Visitors since 20 January 2010

Friday, 29 January 2010

Clipping The Wings Of The Angel Of Death

I have to go back a bit and do some explaining! In early spring 2009 when I was referred back to my GP from the Oncology department at the Hospital I was not referred by the oncology department to the Macmillan Palliative Care team, however my GP did. Now I have already written at length about the Macmillan Nurse “D” and how he doesn’t speak to me – but as there are only two Macmillan Nurses covering my home area I was left with “G” – shortly after I was referred to her she called in on us and the meeting really didn’t go all that well. Firstly “G” was 40 minutes late – and perhaps I’m over reacting but I did think that someone could have called and let us know that she was running late – seeing a Palliative Nurse for the very first time is quite a stressful thing and the nurse being 40 minutes late doesn’t help.

Secondly “G” arrived with someone – she made no introduction or explanation until they were both on the sofa in the living room when she introduced her colleague as "someone who was shadowing her" and did we mind her – the colleague - being present. I found this very odd – the time to ask about the presence of a third party surely should have been asked of us over the telephone before her arrival. “G” did not know us and – as I already said – meeting a Palliative Care Nurse for the first with all the implications is very stressful. “G” then asked a series of questions – apparently memorised from a list – And I totally understand why some of them were asked.

“Do you know what’s wrong with you?” and so on and so forth – eventually we got to “Do you know why I’m here?” and I answered “Because you’re the Angel of Death?” - Well OK perhaps it wasn’t very funny but it would have been nice if she had said something like “You’re OK – I’ve left my scythe in the car” instead of getting angry with me.

The next day I saw my GP and I told him that I hadn’t got along very well with “G” and he put that into my case notes. Unfortunately a few days later there was a meeting at my surgery which included “G” – “G” was sat directly opposite a large screen onto which case notes were flashed and she sat staring at “It would be true to say that Richard did not get along with “G””

A couple of days later I received a letter through the post from “G” telling me that after talking with my GP and with my partner Gavin she was taking me off her active list.

In June 2009 or perhaps July I started seeing my GP about the coughing and about my constant tiredness – and he started treating the first and trying to find a cause for the second. At the same time he suggested that I would be a good idea if once again I was put in the care of a palliative nurse. I said that Gavin and I would prefer not to have “G” as we found her unfriendly and of course the other nurse for this area would not speak to me. After much and many conversations “G” accepted me as a patient and we accepted her as my palliative care nurse. Shortly after this she rang me and we had a conversation which I can’t really remember.

Now we come to the present day – or at least a week ago! On Monday the 18th of January I rang the Macmillan Help line and talked at length – at length? it was over an hour - about how I felt abandoned and invisible – in fact much of what I put in the first posting in this blog and the reason that I started this blog. At the end of our conversation the nice lady on the end of the telephone asked if I minded giving her my name and postcode and of course I didn’t.

The very next afternoon I received a telephone call from “my” Macmillan palliative care nurse “G” wanting to know “how I was” - was this a coincidence? I don’t think so although I might be wrong, but it was only the second call I had received from her. I have reported the conversation with “G” in a previous post. But it was as a result of this I saw Dr “K” at Pricilla Bacon Lodge with the happy results detailed in a previous post.

However and additionally I had a rather bizarre conversation with Dr “K” – she wanted to know why I hadn’t been referred to her – as a Palliative Care Doctor – months ago – I explained my difficulties with the Macmillan Palliative Care team – One won’t talk to me and the other removed me from her case load until asked to put me back – Dr “K” was surprised that someone hadn’t been contacting me at least every 4 weeks to find out how I was. ....... But she then rather shut up about direct issues and talked indirectly – I was asked if I wanted to stay with “G” to which I replied that as far as I knew there were only 2 Macmillan Nurses in Norwich and she said that there were 20 in Norfolk and she would be very happy for one of the others to care for Gavin and I. I then said that I would talk to Gavin and I have done so – and so we will have a new Macmillan Nurse very soon.

I feel very ripped off by “G” but heartened by Dr “K” and her “We can’t cure the Cancer but we can handle the symptoms attitude” – I also like Gavin’s comment that he doesn’t care who we have as a Macmillan Nurse “As long as they’re friendly”