Another no holds barred post... just so no-one gets a nasty surprise.
From time to time, we hear heart-rending stories of how people have died in appalling pain seemingly without adequate pain relief.
More than two years ago, when I was first diagnosed with cancer, I had a conversation with my GP about pain relief during my treatment. He assured me that I did not have to suffer, indeed should NOT do so, all I had to do was ask. I did ask for different forms of pain relief during my treatment and on each occasion we made a decision regarding my needs together.
Fast forward to now. Obviously my needs are now different given my life limited status. I am interested in dying with dignity (note lack of capitals) so I have been doing a little research. Make no mistake though, I want to LIVE as long as I can.
One article I read stated that their relative had had to suffer without adequate pain relief, being in excruciating agony for the last hour between four hourly due doses of morphine. I was surprised because, already in my experience, this has been sorted out already. I am going to outline in detail how this has worked.
First, I went to my GP in intolerable pain at the time I had severe ascites. He prescribed Oro-morph for me. This is morphine diluted in ethanol and works very quickly. Later that day, I was admitted to hospital, and my Little Hospital Macmillan nurse came to see me. She asked me what I knew about morphine. My first remark was that I knew it was addictive. Her reply was that if morphine was required for severe pain addiction was not really an issue. She went on to explain that they were going to add up all the oro-morph I needed/used that night so that they could calculate a different option for me. All through the night, whenever I needed pain relief the nurses brought me my medicine. I was never told I'd had too much and refused my pain relief. That morning a calculation was made by the doctors and I was prescribed a regular amount of Zo-Morph. This is a sustained release form of morphine. Capsules contain tiny beads which release the tiny dose of morphine evenly over time. The dose of this was calculated for now but, I was assured, could be reviewed WITHOUT an upper limit, at any time according to my pain needs. I still have access to my liquid morphine, should I need a top up. If I need frequent top ups this is a cue to increase the dose of the sustained release version.
During my recent stay at the Big Hospital I was reassured on admittance that my pain relief needs would be a high priority. Indeed, I was regularly asked if I needed pain relief. When I was especially poorly with nausea I was offered a meeting with the Big Hospital Palliative Care nurse. This was not to sort out my pain but my nausea. In the end, my needs were met by reviewed anti sickness medicine but I would have been offered a syringe driver (a method of constantly delivered medicine in infinitesimal amounts) which would be loaded with medicine every day. The needle is minute and is inserted just under the skin. Syringe drivers can also be used to deliver a cocktail of drugs in the same constant manner.
One complaint I have read on more than one occasion is that patients only see their consultants infrequently and for very short periods. I have a fabulous consultant in Dr M. She is very caring, very dedicated and I know she has my best interests at heart. However she cannot be on the ward all the time, she has clinics to attend in the Little Hospital as well as the Big Hospital. What she does have are House Officers who are her eyes, ears, hands and legs and the ward has Registrars available 24/7. If my medication needed changing, reviewing or adding to, at any time, these doctors were available to do so. If I asked a nurse about an issue, they were able to ask a doctor very quickly. I will admit that this is a specialist Oncology ward and that people are not always so lucky to get such specialist care.
I am an ordinary person. The care I get is available to all who have a gynaecological cancer at the Big and Little Hospitals. There are Macmillan Clinical Specialist Nurses at both hospitals ( I know them all). Palliative Care nurses are at both hospitals. Both towns have hospices providing palliative care. I am receiving palliative care.
Please note, palliative care does not mean end of life care. I am nowhere near the end of my life, in as much as any of us know.
What I have done is heed what my GP told me. All you need to do is ask. I have asked for help, I have asked for what I needed. None of the professionals caring for me have time to keep asking me if I'm ok when I'm at home. It is not their job. My job is to realise when I need help and then to ask for it.
This I have done, and I will continue to do so... and should I no longer be able to so myself, I know that my family will do it for me.