God’s Waiting Room

I’m really good at waiting. I can amuse myself for hours writing and reading. People watching. I’ve learnt most people’s names in the waiting room by now from sitting and listening to them being called and greeted by the nurses. Stalker. You all help me dear readers as I feel your presence and I feel like I have you with me when I write. I’m in my gym gear having actually made it to the gym this morning but it feels like I have subconsciously worn it on purpose to stand out in the waiting room. I arrogantly feel like I do not belong here. I always sit near the door like I might edge myself out altogether. It’s an unkind thought because many of the people in this waiting room may have been coming for years. A few are in wheelchairs, several with head coverings. Some being assisted by friends and porters. I’m younger than average I’d say but it’s hard to tell. The young ones tend to be men visiting the prostate consultant. My self awareness of being younger and fitter also reminds me that I may be coming here for years and look quite different after the next few (God willing). Maybe after a few cycles I’ll see someone strutting in like me, freshly diagnosed and I’ll see it for what it is. Denial.

A few days in Cornwall staring at the sea, being whipped by the wind and walking on the beach did me a world of good but it is just as good to be home. At the moment I do better in familiar surroundings despite my urge to roam. There’s something about starting new drugs which feels precarious. When I am away I overanalyse every side effect and think I’m about to drop dead of some freak occurrence. I have to check where the nearest hospital is with an A&E. I have also been told to be careful about falling because my cancer ridden bones won’t heal properly. Cross country skiing, our family sport, is not recommended, for instance. The husband insists this is because cross country skiing is misunderstood and is really quite gentle. I remind him that I managed to clip a tree, do a somersault and land on my head at speed in Finland over New Year. Perhaps he simply underestimates just how poorly coordinated I am (and how superhuman he is). Someone who skis round the arctic for fun (a 230km race in 21 hours last month for a laugh) cannot understand the world of mortals. I mean how do you keep up with that. Falling over is something I don’t think about too much in the city but am wary of doing things I would have considered normal four months ago. Even on the beach I get tempted to join the kids clambering over rocks and up cliffs. I had been longing to go away and badly needed to sleep and process and get fresh air and some sun. To come down off my slightly adrenalised and defiant Do Everything Now high. I booked us a spectacular house with a view so that I could lie in my four poster Balinese bed dramatically and feel sorry for myself. That worked. The kids couldn’t quite believe their luck and we pretended we were a tidy family without clutter for five days. We agreed that we would be crap at having our own holiday home as it would be just as messy and broken as our home. An overnight stop in Bristol at my half Chinese ‘sister’ Sarah’s did us all good and I felt wrapped up in the warm love of her family and their wonderful (tidy) home and enjoyed seeing the children getting on.

But coming back home feels right. I want to be here right now to get on with treatment and be near the hospital. It’s taken long enough to be in this position, ready to embark on the cancer drugs I will be on…for the rest of my life. I don’t think I’ve said that out loud yet. There’s a thing.

The new regime is pretty fierce. I had ambitious plans to travel when I was first diagnosed. There are so many places I haven’t seen and one of my first thoughts was for all the places I still want to visit. A sort of preemptive grief at all the things I haven’t seen or done yet. But the realisation is dawning that, for a while at least, it will have to be short trips as I need to be in hospital at least once every two weeks for a while. Since January it has been two or three appointments a week with scans and bloods and this and that. I sometimes think people assume that I am sitting around having coffee all day or painting happily in my studio but being a cancer patient is nearly a full time job at the moment. Poor me. Haha. I do sit around in cafes and paint in my studio in between by the way.

Two hours in the waiting room so far. I hear on the grapevine that my consultant (the fierce one who I once met for 5 minutes) is off with family issues. I am reminded that doctors get ill and have families who get ill too. The impact on the waiting room of one missing consultant is huge. The staff here are great but some of the doctors or registrars seem quite new to the job and are often corrected by the nurses and senior consultants when they put in an appearance. I feel more sensitive to the politics in the room now I’m older and I feel a bit sorry for the young ones. They have to learn somewhere and are smart enough to say ‘I don’t know’ when pressed. I do ask a lot of questions. You have to be on top of your own notes in a big hospital. So far I have had to remind them that I have lymphedema in the left arm, insist that I had no cancer in my lymph nodes last time when a very senior consultant told me I did (check your notes), which side various tumours are etc etc and you have to be quite firm and stand your ground when you know you are right. I mustn’t get in the habit of being too assertive though. There is only one male consultant I insist uses my title. (‘You can call me Professor or Doctor I really don’t mind. You can choose. But it’s not Miss’ 🙂). The nurses on the other hand are all totally amazing. Upbeat, super kind, they remember details and greet everyone like old friends and they never forget how hard it must be for their patients. As a result all the patients are calm and well behaved. Waiting patiently even at two hours. I have become anaesthetised to waiting. I bring my sketchbook and my reading and kickback. This time I have brought my emergency bag complete with earplugs (in case of Joan), knickers (in case of spontaneous eruptions of blood from puncture wounds), eye mask, headphones, deodorant, PJs, kitchen sink…but it is not needed.

The news, when I finally get in the consulting room, is that the young doctor last week was not wrong. I do indeed have another tumour on my spine. S1 and T12. He was just the first to bother mentioning it because it is small. Perhaps the other doctors who saw me after the spinal MRI thought it not worth mentioning. Oh yes and another one on my clavicle. I enquired as to whether the results were in from the shoulder CT scan that I traipsed over to Wembley for and that everyone seems to have forgotten about. ‘Oh yes hang on let’s see. Oh yes, oh dear. There is another one.’ Oh and by the way it says you have ‘Marked supraspinatus tendinopathy and moderate subacromial bursitis on your shoulder and arm. That’ll be where you hit the tree! Oh and we have to put you on a different drug because of the inverse t-wave on your heart last time you had an ECG and did you know you have this weird extra blah blah which causes (whaat?) and I’ve ordered an electrocardioblah and and never mind’….At this point I tune out and ask if I am a magical unicorn. Chuck me in the rubbish shute. Time for Angela 17.

So that’s 7. Seven tumours. Not 5. Seven. I got used to five though. Seven is quite different. There are moments in these consulting rooms when I feel the need to remind them to slow down. That some things hit harder than others. It’s the same treatment though she says. I say I know but this is news to me and it makes a difference to me. You said it is slow growing but this seems fast. The doctor says she can’t really say if this is a spread since the first PET scan in Feb while we’ve been faffing around losing time between lung departments and breast oncology. Or if it simply wasn’t picked up. Or if no one bothered to mention it. That is possible. Once you have quite a few no one else is really keeping track. I get it. We just have to start treatment. The number is not relevant to the course of action to the clinical team. I am sent to see the pharmacist, a nice young Asian man from the Midlands who ‘counsels me’ on the new drugs and just how close I will need to stay to loos and hospitals for a couple of months. They decided on a different drug. Abemaciclib because of the whatever is going on in my heart (oh so much – they don’t know the half of it). It’s only for unicorns apparently and it gives you unicorn poo. The unicorns will be frequent visitors apparently

And neutropenia. This is the biggie. Low white blood cell count in particular low neutrophil. If I get so much as a sore throat or a cough I have to take myself into hospital or I could end up with sepsis or renal failure. ‘Keep away from children if they have coughs and colds’. Hahaha try having three kids in school. They laugh at me when I ask if would be considered an unreasonable risk to be singing jazz in a room full of mouth breathers each week, or to be planning to go to my 30 year college reunion or doing an inaugural lecture to 250 people. And can I have a drink? The answer to all of those is yes be sensible but it’s ok. The drugs are to prolong your life and give you quality of life. You must not stop living they say. I am pleased with this outcome. I must not stop living. Good advice.

You can get used to anything. I keep counting them off like a mantra. Lung, lymph node, left hip socket, thoracic spine T12, S1 in the sacrum, clavicle, scapula. I repeat them to remember in case no one else does. My magnificent seven.