Treatement Diary Part 3 (Obinutuzumab and Venetoclax) - The Good, The Bad and the Unexpected!

It’s safe to say that 2022 didn’t start in the way that I’d expected, nor did it have the optimism often associated with the coming of a new year. The first day of January found me in A and E having a full health check, following four days of feeling really rough. A few days after Christmas I started to feel some familiar signs of anxiety, which I have suffered with from time to time – a racing heartbeat, a slightly tight chest, loss of appetite, exhaustion and a slight feeling of detachment. Usually this only lasts a few hours and I’m able to sleep it off, but after four days I was still feeling really unwell and decided I needed to call someone for help. Thankfully I was able to contact the Oncology Bleepholder at the hospital, who suggested A and E, mainly to get my heart checked. Anxiety attacks for me are often very physical, such that it’s almost impossible to imagine that there isn’t a physical reason for feeling so bad. Thankfully all checks (including the inevitable Covid test) were fine, which was reassuring, but left me with the knowledge that it really was the result of an anxiety attack. I’ve read extensively around the subject and I’m a great advocate of Mindfulness practice, so there followed a week of self-care : walking more in the countryside, starting to eat small regular meals to increase my appetite and raise my blood sugar, putting some mindfulness principles into action, concentrating on my breathing, spending less time on social media, reading uplifting texts, listening to worship music etc. Basically filling myself with the good stuff!

I’m so grateful that things soon improved and I was able to return to fully enjoying my life again, but inevitably this time made me reflect on the combination of things which had led to me being unwell. I started looking back on 2021, a bit of a rollercoaster year in many ways, The Good, The Bad and The Unexpected!

2021 began with the knowledge that I would be starting a year of treatment for Blood Cancer. A consultation in February confirmed this and in the middle of April I began the first of six cycles of Obinutuzumab infusions. I’ve written about this in greater detail in another article if anyone’s interested in the details, but safe to say it was an intense time. Generally, after an initial blip, I tolerated it well and at the end of the first cycle I added daily Venetoclax tablets, which I would be taking for a full twelve monthly cycles. Prior to treatment I hadn’t been on medication of any kind (apart from occasional painkillers for headaches etc.) so the biggest issue for me was getting used to the sheer volume of medication. Nevertheless I tolerated it all pretty well and the results were really encouraging, both in terms of my blood results and the reduction in swollen lymph nodes.

In August, five months into treatment, my consultant ordered an extra blood test, checking for Minimum Residual Disease (MRD) status. This looks at a set number of blood cells to see if cancer cells can still be detected. Basically it is a really good way to assess the effectiveness of cancer treatment. I had a routine consultation at the beginning of the month and discovered that amazingly I was MRD negative. That means that no cancer cells were detected in the sample tested. Of course there may still have been a small number still in my blood or bone marrow, but they were too few to show up in the testing. We never talk about cure in Chronic Lymphocytic Leukaemia (CLL) but having a negative MRD test so early in a year of treatment was thrilling and made all the challenges of the previous few months worthwhile. My blood results mostly returned to normal range, apart from my platelets, which dropped dramatically after each infusion (resulting in even more bruising than normal). However, they were monitored closely and sprung back quickly following my final infusion on the last day of August. Really good news.

That final day receiving intravenous treatment at the hospital was a strangely emotional one. Although each day I had spent in that reclining purple chair hooked up to the drip through a cannula in my hand had been exhausting, there was also a sense of familiarity.

I had got to know several of the nurses and other staff at the treatment centre really well. One particular nurse had taken care of me on day one when I had a reaction to the drug. She was there on the last day too and I was careful to tearfully thank her again for her care. Being in a room with other cancer patients receiving their treatment, I had always felt a sense of solidarity and not being alone, although there were rarely in-depth conversations. Most of us were just reading or dozing, waiting for the long day to be finished, hopefully without any adverse reactions. But during that time Bexley Wing became familiar and part of my life. It was strange for that period to be finished. Many cancer patients will say that they found the end of treatment a strange mix of emotions. Equally “Remission” (or MRD negative status) can bring with it a mixture of emotions too. Elation that the drugs are doing such a great job, gratefulness for amazing research and a team who were right at the front of CLL treatment, but also a weird sense of anti-climax. There were still 6 months of tablets to be taken, more consultations and blood tests, both in the near and the distant future. Nevertheless my overall emotion was one of thankfulness.

As I continued with the tablets I was to take for the remainder of the year of treatment, I became increasingly plagued by indigestion, not terrible but uncomfortable nevertheless. It’s not uncommon with these strong medications and my team quickly prescribed a stomach tablet which helps to reduce the production of acid. As August progressed I started having added intestinal problems (I won’t go into the gory details!) Because I’d started new medication that month, the first possible solution was to stop the new tablet to see if that was causing the problem. Nothing changed. Then my consultant suggested a break from taking my main cancer tablets (Venetoclax) as my symptoms were very typical side effects. I was dubious as I’d been on the tablets for five months, but it was worth a try. Again nothing changed. There then followed a large number of tests for various bacteria, inflammation etc. All came back negative. Anyone with a cancer diagnosis of any kind will tell you that as soon as they have any symptoms at all, their mind automatically goes to the worst case scenario of another cancer. I was no exception – my mind had already gone down the colonoscopy, diagnosis, surgery and treatment route! At this stage I had been unwell for a long time and it had started to dominate my life. Thankfully my diligent consultant ordered one final test for Campylobacter “just to rule it out, as I’ve seen a couple of cases recently”. A phone call a few days later amazingly confirmed a positive result. I’d basically had food poisoning for about 3 months! I remember actually being relieved and grateful that something had been found (that wasn’t cancer) and that it could be treated. A week of antibiotics and things were almost back to normal. After a really challenging three months it was time to enjoy the positive aspects of feeling stronger and having a bit more energy again.

Of course all of this was against the backdrop of Covid. When we all locked down for the first time in March 2020 I’m sure most of us presumed that things would be back to some form of normality by November 2021. Sadly Omicron had other ideas. As the numbers rose sharply and the information emerged about how incredibly infectious this new variant was, it became obvious that we were heading into another difficult winter. As I am classed as Clinically Extremely Vulnerable (CEV) I started to be extra vigilant when out and about and more conscious about who I was meeting again. I am a people person so this has always been a challenge for me. Everything that really nourishes my wellbeing involves social contact – going to church, having coffee or a meal with friends, being involved with choirs and other music groups, ballroom dancing, swimming etc. I’m blessed to live with my husband in a pretty village, but I still miss wider socialising.

During December I restarted my Venetoclax tablets and continued regular blood tests and consultations. In October I’d been pleased to be offered a third covid vaccination due to my CEV status. I had been tested for antibodies following my first two vaccines and had been pleased to learn I had some! Unfortunately cancer treatment is known to wipe them out, so I wasn’t too surprised, if a little disappointed, to discover that I had no antibodies following my third vaccine. I’m sure this contributed to those few days of anxiety that hit me between Christmas and New Year. We had also dropped in on friends in the village on Christmas Eve, one of whom tested positive two days later. I was reading online more and more examples of people testing positive and started to feel a little out of control.

I heard a brilliant sermon recently about the fact that we often recognise physical signs that something is not quite right with our bodies, but we can ignore the same kind of signs with our spiritual health. I think the same is true for mental health. For me, signs that everything isn’t as it should be can be really subtle. I start to get a bit more obsessive about searching through social media or watching the news, I start overthinking everything and constantly self-checking how I’m feeling, worrying about small things which would usually pass without me dwelling on them, and so on. A combination of treatment, intestinal issues, finding out about the lack of antibodies, Omicron and more people testing positive, not to mention Christmas preparations; all of these things added up.

So we come full circle to the beginning of 2022. I can honestly say that after The Good The Bad and The Unexpected of 2021, I am feeling hopeful. Hope is such an important thing. In spite of all the things I miss being able to do, I choose to reframe that regret into looking forward to the day when I can restart (cautiously and carefully) a few of the activities that enrich me. It may not be yet, but I believe it will come. I continue to try (not always successfully!) to feed myself with more of the good things that build me up and fewer of those which can subtly rob me of peace. I think it’s so important that we can identify the things that nourish rather than deplete us. For me that means cooking more and eating better, walking more, praying and worshipping more, practising being grateful daily, playing the piano more, speaking to friends more, taking care of myself more.

I came across a fabulous quote in a small book my daughter bought me for Christmas called “The Little Book of Inner Peace”. It goes as follows:

One day a Native American grandfather was talking to his grandson. He said “There are two wolves fighting inside all of us – the wolf of fear and hate, and the wolf of love and compassion.” The grandson listened, then looked up at his grandfather and asked, “which one will win?” The grandfather replied, “The one we feed.”