I am a morning person, at least I am now that I am a bit older and my hell raising youth* is becoming a distant memory. I love the early morning, especially at this time of year and I have sat in the garden today as a chunk of moon was gently replaced by the soft light of early morning. Two blackbirds were having a song duel, with the occasional accompaniment of a wren and a goldcrest.
New day
Same cancer and right now, no plan from the medics.
It’s Monday and 72 hours since the London team dropped their mini-nuke and cancelled everything. At times, it’s been a stressful weekend of waiting and fuming. I’ve imagined going berserk in the London unit, the image of hurling a red fire extinguisher through a window was really quite vivid. Don’t worry, I appreciate the importance of not tampering with emergency equipment, keeping people safe is part of my job! The windows will remain intact; they are some miles away in London and I am, for the moment, being an almost completely sensible grown-up, although I do owe the cat an apology.
I am now waiting to hear from London and Taunton. I don’t think that there is much more I can do right now. I had thought about driving to Taunton equipped with sandwiches and coffee and camping out in the Beacon Cancer Centre until they arranged and did an echocardiogram. But they are not responsible for messing everything up and I’m not sure that this would actually progress things any more quickly.
So, what has actually happened since Friday at 4pm, prior to which, I was calmly prepared for a trip to London to start the pre-op process?
At around 4.15, I get a call from a St Mark’s nurse. She is very apologetic and obviously mortified to have to tell me that the pre-op is cancelled. She does not know the reasons for this cancellation, only that the anesthetist has said that they want me to have an echocardiogram before they will clear me for the pre-op. She is clearly flustered and explains that because it is late on Friday, she can’t get hold of anyone to try and progress anything. She thinks that the echocardiogram will need to be done by the Taunton cardiology department.
The wheels come off my world.
I phone the Taunton colorectal nursing team and leave a message. One of the team phones me back at around 4.45. She listens while I vent. However, it’s late on a Friday and everyone has gone. I offer to drive to Taunton and wait for an echocardiogram, that night or at any time over the weekend, but they don’t do echoes at the weekend.
I find as many phone numbers as I can and leave voicemails everywhere.
I am pacing like a caged animal and realise that I am probably quite an unpleasant person to have in the house. Boots on, and off for a dusk walk in the woods. As I walk, I post a picture of a bottle of whiskey and state that I may drink the whole thing, and I comment on ‘numptie’ doctors. Our youngest son calls me to find out what is going on, and a nearby friend contacts me and we agree that I will call in for a chat as I walk home. Once again, and as often stated in this journal, the people that I know rally round and prop me up. I don’t drink any of the whiskey.
Saturday is a blurry day of being over-tired and stressed. It’s also freezing cold and wet. At dawn, I go into the garden and shout a ‘non-school’ word very loudly; the cat is perturbed. I speak to the LEJOG walkers, and ask them if I should trust the London team? They said that they do. And they give me the surgeon’s e-mail address. Later, I send an email to the surgeon. I think it’s polite enough? I ask for a call as soon as possible, so that I can understand what is going on.
Sunday is a beautiful spring day, and we pack flasks and food and walk into Lorna Doone country; the area on the Devon/Somerset border where the rivers tumble from the moorland to the sea through wooded coombes. It’s a tonic but I am so tired. I think the stress has sucked the energy out of me. And I think the cancer is starting to make itself known. My stomach is sometimes really noisy and the winds are beginning to carry a bit of moisture. Panty liners are now part of my wardrobe.
Later on Sunday, I speak with other friends and another son. One friend is part of the ‘Operation Picnic Hamper’ team; the amazing people who are ready to help if things head south and I don’t stay above the turf. I know that I am on a ‘sticky wicket’, and I am blessed with the support of so many great people, and being able to plan for the quite probable with some of them is more helpful than I can describe.
Our eldest son is getting married next year, can I stay top-side, and fit enough to see this? They have chosen to have their wedding close to our home; in the beautiful village of Dunster, where all our children went to school, and where I have worked for most of the last 26 years.
And today? I listened to the dawn chorus in the garden, with a cat who appears to have forgiven me. I went to the gym to carry on with the pre-operation fitness campaign and I have managed to talk with two people, one in London and one in Taunton. It was a struggle to speak with a human in London (insert own rude comment about our capital city!) but a secretary phoned me back and we are rebooking Tuesday’s face to face meeting with the surgeon as a video call. And Taunton’s cardiology team have me booked in with a consultant on Wednesday.
The London secretary promised to get someone to call me to explain Friday’s cancellation and I am waiting for that call and for the Taunton colorectal team to call.
I want to say that I feel quite positive now. But positive is not quite the right word? I think because I have spoken to some people today and because some action is going to happen, I don’t feel quite so in-limbo. The human capacity for getting on with things and bouncing back is quite amazing.
Objectively, my situation is serious and unclear. We don’t know whether my heart condition will prevent surgery; we don’t know whether a heart procedure before the cancer operation may be the way forward; we don’t know how much worse my chances are because I have signet ring cells, the 1% club! And I’m always happy to be up early and active in the first light of the day, it’s so much better than lying in bed worrying. I am not alone, and I am OK.
And a quick update at 1pm. The senior nurse on the London team has called. The most likely way forward is for me to have my heart valve repaired prior to the cancer surgery. The anesthetist wants my heart as strong as possible to cope with 15 hours of surgery and a likely 20 litres of fluid going in. The nurse acknowledged that the ball had been dropped and that she would ensure that lessons are learned from my experience. Her candor was reassuring.
29 April 2024
*ah my youth…at least one shandy was consumed. And there may have been pork scratchings
