocked by some of them. I did cry a lot (despite taking Diazepam before I went) and both of them got teary too. The matron is going to investigate my issues and speak to the staff involved. She will let me know the outcome in due time.

I did feel I was listened to and they agreed that there are some changes that can be made that would help others in a similar situation. I am not sure yet whether discussing it all will ease my mind but I hope so. It might stop me going over and over it in my head now that I have said it all out loud to someone who can potentially improve things for others. Time will tell.

How are you feeling? Thursday is going to be difficult for you, do you have anything special planned?

Thanks for your concern and support Leila, it's very much appreciated. Take care. I will be thinking of you.

xxxxxx

Linda G

[PCUK Nurse Jeni]

Linda,

Well done for taking the time to do this, and to feed back some of the negative experiences.

Great that you were listened to, and yes, pretty uncanny that there was such a link to PC.

As you say, if this is able to help others - it sounds like the matron is resolving to get some answers for you, and hopefully, feedback points which need vast improvement.

Although doing such things can be painful and emotional, its absolutely crucial to give constructive feedback.

Kind regards,

Jeni.

PC Specialist Nurse,

Support Team.

[Guest]

Hi Linda,

I hope they investigate your 'feedback' seriously, and properly. They let you down, and it is very serious. You put your lives in these people and they broke the level of care.

Do you feel better for telling them what they did? When will they tell you the outcome of their investigation?

I am not so great, but thank you for asking. I miss my Dad very much, might post something to him tomorrow.

Leila xx

[Proud Wife]

Good for you Linda! Although you cried a lot, it's better to let it out than keep it in and the fact that they were teary too, I think means that your got your message home.

Sorry to hijack your thread Linda but just wanted to say to Leila got for it honey. Tomorrow's your day and I think it would be a fitting tribute to post for him. I'd like to join you.

Love to you both Linda and Leila xx

[Linda G]

Hi Jeni and Leila, it was very difficult but it was something I needed to do, for myself as well as Stewart and others like him. One thing she said they could implement as a trust was a policy whereby Creon tablets are left with the patient instead of locking them in a cupboard. Stewart was in about 5 wards at different times. Each time they locked the Creon away. The hot meal would come, he would ask for his Creon and then wait 10 - 20 minutes! by which time the food was cold. To us this was stupid - pts trying to gain/maintain weight should be allowed to keep the Creon with them. Each time we ended up hiding a bottle in his toilet bag so he could get them when he needed them. She is going to contact me by phone when she has completed the investigation. It was also a waste of staff time as well. There were other more serious issues that I don't want to discuss here. I also told her of the good points on the other wards, although I had already sent our thanks to them. It was only this last ward that let us down in a big way when we needed the most care and support. I'm not sure yet whether it has helped me by getting it off my chest but time will tell.

Leila, I know you love your Dad very, very much, he would be so proud of you. You have got through the first year and helped and supported a lot of people in that time. I also know you miss him terrible. My own Dad died 20yrs ago and I still think about him at some time every single day. I think daughters and Dads have a very special relationship! Take care tomorrow and hope you can find some special, precious memories to help you through the day. I will be thinking of you.

xxxx

Linda G

[Linda G]

Hi PW, I hope the messages got through. I agree with you, I think Leila should post a special tribute to her Dad - perhaps on the tribute wall. He sounds like he was a brilliant Dad with a very special daughter.

I hope you and hubby are coping (for want of a better word), you both sound like incredible strong characters, although I bet you don't feel it.

I had my 3yr old step- grandson today. He spoke about Grandad Stew six times, out of the blue each time. He was so lovely. For 3 yrs he understands quite a lot. For a small person he has a lot of responsibility keeping Nana Linda occupied and tear free (almost) for 7 hrs at a time. So like his grandad its unreal.

Take care.

xxxx

Linda G

[Guest]

Hi Linda,

I can't believe they wouldn't let Stewart have the creons, the local hospital Dad was in, would even let Dad keep his own. That is absolutely terrible. I hope they rectify that immediately for future patients.

I remember my Dad, when he was in hospital, he wanted a glass of water with his dinner. He was just sat deflated, I asked him what was wrong, he said they wouldn't let him have any water! I asked a nurse, and she said Dad was on a water restriction, I said he wasn't and if they didn't get him water, I would just get my own. Turns out, they were mixed up with the man in the bed previous to Dad!

I understand the nurses are busy, but it is silly mistakes they are making, and these silly mistakes are serious, and can be very serious.

I hope you are really very proud of yourself for standing up to them like that. It is very brave, and we need people like you.

I am Ok Linda, I did post another tribute on the wall. I put one on last year, and just added to it last week. You are very right, Dad's and Daughter's have a very special relationship. He was a very very special Dad, I hope we really do see them again.

Leila xx

[PCUK Nurse Jeni]

Linda,

Thats brilliant news about the new creon policy - we had hoped this was happening already, since they are not medication!

Shows a lack of understanding about their function, when they have to be taken and how they work, but because of your constructive feedback, something can now be implemented for others like Stewart, and they won't have their enzymes locked away! Just brilliant - what a result!

Well done again Linda.

Jeni,

Pancreatic Cancer Nurse Specialist,

Support Team.

[Linda G]

Hi Leila and Jeni, I do hope they will make it policy that pts keep their own Creons. Heaven knows how long it will take to implement, the wheels of NHS grind very slowly. I will keep you informed. I also think hospital nurses could learn a lot from specialist palliative care nurses. I was told they have an annual education update on palliative care but I'm not sure what that entails or who gives the training- might be worth asking when I gen I get the feedback. Stewart didn't like me to make a fuss but I hope he understands why.

Leila, I will have a look at your tribute. I have to believe we will see them again as it is the only thing that keeps me going. Take care.

Linda G

XX

[Linda G]

Beautiful tribute Leila. And lovely photographs.

xxx

[Guest]

Hi Linda,

How are you? Have you thought anymore about sharing Stewart's story?

Leila xx

[Linda G]

Hi Leila, I'm not doing so good at the minute. I just cry all the time, I miss him so very much. I don't want to do anything, go anywhere or see anyone. I don't think I will submit our story because it is so negative. Throughout his illness it was always one step forward and two back so I can't see it being any help to anyone. How are you getting on with the counselling? Do you think it is helping? I am considering contacting the hospice counsellor tomorrow as I really am struggling at the minute. How are you doing?

Linda G

XXX

[Didge]

Linda just wanted to say I am thinking of you. If you can, try to find tiny things to focus on and cheer you. A TV programme you are looking forward to. Buying yourself a cream cake, any little pleasure you can think of. Things will improve so hang on in there! Xx

[Linda G]

Thanks Didge, It sounds so self pitying but I can find very little that cheers me at the moment. Everything just makes me sad! I will keep hanging on in though. I keep telling myself he would not have wanted this for me and that I need to live this life for both of us.

Linda G

XXX

[Guest]

Hi Linda,

I know it is so very easy to say, but Stewart won't want to see you so sad all the time. He is missing you as well. He just gets to see you, and you don't get to see him.

What kind of man was he? Was he funny? Grumpy? Happy? What would he say to you right now?

Counselling is finished, I only got 6 sessions and I had 7. It helped in the sense I could talk about Dad, that is what I like to do. I need to talk about him. My counsellor wanted me to consider hypnotherapy for all the anger I have for certain people, but if they didn't let us down, I wouldn't be angry. The deserve my anger and it doesn't bother me to have it. It is only directed to those people, it doesn't consume me.

Leila xx