I see that the Assisted Dying Bill is to be debated this Friday. Archbishop Justin Welby has waded in with his opposition to it apparantly supported by Jewish, Muslim, Sikh leaders. If it goes the way of the similar bill in Scotland it will be defeated. Pity they don't ask those to whom it matters most for their opinion. Instead of being able to ask a GP for a prescription of pharmaceutical grade medicine to end my life at a time of my choosing, should I need to. I will now have to risk a botched suicide attempt by using drugs, possibly of inferior quality, bought online.

I know that good palliative care is the correct and best way at the end of life, but in practice it is severely lacking in the UK as I witnessed nursing both my parents and a good friend in their final days.

Two weeks ago I became quite ill, terrible pains in my ribs, burning pains in my back, my stomach was hugely bloated, pains in my kidneys and bowel and I was bleeding.  I phoned my gp surgery but they said they couldnt do anything and neither could my local hospital.  So I phoned the hospital I have to attend in London.  Left a message on the answerphone and someone phoned me back at 8.00pm saying she would find someone to speak to me.  I spent 4 days curled up in bed thinking the worst, before an oncologist phoned me at 10.00pm. His advice was that as I had an appointment on 22nd that I should take paracetamol.  I am learning to live with it all, but if I had something stronger God knows what I would do. If this is what I can expect I know I am becoming quite frightened.

Hi Pauline

I am horrified at the lack of care you are receiving, most of us here know what excruciating pain cancer can cause and how reluctant doctors are to prescribe "enough" pain relief. 8 paracetamol and 8 iboprofen a day only just take the edge off of severe pain. OK opiate and synthetic based opiate painkillers are both dangerous and addictive but it really doesn't matter when you have limited time in front of you. There seems to be some sort of moral imperative that it is good to suffer some pain, and that in no way should you experience any form of euphoric high as a side effect of taking a pain killer. This same moral imperative applies to taking your own life to escape a world of unbearable pain only to prolong the inevitable. What perverted logic do our religious and political leaders subscribe to. This point of view is from my own experience both as a cancer patient and as a carer to both my parents and a good friend who I nursed to the end of their lives. Pauline I hope you are now recieving decent care and pain relief, it is very frightening when you get no response when your are in trouble, your story has left me quite disturbed too. Best wishes Kim

Hi Kim and Pauline

I am truly appalled at what you say in that you cannot get adequate pain relief in this day and age. I have never personally suffered such agonies as  you are enduring but travelled the journey with my husband for nearly three years from a terminal diagnosis to his death in January this year. His experience as regards pain relief was totally different to what you are having to deal with.  He was terrified of becoming a 'reliant drug user' (his words to his consultant and GP) but when his need became great they were there for him every inch of the way, though the dosage was gradually increased as per his needs. He too started on paracetamol, ibuprofen but in the last year of his life he moved on to tramadol and finally liquid morphine and  monitored regularly both through his hospital consultant, GP and a great palliative care back up team. He only requried the morphine driver in his last hours but this still left him perfectly able to converse normally and he he was grateful for the community nurses who enabled him to stay in his own home and pain free until he passed away holding my hand.  I grieve his loss daily but will always be thankful that he died with dignity.  I only wish it was the same level of care everywhere. Jules

Kim, I have to wait two weeks before I see a n oncologist.  I take enough pain killers to help me sleep, which is what I am doung all the time now.  It even hurts to breathe.  I have never asked for help before , since having cancer, and just thought they might have seen me earlier.. it is scary knowing that no-one will help me.

Kim, I have to wait two weeks before I see a n oncologist.  I take enough pain killers to help me sleep, which is what I am doung all the time now.  It even hurts to breathe.  I have never asked for help before , since having cancer, and just thought they might have seen me earlier.. it is scary knowing that no-one will help me.

Pauline

Do you have someone to act on your behalf? If so get them to phone your oncologist's secretary tomorrow and forcefully impress upon them that you need to see someone urgently. I know this is difficult to do by yourself when you feel really ill. Also a call to your GP to  press home the message won't go amiss, plus a call to the McMillan nurses at your hospital, sometimes you have to fight your ground otherwise you get pushed to the back of the queue. Maybe the nurses here may be able to help you out if you call them, I am seriously worried for you, you need some help now don't be afraid to be pushy asking for it. Kim

Pauline,

Hope you can do as Kim suggests, you need that assistance now, not in two weeks time.  If the receptionists will not help/listen, then call 101 (my friend had to do this) or even 999  and give them the full facts, especially your breathing pain. I do so hope you can get help sooner - I am feeling angry that you are being let down by the system. Jules

Hi Pauline 4

The moderators let me know about your post.  What a horrible situation to be in.  I know you have already contacted your GP, but as the pain is so bad I would contact them again.  I can’t think of any reason why they would not be able to assess your pain and prescribe some better pain killers.  If they are reluctant to do this then ask them to seek advice from the local community palliative care team and refer your case to them as a matter of urgency.

If this suggestion doesn’t work and you don’t get to see anyone till your appointment with the oncologist, then make sure you are very clear with them about how bad the pain is and ask them about getting you referred to the palliative care team or a pain clinic to make sure you have better access to care in the future.

I realise that some of the experience of other members on this thread of pain and palliative care services has been poor, but it should usually be possible to control pain with the right specialist input like in Jules's husbands case.  As Kim suggests getting back on to the GP and the oncology department and impressing on them how bad the pain is may well help to get things moving.

I hope you get sorted out soon

Martin

Many thanks for everyones helpful suggestions. I have 3 adult children, two of whom were abroad on holiday and the other in hospital herself so I felt fairly alone.  It was a strange feeling that just lying in bed in pain and I couldnt, or wouldnt, do anything. My energy had gone and I just couldnt move, then got to the point where I didnt care anymore.  Eventually some of the pain has eased a little and I got a friend to take me to my gp surgery where I eventually found a friendly ear.  Things are not right and I think I am more worried about the cause rather than the symptoms now. I only have 12 days until my appointment now so I am counting the hours.

Hi Pauline

So glad to read that you were able to find the inner strength to get help from your friend and that there was a friendly ear at your GPs.  I' m not surprised you felt low and vulnerable trying to deal with high pain levels alone and worried.  I am sure too you were thinking of your daughter who is also in hospital and do hope she is doing okay. We all need 'listening ears' in times of crisis and this forum has proved time and time again (to me) that virtual understanding and support can help. Sending you a hug for an easier day today and if you need a rant your forum friends will be here.  Jules x

Hi, Jules, you are so right - being able to come on here has been a godsend for me. My daughter had a stillborn baby last November, had a major operation when she was four months pregnant in May and is now in hospital bleeding with a stomach full of blood clots, my other dauhter has 3 small children and works shifts as a paramedic and my son lives an hours drive away.  Its life today unfortunately. But they are good to me and I have lovely friends.  But I need this forum!

Hi Pauline

Hope you managing okay.  How very sad and concerned you must be for your daughter; such a traumatic experience. I do hope she is receiving the best of care. Life in general seems so much more stressful these days and being able to share our thoughts with those who understand without worrying our own loved ones, gives a little release. Sending a good morning hug.Jules x

Ah, thank you, Jules, that's so kind of you.  I think we all know the result of this afternoons vote. My MP replied to my signing the petition with the old arguments that elderley would feel obliged to take their own lives under pressure.  There would be safeguards I am sure, and you would have to be terminally ill.

Looks like our benevolent masters are not yet ready for such a big step. 70% of the electorate support this bill but as usual there is a disconnect between polititians and the people. The result ended up with 70% of MPs voting against the bill. Perhaps if your MP voted against it you could write asking them to make a case  for extra funding for palliative care which is lamentable in many parts of the UK. Kim  
 

Well. I am not sure anyone will be surprised at the result of the vote and the debate will continue on. I have mixed feelings on this one so apoligise as I would not want to upset anyone.  My Mum (now 89) has been bipolar for many many years and had at least three three attempts at taking her own life (my Dad's actions always managing to obtain help in time). When she was 'between episodes' she could not understand why she would want to do such a thing but often talked of wishing she could hop on a plane to Switzerland and end the misery that was depression.  In the good times she enjoyed wonderful holidays in Switzerland -mixed messages for sure. She now spends her time just sitting in a chair 'wanting death', telling everyone she cannot get what would be best for her and its hard as she tells me she would give anything to have had what my husband had - terminal cancer for three years.

My husband never one requested to be allowed to 'die early' as despite his diagnosis he wanted very much to live as long as he could as best he could and even told the community nurse (When he though I was out of the room) though not afraid of death he would  not wish it on himself.

Kim, I too wish that palliative care was not so patchy around the country and appreciated how lucky we were as a family to have the most amazing support (I live in Middlesex). I am also sure that if they were to hold a referendum, the people's vote may well be different. I often wonder what a vote amongst the professionals who are at blunt end of this whole debate - the doctors - would hve to say if they were allowed to speak freely.  I somehow feel that this is such a personal 'wish' that there will never be an easy answer.  My heart goes out to all those who are disappointed today. Jules