Matron knows best

Day 84 

General status update

Nose: unspeakable

Hair: unbrushable

Mouth: untouchable

Nausea demon: resting

Chemo Muse: unstoppable

Chemo Brian: unwakable

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Fatigue/weakness: I’m feeling a lot better in general, now the worst side effects have died down for this cycle, but weakness is really limiting what I can do. I get tired very, very quickly. This seems to be increasingly steadily each cycle. You just have to rest, no point getting frustrated about it: as R keeps saying, all these side effects show that the chemo is working, something I often forget.

Anxiety level (1-10): much reduced now Matron is on the case

State of mind: it is now March – sometime next month, I will be able to go swimming.

There is something deep in the English psyche that warms to the idea of a Matron, especially those of us in middle age with fond childhood memories of the glorious Hattie Jacques as the Matron in the hospital-based ‘Carry On…’ movies: the hospital Matron is associated with efficiency, good order, beds with ‘hospital corners’, and patients being looked after properly, in a prelapsarian Golden Age before the NHS got taken over by layers of middle management and performance targets.

On Thursday I got to meet a Matron for the first time.

Some readers have been wondering whether any of my howls of anguish about the various debacles during my diagnosis and treatment have been heard by, or evoked any response from, the Charing Cross Hospital, and the answer to both questions is yes. A couple of weeks ago I received an email from the Lead Cancer Nurse at the Imperial College Healthcare Trust, the NHS Trust which includes Charing Cross Hospital and four other major London hospitals: Hammersmith Hospital, Queen Charlotte’s and Chelsea Hospital, St Mary’s Hospital and The Western Eye Hospital.

She wrote that she had come across my blog and felt compelled to contact me, both to apologise for the more distressing experiences I described, and to undertake to address the issues raised by them; further, she asked my permission to use relevant material from the blog to give a very direct patient perspective, on both positive and negative experiences of care, in the Trust’s staff training programme on improving the patient experience.

We met for a cup of coffee and a chat, and I was both cheered and impressed by Sarah’s enthusiasm for finding ways to improve the patient experience. I had been quite surprised that she wanted to use material from the blog directly; she pointed out, however, that the power of a first person narrative can make a much greater impact than anonymised and aggregated feedback.

A couple of days after our meeting, I had my fourth dose of FEC, which went rather badly wrong because of the problem with my PICC line; I was still considerably distressed the next day as I was writing an account of it for the blog, and copied the blog post to Sarah even before I published it.

 I won’t repeat the whole PICC line saga here because it’s all in that blog post, but a key issue was that the nurses at Clinic 8, who flush and maintain my PICC line every week in between doses of chemo, had assured me that as long as you could flush saline solution into the PICC line it was fine even if they could not draw blood, resulting in me turning up for two consecutive doses of chemo with a PICC line that was not working properly, according to the chemo nurses.  On both occasions this resulted in harrowing experiences for me in the chemo ward.

Sarah responded to my email immediately, and called a meeting at the hospital with those in charge of the Chemo Ward and Clinic 8 to address what had gone wrong with my treatment. I was then emailed by the Matron for Chemotherapy, who asked me to come in for a chat, and that is how I came to meet a Matron for the first time last Thursday.

The very good news is that no-one else is going to be sent away from Clinic 8 with a PICC line that is not functioning properly; those nurses who apparently forgot it have been very firmly reminded of the policy that unless blood can be drawn from a PICC line, it is not deemed to be safe to use for infusing chemotherapy drugs, and further investigations must be put in place immediately. The Matron, Becky, undertook to arrange for me to have these investigations next week, so that my PICC line would be sorted before the next dose of FEC, but then something miraculous happened which rendered this unnecessary. She looked at my line, flushed it with saline solution, and immediately the syringe filled up with blood, something it had failed to do on numerous previous occasions.

I was awestruck – this woman is like a Horse Whisperer, only with PICC lines. Five different nurses had failed to get blood out of my PICC line, but as soon as Becky touched it, the PICC line stopped misbehaving, got its act together, and the blood positively gushed forth.

Becky has undertaken to keep an eye on the PICC line as we come up to the next dose of chemo and that now makes me feel safe, and confident that we may be able to get through FEC5 without any mishap, which is a huge psychological boost; my previous two experiences left me shattered, and terrified of going back, but I have been assured that every care will be taken to ensure that my final two chemotherapy treatments will go smoothly.

We also spent quite a lot of time discussing the side effects I have been experiencing, and how best to manage them, and even my growing problem of dread and anticipatory nausea before each dose of chemo: Becky is putting me in touch with an NHS complementary therapist who may be able to help me deal with this. This wasn’t something I expected any assistance with, and full credit to Becky, who has clearly read the blog very closely indeed, and had numerous suggestions to make. It seems that chemo patients are usually invited to visit the Chemo Ward before they start treatment, and given advice on what side effects to expect, and how to deal with them, but unfortunately there was a brief hiatus in this practice when I was starting chemo.

Between them, then, Sarah and Becky have responded very fully, and with a very positive spirit, to the various issues regarding my treatment raised here on the blog; not only that, the blog is being used to raise awareness with staff members more widely about problematic aspects of the patient experience, and to highlight examples of best practice. I am very happy to think that my experiences will contribute to improving patient care at Charing Cross, and across the Imperial College Healthcare Trust more generally.

And I’m deeply, deeply relieved that I now have a Matron in personal charge of my PICC line…