Things never forgotten. Comments please

Hi Geoff

I clicked "like " although it dosn't seem quite appropriate, but from my experience I never saw a MacMillan nurse.

The hospital where my husband was had a MacMillan info center, I went there twice.

Just given booklets and leaflets

I felt very let down at a time I needed help.

This site has been more help to me.

Mx

Hi Mx 

I've come to the opinion that all charitable organisations sell themselves on line as Gods gift to humanity. But the basic truth is they employ people we would expect to see in any organisation. The good. The bad. And the ugly.

Love and Light 

Geoff x 

Hi Mx,

That was my experience! All the people who said Macmillan would help and were great!!! It just never happened. I ended going to.the hospice one morning in tears because I just didn't know what to do! They were fantastic. A volunteer sat with me with a cuppa until the nurse manager was free, within 20 mins, who listened and helped! 

Hi Geoff,

The so called specialist nurse at Ric's appointment got annoyed when he was physically sick with nerves, had a go at me for researching treatment etc on the Macmillan web site because she knew best!!! Then proceeded to give vitamin B12 injection to Ric far too fast! Her technique was incorrect and appalling. I did point that out! I refused to see her again!!! They then told him it was ok to drink alcohol with chemo, forgot his antisickness meds for his first treatment and wondered why he was too pissed to turn up!! He had PTSD with alcohol problems which had she read his notes and treated him as an individual she would have known!!! I still want to slap her!!! But we can't all be good at our job I suppose!!! Lol.

Take care and nice to hear from you on here

Love and hugs Alison xxx

I had always thought and heard how wonderful MacMillan nurses were.

Have always donated.

When I really needed help and support nowhere to be seen.

Just leaflets and booklets.

I am sure some people do get support but unfortunately I didn't

Mx

Alison my good friend 

I can add to your story. A specialist nurse ?  REALLY ?  Attended my Anne at home. I told her Anne's urine was the colour of coca cola. She said "Oh I ve never heard of that before." WELL I KNEW it was a sign of kidney failure and the next day called an ambulance. Anne was rushed to hospital on blue lights and two tones. And this woman was working from our local hospice? Later after Anne had passed away  I questioned this so called specialist nurses comments and later got an apology.  Apparently the specialist nurse wrote down my Anne's urine was the colour of coffee which apparently made all  the difference. Perhaps it was her Jamaican accent that caused the so called misunderstanding in communication?  

Love and Light 

Geoff x

Geoff,

No specialist nurse on this planet would save the life of your Anne regardless of her accent or description of her urine. This is the fact and you know it. Anne was very ill. We all try to make sense of something that doesn't make any sense at all. My Danny has gone in only 6 weeks, never been ill before, He was only 50 years old. Looking back, today is a year since he walked into the Hospital, only to never walk out alive again. And we thought that was a good day, everything would get better. 6 weeks later he was dead.

Now, I can go an and on about all the mistakes that have been made, mostly by Doctors as they make decisions. Specialists nurses are administrators,  the connection between a patient and doctors. This is how I saw them and don't really think about them as they really don't matter anymore anyway. They're just the part of the process unfortunately and there is no much they can do about it even if the want to. It took me 2 weeks to finally persuade the one of them to get Danny admitted to the Hospital. The nurses that  really mattered to me and i think about a lot were the ones on the ward. They're heroes and I have nothing but admiration for all they have done and still doing. 

But now Geoff, none if it matters really. They are gone. And I think you should feel  lucky that you had an argument about the colour of your Anne's urine. We were so fortunate to be with out loved ones when they died, we have all the memories of them that so many don't have right now. What would you do if your Anne was ill this year? What  would you do if you were not  able to see her, to be with her? How would you feel if you are not able to have a funeral to say a proper goodbye? 

I often think about that and as much as I'm heartbroken and sad I feel so grateful and strangely happy that if happened at the time when I was able to do everything that I wanted to do to, to be with him until his last breath,  to say a proper goodbye. So many didn't have this chance recently. 

 I'm heartbroken and sad, I miss him enormously, nothing has changed, I love him the same way as I always did and I cherish every single second I spent with him. Everything else is just a white noise and it doesn't matter now. What matters really is to try to live my life somehow and  make him proud. I'm 53 year old but I might be as well 73, this is how I feel inside. So Geoff, don't you think for a second that you have some privilege to feel worse than I do. It is up to us how we go on and when I think about it I always ask Danny what he would like me to do? He has gone but nothing has changed as I said. The closure is impossible and it will never happen, the love continues regardless of whether he is here or not. I love him the same, and that' the reality we all live with. It keeps me going and this is where my strength comes from.  Hope this would be the same with you and Anne. 

Love Dalia xx

Hi Dalia,

Thank you so much for sharing your thoughts, feelings, and experiences.

And I agree entirely.  No specialist nurse on this planet would have saved the life of my Anne regardless of the colour  of her urine or a possible comunication problem which is exactly why I didnt say they could have. 

Love and Light

Geoff x

Hi Dalia

Your post is very honest and very similar to how I was going to respond.

Like Danny my husband walked into hospital with a pain which we thought was an appendix. He was 47 and diagnosed with aggressive terminal Adrenal cancer. We were over loaded with information, things to get in order, family to see, emotions to cope with, our 3 children's hearts to break. The important things in my eyes, were being together, loving and crying together. I have no recollection of faces, names, titles of anyone who passed on our bad news. I remember the kind nurses who held his hand while explaining things to him, giving me a hug, fetching me a cuppa. Nothing else matters. We all did our best.

Corona virus has robbed so many of the things we did without question. Visiting all day and anytime at night, everyone getting to say goodbye, a big funeral and wake afterwards. I cannot imagine not having those memories as hard as it was living through his speedy decline and final passing with me and 2 of our children holding him. Priceless memories.

Take care of yourself

Hi All,

No one could save Ric but his end of life could have been more comfortable and less scarey for him. No one had to communicate so poorly that he felt stupid at times. He was an intelligent man not a child and did not need to be spoken to as such. 

Mistakes do happen, I wonder if his diagnosis was not initially missed he may have lived longer, he may have been happier if a nurse hadn't given him an incorrect diagnosis in a store cupboard because there were no empty rooms and he may have been less unwell with the first chemo if the antiemetics and steroids hadn't been forgotten!! And I certainly would not have been so distressed if the mortuary had not lost his wedding ring!!! 

But do.i make a formal complaint! I haven't yet because I could do with out a patronising reply and would it just fuel the fire? Do I try and forget it? I don't know at the moment, I don't want more misery, I want to move forward. 

Love and hugs Alison xxx