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I just wish I hadn't read it. Options
Paula-C
#1 Posted : Sunday, June 20, 2010 8:43:55 PM Quote
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I'm sorry to post this and no one needs to think that they have to reply, I just need to talk, express what I feel/think, I can't do this with my family it is too upsetting. If I start to talk to someone face to face I will be in floods of tears.

My mum was diagnosed with skin cancer in October 1990, she had a mole on her chest. She ended up being in hospital to have it removed and we were told that it had all gone. A few months later I think it was around Feb 1991 she found a lump in her breast, her doctor found another one and when she was examined by the consultant she found another. She told the consultant that she was feeling unwell, had a pain in her side and she kept feeling sick. She went into hospital and we were told that the cancer had spread to her liver and she had anything from a week to a year to live. She left the hospital the following Tuesday, called round to see me on her way home walking about but in not alot of pain, saying that when she was better she would start to go out more and enjoy herself (she hadn't been told it was terminal). I went to see the following day she was walking about and again didn't seem to be in much pain. I saw her again two days later and she was sick while I was there but she was happy, walking about and not in too much pain.

The following morning my father phoned to say that she had had a bad night, she had been sick alot and he had called the GP. As far as I know it wasn't her GP that came because it was Saturday, my father phoned after he had gone, early afternoon and said in his words 'That she was on her last legs', the doctor had given her an injection to make her more comfortable. I went to see her, expecting her to be a bit drowsy but she was in a comma and she died a few hours later. This was March 16th 1991, nearly twenty years ago.

Today I have been reading an article on The Daily Mail online about a GP Howard Martain who helped people with cancer die quicker. I've read the comments people have submitted and one, well its upset me so much.

It read

i think this happened to my mum .. and I'm happy it did !! She had terminal cancer and her last days were agony for her .. no amount of painkillers helped. Her doctor, who was fantastic, came out to see her and gave her an injection after she had had a particularly bad night .. he told us that she would now slip into a coma .. he waited for it to take effect and then left. She died that night. I'm sure a lot of doctors do this and for all the right reasons .. I am grateful to my mums doctor for sparing her another day of agony ..

My mum had had a bad night, the doctor gave her an injection, she died a few hours later. It's really making me wonder, I am so upset.

I have google about liver cancer and the last stages and my mum didn't have any of the symptons, she wasn't yellow, she hadn't lost lots of weigh, she hadn't had any muscle loss. What can I do? There will be no medical records kept so long. Her GP at the time may still not be there. If I start to ask questions what good will it do? But I just need to know. I've cried so much this afternoon.

Paula


dorat
#2 Posted : Sunday, June 20, 2010 9:20:29 PM Quote
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Oh Paula, I wish I knew how to help you with this.
Reading that this morning must have brought it all flooding back. I can well understand how you feel because I read it this morning too and it brought back memories to me of my Mum's death 44 years ago now, when I was 16. She had terminal cancer and was literally fading away. She too was given a painkiller only about an hour before she died, but we know for certain that it wasn't the injection that killed her, it was the cancer.
For you it is different, in that your Mum was not showing signs of being terminally ill, even though you had been told she was.
Do you have brothers or sisters you could discuss this with?
Could you talk to the practise manager at your Mum's surgery? I think you are right about her medical records not being kept so long, someone may be able to advise you about that.
I really don't know how to help you with this, but you need to talk to someone, not keep it to yourself. It may help you just talking on here about it, or someone may know who you can talk to to get some answers.
Sending you lots of hugs for a start!
Love, Doreen xx
joeyvt
#3 Posted : Sunday, June 20, 2010 10:02:58 PM Quote
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Oh Paula, I'm so upset for you.

I can only begin to imagine what you must be feeling about this. My father died of lung cancer and when I think back on his last day or so, it was absolutely awful for him until he finally fell into a coma. I can't remember if he was given anything to put him in that state. But that's neither here nor there.

I don't know what I would say by way of advice. If you need answers, see what you can do to find some. It may open up the wounds all over again, although it sounds like that's happened already. I'd say give yourself a couple of days to digest what you've read, what you remember and how you feel. I'm really sorry for you x x x

Joanna
LynW
#4 Posted : Sunday, June 20, 2010 10:19:36 PM Quote
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Hello Paula

Not really sure what to say but do understand how you must be feeling.

GP records are kept until 10 years after the patient's death or after the patient has permanently left the country, unless the patient remains within the European Union. (Exceptions are patients serving in the armed forces or serving a prison sentence, when the records must not be destroyed.) Oncology records are kept for only 8 years after a patients death. Patients Association guide

Please don't rush into things Paula. As harsh as it may seem nothing will change and your memory of your Mum's final few hours could be affected forever. She slipped away peacefully from what otherwise might have been a long and traumatic haul, for her, for your Dad and family. Sometimes we lose people we love dearly in circumstances that are unexpected, we accept them but perhaps questions are left unanswered.

I'm here if you wish to chat Paula, NRAS have my phone number. I won't 'post' it!!
Love
Lyn xx

My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

lizziemouse
#5 Posted : Sunday, June 20, 2010 11:18:16 PM Quote
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Dear Paula,
Really feeling for you, my lovely auntie, (who was just like an extra mum to me); died in very similar conditions. My auntie had had a mole removed plus biopsies, skin grafts but sadly aggressive and advanced stage disease appeared very quickly and just a few months later.
I was just 16 at the time but I remember the end stage was very very quick, shockingly quick. I know all circumstances are different but thought perhaps sharing this may help you? I remeber pain relief was essential right at the very end - and similarly one day not needed so much but next day it really was,
I'm sure this recent news story will have many people thinking similar thoughts to you and I'm so sorry you are feeling like this,
Would it be helpful to discuss your thoughts with your own GP or a another medical professional you can trust to advise well and answer questions for you?
Take special care of yourself, sending you lots of love and a big strong (but gentle) hug xxxxx
Love Liz xxxxx
amanda_lewin
#6 Posted : Monday, June 21, 2010 12:48:01 AM Quote
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O Paula, I am so bereft for you. I have alot to say about this and will e/mail you privately.

A Dr is legally allowed to administer pain relief if a patient is dying (even if that pain relief hastens death) but not with the intention to end a patient's life. It is very complicated law.

Much love,

Amanda
Rose-B
#7 Posted : Monday, June 21, 2010 11:47:35 AM Quote
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Oh poor paula,

Not sure that raking up the past now is a good idea.

I do feel for you and realise what you must be going through though.

Take care
jeanb
#8 Posted : Monday, June 21, 2010 12:20:37 PM Quote
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Dear Paula

I just don't know how to comfort you - I wish I did.

My own dear Mum died when she was 84. She had heart problems for years and years but always managed fairly well. A week before she died, the consultant changed all her tablets, which had kept her on an even keel and I do wonder, to this day, whether she would have lived longer if they hadn't done this.

I was very angry at the time, but decided it would only upset me much more if I tried to get to the bottom of it. Mum died quickly and peacefully in her sleep - but I do still wonder.

I think you should take some time out to think things through before making any hasty decisions when you are so upset.

The most important thing for you is to know that your Mum died peacefully and whatever you do now can't change that - only make you more stressed and upset.

I agree with Amanda that the Law on this subject is very complicated, but don't think you should even consider this until you have given yourself some time to heal a little and have some breathing space. You HAVE to be very strong before embarking on this route.

Much love
Jeanxxxxx

Lorna-A
#9 Posted : Monday, June 21, 2010 3:43:36 PM Quote
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Dear Paula,

What a terrible dilemma you are in but my advice to you is let the past stay in the past. Its hard I know but cancer is such an awful disease an it leaves many people without much dignity in the end. My cousin who was only 48 went to the doctor with a Back Ache and it turned out to be secondary cancer, she had had it before and did not even know. She was given a year but I think she lasted 10 weeks and it was so awful in the later stages. My uncle too kept well and was 84, saw the doctor a few months ago and was told he had cancer and died a few weeks later. You may never find out but it may cause you so much grief in trying. Look at things another way all things happen for a reason some we do not understand but your mum died peacefully without suffering too much try to be happy for her not suffering buy some beautiful flowers and put them beside a picture of her tell her how much you miss her and that may bring you some peace. My heart goes out to you, you may never know for sure. Please do not torture yourself. Love Lorna xx
Damned76
#10 Posted : Monday, June 21, 2010 4:23:50 PM Quote
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I can't say any more Paula - just to say I'm thinking of you.

Julie
BarbieGirl
#11 Posted : Monday, June 21, 2010 5:46:40 PM Quote
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Dear Paula, I can understand your suffering. Everyone has given their advice and now its up to you to decide whether to take this further. We are all here for you x x
BARBARA
smith-j
#12 Posted : Monday, June 21, 2010 7:42:57 PM Quote
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Dearest Paula

I was very saddened to read your post. As many people have suggested, take your time in deciding what you want to do next.

You are in my prayers.

Jackie
xx
lyn2
#13 Posted : Monday, June 21, 2010 8:44:54 PM Quote
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Dear Paula

I'm sorry the news has brought back memories for you, and reading about it has made it so painful for you. I think you've been given lots of good advice and you may open up a can of worms if you decide to take matters further. I realise it must be very hard for you, but it would probably be best to remember your Mum as she was.

Lyn
Paula-C
#14 Posted : Monday, June 21, 2010 11:51:49 PM Quote
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Thank you all for your replies, sharing this with you means alot to me.

I've been thinking alot, remembering what happened and the more I think about it the more I am convinced that what happened wasn't right.

Whatever I do, nothing will alter what's happened, but I need to find out more, this won't go away.

We were told like I said that she was terminally ill, it was far too advanced for anything to be done. My dad did ask about a liver transplant but was told that it was like putting a new part into a worn out engine. I do think that she had cancer in other places, three lumps had been found in her breast.

But I keep thinking of how she was the days before she died and comparing her with other's who died of cancer. The lady next door had stomach cancer and she went home because there was no hope for her. They had to take her bed down stairs for her. She had lots of doctors and nurses attending her in the days before she died. A friend's mum died of bowel cancer, she was bedridden for weeks before she died, with her family taking turns to sit with here giving her morphine. My uncle died of prostrate cancer, again he was bedridden, looking so ill and frail. I use to do voluntary work at our local hospice, I use to go onto the ward and see patients in there for respite care. Then I think of my mum the day before she died. Walking, talking, sitting on the settee downstairs, nothing like others who I have seen towards the end of their lives. Like I said, I have googled the last stages of liver cancer and my mother was nothing like what it said.

The doctor who came out was not her GP, I don't even know if he had her medical records, even if he had I doubt very much if the discharge letter from the hospital would of been dictated by the conulatant, typed up, signed, posted and arrived at her GP's in such a short space of time. Tuesday - Saturday. So he went into my mothers bedroom after being told she had had a bad night and had been sick alot. I know she did have some sleep because she told my dad that she had had a lovely dream and had been to a lovely place. My dad said that the doctor told him that her liver was breaking up, hence her being so sick. What ever dose of morphine he gave her sent her into a comma and she never woke up.

I remember that when the MacMillan nurse came that evening she examined my mum and told me that she was very close to death. She said something that I thought and still do was a strange thing to say. She told me that malignant melanoma was the second most aggresive cancer to have, it attacked all the soft organs in the body and I should be thankful that she hadn't suffered much and that her death was quick. It now makes me wonder if she had read what the GP had done and realised things weren't right.

I know I've got a very fertile imagination and it really is in overdrive at the moment but I need some answers. My father died ten years ago, I don't get on too well with my brother (he was there) and I know that at the moment he is having really bad finacial problems and I don't want to add to his worries. Mu aunt, my mums younger sister is now 86 and she is in hospital suffering from a nervous breakdown, so I can't talk to her about it. I can't talk to my husband or daughters about it, it is too upsetting. I have thought of going to see my GP but what really is the point, I will only be using up an appointment when someone ill could do with it. I just need to talk to someone who knows about liver cancer. I am at the hospital on Wednesday and there is an area set aside with screens around for people to talk to someone about cancer. If I feel that I can I will ask if they know of where I can go or phone just to get answers to my questions.

I am not wanting to get anyone in trouble over this, nothing can change anything, but I just need to know if someone with liver cancer can just fade away so quickly.

Paula
JulieM
#15 Posted : Tuesday, June 22, 2010 8:44:05 AM Quote
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Paula I would think that if you contacted Marie Curie or St. Gemmas hospice etc, there will be somebody there who can answer your questions for you.
YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
jeanb
#16 Posted : Tuesday, June 22, 2010 9:59:19 AM Quote
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That's a good idea, Paula. I know from working on medical negligence cases that the medical profession band together and it is almost impossible to get satisfaction through litigation. If you speak to the hospice and ask a general question, rather than a specific one at the surgery, you should get a reasoned answer.

I have known two people with liver cancer/chirrosis of the liver. The first was my nephew who died a slow, horrible and lingering death. My friend Barbara, however, was diagnosed on the 2st November, seemed as fit as a fiddle, and died just 2 weeks later.
I don't think you can ever predict the likely outcome or prognosis of any cancer accurately.

I just wonder if you have chatted this through with the rest of the family and if so, do they see things the same way? I think it would be much better for you to examine the facts with their help and support, rather than go through it alone.

Please, please, don't do anything until you have had a week or two to sort out your thoughts and talk things through with either a very close friend or a family member.

Much love to you, dear Paula
Jeanxxxxx
LynW
#17 Posted : Tuesday, June 22, 2010 7:52:21 PM Quote
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Hi Paula

Please, please Paula don't take this any further. I know you have a myriad of unanswered questions and the more you ponder the more you will come across. Medical records are gone you aren't going to receive definitive answers however much you ask. Like everything else people with cancer react in different ways and whilst many of the end symptoms are similar sometimes none or only one or two are present.

Paula-C wrote:
I know she did have some sleep because she told my dad that she had had a lovely dream and had been to a lovely place.


The dream stage and being in a beautiful, lovely, peaceful, white place is a symptom common of near death. It is the brain slowing down and certain enzymes coming in to play. Sometimes people do come round from this and relate details such as your mum described. When I had the twins I had to have an emergency Caesarean on a Saturday tea-time. You could imagine how pleased the registrar was to be called out!! The delivery went okay, the boys were fine and we were put into a single room near the nurses station. The boys went to the nursery that night and I was left to rest and sleep off the anaesthetic. Close to midnight I had a strange feeling which I could only describe as acute awareness of something not being right. I was completely calm and at peace. I reached for my bedside light. My gown was completely covered in blood. I called the nurse who in turn summoned an emergency team. The words "we haven't time to take her to theatre we will have to operate here" I will never forget. I remember one of the midwives fainting (a few days later she came to apologise; she had never seen anything like it.) and then nothing. I was in a different place (not an out of body experience, I couldn't see myself), I was with people I knew but I don't know who. I wasn't frightened, I was at peace and happy to be there. It was a lovely place, open and full of flowers. I heard the Lord's Prayer being chanted, and then I came round. I was still in my hospital bed. Stupid registrar in his rush to get off home hadn't stitched up a major artery properly and I developed a huge haematoma under the scar. I very nearly lost my life. The following day I asked who had been praying, I wanted to thank them. No-one had, it was part of my 'dream'. My heart stopped twice and I was 'out' for over an hour. I will never forget.

A gentleman on our PTA died last year with liver cancer. He had stomach problems too. He missed many meetings due to his illness and I often visited George and his wife. He came to our last meeting in the middle of July and seemed so much better we all felt that perhaps he was on the road to recovery. He appeared better in himself and his sense of humour had returned. Two days later he was gone. He also had a visit from a GP, his own I think, hours before he died and he administered pain relief by injection to help him through the final stages. He was dying despite seeming to be so much better. This is another end stage symptom. A reprieve from the illness, an almost complete turn round. I understand that it is nature's way of allowing family to remember the real person not the body which is failing. This happened with my Grandma and my Mum too.

I should perhaps say that I trained as a counsellor when I first took ill health retirement and did quite a long spell of bereavement counselling at the hospital and latterly the newly built hospice. The experiences and memories never leave you. Like births, all deaths are different and as Jean says predicting a likely outcome or prognosis is very difficult. I have seen people with terminal cancer live for weeks in a near death state, I've seen others go very unexpectedly.

Bear in mind too that what has been reported is in the media. It has possibly been written in a way that sensationalises. It probably bears little resemblance to reality. Please try to ignore what you have read.

Paula, I am certain that your Mum was not victim to some unscrupulous medic. Her cancer wasn't just in one place it had spread and once it affects other organs too the body becomes very stressed. Her liver failed, it was not clearing the toxins. The morphine allowed her last few hours to be pain free and for her mental state to adjust to imminent death. Without that she may have lived another few hours but struggled to die in an attempt to hold on to life. That really is not pleasant to see. Your Mum experienced a beautiful death in a place she had visited a short time before and pain free. Please try to take solace from that.

Amanda has my email address if you want to get in touch. I do wish you lived next door I'd pop round and put the kettle on! Perhaps you will get an opportunity to speak to someone tomorrow, do hope so.
Thinking of you Paula.

Lyn xx

My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

Maria_R
#18 Posted : Tuesday, June 22, 2010 9:05:16 PM Quote
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Lyn
I know that your post was really for Paula but thank you for sharing it with us. Having recently lost my dad and am now having to come to terms with my mum reaching the later stages of chronic lung disease I found it comofrting and reassuring. I wasn't with dad at the end but I was told he fell asleep after eating his rice crispies... so I have this nice final picture of him.

Maria
Paula-C
#19 Posted : Tuesday, June 22, 2010 11:27:09 PM Quote
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I can't begin to thank you all for your kind words and messages. I feel that by putting my thoughts on here I am talking to people about it. I just can't bring myself to speak to my family about this, not at the moment anyway.

I've had a great deal of comfort from the fact that my mum had what I called a nice death. She was at home in her own bed with her husband and two children with her. We managed to get the vicar to come out to her. We had been trying for hours and when he came we all joined hands around her praying for her. It was as if she was waiting for this to happen, because its was only minutes after this that she did give in and died.

Thank you Lyn for putting what you put, I did think at the time that she had been given a look at where she was going. I told the nurse what she had said and she said it was the morphine that gave her the nice dream. This happened before she had the morphine. She said that she was sitting on a seat, with flowers all around her, the sun was shinning and there where birds flying around her. She was frightened of birds, but she said she wasn't frightened at all. I have this picture of it in my mind and when I think of her I see her there.

Thank you Jean for telling me about your friend who died only two weeks after being diagnosed, its made me realise that it can and does happen like it did for my mum.

I'm still wondering what to do about it. It's no use going to ask my GP or even going to me mums GP and asking, I always think that the medical profession is what I call a closed shop, they all stick up for each other. I might tomorrow when I go to the hospital see if there is anyone at the Ask about Cancer section and see if they can tell me where to go for an answer.

I've always felt that my mum was too young to die, she's missed so much of my girls growing up. Karen was nearly 14 and Julie was 12, she would of been so proud of them.

Paula


LynW
#20 Posted : Wednesday, June 23, 2010 9:58:43 PM Quote
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Hi Paula

How did you get on today? Did you get an opportunity to speak with anyone?
Hope you are okay and feeling less upset about it all.

Lyn xx
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

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