First Blood

Day one of treatment is finally here. I didn’t sleep much last night. A bit of nerves and, oddly perhaps, excitement. Perhaps just on account of finally reaching first base ten weeks after diagnosis. My experience last time I had cancer was so much simpler but I get that this is complex and I have found a place in my heart and my head where I can pretend I am a patient and understanding person (whilst quietly raging underneath). I have put my own rage in a soundproof box.

Today was a bit more dramatic than it needed to be. I learnt three lessons. 1) Don’t book a holiday or travel immediately after an appointment. Especially if it involves coordinating four children to arrive promptly at a station. I left 6 hours. You’d think that’d be enough but apparently not. 2) Take food. They were kind enough to bring sandwiches round the chemo ward but as I don’t eat wheat no good. They thought something was wrong with me as my heart rate and blood pressure were so low but I just couldn’t escape the waiting rooms to find food and didn’t dare miss my name being called. Plus my resting heart rate is 55-60 and I’m proud of that. 3) Always take spare knickers! Not for any untoward reason. Last time they kept me in overnight just for fun. This time they stabbed me in the stomach with a giant needle and accidentally hit a blood vessel. It was half an hour before I noticed I was bleeding out and stood up to go for my blood test only to discover my trousers were soaked from my bleeding belly. As I put my hands on them to see if my water bottle had leaked I realised I was covered in blood. It was like a scene from Carrie or Macbeth. I was so confused as I said ‘nurse?’ and staggered into phlebotomy like the walking dead. Really unnecessarily dramatic. And on the Issey Miyake trousers!! (Real not fake).

And so the magic pill regime has begun. Well only one of them actually as there were not enough senior doctors to sign off the hard stuff. Next week. The little problems of the NHS and 90 minute waits and come in next week because someone is off ill etc etc are to be borne. The drugs will ramp up over the next few weeks. Targeted therapies. Bone infusions. Today’s worry was that they seem to have found a lesion somewhere else on my spine S1 not T12 which no one has mentioned before and is miles away from the one they saw on the PET scan. I’m not sure that the very junior doctor I saw was actually correct as I’ve been told a dozen times it’s on my thoracic spine higher up so will check next time with someone more sensible. Also he said the CT scan showed lesionS. They may be non cancerous. Just age related disintegration but the CT scan can’t distinguish. But we did a PET scan? I wasn’t getting anywhere with him and he was like a bot so I gave up. Just give me the damn pills kid. And last time there was talk of noduleS on my lungs. They keep saying oh don’t worry about that other stuff, it’s nothing but it is likely it’s something. Amazing how you can get used to what you know and you can handle it. Five tumours in five places. Sure no problem. But a tiny change might tip me over the edge. The phrase ‘riddled with it’ kept coming to me as I was getting used to the diagnosis. Are there more nasties lining up behind them? I wasn’t prepared for that. I’ve come to associate Charing Cross with nasty surprises. When I was (mistakenly) with the lung team at St Mary’s in Paddington it almost felt like an offence to be told I was dying in the same hospital where my twins were born. Where we held on to their tiny lives by a thread for the first few precarious weeks when they came out two months early. So today I chose to put the ‘maybe’ tumours in one of my little steel boxes for a week until I see the consultant and they can jump about and yell all they like. Close the air holes. Turn it off. Shh. I’m going on holiday and I am a fabulous magical unicorn and it’s all going to be ok. Shhhhhhhhhh. You’d be surprised how things work out.

I can already feel my hormones going crazy. Hot and cold with a weird wobbly high. I feel a bit vague and faint and words swim before my eyes. By the time I left the hospital I wasn’t really processing and just stared at their forms. God knows what I consented to. And I imagine I can feel each tumour speaking to me. Whingeing. Each time a tumour aches I speak to it like a sick child and say sympathetically ‘I know’ and give it a little pat. Shh. It’ll be alright. I like my kind voice. I don’t hear it in my head that often. I tend to save it for others.

The chemotherapy ward shocked me today as I passed through for my injection. I’ve sat in plenty with my mum over the years but the rooms were smaller and friendly in scale. At this big London hospital my jaw dropped at the long lines of tired looking people in endless rows of comfy chairs wired up to machines having clear liquids pumped into them. An industrialised vision of our slow collective death stretching out to infinity. It’s one of the saddest things I ever saw. I try to stay jolly and make bad jokes at every opportunity. It’s probably inappropriate. The nurses were laughing at me today because as I was bleeding out from the injection site and trying not to faint I kept saying ‘I’m ok!’. I feel like Mickey 17. Each day I die a little. ‘I’m ok!!!’ I shout as they push me down the rubbish shute.

On a calm train to Cornwall now after a mad rush to get through ECGs and pharmacy. Teenage children reading quietly on train. Husband driving down at the weekend. A big bed with a picture window overlooking the sea awaits. I plan to be very lazy and eat cornish pasties. And fish and chips. Write a bit in the mornings. Read. Watch movies. And walk by the sea. That is all.