April 2005
In the eyes of the public, Macmillan nurses are generally seen as the faultless Florence Nightingales of the cancer community. My social worker sister in the Orkneys speaks of them with great enthusiasm:
All those I know who have been through long and/or painful struggles with cancer have found a great source of knowledgeable help - for them and their carers - from 'macmillan' nurses. We're probably well resourced in Orkney just because we don't have easy access to consultants in such a small community, and these specialised paramedics - or barefoot doctors - or whatever - are the lynch-pin of the service to cancer patients. Have you been pointed in their direction, I wonder? They do seem to have the advantage of not being parcelled into 10-minute slots...
But my experience has been quite something else.
Every time I see the consultant at hospital the Macmillan nurse is there. She brings with her a rather dog-like pouty-coochy-coochy "I am here to give you sympathy" expression. I suppose you are meant to catch her eye and be immediately comforted. I just find it irritating. She makes the tiny consulting room feel very crowded. I feel as if my time with the doctor is being intruded upon.
Once you have seen the doctor the routine appears to be that she hangs around seeking out opportunities for touchy-feely. However she is just not the kind of person I have any inclination to blubber to and it really doesn't help for somebody to have bad breath if they perceive their role in touchy-feely terms.
On my second appointment, I said I'd like to look at my medical records and the doctor said yes certainly, I could go through them on the spot. My goal was to note accurately all the important information from the records as quickly as possible. I was left in the room, and started to take down notes with pencil and paper in my normal standard analyst manner. The Macmillan nurse then came back into the room. She sat right next to me and put her hand on my arm and her bad breath right in my face. "Isn't this upsetting you", she says, stroky-stroky as she speaks. It is obviously impossible to continue systematic, focussed note-taking when somebody does this to you. I succeed in taking deep breaths and not telling her to fuck right off away from me. I just say "No" and try to get on with the job. She continues to sit there very close indeed to me. I think to myself, make the most of it, she'll be able to explain any medical terms I don't understand. So I ask her where the vena cava is - the records tell me that this is being diverted by my mass. Silly me, if I'd thought I would have realised that this would be an excuse for more stroky-stroky. I think that stroking the side of somebody's neck would generally be considered quite an intimate gesture, and I would have thought it more appropriate for her to use a simple point or show me by stroking her own neck. Stroking like that by a stranger is something I just do not like.
Then I come to the biopsy report in my records. In a previous conversation, the Macmillan nurse had assured me that the way that my cancer was behaving (a large mass in my chest cavity, but no signs at all of any active primary in the lung) was completely normal for a lung cancer at that stage. What the biopsy report tells me now is:
Comment: The features are judged to be those of a high grade non-small cell/large cell carcinoma, which is apparently neuroendrocrine marker negative. A lung primary is not excluded despite the negative TTF-1 staining, but other primary sites are also possible.
So, I say to the Macmillan nurse - "Look, you can't call this a typical lung cancer, surely?" She gives the appearance of reading the paragraph which I am pointing to in the biopsy report. "Oh yes, she says, running her index finger under the two words "lung primary" in the report -"Look, they say "lung primary"". I reel back in disbelief at her failure to place these words in the context of the sentence in which they were used. "You're really saying this is perfectly normal for somebody with lung cancer?" I ask. "Yes" she repeats. I decide to assume that she has the best of intentions. "Look", I say. "I think you're interpeting me as being in denial that I have a terminal cancer. Let me assure you that I'm perfectly aware that 85% of those with unknown primaries are dead within a year of diagnosis. All I'm saying is that there is clear uncertainty and atypicality in my case, and this may mean that the course my cancer takes is significantly different from a standard lung cancer patient." Once again she insists that I have no reason to imagine this.
At this point I decide that there's just no point in treating this person as a useful source of medical information. I tell her that I'm quite happy to continue looking through my medical records on my own, I'm sure she has lots of important things to be getting on with, so would she like to leave me to it? She insists that she wants to stay. "Why", I ask. "You interest me ", she says, pouty-pouty, stroky-stroky. I just couldn't believe it! I'm absolutely certain that there was no intention whatsoever on her part of making sexual advances to me, but combined with the previous stroking on the neck it's coming to appear as if "chat-up" is precisely the model upon which she's basing her modus operandi.
And yes, one can imagine old men lapping it all up... and perhaps many more ordinary folk. But it's noteworthy that two of my old friends who have suffered breast cancer have also experienced the same kind of irritation as me. One is a GP, and she says:
I was interested in your reaction to the Macmillan nurse as I have to say some of them get up my nose (I don't think this is territorial) but the majority of patients absolutely love them. I sometimes wonder if this is because they think they should or because the media is nice to them. They get a very good press which on the whole doctors don't. My rather jaundiced view is that patients are poor judges of medical staff. They say that Harold Shipman's patients adored him!
And from the other:
your description of "touchy feely" hanger-about could easily be applied to the woman who always seemed to be hovering in the mastectomy ward - she seemed totally wet, and her opaque sympathetic fuzziness made me want to run a mile rather than have to speak to her. She reminded me of one of the lecturers on my social work course, an old-fashioned case-worker who would enquire sweetly: "I sense some hostility in you; what do you think is making you so angry?" The desire to shout"YOU!" sadly never overcame my endemicly law-abiding nature.
I don't have any doubts that for many, probably most people with cancer, Macmillan nurses do provide the support which they and their families need. I've found myself that tasks like filling in forms to claim benefits can be nightmarishly daunting, and I'm sure I'm unusual in my determination to take on the challenge of doing such things for myself. Added to which, the simple fact that I feel much fitter than the average "terminal" must make a lot of difference to my perceptions.
Notwithstanding, I would expect that there's a significant minority of people like myself who want to handle terminal illnesses in ways which don't fit in with the expectations of Macmillan nurses, and to whom Macmillan nurses don't have the flexibility to relate comfortably. Perhaps a key factor is the extent to which the patient is intellectually confident and questioning. Since Macmillan nurses provide an integral part of the support available in the community, it's most unfortunate that experiences such as mine have the capacity to leave some patients with a strong desire to have nothing further to do with them.
I emailed the consultant to say: "am I permitted to request that I have my consultation with you without the Macmillan nurse present? At the last two appointments I have found her presence in the very small consulting room sitting centre-stage next to the doctor on the bed, positively intrusive, and I do not recollect that I have found helpful any of the interjections she has made or questions which she has raised."
My appointments since then have been blessedly free of this unwanted presence.
