Dealing with Cancer – Part 1B

No, you have not missed a blog, Part 1A took place 30 years ago, long before blogs were even thought of!

My abiding memory from that time is of me standing in the freezing cold at the bus stop outside Fairfield hospital, after being told I had pre-cancerous cells in my cervix that needed urgent treatment. All I could think about was how I was going to tell my family. We had not long since buried Dad after what had been a very difficult year for us all.

In the end I played the whole thing down, got on with it, had the necessary fairly minor treatment at North Manchester and for the next 30 years breathed a sigh of relief every time the result from my annual smear test proved to be clear. The best thing to come out of that situation was my later involvement in establishing the wonderful Bury Cancer Support Centre.

Roll forward 30 years and the dreaded ‘C’ word is back in my life, only this time it’s different. This time here is another dreaded ‘C’ word attached – ‘Christie’s’, because this cancer is a stage 1B endometrial  The greater part of my reproductive organs have been removed by a crack team at St Mary’s who have left me with little more than an inch long ‘x’ on my belly. Now I am facing two lots of brachytherapy treatment that will apparently reduce the chance of the cancer returning from 20% to less than 5%.

It’s not a terminal cancer, the prognosis is good, but my newly gained retirement was hijacked on day one and so I am somewhat ‘lost’ at the moment. If it were not for the input from Macmillan, plus the love that surrounds and supports me from friends and family, I think I would be on the floor. Here I am stuck at home, unable to do much of anything except wait and ask other people for help and I am not much good at either of those. Despite recovering well so far (the creative brain cells are beginning to kick in again), I am utterly brassed off by the shambles that passes for ‘more efficient provision of services’ in the Pennine Acute Hospital Trust. Efficient for whom? Certainly not for patients or indeed the medical staff.

Some examples:

Transport: During this cancer journey, I have had to visit four different hospitals, nine times so far and only one hospital is located within an hour of my home either by car or public transport.  As a single pensioner living alone, it’s a big ask for someone to do a 30 mile round trip into Manchester City Centre or to Oldham to arrive at 8am or even at anytime on a weekday.

Google maps tells you the required journeys are quicker by pubic transport, which is so unreliable that it cannot be trusted to get you there on time (or even at all) especially when you face the two or three changes of bus and tram necessary to do it. Ambulance transport is apparently so scarcely available nowadays that only the severely disadvantaged can get a booking, so a big thank you to wonderful friends and family who have rallied round to help me get about in relative comfort.

Record Keeping: I have completed umpteen different forms with umpteen nursing staff, all requiring the same information on umpteen almost identical forms. I have given my consent umpteen times for my data to be shared for medical purposes – why isn’t it being done? Why can the latest batch of staff looking after me only see six months medical notes onscreen – and then only if they have been scanned in by the time I get in front of them? What the hell are the computer records for if not to inform their decision-making? I keep a file of my copy of letters from a hospital to my GP stretching back several years and yes – you have guessed it – I am often asked if a photocopy can be taken for the records!

Organisational issues: I have already had a surgery cancelled the evening before it was due to happen – I was informed of this by a letter hand delivered to my home by a taxi driver!  Then informed of the re-scheduling two days later – into a completely different hospital using the same method of delivery. How can that be considered efficient? Did anyone consider how difficult it might be for me to get both transport and care cancelled and then organised again a second time at such short notice?

Christie’s: Why are consent interviews done at Oldham whilst counselling and pre-ops are done at Manchester? Why could there not be one day of outpatient appointments in one place and not three days in two different places?

Staff: Making decisions on their feet on the front line – a missing pre-op file from North Manchester meant my checks and tests had to be redone just as I was going into theatre in Oldham. It made me miss my slot for surgery, so I lay for half an hour in the theatre arrivals office, watching a nursing sister shuffle post-it notes on her desk rather than rely solely on the on-screen booking system, which had been overtaken by three emergencys. Theatre staff were constantly coming in to ask her what theatre, which patient and being sent away with the appropriate note to confirm what they should be doing, to whom and where.

It broke my heart to see a nurse at Oldham in tears after talking to a young cancer patient who was being sent home, her cone biopsy op cancelled AFTER she had already been prepped for theatre, due to those same emergencies taking priority. Can’t repeat what her husband said when he arrived to collect her later that day. I understand the issues, but how dare NHS put them through that mental anguish.

I could go on – about the poor hygiene, health & safety and staff well-being issues that I have sat and observed since January – but I won’t. It isn’t just about a lack of investment in the NHS causing problems – it’s about common sense methods of organisation being sadly lacking. No wonder it’s in a mess.

All this whilst I am dealing with cancer. Good job I am a strong and resourceful woman.

About starspeakman

Poet, Writer, healer, nature photographer
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