CAR-T - the beginning of the end

I promised myself that I will write about the last 2 months of Paul's life when I'm ready. I realised today that I will never be fully ready. But I need to write it down to fully grieve. It will be Paul's first anniversary in less than 2 weeks and I'm aware of how angry, tetchy and irritable the 3 of us are - especially Harry. He's silently grieving the only way he knows how - by avoiding the subject all together. He's immersed himself in GCSE revision.

3rd October 2019 (Day 0) was when Paul received the genetically modified T cells - the cells that were supposed to target and destroy the cancer cells. In the previous 2 months we had several meetings with the doctors about the treatment. We were told the success rate was 33%; 1 in 3. The odds were against Paul and so the next question was 'What if it fails and Paul is not that 1 in 3?'. We never got a clear answer as this was the last resort. But we were led to believe that there are always new trials coming and that he's likely to be on one of them. There were no statistics available, as it was very new. We were never EVER told there was a serious possibility the treatment itself could be fatal - except in the consent form Paul had to sign. This was no different to the consent forms you'd sign for any minor operation.

One thing was very clearly explained to us. The horrendous side effect called neurotoxicity - brain damage for those with no medical background. This is something that they expected and in fact, welcomed, as it meant the CAR-T treatment was working. They were going to be checking Paul's vitals every few hours and so as soon as they could see signs of neurotoxicity, they would pump him with steroids to reverse it. Once a day, the medical team will run standard cognitive tests - asking Paul to identify 3 objects, write down a sentence, answer 3 random easy questions and count backwards in 10s. They expected the neurotoxicity to rear its ugly head between days 7 and 10.

I remember leaving home at 6 every morning, driving down the M1 with anticipation and eagerness for any sign of this wretched neurotoxicity. Just as I passed junction 6A for the M25, there'd be a sign saying, 'X mins to the North Circular'. That was a good indication of what the traffic would be like and whether I would be by Paul's bedside by 7:30 (Even now when I drive down the M1 to the boys' school, that sign awakens a sickening feeling down the pit of my stomach). I'd park and half-run to the hospital hoping I'd be able to recognise some subtle change before the medical team could.

It came as expected around day 7. I was elated. Paul's handwriting deteriorated (it wasn't great to start with!!). He didn't recognise objects around him. The team pumped him with steroids and within 3 days there were signs of reversal of the neurotoxicity. He was kept under observation in the hospital and every day he was getting more and more impatient. He wanted to come home. Despite signs of normality, the medical team continued with the daily cognitive tests. His sentences became 'I want to go home'. Eventually, reluctantly, they discharged him with very strict instructions of what to do and what not to do. I wasn't keen and I made him promise me in front of the medical team that he won't be doing anything silly such as DIY, gardening, running, cycling etc.

I can't remember the exact dates, but, he came home end of October and he was so happy. He was weak but happy. A few days later, he had a fall at home. His legs had given in without warning. One of our friends, Julie who is a retired GP rushed to administer first aid. Paul developed a temperature. A tell-tale sign of the neurotoxicity returning. I drove him to the local hospital where they'd never heard of CAR-T. He was kept overnight and was rushed under blues and twos to UCLH the next morning.

Neurotoxicity had come back. We didn't know that this was possible. The medical team were none the wiser. They were reacting to something they weren't familiar with. Paul got worse and the doctors struggled to reverse the brain damage. He needed round the clock care as he couldn't understand why he couldn't stand up and walk. The hospital couldn't guarantee nighttime care. I stayed at the hospital days on end while our friends in the village took care of the boys. When I desperately needed sleep and wanted to spend some time with the boys, Clare stayed the night and took care of Paul. Paul's brother also stayed with Paul. We all mucked in along with the nurses to make sure Paul had eyes on him 24x7. Despite this he had 3 more falls at the hospital.

All this time my faith was strong. My faith in the treatment, in the medical team, in the system and most importantly, my Catholic faith. I went to the hospital chapel everyday to pray. My parents must have spent a small fortune lighting virtual candles at St Lourdes. My sister even made a pact with God - if you don't save Paul machaan, I will never step inside a church again.

My dad assured me that this treatment had another name - the Lazarus treatment - one almost has to die before the treatment is successful. So, we didn't lose faith. We kept hoping that things will start to reverse. But, it didn't.

Despite this, the doctors kept running their daily cognitive tests. The last week of November, a neurologist visited and did some tests. Just as he left, he asked Paul to write a sentence and this is what he wrote:

The neurologist said he needed the paper for hospital records but asked me to take a photo of it. These are Paul's last words.

A couple of days later, he had a cardiac arrest and was rushed to ITU. I was desperate for answers. Naively I still had hopes that he would recover, albeit slowly. I lost count of the number of conversations I had with the doctors and specialists - all the while desperately looking for the answer to one question - When will I get my husband back? A week before Paul went, this is the conversation I had with the main consultant.

Doctor: It isn't looking good, Sudha

Me: What do you mean? You mean, he isn't going to get better?

Doctor: No. Sorry. We did a scan and the cancer has spread. You don't have a lot of time left.

Me: You mean months? (I was making a mental note of taking Paul back home and having round the clock care)

Doctor: No.

Me: You mean weeks? (I can still feel the blood starting to drain from my body)

Doctor: Not really.

Me: After Christmas?

Doctor: No.

Me: You mean days?

Doctor: Yes. We can't be sure, but it is best to get your loved ones to come and see Paul.

If there was one moment in the entire treatment I had to pick to change, it would be this one. I fully understand that doctors are in a very difficult position when telling someone their loved one isn't going to make it. And it has to be done sensitively. But, please don't drip feed information and make us join the dots. That is cruel. I'd rather she sat me down and said to me in sympathetic language that there is no chance of survival.

The boys came straightaway. This was the first time I felt I needed support. I couldn't do this on my own anymore. I needed someone to take care of me, while I struggled to make sense. I asked Clare to be with me. I was selfish but I needed Paul (the irony wasn't lost on me) and if Paul wasn't able to be there, Clare will have to do. I now realise that I didn't think much about how this will affect Clare, who has a demanding job, elderly parents to look after and many friends and family who leaned on her.

Clare is my guardian angel. The 4 of us stayed with Paul in that tiny little ITU room for 5 days. We slept on chairs. I'd booked an Airbnb nearby which we never used, because no one wanted to leave Paul's bedside.

Despite all this trauma of watching Paul drift away in front of us, Harry was desperate to try anything. He said he had a friend who can source CBD oil and that he'd heard of its miraculous effects. I could hear Harry making these frantic phone calls and asking me for money to go to Watford to buy cannabis oil. I wanted to say yes to him (maybe deep down I was also hoping for a miracle), but I told Harry that it may interfere with the Paul's medications.

Remember I mentioned my strong Catholic faith? It died that day. If truly there is a God, he would not have let my children suffer the way they suffered that week and continue to suffer. Paul would not have died in this prolonged, painful and traumatic way. Not Paul, who was a good human being; whose moral compass was stronger than many Christians' I know, including mine.

We said our goodbyes many times over to Paul and we kissed him one last time at 2:45AM on Wednesday 4th December 2019 and made our way back to Gaddesden Row without Paul. The one place where he truly felt he belonged and felt complete.