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.

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  
 

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