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  • Sudha

Relapse in 2019

Sunday 24th March 2019. Paul's parents were visiting us and we were having a lovely relaxed weekend. Paul wanted to go for a quick walk - just with me - and we walked a hundred yards outside the house and sat on the bench by the village green. He was tearful and said 'It is back'. 'What do you mean it is back?' I shot back at him. He said he had pain in his stomach and more importantly, he'd had night sweats the previous night.

We cried - as much as we could, without making it too obvious, in case neighbours' curtains were twitching. I can't remember much, but I do remember believing in his self-diagnosis as he had barely touched the afternoon tea he and I had on Mother's Day at the local garden centre. His appetite was one of the first things to go I noticed when he first had the cancer.

I switched into a robotic practical mode - deciding what best to do next. His focus was solely on his parents and our boys - not to tell them anything. I insisted that he ring UCLH first thing on Monday. He was worried about his work commitments. FFS I thought - typical Paul. We talked about all the symptoms and we compared them to the first time. We convinced ourselves that we have caught it early this time, as he was still cycling with Doug every Sunday and running 3 times a week his usual 10 / 20 miles.

After 2-3 weeks of blood tests, drips, overnight stays and scans, our world was turned upside down when the consultant confirmed that his NHL had relapsed; the worst of it all was when she said that it is stage 4A. It had spread everywhere and none of the chemo will work.

I must admit that from then on, it is a blur for me. I can probably look at our family google calendar and write down all the various hospital visits, treatments and the downs; there were no ups. I remember endless visits to the hospital, endless conversations with the doctors and nurse, trying to find out more; trying to hold on to anything positive that they were saying; trying to be happy; trying desperately to hold on to my dreams; my dreams of growing old with Paul; my dreams of being this amazing happy family of 4 for ever and ever till we got old.

We were trying to work out various statistics we'd either heard from the doctors or read somewhere; if the cancer came back within 2 years, the success rate wasn't great. We convinced ourselves that as it has come back more than 2 years later, he will be ok. Everyone said UCLH is one of the best hospitals in the world and Paul is in the safest hands. If anyone can cure the cancer, it is them.

Paul's treatment plans were changing at an insane rate. A new type of chemo was tried; the PET scan after the chemo showed that it hadn't worked to the extent the doctors had hoped for. Then stem cell transplant was touted. By the time a donor was found and the formalities completed, the cancer had spread to such an extent it made the stem cell transplant redundant.

Paul was running out of time.

People praise the NHS. And, yes, it is an incredible institution with some amazing selfless staff. But, there are a few who are arrogant and offhanded in the way they treat some patients. We had the misfortune of having a conversation with one of them. Paul was broken when this consultant left his bedside. We held on to the possibility that there are new treatments that are always evolving and that worst case, he will have to go on a trial. We refused to accept what this consultant had strongly alluded to - that Paul was running out of options.

Usually, I'm a glass half empty person and tend to look at the worst case scenario. But in this situation, not ONCE did I ever think that Paul will go - because we hadn't exhausted all the treatment options left to try. The last straw in my mind was going on a trial. He was nowhere near that, right? So, I threw myself at making sure I spent as much as time as possible in the hospital with Paul, while working and taking care of the boys.

August 2019 - Enter CAR-T - the brand new treatment available on the NHS to selected patients for whom all other treatments had failed. Paul's consultant had to go to a national panel to get approval for this treatment which cost £300k. All the conversations with consultants and nurses had made us feel that this was it - they won't be spending this amount of money if Paul didn't have a good chance of beating the cancer.

Friday, 16th August 2019 - the T-cells were extracted and will take 5-6 to be genetically modified before being reintroduced into Paul's blood stream for them to do their magic. The magic is that the T cells were modified to specifically target just the cancer cells and destroy them.

While waiting for the T-cells to come back modified, as Paul's cancer was spreading aggressively, he was given a bridging chemo to keep the cancer in check. I have never seen my strong, brave and funny husband suffer as much as he did after this chemo. He had to carry a backpack with the various bags of chemicals that automatically pumped him with the treatment - even while he was asleep; well, trying to sleep. His mouth felt like they were full of razor blades; he couldn't eat or drink as it was too painful. He suffered, but, suffered quietly. I remember his friends from work came to see him and met him at a local pub for a drink. He took a lot of painkillers before meeting them so that he could spend a couple of hours with them trying to be his usual self.

Despite all the pain, he managed to walk to Regent's Park which is about 2 miles from UCL whenever he could. He loved walking. He felt free.

Thursday, 3rd October 2019 - a date that will forever be etched in my brain. It was the beginning of the end. The day when Paul received the genetically modified T-cells. Day 0 of the CAR-T treatment.

Wednesday 4th December 2019, he was gone. He was free of all the pain and suffering; free of all the undignified hospital treatments. He left behind his legacy; a legacy of passion for conservation, protecting the environment, love of nature, and most of all, pure love for his boys.

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Nov 15, 2020

Oh Sudha, that must've been so, so hard to write. What an awful catalogue of events. I never knew all the details. Every single day must be a struggle. Sending the biggest of virtual hugs until we can hug again xx

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