It’s been nearly a year since I was last up writing before dawn; way back in a different epoch, ‘The Waiting Game’ described a sleepless night and seeing in the very early June dawn on Minehead seafront. Twenty plus entries and 11 months later and nothing has changed, and everything has changed. And, like then, the rain is pouring down!
It’s Thursday and since Monday, a lot has happened. 48 hours of my emotions going through the wringer.
On Tuesday morning, we had a video consultation with the surgeon. This was a scheduled post pre-op appointment, where I expected us to be talking about the admission process and the dates that I would be undergoing the life-altering, body-transforming Total Pelvic Extermination. The self-sanctioned vandalisation of my body aimed at removing the chemo and radio resistant cancer. Our third and last lifeline.
The surgeon was accompanied by the senior nurse who had called me on Friday and Monday, and by the anaesthetist who had cancelled the operation because of my heart’s ‘severe mitral valve regurgitation’. In ‘Taking Stock’, I outlined this heart issue and described it as very much the junior partner, a amuse bouche to the main course of cancer. Well, it seems to have taken exception to this second billing and thrown all of it’s toys out of the pram.
The anaesthetist explained that when they were reviewing my information, they were ticking all the positive boxes. I appeared to be an ideal candidate for this major surgery. And then, the heart. They gave me a number, the volume of blood that washes back the wrong way when my heart beats. The number immediately disappears out of my memory. But it is significant. They typically use 20 litres of fluid during this 15 hour operation. The patients heart needs to be pumping efficiently.
‘I think we could lose you’.
The anaesthetist will not sanction the cancer surgery unless my heart is fixed. They have already contacted my local cardiology team, who diagnosed the heart condition last year. The Taunton cardiology consultant’s initial response was that they will not consider me for surgery. However, they do fast tract me for a re-examination; I am bumped forward on the waiting list by 8 months, from January 2025 to tomorrow. And the London team are requesting a second opinion from The Royal Brompton and Harefield, a specialist heart hospital.
The surgery team can not tell me what kind of surgery I will need or give me any indication of time scales. That is the cardiologist’s call.
And
The surgeon tells us that this will cause a delay and that post heart surgery (if it happens), I will need an unknown period of recovery and they will need to do another round of scans to check on how the cancer is doing. So far, it has been disdainful to the NHS’s best efforts to kill it. Slowly increasing in size, brushing off the toxins and radiation without concern. The same treatments that have made me sick, and burnt, and left me with no feeling in my toes and stole my holiday to the Scottish mountains. And, I am of the wrong generation to fully appreciate no longer having pubic hair.
And
If, at that future post-heart surgery date, the cancer looks like it is growing steadily, the surgeon will not want to do the surgery.
‘We will wreck your body and before you have got through the recovery, the cancer could be back’
They will not subject a patient to the level of surgical intervention that TPE entails unless they are as certain as they can be that they will be buying the patient a significant period of time with a good quality of life.
I ask if now is the time to organise doing some things that I want to do? They all nod with just a little too much enthusiasm.
They say that we now need to wait on the two cardiology teams. There does not seem to be much more to say. Everyone is very serious. The senior nurse says she will phone me on Thursday to update me.
On Wednesday, I take myself to the gym for an early work out. Being as fit as possible will be helpful with whatever happens next (I will be one buff carcase!) and somewhere deep in me there is a thread of steel that won’t break just yet. I head towards Taunton early so that I can visit an injured friend. A fall has added a steel bar to the inside of his leg.
At Musgrove, I meet a Macmillan support worker and my ‘named’ nurse. They listen and the nurse walks me to the Hope Centre to get information on counselling services. She says that there may be some non-surgical options that don’t involve the drugs that have previously failed. I have a pre-booked Oncology consultation next week, so we can explore more then. They are quiet and serious.
Then to cardiology. In quick succession, an electrocardiogram, blood pressure, height and weight check, and an echocardiogram. One of the technicians is from a farm near home, I’ve said it before, Exmoor is a small World.
Then a cardiology registrar meets with me. He does a few physical checks and asks a few questions, and then the real substance.
I have a really good heart with a really rubbish mitral valve. My heart pumps gazillions of litres of blood. It’s a super-dooper athlete’s heart. But the valve does not get anywhere near closing, and it’s perforated. He shows me a film of my heart and I can see the valve failing to close and blood going in every direction. 65% of the blood washes backwards.
65%
And I have no apparent symptoms. The surgical option is not some clever little clip inserted via a vein. It’s ribcage spreading, open-heart surgery. With a long recovery time and potential serious complications. Their opinion is that because I am not symptomatic and so very fit, the safer cardiac option is not to do surgery. I am now on their books for regular checks. They are unaware of any other approach that Brompton and Harefield may suggest and agree that a second opinion will be useful. The registrar is aware that they are not sharing good news. I reassure them that I am quite used to this now. And, counterintuitively, at that moment I feel calm. Relieved? Or maybe, I have used up my stress reserves?
The options to treat my cancer are nearly used up. Just a day out in London for another heart check and we may be done.
I get a coffee and catch the bus back to the park and ride.
I retune the car radio from news to music, ‘Live and Let Die’ is playing, uhm…Followed by Elton’s ‘I guess that’s why they call it the blues’. I crank the volume up and sing along, just a little too loudly…
…Laughin’ like children, living like lovers, rollin’ like thunder…
1st May 2024
