On Monday Hattie and I went to spend the day in Bristol with my sister Sally, and her family. It was a beautifully crisp, sunny day.
I had to pick up the NutriBullet I had previously forgotten, and maybe talk to her children, Dylan and Una about my diagnosis; both are still at Primary School. Sally and Steff were concerned about how best to do this, and how the children might react.
Although Sally was clear that both of them wanted me to talk to the children, they needed reassurance. It’s a difficult one; I have always been clear, in regard to how I talk to my children, that I would always be honest, talking in a way which was open and uncomplicated. My children have already had to deal with far more than most; they have been carers, but they have also been loved, and had security. All have become wonderfully strong, articulate and confident, whilst also remaining fragile.
We discussed the fact that most of us take a while to process information, especially bad news, with questions coming hours, and often days later.
In the afternoon, we picked the children up from school and took them into town to buy a hat. I’d decided that if I was going to lose all my hair, including eyelashes, I wanted to wear a hat, to keep my head warm, and to partially disguise my lack of facial coiffure. We had great fun trying on a variety of rather mad accoutrement. In the end I chose 3, which I could vary according to mood and occasion.
We talked after supper. I explained in a very similar way I had with my mum, my symptoms and investigations. I told them the diagnosis, and treatment; especially that I would be losing my hair and beard; that I would probably be feeling quite ill for a while. I would look different. Una told us she had a girl in her school who had no hair, because she has cancer.
Talking honestly and openly is the only way to deal with this. More than three decades of Nursing has taught me this. Watching how my patients deal with bowel, pancreatic or oral cancer working with Palliative Care teams; being at the bedside of patients whilst they die; witnessing the variety of death, I am always humbled and inspired by the way many with terminal illness, or life changing surgery deal with it. Assisting patients to have a ‘good death’, in the presence of their family, has always been something that has given me great professional satisfaction.
A couple of days later, whilst on a dog walk with his mum, Dylan told her he had been sad at school, thinking about me, and was she sad too? Sally said yes, she was. That she had spoken to his teacher, who was happy for Dylan to visit anytime he felt down, to talk. He had lost his father when he was 13.
At school, Sally was discussing my skydive with another mother, when Una piped up loudly, ‘ and he’s doing it with cancer!’
Number one of my bucket list, the skydive, was due to take place on Wednesday. As the day drew nearer my fear manifested in two relatively sleepless nights; my mind going into overdrive. I envisioned every conceivable thing that could happen, from being so scared I vomited in mid dive, hitting the instructor full in the face, to refusing to jump and clinging to the plane like a limpet. I couldn’t think rationally and couldn’t switch off. During the day I was walking around with that dread you feel in the pit of your stomach when you’ve been sent to see the Headmaster, or about to speak in front of an auditorium full of anonymous faces.
On the day I felt calm, only slight apprehension. The sky was grey, with ominous low cloud. I called the Skydive centre; I was told the poor visibility meant that jumping was unlikely, but that I could postpone… The thought of delaying the jump was not an option, so we decided to get ourselves over to the airfield, hoping the weather would improve.
Jacob, Abbie and I arrived at Hinton Aerodrome to be told the chances had improved and the dive would probably got ahead, though a bit later than scheduled. The forms were signed and we had a short training session.
We changed into our flight gear and waited…
The dark clouds dissipated, and lifted. We walked to the plane. There were 3 of us jumping in tandem, 2 taking video and another 6 jumping solo. The plane took off, slowly climbing to 13,000 ft, way above the clouds into bright sunshine and blue skies. Could I do this? I still felt OK. The amber light came on; the plane’s door was folded back, and the first 2 to jump prepared. The green light came on; they jumped out. Matt, my instructor and I sat on the floor and he turned us 90 degrees, also pushing me forward, until I was on the outside of the plane, hanging with my feet tucked back under it. He pushed us off…
It was fantastic… all the way down. There was no stomach flip, no nausea and no fear; just absolute joy.
Thursday morning found Abbie and I back in the Early Phase Clinical Trials Unit (EPCTU), at the Churchill Hospital, at 0830h. Vital signs, weight, urinalysis and bloods were taken; I was cannulated. We then waited an hour (this is not a moan, just a fact). A doctor wandered in and sat down on the bed beside me. He checked through my notes, and went through diagnosis and consent for trial with me; there was no eye contact, and he seemed uninterested and distracted. He left. We waited a further 3 hours; we’d been warned the day would be long, because we had to wait for blood results. Abbie and I completed a crossword and I read her a few chapters of ‘This is going to hurt’ by Adam Kay. Abbie lay on the bed. It was like going back 20 years, to her bedroom, with me reading her ‘The Philosophers Stone’.
After lunch the Specialist Nurses bustled in with the first of the Immunotherapy drugs prepared and run through, hanging from a drip stand. I was connected; it would take an hour to transfuse.
Nivolumab activates T cells within the immune system, allowing them to attack and kill cancer cells by blocking PD-1, which cancer cells use to avoid detection. It ‘switches off’ T cells. It is used on advanced cancers. It is not approved by NICE currently as it exceeds their limit of £30,000 per year of quality life limit; it costs £75,000 pyoql.
The transfusion finished without any side effects. There needed to be an hour gap before the second drug could be transfused. I snoozed between my vital sign checks…
The next infusion was commenced.
Tremelimumab binds to the protein CTLA-4, which is expressed on the surface of T Lymphocytes by cancer cells, ‘releasing the brakes’ and allowing T Cell activation. It is used for metastatic tumours.
Studies so far show these drugs combined having a 23% positive response. Good, but nothing to get too hung up on…
This infusion was also completed without event and we left, after thank you’s and goodbyes.
I’m not supposed to get even a little bit tipsy, so there goes the Pub Crawl we had planned…
Some lovely news is that My brother Mike, and possibly his son Oriol who is currently studying in Bologna, is flying home for a long weekend at the beginning of December. Oh, and I’ve been asked out on a date x
In case you might be wondering how I am day to day, I’m pretty good. I feel well. What I can eat varies meal to meal, and it doesn’t seem to matter what it is. I can sometimes eat a normal meal, though half the size of that which I would previously; on occasions I can be eating soup and get it ‘stuck’, causing nausea and bloating. I am more flatulent than usual, and constipated, which was never an issue before.
I am losing an average of 3kg per week.